Skye's family want better brain cancer treatment

Skye Hall with some of the loom bands he has received

Skye Hall with some of the loom bands he has received

First published in News

Parents of a toddler who may have just weeks to live have criticised the lack of research into brain cancer in children.

Andy and Sally Hall, from Abingdon, have set up the charity Blue Skye Thinking in honour of their five-year-old son Skye, who has been battling a brain tumour for a year.

But tragically, the treatment that has helped control the cancer has made Skye sicker than ever. In May he was diagnosed with radionecrosis, where healthy cells in his brain and spinal cord have been damaged by radiation.

Mr Hall, 42, said: “His disease is stable, but it is the side effects of the treatment which are killing him.”

Along with Mrs Hall, 36, he hopes to raise funds for research into less toxic treatments.

Mr Hall, a teacher at Abingdon School, said: “Skye is clearly our primary focus, but what is also of importance to us is that other children afflicted by this horrible disease have access to treatment which is less cruel and less debilitating in nature.”

The charity’s first action is the Loom to the Moon appeal, to try to make the world’s longest loom band – where elastic bands are twisted together to form a chain.

It has more than 9,600 likes on Facebook, and the family have already received more than 6,500 metres of loom band.

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10:22am Sat 23 Aug 14

Man on the Green says...

If the UK had had any "charged particle" facilities (as France, Germany, Italy, Japan and the US all do), CPT could have been tried on Skye, as it is particularly suited where the risks of damage to surrounding tissue are greatest, and has been recognised as especially indicated in children and young people who are much more likely to suffer from radiation damage, both short term, and in the longer run because it is designed to "deposit" the radiation dose almost exclusively in the tumour itself, rather than on the trajectory to and beyond the site as well.

One wonders too whether consideration was given by Skye's doctors to referring him to one of the European charged particle centres, under the reciprocal agreements in place with other EU countries.

Mr Hall is quite right to be calling for more research into brain cancer. Much more needs to be done to bring the UK up to even European averages in terms of cancer diagnosis, treatment, and survival rates. We should be asking why it is that the UK, despite the vast sums we pump into the NHS, and the extraordinary efforts of charity supported research, should have such comparatively poor cancer survival rates. We may need to stop and refocus some of our priorities.

I can only congratulate Skye's parents on their dignity and dedication to making Skye's remaining life as rich and enjoyable as they can, and also for their determination to see that lessons are learnt for the future. That takes real courage and altruism, and I admire them hugely for it. Their efforts will also undoubtedly help Skye through his illness, give him a sense of achievement and personal excitement as he sees what is being done in his name, and out of love and support for him, and perhaps too some comfort in the bleaker moments (for both him and his parents), especially if future treatment options are improved as a result of their campaigning. They are in my thoughts and prayers.

(I should perhaps add that I have no vested interest in CPT, and have no personal agenda in this field.)
If the UK had had any "charged particle" facilities (as France, Germany, Italy, Japan and the US all do), CPT could have been tried on Skye, as it is particularly suited where the risks of damage to surrounding tissue are greatest, and has been recognised as especially indicated in children and young people who are much more likely to suffer from radiation damage, both short term, and in the longer run because it is designed to "deposit" the radiation dose almost exclusively in the tumour itself, rather than on the trajectory to and beyond the site as well. One wonders too whether consideration was given by Skye's doctors to referring him to one of the European charged particle centres, under the reciprocal agreements in place with other EU countries. Mr Hall is quite right to be calling for more research into brain cancer. Much more needs to be done to bring the UK up to even European averages in terms of cancer diagnosis, treatment, and survival rates. We should be asking why it is that the UK, despite the vast sums we pump into the NHS, and the extraordinary efforts of charity supported research, should have such comparatively poor cancer survival rates. We may need to stop and refocus some of our priorities. I can only congratulate Skye's parents on their dignity and dedication to making Skye's remaining life as rich and enjoyable as they can, and also for their determination to see that lessons are learnt for the future. That takes real courage and altruism, and I admire them hugely for it. Their efforts will also undoubtedly help Skye through his illness, give him a sense of achievement and personal excitement as he sees what is being done in his name, and out of love and support for him, and perhaps too some comfort in the bleaker moments (for both him and his parents), especially if future treatment options are improved as a result of their campaigning. They are in my thoughts and prayers. (I should perhaps add that I have no vested interest in CPT, and have no personal agenda in this field.) Man on the Green
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