First visit to the Proton Therapy Institute

Well, we've been here a week now and it's been quite a busy one. We arrived in the early hours of Monday, moved into our new home on the Tuesday and then on the Wednesday we had our first appoinment at the Proton Therapy Institute. As well as our consultation with Dr. Danny, Joel needed to have his mask made and a CT scan. It was quite an important scan as he needed to prove that he could lie still, otherwise they would decide to use general anaesthesia. This would mean a port or hickman line being put into his chest, and each day being nil by mouth for 6 hours.
I was not allowed to stay whilst the mask was made. Joel was very upset when I left him as he didn't know that he would have to clipped down in his mask for his scan. The play specialist asked me to leave and I stood outside the door listening. It wasn't long before i heard him chatting away happily.
He did well, and so far they are assuming that he will be able to manage it, although his first couple of sessions of treatment will be the deciding factor. Apparently they will give him Benadryl (an antihistamine) to make him a little drowsy.

During our appoinment, Dr. Danny talked about the prognosis and potential long term side effects of the treatment. He said that there is around a 70% chance of cure, where over a 5 year period the tumour may initially enlarge due to swelling, then it should stop growing and gradually reduce in size until it just leaves scar tissue. This was a better prognosis than we had been told in the UK. However, there is the potential for cell damage to his brain stem (this affects breathing, walking, swallowing and other major functions), his hearing and his vision, and a deteoriation in his IQ. We weren't aware until that point that he could potentially become deaf or not be able to walk properly due to the treatment. We were reassured though that the chance of this was small. We did already know about the risk of strokes and secondary brain tumours.
The consultants agreed that we had made the right choice of treatment. They told us that his December MRI was showing further signs of growth. They said that other children with these types of tumours who had been treated with chemotherapy, still ended up needing radiotherapy further down the line.

When there are so many potential side effects, it's good to know you've made the right decision.