Where do the days go?

So much has been happening we have barely had time to take a breath. I am going to have to go back and fill in the gaps! During all our fun filled days, Skye was on high dose steroids and life for him was pretty unbearable, so the activities served as an excellent distraction. He just wanted to eat all the time, and Sally and I weren't really able to satiate his constant need for food!

He was gradually weaned off the steroids and that was billed to us as the crunch point, as to how his body might respond as the steroids wore off. So far so good - we think! At the same time we have started Hyperbaric Oxygen Treatment (HBOT) in Swindon three times a week and that is becoming a little wearing on Sally with the long drive there and back. Going forward, we have a practice session in Abingdon on Wednesday 30th July, so hopefully we can move treatment closer to home. Abingdon is a much smaller centre and as such don't have as many resources at their disposal to treat children, initially we were told "too much paperwork involved" which is why we had no choice but to go to Swindon. However we have worked together with some lovely staff there to persuade the Abingdon centre to reconsider, so watch this space!

At the beginning of July there was a major International Neuro-Oncology Conference in Singapore and some of the consultants asked for Skye's imaging to be sent across for discussion. Bingo! We like that! So off they went and we had feedback via a conference call last week so that we could get a little more information about where to next. Probably the hardest thing is the not knowing, not being able to plan, and not being able to live a normal-ish life.

We have just received news that the application for a drug called Bevacizumab, which is used quite readily in the States, has just been approved by the Independent Funding Request Panel. So much red tape for the Consultants to deal with! Really hard to understand why Consultants can't be trusted to make these judgments of need. Yes the drugs are expensive but, there needs to be a degree of trust that the Consultants aren't going to prescribe drugs unnecessarily. The committee only meets once every two weeks so one just has to hope that the timing is right in the case of an emergency. Thank you once again to our Consultant who had to put together a monstrous amount of paperwork to get it approved! Well worth it when you get a positive result! Real team effort, with all of us, especially Uncle Simon and Sally, scrounging information from Consultants around the globe to provide the much needed 'evidence' for the panel to agree.

On the back of that, Skye had to have a raft of tests before we can start treatment. GFR, Urology, Audiology, BP, Weight, X-Ray, Ultrasounds, Bloods and Neurology. An exhausting 2 days of testing. We think we are on track for a Wednesday start. Treatment will take place every two weeks, for 8 cycles providing Skye shows no significant side-effects. The purpose of the treatment is possible reversal of the neurological decline he has experienced.

All sounding quite positive then! No! Skye has vomited 4 times in the past two weeks, so we have anxieties about what is going on inside. His appetite is zero and he is back to being fed through his PEG. And, he has been experiencing itchy head and ears for the past 3 days, which is how things kicked off 7 weeks ago. Sally and I are both very conscious that it was on the 27 July 2013, that Skye vomited for the first time. The start of what has become an enlightening journey for us all and indeed our family and friends.

On a brighter note, our gorgeous Skye, has been laughing and joking more than ever, a true stoic, despite all the challenges he faces on a daily basis. Yesterday he was trying out the new Rio version of Angry Birds - check out his moves when the music starts to play!

Jesse too, is bouncier than ever - too much so! He was so excited running into Skye's room, that he tripped over his own feet and went headfirst into Skye's bed. "Not the soft part", explains Skye. He has a great little shiner to show for it. Promise it won't be so long until the next post!