RT - Decision Made

It has been a busy couple of weeks, in many ways due to the fact that since finishing his most recent round of chemo on the 21st of October, Skye has been on pretty good form. He has been nowhere near as sick, literally, as he has been after previous infusions and we have had the pleasure of his company at home, apart from a platelet infusion on Tuesday and a blood infusion today. It has really good to see him in such good spirits, apart from the regular bouts of frustration, which can be very tricky to manage. Sally and I have had some big decisions to make regarding Skye's treatment, and these have been particularly draining. Without boring everyone with the details; radiotherapy is the treatment that fills us with dread due to the long term side effects. This is scheduled to start on the 25th November, dependent on recovery after his next chemo. We had a very constructive meeting with a Consultant in London, who confirmed what we were leaning towards, which was opting for conventional radiotherapy rather than decamping to the States and receiving Proton Beam Therapy. This is a huge weight off our shoulders with the associated logistics and costs. Bottom Line: conventional radiotherapy is seen to be a slightly more effective therapy when dealing with high risk metastatic medulloblastoma. We have to bear in mind that we are fighting for Skye's survival, but at the same time being able to justify our treatment decisions to him years down the line. We believe that we have made the right decision. Skye performed admirably for the fitting of his radiotherapy mask, which gives us a great deal of confidence going forward, but a few uncertainties remained which we needed to get our heads around. Firstly, because of the nature of the treatment protocol (twice daily, 5 days a week for 5 weeks), this is an awfully long time for Skye to be lying absolutely still. If he starts treatment in Oxford and they have to resort to General Anaesthetic, this would mean a change of protocol to once daily treatments, which is not optimal. In London we could make a transition to twice daily GA's. Secondly, parents are not able to be in contact via speaker phone with the patient whilst undergoing therapy in Oxford but this is possible in London. We feel that for Skye, to optimise treatment in terms of the protocol and for his comfort if he suddenly needs vocal contact/support from either of us, that the only option for us is to undergo radiotherapy under the guidance of the team at UCLH. This has been a very hard decision for us to make because clearly there are logistical implications, but feel it is in Skye's best interests. Our Consultant Oncologist has referred us successfully (more complicated than it appears in black and white) to UCLH for Skye's radiotherapy treatment. After which we will return to Oxford to continue with chemotherapy. This will require a couple of trips to London in the coming week to set up new masks and have preparatory CT scans, followed by Skye's next course of chemo on the 7th. Our initial thoughts are that Sally and Skye will move to London for the treatment and hopefully be well enough to come home for weekends. I will remain at home with Jesse until term ends on the 13th of December and then join them in London. We are delighted to have Sally's brother Simon, together with Tess and baby Cordelia (aka Cordydelala by Jesse) with us for the weekend, 'all the way from Africa'! All the kindness we have been shown is truly humbling, and only wish we had the time and opportunity to say thank you to everyone individually. Please take this as a sincere thank you for every message, card, thought and prayer that reaches us from around the world.