Ross’s Story

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Early June 09 we noticed that Ross, our 18 month old son, had a puffy area on his lower right eye. We took him to our GP who said it was probably a blocked duct and would refer Ross to the eye pavilion for clarification.

5 weeks later Ross’s eye started to get bigger so I called our GP surgery to confirm that Ross had been referred to the eye pavilion, which they confirmed. I then called the eye pavillion to be told that the waiting list was 18 weeks. Feeling that this was unacceptable I returned to our GP surgery. The Dr said that there was not much more he could do so I decided to use my private medical insurance. The Dr referred us to the private hospital so I called to make an appointment. When I phoned I was told that there was only 1 eye specialist that would see children and he was on holiday and the first available appointment would be the 12 Aug! I took it as it was still quicker than the 18 week wait offered by the NHS.

The following week Ross’s eye grew rapidly so I took him back to the same GP I’d seen the week before and managed to persuade him to refer Ross as an emergency to the eye pavilion (had to cry -  he wouldn’t have if I hadn’t made such a fuss). We got an appointment for that afternoon.

RossOnce the eye specialist looked at Ross I started to feel really worried. He consulted with the senior Dr who sent us straight away for an ultrasound and booked us in for a biopsy on the Monday (this was a Friday). Once the biopsy was performed we were told that Ross had cancer – that is one of the worst moments of our life – Orbital RHABDOMYOSARCOMA. We had no idea what this was or what we were going to have to deal with.

Ward 2 staff (the oncology ward) were fantastic in taking the time to explain and help us understand everything.  Ross started the European Rhabdo protocol.

After the first cycle of chemo when Ross was neutropenic he contracted Staph aureus septicemia, a nasty blood infection. This was the big low point for us as we did not know if he was going to pull through this. Thankfully, with the help of specialists and the right combination of meds he started to respond.

The cancer did not respond as well as expected after the 3 cycles of chemotherapy so a course of radiotherapy was on the cards. This didn’t sound too bad to us and the ward staff did not make a big deal out of it.
Next, we met with the radiotherapy oncologist and learned of the side effects that traditional radiotherapy has, including increasing the chance of developing a secondary cancer throughout his life. As any radiation would be targeted under Ross’s eye, it would be close to the pituitary gland (responsible for his growth) and the front of his brain (where his learning and development could be affected), and there was a likelihood of cranio-facial surgery as his facial bones and their growth would be affected by radiation. As Ross was only 1 year old the more severe side effects would likely be for him.

We went home and I researched and hunted the internet and came across Proton Beam therapy which disappointingly no one from the hospital had told us about. Unfortunately this was not available in the UK. I then started to contact the leading NHS specialists and approached our radiation doc. She was happy to submit Ross for approval. After 4 weeks of fighting and stress, Ross had NHS funding and approval. He was the first patient in Scotland to travel to Jacksonville USA for 5 weeks of proton treatment.

We left the UK on 18th Dec 09. We had to organise everything ourselves so as well as looking after a very sick child we had travel arrangements, insurance etc to sort out. The first thing to be done when we arrived in the US was for Ross to get titanium screws fitted into his skull. This was to ensure the utmost accuracy during the treatment as proton therapy is accurate to 2 mm as opposed to over 1cm with traditional radiation – a huge difference in a 1 year old child. It also does not have an exit point which meant no radiation to his brain. Our time in the US was long but it was enlightening and interesting and of course, offered plenty of great shopping!! The positive outcome of our journey is that other families have been able to follow us over to US for treatment.

RossWe had a scan in Mar 09 that was inconclusive but after a further scan in Jun 09 we heard the fantastic word ‘REMISSION!!!!!!’

Ross will have lifelong eye issues and will probably have some growth issues but hopefully nothing requiring surgery! And of course, he’ll experience the usual chemo issues of reduced kidney function and him being unlikely to father kids – but he’s still here, he survived and every day I am so, so thankful for that and also every day I pray that it doesn’t come back!

Ross Anderton has a big sister Katie Anderton who is 4, Dad – Andy Anderton, Mum (me) Lesley. He also has a web page that was created by a neighbour – that also has more pictures and information on Proton.

There are still families in this country who are not getting the choice between traditional radiation and Proton beam. People need to be aware of this option as it has so many less side effects and even today I read a very interesting article on late effects and secondary cancers caused by radiation ( urging patients to seek the most advanced treatments – but these are not being offered!

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