Thanks for taking the time to visit my JustGiving page.

 

Our son Drew was eventually diagnosed with bilateral retinoblastoma (cancer in both eyes) when he was 18months old.
I'd noticed my son’s iris in his right eye was considerably darker than the left and his eye also kept turning inwards. Unfortunately by the time he was diagnosed, the tumour in his right eye was so large it had started travelling down his optic nerve. So the only option the consultant could give us was for his right eye to be completely removed. We were then told he also had a shadow in his left eye. Drew now has 4 tumours in his left eye.
From taking Drew to Moorfields paediatric A&E (thanks to the internet), to just check his eye and the anomalies I had seen,  to removal of his eye, his line being put in and chemo starting was 3 weeks.  I felt numb, everything moved so fast and the huge decisions that I had to make for our son’s sight and life was quite overwhelming. Did we want a Hickman line or portacath for his chemo? You've got 24hrs to decide before you're in Great Ormond street. Words We never knew existed and terminology no parent wants to hear.
Only a month before, the sun was permanently shining and life was good. I had been working, planning our holidays and all our hopes and dreams for our son were limitless - we had a lifetime of things to do and fabulous times to be had.  
Suddenly the world imploded and our black cloud wasn't moving and our limits were becoming more and more apparent. (Even little things like a holiday for him would no more be, just hop on a plane, his insurance is already £980.)
We still have hopes and dreams for our son but the one which is above all others, is that he keeps the full sight of his one remaining eye and the tumours don't and won't win.
Our lives would now be completely different forever. My baby boy now had a very, very long hard road ahead of him and all of this before the age of 2.
Unfortunately with Bi-lateral retinoblastoma he can never be in remission; he will now have cancer for the rest of his life and it will always just be a case of permanently trying to control it.
So lots of frequent visits to the hospital for exploratory procedures under general anaesthetic (for the last 18months it's been every 3weeks) to check if there's any change or more seeds/tumours appear or grow then whichever treatment is necessary is given.  So we never know from one visit to the next if he'll need treatment or not or if he'll lose his sight or not.
If Drew stops responding to his treatment here, there is another treatment which Drew may have to have, but it's only available in America at the moment. It does however come with a huge price tag of £150,000.00.

 

This page is to start to raise the money for proton therapy, should Drew need it.  Should he not need it, then I would like your permission to use some of your donations to fund the specialist equipment Drew will need to help him lead as normal a life as possible, with the remainder to be split between the fabulous charities that have supported and been there for us and to research, to prevent any more children from suffering due to this truly evil and cruel disease.

The reason for starting to raise the money before we know, is that it is a huge amount of money and if we get told he needs to go to America, then time will be of the essence and to start from scratch then, could be too late to save Drew's sight.