Medulloblastoma is not a word I can spell or pronounce 90% of the time, but it’s the first word that comes into mine and my husband’s heads when we wake during the night and first thing each morning ever since our eldest son, Charlie (8), was diagnosed with this just a few weeks ago and we began this unwelcome journey with brain cancer.
Despite the surgery to remove the tumour being successful and no sign of any spread of the disease to his spine, Charlie remains high risk due to the aggressive type of tumour and the sub-category he falls into. Next week he will start 6 weeks of high dose radio therapy to his brain and spine, followed by several months of high dose chemotherapy.
So here we are – on the precipice of an uncertain future – with a few days to go before we embark on the treatment that will see our beautiful, cheeky, happy 8 year old, dosed in radiation and drug therapy in the hope this will cure him of this awful disease. And this has to work. First time. If the cancer returns it’s unlikely it can be treated. Charlie doesn’t fully understand the implications of the treatment or what this could mean for his future, and it’s been a difficult decision to make this private and painful journey so public. But our role as parents is not only to stay as strong and as positive for him as we possibly can, but to give him the best chance of survival and recovery from the effects of the cancer – as well as from the radiation and chemo.
We have supportive families overseas in the UK and NZ but no family here in Australia. We are lucky to have friends providing strong emotional and practical support and much kindness, but it’s a long road and much of the support our children need we cannot outsource to friends or to anyone else. It’s up to us to help Charlie and his younger siblings through this, and to give Charlie the best chance possible and so we want to raise enough money to provide Charlie with the support he needs and deserves through this difficult stage in his life.
Our goal is $25,000 which would allow us to keep paying the rent and bills whilst I take 5 months of unpaid leave from work to care for Charlie once chemotherapy starts in August. Anything over our target would mean I could take more time off and perhaps even pay for longer term support for any late effects he suffers from radiation and chemo therapy. Thank you for reading and please share our story so we can support Charlie through this very difficult time.
Abby & Chris