Since joining Post Pals in 2008, Rhianna has had her diagnosis chaged from Diamond Blackfan Anemia to Aplastic Anemia and Polyarteritis Nodosa. She has recently had a bone marrow transplant.

Story written 2008

Rhianna was diagnosed with Diamond Blackfan Anemia in December 2007. Rhianna had been unwell for several months previously, but no one knew why and put it down to a viral infection.

Rhianna was taken seriously ill in December 2007 and after a blood test which was taken on the afternoon of the 6^th of December 2007 we received a phone call from the GP asking us to take her straight to the local children’s ward as her HB was only 4.3 (normal is above 13).

We stayed in the hospital for 4 nights before being transferred to a specialist children’s hospital where Rhianna had numerous tests done for bloods before having a bone marrow biopsy and a blood transfusion.

Rhianna started steroid treatment in January 2008 and had fortnightly visits to the hospital. As they were reducing the doses her HB kept falling so it was decided that Rhianna would have regular blood transfusions and see how things go. She is currently going every 3 weeks.

Update 5th May 2010

We are very sad to say that Rhianna passed away today.

Update 3rd May 2010

I’m still in hospital with Rhianna. They’ve put her back on antibiotics and increased steroids. She is still very poorly but has managed to sing and jig about for few minutes to her iPod.

Hopefully we’ll be in theatre on Thursday, unless Professor changes his mind again!!

Update 26th April 2010

We are still in Sheffield and will be for the next 10-14 days at least as Rhianna is still being treated for Adenovirus, Pneumocytis, Candida and Aspergillus. She is now on complete gut rest and is starting back on TPN! She had a nasty 2+ hour long nose bleed on Saturday and is very down mood again, although still not complaining. She is going to have a 2 unit blood transfusion tonight which will be the first one since having had the transplant.

A huge thank you to everyone who has sent Rhianna e-mails and cards, it’s so lovely that people can take the time to do this – it really does put a smile on a child’s face.

Update 22nd April 2010

Rhianna is still in hospital and is a little bit better but still has a long way to go. She is being treated for Aspergillus in her skin, Candida in her Gastro/ Digestive tract, and if that isn’t enough, on Monday we were told that they think she has Pneumocytitis in her lungs. They wanted to do Bronchoscopy on Monday but it was too high a risk and the anaesthetist refused as said she would have ended up in ICU on a ventilator.

So things very much up and down and we feel like we are on a roller coaster. On a plus the transplant has worked!!

Despite all this Rhianna continues to smile (though not as much) and not moan.

Update 17th April 2010

Rhianna is still very poorly in Sheffield on M3 and we’re unsure when we will be able to bring her home. After the skin biopsy she had last week she got steadily more unwell, her heart rate has increased and her Sats have decreased and she is requiring lots of oxygen to make her comfortable. They have found Aspergillus on her biopsy and think that she may have this on her lungs but are unsure but treating it anyway. It is very hard to treat and sadly can be fatal so we are hoping that she will continue to fight it. All we can do is sit back and wait and provide continued love and support.

Please can you update Rhianna’s page for us to say a huge thanks to everyone who has taken the time to send us all post and some lovely gifts. I will continue to keep you  updated over next few days.

Update 19th March 2010

Rhianna is doing really well after her BMT. Although she is still very tired and is still not able to do a lot or go out in crowds. Sheffield are really pleased with her, the cells are all donor cells and for the first time since Dec 07 she has not needed any transfusions!!

She is really grateful for all the lovely cards and gifts she has received and we are slowly going through all of them and will be sending thank you cards out, although it will be a lengthy job!!

We are so sorry to hear of the sad losses of Sophie, Madison and Holly.

Update 13th January 2010

Just to let you know that all is going to plan with Rhianna.

Thanks for the cards and for the chocolates and updating this wonderful site.

Update 28th December 2009

I would just like to say a big thanks to everyone that sent Rhianna and John cards and presents, its very kind of you all.

Rhianna keeps going to hospital as her platelets are dropping quickly. She goes in on the 5th January for pre conditioning prior to BMT on 15th January at Sheffield Children’s Hospital.

Thanks again for all your support.

Update 3rd November 2009

Rhianna is going to have a Bone Marrow Transplant at Sheffield Children’s Hospital in January. Things are pretty hectic here as we are backwards and forwards to the hospital as her HB and Platelets keep dropping. She has also got a fractured right ankle (which local hospital missed and told her to walk on as nothing was wrong) and is in pink pot at the moment and struggling to do anything as she has problems with her left ankle too! So, good old Sheffield are sorting that out for her too. Unfortunately it is a 4 hour round trip just for a quick appointment though! She has good and bad days but never complains about all that is happening to her, she is a true inspiration to us all.

Rhianna really enjoys receiving post and is just in the process of getting together some gifts to send to other Pals.

Update 26th August 2009

Rhianna’s diagnosis has changed from Diamond Blackfan Anemia to Aplastic Anemia and Polyarteritis Nodosa, as this is what she has now been confirmed as having.

Rhianna has continued to have monthly blood transfusions and recently platelets as well, due to low hb and platelets dropping to silly numbers like 14 and 8! Sheffield asked Newcastle to have a look at Rhianna and see if they could offer any answers, as Rhianna did not respond to the Chemo and is still requiring transfusions, and also because of platelets that were ok at the beginning of July but suddenly dropped towards the end of July.

We are currently anxiously awaiting the results from Newcastle which we should receive by the end of this week and with them will hopefully be a plan of action. They have said that she MAY need a Bone Marrow Transplant to help her, so at present we are in limbo land and just trying to function as best we can as a family.

The summer holidays have been very hard for Rhianna as she has not been able to do a lot with her friends (that should be the one friend that has bothered). It is heartbreaking to see her so down as she cannot walk far and refuses to go in a wheelchair in case her school friends see her. She cannot go swimming because of the risk of infections and everything else costs a fortune.

On a positive note, she says a BIG THANKYOU to you for the lovely cushion that you sent her, and to everyone who has taken the time to send her cards and letters, especially the children in America. Rhianna is going to write to everyone who has included their address but it may take some time. Also, she has been given a beautiful yorkie puppy that is now 17 days old and has his eyes open. He is called Sonny and is her motivation at the moment.

Thanks for all the hard work that you do as you really do make a difference to Rhianna.

Update 28th February 2009

Thank you for all the cards and letters Rhianna has received this month. Thanks to Post Pals for the gifts we have all received from you too.

Rhianna is currently undergoing monthly blood transfusions and chemotherapy. Although she is still smiling and laughing it really seems to be taking it out of her energy levels and she is not bouncing back as quick after her transfusions.

If anyone else knows of anyone Rhianna’s age with Polyarteritis Nodosa could they please contact us.

Update 13th January 2009

Rhianna now has a second health problem. She has Polyarteritis Nodosa alongside the Diamond Blackfan Anemia and started Chemotherapy yesterday.

She would like to say a huge thanks to everyone who sends her post and will reply to everyone who has put their address on.

Nicole sadly passed away on the 16th of May 2010 from another brain haemorrhage.

Scans only 2 weeks before showed she was still in remission from her cancer.

Story updated by Nicole, January 2008

Nicole was diagnosed with a rare type of cancer on the 8th of August in 2000, the day after she’d had an operation to remove a tumour on her spine. She was 11 years old. She had been having pain in her arm after banging it while going down a log flume in February 2000.

After several trips to various doctors, she was sent to a physiotherapist who thought it might be a problem with her neck. The physiotherapist asked for an MRI scan which showed a large tumour. Nicole’s surgeon was unable to remove the entire tumour because it was wrapped around the spine, so Nicole had 8 weeks of radiotherapy. It meant travelling from Kent to London every day for 8 weeks. She had to miss the first 2 months of secondary school. Nicole then had 6 monthly scans to monitor any changes.

Nicole then started getting pain in her back. In April 2002 when Nicole was 13, she had various tests including a lumbar puncture and an angiogram. Nothing showed in these tests to indicate that there was another tumour. Nicole’s cancer is so rare that she was told that it was very unlikely for it to reseed. A biopsy was necessary, so she had an operation in the July. When Nicole’s back was opened up her surgeon saw an AVM (Anterior Venous Malformation) a ball of engorged blood vessels. Nothing was done at the time because it was too risky.

On December 14th 2002 Nicole was at home when she collapsed with a brain haemorrhage. She was rushed to hospital where she had tests and a scan. Nicole was unconscious at this stage. The next day she was rushed to Kings College Hospital in London where she had her operations. No one knew what was wrong with her. She had more tests and scans. She was slowly deteriorating and her vision was getting blurry. She slipped into a coma. When she woke up 5 days later (Christmas Eve) she had suffered a stroke down her right side, had bells palsy in her face and was blind. She was having fits and was put on a high dose of an anti-fit drug. Nicole couldn’t speak or move. She needed feeding tubes and was attached to drips. She then had a near fatal reaction to the anti-fit drug. Her whole body was covered in spots, her throat and lips were swollen and her mouth and tongue were covered in ulcers. Doctors still didn’t know what was wrong with her.

In January 2003 another biopsy was done and doctors discovered that under the AVM was another tumour. The blood vessels were feeding off the tumour and a vessel burst which travelled to her head, causing the haemorrhage. Further scans showed what were thought to be tumours covering Nicole’s brain and spine. Nicole’s mother was told her cancer had returned, and that she needed chemotherapy. After a bit of persuasion Nicole agreed to start treatment – mainly because she could have chemo in tablet form and it wouldn’t involve needles, her biggest fear.

She started chemotherapy on the 7th February, 2 days before her 14th birthday. She didn’t cope well with it. She was very sick and didn’t eat. Doctors arranged for her to go home on March 1st. A few days later a nurse told her she wouldn’t get better and only had a few months left to live. That’s when Nicole became a stubborn and determined little madam! She started to eat and began fighting back.

She had 9 months of chemotherapy, finishing on 18th February 2004. She lost her straight dark hair, which was now curly! Nicole was also told she would never walk again, but Nicole was determined to prove everyone wrong! In March 2004 Nicole had a scan. Doctors then concluded what had been thought to be, the tumours in her brain were in fact infarctions – tiny little blood clots.

Later that year Nicole decided to write her autobiography “The way I see it”. She wanted to share her experiences with other people. It is available now in all good book shops and on Amazon.co.uk, priced £6.99. It’s a bit of a tearjerker, so have your tissues ready when you read it!

Nicole relapsed again in September 2006. She under went 6 rounds of intense chemotherapy which she finished in February 2007. She is now in remission again.

Soon after she finished the chemotherapy she started to lose the hearing in her left ear. A scan showed a small tumour in each ear called an acoustic neuroma which luckily are benign. Unfortunately she has less than 10% hearing left in her left ear. She had 6 weeks of daily radiotherapy at the end of 2007, and finished in January 2008. Only time will tell if it will save her hearing in the right ear. The tumours are connected with a condition called neurofibromatosis type 2, which Nicole has symptoms of neurofibromatosis type 1. She is now having tests for NF2, but hasn’t yet been diagnosed.

She has set up her own website where she writes a weekly diary, sharing all her news. Visit it at www.c-h-o-c.org.uk

Upate 13th February 2008

I have now moved on from Post Pals and would just like to say a massive thank you to everyone who took the time to send me post. You really have made a difference and I’ve made some good friends through being on the site who I’d like to keep in touch with.

Just a short update before I go. Health wise I’m not great at the moment. My hearing has deteriorated quickly and I’ve now lost 95% of my hearing in my left ear and 70% in my right. Only now are people starting to take it seriously so I’m having urgent referrals for hearing tests etc. We don’t quite know at the moment what the future holds for me, and if I’m going to spend the rest of my life as deaf, blind and disabled. I will be updating my website though so you can keep up to date with how I am by reading my diary.

I’ve received quite a lot of post this month. Thank you to Viks, Kate Dee, Carol and Dave, Jenn, Julie, Becky Butler, Erin F’s Nanny and Grandad, Helen F, Vicki and Susanna.

So one last goodbye and thank you again. xxxx

Update 8th February 2008

Molly and Daizy didn’t win the hero dog award but we did get some good results yesterday – the latest MRI scan results show no growth. I’m still in remission and the backache is not to do with the tumours regrowing. Yay!

Update 29th January 2008

I haven’t been feeling great this month. I’ve been getting really bad back ache and shooting pain in my hand which is the usual signs of my tumours re-growing. I’m going to have a scan on friday to get it checked. I’ve had a few infections so that could also be the cause. Fingers crossed anyway.

My dogs, Molly and Daizy, have been short listed in the ‘hero’ category in the first ever Dogs Trust honours. It’s an award just launch by the charity, Dogs Trust, to recognise what dogs do for their owners. I nominated Molly and Daizy for the support they’ve given me over the last seven years. They are up against four other dogs and readers of the Sun newspaper have to vote for the winner. We would really appreciate it if you would vote for Molly and Daizy by visiting
http://www.thesun.co.uk/sol/homepage/woman/real_life/article723942.ece

It’s quite easy to do. Just click on the photo of Molly and it will give you our story, and then at the bottom of the page there is the button to vote. Click on that, tick the box with Molly and Daizy, enter the code and press vote. You have until the 5^th February to vote, and we are going to a star studded award ceremony on the 6^th February where we’ll find out if we’ve won. Fingers crossed!

Thanks this month goes to Julie Barrett, Kirsty, Kira M, Helen F and a big thank you to Post Pals for the lovely card you sent to congratulate me on my book launch. I can’t believe they didn’t have any cards saying that, and it doesn’t matter it said birthday babe! It’s nearly my birthday anyway so I’m going to keep it on the side!

Update 7th January 2008

I finished the six weeks of radiotherapy today. I had no real side effects apart from feeling really tired. I’ve had the odd headache and sore throat but the worst part has been the four hours of travelling a day. I’m going to have a check up at the end of the month and an MRI scan in 6 weeks time to get an up-to-date scan. Fingers crossed things go well from now on…

This month is really exciting for me as my book, The Way I See It, is out. It is available now from WH Smiths, Waterstones, Asda, Boarders and Amazon. I’m having my launch party on the 10^th so I’m really looking forward to it.

Thank you to everyone who sent me a Christmas card, Katie, Kirsty, Julie Barrett and family, Despina. Thank you too to my ‘elf’ Susanne Miller. A massive thank you to Susanna for another lovely parcel. I really do love your parcels! I hope you liked what I sent you! Thank you also to the person who sent me the Christmas sweets and impulse set. The parcel was a bit ripped and there was no name or address on it, so I don’t know who they’re from, but thank you if you read this.

Update 1st December 2007

I’ve now started my radiotherapy. On the 5^th November I went to The Royal Marsden Hospital to have a mould made of my teeth. It was horrible and quite uncomfortable. I left with a blister on the roof of my mouth. The mould is to keep my head in the same position for every treatment. They use suction so that the mouth piece is really secure. This makes it get stuck to the roof of my mouth and the part that makes it hurt. They attach screws and metal frames etc to the mouth piece to keep it all secure, and it gets attached to the table.

I was back at the Marsden on the 6^th for a CT and MRI scan. I coped ok with the cannula. I took valium again, and I’ve now started having counselling for my needle phobia. Both scans were to get specialist pictures to plan the radiotherapy. They are making the rays the exact size of the tumour so it only kills the cells they want.

I started my 6 weeks of daily radiotherapy on the 21^st November. I’m having 30 treatments, so I’m counting the days down now. The treatment’s bearable, but it’s making me really tired. I travel 4 hours a day for 15 minutes of treatment. My date to finish is the 7^th January.

I went to Guy’s Hospital on the 28^th to see a neurofibromatosis specialist. I was suspected to have NF1 seven years ago, but was never diagnosed because I didn’t have all the symptoms. The acoustic neuromas in my ears, which I’m having the radiotherapy for at the moment, are a sign of NF2. I had a blood test taken to do a gene test which takes three months. I’m going back to Guy’s in March, so maybe then I’ll finally be diagnosed with neurofibromatosis.

I have quite a few thank you’s this month. A big thank you to Kirstie, Laura, Laura, Rebecca and Emma for the lovely envelope of very girlie sparkly cards. Thank you also to Julie Barrett, Kirsty A, Kingsley for the note and lovely picture, Louise Woodcock for my first Christmas card, Denise, Kate Dee and Post Pals as usual.

Update 27th October 2007

I found out last week when my radiotherapy will start – the 21^st November. I’m at the Marsden on the 5^th and the 6^th to have a mould of my teeth made and for scans to plan the treatment. They are going to make the radiotherapy rays the exact shape of the tumours so that it only kills the bad cells. The mould of my teeth is so that a bar can be connected to it and screwed onto the table so that I don’t move. I’m glad now I have a date so that I can plan things round it.

I’ll keep you updated with any news.

Thank you to Julie for the card and present and June Junko and Kirsty A for the card and letter.

Update 2nd October 2007

I had my scan on the 21^st September at The Royal Marsden Hospital. I had to take valium to calm me for the cannula because my fear of needles has got so bad. It helped quite a bit. I was still anxious and didn’t like it, but I didn’t cry hysterically, so it was a big improvement! I had my spine, brain and inside of my ears scanned. My oncologist wanted this scan done because the one I had a month ago at my local hospital showed my brain differently to the pictures the Marsden normally take, so they were a bit worried that my cancer might have spread to my brain.

I went to Scotland the next day for five days. It was really nice to get away and see friends and family for a while, and it took my mind off my results.

I got my scan results yesterday, and everything is ok. When the Marsden looked at the pictures they took there’s no change to the last scan they did. It just looked different because my local hospital did it differently. My cancer hasn’t spread to my brain, and my tumours on my spine are still stable. It’s a big relief as I’ve been getting lots of headaches recently, but I’ve to just stop worrying and getting stressed now. Plus my oncologist said that he would be surprised if I didn’t get headaches with what my body has been through. As for the radiotherapy for the tumours in my ears, I’m going to speak to a radiographer next Wednesday. We aren’t going to rush into it. The tumours are benign and slow growing, so it’s ok to wait a while. There are side affects to the radiotherapy, so we have to think carefully about it.

The following week I should be seeing a specialist in Neurofibromatosis to see if I can finally be diagnosed with the condition. I have symptoms of NF1 and NF2, so we’ll just wait to see what happens.

I spent all day today going through my box of Post Pals post. I didn’t realise how much post I had actually received. I don’t think I managed to reply to everyone that sent me something, but I promise I will in the future, so please put your address on what you send to me. Thanks! Xx

Update 15th of September 2007

I had a check-up at The Royal Marsden on Monday. I spoke to my oncologist about the tumours in my ears and how to treat them. He has recommended six weeks of daily radiotherapy starting next month. I’m going to have another scan on the 21^st because something suspicious showed up on the scan from last month, so it needs to be checked. They’ll work out the radiotherapy from those results. They have to be careful not to do it in the same area as my radiotherapy seven years ago. It’s really annoying and I don’t really want more radiotherapy, but I’m glad something is being done about it to try and stop them growing and causing more damage.

I saw another specialist on Wednesday at my local hospital who I was booked to see anyway before I spoke to my oncologist. The specialist said he thinks I should wait and not do anything, then have another scan in six months, and if there’s any change, then do radiotherapy. Radiation could end up causing more problems if we rush into it now. I left feeling really confused what to do, but I think I’m still going ahead with radiotherapy. If we left it I could lose more of my hearing. I only have about 20% in my left ear. If I lose the hearing in my right ear I won’t have any way of communication because I’m totally blind too. I won’t know any more about the treatment until the end of the month. I’ll keep you posted though!

Update 23rd August 2007

I’m doing quite well at the moment. I’m on antibiotics again because I keep getting urine infections, but I’m on a longer course this time so hopefully it will work.

I got the results of the MRI scan yesterday to find out what’s wrong with my ear. I have an intracranial acoustic neuroma. It’s a benign tumour in each ear. They’re slow growing and half a centimetre in size. The damage that’s already been done can’t be fixed. Luckily the tumour in my right ear hasn’t affected my hearing. I’m going to see a specialist in a few weeks time, but I don’t think anything can be done though. Oh, and as usual… it’s rare! It could have something to do with neurofibromatosis, which I have parts of. I haven’t been properly diagnosed with the condition because I have parts of NF1 and NF2, so they don’t know if I have it or not.

On to better results. I got my English GCSE result today. I got a B, which I’m quite pleased with. I was only 5 marks below an A though, so I’m slightly annoyed too! I’m still pleased with it though because I only went to college full time from March to June when I finished chemo and that was for one lesson a week, so I had a lot to catch up on.

Update 1st August 2007

I’m doing much better after the last couple of urine infections. I had a great time being pampered at a spa last week, but i hurt my foot in the swimming pool, and my toenail later fell off! It’s fine now though.

I have an MRI scan on the 15th to try and find out why i have hearing loss. I’ll update after that.

Update 15th July 2007

I had a hearing test on Wednesday. I’ve been finding it hard to hear things properly for about 6 months. The test revealed I have a severe hearing loss in my left ear, and a slight loss in my right ear. I need to have an MRI scan of my ear now to have a closer look. It’s not connected to the chemo. My types of tumours grow on the end of my nerves, so it could have something to do with that. I don’t know when the scan will be, but I’m preparing myself now for the canula.

I recovered after my last urine infection, but got a worse one last week, so I’m now back on antibiotics for longer.

Thank you to Janice Casey for donating to my fundraising target, and to everyone who continues to send me post.

Update 24th June 2007

I had my GCSE at the beginning of June. I think it went ok, but I have to wait now until August for the result.

I had my latest scan on the 13^th June. I had a kidney test too to check they’re repairing after the chemo. I had to have two canulas put in which I didn’t like, and nearly fainted with. I got the results on Monday, and my tumours haven’t grown. If anything, they’ve shrunk a tiny bit. My kidney test results were fine, and I also had an echo scan of my heart the day I got my results, and that’s getting better too. I was really pleased with those results. I don’t have another scan until December and a kidney test in a few years time.

For the past 10 days I’ve had a bad headache and been vomiting. A urine test on Friday showed I have a urine infection, so I’m on antibiotics at the moment for that. I feel much better now I’m taking something for it.

Thank you to Sarah for the smelly products, and for also sending some dog biscuits for Molly and Daizy. They loved them!

Update 22nd May 2007

I’ve been quite well recently. I’m back at the gym and at hydrotherapy, and I’m really enjoying it. I’m revising at the moment for my GCSE English exams on the 5^th and 7^th June. I can’t wait to get them out of the way. My next scan is on the 13^th and I get the results on the 18^th. I’m also having a kidney and heart check up on those dates.

I now have a publisher for my autobiography, and it will be published in January. I am editing bits of it at the moment, and over the next few months it will go back and forward to the publishers. I’m really excited about it.

Thank you as ever to Susanna in North Carolina for the brilliant parcels. I love them! Thanks also to Leoni for the letter.

Update 26th April 2007

Last week I had a check up with my paediatrician, and an ultra sound of the blood clot. It’s still there from my lower stomach to my knee. Today I saw a specialist at a haemophilia clinic. He reassured me a lot about the clot. It will go away in time, and won’t move. I have to keep having the anti-clotting injections. It was number 143 today. I’m coping ok with them.

I’ve been told its ok to start exercising now, and going back to the gym. I plan to go on the 8^th May. This weekend I’m doing a sponsored walk (details on my website) and I plan to walk a few steps at the beginning and end. Mum will push me the rest of the way.

I’m feeling much better. Almost back to normal I think. My hair is growing quickly, and my eyelashes are really long. People keep saying I look like Sinead O’Connor.

Thank you to the people who continue to send me post. It’s much appreciated. xxx

Update 31st March 2007

I’ve been feeling better over the last few weeks. My leg is almost back to its normal size, and there is hardly any pain. I still panic sometimes that it’s getting bigger, and ask Mum to check if my leg has turned blue. I had a blood test last week (nightmare now that the hickman line has gone) and the porter at the hospital didn’t pick my blood up until the next day and the lab said it was too old and refused to work on it. I wasn’t happy! I have a blood test next week, so i will be making sure the blood gets there!

I have an ultrasound of my leg booked for the 19th April. That will check if the clot is disappearing. I am still having the daily anti-clotting injections. I’ve had 118 now!

I started doing physio again yesterday. I walked a few steps with my walking frame. I’m trying to build my strength up for my sponsored walk on the 28th April. It is a 5 and a half mile walk and i want to walk a few steps at the beginning and again at the end. I am hoping to start back at the gym after Easter.

My nails are really horrible. They’ve broken off and are really short. Good news though is that my hair is really stubbly now!

Thank you to Post Pals for my lovely Marsden t-shirt and I hope everyone has a great Easter.

I’d like to thank Post Pals for all their support. I’ve been a ‘Pal’ for a year now, and have received some amazing gifts, cards and letters, and have made some new friends too. It really does ‘Post a smile on a sick child’s face’. The site helped me a lot through my recent chemotherapy and thank you to everyone who sent me something, and continues to send me things xxx

Update 12th March 2007

I had my scan results this afternoon. My tumours have stayed stable. They might have even shrunk a little bit. My next scan is in June. My oncologist has stopped a few of my tablets too, which i’m pleased about. I had the bandage changed on the cut where my line used to be. It’s healing nicely and doesn’t hurt.

Update 7th March 2007

I went into my local hospital on the 19^th of February with a large blood clot in my leg. It was absolute agony. It was from my hip to my knee. I had x-rays, ultrasounds, scans, and blood tests, to find out how to deal with it. It was quite confusing because I’ve been on anti-clotting injections everyday for 3 months to prevent another clot after I had one in my arm in December. I am now on a new higher dose of injection. I spent over 2 weeks in hospital, and only got out yesterday. I kept catching line infections which kept me in for longer. I got totally fed up as there is nothing to do there. After I had grown the third bug in my line, they started me on a new antibiotic. Half an hour after having it by drip, I started scratching and coming out in spots. I now have to put that name on my medic alert bracelet.

I went to The Marsden today. I had an MRI scan. I’ll get the results of that on the 12^th. They decided while I was there that they will take my hickman line out tomorrow afternoon, because it keeps getting infected. Hopefully that means no more trips to my local hospital for IV antibiotics.

I will update next week with my scan results.

Update 16th February 2007

I finished my final round of chemo yesterday. Woohoo! I had a much lower dose because my heart scan results were borderline. My kidney has improved since the last test though. I am on anti-biotics at the moment because my line is infected. Mum has to put a special bandage on everyday. My next MRI scan is on the 7^th March. I get the results on the 12^th. I need a kidney test and echo scan every 3 months for the next couple of years.

Thank you so much to everyone who sent me birthday cards and presents. Thank you to Nicole B, Laura H, Leoni, Julie Barrett, Kate Dee, Hayley for the brilliant badge, Heather and everyone else.

Update 5th February 2007

I’ve had my 5^th round of chemo in the last month. A couple of weeks ago I got a bad virus and spent a while in hospital. I felt awful, and needed another blood transfusion. I should have had my final round of chemo last week, but we delayed it for 2 weeks, until after my birthday. If I had had it last week like planned, I probably would have been ill on Friday for my birthday. I will start it on Monday, and finish on Thursday.

Update 30th December 2006

I had a blood test taken yesterday, and it revealed my platelets are really low. Normally that would be ok, but because I’m on anti-clotting injections, and platelets are what clot your blood and I don’t have many, they said I need a platelet transfusion. I’ve never had one of these before. I need to go to hospital tomorrow morning to have a blood test, and if that shows that my platelets are up enough I might be able to come home. If not I need to wait and have the transfusion. It takes about 5 hours before they arrive, but only about an hour for the transfusion. I could be starting my year in hospital.

Update 23rd December 2006

I finished my forth round of chemo on Thursday. It ran quite smoothly. I have an infection in my line which needs IV antibiotics. They finish tomorrow. A nurse is coming to our house to do it which is good. Otherwise Mum would have to drive 45 minutes to hospital, for a 2 minute job.

I got my scan results while we were there, and my tumours have stayed the same size as before my treatment. It means the chemo is working. I only need 2 more rounds of chemo. My specialist said that will be enough. I’ll have another scan after that, and then my hickman line out a few months after that. I will be scanned every 6 months for a while.

The injections are going well, if that’s what I can say. I’ve had 21 now, and counting!

Thank you to all the people who have sent me Christmas cards and presents. To Natalie for the lovely bracelet, Colette for the tape, Kate Dee, Aled G, Faye T, my lovely ‘elves’ Carol and her Mum, and anyone I’ve forgotten. There’s been so much this month. I do appreciate it all.

Merry Christmas to everyone. xx

Update 7th December 2006

It has been a bit of a rough week. I had my third round of chemotherapy last week, starting Monday. I had a lower dose than the previous rounds because the kidney test I had the week before showed that one of the chemo drugs had damaged one of the vessels to the kidney. It can be repaired with time, and hopefully by the next round of chemo so that I can have high dose again. Things went smoothly until Wednesday when my Hb came back at 8.2. It should have been much higher at that stage of my treatment. That meant the blood transfusion I thought I had got out of the week before, I had to have. It was a 6 hourly one overnight, so I was less aware of this one. My chemo finished at 5pm on Thursday, and transport was supposed to pick us up then. My right arm started hurting almost instantly after being disconnected from the drips. Transport finally picked us up at 7pm, so by this point I was quite stressed because I just wanted to get home. We finally did at 9.30pm after being on an uncomfortable minibus with other patients, dropping them off along the way. My arm was agony by this point. When Mum looked at it in the light, it was a funny blue colour. I could hardly move it. My veins were sticking up, and my arm was fatter than the other. Mum phoned the nurses and they said it could be a clot and I had to go straight to The William Harvey hospital. I couldn’t believe it, but then again, I could.

So yet again I was having a chest x-ray at 1.30am. I had blood taken too and the results showed a thrombosis. They said they needed to give me an injection in my stomach. Not something I wanted done at 4am. It stung a little bit.

Friday my arm still hurt as bad. I had an ultrasound, which revealed there wasn’t a thrombosis, even though my blood said there was. I also had an ECG, but those results didn’t show much. I had another injection on Friday and Saturday in my stomach. I was also started on warfrin. Doctors couldn’t find the clot, but most of the tests revealed there was one there, so they were treating me for one.

On Sunday the injections stopped and my arm was much better. I was supposed to have an MRV scan on Monday, but the hospital couldn’t do it because they needed a specialist, so I have to go somewhere else for one. There was blood in my urine too, so that was quite frightening. They said they had to get the balance right with the warfrin. A few hours later they said they had to stop it because it can be quite dangerous and I’m on lots of other drugs, and start the injections again, and I would probably need them every day for 3 months. I have a total needle phobia, so this was the worst news ever for me. I prepared myself for hours for them to start, but then I was told I didn’t need one that day, and that they would give me some vitamin K and they let me come home.

The injections started yesterday. I’m coping with them better than I thought I would. I still don’t like them though.

My MRI scan is booked for Monday 11th December. Keep your fingers crossed for me.

Thank you to Collette, Julie Barratt, Nicole and Lauren B, Dispena.

Update 26th November 2006

I spent this week in my local hospital. I had a very high temperature on Saturday night. I felt really rough over the weekend, but the doctors couldn’t find out what was causing the temperatures. All the tests were coming back negative. I picked up on Tuesday and my temperature stayed down. Thursday morning I was told I could go home, but then my blood results came back and revealed my Hb was 7.9. I was due to go to The Royal Brompton during the day for an echo scan, so a blood transfusion was scheduled for when I got home. The echo results were good and I’ve gone from being borderline 28% to 34% and I can have high dose chemo again. When we got back from the Brompton, they said there was a problem with the blood sample they sent off and the blood wasn’t ready. I had to have another sample taken and wait for the results. When they came back my Hb had gone up to 8.7 and I was allowed to go home without a transfusion.

I had a kidney test and ultrasound on Friday at The Royal Marsden. I’m back there tomorrow for my third round of chemo. I will be scanned after this round. I haven’t got a date for that.

Thank you for all the post people have been sending. Thank you to Bob, Chloe and Kelly.

Update 2nd November 2006

I’ve had a bit of a rough time this last week. Things were going really well, and I felt fine until last Thursday. I had a really high temperature, so had to go to hospital. I had an infected hickman line, and it was agony around the place where the line goes in. It hurt every time I moved. I got totally fed up in hospital. My hair began to matt, and it was really sore and itchy. Mum had to cut it in the end, and practically all of it has fallen out now. I have a wig though, luckily. On Monday I had a blood transfusion. I didn’t want one, but it made me feel better. Someone had to bring a hat for me for coming out of hospital on Tuesday night. I went in with a full head of hair, and came out with none! I finished the antibiotics yesterday. I was supposed to start my 2nd round of chemo today, but that has been postponed. I need to have an EDTA scan tomorrow, then an echo scan on Monday. I might be staying in hospital then for the chemo.

Thank you so much to everyone who has sent me cards and presents to cheer me up. They really have done the trick. Thank you Susanna for your amazing parcels, and giving me something I’ve wanted since I was a kid, my own monkey! Kate Dee for continuing to send me cards and for the gorgeous grey bear, Nicole B for the cute Eeyore and for putting lots of thought into my card, Sylvi, Becky, Julie Barratt, Kate Post Pals for the earrings, Viks for chemo duck (cutest thing ever!) Karen, Kelly, Christina, Alex and a huge thanks to the sparkling strawberry company for the box of 7 pink wigs and cowboy hat!

Update 28th October 2006

Nicole has been in hospital in Ashford since Thursday evening with a high temperature and an infection, but she should be home tomorrow.

Update 17th October 2006

I got out of hospital on Sunday. There has been no side affects yet apart from tiredness. Thank you for chemo duck, everyone was impressed with him at the hospital. I will take a photo of me with him soon and send it to you.

I will be on City Hospital this Friday, BBC1 between 10-11am. Fingers crossed that i’m well enough though! I’m staying in London the night before. If they want me then they have to pay for me so they are putting us up in a hotel! Please can you let people know that would like to see me on the show.

Update 11th October 2006

I had an echo scan on Monday to check my heart could handle high chemo, and luckily it can. I am having my hickman line in tomorrow and start chemo on Friday. It is a 22 hour infusion, so it’s going to be quite boring. I’m not looking forward to the hickman line being put in. I’m scheduled to have it done at 3pm.

Update 29th September 2006

I got my full scan results on the 24th. Mum found out on the 22nd, but i was having a weekend away so she didn’t want to spoil it and told me when i got back. Both my tumours have started growing back. I went to the Marsden the next day to see my specialist and he wants to start treatment in a few weeks time. I will have a hickman line so i won’t be pricked with needles all the time. I will start with 3 courses, and then i’ll be scanned after that to see if it’s working. I was a bit upset at first, but i’m doing ok now. I’ve done it before so i’ll do it again.

I start my chemo on the 12th of October. The line is going in the day before. I’m not really looking forward to that. I’ll keep you all posted with any news.

Thank you Susanna for the great box of presents and for putting so much thought in to it. Thank you also Julie Barratt, Kate Dee and Despina.

Update 21st September 2006

I had my scan on the 19th, and my doctor had a quick look at the results. He said that it looks ok, but he is going to compare to the rest of my scan results from the last few years. I’ll get the full results next week.

Update 3rd September 2006

Nicole has had a lot of backache since the last update. She has been feeling a bit run down and headachy. She is seeing her doctor on the 5th of September. She is going to ask for a scan as she is getting pain in her arm again too. Her back has been hurting more than ever this month, and she just can’t get comfortable in her wheelchair. Painkillers don’t seem to help.

She had a trip to Harrods a few weeks ago, and loved it. Shopping’s what she does best!

She is going to Scotland for a week to have a break. She is really looking forward to it. She has family who live there, and is meeting up with the agent who is helping with her book.

It’s been a busy month for post. Nicole would like to thank Julie Barrett and Kate Dee as usual, Susanna, Jen, Nicole and Lauren B, Marry Anne, Eleanor and the person who sent the poem and little balloon thing. You didn’t leave a name, but thank you.

Update 29th July 2006

Nicole had a few days this month where she didn’t feel well. Her chest felt a bit tight, and she had a headache. It was probably down to the weather as she doesn’t cope too well in the heat. Her back has nearly recovered from the fall, but she still gets painful spasms now and again. It will just take time to heal. Apart from that she is fine.

She used crutches this week at the gym which she loved. She said it was harder work than she thought. She will continue her physio, hydro and gym work in the summer holidays. She has broken up from school now. She starts college in September.

At the moment Nicole is trying to think of fundraising events to reach her target of raising £30,000 for The Silver Lining Appeal. If you have any ideas, or are able to donate anything please visit her website.

Nicole would like to thank Julie Barrett for her continued support in sending gifts and cards, and for the lovely box she made.

Update 2nd July 2006

Nicole didn’t have too good a month last month. On the 5th of June she fell off her horse, Sox, after she got spooked by some children messing around in a bush. Sox jumped and tried to gallop off and Nicole fell back flat on her back. She was dazed and confused for a bit, and couldn’t remember what had happened at first. Her head was thumping, and she couldn’t feel her back, so an ambulance was called, and she was strapped onto a board and taken to hospital. Nicole spent the rest of the day there. She had a CT scan, but everything was fine and Nicole was given a week’s bed rest. She was due to do a competition on the 8th of June at Hickstead, which she was really looking forward to. Missing that upset her the most. Her back was really sore, and Nicole was unable to do anything properly for a long time. She has since been back to horse riding. She is still getting twinges in her back; it’s something she didn’t get before. She is going to visit her doctor again to see how to treat it.

Still no news on the scoliosis front!

Nicole would like to thank everyone who has written to her, and sent gifts. Thank you to Kate Dee, Julie and Alan Barrett, Becky Butler, Katie and everyone else.

Update 6th June 2006

Nicole has been really well recently (although she did fall off her horse). She is still waiting to hear about how her scoliosis is going to be treated. Her back is aching a lot which means she can’t spend a long time in her wheelchair, but she did manage to go to see Take That in concert last week. She left in the afternoon and didn’t get back until early morning! She had a brilliant time though. Thank you to Claire for getting in touch with Post Pals and giving her the tickets. Thank you also to Becky Butler, Julie Barrett, Caroline Wood, Kat for the lovely monkey thing [she loves monkeys], Kate Dee for the pampering set, Kate and Post Pals for the lovely cards with encouraging messages, and the personalised grey bear card. She loves grey bears.

Update May 2006

Nicole was diagnosed with scoliosis in March. She is waiting to see a specialist to see how to treat it. It explains why she has been getting bad backache. Apart from that, she is doing really well. She is improving in her walking. She can now walk 15 steps unaided in the hydrotherapy pool and has been on City Hospital (on the BBC).

Nicole would like to thank the people who have sent her things through Post Pals. It really does cheer her up. Thank you to Julie Barrett for the fudge and mini eggs and to Becky for the murder mystery tape. Thank you to Nicky W, Becky Buttler and Cherry for the letters and emails. I love receiving emails because my laptop reads them to me and I can reply to them. Thank you for all the cards, especially to Kate Dee for the 3D cards that I can feel.

Story written 2008

Hi there, my name is Madison and I live in Staffordshire. I am 2 years old and live with my Mummy, and my sisters Lauren (14) Megan (7) and Tyler (6).

On 1^st February 2008 my left leg started to hurt me so I went to the hospital for some tests. I had an MRI scan and was then diagnosed on the 18th February with cancer. I have a Rhabdoid tumour in my left pelvis capacity. I have been to Birmingham hospital and our local hospital the City General where I have started chemo. My hair fell out but it doesn’t bother me. I just want this horrible disease to go away and be able to walk again. I have lots of support from all my loving family and friends.

Madison has a very rare, aggressive type of cancer. The tumour has shrunk with chemotherapy which the doctors didn’t think would happen as they gave her 6 months to live back in February. She is awaiting radiotherapy to try for a cure but the doctors have said her chances are very slim. If the radiotherapy doesn’t work we will loose our daughter to this horrid disease.

Update 18th March 2014

Annette, Megan and Tyler (mum and sisters of Madison) would like to say thank you to those who sent post and gifts to mark Madison’s 4th memorial today. It means a lot to know she hasn’t been forgotten. The girls really appreciate the post they still get, thank you.

Update 27th March 2010

We are so proud of the send off we gave Madison yesterday. Thank you to everyone who joined us and for all the beautiful cards, flowers, donations, and special gifts. Fly high now Madi, we are missing you so much.

The girls say thank you for their post too. We would still like to get some post to take to Madi’s grave to show she’s not been forgotten. Our love to you all xxxxxx

Update 23rd March 2010

Madison’s funeral will be held on Friday 26th march 2010. Please meet at Central Hall Methodist Church, Longton, at 11.15am. Burial will take place after the service at Fenton Cemetery, Fenpark. We will then be celebrating the life of Madison at the Poole Dole pub, Fenpark Road. Please wear something bright and flowers are welcome or donations to the Donna Louise trust via Tim McGough funeral directors, Tunstall. Details will also be in tomorrow nights Sentinel paper.

Update 19th March 2010

Madison Francess Ellen Allsop Parton passed away at 7.55pm on 18th March surrounded by her mum, dad and sisters. Rest in peace our darling angel… love and miss you, but in our hearts for ever and ever xxxxxxx

Update 17th March 2010

Madison is still fighting but remains in a deep sleep.

Update 12th March 2010

Just to let you know we are still at Treetops and tonight Madison has taken a turn for the worse. She is stable but very weak and sleepy and not very aware of her surroundings. The doctors have decided its best to up her ketamine pump and her diamorphine pump to quite high levels and she’s also having sedation. In the morning they are going to catheterise her as her bladder is becoming squashed by the tumour causing extra uncomfort of her bladder.

She’s very swollen now and it’s getting very difficult for us as we can see the tumour damage. She’s black and blue over her buttock and leg, her hip is triple the size it should be and she’s got a new large lump in her back.

Madison’s cancer is spreading very quickly now and we only have days left with her, maybe a week or two maximum.

We are so heartbroken but we’re staying strong for her. We have no more to say but will update when we can. This is a very scary time for us as Madison could pass away at anytime.

Thank you for the post received and for the beautiful flowers from Jamie and family xxxxx

Update 7th March

Madison is now tired and not well. She’s hooked up to a diamorphine and a sedative drip and we know we don’t have much time left with her. We are at the Treetops, Donna Louise Hospice, where Madi will pass away.

Thank you for all your support and beautiful letters and cards, we have put them all on her room wall.

Update 5th March 2010

I might not be online for a while as Madison is deteriorating very quickly. She now has cancer of the pelvis, stomach, bladder, chest and lungs. The disease is taking over her body quicker than we’d hoped. Please pray for her and her sisters. Mummy will be with her always xxxx

Update 27th February 2010

Madi has had a rough day. She has been suffering with laboured breathing and wheezing. She had a chest X-ray which showed some mucus, but mainly that the cancer is causing her breathing problems.

Update 24th February 2010

We are devastated after meeting with Birmingham consultants. Madi is too poorly to continue the trial. There is nothing more we can do for her. All we can do is comfort her until she slips away.

Update 22nd February 2010

Madison remains in hospital as she is still really poorly. She is also still on tpn and 5 different antibiotics, spiking temperatures, having lots of runny nappies despite being nil by mouth, and having blood traces in her urine too. She is still having lots of samples checked to see if they can find an underlying reason. We have asked about a scan this morning but the doctor feels she is not well enough to tolerate it yet. They have upped her ketamine once again as her pain is still bad. We are hoping to get her more comfortable even if it means lots of pain relief as the last thing we want is for Madison to suffer. She has her bright moments and yesterday she had a bowl of snow in her room to build a snowman. On Friday, Alex Winters from cbeebies came to visit her and she loved it!!! She got a very special signed photo.

Update 31st January 2010

Thank you to all the people that have post to the children. They have learnt to smile again – it makes a big difference to them all to feel special.

Update 25th January 2010

We went to Birmingham last week (as you may of read from the last update) and have been back again today for Madison’s mri of her pelvis and the CT of her lungs and chest. Unfortunately we didn’t see the doctor so we don’t have any results as of yet. Madi coped really well with the anaesthetic and was a really brave girl.

She should be on line to start her new chemo next week in Birmingham but we don’t know what we’re dealing with until we get the results.

This is still a hard time for us and an anxious wait. I’ll update as soon as the results come through.

Update 19th January 2010

Just to let you know that Madison is doing much better now and is over her recent illness.

We have been to Birmingham today to sign the consent forms for her new chemo trial and to have baseline bloods done, kidney function tests, and an echo and eeg. She was really good and kept really still. We get the results on Monday when we have to go back for her mri scan. If all is ok, she will start her new trial the week beginning 1st February. It is an excited but apprehensive and nervous time for us too. I’ll update again on Monday to keep you informed.

Update 27th December 2009

Hi everyone I hope you have all had a fantastic Christmas. We got our wish and spent it at home all together. The children had a great day and they all had lots of lovely presents. Madison’s favourite was her drum set and her electric princess scooter, Megan’s was her guitar and Tyler’s was all her tinkerbell stuff. It’s going be a bit noisy in our house!!

On Boxing Day we had a play day where the kids got to go through all their presents and enjoy them. After dinner Madison spiked a temp and became quite snotty, she had a really bad night and continued to spike temperatures.

This morning, after 25 minutes sleep, I changed her bum and noticed some spots on her – after checking her over I noticed the poor little mite had chickenpox!!

We have been up to the hospital to the doctor as Madison is really unwell at the moment and she has been given 2 lots of antibiotics, as not only does she have chickenpox, she also has severe tonsillitis and very swollen glands. The doctor said she will get worse before she gets better, so we have got to keep a close eye on her and will have to take her up if she becomes really unwell. I’ll update in a few days to let you know how she’s getting on.

Hope you all had a good time and got all your wishes. Love and best wishes to you all and thank you for all the lovely cards and gifts xxxx

Update 16th December 2009

We have just got back from Birmingham Children’s Hospital where we have been to see Madison’s consultant and research sister. After a very long discussion, we have decided to go ahead with the trial for a new chemo for Madison. She will start around mid January after having some more scans, a new cl put in, a biopsy, and a heart scan. The chemo she will be on is new and hasn’t been used before so we are hoping we get some pleasing results. We do have to remember that there are no answers to this trial, so it might not do anything whatsoever for Madi, but I will continue to hope and pray it does. Madison will have to spend 3 days out of 21 days at Birmingham hospital for treatment, she will experience most of the side effects she has before and may loose her hair again, but if we don’t try this then we lose her anyway, so I’m sure that accounts for the side effects. Madison will now stop etoposide as she has to be chemo free for at least 4 weeks prior to starting the trial.

At least now we know we are going to be at home for Christmas and the New Year and are going to have a really amazing time. I have just had my Christmas present of good news and couldn’t wish for anything better. I just wish Madison the best of luck and pray this will be her miracle.

Hope everyone has a fantastic Christmas and our love and best wishes to you all. Let’s hope 2010 is a good one! xxxxx

Update 9th November 2009

Madison had an mri scan today and we are totally devastated by the results. Her tumour has grown and spread, there are more tumours in the area now too and lymph nodes. Life is so cruel, i feel so numb right now knowing my little babe can’t beat it. So sorry to post bad news.

Thank you for all the recent post.

Update 5th November 2009

Madison is still in hospital on Ward 112 as the other swine flu swabs came back to confirm she definitely has it. She won’t be allowed back on Ward 110 until she is symptom free. She is really poorly at the moment with it and has just started with more of the symptoms. She’s on Tamiflu still but had to go back on 1st line antibiotics yesterday as she spiked temperatures above 38. She is also neutropenic so has no immune system to fight it. She is being recanulated every day as they keep tissuing so her little hands and foot are black and blue. The doctors have decided they want to do a long line as she’s running out of veins to use. She still has c diff which is giving her horrendous diarrhea meaning her weight is dropping and she also has septic tonsillitis still.

Things at the moment are rough and its horrible being in isolation. I’m doing good and coping really well with all this, however i really miss my children as they aren’t allowed to visit. We are banned from any visiting at the moment.

Let’s keep hoping and praying she gets better real soon so we can have some fun. I’ll update again soon. Our love to you all xxxxx

Update 21st September 2009

Just a quick update to let you know Madison is in hospital and has been since last Wednesday night. She has got a bad throat and cough but is doing ok.

We will be staying at the hospital until we get more support at home as things are very difficult for me. I have been hiding behind a false smile pretending to cope alone, but can no longer carry on as it has made me ill too.

Update 15th September 2009

Sorry it has been a while since I last updated but a lot has been happening.

Madison has been back in hospital as the pain got really bad. They have started her on ketamine and we seem to have the pain under good control now.

CONGATULATIONS to Madison as she started school on Monday. She only goes for an hour as she gets very tired, but we are so proud to see Madison reach this milestone.

Madison is at home with us now and won’t be going back to the hospital until needs be. We are hoping to have lots of good times with her.

I’ll update again really soon.

We would also like to say a big thank you to Margaret for the lovely gifts you sent to us.

Update 3rd September 2009

Madi is going back into hospital to start Ketamine again as she has had a bad couple of days with pain. Last night she was hallucinating and tripping really badly for hours due to medication, there wasn’t anything to reverse it so we had to just ride it out.

Update 29th August 2009

Madison is back home now. She’s doing ok but is declining quickly.

It’s her birthday tomorrow, thank you everyone for her post, she’s going have an amazing time opening it all. I will email some pictures to Viks.

Your support has been amazing; I’ve read Madi all your messages and she listened with a smile on her face. We are going to print all her messages off as keepsakes for her.

The doctor came see me yesterday; we are living on borrowed time now and we could lose Madi anytime as her breathing is bad when asleep. The oxygen will help for a small time.

I’ll try update when i can. Please forgive me if i can’t too often, Post Pals are in my thoughts, but it is difficult for me now xxxx

Update 20th August 2009

Just to let you know we made it to Disneyland Paris with Madison. Despite being in pain she had a fantastic time and it’s a memory that will never die 4 us.

She is ok but on lots of medicines now. It is unlikely that the etoposide chemo is working to slow the cancer down as she has swelling in her back now too.

Will keep you updated as often as i can and thank you for all the post she has been sent.

Update 24th July 2009 (evening)

Madi had her scan and the results confirmed the tumour is growing. Madi will only have a few months left to live and we are devastated.

Update 24th July 2009 (morning)

Sorry it has taken me a while to update but Madison is still in hospital.

Last week she was thought to have swine flu so had to have a week of tamiflu. Luckily the tests were negative.

Madison is experiencing severe pain now and is on very high doses of pain relief. She has to be sedated when the pain gets really bad. She had a blood transfusion in the early hours of Wednesday morning as her blood pressure and hb dropped very low. Her resps and sats drop quite low too and the doctors warned me that she could stop breathing any time.

Madison is having a big scan under GA at 4pm today to see what is going on in her little body. We are hoping to have some indication tonight which will tell us what the future holds, although the full reports will be early next week.

Madison is very unwell and getting weaker. I’ll update again later when we know more.

Love to you all and thank you for all your lovely messages.

Update 3rd July 2009

Madi was taken poorly on Wednesday morning and was kept in hospital. She is in a lot of pain and has a new lump at the front of her pelvis. After her scan it was confirmed that it as another tumour and the cancer has spread. Madison is still very poorly and on high dose morphine which they are changing to fentonal today. We are unfortunately going to loose Madison but do not have a time span as yet. She will be rescanned over the next 2 weeks to see how rapid it is growing. I’m sorry to have to tell you this. As you can imagine, we are heart broken and completely devastated.

Update 15th June 2009

Madison is in todays Sentinel paper.

Update 4th June 2009

Madison is still requiring hospital treatment for oxygen management as she still has a collapsed lung caused by pneumonia. She has had a brain, lung, and full body scan to check for any spread. We had the results back and all the scans were clear, so we now know we are only dealing with the cancer that has returned to the pelvis. Lauren, Madison, and I went to Treetops last week until Saturday, then returned back to the hospital.

Madi went to Birmingham on Monday at 7am to have a central line refitted as the doctors are keen to restart chemo as soon as possible. The next few months are going to be really difficult as we know the chemo is going to make Madison very ill. This is the only chance we have though so i’m preparing myself for whatever it takes. Madi will lose her beautiful hair again, so if anybody wants to buy gifts then please do join us in our summer hat collection.

On Monday Madi was seen by a few doctors and then taken to the surgical ward. She was put to sleep in theatre and had her new central line fitted. She was very brave and did really well. Her consultant then came to see us and explained that Madison will have 2 new chemos starting on Monday for 5 days, then 21 days off, then another 5 days chemo. After the 6 weeks she will be rescanned, they will do a full body scan, bone scan, lung scan, and brain scan, to see if there is any latest spread. She will also have a repeat MRI of the hip/pelvis where the tumour has returned to. If there is no change to the tumour or any spread, then treatment will be stopped. If there is an improvement to the tumour and no spread, then they are going to plan surgery. This surgery will be very major surgery to remove the leftside of the pelvis. It will be a very long and complicated operation and will leave Madison fully disabled and will cause later problems to operate on. We also have to concider if she will be strong enough to undergo the operation and also consider the cancer returning to another location once the pelvis has been removed. It is going to be a very hard meeting in approximately 6 weeks time. I will keep you informed as much as i can.

Love to you all xxxx

Update 21st May 2009

We went to Birmingham today about Madison’s scan results and the results from her last scan were devastating. Her cancer has returned and the prognosis is very poor. She’s having a lung and chest scan tomorrow to see if it has spread and a body scan nxt week. She will go back to Birmingham in 7/10 days to have a central line put in again and if there’s no spread they are going to start chemo again, although she will only have a 1% chance of it working. If it has spread then they are going to start pallative care chemo. I’ll update as we get more info but unfortunately things are looking very grim.

I’m so sorry to have to tell you this news. The family and myself are absolutely devastated, but i will fight this with her all the way! Please keep praying that 1% chance will be Madi.

Update 20th May 2009

Madison was rushed back into hospital in the early hours of Friday morning following 6 fits and a high temperature. She is being treated for viral meningitus and also has pneumonia. She is really unwell at the moment and is on oxygen. She’s had lots of scans done and an EEG which we are waiting for the results of. We hope they won’t be too long.

Update 26th April 2009

Sorry it has been a while since i last updated but Madison has been back in hospital for a while. We are home tonight on ward leave but have to return at 9am in the morning. Madison had a very nasty infection in her hickman line (candida) which then spread to her blood stream and she went completely off her legs again and was in agony. They have now got her on a level amount of morphine and painkillers. She managed to stand again yesterday and walk a bit today after having some steroids. They are now concerned the infection has gone into her hip bone causing septic arthritis so will be doing an mri scan really soon. She has been a lot better since they removed the hickman line last Saturday as an emergency and luckily we have the pain under control now. She is still on antibiotics at the moment and will be for a couple of weeks yet.

Today we took her to the pub for lunch then shopping and she loved it! So did i!

Thank you for my growing egg and my sisters say thank you too for theirs. We will have fun seeing whose grows the fastest and will take some pictures.

Take care and love to you all xxxx

Update 27th March 2009

Madison and family will be on Central News tonight at 6pm. Look out for your post again!

Update 24th March 2009

Unfortunately Madison continued to be unwell last week and had to be admitted to hospital on Friday. Her temperature shot up and she was really unwell. She then had a swelling come up on her left cheek. She had an ultrasound scan and it showed a mass but they are hoping it is part of the infection she has, as at the moment she has a nasty blood infection.

Today her left foot and leg started to swell too so they took her for an x-ray and again it is infection attacking her weak spots. She came home tonight but has got to have daily ivf antibiotics by the community team. She’s not too bad, just a bit sleepier than usual. She’s going back in on Friday morning for an mri scan under general anaesthetic. They are going to scan her head, face, leg and foot, to make sure there’s nothing nasty there.

I will keep you updated as we know more xxxx

Update 16th March 2009

Madison will be in The Sentinel newspaper tomorrow (Tuesday 17th March) so don’t forget to buy your copy or log on to www.thisisthesentinel.co.uk

We are doing a video tomorrow that you will be able to see on The Sentinel site and the latest news page on Post Pals.

We have done lots of celebrating and are starting to enjoy life again!

Update 12th March 2009

We have had a surprise phone call from the hospital. We had Madison’s LP results back and she’s now clear. MADISON IS CANCER FREE NOW!!!! She did it, she beat it!!!!

We have been the hospital today and they have stopped all treatment. They are hoping to take her wigglies out in approx 6 weeks, she will have fortnightly check ups, and will be closely monitored to check nothing comes back. Let’s pray it stays away!!!! We are over the moon and will be arranging a big party at a later date. We hope you will all raise your glass to Madison to congratulate her.

Thanks for all the support and I’ll update again soon to let you know how she’s getting on. Love to you all xxxxx

Update 3rd March 2009

We have been to the hospital today for Madison’s occupational therapy appointment. The doctor was lovely – he put a plaster cast on Madison’s leg and she loved it, she even bore the pain of putting her ankle at 90 degrees. She got to pick some designs too for her new splints and she’s having a butterfly design to wear during he day and a red with teddies on for night times. Madison has got to wear a splint on her left leg as the cancer and the chemo and the radiotherapy have killed the muscle and tendons and her main sciatic nerve is damaged, so it is important to wear a splint to help her leg develop again if at all possible. If this doesn’t work then Madison could be looking at lots of operations and a lot of time in real plaster cast!

After the appointment we went to the ward to have her bloods taken. They are really good and her infection markers are low too which is very reassuring. I had a long chat with the doctor too and he made things a lot clearer.

Madison has two lesions on the membrane of her brain which suggests viral meningitis has been a complication. The LP she’s having on Thursday is to determine which type! They are also going to test her salts to see if it’s another tumour site, but think it is unlikely the marking in her leg is still showing some. It could also be showing bruising and swelling from the chemo and radiotherapy. They say there is no spread and are happy with her. They may have to change her chemo again but they will do what’s best for Madison pending the LP results. The doctor said he hasn’t said the words remission because he doesn’t believe she is until 5 years of no change! Madison is doing well and isn’t facing a bad prognosis but a good one! If it comes back they will decide what to with it and then treat it however they can. He explained that cancer never really goes away and it is finding a way of controlling it until the tumours don’t come back. I’ll keep you updated as to what they find after the LP on Thursday.
My love and thanks for your support, without your love and support I’d find it hard to go on. Many, many thanks. Keep smiling, praying, and being happy. Live each day happy, you never know do u??? xxxxxx

Update 1st March 2009

Hi there everyone, my head is a bit clearer now as I’ve had a talk with Madison’s oncology nurse.

When Madison was in hospital a few weeks back she was very poorly, she was having lots of vacant episodes and at times was not with us. The doctors did a chest x-ray and it was really nasty so they treated her for pneumonia. However, it wasn’t just pneumonia she had, she also had viral meningitis. When they did her remission scan they also did a brain scan and it has showed up 2 shadows on her brain. They are going to do a lumber puncture to see if it is the meningitis that has caused it or if it is something new. There is no obvious evidence of any large tumours but it does need to be investigated. On the MRI scan Madison had on her pelvis there is still something showing up, but again there is no large tumour or evidence of any extra growth and so this is why they will not give Madison her remission, as the scans were not all clear. She will continue on the chemo she’s on for approximately 12 months and she will have scans regularly to make sure there’s no change. The doctors are also going to keep a very close eye on any new symptoms. Madison will not have the all clear until the scans have showed no further growths over the next 5 years. We have just got to keep fighting this and pray the lumber puncture results are better news.

Thank you to everyone for their continued support at this hard time. Keep believing, keep praying and keep smiling xxxx

Update 24th February 2009

We had Madison’s results yesterday evening and Madison is not in remission. The doctors have also said from the brain scan that it is not pneumonia we are dealing with and is viral meningitis.

I am having a meeting with the doctors this morning so hopefully we will know more later today.

Update 15th February 2009

Madison is back in hospital with pneumonia after having a massive fit and a storming temperature. She’s on IVF antibiotics and oxygen but responding ok. She’s still having lots of absences and is going to have an EEG. She’s very poorly but the doctors are sure she will pull through.

Megan says thank you for her birthday cards, she had a good day even though she had to spend it at the hospital with us because of her sister.

Love and best wishes to you all as we all pray for Madison’s recovery. God bless xxxx

Update 31st January 2009

Hi everyone, sorry we haven’t had chance to update for a while but Madison’s eldest sister (Lauren) has been in hospital for 2 weeks. She has a twisted ovary that is in the wrong place and a large cyst in it. She is having an operation on 19th February.

Madison is still doing really well and is getting stronger each day. She has a cold and bad chest at the moment but is doing well with it as luckily it’s just viral.

Thank you for the cards and gifts that have been sent, your kindness is much appreciated. Best wishes to everyone and big hugs xxx

Update 28th December 2008

On Christmas Eve Madison went for chemo at the hospital and we got her results. Unfortunately, they could not give her remission as the scans she had done showed too much swelling from the radiotherapy. She will be rescanned in February when everything has settled down. So the scan results were inconclusive. Then later on Christmas Eve, Madison was rushed in to hospital with a raging temp of 40.8. She came home at 12 o’clock Christmas Day on penicillin for tonsillitis. At 7pm on Christmas Day we had to take her back in as the hospital rang to say her line was infected. On Boxing Day we came home again and at10pm we went back in for treatment.

At the moment Madison isn’t too bad, her levels have dropped and her line has staph in both lumens, so she is being treated at home with iv antibiotics and we are hoping to have New Year at home.

Madison would like to say a very big thank you to her elf as she loved her presents and thanks also to everyone else who sent her a gift. Her sisters were very pleased with their presents and say a big thank you as well.

We hope you have all had a fab Christmas – the best part of our Christmas was going to Lapland as it was like a fairytale come true and we were in it!

Happy New Year wishes to you and our love and very best wishes to each and every one of you.

Update 23rd December 2008

Merry Christmas to you all! I have just come back from Lapland where i have been for 4 days with mummy, nanna and my sisters. We have had the most amazing time ever and we met Santa and i got a very special present from him. I have given him my list and he has promised i will get everything on it! So will mummy and my sisters too! I have told him about all you special boys and girls and he will be looking on here tomorrow and making sure he comes to your house! How cool is that?!

Well, to all my friends on here, have the best Christmas ever! To all the staff and elves and reindeers, have a very happy Christmas and a very happy New Year. I’ll be posting on Christmas day as i get my results from my post radiotherapy scan and am praying for my remission… wish me some Christmas luck!

Update 15th December 2008

Hello to all my friends! I’d like to say a very big thank you for all my letters, cards and presents that my sisters and i have received. We have put our Christmas presents under our tree ready to open Christmas morning and we will take some photos of us opening them and send them in.

I have been quite well the last few weeks although the chemo upsets my tummy! I am going to Birmingham on Thursday for my post radiotherapy scan and mummy is praying that my cancer has all gone. I hope your Christmas wish comes true mummy!! We should know the results very soon after Christmas.

We are going to Lapland on Saturday and we are all really excited so if we don’t get chance to post again we would all like to say happy Christmas to you and hope Santa brings you everything you wish for! Lots of love and big Christmas kisses, Madison and family x

Update 26th November 2008

Well done Post Pals on your award, it’s truly deserved.

Thank you again to everyone who has sent me mail and gifts, you have really made me smile.

I am now having maintenance chemo and i have been having it for a week now. I’m neutropenic again but mummy is making sure nobody infectious is coming around me, although it’s hard because we like visitors and normal life!

I went shopping with mummy last week and loved it; i even got to pick some of my Santa presents! I can’t wait to go to Lapland in December and i thank mummy for getting this dream together. I love you mummy and love all my new friends on here, lots of you have made me smile.

Well i need to go to sleep now but i will sit on mummy’s knee again soon to update you all. Mummy has to help me type because I’m not quite old enough yet to do it on my own. I am old enough though to tell her what to say and all i can say is thank you. My love and a big kiss to you all, Madison xxxxxxxxxx

Update 8th November 2008

Hi everyone i hope you are all well.

I have just come home from hospital after spending another month in there. I have had 6 weeks of radiotherapy but got a line infection so had to go in to hospital for some antibiotics to help me get better. I then got a really bad burn from the radiotherapy on my bum! I am ok now but I’m tired and sore and I’m neutropenic so need some TLC from mummy which i never go short of!

Thank you for the cards i have had since being in hospital… i will send you all a Christmas card very soon and will write back to the lovely letters i have received as soon as a i can.

I’m in Take A Break magazine this week (issue 46) if you want to read about me.

Story written 2010

Lewis was diagnosed with High Risk Neuroblastoma, MYCN Amplification, on 5th June 2008 at only 8 months old. He had several tumours in his abdomen, shoulder, neck and face and initially underwent intensive chemotherapy, surgery, and high dose chemotherapy and finally a course of oral drugs given at home for 6 months. Lewis’ scans in February 2009 showed no evidence of disease and this was wonderful news but sadly it did not last and in May 2009 Lewis relapsed.

Lewis started another course of different chemotherapy drugs and showed a good response; although was extremely poorly after each round. The treatment was shrinking the tumour but it hadn’t cleared it totally and he still had disease in his bone marrow.

Lewis had been accepted for a type of radiation treatment called MIBG in London, but this treatment needed stem cell rescue afterwards; and Lewis only had half the amount of stem cells needed. He was put on yet another combination of chemotherapy drugs to try and clear his marrow so he could harvest more stem cells.

Finally, Lewis cleared his marrow after 2 rounds of the new drugs and after 3 attempts managed to get just enough stem cells needed for the treatment in London. However, it also came to light that the tumour in his head had not responded to the new drugs and had progressed considerably. He still went to London and had half of the MiBG treatment; confined in a lead lined room for over two weeks. More scans in London discovered that the tumour in his head was now pushing onto his brain and they were concerned that the treatment would swell and cause Lewis to fit, so he was put on high dose steroids to counteract this. It was also decided that he would not receive the rest of the MIBG treatment and he would be transferred back to Birmingham for external radiotherapy to his brain and spine as they felt this would benefit him more.

So this is where Lewis’ journey has brought him so far; he is due to start 6 weeks of Radiotherapy in May 2010 going under general anaesthetic every day. It is almost 2 years since diagnosis and Lewis continues to be such a loving and cheeky little boy and brings joy to everyone who meets him.

Family update January 2014

Georgia has just started a new school and seems a lot more settled so we think it is now the right time for her to move on from Post Pals. Georgia has so enjoyed receiving her post and I know she is extremely grateful to everyone who has ever written or sent her gifts, it has very much helped her.

We will always be very grateful to Post Pals for what they have done to help our family. Thank you for everything!

Family update 2nd September 2011

We would really like to thank Post Pals and everyone who has sent Georgia post in the past 12 months since Lewis died; Wendy, Jenny, Steph, Sarah, Jodie M and of course Dottie, just to name a few. Georgia gets an awful lot of comfort from her post and she is always so excited too when someone writes to her.

The last 12 months have been extremely tough for us as a family; Stuart was made redundant a month after Lewis passed away. We were trying to come to terms with Lewis’ death but then we had the added stress losing all of our income. Stuart took almost 9 months to secure another position, and of course that time has put such a tremendous strain on us not only financially, but emotionally too. We had to cut back on everything that wasn’t a necessity which is extremely difficult when you have a 7 year old who doesn’t really understand why she can’t have the things she wants on top of everything else she is trying to cope with.

Georgia has had to deal with so much over the past 3 years; it has certainly not been easy for her. It is great for her that we are a family unit again without stays away from each other in hospital, but we do see how very insecure she has become. Georgia talks about Lewis all the time, everything she writes about, draws about and talks about is Lewis, she misses him terribly, as do we all.

Post Pals has been an absolutely key part in keeping Georgia feel so special after everything she has been through and I know how much it means to her to still receive the letters that really do put a smile on her face and make her feel less isolated.

Thank you again to everyone who has supported us in the last year. Vikki and the team at Post Pals are truly amazing and what they do for our children is beyond words.

Thank you – Gayle – Georgia/Lewis’ Mom xx

Update 12th July 2010

Firstly I must apologise for taking so long to send this update.

This last week has been extremely emotional for us as a family; we have walked a long journey with our brave little man and although many of you now already know, it breaks my heart to tell you that Lewis passed away last Saturday 3rd July.

Lewis’ journey had taken us through some great highs and almost as many lows, but he battled on without a whimper and always with a smile. Unfortunately, Lewis’ cancer had spread more than we had imagined and even though radiotherapy had shrunk the tumour in his head, the Neuroblastoma had spread to his liver and bone marrow.

The last week in hospital brought up all of these issues; presenting themselves in various ways. Lewis had an internal bleed and 3 days before he died had to have the crash team out to him as he had lost so much blood; he spent his last days in intensive care but it was here that we were told that to cure one problem it would cause another and the doctors were being backed into a corner.

Lewis was peaceful and saw his little sister Georgia the night before, she read him a story and he opened his eyes to see her, those memories she will never forget. We were told by Saturday morning his liver, kidneys and heart were failing; there was nothing more they could do and “Lewis would die today”. We had hours so I held in him in my arms for the last time and he slipped away so peacefully.

May he have no more suffering now and although he lost his battle his spirit never stopped fighting.

Thank you for supporting us in our journey, and for your lovely comments that have kept us going along the way.

Gayle (Lewis’ mom).

Update 3rd July 2010

I’m very sad to say that Lewis passed away in his mother’s arms this afternoon at 1pm.

Update 1st July 2010

Lewis took a turn for the worse last night, we had to call crash team and we were loosing him, but he’s now stable and in ICU in fantastic hands. He’s ok so please keep positive for him!

Update 30th May 2010

Lewis is half way through his radiotherapy and so far is doing very well. He is coping extremely well with the treatment and the doctors are amazed with him at this point. They admitted that they didn’t expect him to get this far into the treatment because they thought he may have a seizure, but Lewis is proving them all wrong (touch wood!) and we are seeing small subtle changes for the good each week. We are home at the moment but have been told that we may need to go back into hospital towards the end of his treatment for monitoring again.

We are so overwhelmed at the cards Lewis has received this month, and the time, detail and love that has gone in to making beautiful personalised hand made cards for him. He loves me sitting down and reading them all to him. Thank you – it means so much that you are all thinking of him and sending positive thoughts, it really helps. We have received some wonderful letters, mainly from children, and it is lovely that they have taken the time to write to Lewis, he really does love to listen to me reading them out and we can only say thank you so much. Thank you for all the pictures too; there has been so much effort in every one. Wow, what can we say, Lewis has received some fabulous gifts, and he is over the moon with all of them. He has had lots of books and I have to say his favourite was a Postman Pat one – he loves us reading it and he likes to try too. Lewis has had so much fun playing with all his new toys; it has certainly made him smile.