Robin is our beautiful 18-month-old baby boy and back in January, just after his 1st birthday, we recieved the devastating news that he had high-risk MYCN-amplified Neuroblastoma - an extremely rare and aggressive childhood cancer. The cancer, which began in his right adrenal gland had also spread to his abdomen, pelvis, spine and bone marrow.
Since then, our little family has been on a rollercoaster of weekly hospital admissions for eight cycles of high-intensity chemotherapy, a stem cell harvest and a nine-hour operation.
Miraculously, after all his little body has been through, Robin currently has no visible cancer left but unfortunately, his journey doesn't end here. Due to the aggressive nature of high-rish neuroblastoma, Robin needs a course of cutting-edge immunotherapy to help boost his immune system and train it to recognise cancerous cells in the future.
The next treatment step in the UK is to give Robin very high-dose chemotherapy with stem cell transplants. This would mean an 8-week stay (minimum) in hospital where the risks include seizures, fatal infection and fatal liver complications. Long-term, as a result of this treatment, Robin would most certainly be infertile, get a secondary cancer like leukemia, be deaf or have problems with his hearing and have permanent heart, lung and thyroid issues.
As his parents, we simply cannot justify putting him through something that would destroy all his natural defences when there is no guarantee it would work long-term and because it would definitely severely harm him. Robin's immune system is currently in great shape - he hasn't been ill once during his treatment and is eating very well (just like his daddy!)
Thankfully, in the US, at Memorial Sloan Kettering Cancer Centre and in Barcelona, this damaging high-dose treatment is not systematically given to babies like Robin who have no visible cancer cells and instead he would begin with their pioneering immunotherapy treatment, often including a specialised vaccine, which would help his body to recognise any microscopic cancer cells and support his immune system to prevent relapse in later life. Immunotherapy is only available in the UK to children who have received high-dose "consolidation" chemotherapy, even in cases where there is no detectable cancer.
This is why we have started this CrowdFunder - we urgently need to raise the cost of Robin's treatment overseas - the treatment that we believe will give him the absolute best chance of a long, healthy and hospital-free life.
Any support you are able to give will mean the world to us as we fight for Robin's future. Aside from all he has been through, Robin is a typical (not quite) toddler: he is talking (his first word was "no"!); he enjoys singing, playing the drums, jazz (not surprising for those of you who know his dad!) Robin loves his older brothers (especially when they're making "fart noises"), dogs, croissants, shouting at buses and most of all reading books (not surprising for those of you who know me!)
Thank you.