The boy next door: living with leukaemia

Want to start the year with a random act of kindness?

Here is my fundraising page http://www.justgiving.com/Jane-Blackmore

I do some daft things sometimes,

My daft thing for 2011 is to run the London marathon, I have run it before, three years ago, but please don’t make the mistake of thinking I am a ‘marathon runner’.  It was one of the hardest things I have ever done the training is intense and nigh on impossible to do with two kids.  Now I have three kids and I find myself pulling on the trainers and starting it again.

As I write this post I am about 32lbs overweight, many thanks to my delightful new baby girl and my gluttonous nature.  I can run about three miles without collapsing in a pool of sweat; I have fourteen weeks to turn my happy soft plump body into a lean mean running machine.

I am doing this for one reason only, to raise money for a much underfunded charity – The Anthony Nolan Trust.

This is why,

I grew up next to a really nice boy, we played together in our gardens in the summer and we both grew up happily.  We didn’t follow any boy next door rules and we married two lovely people and had our first children in the same year.  I had twins; my neighbour had a baby boy who at the age of two was diagnosed with Acute Myeloid Leukaemia.  To watch a small child and their family go through your own worse nightmare is horrendous and to not be able to do anything is worse.  So I started running and many fabulous people sponsored me and joined the Anthony Nolan register to see if they were a match for Seth. 

This year after letting myself get completly runied via pregnancy and eating chocolate I am running again and I am terrified, 26 miles is a long bloody way. 

I wanted to write an emotive post to urge you all to sponsor me but to be honest no one can describe this families journey and the part Anthony Nolan had to play more than Seth’s Dad, so please can I introduce Nathan, dad to three, the boy next door:

In April 2008 Seth was diagnosed with a blood cancer called Acute Myeloid Leukemia. The day after he was diagnosed he started 6 months of Chemotherapy. He was two years old. During his treatment his Consultants carried out tests on the cancer to give an indication about how well the Chemotherapy was likely to work. Unfortunately the results were not good, the Chemotherapy was unlikely to be effective and he needed a stem cell (bone marrow) transplant to give him the best chance of a cure.  

Every one of us has billons of stem cells in the bone marrow inside our bones. These cells which produce all the blood in our body throughout our lives. The transplant aims to remove all of these cells, including the ones which are cancerous and replace them with new stem cells from a closely matching donor. The hospital searched databases worldwide for a donor, they were pretty hopeful that one would be found, however none were.  So without a donor Seth just had the Chemo to rely on.  

At the end of treatment initially the signs were good and we hoped he had got away with the slim chance he was given of the Chemotherapy working.  Sadly in January 2009 his cancer relapsed. He started more Chemotherapy and more searching of databases took place, no living donors had become available but thankfully the Anthony Nolan Trust found a lifeline for him. The stem cells from the umbilical cord of a baby born in Germany were a good enough match for him to have a transplant. The chemotherapy continued for a few more months, ending with a final dose which killed off all of his stem cells and with them we hope the cancer forever. 

 On April the 19th 2009 23ml of blood rich with stem cells, were transplanted into him. This is a difficult point in the transplant process, the chemo had left him very unwell and with none of his own stems cells left to make blood, he relied upon daily blood transfusions for weeks to keep him alive. Eventually we started to see signs of the new stem cells beginning to work, but as they did a common side effect of the transplant also started, Graft vs. Host Disease. His new blood saw his body as a foreign object and began to attack it as if it was a virus. This caused the most horrendous pain, prevented him from eating and damaged his lungs, liver and gut.  He had IV morphine to manage the pain and was fed through a tube into his tummy and IV line for months.  

Very slowly he began to get better and after months in hospital was allowed home.  A year after the transplant he was still unwell, but he finally stopped being fed through the tube and was strong enough to go to playschool again. He has continued to recover and in September this year started school. He still has a few side effects and the time in hospital has left him a little shy compared to other children, but other than that he is a normal, happy little boy. 

If it were not for the kindness of a mother donating her babies umbilical cord and the Anthony Nolan Trust Seth would not be here today. Today there are over 2000 people in the UK who like Seth cannot find a donor. To help these people it’s easy to join the register of donors, all it takes is a sample of spit and if you are lucky enough to be given the chance of saving someone’s life through donating, it’s as easy as giving blood.   

It’s the wrong time of year to ask for money but I am giving it a try anyway, kids shouldn’t be poorly, no family should have to endure what Seth’s did and no child should have to climb the mountain Seth did.  Thanks be that there is a happy ending.  This could be a chance to start 2011 with a kind gesture

This time when I start the marathon I will be running on behalf of a healthy boy but will hopefully have banked enough money to save some more live’s and prevent another family from having an unhappy ending.

Please sponsor me and share this post wherever you can http://www.justgiving.com/Jane-Blackmore

Happy New Year

Jane

xxx