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.
Samantha is always in my thoughts. She is such an amazing and strong girl. I am constantly in awe of how she can smile and live and laugh despite all that she must go through. If only the world could learn from her; it would be a much better place.
Please take a moment to sign the petition below to the British Government for funding into Childhood Cancer, together we can make a difference.
A very special thank you to everyone that has sent tributes to Samantha, her guestbook is still getting messages from all over the world, which shows that Samantha's light is still shining bright.
April 25th 2008
A huge thank you to everyone who attended Samantha's funeral, it was a beautiful service for our princess. It would not be possible to thank everyone individually but to all who helped organise and make it so special and you know who you are, we cannot thank you enough.
Thanks to everyone who has made donations which will be passed on to Ward E38, Thomas Ball Fund, Post Pals, and Georgies Fund to help them make a difference with poorly children and this nasty disease Neuroblastoma.
Although Samantha is no longer with us, her light continues to shine and inspire across the world, the last 3 days has seen 5,000 people a day visit from Germany, Hong Kong and Korea to name but a few. So many people visited on Wednesday causing the site to crash!
Thanks to each and everyone of you for your love and support over the last two years, please forever keep Samantha in your hearts and may she continue to inspire us all.
April 16th 2008
March 18th 2003 - April 15th 2008
Our beautiful Princess Samantha passed away on Tuesday April 15th.
Samantha was a very special and very brave princess who touched the hearts of people in every corner of the world, and her light, strength and courage will shine forever.
We were honoured to have had her as part of our lives and so proud that she accomplished more in her short life by inspiring others than we could ever hope to achieve.
April 12th 2008
A huge thank-you to each and everyone of you that has been kind enough so send Samantha an e-mail, card, gift, filled out her guestbook or have simply sent a positive thought her way. The love and support she has received is appreciated more than you could ever know. It is incredibly moving to think that she has touched the hearts of people in every corner of the world.
Thanks so much to everyone at Post Pals, what they do is priceless and really makes a difference to people's lives. Each day when the post arrives, both Samantha and Louis are so happy to see they have mail and gifts. There have been several little cuddly toys sent which she insists sleep with her at all times.
A very special thank you to the Macmillan nurses who are simply fantastic at the moment and make it possible for Samantha to be cared for at home rather than at hospital, which means so much to her.
This is an impossibly difficult time at the moment and it seems a little inappropriate giving daily updates on her condition which I am sure you can all understand, and also very aware that any parent of a recently diagnosed child with Neuroblastoma may one day be reading this site to find out more information, the most important thing to remember is EVERY child is different.
April 6th 2008
I am afraid Samantha is very ill at the moment. Last Friday the full results of the Bone Marrow aspiration test were returned and they show that the cancer has spread very fast throughout her body and that further chemo or treatment is no longer an option for her.
This is the worst possible news, and Samantha condition has worsened at a rapid rate as this truly awful disease begins to take over her tiny body,
Samantha is now back home and on morphine, although not in pain she spends most of the day asleep and it's heartbreaking to see her in this way and looking so ill. In only a week she has gone from being the life and soul of the party to a very poorly girl with black eyes and various lumps and bumps beginning to show and has very little energy.
Despite spending most of the day asleep, and awaking very upset, every now and again she will return with a joke or a giggle, she really is an inspiration.
Regular visitors will know all about Sam's very special friend that we call her twin in Australia, called Kahlilla who was born the same day as Sam and was diagnosed with Neuroblastoma around the same time. In yet another tragic twist of fate she is also very poorly at the moment.
These two girls from opposite sides of the world have so much in common and are so brave, if you are reading this let them inspire you to help raise the profile of Neuroblastoma and work towards finding a cure. This disease destroys everything in it's path and these children fight without fear. Together we really can make a difference.
April 2nd 2008
I went to the hospital today to see my consultant and discuss the lump under my arm and my swollen belly. As feared it appears that this nasty cancer is immune to the Etoposide Chemo. It seems that the swelling is due to the disease in my liver and spleen which has caused them to become enlarged.
Early indications from the Bone Marrow Aspiration also show strong evidence of disease.
I have felt very lethargic for most of the day but true to form, my smile returned in the afternoon. The next stage of treatment will now be a combination of Temador (oral chemo) and Irinotecan (intravenously) starting on Friday and hope that it finally keeps this nasty disease at bay.
As I have tried pretty much every form of chemotherapy available, I am fast running out of options for treatment, so as always please keep your positive thoughts coming my way, because to be blunt with you all, I NEED THEM more than ever!
However I am not on my own battling this disease, there are many children out there just as brave as myself and most do not have websites, but please spare a thought for them too. I have recently heard about a very special little girl called Emily Atkins who is very ill at the moment and is so brave. I just want Emily and her family to know that we are all thinking of her and her family at this very difficult time.
April 1st 2008
The day after my party I had a call from the hospital who wanted to me to go for a Bone Marrow Aspiration, this test should show if the chemo is working against the cancer in my body. I had some magic medicine in my wigglies and woke up with a big plaster on my back and it was a little sore. We now have a very anxious wait for the results which can take around 2 weeks.
I am feeling great and full of life as always but I have now developed a large lump under my arm, and what can only be described as a pot belly which is very worrying as this was one of the first signs I had when originally diagnosed a few years ago. I hope to be going back to the hospital very soon to discuss these new symptoms with my consultant.
This is a very difficult time so please keep sending those magical positive thoughts as I need them more than ever.
March 23rd 2008
As promised click on the Video below for highlights of my special birthday party thanks to everyone at the Princess Fund.
Both Louis and I had a fantastic time.
I'm 5 now!
If the Video does not play, click here and download the FLASH Player.
March 18th 2008
Happy Birthday to me, Happy Birthday to me!
That's right I am 5 years old today, I have been so lucky to get cards, letters and gifts from all over the world and wanted to thank each and everyone of you but it would take forever to write everyone's name down, so I have made you all a little thank-you video.
If the Video does not play, click here and download the FLASH Player.
Can't wait for our Pink Limo ride to our special Pirates and Princess party this weekend, and will be sure to take plenty of picture for you all.
March 15th 2008
Wow! where does the time go? Sorry to neglect you all but I have been a very busy girl, and despite everything I have managed to squeeze in alot of fun, smiling and singing as well as the bad stuff.
I have been back on chemo for a week now and my blood counts have just started to drop again, I needed my first blood and platelet transfusion on Friday for the first time in over a week. As I am on treatment for 2 weeks before getting another break, I expect to be seeing hospital alot more over the next few weeks I'm sorry to say.
The Princess Fund have arranged for a limo to pick both Louis and I up for a special birthday party next week, so I have everything crossed that I will be ok for our special day..
I am 5 on the 18th March and Louis is 7 on the 21st March, so we are looking forward to a fantastic joint party.
March 5th 2008
Hello Everyone! You will all be pleased to hear that I have been feeling much better over the last few days and even managed a special guest appearance for a few hours at my school. I love school so much and playing with all my friends, so it was kinda cool to put on my uniform and hit the playground.
I have also been having lot's of fun with my friends Ebony and Maisey who came round my house to play, keep me entertained and ensure that I don't get bored. A huge thank you to everyone for keeping me smiling!
I have been to the hospital everyday for my special medicine to clear my line infection, the nice Doctors have said I will remain on the medication until Friday and if everything is ok, I will begin my next round of chemo, so until then this girl is having fun...fun...fun.
LITTLE PRINCESS FUND UPDATE
The Little Princess Fund and of course myself would like to thank the following people for their kind donations so far: Beavers in Heanor £205.20, Ma Hubbards in Underwood £317.50, The Workers at Skanska at Derby City Hospital £102.50, Derby Supporters Club Heanor Branch £353.00, Ray and Kirsty Randall from doing a car wash at their house £240.00, The New Inn Heanor £92.00, Kev and Dawn Hubbard from a Book Sale at their house £440.00, Hire Station £100.00, ICL Projects Ltd £200.00, a Very Special Thanks to all at Autobond Ltd for donating £1,000.00, The Doctors and Staff at The Park Surgery Heanor £200.00, and everyone else who has donated so far.
Thanks so much for each and everyone of you, for thinking of little old me, and treating me a real princess too!
February 28th 2008
Another bad week for me, I have been back in hospital after my recently re-fitted Hickman Line has become infected. My temperature has been very high and my eyes swelled up, making me look like a boxer after 12 rounds. Louis thought this funny! he always makes me smile with his crazy sense of humour.
I packed my bag and cuddled up to my favourite Dora and Eeyore cuddly toys, I get a little nervous and upset when Doctors ask me to do things as I am not to keen on being constantly poked and prodded but once I know them I'm quite accommodating.
Despite many visits to hospital this week, my arm hurting and a little trouble with my hearing, you may rest assured that I am still in good spirits.
February 24th 2008
Sorry for going quiet on you all, but it has been a very hard week. Last Monday I awoke to find my entire chest was black, and I was rushed to hospital. Luckily this was only because of my platelets being so low again.
We were worried that my bone marrow was not functioning anymore as I have had a blood and platelet transfusions every other day for sometime now, but my consultant advised us all not to jump to any conclusions and that this was to be expected with my current treatment.
My chest is still badly bruised even now, but the good news is that I have not had any bloods for a week, but I am due a blood test tomorrow morning to check my counts once again.
I am currently having a week off from chemo, but it will commence again on Saturday, everyday for 3 weeks. However rest assured that I remain in good spirits and still keep smiling and singing, in fact I have had my brother Louis in hysterics today singing my very own version of the Kaiser Chiefs "Angry Mob" and the Reverend and the Makers "He Said He Loved Me".
A special hello to my new friends in Hong Kong who have recently started following my journey and of course to each and everyone of you.
February 19th 2008
It was a very late night for me last night as I didn't get home from hospital until the early hours after my blood and platelet, transfusions but despite not making it home before midnight, you will be glad to know that I am still a princess.
I am feeling a little better today and have a little colour in my cheeks, I'm not sure if it's the blood transfusion or the fact I'm a little embarrassed about the huge amount of attention on little old me. My story was featured in a few newspapers and it seems I have many more people now sending me positive thoughts. Which is really nice or as my brother Louis would say "COOL DUDE"
My site has had over 2000 visitors today, and it looks like I better get someone to contact our web host and warn them we are expecting lot's of visitors.
There have been many thousands of people who have followed my journey from the very beginning and I class you all as my friends, if you are new to my online diary, remember you can catch up on how my life began by clicking the link at the very bottom of this page. If you are new to my site, please remember to put me in your favourites and continue to follow my story and maybe send some positive vibes my way.
Thanks so much for everyone that has taken the time to write a comment in my guestbook and a big belated thank you to Kyran, Courtney and Tracey for my beautiful Princess balloon.
February 18th 2008
Not the best of weeks for this little girl I'm afraid. I went to the hospital on Friday and had my Hickman Line fitted again or "Wigglies" as I call them. I awoke feeling very tired and sore yet took explained to everyone what happened and how I am now going to look after them again. I also had 2 platelets and one blood transfusion, or as I like to say 2 orange bags and 1 red bag.
On Sunday I had to return to hospital again for an Orange bag (platelets) yet again.
I have spent many long days and in hospital but I have been really good and not complained or say that I'm bored like my brother would, I just get on with it. I think my favourite nurse Becky deserves a mention too, she is really cool and always looks after me.
Everyone has been very concerned at me needing transfusions every other day but my consultant thinks this is to be expected as the chemo fights this nasty disease.
Thanks so much for every positive thought, e-mail, card and so much more that has been sent my way, please continue to do so. I appreciate your help more than you could ever know.
The only reason I am still here and you are reading my diary is because of the many people who give blood to help others like little old me.
You could save a life, it won't cost you a penny, and you even get a free biscuit thrown in too!
I don't know of a better deal than that, do you?
February 12th 2008
I am afraid that I have not been feeling so good since my last update. My blood and platelet counts continue to tumble and transfusions once again become an all too regular occurrence. Every two days a nurse comes to my house and does a finger prick test to see just what my counts are and yesterday despite recent transfusions my HB count was only 6 and my platelet count was only 8.
What are normal blood counts?
I have spent the night in hospital as the blood transfusion would not be completed until after 2am, so hopefully will be back home by the time you read this.
Despite my low blood counts, having very little sleep, pain in my arms, bruises all over my body, black eyes, lack of energy, constant needles and yucky medicine, this little girl still manages the biggest smile you have ever seen, but also still knows how to deliver a good joke and a big girly giggle.
A very special thank you to Becki, Bailey, Gavin, morgan.. and all the kind people in this world who donated towards the "Baileys Brave Box" charity. Thank you so much for giving Louis and I a wonderful surprise. The postman brought me a pink Nintendo DS which I love so much, I'm hooked on all the Brain Training games, maybe that's why I'm so clever for a girl who is not yet 5.
What made me really happy though was seeing Louis get a wonderful surprise too, he was so excited and happy to have his first mobile phone, he thinks he is the "coolest dude" in school now, and loves the fact he can send text messages.
Thanks so much for every e-mail, positive thought, card, postcard, gift that has come my way, I am so grateful for your love and support, you make me feel a very lucky girl and that is priceless,
I have so many thank-you's today, I feel like I am accepting an award but I also want to give a very special mention to the Mums of Heanor and Corfield School who have created "The Little Princess Fund" which they have created for little old me, and to make sure I have lot's of good times, If anyone would like details of this fund, please contact email@example.com
February 4th 2008
I have not been getting much sleep at all due to my poorly arm and legs, I then woke up to see I had a little black eye which is caused by this disease. If that's not enough I have to endure some special medicine to try and make me a little better, it may be special and I am allowed to mix it with Orange juice, but it's still yucky.
What can a girl do eh? well despite feeling ill, tired and have the odd cry, I decided to pop on my best Princess Dress and be a proper girlie girl. A huge thank you to Sue, Hayley, Steve and Amy for my Narnia Snow Queen Outfit. Do you like it?
As you can see, despite everything I still know how to dress up and flash my trademark smile.
February 1st 2008
This week I have had several trips to the hospital which involved having a blood and platelet transfusion, which means I have a few marks on my arm and feel a little like a pin cushion. This was a little worrying as the only time I have had transfusions is because of the damage caused by treatment such as chemo and I haven't had any!
I have met with my consultant who confirmed the bad news, it appears my bone marrow has large amounts of Neuroblastoma cells, this means I am unable to have Stem Cell harvest as they are so full of disease. I am also unable to have low levels of MIBG treatment as the risk of damage to my bone marrow is too great.
I have now begun etoposide chemotherapy which we hope will reduce the Neuroblastoma cells from my bone marrow, it may also mean that I lose my trademark curls again.
Just in case you wondering though, I was able to get several stickers from my hospital visit and even an Ice Cream too!
So many of you have followed my story from the beginning and I thank each and everyone of you for your love and positive thoughts from every corner of the world. Dare I be a little bit cheeky and ask for your help, positive thoughts and support once again?
January 28th 2008
I am still smiling but find myself looking very pale, whilst feeling very tired and teary, the hospital said that my blood counts are dropping slowly and this would explain much of this, but it also reminds us that this nasty disease is back with a vengeance.
I am going back to the QMC for a blood transfusion on Monday, which will hopefully put back a little colour in my cheeks and give me a little much needed energy.
On a happier note, have a look at my photo below where I am wearing nail varnish in my favourite colour and also hugging a Koala bear that was sent to me by my special friend in Australia Kahlilla. THANK YOU Sooooooooo much, I take I everywhere with me
As soon as I receive the full scan results, and from the Bone Marrow tests, I will have a much better idea of the treatment that I can have, so won't go into too much detail just yet, but will keep you all informed as soon as I hear anything.
January 26th 2008
Quote of the day
"I went to hospital with a poorly leg and a poorly arm, but came out with a poorly back too! you should see what they have done to me"
Before I can have Stem Cell Rescue at Sheffield, I went to my local hospital for a Bone Marrow Aspiration and woke up with two massive holes in my back which were quite sore. I was going to show you a picture but please take my word for it when I say that is not a pretty sight at all, in fact very gruesome. I have two very big plasters on them, so hopefully it will get better soon.
January 23rd 2008
I have just returned from the big smoke, or should I say London! Yes that's right this girl has been showing off her big city ways and went on a big train to the UCLH hospital.
The Doctors were really nice to me but to be honest, hospitals make me really nervous, so I was very quiet and tried to avoid eye contact with them. I was so overwhelmed with the whole experience that I fell asleep whilst they were talking.
I am hoping to have MIBG treatment there but they would prefer that I have Stem Cell Rescue again in Sheffield before I begin the treatment, so it sounds like I am going to be a busy travelling around.
January 18th 2008
I went to the hospital on Thursday and Friday for my MIBG Scan and was so brave. Usually they put children my age to sleep for this scan but as I'm such a good girl, I stayed really still and avoided the nasty medicine that puts you to sleep.
When I arrived at the hospital I go into the zone and do not speak to anyone and do not look at anyone, I suppose you could say it's how I deal with it all. As soon as the poking, prodding, and scans are over, I immediately become my old happy self again and can be seen running, singing and waving at everybody.
You will also be glad to hear that not only did I get my sticker this time, but a bravery certificate too. Eeyore was with me every step of the way also, so managed to get him one as well.
I hit the playroom whenever I had a spare moment, and even made a mask which ended up looking quite scary.
I have yet to receive the scan results but my consultant feels early indication does show there maybe something going on in my legs, next week I am going all the way to London for the day to see a nice Doctor to discuss MIBG treatment, so should have more news for you then.
I will update you all when I have more information.
January 11th 2008
I went to the QMC today for a Bone Scan, which will show if the cancer is present in any of my bones. I had to have a cannula fitted and don't mind telling you that I shed a few tears. The nurses then injected a substance into my bloodstream via the cannula and I had to wait a few hours before I went for the scan. As I promised to be a very good girl and stay still I did not need to be put to sleep this time.
As promised I stayed really still whilst the doctor performed the scan, and he said I was a very good girl, but he never gave me a sticker! I will try and get one when I return. No one cheats Sammy out of a brave girl sticker.
I was really quiet this morning and maybe a little nervous, but once it was all over I was back to my old self again, I do find myself getting quite sleepy though and my appetite seems to have disappeared which is a little worrying.
On Thursday and Friday this week I am returning to the hospital for an MIBG Scan, once again I will have one of those nasty cannula's fitted whilst some radioactive substance is put into my bloodstream, this scan should cell exactly where I have cancer cells in my body. Once we have the results of these tests we will know what I am dealing with.
We are currently looking into the possibility of MIBG treatment, so will keep you posted,
January 10th 2008
Thanks so much for all the lovely e-mails and for the entries to my guestbook, despite everything that has been thrown at me, you will all be very pleased to hear that I have really enjoyed today.
It is important to remember that I am not on my own with this nasty disease. Many of you know a little girl in Australia called Kahlilla she was born the same day and year as me whilst also being diagnosed with Neoroblastoma around the same time. I am afraid to say now we have both relapsed and she has sent me a wristband saying "Fighting NB with Kahilla" if you look at the pic in the centre below, you can see me wearing it.
So if your reading this Kahilla, we certainly are fighting together. Please drop by and visit the girl I call my twin too.
As for myself, I am on constant pain relief for my bad arm, so as long I take my medicine it doesn't hurt too much. I do find myself getting tired quite quickly and have to go to bed much earlier and even a lie down in the afternoon sometimes.
Despite all that I've had a really good day today and as you can see by the pictures above, I am living up to my little princess tag.
I am going for a bone scan tomorrow, so will let you all know how I get on.
January 9th 2008
Thanks so much to each and everyone of you that has sent messages of support via e-mail, my guestbook and the Neuroblastoma digest. Your help, best wishes and advice is appreciated more than you can ever know.
I was wondering if anyone out there knows anyone or has more information about the RH1 trial at the Royal Manchester Children's Hospital.
You can read more about it by clicking here
Please keep your positive thoughts and helpful information coming my way.
January 8th 2008
Over the last two months I have been having pain in my left arm, this has gradually got much worse and was taken to hospital for an MRI Scan to establish what was causing the pain. At night, the pain has become so bad that I am now on morphine, I have been a little quiet recently because everyone has been very worried that this nasty disease may have returned.
I am very sad to say the consultant advised today that the results of the scan reveal a large black mass on my left shoulder which suggests that Neuroblastoma has returned. I will return to hospital next week for another scan which will show just how far the disease has spread.
My concerns are the hospital mentioned he didn't think anyone was doing MIBG treatment anymore as it didn't work and he was considering oral chemo as maintenance only. We are sure Jack Brown recently had MIBG at Great Ormond St and will be contacting his family, also Kahlilla in Australia is about to have this on the 10th.
Any help/advice on other options that I may be able to present the consultant would be much appreciated as I'm not the kind of girl to take NO for an answer.
All hands on deck people, this little princess needs your help again.
December 27th 2007
HAPPY CHRISTMAS EVERYONE!
Santa was kind enough to bring me everything that I want and so much more! We had a fantastic time and we still are. Have a look at the picture above at Nana Diane's house with my brother Louis and cousins Dylan and Dean. I had my hands full keeping 3 little boys under control but as any modern girl will you, boys are a piece of cake to control.
The other photo is of me and Louis playing with our new scooters we got for Christmas.
December 23rd 2007
The pain in my arm is now getting much worse at night but I am still so excited that Santa will be paying me a visit in two days time, I have been a very good girl and think you will agree with me a very brave girl too, so it's going to be so cool.
Even though I have a bad arm, this girl still knows how to belt out a good tune, if you don't believe me, just click below.
If the Video does not play, click here and download the FLASH Player.
December 18th 2007
I have had a fantastic day out in Birmingham at the NEC for "The Magic of Christmas"
We entered the magical grounds by knocking on a huge talking door and we then had to pass through Santa's special detector which turned Red if you have been naughty during the year or Green if you have been good. Guess what? both me and Louis turned green, so hoping Santa will be visiting us with lot's of toys.
December 16th 2007
A few weeks ago, I had an X-Ray on my arm which has been causing me a little pain recently, and although it came back clear, it appears I will be going to hospital for a scan in the new year to get it checked out.
Everyone is very nervous and worried, but I am concentrating on having the best Christmas ever and will deal with anything thrown my way in the new year.
Sometimes my arm is fine with no problems at all, the pain seems to come and go, but the other night I awoke crying because it was hurting me.
I will keep you posted, on how I am getting on, so please remember to drop by and keep those positive and loving thoughts coming my way.
December 12th 2007
For two days I have performed to parents and children in the Corfield School Christmas Nativity Play which is called "Wiggly Nativity"
It was a huge day in many ways, I have seen my big brother Louis perform in the past but often wondered if I would ever be well enough to be in a school play myself, I am sure I spotted a few tears of joy out in the audience, as I belted out the usual Christmas classics.
It was also fantastic to share the stage with Louis who was starring as the front end of the Donkey, which I feel was rather fortunate, don't you?
December 10th 2007
A huge thank you from both Louis and I to everyone at the Joshua Foundation for a fantastic time, when they sent a limousine to collect us and have breakfast with Santa.
14 limousines rolled up outside Colwick Hall Hotel in Nottingham carrying more than 20 families from far and wide.
There were smiles all around and it was fantastic to see so many brave children having the time of their life.
Everyone at the foundation have created something very special and I am sure Joshua Cornelius is looking down feeling very proud.
December 9th 2007
I am very sorry to say that Katie Benson lost her battle against Neuroblastoma on December 6th 2007.
December 8th 2007
Wow! has a month gone by already? I must apologise but once again I have been so busy having fun with a capital F.
I know many of you only visit only this page for updates, but I have now taken artistic control of the Samantha Loves page, and Louis has been working on his page adding his favourite sites, so don't forget to check them out too.
Although my arm has been aching now and again, I am still feeling great and if you have any doubts, check out Louis and I in action below.
I would love to talk more but I have to catch a Limousine to see Santa now, and believe it or not I'm not joking!, I promise to tell you more in the next few days.
If the Video does not play, click here and download the FLASH Player.
November 6th 2007
You will be pleased to hear that both scans came back clear today, I was a really big girl and although my eyes were a little watery when they put something in my hand, I never cried.
The Doctors were really pleased with how well I am doing and some of the nurses said I look more cute than ever!
I have had an achy arm the last few days though, and the Doctors said they would want to see me in two weeks if it is still the same. so please keep thinking of me.
As for little old me, I'm feeling great, people tell me I look great and I'm having so much fun with boundless amounts of energy. I'm loving school and have so many friends, I'm so happy.
Today has been a huge day, and I thank each and everyone of you that has dropped by to see how I am doing and sent me positive thoughts from all over the world. Over 328,000 people have visited this site, a massive thank-you to you all.
October 30th 2007
I have just discovered that brave soldier Jesson Wragg lost his battle against Neuroblastoma yesterday.
Jesson was an amazing brave little boy that will never be forgotten and I urge everyone who follows my story to spare a thought for his family at this very sad time.
The family have posted on his website
Jesson passed away 2.25pm 29th Oct, at home with his family all around him.
We love you sweetheart xxx
I will update when I can find the strength.
My heart is breaking.
October 24th 2007
Guess what guys?, I'm a School Councillor, and have a badge that I have to wear all the time, I will be going to meetings and have my photo on the wall with the other councillors. I volunteered and when the teacher said it meant I would have to stand up and speak I said no problem.
My teacher said that I love being the centre of attention, and that when she met me at play school I wouldn't speak to her and she thought that I would be a really quiet one, but I'm obviously growing in confidence now. Oh and I'm a proper girly girl.
I have also enjoyed our school Harvest Festival, I enjoyed singing and performing the actions with the rest of Reception class. also a song about planting and harvesting, it was said that looked so cute with my hair in bunches,
Louis sang with his class and played a tambourine and recorder type sound for sound effects in the story, it was fantastic to be at school. and it's amazing just how far that I have come.
On November 6th I am off to hospital for a scan to see if this nasty disease hasn't returned and a heart scan, so once again it's a very tense time, so please spare a thought for me and send some of those powerful positive vibes my way.
October 14th 2007
Not too much to tell you but they say a picture tells a thousand words so let me know what you think of this one.
You guessed right this girl is very happy!
October 10th 2007
Hello all! I am having so much fun at the moment, going to school and playing with my friends. Last Night me and my girly friends enjoyed dressing up and looked quite cute even if I say so myself.
Despite the postal strike at the minute, I have received lots of nice things via Post Pals, I would especially like to thank the lovely lady who sent me £2.00 to buy some Cranberry Juice and some chocolate buttons after seeing that I like them.
My hair is really growing fast now and my infamous curls are returning, so expect me to be experimenting with many different styles in the very near future.
Not much to report except I have boundless amounts of energy, growing in confidence everyday, quite bossy (I am a girl) and loving every second of every day.
October 5th 2007
I have been a very busy girl the last few weeks, and recently this Princess went to the ball, well not technically the ball but The Disney on Ice show in my best Princess dress. My best friend Ebony and her mum took me and we had a fantastic time.
I am loving school at the moment too, there was one day that I was feeling quite poorly all night and Mummy said I should stay off school for the day, but I said NO WAY!, and off I went to see my new friends, after all laughter is the best medicine, isn't it?
It's Autumn here in the UK, or as my American friends would say "The Fall", which means only one thing to Louis and Me.....CONKERS!
That's right we both had so much fun, finding conkers (horse chestnuts) on the ground, I am quite good now at standing on the big spiky shells and then carefully removing the conkers, we went home with a massive bag to share with our friends.
13th September 2007
There have been a few requests for a picture of me on my first day at school. Well, as we have been friends for a few years now, I figure it's the very least I could do, especially as you have played such a huge part in my life.
How grown up do I look eh?
11th September 2007
My first day at school today!
Only a few months ago today seemed a lifetime away and such a huge milestone to aim for, but this morning I put on a nice pretty dress and went to school with my brother Louis.
I wasn't scared or nervous, I enjoyed it so much and get a feeling I will make some very special friends.
Thanks so much for you positive thoughts and for thinking of little old me, I hope you will continue to follow my journey on this wonderful journey called life.
A huge special thank you to ALL STAFF at Data Systems and Solutions in Derby who raised a massive £1,592.50 for our friends at Georgie's Fund.
10th September 2007
Supporters of the Thomas Ball Children's Cancer Fund, adopted a grand total of 212 ducks. Once we know how many of these kind people made donations to the charity over and above the £2 adoption fee, we will let you know the total.
All money donated to The Thomas Ball Children's Cancer Fund is used to benefit children in the UK who are diagnosed with cancer and leukaemia.
The trustees would like to thank you all for your support.
Here are winning duck numbers:
The remaining 27 prize winners are:
6th September 2007
It is with great sadness to learn that Jane Tomlinson has lost her battle against breast cancer, but she proved that anything is possible with her achievements and fundraising.
Despite everything she raised over £1 million, performed a 4,200-mile charity bike ride across America, ran the New York Marathon and even carried the Olympic Torch.
A very very special lady who will always be An inspiration to us all.
5th September 2007
Yet again I must thank each and everyone of you for thinking of me and sending me those magical positive thoughts from all over the world. You will all be pleased to hear that my Ultra Sound Scan yesterday was clear. No more scans until November which makes this little girl very happy indeed,
I have another massive step to prepare for now and that's my first day at big school, I am really excited about it and will also have my big brother Louis to look out for me.
I will let you know how I get on.
1st September 2007
I am feeling fantastic and enjoying every moment of this wonderful life, but never take anything for granted and still have a long way to go on my journey. I am going to the hospital on September 4th for a scan and to check this nasty disease hasn't come back again.
Once again I find myself asking you all to spare a little thought for me, but I know I don't need to, we have quite a special bond now after 2 years together, don't you think?
31st August 2007
12 months ago I was having my stem cells returned back in my tiny body and had a really tough time, which ended up with me being very poorly and struggled with V.O.D (Veno Occlusive Disease). Despite all he odds, and due to all the love and positive thoughts sent from around the world from you all, I am here with the biggest smile on my face. So thank you so much, for everything to each and every one of you that has ever read my site, sent an e-mail, signed my guestbook or simply sent a positive thought my way.
Another Thank you to everyone at Clic Sargent who sent me on a trip to the seaside last week, and as you can see by the pictures above, we had a great time.
19th August 2007
Guess Who Has Been Having Fun?
It may be the wettest and some say most miserable summer in many years here in the UK but you will be pleased to hear that we have been making the most of our summer and having a fantastic time. The only reason for being no update is because we have been out and about having fun.
A huge thank you the Thomas Ball charity for letting Louis and I stay at Tom's Retreat in Hampshire, we had so much fun as usual and have so much to thank them for, after sending me on holiday for the second time this year. Please drop by their site and say hello.
They have put a huge smile on my face this year with a holiday to Euro Disney and Hampshire, so please drop by and offer your support too.
On Sunday 2nd September, 165,000 rubber ducks will be released into the River Thames near Hampton Court Palace.
The owner of the first duck to cross the finish line will win a massive £10,000, with other superb prizes for the next 30 ducks to finish the race.
Ducks can be purchased for a minimum donation of £2, this will be donated to The Thomas Ball Children's Cancer Fund.
To adopt a duck and have the chance of winning these fantastic prizes, please visit this link.
15th July 2007
I am afraid that I haven't been able to get the old web address of www.samanthahughes.info address transferred across to my new web host yet, so please tell your friends that the only way to see my site at the moment is here at www.samanthahughes.co.uk
I am very sorry that many of you have been worried about me, but rest assured I have been busy having fun with my brother Louis. Especially last week when we attended a mini music festival, it was so much fun.
You have all been so good to me, so I thought I would treat you all to a little video of us both, or as they would say on the TV, our best bits.
5th July 2007
I don't know how you guys do it but please don't ever stop! I am sure that yet again the positive thoughts and wonderful messages I have received over the last few days and performed yet another little miracle.
You will be pleased to hear that the Ultra Sound scan showed that the area of concern was only my bowel and stomach which was very close together and nothing of any concern.
So I should be ok, until my next scan in September, I take nothing for granted but simply enjoying every second of my life, and really excited about starting big school in September, I have my uniform and everything.
2nd July 2007
The Doctor called today with the results of the scan. On a positive side the scan results look fairly positive as the bone marrow looks clear however there is an area which they are a little concerned with and have asked me to go back to hospital Tuesday morning for an ultra sound scan on my belly.
I am sure that I do not need to ask you but please, please send all the positive thoughts that you can my way, as everyone is a very nervous what they may find.
Hopefully it is scar tissue from the operation, but this really is a huge HOPEFULLY, so please think of me tomorrow.
The power of your positive thoughts has helped me once or twice in the past, so please don't think I'm cheeky by asking again but remember I did say please.
30th June 2007
I had a really good day today and enjoyed entertaining everyone, first I was a tap dancer, making clicking noises with my tongue, then a princess, a tiger, and Casper.
For the main event, I then put on a ninja turtles shell and pretended she was a turtle coming up for air in the sea, like the one I had seen in Zane, everyone had to click the camera like they did on the boat as I came up for air! My energy is amazing at the moment, maybe one fine day, I will be on the stage!!
I have been to the big school for a look around and even had lunch and sat with my friends, I saw Louis in the dining hall and waved to him, so I think I'm going to be fine in September. My school uniform has now been ordered too, so it's getting quite exciting being me at the moment.
I am just waiting for this constant rain to stop so I can get back on my trampoline again.
27th June 2007
I had my scan on June 25th as planned, but afraid that we now have a very anxious wait for the results, as soon as I hear anything, I will put a message on here so please keep those positive thoughts coming my way.
The doctors had to put me to sleep to take photo's of my belly, but I didn't wake up until hours afterwards, even when I did wake I was very wobbly and couldn't stand properly, but me being a feisty gal, I made it home and still got up in time for pre-school.
It won't be long now until I start big school, I'm really excited about it and I will be able to keep an eye on my big brother Louis.
19th June 2007
I'm back home again, after a fantastic 2 week break in sunny Greece, I was a very good girl and made sure I had plenty of sun cream on so I didn't get sunburnt. We had so much fun, especially because Aunty Lynsey came with little Dylan and Dean as we always get up to mischief together.
There were a more than a few occasions when we has everyone laughing, here are few examples,
Me - I spy with my little eye something beginning with C but it might not be.
ok you know colours lets play with colours
Me - I spy with my little eye something with all the colours of the world (it was a poster so I was probably right!)
On a coach trip
Me - I am driving the bus
Dylan - are you ?
Me - not really I am pretending - are you behaving back there or I will put you off the bus!
Laughter all round the bus!
I have also been told that I have developed a very cheeky little laugh since returning from my holiday, the more it's pointed out the more I use it, but it makes everyone smile so it's all good.
12th June 2007
Please don't worry about me going quiet on you for a few weeks, but I have been on a big aeroplane again, this time to see my friends in sunny Greece on my European tour as I like to call it.
There are so many of us, it's like our own holiday village, there are lot's of children to play with and I'm enjoying swimming in the sun, it doesn't get much better than this does it?
I will let you know more stories from my travels in the next few days, and maybe even a few pics to show you my tan.
You will be happy to hear that I have now completed my course of Retonic Acid, and been told I have a scan on June 25th which may show if this nasty disease and gone from my body or not. I am really enjoying myself at the moment and enjoying life, so hope you will join me in hoping for some good news after the scan. We have all come along way in the last few years, and I want to thank you for following my story and for bringing a smile to my face, even when I didn't feel like it.
Once again the next few weeks are critical to me, so please keep sending those positive thoughts,
7th June 2007
If you have a spare few moments, please drop by and send some love, support and positive thoughts to Jesson and his family by clicking on the link below. He is very poorly at the moment so please visit his site.
27th May 2007
A few more Disney pics for you.
21st May 2007
You will pleased to hear that Euro Disney was fantastic and both me and Louis had so much fun.
My favourite ride just had to be "It's a Small World", for those of you that have been before you will need no introduction to the ride with the incredibly infectious song that plays again and again throughout the duration of the trip around the world with Disney characters.
One thing I will say is that, 6ft Disney Characters may seem a little daft to you big adults, but to little me, they look bloody scary!!! At first I was a little nervous, shy and damn right scared of them but I soon warmed to them all, and by the end of my trip I was even enjoying breakfast with my favourite characters. They even signed my special autograph book.
Louis was really brave and went on all the big scary rides that he could and loved every minute of it too, however there was one ride called "Honey I Shrunk The Audience", it began in the dark and a GIANT and I mean GIANT cat ran out of the screen towards both of us, we were both was so scared we screamed really loud and got a little upset so we had to leave quick. I can see the funny side now struggling in the dark to get out of there but at the time I was terrified, as was Louis.
Louis loved the Star Wars ride, and even returned with his very own Light Sabre, I don't want to bore you all with all the details as it really was out of this world and we could both talk for hours on our favourite bits but they said a picture tells a thousand words so here's a few thousand for you.
Once again thank you to the Thomas Ball Charity for making my dream come true, and also thank-you to my special friend in Nottingham for helping turning my dream into a reality. Also a huge thank-you to Mummy, Nana Pam, and Louis for being great travel companions.
My Battle Against Neuroblastoma Began in September 2005,
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