On the 7th November 2018, our normal world stopped when we were told that our lovely Lila, aged 5, had a large and rare tumour in the middle of her brain. Almost 5 cm across at its widest point, the tumour is benign but is attached to various important structures. Lila will require lifelong hormone replacement therapy and her vision and her memory have also been affected by the tumour.
Lila has had one operation to reduce the pressure in her brain and to remove some of the tumour. It is now felt that the risks of further surgery outweigh the benefits and the safest option is for her to receive a course of proton beam radiotherapy. This is going to take place in the USA and we are extremely lucky that the NHS is funding the cost of the treatment. The treatment will take approximately 9-10 weeks.
However, living expenses both here and in the USA are obviously not covered. Neither of us have worked since Lila’s diagnosis and although Tim’s employers have been very understanding, income is down. Karen is self-employed. Meanwhile the bills still need to be paid.
We also to want to use the money to give Lila a few moments of joy and to forget about her tumour for a little while. It is heartbreaking to watch Lila, who is always so kind and sweet, struggling to cope and to see her hurting and not be able to make it better.
Lila, along with many other children with a serious illness, has had to endure painful and frightening medical procedures that no child should have to experience. Despite this, she has been incredibly brave and cheerful. We want to be able to take her to Walt Disney World, as she is the biggest Star Wars fan, and to let her be a normal, happy 5 year old for a few days.
Any funds surplus to the target will be donated to charity, to fund research. Sadly 500 children are diagnosed with a brain tumour every year in the UK and although 75% of them will survive for at least 5 years, the majority are left with life changing side effects of the tumour and their treatments. Because of their location, even benign tumours can cause significant long term impairment to intellectual and neurological function.
In the UK brain tumours kill more children and adults under 40 than any other cancer. Despite this, less than 2% of the national spend on cancer research is allocated to brain tumours, with only a small proportion of this going specifically to childhood brain tumours (see references below).