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Our time in the USA..
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Ross with Sunflowers

What Was Diagnosed

Ross in June 2009 and again in November 2009

An orbital, embryonal Rhabdomyosarcoma. All scans and tests showed the cancer had not spread beyond the initial site. In Ross’s case it is in the ‘orbit’ – the muscle between his eye and the bony socket.

Rhabdomyosarcoma, is a cancer of the muscle tissue. Rhabdomyosarcomas (RMS) account for only approx 5% of childhood cancers. Only 10% of RMS’s are in the orbit. Less than 60 children in the UK are diagnosed with Rhabdomyosarcoma a year.


What's the Outlook

Ross at his worst

The oncology team won’t give us statistics. While they are useful to them in an academic environment, the rarity of such cancers means that such stats have to be treated with care. Having so few cases of this exact type and circumstance do make it difficult to relate to Ross’s exact situation.

Having said that, figures would undoubtedly be more freely discussed if they were better! What is clear is that Ross needs more than just chemotherapy. Our Opthomologist and Oncologist gave us the options of surgery to remove the whole eye  and probably socket (even though the cancer was not in the actual eye) or radiotherapy in order to make sure any remaining cancer cells are killed.

Traditional radiotherapy however, has lots of side effects, including increasing the chance of developing a 2nd cancer throughout his life. As any radiation will be targeted to the muscle underneath and towards the inner eye, it is frighteningly close to the pituitary gland (responsible for his growth) and the front of his brain (where his learning and development could be affected). He’ll also need cranio-facial surgery, as his facial bones and their growth will be affected by it.

The younger he is at the time of treatment the more severe the side effects will be increasing the chance of major facial reconstructive surgery, even the chemotherapy can have lifelong effects on his heart, kidneys and liver.

So, you can probably see why neither of the above felt like great options. So after much time on the internet, the vague memory of a newspaper artical, and the help of Erin Spillar (whos son had Rhabdo)  we learned that Proton Therapy could offer the same treatment but with fewer side effects.


The NHS has granted us funding to have the treatment carried out in the USA.
This is great news as it means that we now only have to raise enough funds for travelling, accommodation and any long term aftercare.
We are still waiting for dates. Watch this space!


UPDATE! Ross's last scan in June was clear and he is now in remission. He is still being carefully monitored as this type of cancer has a high recurrence rate and his eye still has swelling round the lids and only a few small eyelashes to date.

Ross is full of life and loves to play outside with his big sister, this past year has been a nightmare for us all but he has come out the other end fighting and smiling.

Read this article from The Daily Record

 

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