Bram's Cancer Fight Fund
Donation protected
Our son Bram recently celebrated his 1st birthday. What is supposed to be a happy occasion has turned into a nightmare. Two weeks prior his birthday Bram started vomiting. This became progressively worse. After 10 days he was hospitalised with suspected gastroenteritis. After spending 4 days in hospital and deteriorating even further a CT scan was performed and subsequently a brain tumour was diagnosed. This was the day before his first birthday. We got transferred from East Surrey Hospital to St George Hospital in London. There we got told that the brain tumour Bram was having caused hydrocephalus. His brain fluid could not flow freely and pressure was building up. This required urgent treatment. On Bram’s 1st birthday he was transferred to king’s college hospital in London. That evening instead of playing with birthday presents he underwent lifesaving surgery in which a shunt(drain) got inserted in his head which reroutes his brain fluids. This surgery went well and within days Bram felt a bit better and symptoms disappeared. 4 days after his initial surgery he underwent more surgery. This time to remove the tumour. In an 8 hour operation the medical team successfully removed the whole tumour. Bram is currently recovering from all this and makes a slow but steady progress.
A week later we got the biopsy results and our biggest fears became reality. His brain tumour is an Anaplastic Ependymoma. This is a very rare aggressive, quick spreading cancerous brain tumour. About 30 kids a year get diagnosed with this. Long term survival rate is just about 50 percent. Initially the medical team was proposing to send Bram to the USA for proton beam therapy. However it later became clear that Bram was having quite a few medical issues left, mostly neurological. It has taken time to overcome most of these. So far Bram has had 7 rounds of surgery, with 2 more planned. Because of these issues the medical team has eventually decided that the best and safest way forward for him is to start a 12+ month treatment of chemo. When Bram is stable enough he will be transferred to Great Ormond Street hospital. We expect this currently around the end of June / early July.
Even though the NHS funds Bram’s treatment the costs we will experience are enormous. We need to take unpaid leave from work, have travel expenses, and food and drink expenses and will have to pay for Bram's biggest friend to come along with us, his brother Max. All donations are welcome and will be exclusively used to make sure Bram and Max can be together during this fight to save Bram’s life and they can have the best time possible in these circumstances. Any money left will be donated to causes directly related to Bram’s disease.
A week later we got the biopsy results and our biggest fears became reality. His brain tumour is an Anaplastic Ependymoma. This is a very rare aggressive, quick spreading cancerous brain tumour. About 30 kids a year get diagnosed with this. Long term survival rate is just about 50 percent. Initially the medical team was proposing to send Bram to the USA for proton beam therapy. However it later became clear that Bram was having quite a few medical issues left, mostly neurological. It has taken time to overcome most of these. So far Bram has had 7 rounds of surgery, with 2 more planned. Because of these issues the medical team has eventually decided that the best and safest way forward for him is to start a 12+ month treatment of chemo. When Bram is stable enough he will be transferred to Great Ormond Street hospital. We expect this currently around the end of June / early July.
Even though the NHS funds Bram’s treatment the costs we will experience are enormous. We need to take unpaid leave from work, have travel expenses, and food and drink expenses and will have to pay for Bram's biggest friend to come along with us, his brother Max. All donations are welcome and will be exclusively used to make sure Bram and Max can be together during this fight to save Bram’s life and they can have the best time possible in these circumstances. Any money left will be donated to causes directly related to Bram’s disease.
Organizer
Jeroen Sengers
Organizer
