Solving Kids Cancer support children and families affected by neuroblastoma, a rare and aggressive form of paediatric cancer. Every year there are around 100 new cases of neuroblastoma, predominantly in children aged 5 and below. SKC provide a range of specialist support services to families affected by neuroblastoma designed to equip them with the knowledge and resources they need to fight this disease and also the support they need afterwards whatever the outcome.
Outside of the treatment and support services they provide and fund, they also fund the ground-breaking neuroblastoma research that is essential to push treatment forward and improve outcomes for children.
Here is the story of one of our clubman, Jacob Bird, and how neuroblastoma affected his family:
In July 2009 my brother Adam was diagnosed with high-risk neuroblastoma. Like the vast majority of neuroblastoma patients Adam had an advanced form of the disease before it was discovered.
Since his diagnosis Adam was cared for by one of the country’s leading paediatric cancer care units at the Royal Marsden hospital in Sutton. During his battle he underwent surgery after surgery, had a hickman line placed in his chest to enable him to undergo 8 months of intensive chemotherapy and an array of other treatments to better his disease. To go with an abundance of pills and other medication to help keep his body functioning normally.
Over the course of Adam’s ongoing battle, we took him to Germany so he could receive treatment not available in the UK. After Germany, things appeared to brighten and a period of normality began, something that had become lost in the seemingly endless hospital visits and treatment plans. Adam managed to return to school for the first time in over 2 year, attended his first colts cricket session and did things most of us take for granted. But this didn’t last forever and it was detected that in Adam’s case the cancer did not respond well enough to treatment. Without being clear of detectable disease Adam cannot move forward to the other stages of treatment. This took us to America for another treatment plan that again isn’t available in the UK. And after 2 visits to Michigan, tests showed that his condition was worsening and any further treatment was no longer an option. His bone marrow remained infected and scans still showed the disease spreading throughout his body.
Over the next months Adam was comfortable and supported by our family. Including a visit to Universal Studios, where he met Tom Felton (Draco Malfoy from Harry Potter), as part of a Rays of Sunshine scheme in June of 2013.
Adam passed away on 11th July 2013 with our family around him.
I was only in Year 6 when Adam was diagnosed, I barely understood that things like cancer existed. My parents did their very best to shield my sister and I from the world we were entering. As I grew up the reality of what was happening was somewhat of a slow burner, I looked at other children my age and wondered why my parents couldn’t be watching me play football or play cricket, but other things had to take precedent. It was not until my dad sat us down and explained that things weren’t going to get better, a conversation I now realise is one that is impossible to have, that the seriousness of what has happened dawned on me.
This is the first time I have ever written my story, but it’s not really my story at all. It is the story of a brave young boy who was not given the opportunity to grow into the man he would have become. He lived everyday to the fullest he could, I can honestly say I never witnessed him bemoan his situation. He always spoke of things he would do when he was better, of things he would become.
Since his passing, my Father, Nick Bird, has become really invested in the research and progressing of treatments for neuroblastoma and is now the trustee for research and advocacy for SKC. And has become a research expert, attending many conferences where new treatments are presented by experts in the field of research. Helping to increase his understanding of where the funding for research needs to be invested to help the most people.
Outside of all this he still continues to raise money for charities like solving kids cancer, most notably completing 4 marathons in 4 months, all under 4 hours in 2017.
In 2019, I will be running the London Marathon in support of Solving Kids Cancer, any support would be greatly appreciated in whatever form that is possible.