Radiotherapy - decision to be made!

Skye is being incredibly brave at a very difficult time. He was due to be at home for almost 2 and a half weeks from the 30th September, ahead of his next course of chemo starting on the 17th October, but in reality that was a pipe dream. After 3 days at home he had to go back in for 48 hours with a raised temperature, and after being at home for another two days, had to go back in for a platelet transfusion, and last night, his temperature spiked again and he has again been admitted for further treatment. His neutrophils, which are essential for fighting infection, are indistinguishable in the blood tests, but as a result of his daily GCSF injections his white blood cell count is on the way back up, and this is positive in that his neutrophils should follow suit. It is a constant struggle to get sufficient nutrition into him to maintain his weight and strength. The end result may well be a naso-gastric tube to assist with the feeding process. As a result he is pretty flat at the moment. On Monday, Sally and I had our introductory meeting with the Radiotherapy Department, which was a real reality check. Skye is scheduled to have twice daily treatments, 6 hours apart, Monday to Friday, for 5 weeks, starting at the end of November. He needs to have a mask fitted that will hold him the exact same position for each treatment. Hopefully we can do this with him being conscious. If not, we will have to relocate to Birmingham or London, where they are able to perform two GA's per day, if we are going to follow the set protocol. The hospital's here are only able to administer one per day. This brings the added complication of the length of time that Skye has to be nil by mouth. We are therefore hoping that Skye is able to handle the process while conscious. Yesterday's induction for him, while feeling pretty rubbish went as well as we could hope. Our other major dilemma, is the major long term effects of radiotherapy on the developing brain and spine, and the possibility that proton therapy, only available in the U.S., may have fewer side effects, BUT this is mostly theoretical and not well documented over longer periods of time. The advantage of conventional radiotherapy is that it is thought that the 'glow' or 'spill' around the radiation sites is beneficial in mopping up malignant cells, but the major down side is both the exit rays, through the thyroid, heart, stomach and gut. The impact on neurological functioning and growth is the same for both treatments, ie bad, but proton therapy has a perceived lower incidence of secondary tumours. Apologies if this comes across as a negative email - but just the way it is!