The story so far
We are raising money for our son, Luke, who is five years old. He was diagnosed as having Rhabdomyosarcoma, an aggressive tumour, in the middle ear eight weeks ago.
We are currently undergoing intensive chemotherapy, but it is early days and we have no idea whether it is working. Due to the location of Luke\'s tumour, surgery is not an option. It is quite deep into his head and is pushing on and blocking one of the major blood vessels to his brain as well as one of his facial nerves. Although this is in many ways extremely unfortunate, it did mean that the tumour was picked up quite quickly. He was previously a very healthy and active child. As surgery is not possible and radiotherapy may be too risky, due to the damage it would cause to surrounding tissue and structures such as his brain, we have been referred to receive a new type of radiotherapy called proton therapy. This proton therapy is currently not available in the UK and so we are faced with having to travel to Jacksonville in the USA for eight weeks from July to September.
Whilst out there Luke would continue to receive his chemotherapy at one hospital whilst undergoing daily general anaesthetics at another hospital for his proton therapy. All this whilst dealing with the challenges of neutropenia/infections etc. I have been informed that the NHS will fund treatment, travel and accommodation for Luke and the two of us, but that all other costs are down to ourselves. So Luke\'s sister, who is 9, is expected to either be left with family back home, or be paid for by ourselves. This is at an already difficult time financially. Kirstie has lost her income due to being signed off sick to care for Luke and Mark will have to take eight weeks off work as unpaid leave. So the long and short of it is we need to raise quite a substantial sum of money to cover unpaid leave from work, travel expenses for my daughter, passports and living expenses while we are out there as well as bills back home.