Welcome to T4Toby!
T4Toby is a trust set-up to help fund critical treatment required for Toby Cunliffe who was tragically diagnosed with a Type 4 Brain Tumour earlier this year. Toby’s treatment based on an established protocol was to have a mix of Chemo and Radiation Therapies over a 12 month period. During the process of reviewing his treatment the medical team in the UK agreed that if they had access to Proton Therapy, a very specific and targeted form of radiation treatment which was available in a number of other countries, they would have given it Toby. With this in mind Toby’s parents and many friends went out and raised the funds necessary for his treatment.
This website tells the story of how a small number of unbelievably generous people applied their minds to raising funds and sending Toby to Boston USA, where he was treated with Proton Therapy. While there were a number of other places in the world that offered the treatment no other medical team had the experience of Boston in treating Toby’s particular Tumour.
With the achievement of the primary objectives of the trust, ie treating Toby in America, the Trustees have agreed to keep the fund open until later in 2011. To date the fund has raised over £185,000 pounds and paid out £140,000 towards medical and trustee approved other essential costs. With the possibility that Toby will need further treatment the fund is being maintained. Any surplus funds will be distributed in-line with the donors requests and the balance going to the Queens Medical Center in Nottingham and the Samantha Dickinson Brain Tumour Trust, supporting the development of a Proton Therapy Center in the UK. Don’t forget to ask your MP why we don’t have such a facility in the UK.
TOBY’S LATEST NEWS January 2011-November 2011
Firstly I need to apologise for the lack of updates in the diary. It’s a strange process dealing with Toby and his issues. The great learning for us as a family is that although things look bleak from time to time we have to get on with life – which is what Toby has done.
In July Toby had another MRI which he passes with flying colours. I guess sometimes ones natural enthusiasm takes over as I ask the Professor if we can release some funds from Toby’s trust for some other good causes. He brings the family down to earth by indicating Toby is not clear and may need other supporting treatment. Almost straight away after this we receive news that Toby’s Pituitary gland has been fried and he will have some real developmental and growth issues. One of our concerns being that hormone treatment can stimulate tumor growth. We get in touch with our American contacts in Boston who give us reassurance however once again we may have to make some difficult decisions. In the meantime Toby is not growing and as a 12 year old size is very important and we presently have to deal with his concerns and worries, especially as some of his school friends are well over one foot taller.
Toby will have his next set of tests in December. As part of our next visit we will be working with the Endocrinology team as we look to resolve some of the issues that the treatment has created. Fingers crossed.
Who is Toby Cunliffe
Toby Cunliffe is typical 10 year old boy; he is into everything that can possibly be done. He has a brown belt in karate, plays guitar remarkably well and loves all ball sports. Toby is an outside person preferring to make dens, ride bikes and horses and go crayfish fishing rather than sitting in front of a computer screen. He and his sisters love bird watching and his favorite bird is the red kite, hence the logo which was drawn by him. With loads of fantastic friends he did not have a care in the world until he was diagnosed with his tumour.