Seven-year-old Katie Bain from North Shields was just two-days-old when her parents learned she had Down’s syndrome. Katie’s mum, Christine, and dad, Paul, knew that because of her diagnosis she was at increased risk of Leukaemia. But at 20-months-old, after a routine blood test, nothing could prepare them for Katie’s Acute Myeloid Leukaemia (AML) diagnosis.
Katie’s Dad Paul explained her story: “Katie had been unwell with flu-like symptoms but also had tiny spots on her body (petechiae) and swelling of her neck due to inflamed lymph nodes. Katie initially underwent four rounds of chemotherapy lasting six months. She was only allowed home for a few nights in total during this time. Mum and Dad took turns to stay with her and friends and family rallied round. She was declared in remission after the treatment and we went home. However sadly she became unwell three months later and we were told to everyone’s shock that the Leukaemia had returned. Katie had to repeat the chemotherapy, only this time it was also followed with a bone marrow transplant.
The whole experience has been a challenge, fearing the loss of your child, not knowing what to expect, asking ‘why her?’ and dealing with living in a hospital. Christine had to give up work and I took time off work to help care for Katie. She has had hundreds of blood transfusions but worryingly became allergic to these. There is also a constant fear of not finding a bone marrow donor, or that the donor would change their mind. This worry continues until the transplant has started.
The transplant took place on 2nd Feb 2012 and involved us all living ‘in a bubble’ for three months. The bubble was a purpose built room with very strict rules to protect her as she had no immune system during this treatment. Following the transplant we were then slowly allowed to re-introduce Katie to the real world and thankfully received the all clear again. She has remained clear since, although we take each day, week and month as it comes.
The threat of losing your child is something that is very hard to deal with. It is something that stays with you from the day of diagnosis, and never goes away. Every time Katie is poorly you cannot help but fear the worst. I would love to be like 99% of the population who don’t think ‘cancer’ every time their child has a temperature.
While in hospital, we made a lot of new, amazing friends on the ward and they will remain so for life. Sadly we have watched some of them lose their children to cancer and I can’t imagine anything more difficult to face in life.
While in hospital we were told it was very rare for a child with Down’s syndrome to relapse following treatment and that Katie was the only child with Down’s syndrome to have a bone marrow transplant outside of Great Ormond Street, London. In agreeing Katie’s treatment the Newcastle consultants were in regular contact with experts from all over the world.
We first found out about the NECCR from one of Katie’s doctors and at this point I decided to begin fundraising for the charity to help support the clinical trials taking place in the North East that help to develop new therapies to improve survival rates and develop less aggressive forms of treatment. To us this was an easy decision, as throughout Katie’s time at the RVI there is only one thing we clearly wanted and that was a cure.
The biggest reward is simply having Katie with us today, seeing how we have all supported each other through this and how brave she was during the 12 months she was in treatment. She took everything in her stride. She is amazing.”