FAQ’s

The contact form on the blog, Angel’s email address, and both the facebook accounts of Bev and I have been bombarded with questions regarding proton therapy in light of the Ashya King situation.

I really sympathize with people who are only just discovering proton treatment – imagine how we feel each week sitting in on the presentations discovering things we didn’t even know about cancer, and we hope that Ashya and his family receive the support and medical treatment that he needs. 

I don’t mind answering questions, and have always made these public, however, please do appreciate that I am not a Doctor, Neurosurgeon or Physicist and can only tell you what I know or have seen/had/witnessed an experience of. 

I haven’t put these in any particular order – so sorry if they read messy, and apologies if I’ve skipped over your question, it’s to avoid repeating. 

Was Angel in Hospital in the UK before you went to America? Was she poorly?

Prior to being ‘ill’ which led to her diagnosis in April, Angel had never been ill in her life. Angel became poorly in April (not sleeping at all – she was down to just two hours per night, vomiting, and felt what she describes as pins and needles in her head) Angel was taken to Blackpool Victoria Hospital before being referred to Alder Hey Children s hospital in Liverpool, where she spent 9 days. During this time, as well as her diagnosis, she had surgery to drain a cyst that had developed, and a cannula fitted. 

What type of tumour does Angel have? 

Angel has a Craniofaringioma (pronounce crane-e-o-fringe-oma)

A craniopharyngioma is a benign (noncancerous) tumor arising from small nests of cells near the pituitary gland (a pea sized organ at the bottom of the brain that controls other glands) and the hypothalamus (a small cone-shaped organ connected to the pituitary gland by nerves).

Craniopharyngiomas are rare in children younger than 2 years of age and are most often diagnosed in children aged 5 to 14 years. It is not known what causes these tumors to form.

Did Angel have brain surgery before she had proton beam therapy?

Prior to coming to America, the only surgery Angel has received was in the at Alder Hey to drain the fluid on the developed cyst, and to have the canula fitted. 

Did you know about Proton Beam Therapy before Angel’s brain tumour?

No

Has Angel had chemotherapy? 

No, Angel has not had any form of chemo either in the UK or while we are in America, however, we do know other pediatric patients who are receiving chemotherapy alongside proton beam therapy.

Has having proton removed Angel’s brain tumour? Has the tumour shrunk? Is the tumour still there? Has the tumour grown? Has the cancer spread? Has the proton worked? Will she need more proton?

Angel still has her brain tumour. It was and still is a benign tumour, which means it is a non cancerous mass. Proton beam therapy has broken up the DNA, which in turn will inhibit the cell reproduction (ability to grow) thus preventing the tumour from becoming larger.  At the moment all we know is that Angel will need regular MRI scans and other various tests… I have included some information in this blog post:  – has the proton worked

Where did Angel get her proton beam therapy? Can you have proton beam therapy in the UK? Why did you go to America and not another country in Europe?

Angel has been receiving proton beam therapy at The University of Florida Proton Therapy Institution in Jacksonville. We flew over on the 4th of July. Myself, Angel and her Mum Bev. We came to Jacksonville as that’s what was decided by the team working on Angel’s case. We knew we would either be sent to Jacksonville or Oklahoma for the proton beam therapy as these were the two places they specialize in administering proton beam to pediatric patients. To contact UFPTI use this contact form.

There is only one proton beam therapy center in the UK – and this is for eye tumours. As far as we know a Proton Centre will be built in Manchester in 2018. 

For more information on protons relating to Angel’s treatment, please see the links on this page.

 

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