Children have the ability to
ignore odds and percentages,
Raise Awareness with the
Pain is Temporary, Quitting Is Forever.
“There are 2 ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.”
Here is an online journal of my fight against the childhood cancer called Neuroblastoma.
My battle against Neuroblastoma started in September 2005, to read my journal from the beginning simply scroll to the bottom of this page and work your way to the top.
To read my journal from 21st May 2007 onwards, simply click on NEWS on the left hand side of this page.
20th May 2007
I have just returned from my trip to Euro Disney, a huge thank-you to my friends at The Thomas Ball Charity for making this happen, there is so much that people take for granted when taking a holiday which are a huge hassle for us.
For example before I was even allowed out of the country I have to be insured and documents need to be signed by my Doctors, and even then very few companies will insure me, and the ones that do charge a massive amount of money. The Thomas Ball charity made everything as easy as they could and I have had the time of my life in Paris. A huge kiss to you all.
19th May 2007
I want to say a huge thank-you to the wonderful Jodie and all who were involved in raising money at Moseley park school in the West Midlands, by getting the teenage boys to wear make-up! Jodie had 2 volunteers but when more people found out about it they were keen to do their bit too! the idea was for the boys to do the girls make up and the girls to do the boys, but after we they had made the boys up they got very excited and went around all the classrooms in the school collecting money for little old me and forgot to do their own make up (ha ha). people either chose to sponsor or gave to the collection on the day.
It's not easy getting make-up on teenage boys, so Jodie I salute you.
With the money they raised, they brought a huge trampoline for me and Louis to have fun with this summer, We are so grateful to you all and are so touched by everyone's kindness, to think how selfless they have been in their quest to keep us both smiling is very special.
Both Louis and I have had some rough times, but with the support we receive from my friends all over the world, I feel on top of the world, I will never forget how much you have all done for me.
We have both been on the Trampoline constantly, I will post some pictures soon so you can see just how much fun we are having.
9th May 2007
As many of my regular visitors know, my friend Kahlilla who I call my twin, has recently discovered this nasty disease is back and is now having treatment again.
I have received an e-mail from her family that I wish to share with you all, and hope that you will visit her site by clicking the picture or simply send her some positive thoughts, they all need your support so much at the moment.
Hi everyone, this is Lilla's poppy.
8th May 2007
You will all be pleased to hear that no news is good news, I must admit I have been so busy playing with my friends and going to playschool that I have neglected you all recently. Thanks so much for all the fantastic child friendly websites that you have sent me, I am hoping to have my very own page containing all my favourite websites, so it is nice and easy for me to find everything that I want.
Thanks so much for thinking of me, and please stay in touch. I will do my best to update you with news, stories and pictures as soon as I have more to tell you about.
Like Euro Disney! it's only a short time until we go, and I'm so excited.
30th April 2007
Last week I developed a nasty rash and my skin was very red and itched really bad, it was very horrible but after lot's of special cream it's just about back to normal again. I have been getting some belly ache recently too but apart from that I am doing ok at the moment.
The weather is getting warmer, the nights longer, I can feel that summer is nearly here and I love playing outside in the fresh air, and if all that isn't enough, I'm going to Euro Disney soon.
I even went round to a friends house to play recently, who is a boy so I guess you could call him a boyfriend but not in the way that you are all thinking.
Finally I owe you all an apology as I forgot to tell you something recently, many of you may remember that when I was first diagnosed with Neuroblastoma, I said I wanted to go to Drayton Manor Park and go on the Elephant Ride. There have been many times during my treatment that I thought I would never get the chance to visit there again.
A few weeks ago I was lucky enough to go, and I loved every second of it, and you will all be pleased to here that I went on the Elephant ride again. Sorry I forgot to tell you, but I have been so busy having fun recently that it slipped my mind.
Louis and I also love playing games on the computer, so if you know of any child friendly website's please let us know, as we are getting a little bored with CBeebies, because we are big children now.
22nd April 2007
My hero Brendan Devlin ran 26 miles and 385 yards in the London Marathon today in 3 hours 40, which is 2 minutes slower than last year but I will let him off as he's not getting any younger. He knows I'm only teasing, I'm so proud of him.
If you haven't sponsored him, please drop by his page by clicking on his picture below.
Well Done Brendon!
19th April 2007
Why have I been so quiet, is the question that everyone has been asking, in answer to your question, you will be pleased to hear I have been off on a big Aeroplane to see my Uncle David and Aunty Mel and their lovely children in Germany. Both Louis and I love playing with them all.
My brother Louis is really grown up now and was seen driving a big red tractor in Germany, despite my plea's to jump up and down on the big red tractor, he settled for driving it instead. If that's not enough he returned home and has just mastered the art of riding his bike without any stabilizers. Now he can balance fine, there's no stopping him and he is cycling at top speed everywhere, so watch out.
I told him it's like errrm riding a bike so he should never forget now.
Louis also attracted a young lady in Germany who took quite a shine to him and wouldn't stop kissing him, I have photographic evidence so I warn him I will show his friends if he gets cheeky with me. Could this be the beginning of a overseas romance?
The weather has been really warm here at the moment, so I have been busy playing outside on my pretty princess bike and only returning inside for an ice cream to cool down.
4th April 2007
Regular visitors will know all about my very special friend that I call my twin in Australia, of course I am talking about Kahlilla who was born the same day as me and was diagnosed with Neuroblastoma around the same time as me.
We today learned some very bad news which has left us all in a state of shock, here are a few lines from her online diary.
"Kahlilla's left leg was hurting again yesterday and she started limping. Mum took her to the hospital today and her oncologist ordered a bone scan. A few agonising hours later, our worst fears were realised when Dr Waters told Mum that Kahlilla has a neuroblastoma tumour in her left femur (thigh)"
Despite being on opposites sides of the world, we have become so close and this news is heartbreaking, please visit her site and give this beautiful little girl and her family your full support. They need your positive thoughts more than ever, so please help them the same way you have all helped me many times before.
Positive thoughts and love are needed as I am sure they will help her fight this
disease once again,.
2nd April 2007
I have been feeling a little tired and poorly for the last few days and had a sore tummy, but hoping it's just the effects of a cold which everyone round here seems to be fighting. Poor Louis has the nasty cold too and has spent much of the day coughing.
Don't go thinking that I'm sat around feeling sorry for myself though, it will take more than a common cold to keep this girl down. It appears that I can do no wrong at the moment as everyone is continually laughing at my gags and antics.
There's no better feeling in this world than making someone smile, and I hope you don't mind me blowing my own trumpet by saying I'm very good at it.
I can make anyone laugh within 30 seconds, or Louis in under 5 seconds, but he is so easy.
There are so many Easter Eggs coming our way at the moment, I better be careful or I won't fit into my swimming costume in the summer so I promise not to each them all straight away.
Maybe I should have a nice bowl of wholesome cereal instead eh?
FINISHED...........Now pass me those Easter eggs?
March 29th 2007
We have all been so down recently after hearing so many sad stories about children losing their battle against Neuroblastoma, sometimes it can be very hard being so positive when surrounded by such awful statistics and the harsh reality of this disease.
A quick visit to the website of Jay Bull soon made me realise that odds and percentages, are meaningless, he is a fantastic boy and hope you drop by and tell him just how special he is.
Jay Bull is a real inspiration to us all, he fights tirelessly in Australia to publicises NB and has won many awards, and is regularly in the newspapers. He really is an amazing young man!
Please visit his website for the full information on Jay's Journey.
March 26th 2007
I have just found out that Briony Woodward died last monday[19th march] aged 3 from Neuroblastoma, she always used to sign my guestbook when I was very poorly and when her Mummy showed her photos of me on the computer, she would say `look mummy tube like me.
It breaks my heart to hear of another little girl like me, losing her battle against Neuroblastoma and it makes me more determined than ever to make a difference against this nasty and deadly disease. Please join me, even if it is just telling a few friends about Neuroblatoma, raising awareness is priceless and only takes a few minutes.
I would like all the Woodward family to know that we send our love to you all, and our thoughts are with you at this very sad time.
March 25th 2007
My skin is still very flaky and itchy but much better than a few days ago, so my smile has returned again.
You will happy to hear that I'm still singing and smiling and loving life at the moment, please continue to follow my story as I may have a small favour to ask in May.
The love, support, positive thoughts and so much more that everyone of you from all over the world has sent me since my site was created is appreciated more than you could ever know.
Big Hugz to you All
March 23rd 2007
I had to visit the hospital today, because my skin is really suffering due to the Retinoic Acid treatment, I have had no sleep at all for the last few nights and have been in so much pain. If any of you reading this have seen the TV show or film "The Singing Detective" you may recall a man in it with really bad sore skin. That's what mine feels like at the moment.
It's hard to believe my skin has gone from beautiful and smooth on my birthday, to really itchy, sore and flaky within a few days.
They are going to monitor the dose that I am taking, and also advised that I'm scheduled for an MRI scan in May, which is quite scary as it will reveal if I am still free of Neuroblastoma.
Keep those positive thoughts coming my way as this really is a critical time few months for me.
March 21st 2007
Happy Birthday Louis!
It's not all about me, today belongs to my fantastic brother Louis who celebrates his 6th Birthday. He getting so tall and grown up now but one thing that will never change, and that's his wonderful ability to make me smile day or night.
You are a very special boy Louis and I love you so much.
I'm off to listen to some cd's with him, because this girl feels like dancing.
March 20th 2007
I am feeling fantastic and enjoying going to pre school, with my own friends and loving the fact that nobody stares anymore at the girl with a tube in her nose with no hair. It's nice to feel like I fit in with all the other children my age.
Everyone is saying how funny and witty I am, so maybe there's a future in stand up comedy for me.
However it breaks my heart to see so many children getting their angel wings, and want you all to know how passionate we all are on making a difference against Neuroblastoma.
No matter where in the world you are reading this, please take a few moments of your time and make someone you know aware of Neuroblastoma and it's devastating effects.
I know together we can make a difference against this disease, and think you will all be amazed at just how quickly we can spread the word around the world.
There is NO direct government funded research into this Neuroblastoma and drug companies only fund research into diseases that will make profitable returns for their share holders.
Neuroblastoma is not one of those diseases.
March 19th 2007
I have just discovered that Amelia Price lost her battle against Neuroblastoma at the weekend and has earnt her angel wings.
Amelia will always be a beautiful, amazing and special girl that will never be forgotten and I urge everyone who follows my story to spare a thought for her family at this very sad time.
Amelia you will always be an inspiration.
March 18th 2007
I'm 4 Today
Happy Birthday to me.....Happy Birthday to me!
After spending my 3rd birthday in hospital last year, this girl was ready to party today. No NG Tube, No Hickman line 'Wigglies' coming out my chest this year, I'm armed only with a new Kylie hair style and a new dress. So hey Mr DJ put a record on.
It's my brothers birthday on Wednesday and two of his school friends Olivia and Georgia also have birthday so we had a huge roller skating and bouncy castle party with over 40 children, it was amazing and they all sang Happy Birthday to me as I blew out the candles on my cake.
I had a brand new princess bike and so many cards and presents from all over the world, in fact I got so many I was buried in wrapping paper, although I am unable to thank each of you individually, I want you to know that I'm so grateful and want to give you all a huge thank-you for making my birthday a day to remember and for making me feel like a very special little girl.
Bike Riding, Roller Skating, Jumping on a Bouncy Castle, Dancing, Singing, Smiling and opening my presents were just a few of the things that I enjoyed today, people seem concerned that this disease could re-appear without warning, but I am concentrating on enjoying every second of this crazy life and filling it with very happy memories.
I'm so happy at the moment and love being a strong, determined independent fun loving gal, people are starting to see me as the princess that I am and not just a poorly little girl that's different from other children. I still have a very long journey with my battle against Neuroblastoma and I hope you will all continue to follow my story, we are friends forever now.
March 15th 2007
In just a few days time I'm going to be 4 years old! I'm such a big girl, I'm going to pre-school making my own friends and everything, it's a really good time for me at the moment. I have been getting lot's of cards and little gifts from all over the world via Post Pals too, so a huge thank-you in advance. My big brother is about to celebrate his 6th birthday too, and I thought I was all grown up.
My friend in Australia who I call my twin has been having a few problems lately and feeling poorly, so please drop by and make sure she has a good birthday too. http://www.kahlilla.com/blyssFeb07.htm
March 3rd 2007
I may have been a little quiet recently but rest assured it's only because I'm having so much fun.
I wish you could have seen me climbing to the top of the slide on my own and flying off the edge into the pit of coloured balls.
It's just so much fun being me, and yet so busy trying to fit in going to the pub for dinner, soft play, the park, pre school, dressing up and playing with my super cool brother Louis.
February 18th 2007
I Got Hair!
On Friday I swallowed the tablet easily and was feeling very confident, but when I tried on Saturday I had a few problems and struggled to swallow it which has knocked my confidence a little.
Apart from that I am feeling amazing and cannot stop singing, my current favourite goes like this
doesn't look a thing like Jesus
Have you heard it? if not maybe I should sing it on video for you. I'm off to bed now, I better get some sleep as It's pre school tomorrow and I'm looking forward to seeing my new best friend Ebony.
February 16th 2007
Louis and me colouring in our very own umbrella!
As you can see by my latest picture, I am still feeling fantastic and dare I be a little vain and say looking pretty good too, with my new hair.
Sorry If I worried you all by going quiet, but the truth is, I haven't had much to report as I have been so busy playing, singing, going to school and even making a snowman a few weeks ago. Everyone was complaining about the snow but I loved it.
The main reason for today's update, is I have something to tell you all which I am so proud of. For many weeks now, I have been struggling taking my Retinoic Acid and I Mummy has tried various ways of encouraging me to take them but mostly they have been mixed in food.
However today, I was feeling like a big girl, and I said "I want to swallow the tablet with some Orange and Lemonade please" The tablet went down straight away and with little fuss, I'm so proud of myself and feel like a really big girl. How Cool Am I?
Thanks so much for all your cards, e-mails and gifts from all over the world, everyone says I'm growing up fast, but you all make me feel a very special little girl.
February 4th 2007
I had a great day today, with boundless amounts of energy, I made everyone smile when I put on my old fashioned nurse outfit and used the cape as wings and said "Look I'm a flying Nurse" I don't know why they thought it funny, there was a programme called Flying Doctors wasn't there? so why not Flying Nurses?
Sorry for going quiet on you all, although I am feeling fantastic my dolls have been a ill, so I have been taking good care of them and I have been helping them get better too.
When not looking after my dolls or entertaining Louis, I'm off to Pre School making my very own friends, it's busy being me.
My hair is growing fast and furious and may need some girly hair products soon, maybe my birthday if I'm lucky. I can't believe I'm going to be 4 soon, I really am becoming a big girl.
I love singing, playing and making people laugh, I guess you could say I'm a fun lovin gal.
January 28th 2007
My face is a little sore at the moment but I've had worse so won't complain too much to you all, because we all know by now, complaining and feeling sorry for myself, just isn't my bag baby!
I've really enjoyed today, I painted a nice tea set at Nana Diane's and I'm looking forward to showing all my dolls and spoiling them with tea and treats.
I also enjoyed a great game of hide and seek today, I know where all the best hiding places are and using great stealth, I lie quiet and motionless so even if someone is in the same room, they don't know I'm there.
All in all I'm still having lot's of fun and enjoying life.
January 27th 2007
The lovely people at the Thomas Ball Charity were going to take me to Euro Disney with them before Christmas, but I wasn't well enough to make the trip so was very sad to miss out.
However, behind the scenes, they have raised the cash to send both Louis and I on a fantastic trip of a lifetime to Euro Disney!
How special is that? After everything I have been through, it warms our hearts so much to think that people have put so much time, effort and money into providing us with a very special holiday.
The charity was setup by the family of Thomas Ball who tragically lost his battle with Neuroblastoma but were able to turn a negative into something very positive, and are responsible for putting a huge smile on many children's faces.
To call them very special would be a massive under statement, if you have a moment please drop by their website by clicking on the link below and thank them too. Mummy always says you should reward good behaviour, and I couldn't agree more!
We are hoping to be taking the Euro Disney trip in May but will let you know exactly when we are going. We are both really excited.
I need to give a huge thank you to a very special girl called Natalia who raised some money and has sent me a cheque to pay for a character breakfast when I'm at Euro Disney. Natalia you are a star of the brightest magnitude and I can't wait to show you the photo's when I return.
I am over whelmed by the kindness I have received from all over the world, you make this girl feel very special, and want each and every one of you to know that every message, positive thought, gift, card, letter etc is appreciated more that you can ever know.
January 25th 2007
My hero Brendan Devlin ran 26 miles and 385 yards in the London Marathon last year in 3 hours 38 minutes and raised over £1,000 after being inspired by little old me.
Despite performing beyond the call of duty, this amazing man, is doing it all again in April, please drop by the link below to offer your support.
I have also heard that a lady called Alice Tell has been inspired by little old me and she promises not to have a good time for 60 days to help raise awareness and funds for Georgie's Fund, for more details click here
January 21st 2007
Although my face is quite sore, I'm still happy and having lot's of fun. Mummy has decorated my room with my favourite character Pepper Pig and it's a lovely girly bedroom, I absolutely love it to bits, but I still prefer to sleep in Mummy's big bed though.
What do you think?
I get the impression that my new room is to tempt me back into my own bedroom, but I'm not ready just yet. I will get there in my own time, don't worry.
Despite a few problems, I'm still facing everyday with a smile and a song, so if your reading this and having a rough time yourself at the moment, why not give it a try.
It works for me.
January 20th 2007
Everyone is trying to encourage me to eat properly at the moment, and even going to the lengths of offering me 1 penny for everything I eat, maybe I could make a large amount of money out of this. Seriously though, I don't have the tube in my nose anymore, so if I'm to keep it out for good, I must start to eat more or I will start to lose weight very quickly.
I really don't feel like eating much, but I am trying and although I have a long way to go, I'm eating little amounts and after 18 months of eating nothing, I think I'm doing alright.
I must admit though, I can be quite fussy, when I was at pre school, Julie brought me a Banana which was chopped up and I got upset and refused it, because I will only eat a banana if I can hold it like a big girl. It may sound a little silly, but I am a diva you know.
January 18th 2007
Just as a girl starts to feel like everyone else, with my head of hair and no tubes in my nose or wires coming out of my chest, my face is getting very sore and red which is a side affect of the Retinoic Acid that I am taking at the moment.
I have tried everything that people have suggested and despite bathing in Vitamin E cream and various other potions, my sensitive skin is suffering. Despite even using the cream before the starting the treatment again, it is still really sore and painful.
I have only made pre school on Wednesday this week, but hope to get back to normal. next week
January 15th 2007
I started the day, feeling fantastic and even enjoyed a huge play fight with Grandad Dave, but in the afternoon I became very tired and fell asleep. This is really not like me as life is much too short for afternoon naps, so I had my temperature taken and it was a whopping 39.8!
A quick call was given to the hospital and they said come to E37 ASAP! Just before we left Daddy's friend Simon, who we call Santa arrived with some post from Post Pals. Thanks so much for all the cards and gifts sent to me, we love reading everyone and to receive mail from all over the world is wonderful.
A special thank-you to all at the Thomas Ball Children's Charity, who had sent me and Louis a special cuddly toy, all the way from Euro Disney, we missed out on a trip there with them as I was poorly but they sent us a present when they returned. Both me and Louis loved our present and we made sure they came to the hospital with us. Thanks so much for keeping us smiling.
As you all know, I am currently wire free, which is fantastic but not so good when the hospital want to perform blood tests as it means I have to endure a big needle to take the blood. I'm a brave girl but I get really upset when they take blood and was heard shouting "Ouch....Ouch....Ouch" throughout the ward.
5 minutes later, I was fine and held some cotton wool over my little poorly, and made sure I got a sticker for my troubles.
Shortly afterwards a urine sample was needed so had to go to the toilet on demand whilst Mummy had the great job of trying to catch the wee in a tiny container. It was quite comical, trying to convince me to wee and catch it at the same time, but we did it.
I waited at the hospital until gone midnight, until they finally said I could go home as the tests didn't reveal anything to worry about, so we could go home to our own beds.
A very busy day, but it was nice to be cuddled up in my own bed with my new Disney cuddly toy.
January 13th 2007
I'm Wire Free!
As you know by now, the wires in my chest which I called my 'Wigglies' were removed before Christmas, which left me with just my NG Tube, which is fed through my nose, down my throat and into my belly. This tube had to stay in place until I was able to eat via my mouth again like every other boy and girl out there.
I am so happy to tell you all that the tube has finally been removed, so after 16 months, I'm finally wire free!
At last I can have my picture taken, without everyone pointing to the tube stuck to my cheek, but what makes me happiest is knowing I can play and party hard at home and with my new friends at pre school without the worry of somebody catching the tube.
It's been a long ride and although my battle is far from over, it's great to have some normality back in my life.
January 8th 2007
Guess where I have been today?
It was my first day back at pre school today and I loved every second of it, not only because I am enjoying being a normal little girl making my own friends and not being in hospital, but it is fantastic to be re-united with my old friend Julie who really takes care of me. It was so nice when she held my hand and made me feel at home with all the other children.
My face is looking better at the moment as the Doctors advised me to stop taking the Retinoic Acid for a few days and they will review the dose that I am taking. So whilst I am waiting I'm looking good again, or so they tell me.
My hair is coming back thick and fast at the moment, and it feels kinda weird, I keep stroking it and wonder if my curls will be returning soon too, I have been without hair for well over a year now and it really didn't bother me too much but I must admit I'm looking forward to doing lot's of girly things with my hair in the near future.
Although I am feeling fantastic at the moment, I was very sad to hear about another child in the UK who has been diagnosed with Neuroblastoma called Emma, her parents say that little old me have inspired them to help raise the profile of this nasty childhood cancer by setting up a website which follows her journey too.
Please drop by and say hi, if you have a few moments, you all helped me so much and I will never forget what a difference you all make.
Together, we are proving we can make a difference in raising awareness about Neuroblastoma and hope one day it will inspire someone to find a cure.
Remember, Anything is possible
January 3rd 2007
The party season is finally over and guess and would love to detox with the rest of you girls out there but I'm afraid it would take far too long with all the chemicals in my little body.
I spent New Year with my Nana Diane and Grandad Dave, and also enjoyed playing with Aunty Lynsey's children Dylan and Dean who are nearly as mischievous as Louis and I. We all have so much fun when together and always seem to be able to make all those big adults smile.
On a downside I am really struggling with Retinoic Acid, because it has made my sensitive skin very sore, my cheeks are very red and really hurt at the moment. I must admit that sometimes it really gets me down and I have to have a really good cry.
A kiss and cuddle from Mummy soon helps me forget though.
I am still not eating a great amount which means that I still have this NG tube in my nose which again is making it very hard to give me the Retonic Acid.
If there are any parents out there who have any experience with this, please drop me an e-mail, any tips would be appreciated.
December 28th 2006
I'm Back and armed with a Curly Wurly!
You will be very pleased to hear that I had a wonderful Christmas, and enjoyed daily parties, games and the most fun I've had in a long time. You could say I have been quite a socialite or even the new Paris Hilton as I have been to all the best parties in the UK.
My Aunty Kerron and Uncle Gordon invited us all to spend Christmas in Bicester with them, along with Uncle David, Aunty Mel and their two lovely children Lisa and Jordan all the way from Germany. With 4 excited children at Christmas to look after, luckily Nana Pam was on hand too to keep us all occupied.
The days went so quickly and were filled with so much fun, I feel such a happy little gal and loving every second. I don't know if we have any pictures of us from our stay, so I am hoping that my Uncle Gordon will be able to send some we can use in the next few days.
After spending most of the Christmas in their lovely house, I must admit it looked a little trashed by the time we left, but that's the sign of a good party isn't it?
Before Christmas the Postman brought a huge parcel containing lot's of Christmas presents from our friends at Neuroblastoma charity Georgies Fund. The gifts made me and Louis so happy and it felt like Christmas had come early.
I want to thank them so much for the gifts and for thinking of my wonderful brother Louis, I get so many cards, messages and gifts from all over the world and he never complains but enjoys helping me open them.
It was fantastic to see his face when he opened his Robosapien, and his Leapster Learning Pad, they made two children very happy, so a huge thanks to everyone at Georgie's Fund.
I've got some more parties to attend, so I will leave you for now but rest assured this girl is feeling F.I.N.E fine.
Dec 15th 2006
Thank you so much for all the wonderful gifts and cards from all over the world that have been sent our way via Post Pals. Louis and I had so much opening everything and it feels like Christmas has come early!
I also want to thank everyone that has signed my guestbook recently, because it seems that I have had lot's of new visitors leaving beautiful messages and positive thoughts after word spread about my battle on many internet forums.
Every message in my guestbook, post card, greeting card and gift I receive is appreciated more than I could ever tell you in words, so thank you to each and everyone of you.
I now have a Nottingham Forest cuddly toy and a Notts County teddy bear too, I think daddy's hopes of me being a Derby County fan are fading fast.
My hair is coming back thicker and faster now, and everyone tells me that people who have had chemo, get very curly hair when it grows back. If that's true then things could get quite interesting, it can't get any curlier than it used to be, can it?
I am feeling fantastic still at the moment, and enjoying doing lot's of girly things like playing with make up, singing, dancing and dressing my dolls.
It's great being me!
December 12th 2006
I went to the hospital today and as expected they advised I will be taking a drug called Retinoic Acid for the next 6 months and I have a very anxious wait to see if the cancer has gone for good.
However to my surprise I will not be having a MIBG scan or a Bone Marrow test to see if my body is still clear of this nasty disease called Neuroblastoma. The reason for this is because my body has taken a huge hammering from over a year of chemo, stem cell and the very dangerous VOD (Liver failure) and if these scans did show any evidence of the disease, they would not be able to do anything for me because my body cannot tolerate any more treatment.
It's quite scary to think there is a very strong chance of this disease returning quickly and that if it does, nobody will be able to help me, but I'm not the kind of girl to sit feeling sorry for myself dwelling on something that may never happen.
I'm feeling fantastic, I have boundless amounts of energy, excited about Christmas and looking forward to starting pre school in January, so I'm concentrating on living my life to the full and enjoying every second of my life, I urge everyone of you reading this, to do the same, it's quite liberating.
December 11th 2006
Wow! guess who is feeling like one very special little girl?
My guestbook has received so many beautiful messages from all over the UK, after the word about little old me seemed to have spread like crazy via internet forums.
Football fans from so many different clubs have been flocking to say hello and wish me a merry Christmas. Maybe one day, I could lead the England team out when Wembley finally opens, what do you think?
I expect to hear "Sammy for England" across the terraces this Christmas, a girl can dream I suppose.
Over the weekend Louis and me, have been busy playing with stick on transfer tattoos, Louis thinks he's a big tough guy and I had some very lady like ones too. I went to see Louis in his school nativity play today, he was so cool as an Inn Keeper, but I had to laugh when I noticed he still had his tattoos on his arms. That boy was certainly in character and takes his method acting seriously.
I had a phone call from the lovely Julie at my Pre School, and she has invited me to a Christmas Party, I'm really excited about it, and although I don't have much I will be certainly letting my hair down. This girl loves to party!
I'm going to the hospital tomorrow, because the Doctors want to see me, to discuss the next stage of my cancer battle, which I expect to involve scans etc, but I will let you all know how I got on.
As for me, I'm feeling happy, confident full of energy and ready for Christmas. It's pretty good being me at the moment.
December 7th 2006
I would like to say hello to everyone at www.nottscounty-mad.co.uk website, who have been dropping by and saying so many nice things. A huge thank-you to everyone that liked my singing voice too, I have been busy practising for my next video for you all.
I am enjoying every minute of my young life at the moment and slowly turning into a rock chick. Louis and me enjoyed a great game of musical statues today, we put on our favourite music channel and when someone hits the mute button, we have to freeze like a statue. When the music starts, I play my air guitar with everything I've got and give my best rock face before turning into an angelic statue. It may sound silly but it's so much fun.
With no tubes in my chest anymore, I have also been enjoying nice soaks in the bath with lots of bubbles, I really missed the simple things in life but it's all almost a distant memory now.
My hair seems to be growing quite quickly again now, and have dark stubble appearing making which makes me look like GI Jane, it's coming back just in time though as it's very cold outside.
I'm also really looking forward to going to pre school after Christmas, I have so many wonderful memories of Julie who I developed a strong bond with before I was diagnosed with this nasty disease. Us girls have so much to catch up on.
Oh I nearly forgot, I'm just the most excited little girl because Christmas is on it's way.
December 4th 2006
Just because I have been busy living the dream and having a good time, please don't think I forgot about you all. As a little thank you for sending so many positive vibes my way, which I believe has helped me bounce back so many times against all the odds, I have posted a little video of me singing for you all.
I have 13 years before I can get on the X Factor, so the training starts now.
Hope you liked that, would you put me through to the next round?
December 1st 2006
Christmas is on the way!
Louis started the day by opening number 1 on his Simpson's Advent Calendar, and I followed by opening door number 1 on my Barbie Princess Advent Calendar. Chocolate everyday, YUMEE!
I'm still feeling fantastic and I have a new favourite song that I cannot get out of my head, it's America by Razorlight and I love it. I may just treat you all to a video of me singing sometime soon. Would you like that?
Louis was feeling very poorly and went to the doctors who said he was very dehydrated so they rushed him to hospital, I was very worried about him.
He came home late at night, and I waited up for him, but luckily it is just a nasty virus, so he will have to spend some time in bed and drink lots of fluids.
November 30th 2006
Louis is poorly at the moment, so our roles have been reversed and I have been busy keeping him happy and smiling, it's the least I can do after everything he has done for me.
Still no news from the hospital, but I'm sure they will be calling for me soon as they will want to run many scans and test to check this cancer has gone from my little body. Please keep your fingers crossed for me, because this girl is loving every single of being home and out of hospital.
November 26th 2006
The hospital have gone quiet on me so I have been busy enjoying life and having fun with a capital F and it feels great.
It may still be November but me and my brother Louis have decided it's time to spread some Christmas cheer, we both pestered Mummy to put up the Christmas decorations already over and over again until she finally agreed and our home now looks like a Santa's Grotto. How cool is that?
That was just too easy though, we want to spread cheer outside of our home too, so when we arrived at Nana Diane and Grandad Dave's house today we insisted we help put their decorations up too. They put up a big brave fight and insisted it was much too early and that they have never in life put Christmas decorations up in November!
By 5pm they finally conceded defeat and they had a fully decorated Christmas tree in their living room courtesy of Louis and Samantha. What a fantastic team we are proving to be, and watch out because we could be knocking on your door next with a helping hand to put up your Christmas decorations too.
After spending most of last Christmas and bank holidays in hospital we are planning on making this Christmas one that we will never forget.
November 19th 2006
When I rub my hands across my head at the moment, I can feel my hair beginning to grow back, it feels a little strange after being bald for so long but will be nice to have something to keep my head warm for winter. The question that everyone is asking though is will my infamous curls come back?
I am feeling fantastic and on top of the world, and loving every single second that I am at home and in good spirits.
If you have followed my story from the beginning, you will know that before I was diagnosed with Neuroblastoma, I went to pre school and made a friend for life in one of the teachers called Julie. I had a surprise phone call last week and I should be able to go back to pre school after Christmas if I am still feeling well and I cannot wait.
I have so much to catch up on with my friend Julie and I'm really excited to be going to school like my brother Louis and having my own friends too. There has been so much that I have missed out on in the last 15 months and it feels amazing to be getting on with life like a normal 3 year old girl.
I went to the pub for Sunday Lunch today and treated everyone to a handful of my favourite tunes, followed by my own chorus of Bravo....Bravo etc just to get everyone in the mood. A nice man on the table next to me said "She's a happy little girl" Guess what? he's not wrong!
When I got back home, I began thinking about how many people love to hear me sing and that I maybe able to use this to my advantage. I decided to charge people for every song that I sing, my rates are very reasonable at 1p, 2p, 5p or 10p and my catalogue of songs is growing quick with old school nursery rhyme classics to cool new tunes like America by Razorlight.
It went down a treat, and in just a few hours of my trial run, I earned a whopping 50p, forget X Factor, this girl has her sights set on Broadway.
November 14th 2006
I am very sorry to say that I have just learned that my friend Chiara in South Africa lost her battle against this nasty disease on the 13th November at 18:40.
Chiara will always be a beautiful princess that will remain in our hearts forever, and her memory will forever remain.
Her very brave parents wrote on her website "Our precious little Princess Chiara went home to be with her Lord at 18:40 tonight. She went very peacefully, we thank the Lord for that. She is with Jesus right now, beautiful, perfect and in no more pain!"
November 13th 2006
Yesterday, I went to the pub for a good old fashioned "English Sunday Dinner" but decided on a children's meal instead which consisted of Pizza and chips. Although I didn't eat much, it is so cool, being able to sit in the pub having dinner like a big girl.
After my dinner, I discovered a big playroom so me and Louis threw off our shoes and got down to some serious fun, this is the life I thought to myself.
It was aunty Lynsey's birthday today, so I sang her Happy Birthday and even helped blow out the candle on her cake, there was only one because there wasn't enough room to fit 30 candles even on this big cake.
It was a fantastic day, and I certainly slept last night after having so much fun.
As I have no 'Wigglies' coming out my chest anymore, I enjoyed a long soak in the bath tonight, so I'm feeling nice and clean. I'm now all cosy in my Princess dressing gown, so going to bed now.
Speak to you all again soon. X
November 11th 2006
I was feeling a little sick today after a feed and ended up vomiting my NG tube through my mouth, it was very traumatic and I had to return to the hospital to have a new one fitted and you all know how much I hate that!
Apart from that, I am still very happy and feeling pretty good but most importantly, I'm still at home in Mummy's big bed.
November 7th 2006
Mummy received a phone call from the hospital today, and warned that there has been a nasty virus on the ward where I have spent so much time. It could be very dangerous for me, especially as it will be a year before I have a normal immune system again.
They will be putting me on some very special medicine for a whole month, so hopefully I will be alright, but I am not saying too much as whenever I open my mouth usually something bad happens.
As for me, I am just having such a good time, being a normal happy little 3 and a half year old girl.
November 6th 2006
I had a fantastic time last night as we had a family bonfire night at home. Louis and me screamed as loud as we could as every firework went off.
It was fantastic, getting all wrapped up and sat outside watching the fireworks eating hot dogs with my brother Louis. Aunty Lynsey came too with Dylan and Dean who always make me smile, along with Nana Diane and Grandad Dave, we all had so much fun.
I'm feeling fantastic!
November 4th 2006
Don't worry guys, I'm still out of hospital and having a great time. I have spent most of this morning rolling around in wet, freshly cut grass, and got very messy. My very girly pink trousers, hat and coat all ended up green. It was so much fun, you should try it sometime.
I have also managed to get hold of a picture in my Halloween costume, I thought you may want a little look.
A whole week with no hospital, no tests, just at home doing my own thing and I have missed doing the simple things so much over the past 12 months, so I'm really happy at the moment being a normal 3 year old girl.
October 31st 2006
Don't Panic It's Only Louis!
You will be pleased to hear that I popped on my Halloween outfit and went to the party with my brother Louis. It was fantastic, although I must admit with me not being 100% walking in a house with loads and loads of kids was a little over whelming.
I was feeling a little shy and tired so stuck close to Mummy and although I was really enjoying myself, I left the big children to play the games and left a little earlier than everyone else.
I'm so happy though, I wanted to be home for Halloween and I'm glad I made it.
When I returned home from the party, I stayed up for awhile and loved seeing all the other children knocking on the door with so many wonderful costumes on. "Happy Halloween" I shouted at them all.
My brother Louis had a fantastic time too! He loved the party and we both want to thank Isobel Randall's Mummy and Daddy for showing us such a good time. Lucky Louis also went Trick or Treating with his friend Maisey and her mummy Emma so again a huge thank you to them too.
There's no news from the hospital, so this girl is making the most of every moment at home and loving every minute of it, sorry I can't show you a picture of me in my outfit but everyone forgot to take a picture before I got my pyjamas on.
October 28th 2006
I had a really good night's sleep at home last night, YIPEE!
I have been busy preparing for Halloween, so I popped on my outfit and went to Crich where they had ghost trams, it was very scary and must admit I cried when a big scary man approached me.
My big brother Louis was scared too though when some ladies dressed up as child catchers, captured him.
It was very spooky, scary but great fun, and the perfect rehearsal for my Halloween party.
Oh by the way, I am feeling fantastic at the moment, I just get tired very quickly but apart from that I am fine. I'm just glad to be home again.
October 27th 2006
At 10am I was expecting to be discharged when the Doctor advised there was still a trace of the infection, which meant another 24 hours of antibiotics. I was allowed home for a few hours though and returned to the hospital later prepared for another night at hospital.
It is getting very traumatic for me, having the medicine through the cannular in my foot as it hurts so much, and I have to be pinned down, which makes me cry even more.
Antibiotics soon cause cannulars's to fail too, and this is why the last one was moved from my hand to my foot, it was horrible tonight as the nurses was having problems and the reason for this was the cannular on my foot was now failing too.
After a big discussion it was decided it would be more traumatic for me having another one fitted, and as I am feeling so well, they will let me go home. I will be tested again next week, and hopefully everything will be clear again.
I'm off home back to Mummy's big bed.
October 26th 2006
You will be very pleased to hear that my wigglies were removed whilst I had a magic sleep, which feels like quite a landmark. It's like I have always had them in, so it feels a little weird not having them around.
Whilst having my magic sleep the Doctors removed the nasty cannular from my hand and but one in my foot instead, so my running around has been put on hold for a few days. The reason for it being there is because I have no wigglies to put the antibiotics straight into me.
It is the worst feeling though when the medicine goes in and I can be heard shouting Ouch....Ouch......Ouch...Ouch...Ouch! I can't explain it but it's a very strange sensation.
I must admit I have been feeling sad, teary, quiet and a fed up this week, but luckily I convinced the nice nurses to let me go home for the afternoon. That's when I'm happiest when back home with Louis and CBeebies on the TV.
Hopefully I will be back home in Mummy's big bed very soon.
October 24th 2006
I awoke feeling horrible this morning, my temperature hovering just below 40 and I feel so weak, helpless and genuinely fed up. I look like one of those little monkeys who just cling to their Mummy.
Whenever my line is used, shortly afterwards I feel like I have been hit by a truck, my temperature rockets and I begin shaking so everyone is 99% sure I have a line infection. The nasty infection gets pumped all around my body when the line is used, so my Wigglies are now officially out of action.
This presents a little problem as I need a blood transfusion today, all the Doctors and nurses here are lovely and I knew what they were going to say before they approached me. I have to have a Canular fitted on my hand.
I tried so hard to be brave but I cried and cried as it was fitted, and it is very uncomfortable, I HATE NEEDLES! This was followed by my urine looking a very worrying strawberry colour, but the doctors said not to worry.
My Hickman line was due to be removed in the near future but as it is now infected and useless it has been decided to have them removed from my chest tomorrow.
When you read this on Wednesday afternoon I will probably be in theatre, so spare a thought for me if you can.
On the downside I have a week in hospital feeling very crappy, but on the upside my treatment is finished with the exception of Retonic Acid and these annoying wires sticking out of my chest for the past year, which stop me from having a big bath and from going swimming will finally be gone.
If you look at it like that, this is going to be a very memorable few days and very very positive. Between me and you, I'm going to miss my little pouch and looking after them darn wires.
I believe that my Doll is also feeling much better and she has asked me to remove her wigglies too, so we are both on the road to recovery now.
October 23rd 2006
Just a routine visit to the hospital this morning to check my blood counts and then off home again, or so I thought. After my tests, I went home and would hear about the results later in the day, but I was home for under an hour when I went from a singing happy go lucky gal to a very upset girl with a temperature of 40 and also began shaking uncontrollably which was very scary.
I rushed back to hospital and more tests were taken, but all this started shortly after my Hickman line (Wigglies) were flushed after my blood tests. I'm no expert but get the feeling that I have an infected pair of Wigglie's on my hands.
That means that I am stuck in hospital for another week, feeling pretty awful on antibiotics, don't worry I will shake this off, I always do remember.
October 22nd 2006
I have been so busy having fun, I forgot about you all for a few moments, so please forgive me for going quiet on you all yet again.
I have been out and about, and have a fantastic new dance to show you all, which involves shaking my bum, I must try and capture it on film for you, it seems to go down very well on my test audience.
After much searching, I have found my Halloween costume, and I'm very happy with it, Louis has one too and really looking forward to the party at his friend Isobel's house next week, it's going to be so much fun!
Singing, Dancing, Playing, Dressing Up, Going Out, Watching TV, Reading my Magazine's and books, and of course sleeping in Mummy's big bed! I'm having the time of my life, being out of hospital really agrees with me.
People have remarked I'm looking a little pale though, but I am having my bloods checked tomorrow morning at the hospital.
October 20th 2006
The treatment protocol for Neuroblastoma here in the UK, is usually chemo to shrink the tumour, surgery to remove the tumour, more chemo until the body is clear of Neuroblastoma cells, Stem Cell Rescue, Radiotherapy on the original tumour site, and finally Retonic Acid.
The Doctors have decided against giving me Radiotherapy because this could cause further harm to my already battered liver. The original site of the tumour which was removed many months ago is much to small and hidden away for them to blast affectively. The feeling is that I would not benefit fully from this treatment and would be at considerable risk from further damage.
However they did warn that as I have drifted from this protocol, it does increase my chances of this disease coming back.
Odds and Statistics have never stopped me before and they sure as hell are not going to stop me now, it's time to get on with living, not worrying.
My advice to you all reading my journey is, Don't wait for something bad to happen to you before you start living your life to the full, Do it now!
I maybe only 3 but I'm told that I'm wise beyond my years.
October 17th 2006
You can take the girl out of hospital, but you cant take the hospital out of the girl!
Dolly is feeling better too.
Don't panic because I have been a little quiet on you all, I have a very good reason and that's because I have been out having fun, fun and yes even more fun.
Saturday I was out from 10am until 22:30! We went to Tamworth snow dome in the daytime which was fantastic, there was so much to do there, everyone told me it was pretend snow but it all looked very real to me.
As night fell we went to Matlock Bath for the Illuminations and firework display, after being in hospital for such a long time, it is just the best feeling to be outdoors and loving every minute of being a little girl again.
If all this fun I'm having is not enough, I hear Christmas is on the horizon and believe me when I say my Christmas list is now looking very healthy already. I'm to forget Christmas for the moment though, as I am really looking forward to Halloween and Bonfire Night.
I had a invite to a Halloween party too, from my brothers friend Isobel, I'm really excited about it and looking forward to dressing up. I take competitions seriously though, so have got into training for the "Duck Apple" game. I put a few grapes in a bowl and I can now eat them out the bowl with my hands behind my back! It may be a mini version, but I'm getting there.
As for me, I'm not eating as much as I should but I'm getting cravings for all the wrong foods like cakes and chips, so I'm sure it won't be long before I'm eating everything in the cupboards.
On Sunday I had a craving for chips and my quiet demands quickly got louder. "I want some chips.....I want some chips......I want some chips." Guess what? I got my chips.
So the good news is I'm out of hospital, back at home, eating tiny amounts and loving every second.
October 13th 2006
I have been home for the last few days and loving every second of it, especially getting to sleep in mummy's big bed and not the hospital.
Thanks so much for the many many food tips and recipe ideas that you have e-mailed me, we have saved them all and will give them ago. I'm sure it won't be long until I'm eating loads again, I'm feeling great and very happy right now.
I will go back to the hospital for a check-up on Sunday, to make sure my bloods are doing ok, but as Louis keeps singing to me..............................
"Don't stop me now
October 11th 2006
My last day in hospital, and I have received loads of cool presents from you all via Post Pals, I am so lucky to have so many friends around the world and you all of you have put a huge smile on my face yet again.
Here is a picture of me with my new dolly from Linda and her Ferret Rescue Centre in Kent
Huge thank-you to you all that have sent me so many cool cards and gifts. A special thank-you to Becky Basanda in South Carolina, USA, Victoria, Kate Dee, Angela, Nicky and my very special friends in Australia who sent me my very own Peter Possum.
October 10th 2006
Yabber Dabber Dooooo! OUCH! I got taken by surprise with a GCSF injection tonight, I thought I had seen the last of them, but my Neutrophils have been dropping slightly the last few days, so it was decided the dreaded injection may be needed.
I am in hospital this evening, and having 150ml of milk via my NG tube rather than TPN Feed via my wigglies, if all goes well, I get a night at home tomorrow night.
The idea is to try and build me up on the special milk, so that I am getting around 100ml for breakfast, lunch and tea and then a little more overnight. Then I should begin to feel like eating some proper food, and start thinking about pre school and doing normal stuff for a gal my age rather than be stuck in hospital.
I have big plans you know, and that goes fo ryou guys out there too.
October 9th 2006
A nice Doctor came to see me today, and is trying to free me from the hospital, he told Mummy that I have now come towards the end of my treatment, my body is now working fine so let's get her off the nightly TPN feed which is keeping me in hospital and back home where I belong. Amen to that brother!
He even said no more GCSF injections. I think I want to marry this guy!
The problem is, my body has become quite reliant on TPN feed which is through my wigglies and into my veins, this means my tummy has shrank and I have to be encouraged to eat again, which will allow my tummy to get back to normal.
I think lot's of people are meeting tomorrow, to discuss tactics on how to get me eating again.
At the moment though I have one night of liquids back in hospital, and then no more TPN, which means no more hospital, which means this gal is heading back home.
Any ideas on lovely foods to get my taste buds working again? please send suggestions with the subject line "Feed me......Feed Me Now!" to Samantha@SamanthaHughes.co.uk
October 8th 2006
Doesn't time fly when your having fun, 4 days since my last update and yet it seems like only a few hours ago. Of course I have endured a platelet transfusion since we last spoke but I'm really enjoying being at home in the afternoons, however I increasingly find myself getting upset when I have to return to hospital at night.
Saturday morning the Doctors said I deserve a night at home! I ran out the doors at 09:45 in my pink Mini Mouse slippers and had a fantastic day at home. The best part of the day, If I'm honest is getting to sleep in Mummy's big bed again.
A great weekend, with lot's of fun, and enjoyed keeping up with my brother Louis, I even played football in the garden!
Just like Cinderella though Sunday night came and once again I got a little upset, as I didn't want to leave the ball and go back to hospital, I love being at home now, but I know it won't be long before I'm at home all the time.
So I am off to hospital, but this little gal is feeling very good about myself and my future.
October 4th 2006
My Neutrophils are up and down like a yo-yo at the moment, the GCSF injection ensured they rocketed up to 5 but then slipped to 1 again. Whilst talking about all this, they took me by surprise and got me with the injection in the afternoon, OUCH!, I never saw that one coming, I don't usually have it until night time.
The Doctors seem happy with my Liver and can see that it is shrinking a little and happy woth the progress that I'm making. I was told this morning "You Look Happy", "That's because I'm going home later" I replied!
When I got home, I had the urge to be in the great outdoors, so I put on my pink coat and pink hat and enjoyed a game of football in the garden with Louis.
I'm happy and feeling great at the moment and I owe you guys so much for all that positive energy that you sent when I was so down.
I have received an e-mail all the way
from Andy and the 28 Royal Engineers Regiment in Afghanistan
The are running rowing and cycling 6230KM!
Please drop by and leave messages of support for them here
**Please be patient if I have not replied to your e-mails yet, I am receiving them but having a few problems sending mail at the moment. I have loads of replies stacked in my outbox and working on resolving the problem**
October 2nd 2006
Another good night for me, The Doctors said this morning that they are going to keep me on the defibrotide medicine for another 3 days. This means that I have to stay in hospital to around 2pm then come home until 7pm before heading back to the hospital again. As my feed increases throughout the week, they will take me off my overnight TPN feed and that will mean me back at home for good.
Feeling great I headed home today, just in time to pick Louis up from school, who was pleased to see me home, as he likes to get up to mischief with me but he's a typical boy and more interested in his Lego Star Wars Xbox game once home.
So what could a girl do, with my remaining quality time at home? That's right I had a good old fashioned pampering session and painted my nails a nice red colour. If I'm on my way back to health and happiness, then a girl has to look her best you know.
The clock struck 7pm and it was time to return back to the hospital, once again I shed a few tears, but I know it's not for much longer so I put on a nig brave face and off I went.
What I didn't know was my Neutrophils have dropped to 0.59 and in danger of becoming neutrapenic so I had to endure the nasty GCSF injection in my leg again, I won't be wearing skirts for while with all these bruises on my legs will I? I'm only having them every two days so I will go with the flow for now, but I don't like needles.
October 1st 2006
A Promise is a promise, here you go.
I am convinced that the reason I'm up and out of bed, is because of the thousands of people worldwide, thinking the same positive thoughts and sending them my way. We have been through this together so many times now, and you always give me that extra strength to bounce back.
Anyway, I had another good night last night, and once again, the nice Doctors said I am doing so well, I can go home for the afternoon. The only thing keeping me in hospital over night is me not eating anything, so if I can slowly increase the milk food via my NG tube this week, it will mean no more TPN feeds via my wiggly tube and that means back home in Mummy's big bed.
Louis was an absolute darling today, and he showed me how to take photos, with a digital camera, he loves teaching me things, looking after me, playing with me, he's the best brother in the whole world.
I watched a little TV and noticed all these adverts for Christmas toys already, and I have now got a rapidly growing Christmas list, I can be heard shouting I want this over and over again, so Santa better watch out because he's going to be busy this year.
I made everyone laugh today, it was explained to me that because I don't need anymore of that nasty chemo medicine, my hair will finally grow back for good. I replied "but I don't want it to grow back, it gets in my way!"
It was 7pm, and I was hiding under the bed covers with Louis, laughing and giggling having so much fun when I was told it was time to return back to the hospital and I must admit that I shed a few tears, but hopefully I can come home again tomorrow.
30th September 2006
The Doctors are delighted at my progress, they were looking for me this morning but I was hiding in the playroom drawing smiley faces.
They said the worst of this nasty VOD is over, and although my Liver is still very big, and it's going to take a while to get better, they feel I'm going to be ok.
Not only that, but I could go home for the afternoon if I wanted too, errm let me think about that one for a minute.........YES....YES...YES!
I'm going to be ok, my website is working again, I can go home for the afternoon, today is a very good day!
So home I went and a delighted Louis was thrilled to see me, we had loads of fun and played lot's of games but the little mischief also teased and tormented too, but that's older brothers for you. It feels great being back home again.
I just had time to watch X-Factor on the TV, practice my singing and dance moves before heading back to the hospital.
Yet again you have all helped me get better, I am convinced that the many thousands of people across the world sending positive vibes to little old me, has made a huge difference in my recovery. I would say the drinks are on me, but I maybe generous but not that generous.
You all impressed me, with how hard you tried to get an update, I understand Georgie's Fund and my friend Kahlilla have received lot's of e-mails asking for an update from concerned followers of my exploits.
My friends in Australia deserve a very special mention as they put me on Kahlilla's website and put many people's mind at ease whilst also sending loads of love from around the world my way.
I may only be 3 but this girl has had more come backs than Frank Sinatra already and it's all down to you out there, the wind beneath my wings and I thank each and everyone of you with a great big hug and a kiss from me to you.
As you have all been so good, I will try and show a picture of me smiling tomorrow, how does that sound?
29th September 2006
I'm still feeling much better, I went for a walk this morning as usual, before keeping Mummy and Nana Pam busy with games and toys all day. I was even caught cheating at Guess Who!
The Doctors came to see me and advised I need a platelet transfusion today, I didn't see that on coming did you? sorry but they are becoming the norm at the moment.
However they are very pleased with my blood counts which slowly seem to be improving, but my Liver is still very big and below my ribcage, which isn't where it's supposed to be, I believe.
They originally said they would expect to wait 10 days before seeing any improvement, and we have a few days left yet, so just have to remain patient and positive at this moment in time.
I'm smiling and singing though, and that's just got to be a good sign, hasn't it?
28th September 2006
A much better sleep for me last night ensured I woke up feeling pretty darn good again this morning, and like some hotshot boxer went for a walk for the big weigh in, my weight was exactly the same as yesterday.
My belly looks much better and is not causing me as much pain either which is fantastic, so I sat up and chilled out playing Finding Nemo on the Playstation.
There is always a big test though which will tell you how I am feeling, I am asked "Sam, are you feeling happy or sad today?", If I'm not well I will remain silent or shake my head but today I shouted from the top of my voice "H A P P Y!"
I want to do something! is what I have been shouting quite often today, I have some fun to catch up on and don't plan sitting around. So today I have enjoyed singing, dancing, smiling and playing whilst ordering Mummy & Nana Diane to get more toys. SAMANTHA'S Back on form kids.
I may be feeling much better, ready to party and my belly has gone down a little, but my liver is still the same size. Although blood results are showing very slim and slow improvements, we still have a very long way to go, before I am safe, so I just got to keep taking baby steps forward on my way to recovery.
27th September 2006
I awoke this morning 1kg lighter and my tummy is shrunk a little, but it still hurts like hell every so often, the pain is a little like contractions when your pregnant I'm told.
Something changed in my thought process when I opened my eyes today, I am just so fed up of lying here feeling sorry for myself, so I announced that I would like to go for a walk. I was helped out of bed and stood on my own two feet for the first time in ages, and let out a loud cry of MY TUMMY IS HURTIN!
Even though my belly hurt, this girl was on a mission and was determined to go for a walk, tummy ache or no tummy ache.
I then enjoyed a nice slow walk around the ward, and all the Doctors and nurses seemed amazed at my little transformation, but looked so happy to see me going for a walk. On the way back, I stopped at the little chair by the telephone which I like to call the bus stop.
After a little rest, I walked back to my room, I set myself a little goal and achieved it, it felt so good to stretch these legs of mine.
I going to try some special food via my NG tube today, it's only 3ml an hour, but it's little baby steps forward on my road to getting better.
Oh and I nearly forgot, I need another platelet transfusion today too, so it's going to be quite busy.
All in all, I'm still very poorly and my belly is very sore too, but I feel a tiny bit better in myself and right now that makes a huge difference to me.
26th September 2006
No news today I am afraid, everything remains the same. I still feel very poorly and my tummy still hurts, however I did have another blood transfusion today, bet you didn't see that one coming eh.
It's one day closer to recovery though, that's what I keep telling myself. It will take more than a poorly tummy to knock this gal down.
To avoid any complications with the blood transfusion, I was given some special medicine to make me wee wee, and it didn't take long to work either, and I got through 6 nappies and a bed change.
25th September 2006
I wish I had some news for you guys but I am afraid I have very little to tell you today.
The Doctors decided against a scan today, as all my blood test results have given them all the information they need. It's a little too soon for the medicine to do the job and my liver has not repaired itself just yet, so very little has changed.
I get the impression this is going to take some time, the hardest part is not knowing as everything remains in the balance for me and could go either way.
That said this girl is a fighter and always positive, so I just got to keep fighting and make sure my little body does too. It also gives you all plenty of time, to keep them positive vibes coming my way.
I can still be heard saying the heartbreaking words "My tummy hurts.....my tummy hurts" but there is never a shortage of someone that has magic hands to rub it better, so don't worry too much.
I must dash, I have yet another platelet transfusion in a few minutes, I think I must be emptying the blood bank at Sheffield on my own at the moment. So if you do find yourself with some spare time, would you mind donating some, to make sure they don't run out.
I will update you all again tomorrow.
24th September 2006
I am still feeling very poorly at the moment, on top of everything else, I am really suffering with sickness due the yucky green bile in my tummy. A special bile bag has now been fitted to my NG tube to try and drain the majority of it away.
Last night I was given oxygen as a precaution, as the machine kept beeping which meant my breathing had dropped a little. Everyone is keeping a very close eye on me and taking really good care of me here in hospital. I thought Neuroblastoma was bad but let me tell you, this VOD is just as nasty and it's quite scary.
Yesterday I had yet another platelet transfusion, and have been told that I will be having a blood transfusion later today.
I'm afraid that I'm unable to offer you a picture of my smile just yet, but thought you may want to see just how bloated my belly has become, especially as it may help someone else who is suffering with the same thing out there.
All I can do is wait until the scan tomorrow, and prey that there has been some improvement and that my liver is able to repair itself.
In my 3 short years I have faced my hard times, but tomorrow could be the biggest of them all, so please join everyone in wishing and praying that I hear the positive news that I want to hear.
I need your positive thoughts more than ever.
22nd September 2006
Usually I wake up in the morning and put CBeebies on the TV straight away, not this morning though, I just want to rest in peace and quiet. I feel so poorly, tired and miserable.
It doesn't help when people keep sticking needles in me every few hours, I know it has to be done and will let them do anything to get me better, but I'm not enjoying the ride if you know what I mean.
I was so poorly yesterday and everyone was really worried, I'm wired up to so many machines at the moment and it seems that there's always one of them beeping away. One of them is attached to my finger and goes crazy every time I get upset, so I'm slowly learning if I don't get upset it stays quiet.
I am unable to drink anything at the moment, but getting a little comfort from a little stick with a pink sponge attached to the top which looks like a lollypop. I dip it in water and keep my lips moist.
My belly has swollen up even more and looks like it's going to explode, but I'm on morphine now though so I am not in pain like I was before.
I am also on some special medicine called defibrotide which I am hoping will help my Liver get better, which is the only organ that is able to repair itself.
I am afraid there is nothing anyone can do but wait until at least Monday to see if there is any improvement, but on a positive note my blood tests have come back and are much more promising than yesterday.
21st September 2006
Everyone seems so sad and worried at the moment, and despite these constant pains in my belly, it is still left to little old me to provide the laughter around here. As soon as I see a few sad faces, I pull some of my funny faces and have everyone laughing so much they forget their worries for a few moments.
That is something that we can all learn from the inspirational Christi Thomas who taught us all to fight every step of the way with a smile and that's something this gal intends to do too.
Back to the problem with my liver, the condition I have is called V.O.D., I have learned that most children have a reaction to the chemo Melphelan, known as V.O.D (Veno Occlusive Disease). This is related to the toxicity of the drugs and the liver’s proper function. V.O.D. is unpredictable both as to whether a child will develop it, when it will develop and its degree.
VOD occurs when the liver gets bunged up and therefore can't operate properly. In most cases restricted fluids help the liver get better of its own accord but in extreme cases it is life threatening.
This is why my stomach became swollen, continual vomiting, diarrhoea and I have endured terrible stomach pains that resembled contractions.
Please cross everything that you have that my liver is able to repair itself.
I have another scan this morning, I will update later today with the results.
I have just received the results of the scan and can confirm that I have Moderate to Severe VOD and the next few days will determine what will happen.
Thank you so much for the hundreds of e-mails, guestbook entries and positive thoughts coming my way, every single one is appreciated more than you can possibly know.
The next five days will be critical for me, so please please keep them coming, we need your positive energy more than ever before.
20th September 2006
The day started with the very sad news that the inspirational Christi Thomas who helped inspire me to document my own battle against this nasty disease has passed away, and I then received news that nobody here could ever prepare for.
The last few days my belly has become a little swollen and yet very tight, I have been kept awake all night with nasty pains in my belly that won't go away. These pains are now really bad all the time and pain relief that has been given to me, does not seem to do anything.
My mummy was so worried that this nasty cancer may have returned or that something was very wrong she asked for an X-Ray to be performed as a precaution. This X-Ray showed lots of liquid in my belly which was not draining away but thought not to be too serious and it didn't look like the cancer has returned.
However then I was told the really bad news, my liver is not working and the next 48 hours or so would be critical for me, it could get better but equally there may be nothing that they can do if it gets worse. Everyone around me is holding back the tears and trying to keep me smiling, but I can tell they are all so shocked, upset and terrified of the unthinkable that could happen.
The cancer may have gone, but my body is struggling to cope, and we won't know until the next few days if my liver can repair itself or not. We can do nothing but wait for 48 hours to see what will happen.
I better go now as I need yet another platelet transfusion.
Every single person that has ever visited this site, read my journal, cheered me on, I need your help and positive thoughts more than ever before. No matter where you are in the world, what your doing please send them good vibes my way, I only ask because we all know that it can make a difference.
16th September 2006
The Doctors came to see me this morning and said my counts were all fine and the only thing keeping me in hospital now is my overnight TPN feed, which will be slowly reduced over the next few nights.
That means you can go home in the daytime if you wish? errrrrm YES YES YES!
Louis was so excited and couldn't wait to play games and for me to get up to general mischief with him, and I had so much fun back at home.
Aunty Kerron and Uncle Gordon came to see me to which was nice, by 6pm though I had worn myself out, I think I had so much fun my little body needed a much needed rest so headed back to the hospital.
If all is well, I can come home again tomorrow, it's been a year since my battle begun, let's hope this nasty cancer has now gone for good!
15th September 2006
I awoke this morning with a little dry blood in my ears and nose again, they sent my bloods away for testing which revealed my platelets were only 5! A quick call to Sheffield and they sent me some over for a transfusion.
The blood tests revealed something else though, guess what? I HAVE NEUTROPHILS!
This means that I have an immune system again, so no more isolation for me, when they removed the sign from the door to my room, it felt like the Berlin wall coming down.
I popped on my Mini Mouse slippers and headed straight for the playroom, then it was time for a good walk around the ward and stretch my legs.
It's been just over 2 weeks since my stem cells were put back in, I was expecting to be in isolation for 5-12 weeks, so as you can imagine, I am very very happy.
The Doctors seem amazed by how I have bounced back, never undestimate me and my fighting spirit I say.
14th September 2006
As you all know by now, I am a very positive person that always looks on the bright side of everything, but sometimes that is so hard, especially in a week that I have heard such terrible news. The kind of news that breaks my heart.
I have heard that Abbie Shaw last week lost her battle against Neuroblastoma, words cannot express our sadness here, and I send all the love that I have to Abbie's Family.
If your reading this, and feel the same as I do, we should all make a promise together, to do everything within our power to make a difference against this nasty disease.
Maybe just maybe there is some good news on the horizon as Our friends at Georgie's Fund have recently discovered the Cancer Vaccine Institute http://www.cancervaccine.org.uk/ basically they are researching into cancer vaccines and are researching into new treatment for Neuroblastoma, by taking a bit of the tumour making it safe and injecting it back into the body, getting the good cells to recognise the bad cells and getting our bodies to destroy the cancer itself. They are a fairly new charity but are based at St. George’s Hospital, London as well as working closely with the Marsden.
They are starting trials this month with Osteosarcoma, Rhabdomyosarcoma and Neuroblastoma patients. The good thing about this trial is that there are very little side effects apparently as it’s using the bodies own material rather than toxic drugs.
If you have any questions or how to help, please contact Georgie's Fund who are always happy to help.
It's very early days, but I wanted you to know all the hard work that's going into beating childhood cancer and once again mostly by parents.
Remember, Together we can make a difference.
12th September 2006
You will be very pleased to hear that I am feeling a little better, and my wide smile has returned.
The dreaded diarreah that has made me so ill, is beginning to ease and I am now even able to sit up in bed and play some games, how cool is that eh ?
The doctors are delighted with my progress too, and say I am doing amazingly well, and my recovery rate has surprised them.
On a downside, despite my platelet transfusion a few days ago, my count has come down again quite quickly, and this morning I noticed some dry blood in my ears, which rang alarm bells of very low platelets as when they drop very low, I will bruise very very easily and run the risk of constant bleeding from eyes, ears, nose or mouth. A quick blood test revealed they had dropped to only 6! The average is 200-400 for a healthy person.
Yet another platelet transfusion for me today then, however I am slowly seeing the light at the end of the tunnel, it may take some time but watch this space because this girl is on her way back to happiness.
9th September 2006
The last 4 days have been quite nasty, as expected my appetite has disappeared, so I am now back on my TPN feed which will keep me strong.
In a typical 24 hours I have been getting through 30-40 nappies, which should give you some idea of just how poorly, tired, sore and fed up I have been feeling. I was so sore one day, I couldn't sit up in my bed without shouting ouch! ouch! ouch!
The constant diarreah is caused by the chemotherapy, which had damaged my stomach lining, so I now have to ride the storm until my body repairs itself, I'm being given plenty of fluids to ensure I do not get any worse, so don't worry too much about me.
I also had a problem of very low blood pressure and a very fast heartbeat, which worried everyone for awhile but after some special medicine, it is now back to normal. I say normal, but that's probably stretching the truth a little as my blood pressure seems to change every few hours.
My temperature has hovered around 38 or higher, and I have had both a blood transfusion as well as a platelet transfusion to put some colour back in my cheeks as my counts had tumbled.
If that is not enough, I gave everyone a little scare when my blood tests revealed I had a dangerously high potassium level, so my TPN was cancelled for a night as it contains potassium. The following morning guess what happened? That's right my potassium level was very very low, so TPN was rushed back up again, and it has been fine since, so think that one at least was a blip.
As for me, I have been feeling so fed up and teary, as would most people going to the toilet 40 times a day, but I still got my smile and I haven't forgot how to use it. This gal is made of strong stuff, and sure things can only get better now.
My next goal, is to get back into that playroom, and out of isolation, this caged bird needs to spread her wings.
5th September 2006
Sorry for going quiet on you all but things have been very tough for me to say the least. I am now neutropenic which means that I have low Neutrophils (White blood cells which fight infection).
I feel very poorly day and night and find myself just lying down feeling quite sad, my moods are all over the place too as one minute I can be smiling and the next minute I am in tears, I just feel so low and communicate through nodding.
Diarrhea is proving to be very nasty at the moment along with my little tummy hurting so much, and a temperature of 39.5. To be honest with you all, It's beginning to get me down, last night I got through over 20 nappies which gives you an idea of just how poorly I am and I didnt get any sleep at all. Things always seem worse when you can't get any sleep though don't they?
If all that's not enough, I awoke this morning after an hours power nap and my eyes are very red and my eye lids are swollen, so you can forget seeing any pictures of me for a few days yet, after all a girl likes to make sure she looks her best.
We knew this bad stage was coming, and I just have to ride the storm as my body slowly regains it's strength and recovers from this treatment.
What keeps me going is knowing that despite being so poorly, I know the only thing really suffering is that nasty disease called Neuroblastoma, and my strength now will ensure that I have beaten it once and for all.
2nd September 2006
My urine is clear again just like the doctors told me it would be, which is very good news and one less thing to worry about.
Last night I had very little sleep, as I was suffering with some sickness and diarrhea but the I was given some medicine very quickly which helped me feel better.
Although I had little sleep and felt quite poorly, I awoke with the biggest brightest smile again today and have enjoyed making the nurses laugh.
I have just found a video of me when I was in Sheffield, would you like to see it?
Oh go on then!
1st September 2006
My urine was very bloody still last night, so they sent away a blood test to check everything was ok, and I am very pleased to let you know that everything is clear.
It was explained that when the stem cells are given back to me, there is also a liquid that is not required and my body was simply disposing of this liquid that was not needed. I will be hooked up for the next 24 hours to constant fluids which should flush my system and make my urine a much more reassuring clear colour.
As my results had all come back fine, they said I could come back to Nottingham QMC for the dreaded isolation part of my treatment, I am not neutropenic yet, but it is expected to hit any day now.
All this meant I could go for a really cool ride in an ambulance, which was great, and cheered me up a little, as I am starting to feel poorly now, but I knew this was coming and have had a great week.
I would just like to thank everyone at Sheffield for looking after me, especially Allison yesterday who helped me through a very difficult day. Also a huge thank you to everyone at PACT House, who made sure we had a comfortable stay in Sheffield.
As for me, I'm back at QMC and looking forward to seeing my old friends, and sending people to the playroom on my behalf of course.
31st August 2006
Started the day in the play room as usual, and I was hooked up to that machine again, so they could give me my stem cells back. These were in 4 bags I think, which were given to me separately.
Several minutes afterwards, there was a very strange smell in the air, it seemed to be a crazy combo of sweet corn, crab sticks and errm tomato juice. Let me tell you it's pretty yucky, or so I am told.
Here's some Stem Cells, I prepared earlier.
The smell is very similar to garlic in which everyone can smell it a mile off but you, every room I walk in quickly filled with the smell of my stem cells as the odour oozes out of every pore in my skin, but I cannot smell a thing, and after seeing the reaction I get when walking past people I am quite happy about that.
When the 3rd bag was entering my system, I felt really really poorly and upset and started being very sick, followed by wee wee's that looked like a very dark black current juice, which freaked everyone out a little.
I was so upset, so the doctors gave me some morphine, which settled me down for the night, and they will monitor my urine very closely.
30th August 2006
That's right kids, fingers crossed and all that, but I should have seen the last of the real nasty chemotherapy
Tomorrow I will receive my stem cells back, and suspect that, this is when things will begin to get a little nasty and frustrating as I will be in isolation, but right now I'm having a blast, and wearing everyone out from 7am until 7pm.
I am a familiar face round here now, and been seen strutting back and forth to the play room after my many trips to the toilet, the play ladies here are fantastic and I must thank them for all their help and patience in making sure I have lots to do.
I made them smile today when I found a special Punch and Judy, puppet show toy kit. I prepared a great show and in my special Judy voice said "Hello Everybody!" somebody shouted back "What's Your Name?" in my special actress voice I replied "errrrm I don't know" It seemed to go down very well and the room was filled with laughter. Between me an you it was a rehearsed mistake, they always get the best laughs don't they?
I later gave myself a huge fright, followed by giggles as I caught my reflection in the mirror, I shouted "Mummy...Mummy come quick.............my hair is growing back a different colour, look at me"
Another day where I seem to have more energy than everyone around me, I just want to play, play and errrm play, and play I have.
29th August 2006
Last day of chemo today, and guess what???
That's right, I awoke this morning with the biggest smile on my face, took a sip of my juice and shouted delicious and nutritious!
Everyone here at Sheffield are fantastic and taking good care of me and making sure I never get the opportunity to say that I am bored, especially after spending yet another bank holiday in hospital.
I'm having so much fun, and rather than ramble on to you all, I am going to run off to the play room whilst they still let me.
Speak to you soon.
27th August 2006
Sorry for going a little quiet on you all, but it's been a little hard finding a wireless internet connection so I can update you on what's been happening.
I arrived in Sheffield on Thursday and I was shown to my own little room, everyone here is so nice and taking really good care of me.
Being hooked up to chemo is becoming a pain, I have completely forgot how restricting all those wires can be, especially when I am still feeling fantastic and full of energy.
However I'm a big girl now and have been seen pushing the chemo stand around the ward by myself, and if my legs get tired, I hop onto it, hold on tight and Mummy pushes me for a cool ride.
That's right you heard me right, four days into the treatment and I'm still singing, playing, smiling, and dancing. We all know it's going to hit me very soon, but until then I'm not going to sit around worrying about it, after all this girl likes to play.
Louis has been a great brother as usual, he really makes me smile and laugh out loud but being in hospital is slowly driving him nuts and started saying the dreaded words "I'm Bored" so he will be heading home today for a few days.
Enough of all this me, me, me! I have just heard some fantastic news and fantastic is an understatement!
My friend who I call my twin in Australia who answers to the name Kahlilla has just been given the all clear, her body is finally clear of this nasty disease. Word on the street is, she had her Hickman Line (Wigglies) removed from her chest, How cool is that?
A huge thank-you to all, who sent her positive thoughts and messages when she was so poorly, you see it really does prove that together we can make a difference.
24th August 2006
This girl has been having so much fun at home, and I have been keeping everyone very busy with my demands and boundless amounts of energy.
My appetite has returned too, as I am now snacking on a regular basis and have quite a sweet tooth now.
I have received so many cards and gifts from you all via Post Pals, I'm very sorry I have been unable to thank you all individually but you all know who you are, and the smile you bring to mine and Louis face is priceless. We love it when the postman brings us things to open.
I'm feeling fantastic, my hair is growing rapidly growing back too but I have one final date with chemotherapy before we get too excited.
My bag is packed and I'm on my way to Sheffield, I will be hit hard with chemo and then have my stem cells returned to me over the next week. It's going to be tough, but with you guys cheering me on, I just know I will be fine.
19th August 2006
You will all be glad to hear that, the Doctor's were able to collect just enough stem cells from me, which are now locked away in a big freezer somewhere.
We were then told we could go back home, and comeback next Thursday for the chemotherapy, they did warn it will be very tough and that I may take a little longer than average to recover from this final stage as my body has endured 12 rounds of chemo already.
We were in Sheffield with no transport, so hoped to arrange some patient transport with the hospital but there was some very crazy red tape politics where nobody wanted to take responsibility for me. Sheffield advised Nottingham that I am their patient, and Nottingham replied, I'm currently their patient!
I'm a busy girl, and no time for crazy games like that, so hopped onto a tram, and then headed for the train station, luckily there was a train about to leave so we jumped straight on it, but we had to buy the tickets on the train. Many of you know it is very expensive to buy the tickets on the train itself, I tried to use my cheeky smile, and celebrity status for the cheaper fair, but the man was having none of it.
Don't worry though, I didn't say the words "Do You Know Who I am?" we will save that one for the China White night club in London in a few years time.
I am still feeling fantastic, and enjoying every second of being at home until I return for this final stage next Thursday.
17th August 2006
I was awoken very early this morning and rushed to the hospital, only to be given some medicine that put me straight back to sleep again, I awoke with 2 big plasters on my back and a canular in my hand.
I know how Mr T must have felt in the A-Team, after drinking a glass of milk now!
It took me a few hours for me to wake up properly, and for my legs to work properly again, but despite my back being a little sore, I am fine.
Still singing, still dancing, still smiling, still running around playing, so all is well at the moment.
I now have an anxious wait until tomorrow to see if they collected enough Stem Cell's from me to put in the big freeze.
16th August 2006
Nothing to eat or drink from Midnight tonight as I am going to theatre very early on Thursday, so I'm going to eat loads until then and have a great time.
I hopped on a tram, in Britain's 4th biggest city (check me out eh) and headed for some ten pin bowling action and although some bad losers pointed out I had the bumpers up and a big device that guided the ball down the bowling lane, I beat everyone! That's right I won! I snatched victory from brother Louis with my final ball, that will teach him for poking fun at me leaving the cinema early yesterday. Hang on a minute Brother Louis? I know a song about that, do you know the one I mean?
I then went for something to eat, and have developed a taste for Coke, and chewing on ice cubes, but as you all know time flies when your having fun and soon had to head back.
Early night for me as I have an early appointment at theatre to keep tomorrow, and I don't mean at the Old Vic either!
15th August 2006
I returned to Sheffield hospital bright and early this morning and was hooked up to the machine for 4 hours again, with the hope of collecting enough stem cells.
I then found myself with a free afternoon, so begged Mummy to take me to see Monster House with my brother Louis, he loves monsters, which kind of means I love monsters too,
I ignored warnings that it may be too scary for me, I have seen the adverts and it looks great, and looked like the perfect film for me to see, on my first ever visit to the cinema.
Popcorn, sweets and cola were all tasted and I was having a great time and there were loads of other cool films coming soon that I want to see. Then the main feature started, Monster House, it started great and I was giggling loudly but the old man was quite scary and I didn't want to watch anymore, so had to leave and see Nana Pam who was waiting outside. I then fell asleep, whilst everyone else watched the movie.
Louis loved the film and still hasn't let me forget that I was a big scared girl, but I used the excuse I was just too tired.
When we got back to our accommodation, the hospital advised that they were unable to collect enough stem cells again today, so they will need to put me to sleep on Thursday, and attempt to take the cells though 2 big needles in my back and directly into my bone marrow.
It appears the 12 rounds of chemo have given my body a hammering so there's not to many stem cells hanging around at the moment, you think the stem cells had a tough time, you should see what happened to the cancer I say.
Theatre on Thursday sounds quite nasty but I have a free day tomorrow so putting it to the back of my mind for now.
14th August 2006
I arrived at sunny Sheffield at around 8am, and I was taken to my very own cubicle with a cool Scooby doo picture on the door.
My blood counts were fine, so I was hooked up to the huge machine I was telling you about on the 10th August. After several attempts to fit a canular in my hand, the doctor had to admit defeat as it appears my veins had gone walkabout, I'm a brave girl but I shed a few tears, but sure some of you would if you saw the size of the needle going in my little baby soft skin.
Plan B was to try and collect the stem cells via my Wigglies (The Little tubes coming out of my chest)
After 4 hours I was allowed to roam free, and much to my delight was allowed to leave the hospital for the night and head to our accommodation which was provided by the very nice people at PACT.
Now for the science bit. From what I can gather they need to collect a stem cell count of 3, and we received a phone call to advise that they managed to collect 0.26 today, I'm no expert but guess that's not too good.
12th August 2006
I woke up this morning, looked in the mirror and kept thinking I look different, but couldn't work out what it was that was so different. Then I noticed my eyebrows and eyelashes were growing back, there was also a five o clock shadow appearing on my head!
Typical, just as my girlie locks are finally on their way back, they will be disappearing again after next week's final chemo.
Another visit to the hospital today for the dreaded GCSF Injection, I cried a little because I'm not a big fan of having needles in my thigh, but I did get a cool sticker, so it's not all bad.
Don't go thinking I'm feeling sorry for myself, I am not going to Sheffield until Monday, so it's party time, I stayed up until 11pm tonight singing, dancing and eating cake, enjoying every second of being at home. For a girl that's poorly, I seem to have more energy than anyone in the house!
Check out me and Louis having errrm a crazy little dance.
10th August 2006
I went all the way to the hospital in Sheffield today, and everyone there was really nice and they explained everything that they will be doing over the next few weeks, hopefully I will be able to have my treatment there and then rush back to my friends in E38. However it all depends how my little body copes with it all as it going to be very tough.
Today saw the return of the dreaded GCSF Injection, and I have to have this injection into my thigh everyday until Monday, I don't know about you but I hate Needles!
It is hoped that these injections will help my bone marrow produce loads and loads of stem cells.
There are a few different scenarios that could happen next week, but the plan to begin with, is for me to return to hospital on Monday and the nice people at Sheffield will take these cells using a huge machine that looks like something from Dr Who's Tardis.
The machine separates blood-forming stem cells from the other components of whole blood and returns my red blood cells, white blood cells, plasma and platelets.
Hopefully they will be able to get enough cells, if they cannot there will be other options but we will cross that bridge if we come to it.
Once they have my Stem Cells, they will put them in a big freezer, but not the kind that I keep my fish fingers in!
Whilst my stem cells are in the deep freeze, I will be having some quite nasty and very intensive chemo, which is expected to make me very poorly.
When my body has been blasted by the chemo for one last time, they will defrost my healthy stem cells and put them back in my body, so it's like a bone marrow transplant but with my own bone marrow going back in. Hopefully that makes sense.
So there you go, a very quick lesson on Stem Cell Rescue, because you have been so good and sat down listening to my little lecture, I may just treat you to a video of me and Louis doing a crazy dance tomorrow, would you like that?
As for me, I have just seen a Freddy Frog in the fridge, with my name on it, mmmmmmmmmmmmm
9th August 2006
I have a little update for you all, I am off to Sheffield hospital tomorrow, the Doctors are going to explain to me everything that is going to happen with Stem Cell Rescue, so stay tuned over the next few days.
It sounds like, we are going to be moving forward now quite quickly, so I have made sure I get some extra fun under my belt before it all starts.
I have enjoyed a great day on Shipley Park again, and lot's of singing, laughing and dancing, it's so good being me!
5th August 2006
I am still waiting to hear from the hospital, on when my Stem Cell rescue will begin, so everyone is a little nervous every time the phone rings.
As for me, I'm enjoying every second being at home, keeping Louis from getting bored in his 6 week summer holiday. Yesterday we enjoyed a great day on Shipley Country Park. It's great being outside and have even been playing in the garden until quite late at night. I love summertime, it's great!
Remember my friend called Kahlilla in Australia? She sent me a beautiful picture off herself hugging a kangaroo, which was so nice, but then I had another lovely surprise as the postman brought me a special present, can you guess what it was?
That's right, it was the Kangaroo, it's so nice and I carry it with me everywhere. I asked my bossy brother Louis to help send her a huge thank you, and you can see it by clicking below.
If the Video does not play, click here and download the FLASH Player.
I need to ask you all a huge favour again, I'm afraid that I have just heard another little girl here in the UK has been diagnosed with Neuroblastoma. The positive thoughts from around the world we have received here has helped us so much, and would like you to offer the same to the family of little Ariella.
Please drop by and say a big hello to her at http://www.ariellaleah.blogspot.com/
31st July 2006
Wow, I've had a fantastic day, and don't know where to begin, Louis and I have had so much fun and a little mischief thrown in for good measure.
Mummy took us both bowling today, and we had such a good time, they even found some bowling shoes that fit me, and I did look quite cute, even if I say so myself.
To begin I had a special guiding device for little kids so I didn't have to throw the bowling ball, but as I got the hang of it, I demanded to have a proper go, I'm a big girl you know!
Both of us were quite competitive but had so much fun and soon got the hang of this bowling malarkey.
When we finished our games, we enjoyed a cracking game of Air Hockey, when we got back home the fun didn't stop as we made up a new game, where we both pretend to pause, fast forward, rewind and play each other. I guess you had to be there but it was very funny.
I finished the day playing in the tent with my Walkie Talkies and wore Mummy out with my demands, such as, "Mummy, can you bring me my potty and some toilet paper................over"
Remember when I planted a sun flower seed, when I was poorly in hospital, it's just starting to flower now, what a fantastic day!
29th July 2006
I am still at home, feeling fantastic and preparing for next week, when the next stage of my treatment will begin.
However I want you all to cheer Nikki on today who is staying awake for 24 hours, updating her site every 30 minutes with stories of children like me, fighting Neuroblastoma.
What an inspirational thing to do! The word on the street is, she is going to write a few words about me too, so please send words of encouragement and make sure she doesn't nod off.
WHAT CANCER CAN NOT
27th July 2006
Last night I was so hot and sweaty, Louis thought it would be a great opportunity to stick coins to my head! I think he was trying to turn me into an alien from Babylon 5. Have a look at the pictures below and let me know what you think of my do it yourself disguise.
I have also included a picture of me enjoying a good old fashioned day out in the rare British sunshine and a picture of me and Louis in the now infamous tent.
I went to the hospital today and they seem quite keen to get cracking with the stem cell rescue, it's unclear yet if I can have it at Nottingham, or If I will have to move to Sheffield for awhile.
It was fantastic to see my friend Matilda, whilst at hospital too.
Today wasn't too bad, I had hourly blood tests and a few other tests, to ensure that I'm ready the next stage of treatment.
It's going to be a little rough, so keep them positive thought's coming my way, and once again we will get through this together.
I'm back home now and having a great time, don't worry as soon as I hear anything about when my treatment will start, I will be sure to let you guys know.
24th July 2006
The hospital called today with some fantastic news for me, guess what?
My test results have come back and they advised that my Bone Marrow is finally clear of this nasty disease called Neuroblastoma. How great is that?
We can now begin to move forward with Stem Cell Rescue which will be a very rocky ride, but I feel we got this cancer on the run now, so it's time to finish it off once and for all.
Louis has broke up for his 6 weeks summer holiday from school, and we are having so much fun together. It's great spending so much time with him.
He likes to think he is the funny one, but I make him laugh too, I went to the toilet earlier and I said to Louis "Hey Mister! Keep my seat warm for me!" He was laughing for ages. Girls just want to have fun too, and I think I proved my point.
We have put up a tent in the garden and pretend that we are camping, but I get a little scared at night so run back inside to Mummy's big bed.
It's a long hot summer, my bone marrow is clear, having so much fun and laughter with my brother Louis, it really doesn't get much better than this.
I'm so happy at the moment, and making the most of my time at home before I begin the next stage of my treatment.
Huge thank-you to everyone that sent positive thoughts my way, I really believe that it makes a massive difference and you have proved just that.
20th July 2006
Still no test results yet! However I am not letting it get me down, I have been much too busy having water fights with Louis in my garden and other various forms of mischief.
I'm still singing, dancing, laughing, playing and smiling at anyone that looks my way, after all that's what this crazy old life is all about eh?
A huge thank-you to Kirsty Casey who is helping make a difference by raising the profile of Neuroblastoma by featuring little old me on her website.
Please also send your
support to Nikki Rehmert who will be
participating in the Blogathon
on July 29th to help raise money for the Children's Neuroblastoma Cancer
Every hour 30 mins
for 24 hours, the girl has some stamina, so be sure to cheer her on and make
sure she doesn't nod off!
16th July 2006
I've enjoyed a fantastic weekend and hot endless summer days, man it feels good to be alive, feeling great and at home.
I did have a little scare yesterday though as my temperature hit 38 again, and I had to go to the hospital, however blood tests came back fine and I was given some medicine to bring my temperature back down again.
Between you and me it was just an excuse for me to pop in and see the gang and say hello to them all.
So apart from my brief hospital visit, It's been great being me, I popped out on my bike today and went to the park. Slides, Swings and climbing frames, I did it all and then cycled home again for a much earned Freddy Frog.
12th July 2006
Today is the day of my bone marrow test, Mummy made sure I had nothing to eat from midnight last night, and I went to the hospital early this morning. Even before Louis went to school!
I was then put to sleep with some special medicine whilst the Doctors, put some really big needles in both sides of my hips, to take a sample of my bone marrow.
I woke up feeling a little yucky and discovered two little plasters on me, where they had done the test. I have an anxious 2 week wait now for the results, so everybody cross your fingers for me.
We made it home, just in time to pick Louis up from school, and we have had so much fun yet again, we have each other in fits of laughter and also enjoy a few cuddles along the way too.
I'm feeling so good at the moment, and cant stop singing, dancing, laughing and running around the house, this girl is having a fantastic time at home.
9th July 2006
Sorry If I gave you all a little scare, after being so poorly again for what seemed like an eternity. However true to form, despite getting knocked down, I got back up, dusted myself down and my smile has returned.
I have been back home since Friday evening and loving every second, it's so nice to be back home with my brother Louis, he could make anyone smile and laugh with his antics. We are a fantastic double act together, and quite unique too, as we are the first comedy double act not to have a straight man!
All weekend we have been RUNNING all over the house and an exhausted Mummy was shocked at our staying power as we were both still awake and smiling, laughing, talking until midnight last night.
I have a few trips to hospital lined up this week, including my big bone marrow scan on Wednesday, but no treatment for a few weeks whilst we wait for the results, so I'm going to enjoy every single second, but you didn't need me to tell you that did you?
We are all preying that this scan, shows the cancer has finally decided to leave my bone marrow, so we can move forward with Stem Cell Rescue.
I always say that together we can make a difference, and it is my hope that in the very near future that both myself and my friend Kahilla in Australia can show the world that this nasty disease can be beaten. How amazing would that be?
Two girls on opposite sides of the world, born on the same day, being diagnosed with a very rare childhood cancer called Neuroblastoma at the same time, and given poor chances of beating this disease. Against all the odds we prove it can be beaten, that's our dream, and dreams do come true.
Keep sending the positive thoughts our way, and you will be amazed at what we can accomplish.
New Photo's have been added, and let me give you a huge thank you to everyone that sent gifts, cards etc via Post Pals, even Mummy got a gift, which she loved.
6th July 2006
I'm still in hospital I'm afraid, but I'm feeling much better now, and the only thing that is keeping me in is my overnight TPN feed.
The good news is because I have been feeling so good, I have been allowed home in the afternoons if I promise to come back at night. It's very tempting to do a runner, but I don't really think that would be in my best interests.
When home I have enjoyed going to the park, hitting the slides and swings etc and of course making lot's of mess with my favourite brother Louis.
If I'm really lucky I will make it home for the weekend, and I have so many people to thank for gifts that I have received and of course I need to share some more pictures with you.
2nd July 2006
I think that I've said this a few times now, but one of the few things that really annoys me, is when people start saying nobody cares anymore ESPECIALLY young people today!.
I have been contacted by a lovely girl called Hannah who asked me if she could help raise awareness of Neuroblastoma by featuring me on her website. She has spent a great deal of time and effort in creating the page and it made me quite emotional thinking how she did all this for me and children like me.
People really do care, and like I always say, Together We Can Make A Difference.
1st July 2006
Another nasty night for me, I'm afraid to say guys and dolls, I got through 10 nappies and if that wasn't enough my temperature spiked at 05:30am too.
I have lost all control down below at the moment and it's really getting down as I get so upset because there is nothing I can do to stop it, and a big girl like me doesn't like being stuck in nappies. I was very upset and could be heard crying saying "I'm going to toilet in my nappie" usually I'm shouting I want the toilet but I just had no control which is just the worst feeling.
My platelets have dropped as well so I am having a transfusion this afternoon.
Despite my stressful night, I did pick up a little today and had a fair amount of fun with Mummy and Nana Pam, we settled down for the big England game, but what a disappointment that was, and I do feel a little sorry for the guys. I think they may have done a little better with a female coach.......like me. I'm no expert but I don't think a 5-4-1 formation is the future do you?
Today has been filled with many up's and downs, sure there's been a few moments when I've been upset and maybe a little bit moody, but despite everything, this girl is still smiling and walking on the ward in my Tigger Slippers.
30th June 2006
I'm feeling so poorly and very tired after very little sleep last night because of being kept awake by nasty Diarrhoea and a high temperature.
Most of the day I have been feeling quite sad, teary and just plain fed up with myself but for a brief period I found my smile and felt like getting up to a little mischief. One of my favourite nurses Nikki was sad because she was moving to another ward for a few months, I think she is going to miss my smile.
I decided to play hide and seek from her, and she looked a little baffled when she couldn't find me but had her smiling in no time when she discovered what I was up to.
Apart from that and a few other snatched moments, I haven't been feeling my best today and a little miserable.
28th June 2006
Me and my big mouth, when will I ever learn eh? I'm only 3 so hoping you will let me off this once but yesterday I was feeling so good and I never thought what usually happens a few days after my chemo has finished.
That's right you guessed it, I'm back in hospital and feeling very poorly again. High Temperature, Sickness and Diarrhoea, all the usual suspects have appeared on the scene again.
27th June 2006
Hooray the Chemo has finished!
I am out of hospital at last, and feeling pretty good too. Sure I don't have enough energy to run a marathon and I have a few problems with sickness, but that doesn't mean I'm unable to sing, dance, jump, do forward rolls and generally have fun with a capital F.
Over the next few weeks I will have the usual tests and a little wait to see if this nasty disease is finally clear from my Bone Marrow. If I get the good news I'm hoping for then its time to move forward in my treatment with Stem Cell Rescue.
Enough of all the serious stuff, I have a few weeks with no treatment so this fun loving gal has got to get back in shape.
I have just received loads of parcels, cards etc from post pals, so I'm off to open them all, but I will try and post you some pictures and thanks to everyone tomorrow.
23rd June 2006
I'm still in hospital on the wonderful combination of TPN Feed and chemotherapy, which is not my cocktail of choice as a rule, but if it gets me better, I'll have another one for the road. Whilst on my treatment I have discovered the fine art of multi tasking and can now, do some colouring with my favourite crayons whilst watching a Mr Men video.
Despite being hooked up to machines for 12 hours at night, the doctors have been so impressed by my happy go lucky smiley self that they have been letting me go home in the daytime, which makes a huge difference to me.
To celebrate yesterday, I was seen doing roly poly's or as some people call them forward rolls all around the house, maybe I will be a gymnast when I grow up.
My favourite girls from the play room, Tanya and Catherine, brought me a really cool England teddy bear and always keep me smiling so I never have time to feel sorry for myself.
There is a girl in the bed next to me called Tamara at the moment who is a little older than me but very poorly too, she made some really cool England flags for me, so I made her a little beanie baby toy cat for her, we are keeping each other smiling. Why don't you make someone smile today? it's a great feeling! Maybe this acts of kindness vibe could catch on eh?
Awhile ago I asked you all to drop by and visit my friend Kahilla in Australia, and you all did me so proud by doing just that. She's doing fantastic at the moment, so a huge thank you to all of you that sent her some positive thoughts, it really does make a difference.
As I call her my twin, I'm also cheering Australia on in the world cup now too, a girl modern girl likes to edge her bets after all.
I also had a visit from Mummies sister and her husband Gordon, who have just had baby girl called India, I love babies and made sure I had my picture taken with the little cutie, so watch this space.
The last part of my chemo, means I will be hooked up continuous for 48 hours so I'm in for a rocky weekend, but it's amazing what you can handle when armed with a song and a smile.
19th June 2006
So sorry for going quiet on you yet again but it's been a crazy week and what you could call the best of times and the worst of times.
I have been feeling fantastic and been having so much fun, but due to the amount of weight I have lost and my appetite disappearing I have been in hospital every night for a 12 hour TPN feed to build me back up again. The good news is that I have been able to leave hospital in the morning and enjoy the daytime at home.
There is so much fun to be had at home, and I really do feel great. I have been singing, dancing, playing and soaking up the world cup atmosphere but from 6pm, it's back to the hospital for 12 hours so I haven't had too much time to update you all on what I have been up too.
As I am feeling so good, you know what that means right? You got it, I have to start 7 days of intensive chemo today, so I guess I'm going to remain in hospital for awhile yet.
I am hoping this will be my final course of chemo, when it is finished I will undergo the usual tests and scans to see if this nasty disease has finally been cleared from my bone marrow. If I am given the clear, it will finally be time to move forward with my treatment and undergo stem cell rescue.
Another crazy week ahead of me, but this girl is still smiling and more determined than ever to beat Neuroblastoma, and to cheer England on to World Cup victory of course.
14th June 2006
I'm still at home! I have been eating and drinking very little though, which has had everyone worrying about me. The doctors said if I didn't begin eating soon, I would have to stay in hospital for over night feeds via TPN.
I have been losing a little weight too, but I have been slowly feeling a little better over the last few days and although I'm not eating as much I should do, my sickness is fading which is making life easier,
Although, I have been a little Diva and been very demanding with my Mummy, I have had some great moments at home, I just love entertaining everyone with my dancing, singing and one liners.
Louis has always been the funny one but I'm giving him a good run for his money and we are quite a good double act at the moment. Wherever we go, we manage to put smiles on peoples faces with our antics.
I have been feeling very up and down, but my moments of sweetness and light make up for all the bad stuff so have no fear because this little girl still knows how to smile and dance every day.
It's great to be at home and doing things any other 3 year old girl would be doing, the simple things in life make me so happy.
10th June 2006
What a week! I have been feeling so ill, but I'm in good company this time, because that nasty virus that I had, also wiped out Mummy and Louis too. All 3 of us have been very sick, so things have been a little messy but we are all starting to feel a little better.
I have a new friend called Lilly who I met at hospital, she's 2 years old and she has recently had an operation and now starting chemotherapy. We get along so well and love playing together as well as getting up to mischief. Yesterday I was feeling so sad and down, and she came to my bed with some stickers, she put the smile back on my face and want her to know, that I will never forget that, will return the favour one day.
Although I am not eating much at all, the kind Doctors have said I can go home for a few days to rest, so guess what that means?
COME ON ENGLAND!
6th June 2006
My little body is struggling to recover after last weeks chemo and on top of that I have this nasty virus which doesn't want to go away.
The doctors ran some tests and they discovered the bug in my blood has grown even more, so I am now on a different set of antibiotics to try and clear it, once and for all.
Last night I was feeling very tired and weak and wanted to catch up on my sleep, but guess what happened? Every 90 minutes I awoke and was very sick, whilst suffering with the sickness I also had a very nasty and constant case of Diarrhoea to contend with. I will spare you the gory details but it was a very long and messy night.
Most of today I felt completely exhausted and spent the majority of the time feeling quite weak and a little sorry for myself in bed.
There is growing concern over the amount of weight that I have lost and continuing to lose, so I am going to be back on TPN Feed, which as you all know by now means I'm going to be stuck in hospital for awhile again.
Forget Rooney's foot, will I be able to make it out of hospital for a world cup face painting session in time for Saturday? To be honest with you, I fancy Wayne Rooney's chances more than mine.
Anyway, I really do feel tired, weak and a little sad, so I'm going to try and get some sleep.
4th June 2006
I awoke this morning feeling much better, I was able to sing and dance on my bed, without even worrying about wires and stuff like that. It felt fantastic, I just let myself go, I recommend you guys give it a whirl once in awhile, it's quite liberating.
I had the nurses laughing as I shouted at Daddy "Turn this off, I said I want CBeebies on now" as he tried to watch Sky Sports News, like a good boy he did as he was told.
The doctors think I may have some kind of virus, so I'm on loads of antibiotics again which means I have to remain in hospital. They are also a little concerned that I have lost some weight as I have stopped eating again.
Mummy was very worried about me when I had an allergic reaction to one of the medicines, but some other medicine put a stop to that. So much medicine, my little body is a walking pharmacy at the moment.
Although you could say, I have had quite a rough day, my smile has returned and have been quite chatty too, so this girl is well on the road to recovery again.
Now where did I put my England face paint ready for the World Cup on Saturday?
3rd June 2006
Me and my big mouth! my last words to you were "I should be back home tonight, so don't worry, I will be fine." After my blood and platelet transfusion on Friday my temperature went through the roof, so I have had to stay in hospital.
British Summer has finally arrived, the birds are singing, the sun is shining, everyone's in the summer wear and the lovely smell of barbecue's across the land comes through the window, but I find myself hooked up to machines in hospital. So a little sympathy for this girl that should be outside having fun would be appreciated.
I feel so miserable, weak and tired today, which is so unlike me.
Last weeks chemo has taken it's time to knock me down, but don't you worry, I always get back up again.
2nd June 2006
Guess who made it home for Bank Holiday? That's right gang, you will be pleased to hear that I made it home Sunday night, as soon as my chemo had finished.
Although delighted to home again and back in Mummy's big bed again, during a bout of sickness my NG tube came out again, and a nurse came round to my house for the dreaded process of having it put back in, which is just the worst feeling in the world.
Once the tube was back in, I got back to enjoying every second of being at home and playing with my cheeky brother Louis who is on half term break at the moment. The two of us have been keeping Mummy very busy and between me and you, I think we have both worn her out with our antics.
Although the chemo finished on Sunday, I am beginning to feel the effects of it, and starting to suffer with sickness again, whilst also generally feeling yucky and upset.
Louis has showed me a great way of getting rid of my stress, he's taught me how to play the drums! I hit the drum sticks together shouting 1....2.....1...2..3..4 and then bash the drums with everything that I have. It may not sound too good but it feels great!
When not playing the drums, I also love a good dance too, and everyone seems to smile at my latest moves which is reassuring, I just need to work on my Peter Crouch Robot dance now.
I'm off to hospital now as I think they are going to give me a blood and platelet transfusion as my blood counts have dropped. I should be back home tonight, so don't worry, I will be fine.
28th May 2006
Imagine my surprise when I was checking my guestbook today, to see all the wonderful messages of support from all over the world, when I saw an entry for a David Beckham, apparently his wife told him about me!
Either one of you guys out there are winding me up, or I have a famous friend. I have had so many e-mails from people saying that little old me inspires them, so maybe I can use some of my magic to inspire David and the boys to bring home the world cup for me this summer. If that works, I will get to work on a Spice Girls reunion, so watch this space.
For my magic, all I ask Mr and Mrs Beckham is a signed picture of you both for me and my cheeky brother Louis. I will also forgive you both, for not sending me an invite to the World Cup Party.
As for myself, I have spent every bank holiday since Christmas Day in hospital, so this Monday won't be too much trouble, all I need is the August Bank Holiday for the full set.
You may notice despite being on Chemotherapy for the last 6 days, I'm quite jovial. Well I have very good news for you, I have been coping so well and getting through this week with my cheeky smile.
Don't get me wrong, this Chemo malarkey is no fun, but I feel we have this nasty cancer on the run now, and these extra rounds of treatment should finally do the trick.
I'm feeling great after my holiday, with my batteries now fully recharged, and if this cancer wants a fight, it's picked the wrong girl to mess with.
26th May 2006
First of all let me tell you all, that you guys are the greatest, thanks so much for all the wonderful positive thoughts you have been sending my way and to my good friend Kahilla in Australia.
As for me, I have been able to come home from hospital after my chemo, and spend the night in Mummy's big bed, which has been pretty cool.
However I am slowly starting to feel quite irritable, short tempered and must admit to wearing Nana Pam and Mummy out with my sometimes crazy demands, but they are fantastic with me and very patient as they understand it's really not my way at all. In reality it's just this nasty medicine making me feel a little moody.
Despite a few mood swings and demands, I'm still very active, smiling, singing and dancing, so don't worry too much about me at the moment.
It's bank holiday weekend, but I'm sorry to say that I am just packing my bags to spend all of it in hospital as I will be hooked up to TVD chemotherapy all weekend.
My advice to you all is enjoy your bank holiday and do something exciting rather than shopping, washing the car or mowing the lawn etc Why? because that's what I would love to be doing, so If I can't be outside having fun, make sure you have a great time for me.
I have a rough week ahead of me, but with your positive thoughts and support, I know I will be just fine.
24th May 2006
I have received my results from the hospital and I am afraid to say there is still evidence of this nasty disease in my bone marrow. However on a more positive note, the cancer cells have shrank, so the chemotherapy is still working.
The doctors have decided to give me another 2 rounds of TVD Chemotherapy (each round lasts for 7 days) and I will then have the usual tests and scans to see if this stubborn disease has finally left my body.
I began the treatment on Monday, and still feeling fantastic at the moment but have a feeling things could get quite nasty again next week, so I'm afraid I will be asking for your support and for you to send some positive thoughts my way.
21st May 2006
Everyone is having trouble keeping up with me at the moment as I have so much energy and loving every minute of it. I feel fantastic, and cannot express to you enough what a huge difference my holiday has made to me.
I went to see my cousin Dean get christened today in church, so I put on my best pink dress and even joined in on a few of the hymns. It was great to be playing with other children afterwards too.
I have a new catchphrase which always makes people laugh and breaks the ice at parties, which is "You're a Lightweight. You're fired!" I'm sure I could bring a smile even to Alan Sugar's face at the moment, I really am on top form, even if I say so myself.
We are still awaiting test results, but I had a call from the hospital asking me to see them tomorrow, as they want to give me another week of TVD chemotherapy, as a precaution whilst we are waiting for the test results. I think Mummy has a few questions to ask first, but I will let you know how I get on.
20th May 2006
I'm back from my fantastic holiday at Malcolm Sargent House in Prestwick, Scotland. We all had the time of our lives thanks to CLIC Sargent who provide a holiday to remember for children and young people who are fighting cancer throughout the United Kingdom.
The accommodation sits directly on the seafront, offering breathtaking views of the Firth of Clyde and the Isle of Arran, which is an inspirational setting whatever the weather.
The people there did everything possible to keep us smiling and entertained and even my brother Louis never once had a spare moment to say he was bored like he sometimes does. There were so many planned activities, we were both excited to be enjoying ourselves and being on holiday together.
14th May 2006
Sorry for disappearing on you guys for a few days but I have been having so much fun and feeling on top of the world at the moment.
I had my scan on Wednesday which will show, if the TVD chemotherapy has cleared my bone marrow of this nasty disease. I have a very anxious 10 day wait for the results of this test which will determine if I can proceed with stem cell rescue or have to endure even more chemo.
Rather than sit around worrying about these results, I am going away on holiday for a few days and going to hit the beach with my brother Louis. This time next week I should have loads of cool pictures to show you of me having fun with a capital F.
Whilst I am away I want you all to do me a massive favour, I don't ask much from anyone but my friend really needs your support and positive thoughts at the moment, so please send her a big smile.
On the other side of the world in Australia, is Kahlilla Blyss, I call her my twin, she was born on the same day and year as me, she looks a little like me and was diagnosed with Neuroblastoma Stage IV around the same time as me.
Kahilla is currently undergoing stem cell rescue and having a very tough time, please send your support to Kahilla and her family.
Click on her pic to visit her.
You all never fail to make me smile, so please do the same for my friend and her family.
7th May 2006
WOW! Look at all these presents!
Daddy's friend Simon came to see me and brought with him loads of gifts and cards from all over the world via Post Pals, thanks so much for thinking of Louis and me, we both get so excited when all the post arrives.
The fact that people all over the world are cheering me on all over the world, makes me more determined than ever before to beat this nasty disease.
You will be pleased to hear that I am having a great time at home still and haven't stopped playing and enjoying myself for many days now.
A Huge Thank You to
Liz Cook, Lorna Rogers, CMP Forum Rakers, Angela, Kate Dee, Cherie from Boynton Beach, Florida, My favourite dog Mabel, The Hatheways in Indianapolis, Doyle Family from California, Laura Jackson in Spain, Mike & Rachael Stafford, Nicky (the Freddo Frogs were yummy), Julie Barrett, Victoria Tremlett, Elena, Marco & Ginny from Italy.
I hope I've remembered you all, but please forgive me if I haven't thanked you personally, but when Louis and me are opening all our presents we are guilty of getting a little over excited.
I wish you could all see the smile that you put on both of our faces when we receive an e-mail, postcard or gift from anywhere in the world, you are all amazing.
Remember to say hello to my other brave friends at Post Pals if you have a few moments to spare.
6th May 2006
I'm very sorry for not updating you all on my exploits for so long but I have a very good reason for my delayed update. I have been so busy having fun and being a typical 3 year old girl.
Please don't ever think of me as just a brave poorly girl, it's been so nice to forget about hospitals, blood tests and my illness for a week and simply enjoy having fun with a capital F!
Pink Lipstick and Blowing Bubbles Enjoying The Sunshine
I have not had any scans or tests yet but it is hoped that if my blood counts have risen on their own to normal levels, that I will have the many tests next week. We then have a very anxious few weeks waiting for results, but rather than worry about stuff like that, I going to make the most of feeling great and enjoying the sunshine.
I cannot tell you fantastic it has been spending time with my brother Louis, we get up to so much mischief together and he makes me laugh all the time. He's so cool! Don't you dare tell him I told you that though.
The Photo's section of the site has now been updated, and I hear my brother Louis is creating his own webpage so will let you know tomorrow how it's going.
30th April 2006
Fantastic news guys and dolls! I have been home and back in Mummy's big bed since Friday night and loving every minute of it.
Mummy says I have worn her out, so I decided to help her out by washing the dishes. Even when doing boring house work, I still have time for a huge smile.
When you have spent a few weeks confined to a bed in hospital and hooked up to loads of machines, washing the dishes in my own home becomes a luxury believe it or not.
I haven't had any scans yet but if it's ok with you guys I want no talk of hospitals, scans, chemo etc for the next few days. It's a bank holiday weekend and time to concentrate on nothing but fun.
I hear Daddy's friend Simon is coming to see us later, as he has had a delivery of presents from you guys via Post Pals and I have been tipped off that my brother Louis has some gifts too, so I'm excited about seeing the look on his face.
My brother and I are a great team and he has been such a good boy, he has really enjoyed having me back home.
27th April 2006
OUCH! what a nasty week I've just had, but guess what? I got back on my feet, dusted myself down, put on my biggest smile, painted my nails and feel ready for fun, fun, fun again.
The 7 days of TVD chemotherapy really knocks everything out of me, but if it's cleared this nasty disease from my bone marrow once and for all, then it's sure worth it.
I had another platelet transfusion the other day because they dropped to only 4, which could have been quite nasty, as regular visitors to my site know what happened last time they were very low. I think Daddy still has flashbacks from that night.
You will all be pleased to know that the Diarrhoea has now finally stopped and so has my sickness, which means I can escape the hospital for the afternoon. I have to return to hospital this evening but plan to enjoy every second at home and secretly aiming for Friday night at home in Mummy's big bed.
25th April 2006
Although the chemotherapy finished over a week ago, it has hit my body quite hard and having quite a nasty time at the moment.
It all started with rapidly decreasing blood counts, high blood pressure, high pulse rate and constant sickness which is more than enough for anyone to handle, but nothing prepared me for a very nasty case of Diarrhoea for the last 3 days.
As many of you know, since the age of 2 I refused to wear nappies as I'm a big girl but I now find myself with no choice but to wear them, which alone upsets me, but having accidents in my nappy all through the night, around every 40 minutes is really starting to get me down.
I had a blood transfusion last night, my temperature has now gone back down to normal and my Blood Pressure is now fine, so I am hoping that when I come off my antibiotics, the Diarrhoea will stop too.
Hopefully over the next few days I will begin to feel like my old self again, and we can then crack on with all these tests again to see if this chemo has finally kicked the cancer out of my bone marrow.
Despite looking and feeling quite poorly, I have still been handing out my smile to certain people on E38, so don't worry too much about me, I will beat this and be jumping up and down on Mummy's bed real soon.
23rd April 2006
Brendan Devlin completed the London Marathon in a fantastic time of 3 hours and 38 minutes today!
Despite the cold and the rain, my hero not only completed the race in an excellent time but also raised so much money for the Neuroblastoma Charity Georgie's fund. If you click on his picture above you can see that he has raised over £850 from his Just Giving Internet Page alone.
Brendan now has the much harder task of collecting in money from sponsorship forms but is very hopeful he will make his £1500 target.
I will let you know how much he raises and more details on his big day very soon.
21st April 2006
I am very sorry for not updating you for a few days, but believe me I have very good reason as the happy smiley me has been absent for a few days and replaced with a sad teary poorly me.
Although the chemo finished on Sunday, the affects of this nasty treatment did not hit me until Monday, so most of this week I have been quite poorly battling high temperature, rapidly decreasing blood counts, high blood pressure, constant sickness and you thought you had a bad week!
My platelets had dropped to only 15 today, so I had a platelet transfusion and over the next few days my body should begin to get back to normal. Hopefully I will then get out of the hospital and back into Mummy's big bed.
Over the next few weeks, I will be having all those tests again and will have a very anxious wait to see if this TVD chemotherapy has cleared my Bone Marrow of this awful cancer. Please please cross your fingers for me and send some positive vibes our way.
However at the moment it's 11pm and my temperature has hit 39 again, so I'm going to have some medicine to bring it down again and get back to sleep.
Once I am back on my feet again, I will be sure to show you some cheeky pictures of that infamous smile of mine.
17th April 2006
It was so nice to wake up in Mummy's bed today and be able to walk downstairs, put CBeebies on the television and play with my own toys. The simple things in life make me really happy.
I enjoyed playing outside in our garden and even had a nibble on some sandwiches on a big blanket for my very own little picnic.
Then the bad news came, a phone call from the hospital advised that I have been near a patient that has just come out with Chicken Pox. As you all know I have had both Chicken Pox and Shingles so thought I would be safe from ever getting this again.
However I have no immune system like you guys and dolls out there, so Grandad Dave had to rush to the hospital to get some special medicine with I have got to take 4 times a day for the next 3 weeks.
Rather than moan about it, I decided to make some cakes and spend some girly time with my Mummy.
Whilst Mummy was giving me some special milkshake down my NG tube, the cakes looked much too tempting, so I enjoyed both at once.
I am home again tonight, but will be back at the hospital tomorrow morning to check me over.
16th April 2006
Despite a week of chemo I am still in good spirits, I felt a little yucky this morning but soon picked up when I was given the keys to the cupboards in the playroom from one of my nurse friends. I felt quite important walking around with a huge bunch of keys, especially as they unlock doors to hundreds of toys. How cool is that?
I was quite happy opening the doors and locking them again, rather than getting to the toys though, my favourite cupboard was the one that stored all the craft and making thing goodies.
I went on to make a butterfly which I coloured in with felt tip pens and made it fly around the playroom. I also made a fridge magnet of a flower made of sequins. There was no stopping me as I was feeling all creative so I also made a necklace with bright coloured popper beads.
My favourite was lots of green and blue glitter. I Started putting glue on a piece of paper in picture shapes (butterfly and flowers) followed by sprinkling glitter on to make the picture. Glitter was absolutely everywhere and even inside my hospital bed.
I then loved rubbing my hands in it and getting all yucky but it all ended up on my head too and I was covered in glitter. It took ages to clean it all off and we had to change my bed but it made all the nurses laugh which made me smile too.
I was hooked up to chemo all day, and Mummy has to wheel the machine wherever I go on a big tall stand, but I learnt a cool trick from my old mate Chad, who used to be on E38. I like standing on the chemo stand while Mummy pushed me down the corridor.
You may all be pleased to hear that I have made a new friend called Lily who is little younger than me and was sat in a cot but we both liked to say hello and wave to each other. There is also a little girl called Poppy who is around my age who joined in the fun. with me.
All us girls including my good friend Freya had our dinner trays together in the playroom and encouraged each other to eat in a female bonding session.
Then came a fantastic surprise, my chemo had finished and the nurses said I could go home for the night and enjoy a night in Mummy's big bed!
What a great end to a lovely day.
14th April 2006
How often do you hear people say that young people just don't care anymore? Well next time you hear someone say that, please so me favour and send them my way so I can put them straight.
My guestbook has hundreds of entries from people under the age of 15 from all over the world and I have been so touched by young people's efforts in raising funds and awareness of this nasty childhood cancer.
Yasmin Austen was so moved by my story that at just 12 years old she decided to fundraise to help children like Samantha. Yasmin together with support from her friends and teachers at Park Community School raised over £100 by selling ribbons at school and by doing a sponsored walk in fancy dress. Our Yasmin was dressed as a duck! (Quack quack)
Hayley Gardner has been selling Georgie's Fund Wristbands to fellow students but when she went out for her 18th Birthday Party Night Out, she asked all her friends to put any money they were going to buy her a present or drink with, into a collection box to buy me something special.
At the end of the night, and many drink offers, the barman revealed £140 had been raised!
A huge thank-you to the youth of the world who continue to prove that together we can make a difference.
13th April 2006
I awoke with boundless amounts of energy today and jumped up and down on Mummy's big bed so fast and got a little over excited. I was going that fast than when I took a big heavy breath of air my NG tube came out!
As you all know, this means being held down whilst a nurse feeds the tube up my nose, down my throat and into my tummy, which has to be the most unpleasant feeling in the whole world. I hate it so much and my screams could heard through E38.
However once I got a sticker for being brave, I looked back and could see the funny side of it all. It was kind of nice for the tube to come out whilst having a fantastic time and not whilst being constantly sick like on previous occasions.
In true Diva style, I have been quite demanding and worn mummy out again, but I am still feeling great and still snacking on foods, so everything is pretty good at the moment.
I have some walkie talkies and make everyone smile by running around the house saying "Hello!.............................OVER......"
It's back to the hospital tomorrow for a constant 48 hours of chemo, so not looking forward to staying in the hospital again overnight after such a long break at home, but I guess it has to be done.
12th April 2006
Louis is off school this week, so it has been fantastic to spend all day with him and he even comes to the hospital with me, whilst I have my chemotherapy.
We have both been keeping Mummy very busy and I think we have worn her out, but she wouldn't have it any other way.
I think the chemo maybe slowly taking affect as I am beginning to feel very tired, teary and if I'm completely honest with you, a little moody and demanding. However don't get the wrong idea, I have also been playing laughing and smiling too.
Mummy was quite happy to meet the Nottingham Forest players at the hospital again today, they were really nice and gave both me and Louis easter eggs, but Daddy is worried this may turn my brother into a Forest fan and not a Derby County fan.
I'm just feeling a little up and down at the moment, but if you came knocking at my door, I guarantee that I could put a smile on your face within a few minutes.
I'm off now to sneak some biscuits from the kitchen, whilst nobody is looking.
10th April 2006
I enjoyed another fantastic weekend at home, and was even seen eating a few chips with tomato ketchup.
You may also remember sometime ago that I had planted some sunflower seeds in hospital, I have been a really good girl and watered them everyday and look how much they have grown already.
I went to the hospital today and began my TVD chemotherapy, which will last for the next seven days, I was allowed home afterwards for a night at home before I have to return to hospital tomorrow. I felt exhausted though and once home, I fell asleep in Mummy's arms and then went to straight to bed.
I get a feeling I have a rough couple of weeks ahead of me, but if it kicks this nasty cancer out of my bone marrow, then it will be worth it.
8th April 2006
Do you like my new jeans?
I am feeling like a million dollars today, and hopefully you can see that by looking at my big smile. I chose the outfit myself and was hoping you like my choice.
A nurse is coming to see me at home tomorrow, to check my blood counts again as they were still quite low last week, if they are back up to reasonable levels, then it will be time for my next round of TVD Chemo which will last for 7 days again.
The last round hit me quite hard, so I am really happy that I have had a good break at home and been given time to regain my strength. Despite getting over a bad case of flu, I have had an excellent few weeks at home and had so much fun with my cheeky brother Louis.
Although not eating great amounts, you will be pleased to hear that I am still snacking on foods which is not bad for a gal that went 5 months not eating anything orally.
You can see below that today I tucked into poached egg on toast, and washed it down with some of my home made fairy cakes.
Although still quite poorly, you can all rest assured that I am having just as much fun as any other 3 year old girl at the moment and loving every minute of being at home and getting to sleep in Mummy's big bed.
5th April 2006
I'm very sorry for not updating as often as I used to, but I have very good reason, I'm having a fantastic time at home and enjoying every minute of it.
I am beginning to snack on foods, little and often which is a huge step forward and my current favourite chocolate is Freddo Frog.
I even sent Daddy out to the shop when he returned home from work, I said get me a Freddo Frog NOW! over and over until he finally gave in and went to the shop.
Sure, I have had a few temper tantrums, and have been quite demanding but that's all part of being a typical 3 year old gal, it's quite refreshing to be a normal kid and not just a poorly kid.
My blood counts are still not high enough to begin my next round of chemo, so it's now been delayed until next week. I feel like my old self again, since being back at home, I have been really enjoying playing, catching up and being generally silly with my brother Louis.
I'm on top form at the moment, and if you were to pop round for a cup of tea, I guarantee I could have you laughing within a few minutes, I seem to have a knack for this comedy malarkey.
3rd April 2006
Good news gang! I have finally shaken this nasty flu virus which has wiped us all out over the last week or so. I have had a great weekend, and my smile is as wide as ever.
In one way, getting
the flu last week was a good thing, because I have had a little break from
chemotherapy and enjoyed loads of time at home.
My blood counts were still quite low, when checked on Friday but it was hoped they will begin to climb over the next few days. Once they have increased for 2 consecutive days, I will be able to start my next round of chemo again.
My batteries feel fully charged and I have been getting up to so much mischief with Louis and even enjoyed a little XBOX gaming. I'm multi talented you know!
I really have been feeling so happy lately, I feel ready for anything but more importantly ready to fight this nasty disease again.
If everything goes to plan I will begin 7 days of chemo, starting later this week, and then I will have to endure all the usual scans to see if this new treatment is having any positive effects on the cancer in my bone marrow.
Until then, I'm going now to enjoy some more singing, smiling and dancing. BYE FOR NOW.
31st March 2006
I'm very sorry for not updating you all the last few days, but Daddy has had a few computer problems and there is a big red X on our front door at the moment because we are all suffering with some good old fashioned British flu. At least it's not bird flu eh? you got to look on the bright side.
I am still at home and have spent most of my time in Mummy's big bed resting, but nobody is getting much sleep due to us all having a nasty cough, so we better not go to the cinema just yet. There's nothing worse than people coughing when trying to watch a film is there?
When not resting I have enjoyed spending time on my favourite website CBeebies I'm getting really good on the computer now, and even know how to drag and drop! I'm turning into a computer geek.
My chemo has been delayed until next week because of this nasty flu virus and my blood counts are still not great, so I'm just resting and getting ready for the next round.
I am off to hospital now, for a few tests, to see how I'm getting along. I will try and post the results of this later today.
27th March 2006
A few days ago you may recall me saying that my brother Louis had been feeling very poorly with a flu virus and also had a high temperature. Can you guess what I'm going to say next?
At 3am this morning Daddy had to take me to hospital as my temperature hit 39.6. Once we arrived, E38 ward very peaceful and quiet as everyone slept. Once I got settled down in my hospital bed, a doctor came to check me over, I tolerated all the usual stuff like listening to my chest, back etc but decided it was time to draw a line in the sand when he wanted to look in my mouth with a torch and a little lolly pop stick to hold my tongue down whilst he looked at my throat.
You guessed it I screamed the house down and woke up a few people, but hey what would you do if a stranger shined a torch in your mouth at 4am? no further questions your honour, the defence rests.
Blood Tests revealed that my levels were fine including my neutrophils which means my body is well enough to fight this virus, so it was time to have a little paracetamol for my temperature and then off back home.
I arrived back home to find mummy in bed with a flannel on her head, she has it too! I spent the rest of the day in bed with mummy and Louis and we all felt quite sorry for ourselves.
Hopefully we will all feel a little better tomorrow.
26th March 2006
Mothers Day & the Clocks Go Forward, Summer is Coming!
I am still feeling fantastic but Louis has a nasty cough and cold, he was quite sick last night and didn't get much sleep at all.
Today I have amazed everyone by my boundless amounts of energy, I have been running all round the house shouting "I'm running, I'm running". I've been sledging down the stairs again, jumping up and down, singing, dancing, laughing and smiling all day long. When you have been feeling so poorly and weak for so long, it makes you appreciate days like today. I feel so alive and want to shout it from the rooftops.
I made Mummy a Mothers day card and gave her some chocolates and I hope to sneak a few off her later. The nurse came round to give me my daily G-CSF injection again, OUCH! I could never get used to someone sticking a needle in my thigh on a daily basis, Could You?
Apart from that, I have enjoyed myself today and feel on top of the world.
25th March 2006
Louis showed me a great game today, we grabbed the biggest cuddly toys we could find and used them to sledge down the stairs of our home. I think we nearly gave Mummy a heart attack but believe me when I say it was the best fun you can have. Maybe you should try it too.
Louis went to his friend Georgia's 5th birthday party today, and had a great time, but he came back feeling quite poorly and had a high temperature. He even left his cake, so he must be poorly.
I have developed a taste for Starburst sweets and Lemonade to wash them down, so I may just be getting my taste buds back. After over 5 months of eating nothing via my mouth, who would have thought Starburst would have brought me back to my senses. Daddy keeps calling them Opal Fruits, but not sure what that's all about.
24th March 2006
I'm still at home and loving every second, I started the day with a stroll to my local park and was seen smiling, giggling and laughing whilst coming down the slide at top speed.
It was then time to make cakes, and of course lick the bowl out afterwards which is my favourite part of the whole cake making process.
The nurse came round to see me and gave me my daily G-CSF injection and must admit, I had a little cry afterwards, there's nothing worse than knowing what's coming. It didn't take me long to start smiling again though and was soon running around again.
Poor Mummy has not been getting much sleep as she has both Louis and me in bed with her and we are both quite restless at night. I think she likes being cuddled up to us though.
23rd March 2006
I enjoyed a wonderful night's sleep at home last night and awoke feeling great again.
I went to the hospital for a few hours to make sure I'm as well as I look. They seemed very impressed and have decided to let me go home until next Wednesday! A nurse will come round to see me at home to check on my blood levels etc.
My week of chemotherapy starts next Wednesday so that gives me plenty of time to pack as much fun as a 3 year old can handle.
Let the good times roll, and turn that music up!
22nd March 2006
My future is so bright, I got to wear shades!
Another day at home for me and I'm feeling fantastic and I don't even have to visit the hospital either. A great day of laughing, smiling and playing with all my toys.
21st March 2006
We talk about me every single day and that may be the reason that you tune in, but today is not my day, it's my brother Louis's big day, he's now 5.
He had a cool Scooby Doo cake, and he has asked me to thank all of you that spared a thought for my long suffering brother and sent him cards, e-mails and gifts, he loved the attention, maybe a little too much. Only Joking of course!
We all sang him Happy Birthday, and he had a huge smile on his face.
Special thanks also to his friends Georgia and Lucy who got him some lovely presents too.
I have really enjoyed being at home and spending time with him, and of course being together on his special 5th Birthday. For a perfect end to the day, I was able to stop at home in Mummy's big bed and was joined by Louis too.
20th March 2006
I'm feeling great and look how many presents you guys sent me!
I received so many cards and presents and could fill this page with names of people I need to thank so much for keeping me smiling, but you know who you are and how much I appreciate your kindness.
A special thanks must go to Elena, Ginny, Marco in Italy, Julie Barrett, Lydia, Christine Scott, Becky Butler, Victoria, Marina, Martele, Claire, Colin and Aimee-Beth Horton, Mash & Mable, Charlotte Davis, The Hatheways, Ingahill Andersson in Sweden, Kate Dee, Post Pals and Georgies Fund.
Every single person that sent me an e-mail, card or gift,
19th March 2006
No sickness for the last few days, means I'm a very happy girl at the moment, I was also able to escape the hospital for the afternoon which makes me even happier.
I have been feeling very good and almost back to my old self today, it's amazing the difference it makes to me, running around my house playing with all my favourite toys.
I also got to open ALL of the presents and cards that you all sent me for my birthday, there were so many that I had to enlist the help of my cheeky brother Louis. Much to his delight there were some gifts for him too which put a big smile on his face too.
I have so many people to thank, I may have to get Daddy to help me, and will get him to post some pictures of all the excitement over the next few days.
So much fun, laughter and excitement and there was some even better news to come, my next batch of chemotherapy to kill the cancer in my bone marrow will not commence this Thursday as planned but will be next week instead.
The last round really knocked everything out of me, and my blood counts have yet to stabilise without the help of blood and platelet transfusions so it has been decided to let my body recover for a few days. That sounds like a green light for some good old fashioned FUN, to me.
18th March 2006
This is 'Samantha' written in Japanese characters, how cool is that eh?
Many thanks to my friend Amanda Gillies in Tokyo, Japan for sending me this, hopefully one day when I have my long blonde curly hair back combined with my blues eyes and cheeky smile I will be able to visit Japan. I think I have what it takes to be "Big In Japan", hang on a minute, I feel a song coming on.
I escaped from hospital for a few hours and spent sometime at my Nana Diane and Grandad Dave's house who have some very cool toys, I've not seen in awhile.
You will be pleased to hear that I have been feeling like my old self again today. Singing, dancing, playing, laughing and so much more. I was even able to do another performance of my punk rock version of Twinkle Twinkle Little Star, I think I have a hit on my hands here, I will try and find away of getting Daddy to record it for you guys.
The word on the street is my next round of chemotherapy starts on Thursday, so I'm hoping to get home for a few days and pack loads of fun and laughter into my life. If you are reading this, why not join me in doing something that makes you smile over the next few days.
18th March 2006
Happy Birthday to Me, Happy Birthday to Me!
I'm 3 today!
Last night Daddy noticed a small amount of blood coming from my mouth, and called the nurse. My Platelets were only 20 earlier so he was concerned they had dropped further and we know what happens when they get too low. They took a blood sample from me and they had dropped to 16, so it was decided to give me a platelet transfusion in the early hours of this morning to be safe.
I awoke for my big 3rd birthday feeling quite tired and drained but soon started singing thanks to Andy, Joanne and Aaron Butler who brought me a Tweenies Sing Along DVD, and sing along I did. I think it may be driving Daddy nuts after several plays though.
I still have my fingers crossed that I will make it home just for a few hours this afternoon, I hear I have lots of post and presents to open from my regular visitors and Post Pals.
Hopefully we will update this page later tonight, so you all know how my day has been.
Against all the odds, I came home from hospital in the afternoon for a few hours and opened some fantastic presents. Louis and I have decided to create our own band, and may even start up our very own Rock School, so let me know if you are interested.
On my new keyboards I belted out a mean punk rock version of Twinkle Twinkle Little Star, which I don't believe has been done before and may just have something here.
Now let me introduce you to the band!
I had a lovely surprise visit from Louis's friend Isabel Randall and her brother Owen who brought me a card each and a my little pony which has my favourite colours pink and purple. I love it!
Meanwhile I'm driving everyone crazy with my birthday card from Sally at Georgie's Fund that plays Old McDonald, really loud over and over again.
Louis was so excited by everything that he ended up opening his presents too, it's not his birthday until Tuesday but he wanted to share his day with me at home. Either that or he just wanted to get his hands on his presents.
Spending an afternoon living the rock n roll lifestyle has left me exhausted, so I just had time to blow out the candles on my Princess cake before going to bed for a much needed rest and then I'm back for a night in the hospital and also a nasty injection into my leg which I'm not looking forward too at all.
I have not had chance to open my presents that have been posted to me from you guys yet, but Pictures, Thanks etc will appear on here over the next few days.
Huge thank-you to everyone that has cheered me on this week and hoped I made it home for my birthday, I've had a great day, and you all inspire me too. Together we can move mountains.
17th March 2006
I began to feel a little better last night and enjoyed listening to some music with Daddy until 11pm, we share an ear piece each and I love listening for each instrument and doing an impression of me playing it.
Daddy was laughing as I said "DRUMS!" and began pretending to play the drums, followed by "GUITAR" and proceeded to play the guitar. I suppose you had to be there, but it was great fun.
Although we had a fair amount of fun, and stopped up quite late, I still didn't sleep very good last night and feel quite down again today.
The Doctors also tell me my Platelets are down to only 20 again which has made everyone a little nervous, especially after Monday night which nobody wants to see a repeat of. I am not having a transfusion just yet as they are hoping my body is recovering and that they will increase on their own shortly.
It's not looking like I will make it home for my birthday tomorrow, but I haven't given up just yet. I have no time to feel sorry for myself though as my friends on my ward have kept me very busy. I've been making cakes again which you all know by now I love doing and I must be good at it, as they all get eaten very quickly.
Everyone is spoiling me too and I have received some fantastic presents from everyone on my ward, Denise and Michelle brought me a great Winnie the Pooh Back Pack and I have some beautiful princess shoes that light up when I walk. I know it's not my birthday until tomorrow but I just can't help myself and needed cheering up.
The staff here have also put a big Happy 3rd Birthday Samantha banner above my hospital bed and then some lovely flowers arrived from Hilary and Fraser so thanks so much for cheering me up guys on the eve of my birthday.
16th March 2006
I'm still quite poorly at the moment and feeling very tired as I've not been getting much sleep at night due to sickness and waking many times for the toilet due to my overnight TPN feed.
Mummy and Nana Diane carried me around the ward whilst dragging the machine with all my medicines and all those wires trying to cheer me up, but I'm just not feeling to good at the moment.
However those lovely gals in the playroom saved the day again, they helped me make 2 crowns full of fancy shiny jewels. I made a Kings crown for my brother Louis and he loves it, he won't take it off! I also made a Queens crown for me.
I love making things and also decorated a little bag with lot's of shiny things to carry around my little girly essential items.
There was just enough time to paint my nails in preparation for my Birthday Party before retiring to bed exhausted.
15th March 2006
Last night, I was much more settled, I may still be hooked up to loads of machines, have a high temperature, sickness and diarrhoea but nothing could be as bad as what I went through yesterday. I think Daddy is still getting flashbacks of that horrific Monday night.
I felt very teary and sad this morning when I woke up, but once again Catherine came to the rescue and helped me make cakes at 8am! by 08:30am I was painting and making cards with heavy usage of my favourite colours pink and purple. Catherine is an absolute star, and always manages to get me smiling no matter how I'm feeling.
Also many thanks to Anne in Greece who signed my guestbook and pointed out that although I have been having a tough time, the nasty cancer is having a much worse time than me.
I'm getting quite excited about toys being so much cooler in a few days, it has annoyed me for sometime how all the best toys say not suitable for under 3 years old. As of Saturday I can play with small parts and everything so there will be no stopping me.
Despite still being very poorly and confined to my bed, I am much better than I was, so my goal is to make it home for my birthday this weekend and blow out the candles on my princess cake.
Wish me luck.
14th March 2006
Over the last 6 months, I have experienced many highs and lows during my battle against this nasty disease but last night was by far the worst I have ever experienced.
It all started when I was suffering with diarrhoea and sickness last night and I had a few accidents and the lovely nurses made me a nice clean bed so I could try and get some much needed sleep. I started being sick and Daddy noticed that there were small amounts of blood in my vomit, so he took the bowl to the nurse and was advised a Doctor will come and see me shortly.
A lovely doctor then arrived and I became violently sick and was now bringing up only blood, it was getting worse each time, I could see Daddy was very worried even though he was trying to hide it. The Doctor was fantastic and explained that my platelets are very low, and they will be rushing some to me from Sheffield in an ambulance with sirens and big blue flashing light just for me.
I was then under very close observation by everyone as I began to vomit increasing amounts of only blood, my blood pressure had become very low and my heart rate had increased dramatically. I was quickly given some special medicine and hooked up to fluids which seemed to ease it straight away.
A blood transfusion and platelet transfusion then followed and my little body began to recover, I then had just normal sickness and diarrhoea to contend with.
A huge thank-you to all the lovely nurses and the nice Doctor for reacting so quickly last night and explaining everything to me, so I didn't' panic too much. I was very poorly but please don't worry about me because I am in very safe hands.
I awoke this morning after around 2 hours sleep and feel quite yucky, sad and very very tired. One of my favourite ladies from the playroom called Catherine came to see me, and managed to get me smiling for a few moments as I was telling her all about my exploits in the garden with Louis last week. So a huge thank-you for bringing that smile back to my face if you are reading this.
I am going to spend the rest of the day resting, because I feel completely exhausted.
13th March 2006
I really don't like sounding like a constant complainer but I'm still quite poorly at the moment and have very little to tell you all as I have been lying down feeling miserable.
My temperature spiked today, so I am on antibiotics to make me better, so hopefully I will be back walking around the ward soon.
It appears that my blood count levels are dropping so may need another blood transfusion later this week too, I just need plenty of rest at the moment but look forward to showing you a few happy pictures in the next few days.
Until then, I'm getting an early night, hope you understand.
12th March 2006
I'm still feeling very miserable I'm afraid, another very restless night with very little sleep for myself, Daddy or any of my neighbours on the ward. If I'm getting no sleep, I don't see why anyone else should!
For most of the day I just lay on my bed, feeling sorry for myself, and to add to my troubles I am experiencing some trouble with my water works which is driving me nuts! I just can't seem to dry myself and constantly have a sensation that I want to go to the toilet and this is really upsetting me. So much so, I have insisted in wearing nappies again, and as regular visitors will tell you, I hate nappies.
Although I have been very sad today, there was a brief 5min period, in which I suddenly felt the urge to entertain and cheer people up around me. Without warning I stood on the bed and took a bow and flashed my cheeky smile and explained what a bow is to people who were looking at me a little strange.
This moment of madness only lasted a few minutes and must admit that it drained me of my energy but I loved every second of it, that's what this crazy old life's all about, seizing the moment and all that.
11th March 2006
I'm not getting much sleep at the moment, so will be the first person to admit I have been a little teary and fed up for most of the day.
My mood is very up and down, and my temperature is quite high so unable to come home for a few hours, so it's another day in hospital and will be hooked up to TPN feed again overnight.
If I get a good nights sleep then hopefully my trademark grin will return but at the moment I feel miserable but I'm sure 8 hours sleep will sort that out.
Besides it's under a week until my big third birthday, so I better get myself sorted as I have some partying to prepare for.
10th March 2006
I had a pretty good night's sleep in hospital last night and still in very good spirits flashing my infamous smile around, but it looks like I have to spend a little time in hospital again.
My body seems to be all over the place at the moment so to keep me healthy I will be back on my overnight TPN feed which gives me all the goodness I need, but I have to be in hospital to receive this as the feed goes into my veins rather than my belly.
My partner in crime Freya is in hospital this week too, so I have enjoyed playing with her and she teaches me a thing or two as well.
We all know I'm a Diva and can be a little demanding at times but my smile remains despite having to remain in hospital again for a few days, so don't worry too much about me just yet.
I'm still on a high after receiving so much mail this week, you people certainly know how to make me feel special.
9th March 2006
In myself I'm looking and feeling pretty good, however on the inside it appears that I am quite poorly. Despite feeling so good they tell me that my potassium is dangerously low, I'm losing weight, dehydrated, not taking enough fluid or food, blood levels are dropping and magnesium levels are low. I understand Doc, but apart from that I'm doing fine right?
You may have noticed by now that I'm not the kind of girl to feel sorry for myself and the main reason I'm so chirpy today is because of you guys! Daddy's friend Simon came round last night and dropped off loads of presents from Post Pals and people like you out there.
I had a lovely letter and signed poster from the living legend and inspiration to us all Lance Armstrong, if you are reading this, fighting cancer and think I am brave, I urge you to read just how much this fantastic man has achieved and inspired so many people around the world. Daddy's just jealous he married Sheryl Crow but that's a another story.
Huge thanks to Charlotte Davies, Claire, Colin and Aimee-Beth Horton, Mash and Mable (Sausage Dogs from Aberdeen), Christine Scott, Elena, Daddy Marco and Mummy Ginny from Italy, Marina, Kate Dee, Viks, "The Hatheways" in Indianapolis and Ingahill Andersson in Sweden, Ruth, Mary and Sylvia from the DRI, Chris from Burton On Trent, Victoria and Rosie Butler for a beautiful fairy.
A special thank you to Martelle all the way from South Carolina in the USA, I received a huge box of goodies for both me and Louis. You put a huge smile on our faces, which is priceless.
To think people from all over the world can spare time out of the busy lives to think of little old me, is just out of this world. I want you all to know that every card, e-mail, gift is appreciated more than you can possibly know and you all help me keep smiling the way that I do.
Thanks also for thinking of my little brother Louis, it makes me so happy, when I see his face light up as he helps me open the gifts to find a little something for him too, that little guy is my rock, but don't you dare tell him I told you that.
I will get Daddy to put some pictures on here soon of us both with our cards and gifts.
8th March 2006
Block 1 of TVD chemotherapy is over, and I woke up in Mummy's big bed this morning for a day of fun, fun, fun. I feel a little poorly though and not quite my usual self, so maybe I'm beginning to feel the effects of the treatment.
As the day went on, I have become quite sick and Mummy is quite worried about me, so has taken me to the hospital to make sure I am ok.
Mummy I salute you!
It's a good job she brought be into the hospital as my Platelets had dropped to only 10, as you are reading this your platelets are probably between 200 and 400, so that should give you some idea of how serious it is.
I need to have a platelet transfusion this evening so I'm afraid I am back in hospital for a night but hope to be back home tomorrow.
7th March 2006
Last night I finally snapped, after 7 days of chemo and Daddy was the nearest person at the time to take it out on. I kicked and slapped daddy and told him to find another bed and get to sleep now, and he did as he was told which was quite wise of him. I was quite nasty for nearly 2 hours and was likened to the little girl from the Exorcist movie. However I have been on chemo and loads of medication for the last 7 days and think I've done really well to keep my cool for so long. Could you?
After I had blown off a little steam, I settled down for the best nights sleep I've had in ages and awoke feeling much better, it's amazing what a difference 8 hours sleep makes.
My Block 1 of 7 days TVD chemotherapy finally finished at around 6pm today which was a huge relief, but I still made it back home for 9pm, and made everyone smile as my first words to come out of my mouth when I opened the door were "HOORAY I'M HOME!"
I seem to be quite good at making people smile at the moment, another one of my favourite's is bursting into Smile Like You Mean It by The Killers whenever anyone takes a photo of me, it's so much better than cheese and always makes people laugh. I've also been known to make people smile by bursting into Oh My God by the Kaiser Chiefs, I'm finding a song for every situation at the moment.
Poor Louis was shattered but I kept him playing very late on a school night, 4 year old boys just don't have any stamina these days. I finally gave in and enjoyed a brilliant nights sleep in Mummy's big bed.
6th March 2006
Had a very rough night last night as my chemo and medication kicked into action, I felt very irritable, teary and threw a few tantrums too. I was quite sick through the night also, and yesterdays fun and games seem a lifetime away.
I got very little sleep and made sure nobody else on the ward got any either, the nurses feel one of my anti sickness medicines could be causing my mood change as it is steroid based and known for causing mood swings etc. No Kidding eh.
Mummy came to the rescue in the morning and we enjoyed planting a sunflower, which I have to water everyday and quite looking forward to watching it grow over the next few months.
I'm quite looking forward to my birthday too, as I hit the big 3 on the 18th March and my only demand so far is for a princess birthday cake with 3 candles, which I feel is a perfectly reasonable request.
5th March 2006
My 48 hour chemo session begins today, so it's off to hospital for a few days, and I get the feeling that I'm going to feel crappy for awhile after this treatment. I do have 5 hours to spare though, so what shall I do? What would you do?
That's right, I'm going to have some good old fashioned fun, the sun is shining, there's snow on the ground, what more could a girl ask for eh.
First off, I challenge my brother Louis to a snowball fight
You can't beat a snowball fight in the morning, it really got me in the mood for some fun, so Louis and I then hit the garden for more shenanigans.
Forget about chemo and cancer for a moment, I'm having a great time!
I hope you don't think all this fun has worn me out, there's still plenty of life in this gal yet, now it's time for a little sports and to show David Beckham the correct way of taking a penalty.
Now I've had a little fun, I feel ready for the hospital and to tackle this 48 hour chemo malarkey.
4th March 2006
I have a fun packed day ahead of me today which consists of yet more chemo, a blood transfusion and the nasty process of having my NG tube fitted again. Rather than feel sorry for myself I decided to start the day with a huge smile and some good old fashioned dressing up.
Please, please no cheap gags saying you can put your mask back on now!
I arrived at hospital around lunchtime, the chemo session wasn't too bad, and the blood transfusion gave me a huge energy boost but nothing can ever prepare me for having the NG Tube fitted again. Judging by the look on all the adults faces whilst it was done, I don't think they would be too keen either.
I had a little cry, but for my troubles I was given a bravery certificate and lots of stickers, so feeling quite pleased with my self, and quite right too I say.
Luckily I still made it home for Saturday night which is fantastic, as I will probably be back in hospital for the next few days, as I'm going to be hooked up to Chemo for 48 hours.
3rd March 2006
Went to hospital early this morning for yet more chemotherapy and was told my HGB count has dropped and that I may need a blood transfusion tomorrow to put some colour back in these cheeks of mine.
I got back home for around 4pm, and enjoyed getting into more mischief with my big brother Louis, we made some Scooby Doo biscuits and then retired for an early night.
However Louis and I, did not want to go to bed early on Friday night, so cracked open our dressing up box and played dressing up until 9pm!
Notice anything different about me in the picture above?
Yes I know I'm wearing a wig silly, but you may of noticed that my NG Tube is missing, this is because I felt quite sick tonight and the tube popped out whilst being ill, so when I go to hospital tomorrow, I will need a new tube fitted. It's not much fun being held down whilst someone puts a tube up your nose, down your throat and into your tummy but hey, it's got to be done.
2nd March 2006
A little more chemotherapy for me today, and I'm starting to feel a little tired, and my blood counts are dropping again slowly. Surprise surprise eh, but we know what to expect by now.
However it takes more than that to stop this gal smiling, and even managed to make it home for 5pm again for yet another night in mummy's big bed.
Before we talk of going to bed, I need to tell you that I made some yummy cakes today when I got home, and even licked all the mixture of the spoon when nobody was looking.
I'm really enjoying catching up with my little brother Louis too, we have been causing so much fun and mischief. He is going to school in his Scooby Doo Pyjamas tomorrow for world book day and very excited about it too, I think he's mad!
1st March 2006
It's the first day of the month along with the start of my latest round of chemotherapy today in a bid to try and rid this nasty disease from my bone marrow once and for all. I am due 2 blocks, each block consists of 7 days of chemo, after this I will be taken for the usual scans to see if it is succeeding in reducing the cancer from my Bone Marrow.
You may remember my previous treatment meant being hooked up to chemo for 24 hours at a time, so Mummy and Daddy were very worried at the thought of this stage lasting for 7 days at a time. However it's not as bad as it first sounded because today's chemo is only for 15mins, don't get me wrong, it's no walk in the park, but much better than we were expecting.
This chemotherapy is called TVD and is a new treatment so keep your fingers crossed for me this week as I fear as the week goes on we may have familiar tales of temperatures, blood transfusions etc
I was a very good girl again today and stayed still for part 2 of my MIBG scan, so in the next few days we should get the results of these scans, so we will know how I'm doing.
Let's not worry about all that just yet, because I have enjoyed another fantastic day with boundless amounts of energy and laughter. I also managed to make it home for 5pm, so have a lovely night's sleep in mummy's big bed again to look forward to.
When I was lying on the bed, my brother Louis buried me in cuddly toys, it was so funny and we both couldn't stop giggling for ages.
28th February 2006
I have been a really big girl today and stayed still for my MIBG scan, by doing this I avoided being sedated, so everyone is a winner. I even got a sticker for my efforts!
It has been quite a boring day in the hospital with lots and lots of waiting, boooooooring.
I managed to sneak home for 4pm and play with Louis when he got back from school, we are quite a double act when we get together, and could put a smile on even the saddest of faces when we get going.
It's pancake day but I wasn't to keen on the idea, Louis didn't seem to like pancakes either, but Daddy made sure none went to waste.
Word on the street has it, that my chemotherapy starts again tomorrow, so it's another early night for me in mummy's big warm cosy bed.
27th February 2006
I had a cracking weekend, and I'm still feeling fantastic!
I went to hospital this morning, and the ward was nearly empty, none of my friends were in and although I missed seeing the familiar faces, if everyone is feeling better, then a empty ward is a happy ward.
The doctors came to see me and tell me I have a MIBG scan tomorrow and my next bout of chemotherapy begins on Wednesday. It sounds like I have a busy week ahead but my batteries are fully charged and I feel ready for anything, so bring it on I say.
I had a lovely e-mail from Lesley Davis who is fighting breast cancer, and she says that my bravery has inspired her to not feel sorry for herself and fight her disease. When reading her e-mail it inspired me too, so let's beat this nasty cancer together.
After the usual tests, I came back home for the night and even enjoyed a good old fashioned cuppa tea. I enjoyed reading, singing and smiling. Another fantastic day, but I have an early start in the morning so better get some sleep.
26th February 2006
I'm really enjoying my weekend at home, and being off TPN feed, is making me feel much better, I was starting to feel a little bloated after being on it for so long.
As I have not been in hospital over night on TPN, it means my special milkshake feeds via my NG Tube have been increased, and so far so good I have had no sickness at all. I am keeping down around 400ml a day now and although we still have a long way to go, my little old tummy is slowly accepting food again.
This week I have a MIBG scan to look forward too, and of course talk of more chemotherapy, but tomorrow is another day, so I'm going for a dance on the bed and forget all about my worries, I recommend it, so next time you are feeling down, why not give it a try!
More pictures have been added to my diary last week, so scroll down to see what I was up too.
25th February 2006
I am spending to day at my Nana Pam's house with Mummy and Louis and look forward to playing with her toys there, it's always nice to play with something different.
The postman brought me a lovely surprise this morning, Cancer Research UK have sent me a Little Star Award.
You will be pleased to know that I should be able to stay home all weekend, so toys, laughter and another opportunity to sleep in Mummy's big bed.
There's some nasty chemotherapy on the horizon, so I'm making the most of every minute that I'm feeling so darn good. So why not join me today and do something special too that makes you smile.
24th February 2006
Another great night at home last night, I could get used to this life at home malarkey, I went back to hospital this morning and had to stay until 4pm whilst the Doctors and nurses checked me over and was given various medicines.
Good news though, they let me come home again for the night! I had a nice surprise too, as Andrew and Joanne Butler have returned from a break in Euro Disney Paris and brought me a cool mini mouse necklace that makes a noise when I am running around.
Paul, Claire and James Lawrie also brought me some fantastic gifts that will keep me quiet tonight too, I am so grateful to you all for thinking of little old me at this time.
I'm home and I have cool gifts to play with, it doesn't get much better than that does it.
23rd February 2006
I enjoyed a good night's sleep at home last night, without the sound of beeping machines, nurses taking blood pressure or poorly children. Still no sickness either, which is fantastic news as my special milkshake feed via my NG tube is slowly increased.
I have been quite tired today, but spent the day at Nana Diane's house and enjoyed playing with a different set of toys and of course being with my cheeky brother Louis
Good news, it has been decided by my nice friends at the hospital I can have another night at home! how cool is that?
Mummy has a special machine to give me some feed overnight though my NG tube, so I'm making the most of this time at home before the nasty chemotherapy starts again in a few weeks.
22nd February 2006
Great News Gang! After many months of sleeping in the hospital they have let me spend a night at home, yes that's right a night in my own bed at last, or should I say Mummy's bed.
I've not been sick today, and tolerated a little more food via my NG Tube, so I have been given a break from my overnight TPN feed at the hospital.
Lot's of smiles, lot's of playing, lot's of dancing and lot's of singing. throughout the day.
I just can't stop smiling!
21st February 2006
Cardiac scan yesterday was fine, and I had a good nights sleep again with no sickness.
I started the day with a smile today, and noticed the nurses were struggling with some admin work, so decided to give them a hand.
The doctors wanted to check my tummy out to see if anything could be causing my sickness that has plagued me for the last 4 weeks. I had to take 50ml of some magic potion and they then watched via X-Ray to see what happened. Everything went to plan and the liquid took the correct path into my tummy with no sickness, so we may have seen the last of this nasty sickness.
Got home around 3pm for just a few hours but had a great time again, and even said the words "I'm Hungry" which seemed to go down quite well with everyone.
I even found time to jump up and down on the bed, with a little dancing thrown in for good measure.
If you were expecting bad news you came to the wrong place, only smiles around here today. Time to head back to the hospital now, see you tomorrow.
20th February 2006
Yet another great day, this girl is on a roll!
A night without sickness again, and I woke up this morning feeling fantastic, I started the day singing all my favourite songs. It was then time for a Cardiac Scan, this is just to make sure I don't have a weakness in my heart because the next chemotherapy could affect me if I have a weakness there.
I managed to escape back home for 2pm and enjoyed a cracking afternoon with Louis, Mummy and Nana Pam and impressed everyone with my computer skills as I hit the CBeebies site which I now know like the back of my hand.
Across the whole of my belly is the wound from my operation and it had some clear sticky plaster covering the area, this should have been removed a few days ago, but I wasn't having it. After it was explained to me that it will cause get infection if it is not removed, I had to bite the bullet and let Mummy slowly peel it off. O U C H ! I would have shouted some swear words if I knew any, but it's off now and you will be glad to hear that it is healing quite nicely.
After I calmed down it was time to return back to the hospital and I fell asleep in the car, and when I opened my eyes I was in my hospital bed. Better get some sleep now.
19th February 2006
Enough of the Doom and Gloom!
Today has been a great day, no sickness last night and I had three 30ml feeds today, all of which did not make an unwelcome return. If you thought no sickness and small amounts of feeds were good, you will be very pleased to hear I have been on top form all day and have been busy making everyone smile.
It all started at around 9am this morning, when a poorly girl in the bed opposite said I had cheered her up, when she heard me singing all the songs on my Fun Song Factory Video with Big Dave, Ian and Michelle.
I was then allowed home this afternoon for a few hours, and had a great time with Nana Diane and Grandad Dave. I felt like entertaining and enjoyed making everyone smile with a variety of silly faces, walks and dances.
I went to the shop with Grandad Dave and Louis, and selected some yummy Milky Way Chocolate Stars, but by the time I got home I didn't feel like eating them, I later heard Louis say "I think Samantha is to poorly for chocolate, maybe I could eat them". You just got to love him!
Simon then came to see me with loads of gifts for me that people have sent via Post Pals. I had gifts from all over the world including Japan and Italy! Louis was a happy lad too as he got a new Scooby Doo Leap Pad Book.
Daddy will post a huge thank-you on here tomorrow when he can find all the names and letters as Louis and I get a little over excited when opening all the gifts.
HUGE THANKS to Ali Ford, Elisa Cortese and all the staff at the Italian Neuroblastoma Association, Nicky Walker, Toby Barret, Martelle Gormley, Sue, Catherine, Amanda and Ian in Japan, I never dreamed I would be big in Japan. I feel a song coming on!
A fantastic day full of smiles, and hope tomorrow will be the same.
More Pictures have been added to the photo's section of my site.
18th February 2006
As my sickness had disappeared for the last two days, my anti sickness medicine was stopped to see how I got on without it. I am afraid to say that I was sick after all of my small 30ml feeds today, so guess I will be back on my medicine again.
I was allowed home for the afternoon today and had a great day as Aunty Kerron and Uncle Gordon came round to see me, so we had a few laughs during the day too.
It was thought that my lack of eating was more psychological but tonight I sat down at the dinner table and I was up for eating some dinner as it smelt so good, however when I tried to swallow anything at all, my little belly wasn't having it. I WANT TO EAT! it's just this belly of mine. Rant Over!
I returned to the hospital for 8pm this evening and my blood pressure is a little on the up side again so will have to have some medicine for that too, it's been a tiring few days so heading for bed now.
17th February 2006
Another night without sickness, so maybe just maybe we have seen the last of it!
I have been in top form today, I have been walking all around the ward flashing my cheeky smile and have boundless amounts of energy.
The dietician came to see me and wants to try and build up my food tolerance again, as I have a little spare room in there since my operation, I decided to give it a go. You will be glad to hear I had 3 separate 30ml feeds today and all have stayed down. It may not sound like much to some of you out there but believe me when I say this is a huge step forward for me.
Mummy and Daddy went to see my consultant to discuss future treatment as my Bone Marrow still contains traces of Neuroblastoma, even after all that Chemo!
It appears that I will have to endure more chemotherapy I'm afraid, and it sounds quite a rough ride too, you may remember that each block of my previous chemo consisted of being hooked up continuous for 24 hours. The future chemotherapy treatment is called TVD (Topotecan, Vincristine, Doxorobicin) and each block will last for a 7 days at a time. I thought 24 hours was bad enough, but if it kills this cancer once and for all, then bring it on I say.
After 2 blocks of this chemo, I will undergo the usual tests and scans to determine my progress and if any further blocks are required.
So despite going through so much already, there is still a very long way to go and will need your thoughts and well wishes more than ever, so please keep thinking of me and continue to follow my progress.
As we have a rough ride ahead, the nice people here are trying to get me eating again and back to my old self so I can enjoy a well earned break at home for a week before we start all over again.
16th February 2006
Guess what? I wasn't sick last night! This has got me in the mood to celebrate, so I invited myself along to a party on another ward, which was thrown by the lovely people at Sou Westers. Lots of games, sweets, singing and dancing. Head, Shoulders Knees and Toes is still a firm favourite of mine you will be glad to hear.
I also enjoyed making some cakes with the lovely Tanya from the playroom. They passed the taste test as Daddy and Louis scoffed most of them down when they arrived at night.
A good day was had by all with no sickness at all.
15th February 2006
I was quite sick all night again last night but rather than feel sorry for myself, I got up this morning put on my tigger slippers and went for a walk on my favourite ward E38! that's right kids I'm back on my old ward and returned to a heroes welcome. Everyone is telling me how great I look and amazed to see me going for a walk so soon after my operation.
I think Daddy is missing his friends on the other ward because of his midnight custard cream parties, he said it was his wildest weekend in four months. Eating custard creams was not my idea of living the rock n roll lifestyle but he's getting on a bit now isn't he.
I have enjoyed catching up with my friends Freya and Matilda who are both on the ward at the moment, we always enjoy a good giggle and showing off our dolls etc. I'm really happy to have spent a little time with them both today.
Just waiting around now for tests to see what is causing my sickness still, Mummy and Daddy are seeing my consultant on Friday to see what my future treatment will be to clear my Bone Marrow of this cancer and in 2 weeks I have another MIBG scan to see if the cancer is clear from the rest of my body since my operation.
14th February 2006
Another very restless night for me again last night, as I'm struggling with sickness, diarrhoea and a few stomach pains yet again. I'm told my body is just getting back to normal after my operation but what is starting to get me down is this sickness.
The sickness that I am having is exactly the same as before my operation and I'm now struggling to drink 100ml of water in a whole day. I am now on another anti sickness medicine but I have a feeling we have not heard the last of this one.
Apart from that, there have been glimpses of my trademark smile today and managed a few small walks, but prefer to be carried around.
Last week I received lots of gifts via post pals from people out there in internet land like you who wanted to put a smile on my face after my operation. Take a look at the picture below to see the lovely toys I got, I'm afraid I'm not in the photo this time because I'm not feeling very good at the moment, and as I'm becoming quite famous, I don't want to see any dodgy pictures of me appearing in Heat magazine, do I?
My favourite gift is my signed photo's of Mr Tumble A.K.A. Justin from CBeebies who wishes me the best, hopefully I will get to meet him one day.
So a huge thank-you to Nicky W and Class 6, Christine Scott, The Hatheway family in Indianapolis, Julie Barrett, Christine the "honeykeks" lady, The Yeo Family, Gary,Faby, and Sergi. Very sorry if I have forgot to thank-you, I love all my gifts!
13th February 2006
I had quite a rough night again last night as I am still being sick, but hey it's no longer green, so I must be getting better.
It wasn't until around 5am that Daddy and me, finally enjoyed a good sleep but when I awoke at 8am shouting "Daddy...Daddy...Daddy...I want The Toilet" he was fast asleep and snoring so a nurse had to take me, a bemused daddy later woke up to see Doctors and nurses laughing at him for sleeping through everything.
I was supposed to be having another MIBG scan tomorrow, which will reveal my progress after the operation but I need to drink 600ml of medicine mixed with water throughout the day before they can do this and at the moment I am only drinking around 100ml of liquid a day and that is making me quite sick, so this will be postponed for 2 weeks.
We are also expecting a meeting with the consultant later this week to discuss future treatment as this nasty cancer is still showing in my bone marrow, I suspect more chemotherapy is on the cards but will have to wait to see what he says.
I've not been able to get out of bed today, as I have been hooked up to my TPN feed for 18 hours, but in quite good spirits with Mummy and telling her all about Daddy's exploits last night.
12th February 2006
Last night was rather yucky and messy and I'm wearing a non too flattering gown from the operation so decided it was time for a good old clean up.
I had a good clean, and slipped into some rather cool Winnie the Pooh Pyjamas that I received from one of my friends out there in internet land. The nice nurses changed my bed so I'm now clean, refreshed and have a nice cosy bed too.
The nice man who operated on me came to see me today and was delighted how my tummy was healing after the operation. I'm still having problems being sick green stuff, but it's just because my bowel is slowly getting back to normal again.
I wont embarrass him too much by naming him but the lovely man who operated on me is the same man that removed a tumour from my brother Louis a few years ago, we are both so grateful to him along with all our family, he is a true hero and always will be.
As for me, I was able to leave my bed for the first time today and had a short walk to play room, Mummy kept trying to help me and I said "I Want to do it myself" I'm a gutsy old gal me, you know. I needed carrying back though, but hey one step at a time.
I also enjoyed sitting back and watching a few videos, I'm feeling much better and even managed to put my foot in my mouth! A girl's got to have the odd trick up her sleeve to break the ice at parties in the future, wouldn't you agree.
Another wire has gone! Yippee! The Morphine has now been taken away and I seem to be doing fine on just Paracetamol for pain relief.
I am still being quite sick and it's a horrible green colour! The doctors advised, it's because my stomach and bowel were moved to one side for several hours and my body needs to adjust back to normal.
11th February 2006
I spent most of the day asleep and feeling groggy due to the morphine and epidural so not a great deal to tell you all about. The doctors plan to remove the epidural from me tomorrow morning so I should begin feel a little better soon.
Last night at around 3am, the nurse turned me over to check on my epidural and it has started to leak which was quite messy and a nice man came to see me and it was decided to remove it straight away. The best way of describing what I saw was fishing line covered in yucky blood being removed from my spine. YUK!
I'm sure there are a few mummy's out there that know what I am talking about.
10th February 2006
Despite being dosed up on Morphine and Epidural I awoke properly at around 6pm last night and my first words were I Want Toys.....I want Toys....I want Toys...I Want Toys! It was quickly explained to me that I cannot sit up or move a great deal, so I settled down to a few books as a compromise and allowed Mummy, Nana Pam and Nana Diane to read a few lines each when I called their name.
So I can be monitored closely I am on a open ward which is very close to the nurses and have quite a few babies close by which I love as I love little babies, I'm not sure if Daddy is so keen on the crying through at night. Not that we got any sleep because every hour throughout the night I was woken up and asked to wiggle my toes, bend my legs and ice was rubbed on belly to see if I could feel it. This was fine upon until around 2am when even a patient girl like me got fed up with the routine. Imagine being woken up at 3am and told to wiggle your toes whilst you felt awful. I must admit to being a bit of a rebel and said no to all questions and simply requested that I wanted to go to sleep.
As for today I still feel a little groggy but guess that's down to the morphine and epidural but at least I don't feel any pain. Mummy was a little worried about me because I kept getting a little twitch in my arm today but I'm sure it's nothing to worry about.
I'm quite excited about tonight though as word on the street is that Daddy's friend Simon has dropped off loads of presents from people like you out there through post pals. I will thank you all properly tomorrow and let you know what I got and maybe even a picture of me.
9th February 2006
Something tells me you haven't stopped by to see if I was sick again last night have you? Just for the record I was quite sick but woke up feeling quite good and full of smiles.
At around 08:30am I was taken down to another floor of this massive hospital and enjoyed playing in a big playhouse and making Mummy pretend cups of tea, but was then asked to take off my pretty pink pyjamas and put on a little gown.
Mummy then took me into this little room full of doctors in white clogs, what's all that about? is this mini Holland down here? suddenly I feel very tired.
Daddy here, Samantha returned after around 5 hours and is very sleepy, our little girl has wires coming from everywhere now. As you are all aware by now she has her NG Tube in her nose and 2 little wiggleys coming out of her chest but now she also has wires coming from her hand, foot and back too. Athlete's song Wires seems so appropriate at this moment in time.
She is also on morphine and epidural to stop any pain caused from the operation, however enough of the bad stuff, you will be glad to hear that the operation went well and was a success. The team that was operating on her did not need to remove a kidney and they believe they removed all of the tumour which is fantastic.
Samantha is very tired and will be for a few days, but sure she will be back with a few stories of her own very soon.
8th February 2006
The bag that was fitted to my NG tube is controlling my sickness a little at night and it has enabled me to catch-up on some much needed sleep. I still awake a few times feeling very sick in the night but not every hour, like last week. It's amazing the difference a few hours sleep can make, so feeling much better in myself.
My tummy was hurting when I woke this morning, so believe it or not, I'm actually looking forward to the operation tomorrow to finally remove this nasty lump from my belly. Maybe then I can get some KP Skips and chocolate buttons in my tummy.
I have had to stay in hospital all day today but I have had a fantastic time and been in a great mood for much of the day, flashing my biggest smile to anyone who looks my way, it's all good practice for when I'm attending film premiers walking down the red carpet in Leicester Square, in the not too distant future.
I'm off for an early night now, I have quite a big day ahead of me tomorrow, I will try and update this page around 7pm UK time, so you know how I got on.
7th February 2006
Thanks to the many people around the world who have sent me e-mails wishing me luck for my operation on Thursday and also from the parents who have contacted us to say they too had a child whose bone marrow was not clear after chemotherapy, but further treatment cleared it up.
Although we were all quite deflated yesterday at the bad news, don't think for one moment that I gave up hope, this girl is made of stronger stuff than that. Before we can think of any of the other stuff, I have a big operation on Thursday and this is my main focus at the moment. I'm sure I will begin to feel much better in myself when this nasty tumour is removed from my tiny tummy.
Once again I was allowed home for a few hours in the daytime and was feeling quite active and kept everyone busy running around after me, had loads of fun with my brother Louis when he got home from school.
Last night nurses fitted a tiny bag to my NG tube which should drain the yucky stuff from my tummy that is making me so sick at night. Hopefully I will get some sleep tonight.
6th February 2006
Arrrrgh! this sickness is driving me nuts now, last night was my worst night and sick every single hour during the night. I can handle the sickness but getting no sleep is starting to get me down a little as I just feel tired all the time.
Doctors think it may be the tumour lying funny in my stomach, so hopefully things will be much better after Thursday when I get this nasty tumour out of my little body.
We had some bad news today, as I have suffered a slight setback in my treatment. The Doctors have advised that the results of my Bone Marrow scan have come back and they are still showing traces of the cancer. This means that they will not be able to perform Stem Cell Rescue after the operation and I may have to endure more chemotherapy.
Over the next few weeks we will be advised on what treatment and options I have ahead of me, but feeling a little down, knowing even after my big operation, my uphill hill battle against Neuroblastoma still has a very long way to go.
Not the best of days I'm afraid but not being the kind of girl to feel sorry for myself, I will just carry on with a song and a smile and feel more determined than ever before to beat this nasty disease.
5th February 2006
My sickness continued last night and Daddy was quite worried because there was traces of blood in my vomit but the doctors checked me over and think because I am being sick so much and constantly retching I may have burst a blood vessel but it's nothing to worry about.
I was allowed home at 2pm for a few hours and enjoyed playing with Louis and my Nana Diane and Grandad Dave. I had a great time at home as always but feeling quite tired as these sleepless nights are starting to catch-up on me.
Arrived back at the hospital at 8pm and hoping for a good nights sleep.
4th February 2006
Do you really want to know how I got on last night? As much I would love to surprise you all, I'm afraid I will have to be predictable and say that I was sick 5 times last night so didn't get too much sleep again.
I'm not the kind of girl to let a little sickness get me down though, so whilst Daddy was snoring on this cold wintry Saturday morning, I sneaked out his Ipod and started the weekend with a happy and cheery play list.
After a little sing song, I was allowed home again and went straight to see my cheeky brother Louis and we had a walk around the house hand in hand, he is a real sweetheart and enjoys looking after me.
I also dusted down my little bike and Louis got his Bob the Builder scooter out and we went to the park where I enjoyed playing on the slide, see saw, and swings whilst Louis was a little more adventurous on the climbing frame and sliding down a pole like a fireman.
When we got home Mummy made some play dough with flour, oil and paint but Daddy thought we were making cakes and when no one was looking, he attempted to eat some of the mixture and several seconds later heard him saying YUK! and struggling to rid his mouth of the mixture.
All this excitement took it's toll on me, so I retired for an afternoon nap but once again found myself being sick again. For some reason this dreaded sickness only occurs when I have some sleep.
Still feeling quite tired I am now heading back to the hospital for another night of fun and games.
3rd February 2006
Although I have been on top form in the daytime, I'm still struggling at night and last night was no exception as I awoke to be sick a record 5 times last night. As my chemotherapy is now finished and my medication reduced it's a little mystery why I keep being so sick. It could just be this nasty tumour inside me, so hopefully I will begin to feel better after my operation on Thursday.
On a more positive note I made Daddy laugh for ages last night as we were lying down listening to music on his Ipod, we shared the headphones and upon hearing the Artic Monkeys, I shouted "Rock N Roll Man!"
I had to stay in hospital today as the Doctors wanted to check me over but managed to get home for 4pm just for a few hours. Had a great time chasing Louis around the house and enjoyed some brother and sister bonding before heading back to the hospital again for 8pm
2nd February 2006
Poor Daddy and me had a very rough night last night with very little sleep because I was sick 4 times along with many toilet requests. I also felt quite restless and teary too.
However when I awoke I had a lovely surprise as a little girl called Shannon came to see me with her Dad, she was in hospital because she has dancing eye syndrome with Neuroblastoma. They also brought me a great present which I have been playing with today.
This put a smile back on my face and felt like entertaining, so I slipped into my nurses uniform and had a stroll around the ward, the lovely doctors and nurses seemed impressed, they even gave me a stethoscope to look the part. I get the feeling that when I beat this disease I may have my first job lined up.
From now on you can call me Nurse Sammy!
I was allowed home for a few hours and loved singing heads, shoulders, knees and toes along to my Fun Song Factory DVD. Lots of playing and dressing up again but feeling quite tired now, maybe because we didn't get any sleep last night, so heading back to the hospital to get some rest.
1st February 2006 White Rabbits
Last night I lay in bed with Daddy drinking milk out of a mug, so feeling much better which is fantastic news.
Despite having another restless night, you will be glad to hear that I was not sick at all last night, but I was sick at 8am this morning but nothing to get concerned about.
I was then allowed out of the hospital for a few hours and watched my brother Louis's school nativity play several times, I love all the children singing and dancing.
It was then time to play dressing up! I dressed up as a nurse, a princess, a ballerina and a fairy to name but a few. I kept Mummy busy all day playing with so many of my toys and feel I could quite get used to this being at home malarkey.
Loads of toys, loads of playing, loads of singing and of course loads of laughter.
We still waiting for the Bone Marrow test results and building up to my big operation next week, but once again I'm afraid I must leave you, as it's time to head back to the hospital
31st January 2006
I was a little restless last night and a little teary but thankfully not too sick, when I awoke this morning I felt fantastic and was seen strolling up and down the ward.
After half hour of doing this, I felt Daddy was cramping my style a little so left him and went for a girlie chat with the nurses, I felt quite at home sat with them and we all had a little giggle. When Mummy arrived she didn't know where I was so I hid behind the door much to everyone's amusement.
After my chat I was allowed home for a few hours again, which always makes a huge difference to me. Aunty Irene came round to see me too and we watched Louis School play on DVD before I retired for a afternoon sleep.
Had a great day again today but now it's time to head back to the hospital.
Daddy's best friend Brendan Devlin is to run the London Marathon for little old me and he is going to raise money for our friends at Georgie's Fund, after being inspired by my bravery.
If you would like to sponsor him or send him words of encouragement for this fantastic challenge please click on his picture below.
30th January 2006
Once again I was only sick twice last night and for a brave gal like myself that's nothing to worry about and can see the funny side of it when I woke up this morning. I grabbed a sick bowl and pretended to be poorly making strange noises which seemed to make Daddy laugh for ages.
One of my favourite nurses Margaret took me for a walk around the ward today, we had a lot's of fun along the way and everyone was quite impressed with my painted toe nails. On a downside though, some ladies started taking shoes off and showing me their toes and I have now seen enough corns and bunions to last me a lifetime. No, no I'm only teasing you all, they were all lovely feet.....honest.
I was then allowed home for a few hours before heading back to the hospital this afternoon but once again I have rediscovered my form and feel like I have bounced back to my old self again. Sure I have had a few tired spells but there have been plenty of songs, smiles and laughter too.
29th January 2006
I was only sick twice last night and even starting to see the funny side of it all now, as I was pretending to be sick this morning just for comedy value.
I awoke this morning to a fantastic sight, Kate Dee from Post Pals had sent me a huge box which contained 3 balloons. What a way to start the day! Kate you started my day with the biggest smile which is priceless, thank-you so much.
I also had lovely postcards from Cathy and Bobby in Texas, Helen Davies in Melbourne Australia, A happy Mail Pal in Florida, The Wood Family in Lancashire, Karen in the Isle of Wight and a lovely card and Barbie Pegasus stickers from The Hatheway family in Indianapolis. You all put a smile on my face and made a difference to this little girl in Derbyshire with your kindness and thoughtfulness. You have all given me a much needed boost.
It seems all over the world people know about little old me. Hope when I get out of here I don't have trouble with Paparazzi or get mobbed when trying to buy a happy meal but even if I do, I won't mind one tiny bit, if this site encourages 1 person to become a blood donor, 1 parent notices symptoms of Neuroblastoma early or someone finds that extra strength to fight cancer after seeing me fight it with a smile then it's all worthwhile.
That's what this crazy life is all about, helping each other along, as we find our way. Or as Daddy says when Devon tells Michael Knight in Knight Rider "Michael, One Man Can Make A Difference" That's all a little before my time though.
Once again I escaped the hospital at 11am this morning so heading home to get all my toys out and play, I also hear Nana Diane and Grandad Dave will be coming to see me too. I'm due back at 5pm, so not going to be sat in front of my computer for too long, I'm off to play.
*Update* I had a fantastic time at home today and have been feeling like my old self again, yippee! I spent the day playing with my dressing up box and was seen dressing up as a witch, Casper and so many other different disguises.
28th January 2006
I really don't want to bore you guys but before you ask, yes I was sick several times again last night, which isn't as bad as it sounds, but not much fun either if you know what I mean.
On a much more positive note, I dug a tunnel out of the hospital using a Teletubbies dessert spoon (hey! I'm a kid let me use my imagination will you!) and arrived home at lunchtime today.
The kind nurses really did allow me home for the daytime and I had a great time with Louis at home and even managed a trip to the park where I went on the slide and the swings. Daddy has put some new pictures on the photo's section of my site, so why not take a look and see me smiling outside of these four walls.
At 16:30 it was time to head back to the hospital for antibiotics, although I was only home for just over 4 hours it felt like a lifetime and enjoyed every second.
The biggest concern is that I am still not drinking any juice at all and seem to have lost my thirst as well as my appetite, so there is a little concern I am dehydrating and my wee looked a little milky tonight which may confirm this, so will be given some water via a drip tonight.
Many have asked why I seem to be struggling now, after I have had all 8 courses of chemotherapy but the reason seems to be because the chemotherapy for Neuroblastoma is VERY intensive and make no mistake it really takes it's toll on my little body. However onwards and upwards we must go, we are heading down a road of recovery so you won't see any sadness here just a big smile for you all.
27th January 2006
Guess what? that's right folks at the risk of sounding predictable I was sick several times last night but getting used to it now, and go straight back to sleep when the deed was done.
As you know I have not eaten anything orally for many months now and suffered sickness for sometime but people around me are a little concerned that I have stopped drinking juice which has always been a love of mine even when on chemotherapy. I get the feeling this will be monitored from now on.
On a happier note, I'm feeling a little better this morning and have been busy smiling, singing and playing in hospital today, of course I have had a few mood swings, the occasional tantrum but after all, I am going through the so called "Terrible Two's" as well as fighting a rare childhood cancer so I'm sure you will make some allowances for me.
You will also be pleased to hear that Louis is feeling better and hopes to be back at school on Monday, I also hear that he completed his Good Boy Sticker Chart and the postman has brought him lots of Scooby Doo goodies and membership to the fan club. He loves Scooby Doo so is really happy, as for me I still don't get the whole Scrappy Doo thing!
26th January 2006
Sorry for the delay in keeping things updated but it's been a little mad with Mummy, Daddy and my Grand Parents juggling everything because my brother Louis is still off school feeling quite sick.
With both him and me feeling under the weather combined with trips back and forth from the hospital for everyone, it's been a little crazy.
As for me, you will be glad to hear that I have been feeling pretty good today and starting to feel like my old self again which is fantastic, hopefully tomorrow I will be well enough to dance the funky chicken.
So don't go worrying about little old me as I am feeling fine, and Louis seems to be feeling better to, so onwards and upwards as them grown ups around me keep saying.
25th January 2006
I had a rough night last night again, I was only sick twice but I was very teary throughout the night and had trouble settling down. Poor Daddy had to take me to the little girls room every 90mins so we are both very tired today.
My cheeky brother Louis was very poorly at home and was sick all night so he's off school today, as for me I'm quite tired but still smiling and singing.
For most of the day I have been quite teary again and quite miserable, but when Daddy arrived at night, I picked up and gave everyone a glimpse of my cheeky grin.
24th January 2006
I was only sick a few times last night but was quite teary and quite sad early this morning. However the lovely ladies from the playroom Tania and Catherine spent loads of time with me and got me smiling in super quick time.
Tania helped get me all creative with feathers, glue, beads etc and maybe you will see my latest creation on the Take Hart Gallery one day. Catherine showed me a great way of painting using syringes which was a so much fun too. A huge thank-you to them both for spending time with me and getting me smiling again. Your the best!
I was then on top form and enjoyed playing hide and seek in my room, hiding from Mummy, Nana Diane and the nurses. I made everyone smile with my unconventional hiding techniques as I feel if I hide my eyes they can't see me.
It's been a rollercoaster of a day, but thanks to being surrounded by great people here at the hospital I have found my smile again.
23rd January 2006
Although my mood picked up yesterday, I am afraid that once again every 2 hours throughout the night I became quite sick, which is starting to get me down a little, I have been more sick in the last 3 days than when on my chemotherapy.
The nurses said when on chemotherapy they give me special medicine to prevent sickness but this does not always work when suffering from other types of sickness such as stomach bugs etc but they are investigating what is making me so poorly at the moment.
As I have been so sick at night I have been very tired today and looking forward to catching up on some much needed sleep.
The Doctors said my big operation to remove the tumour will be on February 9th, so I'm starting to feel like my battle against this nasty disease is moving forward.
22nd January 2006
Another rough night last night which saw my temperature hit 39, and again I was very sick throughout the night, the Doctors examined me this morning and think it could be my body recovering from the intense chemotherapy and hopefully my bloods should start to pick up over the next week and give me some strength back.
On top of this, I'm still struggling with these nasty shingles which are not much fun I can assure you.
Nana Diane is looking after me today with Mummy, and my mood did pick up for awhile and found myself smiling for a short period but still feel very tired and poorly.
21st January 2006
Last night I was very poorly again and whilst Daddy helped me onto my bedpan, I was being sick at the same time, so he had to frantically grab a sick bowl, who said men can't multi task eh? I was like this about every 2 hours so it was quite a rough night for us both.
Mummy and Nana Pam arrived in the morning to look after me and although I wasn't sick, I was still very poorly and teary for much of the day, and just lay on my bed feeling quite sad. I had a blood and a Magnesium transfusion so will hopefully pick up a little tomorrow.
My moods have been up and down, but just feel quite poorly and on medication to keep my temperature down which keeps going over 38.
20th January 2006
I was allowed back on to my beloved E38 ward today. Although Chicken Pox is spread by coughing, Shingles can only be spread by touching the sores, these are covered up so it is safe for me to return. I can assure you that nobody will get to touch them as I am quite protective of them.
Last night I couldn't tolerate any of my overnight feed via my NG tube and was sick several times, I woke up this morning very tired and pale. My blood count is also very low so will have yet another blood transfusion later to put some colour back in my cheeks.
The MRI Scan results have come through and the Tumour has continued to shrink, which is fantastic news but we are awaiting the surgeon to look at them, for his opinion and when they will operate on me.
Looking at the Bone Marrow test results, they appear to be clear, however for full results of this test it could take a further 7-10 days as they are sent away for more in-depth investigation. So we cannot take anything for granted at this stage, and have an anxious wait to see if my Bone Marrow is clear from the disease.
19th January 2006
You should all know by now, I fight everything life has thrown at me with a smile and a song, even when on intensive chemotherapy and suffering with Chicken Pox, I kept on smiling. Everyone has been so worried about me over the last few days as I have appeared very depressed and constantly crying which is so not me, as I'm sure you will agree.
A few days ago I developed a small rash on my arm, this morning the rash is very painful and looks quite nasty, under closer inspection there are lot's of tiny blisters. The doctors confirmed my fears, I have Shingles! If it wasn't for bad luck, I'd have no luck at all.
Now the chemotherapy has finished, I was looking forward to a couple of easier weeks before my operation, but it's not to be I'm afraid. As my Shingles can cause Chicken Pox in other people if they have not had it, I have been moved from my favourite ward and onto a new ward and new room. The really bad news is, I'm isolated to this room to prevent infecting any other patients.
Although I love to be the shining beacon of positive thought, I'm in a little pain, feel miserable, teary and unable to move from my room. Being an active and maybe a little nosey girl I want to take a walk around and stretch my legs and get quite upset when constantly told I have to remain in my bed. Arrrghhhhhh Feel like I'm going mad trapped in here.
If you find yourself wandering around the QMC hospital, you may just hear me shouting "I Want to go for a Walk!" repeatedly.
Enough of feeling sorry for myself, I will stop my ranting, get off my soap box and maybe I will awake feeling a little better tomorrow.
18th January 2006
I didn't get much sleep last night and was quite teary again this morning, at around 09:30 they put me back to sleep again! Something I said???
The reason for this was to have my Bone Marrow checked, we may have to wait up to 10 days for the results of this, so have a very anxious wait to see if there are still traces of the cancer in my Bone Marrow.
We may have results of the MRI Scan tomorrow, so I may have some news for you then.
As for today, when I woke up again, the nice doctors and nurses said I could come home for a few hours, which is fantastic. I feel so lethargic today though and still feeling very teary and miserable.
I have spent most of the day either lying on the sofa or in my own bed catching up on some sleep but not too much else to tell you today. Hopefully I will recharge my batteries and wake up with a song and a smile tomorrow.
Time to get ready though now and head back to the hospital, so will say goodnight to you all for now.
17th January 2006
As my smile zooms around the world, I'm afraid I will have to disappoint you all today as I have been feeling very rough, tired, upset and quite short tempered. Maybe it's the anaesthetic still in my system or after effects of last week's chemotherapy but all I know is I feel really fed up today and nobody is going to put a smile on my face.
That was of course until the lovely Tanya came along and showed me how to make some biscuits which was quite messy and fun, it took my mind of things for awhile. Tanya is the lady that works in the playroom and always makes me smile and finds fun things for me to do.
The nice ladies that clean my room in hospital Denise and Michelle also love to spoil me and got me some DVD's to cheer me up, they are so nice to me too.
In fact everyone has been so nice to me today, but I'm sure you know what it's like when you feel quite poorly, you just feel quite sad, teary and nothing seems to go your way or make you smile.
16th January 2006
A course of antibiotics seemed to do the trick yesterday as I am feeling much better when I woke up this morning, but the nurse took me by surprise and said we have a MRI scan today.
With me being an active 2 year old, they have to sedate me for this to stop me moving around, which means they will be giving me some very yucky medicine to put me to sleep, and believe me when I say it's the worst tasting stuff you can ever imagine.
I'm a good girl so forced the medicine down but made me a little sick and very upset and as I slept I was taken to another floor in the hospital for this scan, but I woke up and didn't know where I was and again became very upset. It was feared that I would have to wait until tomorrow for the scan but in the end was given another method of sedation which was given up my bottom! and you guys thought you had a bad day!
So we now have an anxious wait for the results of this test, and also have the Bone Marrow Scan on Wednesday, remember after 4 courses of chemotherapy there were still traces of the cancer so we are all praying that now I have finished all 8 courses, this Bone Marrow Scan will come back clear.
There is a hard week ahead of tests and anxious waiting for results, so please keep your fingers crossed for me.
15th January 2006
Had quite a good night last night, and my nurse said today that I'm no longer neutropaenic which is fantastic news. Once again I am allowed home for the day and looking forward to seeing Nana Diane and Grandad Dave.
I have had a wonderful e-mail today from a girl from the other side of the world in Australia, she looks a little like me, was born on the same day and year as me and was diagnosed with Neuroblastoma Stage IV around the same time as me. What are the chances of that happening? It is certainly a strange coincidence that we have so much in common and both got such a rare childhood cancer.
Please drop by to her site and send your love and support too, you can find her at http://www.kahlilla.com/
**UPDATE** I am afraid my afternoon out of hospital was cut short when my temperature hit 38.5 and a call to the hospital confirmed I had to rush back ASAP. So at 4pm it was back to the machines and antibiotics.
14th January 2006
Feeling quite good today but feeling even better because at 11am the Doctors said I could come home for the day. Now my chemotherapy is finished, the plan is to try and stop my nightly TPN feed via my tube as this is the only thing keeping me in hospital.
However when this has been done in the past my blood levels are affected and I am still not tolerating enough food so if I begin to lose weight I will be back in again. So it will be a interesting couple of days but if all goes well, I COULD have a few nights at home. Keep your fingers crossed for me, so I can escape the hospital for a few days, for the first time in over 3 months.
I have many tests on Wednesday which will reveal how successful my treatment has been and when to expect surgery. In the next few weeks we should have a much clearer picture of what to expect.
Once home Aunty Kerron and Uncle Gordon came to see me, we had so much fun playing hide and seek, I loved hiding in Mummy's wash basket with a towel over the top. Lot's of singing and dancing before heading back to the hospital for 8pm.
13th January 2006
I awoke this morning feeling fantastic, with a song and a smile for anyone that popped into see me, I made Daddy laugh for ages when I said "Oi! I'm the funny one around here".
It was then time for my many medicines to be put down my NG tube which you see in my nose on the pictures, the medicines went down fine but shortly afterwards we tempted fate by putting some special milkshake down the tube also. I am fed down this tube because for sometime now I have been unable to tolerate food orally as I get quite sick.
Before the feed was completed, all the medicines and milkshake made an unwelcome return and I got quite upset.
I then received some excellent pictures to colour in from Sherri Barrett, which soon changed my mood, so huge thank-you to Sherri for keeping a gal smiling. I also received a lovely letter from another Samantha out there who is currently fighting Breast Cancer. She said that her illness and treatment has left her so depressed and sometimes full of self pity but has been inspired by little old me.
I can assure you that hearing this story inspired me too, so lets get through this and beat cancer together with a smile along the way.
Around 13:30 the nice nurses let me come home for a few hours which always puts a big smile on my face, and it was nice to get back onto my computer again, I may be only 2 but quite useful with a mouse you know. My favourite website is CBeebies and love Mr Tumble!
If we forget about the sickness this morning, it's been quite a good day and loved playing with Louis and surprising him when he came home from school. I had a craving for a banana a few moments ago but we have none in the house, so when Nana announced she was going to the shop, I said "Don't forget my Banana" which seemed to amuse everyone, but hey I'm a kid that's my job.
I've had a great 5 hours at home but just like Cinderella I have to run off into the night and get back to hospital but don't think I'm going straight to bed though, as a girl has to check out the play room first.
Night Night and I will update you all tomorrow
12th January 2006
As for me I'm afraid I have been quite poorly again today, I was allowed home from hospital for just a few hours but been very tired and very sick. I feel quite hungry but unable to tolerate anything for long due to constant sickness.
I think when I return to hospital this evening to be hooked up to the machines again, they may have to increase my anti sickness medicines.
Hopefully when I awake tomorrow, I will feel much better and a little like my old self again, it's quite a relief to know that in 7 days time I will not be having Chemotherapy.
For people that have just joined my story, I have been having chemotherapy every 10 days, and usually by Day 9 I have found myself on top form and feeling fantastic only to be knocked back down again on Day 10. So we are really looking forward to the next week or so.
If I'm feeling better tomorrow, I may let Daddy take a picture of my cheeky grin again, so you can see how I'm getting on.
Thank-You so much for all the lovely e-mails of support I have received and rest assured I will reply to all of them, it's just taking a little longer at the moment as there are so many.
11th January 2006
Before my illness I sat at home singing along to shows like The X-Factor and with my curly locks, blue eyes and cheeky smile, my family joked I will be a celebrity one day, but nothing has prepared me for the overwhelming support from people all over the world today as my 15 minutes of fame came very early in my life. I only wish that it could be under better circumstances and for better reasons though.
My story was featured in the Daily Mail and The Sun today and Daddy had to make a quick call to the lovely people at Rooted Design who host this website for me, and warn them that my site may get a few more visitors and to increase the bandwidth to stop it crashing. Lucky he did as over 4,500 people have dropped by!
So a huge thank-you to all at Rooted Design for making sure the site dealt with our extra visitors.
I've never been so popular and TV, Radio and so many Magazines have all been contacting me, but before we all get excited, I'm afraid although round 8 of my chemotherapy has just finished, it has hit me hard today and I have been very tired, poorly and a little upset. I also have dark circles around my eyes and not looking my best, so not ready for the cameras just yet. Just because a girl is fighting cancer, you still want to look your best you know!
Thank-You so much for the parents of other children who have been fighting Neuroblastoma, that have contacted us with some wonderful and positive stories. All too often I only get to hear about the sad stories so it's so refreshing to hear from children that have beaten this nasty disease.
To all that have e-mailed me and not yet had a reply, I will reply very soon, we have had so many today it's taking a little longer than expected.
I am very very tired now and not feeling too good, so will say goodnight and thank-you for making a little girl feel special.
10th January 2006
I'm famous for the day! I awoke this morning to discover that I am on the front page of our local paper the Derby Evening Telegraph. I have put pictures and links to the story on the left hand side under Press Cuttings if you haven't seen it yet.
There were a few little errors as it suggested I have blood transfusions everyday, we all know I have had to endure countless Blood Transfusions and eternally grateful to Blood Donors out there, but everyday is too much even for me.
As you all know I am on my the 8th and final chemotherapy at the moment but there is still a very long way to go in my treatment. There are lots of tests to come to see if the chemotherapy has shrunk the tumour, and an operation to remove it and possibly a Kidney too.
We also have the Stem Cell rescue to look forward to which is like Bone Marrow transplant but I will be given my own Bone Marrow back. All this is in the coming months though, so I'm just taking one step at a time sweet Jesus, hang on a minute, I feel a song coming on.
I have not felt too bad today but quite tired so had a afternoon nap, but not too much to report on.
Huge Thanks are needed to everyone at The Queens Medical Centre in Nottingham who really are unsung heroes and work so hard at not only making me better but keep me smiling even on bad days.
I'm not the only one thanking them though as I know my Mummy, Daddy, Nana Pam, Nana Diane, Grandad Dave and all of our family appreciate all of the staffs efforts. So to EVERYONE at the QMC we salute you!
9th January 2006
I stayed up until 23:30 last night and was singing and laughing for ages, but kept waking in the night very teary and was quite poorly. So it was quite a long night for Daddy and me.
Awoke this morning and it's time for round 8 of my chemotherapy which is my final course before my operation to remove the tumour. Yippee!
I expect a rough couple of days but finally feel like we are getting somewhere, and that I'm moving forward in my treatment. 8 intense courses of chemotherapy really knocks it out of you, but as you all know, I can always manage a smile and a song.
8th January 2006
The hospital does not know what's hit them, I'm back in town, and got a big play car from the playroom and took it for a spin down the corridor on the ward. I was heard singing an old Madness song I like Driving In My Car as I was zooming down the ward.
I decided to keep a low profile for the rest of the day and spent ages making things with glue, hearts and feathers etc from my buddies at Post Pals.
Before Christmas I was made Pal of the month on a card making forum website and received loads of fantastic hand made cards from all over the world, the effort that went into them was amazing. To see the winning cards Click Here.
Here I am with some of the cards made just for me.
7th January 2006
Just when things were starting to look good, I'm afraid my temperature went up to 38 again, it appears that I have an infection and will have to remain in hospital for the next few days on antibiotics.
I'm also due another blood transfusion, and at times like this it makes you realise just how much we take for granted the thousands of blood donors out there, so if you are reading this, thinking I wish I could help, why not pop along to http://www.blood.co.uk/ and make a difference in this crazy old world. Without these unsung heroes I would not be here now talking to you and it doesn't cost you a penny, Daddy says he will do it just for the free biscuit afterwards.
Daddy's friend Simon Redfern brought me a fantastic Roly Mo toy which has kept me smiling so thank-you so much.
6th January 2006
At Home with Louis I enjoy a perfect diet of Coco Pops and Ribena!
I'm on a roll, I managed to escape hospital for the afternoon, it's amazing the difference just a few hours at home makes.
Still neutrapenic (seriously low blood and marrow levels), my HGB count has dropped to 8.4 and platelets are now only 22, and they are awaiting results from bloods that were taken this morning to see if I require a transfusion this afternoon or tonight.
Meanwhile Mummy has the job of giving me a mountain of medication, watching my temperature and give me feeds via my NG tube. As for me I'm just chilling out watching CBeebies laughing at all the fuss.
Just had my first feed of the day via my NG tube but was sick shortly afterwards, which is a little worrying but maybe this is last weeks round 7 of chemotherapy kicking in, as my blood levels are dropping fast.
Fingers crossed I can keep a low profile though and stay at home until 7pm tonight so I can see my cheeky brother Louis when he comes home from school
5th January 2006
I was allowed home this morning, after 3 months being mainly inside hospital the last few days have been a welcome surprise.
However my Platelets have dropped to 24 and I'm still neutropenic so if the hospital calls to advise they have dropped further I will be rushed back to again for a transfusion.
My temperature has been hovering around 37.5 so if this reaches 38, then I'm off to hospital again.
Luckily I was ok, and returned to hospital at 8pm to be hooked back up to those machines for my nightly TPN feed which takes 12 hours.
4th January 2006
What a week and start to the New Year, sorry for the delay in updating you all on my progress but it's quite mad here. Despite being quite poorly, I have been allowed home for just a few hours, which is fantastic and always puts a smile back on my face.
The last 2 days I have been allowed home from around 1pm but have to be back at hospital for early evening to be hooked up back to the dreaded machines again, but just being home for a couple of hours makes me so happy. I get to play with my new toys from Christmas and my brother Louis really enjoys playing with me and looking after me too. He's a real sweetheart but don't tell him I told you that.
Round 7 of chemotherapy has now finished which means only one more to go, YIPPEE! I'm still suffering a little with low platelets and diarrhoea that looks like mint sauce! but it will take more than that to wipe the smile off my face.
You may remember that after round 4 of my chemotherapy I had a scan on my bone marrow to see if the cancer was still present, we finally got results of this yesterday. Unfortunately there was still evidence of Neuroblastoma in my Bone Marrow but will be tested again after the 8th and final chemotherapy, which will hopefully tell a different story. So please everybody keep your fingers crossed that my treatment continues to work.
The time is now 1pm and back home for a few hours but the hospital warn they may call me to be rushed back as I may require a platelet transfusion again, but they are awaiting results of tests to confirm this.
31st December 2005
NEW YEARS EVE!
Everybody's preparing for new year celebrations and I find myself hooked up to many machines in my room which is not the Rock N Roll lifestyle I quite imagined.
Very upset again today and this round of chemotherapy really has knocked me back, and spent most of the day screaming and crying uncontrollably. Mummy and Nana Pam managed to wheel my machine down the corridor for a little walk off the ward to see Sully from Monsters Inc but even this wasn't enough to raise a smile.
Poor Mummy and Nana Pam were very patient with me as I cried throughout the day and refused all help and goodwill, I just feel so down at the moment.
Daddy arrived for the nightshift and we attempted to see in the New Year with Jools Holland on the TV but again I was just too upset and cried for much of the night again. I've gone 2-3 nights with hardly any sleep so shattered too but hey didn't Keith Richards go 2 weeks without sleep once?
The chemotherapy round 7 has now finished and was quite nasty, but hoping to bounce back again over the next few days, and decided to dedicate the old Chumbawamba hit Tubthumping song to myself. Sing it with me kids, I get knocked down, But I get up again, You're never going to keep me down.
30th December 2005
When a girl starts to feel like her old self again, it can mean only one thing. That's right you guessed it, round 7 of chemotherapy started today and it seemed to hit me all at once.
I was fine for most of the day and was singing until 23:30 and the nurse said it was the happiest she had ever seen me, but then at 00:30 it was like somebody had flicked a switch and I turned into the little girl from the Exorcist movie. I have been so upset and cried all night long, I think it's a combination of the dreaded chemo and all them medication that my poor little body has to endure at the moment.
29th December 2005
What a Night! Last night I had diarrhoea so was back in a nappy, It was -6 outside but I had a temperature of 38.3 and high blood pressure. I awoke this morning and was sick!
You could say things can only get better but then the Doctors tell me my Platelets are only 7. Another transfusion is needed and I have to remain in hospital, but hey we've had a good few days so mustn't grumble and all that.
28th December 2005
I was allowed home at around 11am, and was busy enjoying myself with all my Christmas Toys, and looking at Louis building a snowman and having snowball fights in the garden with Uncle Gordon and Daddy, when the Hospital called around 14:30 to tell me that my Magnesium has dropped to a very dangerous level, so need to return to hospital for a top up ASAP.
So back I go again to the hospital and a little disappointed that I have not been able to be at home longer this Christmas, but at the same over the moon I was at home Christmas Morning, so can't complain too much
Round 7 of Chemotherapy is on Friday, so looks like I will have to get used to the idea of being back in hospital.
27th December 2005
The Doctors advised that my HDB blood count has dropped to only 7 so I will need a blood transfusion, we waited until 3pm but the blood had not arrived so I went home until 6pm and then had a blood transfusion through the night back in hospital. Hopefully this will sort me out for a few days.
Late last night I hear that Aunty Kerron became hooked on a XBox game called Grabbed by the Ghoulies! Which sounds quite painful.
26th December 2005
Doctors came to see me in the hospital and advised my Blood Pressure was quite high and that they need to decrease one set of my medication whilst increasing another. However this will not be done until I am back in hospital under observation for obvious reasons.
They also advised that my magnesium level is low and will need to have this topped up via yet another machine.
I was allowed at home at 1:30pm if I promised to be back at the hospital by 8pm, so I'm off for some fun with my new toys and to play with my brother Louis.
I am getting quite attached to my Uncle Gordon who kindly takes me for most of my very many Wee Wee's throughout the day, and he makes me smile too. Poor Aunty Kerron had the task of putting the game Mouse Trap together for my brother Louis.
25th December 2005
I awoke at 08:30am quite excited and rushed down the stairs with my brother Louis to see if Santa had visited in the night. He most certainly did as our living room was full of presents and there wasn't much room to move and barely enough to squeeze Mummy, Daddy, Nana Pam, Kerron, Gordon, my brother and I into the room.
I think it must have taken me around 9 hours to open everything, as I had to take a breather halfway through but so happy with all my presents and being home for Christmas Day.
Although I am infamous for not eating via the old fashioned method of the mouth, I had a rest from my NG Tube and actually sat down for Christmas dinner and loved everything. I even pulled a few crackers and popped a few party poppers.
Just like Cinderella I had to rush away from the party, as I had to be back at hospital by 8pm to be hooked back up to the machines for my TPN feed again.
Huge Thank-You to Aunty Kerron and Uncle Gordon for not only bringing all the food for Christmas Dinner but even made the festive family dinner too and it was yummy too.
Please check out the photo section on the site for some excellent pictures of my Christmas.
24th December 2005
For the last few days I have been very quiet which is not like me at all, I have barely spoken at all and only communicated via nodding which had everyone a little worried as I was looking quite depressed but again this could be down to my medication again.
However late this morning I left the hospital and went back home to wait for Santa and had a wonderful surprise because of so many cards and gifts from my friends at Post Pals. All the Girls at Georgie's fund sent a massive box with loads of presents for me and my brother, there will be some great pictures on the photo section of my site in the next few days of Louis and I in some great fancy dress costumes.
Being home again and opening so many cards and gifts from my friends seemed to do the trick and I have not stopped talking, laughing and singing since. I'm back to my old self, so thank-you to everyone who has kept their fingers crossed for me coming home in time for Santa.
We have so much food for me to be fed through my Wiggley's and medication to give on a regular basis that Mummy keeps running off to check my chart every hour but it's all good fun.
Aunty Kerron and Uncle Gordon have come to see me and I have enjoyed cuddling up with Gordon and singing my favourite songs to him.
I am really excited about Santa coming, so going to bed now and hope to have lots of wonderful pictures for you all over the next few days.
Huge thank-you to Robbie Quantrill and all the children at Grafton Junior School for making me so many nice cards which really cheered me up when I got home today.
Many Thanks also to Fiona, John, Megan, Charlotte, Liz and Lucy for my lovely present.
Massive Thank-You to All the Girls at Georgie's Fund Sally, Maria, Nina, Angela, Lynne, Liz and Tania for the huge box of goodies for both Louis and I. Pictures to follow
23rd December 2005
I feel a little better today and have been flashing my trademark smile for the first time in a few days but hey, it is Christmas.
The doctors visited me this morning and the plan at the moment is to allow me home for Christmas Eve night and Christmas Day, however it appears I will have to come back to the hospital Christmas Day night to be hooked back up to TPN again. So I should be able to open my presents that Santa brings at home but spare a thought for Daddy and Me as night falls as there will be no beer for us, just the Two Ronnie's Sketchbook for company.
This could change depending on my temperature, blood pressure and blood levels so at this moment in time, coming home just for Christmas Eve is fantastic news.
Anyway I got to go now, as Nottingham Forest players are coming to see me, and I need to have a little fun at their expense. For some reason Mummy is putting on make-up and spending ages doing her hair for the first time in ages, what's all that about????
22nd December 2005
Another quiet day today as I have felt very poorly all day long and very sleepy and teary so getting as much rest as I can with the hope of coming home for Christmas.
I do have a huge thank-you to make to the Staff at Royal Mail in Derby, for some magnificent and inspiring fundraising on my behalf, Phil Hattersley started the ball rolling and Adie Mannion, Rich Conway, Steve Desmond and Gaz Winter all helped by collecting a whopping £200 from Royal Mail Staff for little old me.
We all thank-you from the bottom of our hearts for being so kind and generous at a difficult time and want to thank each and every person who donated and assure you it will be put to good use.
After speaking with Mummy and Daddy, we do not want to waste the money on even more presents as I am lucky to have so many at the moment, so we are putting £100 into my personal bank account which I will be able to access in the future. We are going to give the other £100 to our Neuroblastoma charity of choice Georgie's Fund who have been so helpful and supportive of our family and even offered to help the hospital that I am staying at.
Counter Solutions and Grandad Dave's place of work are also currently raising money for Georgie's Fund so hoping to have some fantastic news for them after Christmas.
I will hopefully update the fundraising section on the site with much more detail over the Christmas period.
21st December 2005
I have been hooked up to round 6 of my chemotherapy until 3pm today and have been very sleepy and teary throughout. I'm just hoping to get plenty of rest and hope I recover in time for Christmas.
Not too much to report today but tomorrow I should have some more pictures and news of fundraising by staff at Royal Mail.
20th December 2005
Despite having a fantastic day yesterday, I had a restless night and woke several times feeling very teary and upset, but I woke up this morning feeling great again so cannot grumble too much.
After playing with my many toys I was hooked up to my chemotherapy round 6 this morning, not too long after this I became very tired and had a good sleep, but when I woke up, Mummy told me that the Nottingham Panthers had come to see me but left me alone because I was in the land of nod.
Hopefully if the chemotherapy does not affect me too much I will be home for Christmas Day at least, so keep an eye on my page and keep your fingers crossed for me.
My great friends Rachel and Julie from my nursery have sent me some great gifts so a huge thank-you to them and all my friends at nursery. My brother Louis tells me he is bringing me some presents from Miss Stone and everyone in his class at Corfield School tonight so quite excited about that too. I will let you know what he brings me in tomorrows update.
I smelt the sweet smell of Pizza and asked Nana Diane to get me some, The kitchen advised they were now closed, but the nice nurse said please make an exception, it's for a little girl who has not eaten anything for 2 months. 20mins later 2 little Pizza's arrived at my room, I feel like a celebrity with my demands being met but when it was put in front of me, in true diva style I said "Don't Want it!"
19th December 2005
I am back to my old self and Christmas is approaching fast and wanting to go home and wait for Santa but as we all know by now, when I'm back to my best and feeling great, it can only mean one thing. That's right Round 6 of chemotherapy is due on Tuesday.
Depending on how I am after this treatment will determine if I can go home Christmas Day, so everyone out there, keep your fingers crossed I'm home for Christmas and not wired up to TPN and blood transfusions at hospital.
Enough of the depressing talk, I have been to yet another party at the hospital today and was spotted singing and DANCING again. They tell me Nottingham Forest are coming to visit and the Nottingham Panthers so I may just have to wear my Derby County Scarf to see how they react.
18th December 2005
I have been so ill for the last week but you will all be glad to hear that today I have been back to my old self and as Daddy said "I've got my little girl back"
I have had so much post from my friends at post pals and a mountain of presents, I have also received a great box of my favourites things from Richard and Sallie Conway. If you take a look at the photo's section off my site you will see what a lucky girl I am and the difference so many kind people have made.
I would also like to thank Julie Barrett she runs a card making forum website and made me their Pal of the Month and have had so many cards and presents again, thanks to so many people's kindness from all over the world. Who said it's a bad old world eh? My faith in human nature is certainly restored now.
I have been walking, singing and dancing around the ward today, laughing with the nurses and kept Daddy up until 00:30 singing the Barney Theme complete with kisses and cuddles.
The Doctors warn that I am neutropenic at the moment so hoping that I do not come down with any infections this week or I will be in hospital for Christmas, despite that I feel Fantastic!
16th December 2005
Last night I had 150ml of special milkshake through my tube and was not sick!
The Doctors arrived this morning and advised they want to resume feeding me through the NG tube again and try to build up my appetite so I can come home for Christmas. They were delighted that I had not been sick for several days so looking forward to building me back up again.
However as soon as they left the room guess what happened??? I was sick everywhere again and most of the 150ml of milkshake and pieces of orange from last night made an unwelcome return.
I have been in quite good spirits today but have been sick several times after being fed through my NG tube again. This is what has been keeping me in hospital for so long. I have not eaten much orally for sometime now, and whenever I am fed via the NG tube I am sick also so the doctors have the work cut out with me.
Hopefully if I can begin to tolerate food again soon, I will make it home for Christmas, keep your fingers crossed for me.
15th December 2005
Since coming off a steroid medicine and something called DOMPERIDONE my mood has picked up quite dramatically last night, and although I'm not one to broadcast my toilet habits to the entire world, you will be glad to hear that my problems of diarrhoea also seem to have cleared up. They may put me back on the domperidone tomorrow and see if the discomfort returns.
The Doctors tried me on a new medicine for my blood pressure today, which made me sick straight afterwards but I am on a combination of 3 different medicines for my troublesome blood pressure alone, so again all my medication is being monitored closely.
My little body is on so much medicine at the moment many times a day and there will obviously be side affects and it is a fine balancing act of getting the medication to do it's job whilst keeping me in top form too.
Overall although I'm feeling a little better, I have still been feeling very sorry for myself and getting fed up of being hooked up to several machines at once. Sometimes I just want to go for a little walk around the ward and being unable to do little things like this can be so frustrating.
So what can a girl do??? there's only one thing to do and that's P.A.R.T.Y. I got invited to two Christmas Parties in the hospital and decided the only fair thing to do was to attend both and had a great time and was even seen singing my favourite tune Heads, Shoulders, Knees and Toes!
When I got back to my room I even managed to eat 4 pieces of orange so maybe, just maybe I'm back on the up!
14th December 2005
I am still very poorly and having trouble shaking this sickness and diarrhoea off combined with generally feeling quite miserable.
At 2pm Mummy and Nana Pam smuggled me out of the hospital to see my brother Louis perform in his school nativity play as a shepherd. It was great to get out of the hospital and see Louis smiling as he saw me in the audience.
Louis was really good in the play and I enjoyed seeing him, but I was feeling very poorly and was back in my hospital bed by 4pm.
I had an ear test but just wasn't in the mood for it today and they then told me they have found some sugar in my urine so they will be monitoring this closely over the next few days, but advised me not to worry too much about it.
As I have been so poorly the last few days The Doctors are taking me off some of the medicines that I'm on, which I may be reacting too and causing me so much discomfort.
13th December 2005
Once again a restless night last night as I'm still suffering with a little sickness and diarrhoea. I am also feeling a little irritable and just want to be cuddled and carried by my Mummy.
Luckily I have so many cards and presents to keep me going, I would like to thank everyone at the CMPC Forum Rakers who have sent me loads of lovely handmade Christmas Cards which are fantastic and have been made with so much love. Maybe somebody could e-mail me the website so I can drop by and all the members there.
I am hoping to sneak out of hospital tomorrow for a few hours to see me brother Louis as a Shepherd in his School Nativity play, so may need to exercise my stealth mode to escape without the nurses noticing. I will let you know how I get on.
Thank-You to my Great Grandma Audrey and Grandad Fred for my excellent present. which I have been creating mini art master pieces with.
12th December 2005
Had my worse night yet since treatment began last night as my temperature remained over 38, Blood Pressure is still very high, Sickness and diarrhoea all night long.
Despite being only 2, I'm a big girl and never wear nappies, however for the first time last night I had no control at all and had to wear nappies again, which is something I don't like doing at all and got a little upset about.
I have been feeling down for most of today as constant Sickness and Diarrhoea are beginning to take their toll on me, and just generally feeling a little fed up.
11th December 2005
I woke up in a great mood thanks to so many people at Post Pals who put so much time, effort and thought into sending me cards, presents and e-mails. I had so many special gifts I had a smile on my face all morning and will be thanking you all very soon.
My Post Pals Elf Lauren deserves a special mention for sending a HUGE box of goodies all the way from USA, there was lovely drawings and pictures all over the box and the thought that went into the box and it's contents is appreciated more than you know. This also goes to everyone who sent cards, I will take some pictures over the next few days to show you all what a lucky girl I am to have you all thinking of me.
Starting the day with a smile thanks to friends from Post Pals
Mummy, Nana Diane, Grandad Dave and my cheeky brother Louis came to spend the daytime with me and I needed all of them, as it was not going to be as good as I had planned today.
In the afternoon, I became very poorly and my temperature rose to 38.9, I also became very sick and my infamous NG tube came out again. If that wasn't enough I'm also having a nasty time with sickness and diarrhoea. I have felt poorly all day.
10th December 2005
I'm on round 5 of my chemotherapy and it has wasted no time at all in knocking me back a little, I have been quite sick and my temperature has gone over 38 again.
Daddy received a mountain of cards and presents from Post Pals and put them all in a giant Santa Sack and brought them to hospital to cheer me up, but I was too tired and upset to raise a smile.
9th December 2005
Mummy had a little scare last night when I appeared to have a reaction to my medicine or food again and went straight to sleep and awoke very teary. The Doctors kept me off my feed last night and monitored me closely but am fine again, so it's business as usual today. Although feeling good, it time to prepare for yet another bout of chemotherapy again.
When I awoke this morning I was in quite a good mood and thought you may want to see me in my Christmas hat, blue glasses and my Doctors kit.
The Doctors also revealed that my tumour before treatment was approx 6x5 inches but the Ultrasound scan now shows it at around 3x2 Inches which is fantastic news as it shows the treatment is shrinking the tumour as planned. We are still awaiting the Bone Marrow test results though but I will keep you all posted.
Daddy's friend tells me I have 2 massive parcels from Post Pals and loads of cards too, so quite excited about opening them too, sounds like some more fun pictures coming your way.
8th December 2005
Had a good night's sleep last night, and started the day with 100ml of super milkshake though my NG tube but afraid I was quite sick soon after, the NG tube stayed in place though, so not moaning too much.
Several times a day I have medicines via my NG tube and today managed to give myself my own medicine through a syringe, so won't be needing mummy and daddy's help much longer because I'm an independent woman now.
I have since had several other feeds today which I have kept down and have been feeling great and in a real Christmas mood now. I helped make some cool Christmas hats out of the hospital sick bowls today and made everyone smile walking around in my new head gear and blue sunglasses. I also made a hat for another girl on the ward so now have a partner in crime.
My room is now turning into a Santa's Grotto as I have managed to blag a singing and dancing Santa and another Christmas Tree so it's looking quite good now.
7th December 2005
Good news gang, my NG tube has not fallen out and my sickness has calmed down a little. My Blood pressure is still high though but two out of three ain't bad, I feel a song coming on!
I had a Ultrasound scan this morning and the doctor put some yucky jelly all over my belly whilst he had a look in my tummy. They will compare the pictures from this Ultrasound scan with the pictures before my treatment so they can see if the tumour is shrinking.
The doctors then put me to sleep to run tests on my Bone Marrow, hopefully results of this weeks tests will show that the treatment is working and will let you know as soon as I hear anything.
Being constantly poked and prodded is not much fun for a girl like me, but it was made so much easier today thanks to Mummy's friend from work Isobel who brought me a lovely Tweetie Pie Cuddly toy, which I have been carrying around everywhere with me.
Daddy's friend Jim Smith also brought a smile to my face with some fab jewellery and my favourite comfort food chocolate buttons.
Huge Thanks to Isobel from Balfour Beatty and Jim Smith from Royal Mail
6th December 2005
I was sick again last night and my NG tube had to be pushed back in for the 2nd time within a few hours, something that I don't look forward to at all.
Daddy and me then slept until 09:15 am this morning, and I woke up to CBeebies with a song and a smile, so looks like I am in for a good day if that's anything to go by.
A huge thank-you to the mum of Daniel B, who sent me a lovely present, She very kindly brought me a lovely new doll, and we all know I have a soft spot for dolls, my new doll has been keeping me company in my hospital bed with me. Vicks at Post Pals also sent me some cool gifts including a wicked glow stick which I had a good old fashioned rave with.
I had a test today which will reveal if my Kidneys are working ok.
I hear that I have some more Prezzies coming too! What a lucky girl I am, I will let you know as soon as I open them, YIPPEE!
at around 2pm today I was violently sick and guess what happened? that's right my NG tube has come out again, there's no worse feeling than somebody holding you down whilst this very long tube is fed up my nose, down my throat and down to my tummy, so not looking forward to having it done for the 3rd time in 24 hours. OUCH! I'm going for asleep before they try it again.
5th December 2005
Woke up this morning demanding Toast, Weetabix and Juice, but then was sick all over Daddy 20mins later. Think I had too much too soon, but what can a girl do when she's hungry.
I was fine straight after though, and enjoyed several trips to the playroom and enjoyed having a good stroll around the ward, looking at all the pictures on the ward of other poorly children.
I had a great day today until around 7pm when I was violently sick and the NG tube which you may have seen in my pictures in my nose, came out of my tummy and nose. The nurses had to refeed the tube back into my other nostril, then down my throat and back into my tummy which was not nice and my screams could be heard throughout the ward as it wasn't very nice at all.
4th December 2005
Had my best night's sleep in months last night, and woke up in a very happy mood. Had a great day playing and even said the words "I'm Hungry" a few times, my appetite is finally on it's way back.
Loved watching Charlie and the Chocolate Factory with my brother Louis and have been singing the Oompa Lumpa song ever since.
At 7pm it was time to go back to the hospital to be wired back up to the machines again. I will be in hospital all week again as the Doctors will be performing various tests to see if it I am responding to the treatment, so keep your fingers crossed for me.
3rd December 2005
I am home from hospital for the first time since November 5th! Having a great time playing with my brother and decorating our Christmas tree. I also had some fantastic presents from Daddy's work friends Beck Bramley and Marcus Cope.
I have to return to hospital at 8pm Sunday night but until then determined to make the most of being at home, check out the photo section on the right hand side to see what I have been up too.
2nd December 2005
The Doctor advised that they will need to take a Stem Cell sample soon but we will have to travel to Sheffield for this, they will take a sample from me, freeze it and then give it back to me later on in my treatment, this is like Bone Marrow transplant but I am receiving my own Bone Marrow back. Taking the sample should take between 24-hours and 48 hours but when I receive it back in several months I could be in isolation for up to 12 weeks as I will have NO immune system at all, so not looking forward to that bit at all.
Daddy went to see his friends at his works Christmas Party tonight so Nana Diane has stayed with me for the night, and I wasn't to poorly but was sick at 1am and had lots of trips to the toilets to keep her busy.
1st December 2005
Christmas is coming! Advent Calendar time!
I am still stuck in this tiny room on a separate ward and unable to leave due to being isolated for my Chicken Pox, so I have missed decorating the Christmas Tree with Tania from the playroom on my beloved Ward 38.
Due to my medication, the Chicken Pox was quite mild and after around a dozen spots they all seem to be drying up quickly. The Chemotherapy has not affected me too much yet but I have been wired up to various machines so unable to move from my bed, and they tell me my Blood Pressure is still quite high.
Mummy has been joined by Nana Diane today and I have successfully worn them both out completely! It can be quite hard, keeping me amused and smiling all day in such a tiny space but they did a cracking job, and I have been playing with loads of different toys which they have been collecting from the playroom for me. They keep asking if I'm tired and fancy a afternoon sleep but it looks like they need a rest not me!
I cannot wait to get a little freedom back and take a stroll to playroom, a walk down to the shop or even come home for my first time since November 5th but until then Mummy get me a different toy NOW!
I'm Famous! I am on the opening page of www.postpals.co.uk for December, why not pop over and say Hi to one of my new friends who also need cheering up before Christmas.
November 30th 2005
Wow! a new dawn and a new day, woke up feeling fantastic today.
My appetite is slowing picking up again as I had my favourite Coco Pops this morning which tastes fantastic going down but doesn't look so good when the nurse takes a sample from my Wiggley and get's a brown liquid substance in her syringe.
I then burst into songs such as "Incy Wincy Spider" and "Which little finger did it bite, this little finger on my right!" and had Daddy crying with laughter when I shouted "ROCK N ROLL MAN!" A few minutes later I gave my nurse a Hi Five.
After such a cracking start to the day, it's seems a shame to tell you all that I shall be starting round 4 of my chemotherapy today, so keep your fingers crossed for me.
Thank-You to all of you that are stopping by and keeping up with my progress, and for all your messages of support via my guestbook, post pals and e-mail. I love hearing from you all.
I have been on Chemotherapy all day and will be throughout the night but I have been back to my old self today. I had a lovely surprise visit from my cheeky brother Louis and loads of Presents from Lynsey, James, Dylan and Dean HUGE THANK YOU! so there have been smiles all round today.
November 29th 2005
Started the day by insisting on a bowl of Coco Pops and get them now! in true diva style. Luckily the nurse managed to find some quite quickly to keep me quiet.
I was given some steroids today which seemed to turn me into a angry little princess so we stopped them quite quickly, I managed to persuade the nurses to let me off the ward for a little while and a visit to the hospital shop, but I'm afraid even that wasn't enough to keep me smiling today as all day I have been a little stir crazy, mostly because I am isolated to one room I think.
The nurses also had the nasty job of changing the dressing around my Wiggley's which was stuck to my skin, and I screamed the ward down whilst it was slowly peeled from my little chest. OUCH! just thinking about it hurts!
All in all not a great day I am afraid, apart from getting some lovely presents from Steve and Irene and my Great Nana Audrey and Great Grandad Fred, so many thanks for helping get me through a nasty day.
November 28th 2005
Late last night the Doctor came to see me again as my blood pressure had increased even further and there was growing concern because it was so high, and due to my condition it is a very fine balance when giving me any medicine as it could do more harm than good.
In the end they decided to give me some medicine to bring the blood pressure down which had to be taken orally and was DISGUSTING! it made me throw up everywhere. However within the hour my blood pressure was back to a normal level and lower than it has been for a while.
9am this morning, wired up to so many machines but still sending you all a smile.
When Mummy and Nana Pam arrived this morning my blood pressure had increased again but before a decision was made on whether to give me medicine or not, it returned to normal levels on it's own for a while, but later in the afternoon it went up again so had to have yet more medicine. I'm on so many different medicines at the moment and hooked up to different machines which always seem to start beeping. They are driving me Nuts!
I have felt quite moody today because I am confined to this tiny room with no escape from the doctors, there's no access to the playroom and they tell me I'm banned from taking a walk to the hospital shop to pick up a CBeebies magazine, it really cannot get any worse than that!!!
I have been ordering Mummy and Nana Pam to fetch more toys for me from the playroom but I'm just feeling a little claustrophobic, poorly, upset and fed up with myself today.
Huge thank-you to Sue, Steve, Amy and Hayley for my new headwear which should keep my head warm in these cold winter months.
Daddy tells me he has some presents for me from Steve and Irene so will hopefully have some pictures of that tomorrow.
November 27th 2005
Back on October 21st my brother Louis came home from school with Chicken Pox and I was isolated in hospital and given loads of medicine to stop me from catching it from him. As the weeks went by and Louis fully recovered it was thought that I had escaped the nasty virus.
However it appears that the medicine was suppressing Chicken Pox but it has been hanging around in my little body and now my immune system is so low it has surfaced. My constant sickness the last few weeks could also have something to do with the dreaded Chicken Pox.
Doctors are checking on me constantly today as my blood pressure has rocketed to 160/100 which is very high and they are doing their best to bring this down as quickly as possible.
I have not been too bad today but a combination of sore Chicken Pox sores and being unable to leave the room all day have been very frustrating for me.
Huge thank-you to Post Pals for sending me some fantastic glow in the dark moon and starts which I have stuck to the wall in my room and the lovely cards from post pals also put a smile on my face too.
Big thank-you to Ella Higgins for my lovely parcel of goodies, I love the little mouse and cheese!
November 26th 2005
I now have 4 sores on my body which a few days ago the doctor thought could have been due to an infection but there are now growing fears that it could be the dreaded Chicken Pox.
Chicken Pox can be very serious for a girl like me with a very low immune system, low Blood count and low Platelets, I also run the high risk of infecting the other poorly children on the ward so I have been isolated from everyone, but all I want to do is to visit the playroom so getting very very frustrated.
**UPDATE** I can confirm that I have Chicken Pox! I have now been moved to a different hospital ward to my own room and not allowed to leave the room, so things could get interesting over the next few days when they try and stop me sneaking out to the playroom.
My chemotherapy has been postponed at the moment and I am now on even more medicines to get me well again very quickly so they can resume treatment.
November 25th 2005
Hooray! I went through the night without being sick!
I woke up this morning in a really good mood and have been singing my favourite songs including my own special version of "Wheels On The Bus" I change the lyrics to Daddy on the bus says Give me a Smile and Mummy on the bus says Give me a Cuddle! It seems to go down quite well and may even have a future in song writing so watch this space.
I seem to have been in hospital forever now and won't be coming home for a few days yet because it's round 4 of Chemotherapy on Saturday and amazed at how quickly the 10 days come around.
2 people went home worn out today and I wasn't one of them! That's right I have been on top form again and wore poor Nana Diane and Mummy out playing so many games and dragging them all over the hospital.
November 24th 2005
My temperature has now come back down to a normal level but afraid that I am still quite sick, my medication has now been increased to combat my constant sickness.
It's been a strange day where my energy and moods have been up and down all day, I went to a party at the hospital for little children like myself and had a great time, I have been playing with my balloon ever since! I even managed to win some sweets for my little brother Louis.
I had an allergic reaction to some of my medicine today which was quite scary for Mummy and Nana because I went very very sleepy, my eyes rolled upwards and I was delirious, but the doctor came to see me and advised it was due to some new medicine that didn't agree with me, so I won't be having that again!
A good 2-3 hours sleep got it out of my system and was then back on top form for when Daddy arrived and we were singing and laughing until 11:30pm last night.
November 23rd 2005
I had a very restless night last night and my temperature had reached 38.7 so had some medicine to help bring it back down again, but it remained over 38 throughout the night. If you were a little curious if I was sick again, I can confirm I was quite poorly again several times last night and woke up this morning quite pale but with my smile still firmly in place.
I have been very tired today and even had to retire from my beloved playroom on several occasions, and the Doctors said that my blood counts are dropping again, so may have to have yet another blood transfusion soon.
Enough of my troubles, it's time I thanked all of you for stopping by and seeing how I am getting on, it seems I am much more popular than Daddy ever thought as he received an e-mail from the people we host this website with and they said we have exceeded out bandwidth of 1GB for November already! We are approaching 5,000 visitors since we launched around 5 weeks ago, which is AMAZING! so Daddy will have to upgrade our package. That will teach him to under estimate little old me!
November 22nd 2005
I hate being so darn predictable but I was sick at 2am this morning and just for good measure again at 7am, at 9am this morning Daddy had a call from school, and was told my cheeky brother Louis had slipped on some ice, cut his hand and has been sick several times since, so sounds like Daddy is in for some more fun today when he gets home.
Mummy and Nana Pam had a hard time keeping me calm today as my dressing needed to be changed around my Wiggly's and it had stuck to my skin and was not coming away without alot of slow peeling away from my skin, I'm quite a brave little girl, but on this occasion had no alternative but to scream the place down, but I am sure there are a few grown men out there that would cry in the same situation.
I have also been quite sick today, and on top of that my Platelet's had dropped to 12 so I need another transfusion this afternoon as soon as they arrive from Sheffield.
Not a good day I am afraid, but hey the only way is up.
November 21st 2005
I started the day at 7am by being sick again I'm afraid, I'm in good hands though and the dietician came to see me again and they have a battle plan to sort this tummy of mine out once and for all.
The doctors have also gave Mummy some information on new "TRIAL" treatments, so they have lots of paper to read before making any decisions but I will let you all know what they decide as soon as I know.
I made poor Daddy sit through the Barney's Christmas Video this morning TWICE, he seemed in great pain whilst the Twelve Days of Christmas was being sung by some wholesome young children with big smiles and lot's of enthusiasm born in stage school. Daddy says that back in 2003 US interrogators used the purple dinosaur's theme to break Iraqi prisoners. Daddy knows how they felt.
I know you guys love Barney too, so come on sing with me
"I love you. You love me. We're best friends like friends should be. With a great big hug and a kiss from me to you, won't you say you love me too?"
Not much else to report today as I have been in good spirits and smiling of course, much of the day was spent in the playroom with Mummy and Nana Pam.
November 20th 2005
Sorry for not updating this page for a few days but things have been very up and down. One minute I am laughing and singing, the next I am in floods of tears or generally having a good old moan, but hey that's Chemotherapy for you.
I have become quite good at teasing the nurses, I am usually heard laughing and singing throughout the ward until a nurse comes in, and I then put my best poker face on, the nurses are lovely and try to get me to smile but I reveal nothing. However as soon as the nurse leaves the room I say to Mummy or Daddy "She's a really really nice lady and she looks after me" and give a huge smile!
My HGB count is still high, but my platelet levels had dropped to only 20 again, and My temperature was 38 so I have to stay in hospital for a transfusion and antibiotics to keep my temperature down and stop any infection. The main reason for me staying in hospital for so long though is that I am still not tolerating food which is fed via the NG Tube in my nose. The food is fed to me during the night very slowly but I have been sick every morning. As soon as I can keep some food down I will be coming home again.
We had some positive news when the Doctor examined me he advised the treatment appears to be working and visibly it looks like the tumour is shrinking which is fantastic news as there are instances of Neuroblastoma not responding to chemotherapy, so hopefully we are over the first hurdle. However we must still exercise caution as no actual tests have been performed yet, it is just my belly was huge and large lump could clearly be seen but this appears to be shrinking.
Mummy is the queen of multi tasking and can now push me in the toy car in the playroom room whilst also pushing my stand with all my treatments which contains so many wires.
My cheeky brother Louis spent Saturday and Sunday at the hospital with me, and we had a great time in the playroom and I showed him where everything was, Louis loved it so many cupboards with every game you can think of. Mummy was joined by Nana Pam on Saturday and Nana Diane and Grandad Dave on Sunday. Daddy is on the nightshift with me, but neither of us get much sleep.
My hair is falling out rapidly now, so Daddy cut all of his off too and looks so funny, Louis helped him do it and judging by the photo's looks like they had so much fun. See the Photo's section of my site as we will be adding more photo's today.
Huge Thank-You to Sue, Steve, Hayley and Amy for my pretty clothes, I love the flashing lights.
November 17th 2005
The envelope contained a new bag to hang around my neck for my Wiggly, this did not stop me crying but then I emptied the envelope and lots and lots of coloured paper stars fell all over me, and that did the trick, all smiles again. Loved playing with the stars for ages, doesn't take much to keep me happy does it?
The doctor came into see me, trying to get a glimpse of my world famous grin, but I thought I would keep him waiting and opted for my best poker face instead.
I am still on chemotherapy today and despite my tummy still hurting, managed to hit the playroom with Mummy and Nana Diane and forget about it all for much of the day.
November 16th 2005
Had a rough night last night where poor Daddy ended up on the wrong side of wee, pooh, sick and clumps of my hair, by morning he looked like something he had emerged from the crackerjack gunge tank. We did have a good giggle about it though.
Round 3 of chemotherapy started today which started to take affect quite quickly making me a little tired and upset for much of the day.
My hair is slowly coming out, but Daddy promised to remove his locks too, so look out for some freaky pictures of him over the next few days.
November 15th 2005
What a cracking couple of days! I have been feeling so good, the hospital let me go home at 1pm today Hoooorah!
Had a great day, and surprised my brother Louis when he came home from school, we had so much fun with the digital camera where we were both taking pictures of anything that moved
On a downside I have to return to hospital tonight for 8pm for round 3 of my chemotherapy which is a shame as I was just starting to feel like my old self again.
This morning I noticed that my hair is slowly beginning to come out, so this could be the end of my trademark curly hair for a few months, but have been trying out some fab new head gear supplied by Daddy's Aunty Sue.
Just added some new pictures to the photo's section of my site.
November 14th 2005
I have decided to take a day off from rambling on about Blood counts, Platelet's, Food Tolerance and NG Tubes because I am having a great couple of days and it seems a shame to spoil it.
Kerron and Gordon came to see me with lots of presents at the weekend and I had great delight in showing them round the playroom, I have been singing, smiling, laughing and generally entertaining anyone that looks my way.
Despite a few wires restricting me from running up and down the ward, I have been feeling very good and seem to have a knack of making people smile, which I may have to use to my advantage.
I have just put some more pictures on the Photo's section of the site so you can see what I have been up to recently.
HUGE THANK-YOU to Kate Dee from Post Pals who made sure I started the day with a massive smile on my face when the postman delivered a new doll which I can feed at bedtime.
November 13th 2005
My HGB Count is now a whopping 13 but my platelet's have dropped to 79, however this is to be expected with my condition, and doctors advise there are very few children on the ward with platelet levels over 100.
I have been having food through the NG tube in my nose at a much lower level of 10ml, but doctors want to increase this slowly to 30ml to build up my tolerance of food.
My Intake was increased to 15ml last night and at 8am this morning I was quite sick again, so my little tummy is still having problems with food tolerance.
Apart from this I am in good spirits and had a nice surprise from Aunty Kerron and Uncle Gordon who visited me and brought me lot's of presents and even some for my cheeky brother Louis.
So a huge thank-you to Kerron and Gordon this weekend, not just for the presents but for keeping me smiling too and letting me show them round the infamous playroom
November 12th 2005
The numerous blood transfusions appear to have done the trick as my HGB Blood count is back up to 10 and my Platelet's are a whopping 150 again. I have been busy playing, singing and entertaining everyone ever since.
If you send me an e-mail I will send you a little video clip of me singing at 23:35 last night!
I also regained some of my appetite, so over the next few days we are hoping to build on this and hope my blood count levels will not drop again.
The Doctors advised they are not concerned with how quickly my bloods dropped as this could be a sign that the treatment is working and that the tumour is dying. The tumour will be trying to use the blood to survive but the intensive chemotherapy is now shrinking it rapidly.
So everyone keep your fingers crossed for me.
November 11th 2005
I had two blood transfusions yesterday, and feel a little better and from 09:45 this morning I hit the playroom again, which is always a excellent start to the day.
I have quite a funny story for you today, a few days ago I was very very poorly and pretty much too tired to move and spent much of the day lying down in bed hooked up to various machines, the mood turned quite sombre and everyone sat in the room in complete silence, I don't know about you guys but there's nothing I hate more than uncomfortable silences.
What could I do? too tired to move, everybody silent and sad!
I was able to break the silence and the sad mood of the room by suddenly singing
Whoa-o the Hokey
It seemed to go down quite well as suddenly the room was full of laughter and smiles.
HUGE THANK-YOU to
Hayley, Amy, Sue and Steve for sending me loads of toys to keep me smiling,
nothing better than getting new toys! Louis sends a thank-you for his prezzies
November 10th 2005
I feel very tired today, and a visit from the doctors this morning confirmed the reason for this.
Unfortunately, although I have had 2 blood transfusions and 2 Platelet Transfusions in the last few days my HGB (blood count) has dropped again to 5.7 (10-12 is the normal for a girl my age).
My Platelet level is very very low at only 16 (normal is 100-150) you may have noticed that in yesterday's pictures my legs were showing a few bruises and this will be because of my levels being so low. Platelet's stop the blood from clotting and without another transfusion I could suffer bleeding from nose, eyes, and also internally, which is horrific.
So for today's agenda, I will be having a blood transfusion, a platelet transfusion and back on the food fed through my Wiggly this evening, so will be hooked up to a machine which can be so frustrating when I want to play.
This is going to be long rollercoaster ride of a journey for me and my family.
I have noticed a few people have signed my guestbook from the G4 website, a huge thank-you to you all! would you mind e-mailing me the website as I have no idea what this site is, unless I'm being a little slow, but hey I'm only 2.
November 9th 2005
My blood transfusion yesterday had taken my blood count to 7.2 which is still a little low, so had yet another blood transfusion throughout last night and we are awaiting test results to see what affect this has made on me.
I am still unable to tolerate food through my NG tube and still suffering from quite nasty diarrhoea and sickness so I was fed through my wiggly which will keep me in hospital for few more days yet.
I was unable to drink or eat anything last night from 11pm onwards, so decided to wake up at 23:30 and demand Milk and yoghurts just to see if Daddy could calm me down, and he didn't do a bad job. I was up much of the night again asking Daddy to get the white gloves back out for my many many toilet requests.
After a night of blood transfusions, food fed through my Wiggly, and many toilet requests, I woke up this morning singing Old McDonald with the Tweenies and shouting feed me....feed me now and tucked into my favourite fromage frais.
Mummy then arrived with Nana Diane and Granddad Dave to look after me today and I had a few cravings, I began saying I want Beans....I want Beans I want Beans! and throughout the day polished off 3 quarters of a tin of baked beans and managed to keep them down which is fantastic. However Daddy may be in for a messy night tonight.
A huge thank-you to everyone at my Pre-school for my card and LOVELY presents, I will get Daddy to take some pictures of me with them soon. I have been quite lucky today, as I also had a visit from Santa on the hospital ward that gave me some great Prezzies too.
November 8th 2005
I had a blood transfusion in the early hours and have a Platelet Transfusion to look forward to later today. After this, they will run further tests to see if I need further transfusions, Despite losing a little colour in my cheeks I feel pretty good again today and looking forward to getting off these machines and back into the playroom again.
I was worried you guys may tire of my cheeky smile so decided to pull you a funny face instead today.
Mummy and Nana Pam were so happy to see me back to my old cheerful self and spent much of the day in the play room.
November 7th 2005
After a great couple of days, I should have known that a nasty one was on it's way, today I have felt awful all-day and have thrown a few tears and tantrums. Doctors advised that my blood count has dropped to only 5.5 and that my Platelet's are also very very low. Over the next 24 hours I will need a blood transfusion and a Platelet Transfusion.
Poor Mummy and Nana Pam had a nightmare of a day with me but somehow managed to be very patient with me despite screaming and crying for much of the day.
Daddy arrived for the Nightshift and luckily for him I feel much calmer and relaxed now, however I still refuse to wear nappies and wake Daddy up every hour on the hour for the toilet. Between Toilet time and nurses giving medicines, temperature, blood pressure and my machine beeping, neither of us gets much sleep, but we have a few giggles throughout the night.
November 6th 2005
I am hooked up to Chemotherapy for a solid 24 hours, but not to happy about being confined to my bed so I got Nana Diane, Granddad Dave and Mummy to wheel all the equipment to the play room.
In the play room I discovered a musical instrument set where I could be heard throughout the entire ward banging away at cymbals etc. Had quite a good day today.
Daddy arrived for the nightshift and I kept him busy all-night asking him to take me to the toilet every hour, as I just don't do nappies!
Daddy has to wear rubber gloves when taking me which always makes me giggle a little because he looks so silly!
November 5th 2005
Today is the best I have felt in weeks, I have been jumping up and down on the bed, singing, dancing and playing all day long, My Daddy had a call from the hospital asking how I was feeling because they had just received my blood test results and they revealed I am Neutropenic which means my white blood cell count is very low. This means I should be quite weak at the moment and my immune system is very low so chances of catching any infections are very high.
The irony of it all is, I feel great!
I have to go back into hospital this evening for round 2 of my chemotherapy
November 4th 2005
I was allowed home on Thursday November 3rd for a few days, but have brought back with me enough medicine and syringes to keep a army medic busy on the battlefield and a special device which Mummy and Daddy attach to one of my many tubes and this allows food into my tummy very slowly for many hours. However this does restrict my movement a little at night which can be a little frustrating for a gal like me that likes a good fidget.
I had a very rough night at home, as I was suffering with a very sore tummy along with diarrhoea and sickness, which was a very messy night for Mummy, Daddy and Nana Pam.
The whole food through a tube thing is fine, but let me get my gnashes on a corn on a cob anytime!
It's Friday and I have been fed through a tube, had no sleep, really bad sickness and diarrhoea and on 5 different medicines several times a day but guess what?
Hopefully I will be a little better tonight, because rather than go dancing or to a outdoor bonfire display on Saturday night, I have opted to begin round 2 of my chemotherapy instead.
November 2nd 2005
It has been a rough few days for me and I have been quite poorly and very tired. As I have not been eating much, my Doctors have fitted a NG (nasal gastric) which runs from my nose to my tummy.
We had a nightmare fitting it as I wasn't to keen on the idea but I am slowly getting used to it.
Despite all this, I still have time to give you all a quick trademark smile of mine.
I am still in hospital at the moment but hoping to come back home very soon.
You may remember a few days ago I had 2 MIBG Scans, these confirm 99% that I have Neuroblastoma Stage 4, however they didn't reveal too much extra information as the Doctors advised the test will not show infant cancerous cells so unable to establish exactly how far it has spread. The Bone Scan came back clear which is a good sign but our consultant warned that the disease is in the Bone Marrow.
A huge thank-you to everyone who has signed my guestbook, I never realised how popular I am.
October 31st 2005
Mummy and Daddy here, I'm afraid Samantha has not been very good today, what little appetite she did have has now disappeared and she has been quite tired, we have called the hospital and she has to go back into hospital to have a NG (nasal gastric) tube in her nose. This will provide her with all the calories that she requires but she will have to keep this tube from her nose to her tummy for sometime and we will have to learn how to feed her via this method.
Louis dressed up in Halloween costume shouting arrggghhhhh at Trick Or Treaters when we opened the door but Samantha was to tired to join him and retired early, which was a shame as she was quite excited about Halloween.
We received an e-mail from the Benson family today and how their lovely daughter Katelyn is also fighting this nasty disease. If possible please send some messages of support for them too. http://www.katiebenson.tk/
October 30th 2005
I returned home from hospital late last night after having a blood transfusion, which should give me a little of my energy back again. I have little appetite at the moment and feel fine one minute and washed out the next, but it's good to be back home and to see my brother Louis again.
Michelle visited today and brought me some great gifts from all at Balfour Beatty where mummy works, I now have a Baby Annabel which cries real tears until I pick her up and give her a cuddle, I carry her everywhere I go. They also brought me a portable DVD player so I can watch my favourite DVD's when in hospital.
A huge thank-you to everyone at Balfour Beatty!
Although quite tired I have had a great day playing and being at home with family and friends.
October 29th 2005
My First session of Chemotherapy finished at 2am this morning. Daddy stopped with me last night and listens to his Ipod whilst watching me sleep, despite having a thousand songs on his player, he only seems to listen to Coldplay's Fix You or Athlete's Wires but anything is better than watching him dance to the Artic Monkeys.
I pretended to be asleep with daddy snoring when somebody opened the door thinking it would be Mummy, as we lay there snoring loudly, we heard a few giggles so opened our eyes to see my consultant and other Doctors looking at us laughing!
Doctors said this morning for a girl of my age my blood count should be around 11 or 12 but mine is currently only 7, if this count became as low as 5 it could be quite serious. So today I will be having a blood transfusion which should give me my energy back and put some colour back in my cheeky cheeks.
They will then hopefully let me come home for awhile until my next chemotherapy session. Mummy and Daddy will have to monitor my temperature very closely and if it reaches 38 degrees I will be straight back in hospital, as I have little immune system to fight infection.
Mummy and Nana Pam arrived to look after me today whilst Daddy get's some sleep.
October 28th 2005
You may remember that several weeks ago I had a central line fitted, I call this a WIGGLY.
This is a tube that is tunnelled under my skin on my chest and onto one of the large veins leading to my heart, this allows treatment such as chemotherapy and blood to be sampled. This Wiggly will remain inside of me for the many months of treatment. When this tube is not in use, they are put safely into a little bag around my neck and my doll has a some too which I look after.
Last night I had my first dose of chemotherapy through this Wiggly. The start of my treatment consists of intensive chemotherapy for 3 treatments in a row. These 3 treatments over several days is classed as one session.
I will be in hospital for this treatment and at the end of the 3 days I should be able to come home before repeating the process in another 10 days. This will go on for around 70 days.
If you think the thought of chemotherapy is scary you should see the bags that hang from the drip!!! as they are light sensitive they come out in black bags which makes them look more than a little sinister.
Although I still managed a cheeky grin and smile for everyone, I feel quite lethargic today and a little sleepy.
October 27th 2005
A very very tough day today for everyone as we were advised of my chances of surviving the treatment and this nasty disease, and I begin my chemotherapy treatment.
Enough to stop a girl smiling you would think, not this little warrior! I'm still smiling, after all I have to keep Mummy and Daddy smiling don't I.
October 26th 2005
I have been at the hospital for the last two days and been put to sleep twice by the yuckiest medicine a girl could ever taste and I hate it! Daddy says it reminds him of Mr T in the A-Team because I refuse to take it for ages have a little sip and wake up several hours later.
I have had 2 MIBG (meta-iodo-benzyl guanidine) scans. C is a substance that is taken up by neuroblastoma cells. It is given by injection. Attaching a small amount of radioactive iodine to the MIBG enables the tumours to be seen by a radiation scanner. This should allow the doctors to see exactly where the cancer is within my body.
Chemotherapy should start tomorrow.
October 22nd 2005
I have loads of energy today and been playing with my brother Louis and running around all over the place. However I am getting a reputation as a Diva, Mariah Carey style with my constant demands, especially between 1am and 5am where I can be heard asking for Milk, Juice, Tissue, Dressing Gown, Dolly, Blanket and Toilet to name but a few.
In the daytime I have been told I am like the character from Little Britain.
Mummy or Daddy take me upstairs to choose a toy to play with, and when I select one, they say are you sure you want this one, have this instead. "I Want that one" I scream.
Once the toy is downstairs, I say the immortal words "I don't like it, I want the other one!"
October 21st 2005
Went to QMC in Nottingham today, and my consultant advised that they are now 99% certain that I have Stage 4 Neuroblastoma. Although I look so well, it appears that under a microscope it is a different story which upset Mummy and Daddy.
However Mummy and Daddy were advised not to listen to statistics regarding treatment success rates as these only help when looking at the UK as a group by a bunch of doctors, but of little use to a individual child's case such as myself. Even if my chance was 1% I could be that 1% so again the stats mean nothing.
We all have a positive attitude and will fight this nasty disease and beat it together. I have even more tests next week, and my chemotherapy begins next Thursday.
Returned home from Hospital and my brother Louis has Chickenpox!!!
Daddy had to go all the way back to hospital to get some medicine to try and prevent me from getting the Chickenpox before I start my chemotherapy, as it would be dangerous when my immune system would be so low
October 1st-20th 2005
Over the first 3 weeks of October I have had so many tests such as X-Rays, CT scans, bone-marrow tests, blood tests, Urine tests and a A biopsy of the tumour was taken from my tummy but we always seem to be waiting for results of these tests.
The Doctors appear to be a little baffled by my problem, and need to determine if I have a Wilms Tumour or a Neuroblastoma both are Cancerous Tumours which would have started in my tummy and have attached to one of my Kidney's but the latter is much more serious as it means it has spread throughout my body.
They seem to be leaning towards a Wilms Tumour becuase I am so full of life and still running and jumping around, I even manage a song and a smile. Most children with Neuroblastoma can appear very weak.
Mummy and Daddy did some research and discovered that Statiscally in the UK, Treatment for Wilms Tumour carries a 95% success rate, however treatment for Neuroblastoma only has a 20 - 25% success rate so they are very very worried for me.
Although unsure which of these it is yet, it would appear certain that I will have to endure Chemotherapy for several weeks which will shrink the tumour in my tummy. This will be followed by a operation to remove the tumour and one of my Kidney's. Finally more chemotherapy to wipe out any other cancerous cells.
I seem to have lost my appetite for the last few weeks and the only thing that I seem to fancy eating is Fromage Frais Yoghurts during the day and Milk at night, Mummy and Daddy noticed that my belly has become quite swollen and bloated so taking me to see the doctors to see if I am poorly or not.
The Doctor was a little worried too and thought I should go to the Childrens hospital in Derby for tests to see what could be causing the problem. Mummy called Daddy at work and we went to the hospital where I had various tests and X-Rays.
The nice people at the hospital think I may have a type of tumour in my tummy which maybe making me poorly so are sending me to a bigger hospital called QMC in Nottingham where they will carry out tests.
As we are constantly referring to blood counts, I found a good website which explains everything about blood counts in basic terms: http://www.cancerhelp.org.uk/help/default.asp?page=314#rbc
What are normal blood counts?
Hopefully this will make things a little easier to understand when I am moaning about my platelets dropping to 10 etc.
Copyright ©2005 Neil Hughes