C/O 81 Faraday Drive
Milton Keynes
MK5 7HQ
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Nia S's Parents/Guardians

Corinna

Nia S's Siblings

Finn 23/06/2008 likes Special Agent Ozo, Mickey Mouse clubhouse, simple puzzles, trains, cars, playing outside.

Nia S's Interests

Likes nail art, fashion, arts and crafts, making cards and jewellery, science experiments, gardening (she started growing a few vegetable plants in the garden), reading, daydreaming.

Nia S's Favourite Colour

lime green, all blues, pink.

Is Nia S able to read?

Yes

Is Nia S able to use hands?

Yes

Is Nia S visually/hearing impaired?

No

Does Nia S suffer from any developmental delay?

No

Story written 2010

Nia was diagnosed on March 30th 2008 with Acute Lymphoblastic Leukaemia. After the initial month of treatment we found out that she had a very aggressive and rare type with Philadelphia positive chromosome. We were told the only chance of cure would be aggressive high dose chemo followed by a bone marrow transplant. Nia's Mum, Corinna, was pregnant with Nia's younger brother, Finn, at the time so there was the big hope that Finn may be a potential donor (there is a 25% chance of a sibling being a match). Unfortunately he was not a match and an unrelated 10/10 donor was found.

After a lot of ups and downs, and on the third attempt, Nia received her bone marrow transplant on December 5th 2008 and suffered lots of complications post transplant. She was allowed home on March 31st 2009 - nearly 1 year to the day after original diagnosis.

Nia had a good recovery post transplant and started full time school again in January 2010 - nearly 20 months after leaving school. She went straight back into her old class, having missed all of Year 4.

We then had the devastating news on April 30th 2010 - Nia relapsed and is now undergoing further intense chemo and has not been out of hospital since May 1st. Her biggest dream is to be home for her birthday on June 18th in 10 days time. 

Nia was also born with a very rare heart condition called ALCAPA which was only found when she was 10 months old. She underwent 2 open heart surgeries in 2001 and 2002. Both illnesses are extremely rare (about 2-3 cases in the UK a year) and are not related - so a chance of a child having both is nil - she is truly unique and we hope she will make it through this extreme challenge as well.

Update 24th May 2011

The last few months we have been trying to settle into a routine at home which is always difficult after months in hospital and lots of ups and downs with Nia's blood count. Nia is now on a 24 month maintenance chemo programme - after the first 6 months we didn’t achieve the level of chemo she should have - it feels like a dance - a few steps forward (adding/increasing chemo), then gigantic leaps backwards (stopping all chemo due to her blood count crashing). However, she managed to go to school a bit in early May (after over a year out again), which she enjoyed, but understandably was also very nervous. Her hair is coming back a bit (still quite short), and she enjoys wearing nice hair bands and bits that make her look more like a girl... the worst is when people mistake her as a boy (even when she is wearing girlish clothes - you wont believe how ignorant a lot of people are). She is still on her 4 weekly high dose steroid pulses for 5 days, which she really struggles with and we seem to plan our lives around those days since she usually is not able to do anything.

She enjoys playing with her little brother Finn, who is now nearly 3 and such a funny little fellow. Similar to Nia, he spent most of his life isolated from other children, since we did not want to risk him getting infections and spreading them to Nia. He made a little friend at the playground that he sometimes plays with though and enjoys it so much. So hopefully if Nia settles into school and her count stays more stable, he can start preschool in September.

Both of them love getting mail and whenever they hear the flap of the mail box in the morning they nearly race to the door to see if it is something for them. Finn can now identify all of our names and hands around whose mail it is (if Nia did not beat him to it).

Update 3rd February 2011

Thank you for all Nia’s post over Christmas! Post Pals is such a big part of Nia's life now and definitely brightens up her day. Thank you for all your wonderful work and dedication.

Update 22nd November 2010

Nia has now finished her high dose chemo and is getting at least 2 years of maintenance. So we should be home a lot more, but since her bone marrow is so weak, just the first oral chemo made her really neutropenic and crashed her count (so we’ve had to stop it already). However there is no guidance of how much chemo/what combination chemo is best in Nia's case - all the treatment plans after relapse are gearing towards a bone marrow transplant, but since she already had one, we just have to hope that keeping her on enough chemo to not let her relapse again. She is still however not allowed back in school (maybe spring 2011) and it is difficult to keep her happy and cheerful at home. She has monthly steroid pulses for 5 days which make her feel really miserable, make her diabetic and often make her wheel chair bound, so we are trying to make the most out of every day when she feels well enough.

Nia is really looking forward to Christmas, and is making lots of plans on how to decorate our house - the last two years we have not decorated much, in 2009 we even had a Eastmas (Christmas at Easter) since she was in hospital over the Christmas period - so fingers crossed we will be at home this year!

We are still in Oxford at least once a week and Nia is always excited to get some post when we go there since we usually spend most of the day in hospital. Thanks again for all your kind cards, letters and presents - this month Nia got a bunch of hand made cards from an English class in Slovenia, which was so lovely.

Update 30th September 2010

Sorry for not updating for a while - Nia is currently recovering from another high dose round of chemo, which would have kept her in hospital, but since luckily there were no beds available and Nia was relatively well, we spend a lot of time isolated at home and in and out of our local hospital. I am currently giving her IV antibiotics three times a day since she had a nasty line infection, but is recovering now. If her count recovers, the next round of high dose chemo is due to start next Wednesday. We hope to be back home by Halloween at the latest since this is Nia's favourite holiday and she really hopes to have a little party at home with some of her friends and dress up.

Nia loves all the mail she is getting, and especially some of the regulars that she gets to know and feel like they are part of our family. Thanks especially to Rosie, Mandy, Gracie and Charlotte - just to name a few - you all definitely achieve smiles on my girl's face and magically always seem to time your post when Nia really needs cheering up. We had a very low time with two of her oncology friends dying - a lot to deal with emotionally for a 10 year old. So thank you so much to all of you!

Update 5th August 2010

Nia is currently recovering from another high dose chemo round, but since her bone marrow is weak due to the previous transplant, the recovery always takes a lot longer than expected. We are still not sure if she is going for a second bone marrow transplant (which would not be done in the UK) or if we are going with more high dose chemo and targeted therapy.

Nia loves getting her mail, and she has a few people that write very regularly which is lovely since she gets to know them. It is particularly nice that some teenagers are also writing - for a 10 year old that is pretty cool. She got lovely mail from Gracie's friends who had a sleep over and I think she felt a bit like she was part of it all. I am really sorry we do not get the chance to write back very often, and sometimes she gets nice gifts (recently a crystal growing kit) that it was unclear from whom. Finn recently got a card as well and was very proud of it - he is so used to Nia getting mail, and he was running around all day hugging his card (with a boat on it). You all definitely make my girl smile - which is priceless for me. 

Update 6th July 2010

We have a mixed bag of news - good news was that after her induction, the bone marrow cleared and her donor cells came back, but then the bad news was that cells are back in the CNS (central nervous system) which now requires more intense treatment. She has at least two big blocks of chemo in front of her - one that is 7 weeks, the next that it 9 weeks - and with Nia being Nia, most of those blocks will take longer as well as radiotherapy.

I am sorry that we cannot thank all of you personally for your kind letters and cards - Nia loves getting her mail nearly every day - she copies all the email addresses with the intention to write back, but so far has not had the energy to do so.