Family Blog
Over the past two weeks there has been a great deal in the local press, and a very balanced article in the Daily Mail online about Skye's current situation and of course his latest initiative Loom to the Moon. As with any press release, there is going to be an element of sensationalism and the need for a 'story'.
Our story is one of an inspirational young man, who has stood tall against everything that has been thrown at him over the past year. Although this is devastating to us as a family, and the cause of great heartache, there is nothing sensational about this. It is purely and simply a story of inspiration. Yes we have been fighting for our son's survival, and yes we have hit frustrations with bureaucracy along the way, but we are fundraising for Blue Skye Thinking so that all children have a better chance of survival and a better quality of life post treatment.
Currently less than 1% of cancer funding goes towards this number one cancer killer in children. We have never 'slammed', or 'hit out' in any shape or form. Ours is a campaign of awareness and raising as much money as we can whilst supporting our son Skye to live each day in a fulfilled and enjoyable manner.
Last Tuesday we headed for the Hospital again for a check up to see how Skye was getting on with his plethora of medication. Our days are filled with alarms sounding so that we get the right drugs in at the right time. It is pretty much non-stop!
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As we had been warned, Skye began to display signs that his swallow reflex, which includes the closure of the trachea to prevent fluids going into the lungs, was starting to deteriorate. When he drinks less dense fluids like water, it causes him to cough, so we now have to add a thickening agent to his drinks. We have also had to increase his analgesics to keep on top of his pain. Apart from that, and of course being unable to move from the neck down, he continues to be the most remarkable young man with a great deal of charisma.
Having an itch which you can't scratch must be the most frustrating thing. Unfortunately he experiences this often due to the tingling sensation brought on by the neural damage, which causes the itching. He has absolutely no movement left in his hands and legs, and apart from calling for assistance, he has no alternative to deal with it.
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The cousins with the day's delivery of loom before connecting and storing for the 'roll out' on Friday!
We were back at the hospital for the next round of Avastin on Thursday, which went smoothly and then home to spend time with the cousins from Devon. They all had great fun learning magic tricks and demonstrating them under the ever critical eye of Skye! Daddy scored a massive 0 out of 10 - because he was rubbish! Dylan however was pretty impressive with a score of 1000 out of 10 - serious praise!
Friday was an exciting day! With the Ice Cream machine in place, courtesy of Jamie and Tasha Waldman and the artistic talents of Gabriel Drewett, we set off to Millets Farm Centre for Skye's ice-cream prank and the laying out of the looms. Skye had a huge amount of fun, and when we finally told him at 5.15pm that it was time to go home, he burst into tears. So many people worked together to make sure everything came together and we are truly grateful to all involved. Making the box, painting the box, transporting the box, getting all the required gadgets, and co-ordinating the day was a real team effort. A huge thank you to David and his crew from London for coming along to do the filming.
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Getting our tongues ready so that we can tuck into the ice cream!
Saturday was a much quieter affair, just spending time at home, opening the mail, and connecting loom bands with the help of some friends. On Sunday, it was time to tick another box as we travelled to Bibury to the Trout Farm to catch some fish. Skye loved the experience we had in NZ last year and he was keen to do it again. Not confident enough in my own skills to guarantee a catch at any old location, going to a fish farm is ideal!
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"Five daddy, I want five, because I am 5 years old!"
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And so it was!
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It was lovely to be able to share the day with Uncle Simon, Tess and Cordy, before they winged their way home.
Behind all the excitement is of course the concern surrounding Skye's condition. When he announced at breakfast that he could see two tv's instead of one and last night, that Daddy had two heads, we record yet another sign of the deterioration that is slowly robbing him of his existence, and therein lies the stark reality which we have to face every minute of every day.
Today, I married the girl of my dreams. We fell in love at Pre-school and apart from one little hiccup when I was travelling the world and she thought of marrying Sam, we have been committed to each other ever since. I love you Ellie!
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Here is the exclusive wedding video. Ellie Cash (now Mrs Hall) looks every bit the beautiful bride in her stylish shower cap and paper veil. In true Royal style, her ever doting sister Amelie was present at the ceremony and hand made heart shaped confetti to adorn the happy couple.
Also present was Skye's brother Jesse, who opted to be the flower girl and ring bearer as it allowed him to model a stunning pink designer dress, almost matching the charm and beauty of the bride herself.
For the wedding breakfast they all enjoyed a McDonald's and ice cream. The plan is to go to Milletts Farm Maize for their honeymoon tomorrow for a little private time out of the spotlight.
Congratulations to you both.
Skye's Dad, Andrew, and #loomtothemoon team member Hannah talk on BBC Radio Oxford about how you can help us to raise money for research into treatment for childhood brain tumours and, of course, to reach the moon! Listen below…
Thursday proved to be a busy day. A final meeting with the medical staff before discharge was a sobering one. We went through the full list of medication, followed by a step by step process of possible / probable events in the coming weeks. Everything typed out and documented so that we are prepared, as best as one can be, for whatever might transpire in the coming days. Sally continues to be as strong as ever, looking after Skye's every need and more.
It was important that we had distractions on Thursday afternoon, so from hospital we went straight on to Special Effect in Charlbury. Having lost all movement in his arms and hands, Skye was able to play games again using computerised eye gaze technology and a click button which he uses by moving his head. To top it all off, Dr Mick Donegan, the Founder and Director of Special Effect, arrived at the house on Friday afternoon to set up a unit for Skye to use here at home. Skye has benefitted enormously from it, even playing ten pin bowling against Uncle Simon via Skype in Kenya!
Straight from Special Effect we went to visit Halcyon Honey Farm, where we were hosted royally by Geoffrey and Janet Burroughs. Skye got to see the bees being smoked out of the hive by burning an old pair of Geoffs smelly socks, so he says, followed by having the opportunity of digging his fingers into the comb and sucking on them. We then went through to the potting shed where Skye was shown the process from comb to bottling. He was absolutely riveted and we are sincerely grateful to Geoffrey and Janet for their wonderful hospitality and generosity.
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It was a lovely afternoon which proved to be a great distraction for us all from the stark reality of our morning conversations.
Yesterday proved to be another busy day. Skye is wanting continuous activities and Sally as per usual is coming up with the goods. Me, not so inventive, I wish I had the resourcefulness of Sally and Mister Maker. Sally and Skye were making a bird house at 4am this morning! We were called into a meeting yesterday to have discussions about terminal care. Hospital, Home or Helen & Douglas House are the 3 options. We naturally opted for home, so the medical staff in conjunction with the staff from Helen & Douglas House will make arrangements for that to happen, so that we have everything we need when he comes home tomorrow - hopefully!
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Skye now struggles to hold his head in an upright position. When he his lying down he can move it from side to side but once it has flopped forward he needs assistance getting it back up again. What is all the more hard to take, is that he is so bright and alert in terms of his memory, his speech (slightly altered), and his sense of humour.
Once again, we have no time scales, but he could plateau and stabilise over a period of weeks followed by another dip, and so on, or he could simply stop breathing after further deterioration.
Ironic that he chose the Indian Brave for face painting. If only he knew how brave he has been throughout his ordeal.
"Mummy, today is not what I imagined it would be like. "
"Can we please do an activity in hospital today - something we have not done before?"
"I think Jesse needs a pink trampoline so he does not jump so close to me on the setee when we get home. If it is pink, he will love it."
Skye was admitted to hospital on Saturday and has been receiving high dose steroids, Gabapentin, an anti-seizure drug, and morphine to control his pain. He continues to inspire us as a family and indeed all those he comes into contact with.
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Finally got his BP down and he had his Avastin infusion on Friday, 48 hours later than planned, which meant 48 more hours of deterioration in his physical capacity. His hands are now completely clenched and by lunchtime today, could not hold himself in an upright sitting position, and could not raise his hand to his mouth to feed himself his favourite snack! Letting gravity take his head and chest towards his hand was his only option, but then needed assistance sitting up again.
This is devastating progression in such a short space of time. Yesterday, his elbows became locked for periods of time, his musculature clearly being distressed by whatever is happening to his white matter internally. Skye was admitted to hospital last night and will be there for the next few days, while they restart the high dose steroids. We are hoping that this will halt the progression of his decline. Where we go from here - no idea! Still hoping for some sort of revelation or miracle!
It is a consolation that his higher level functioning is still pretty good, and he can talk to us, and even crack jokes but if the current decline continues, we are only too aware of where it will end.
Today was crazy busy trying to squeeze everything in. Sally and Jesse went up to the hospital for ultrasound of 'crooked thumbs up'. Standing joke, must have dislocated his thumb at some stage and parents have not got round to doing anything about it. Yes, we feel guilty! Should be fine. Back to Abingdon for HBOT trial at 10am - Skye a superstar and convinced them that it was really quite simple. Skye arrived back and said "Best one yet!" Nice - just need to get all the paperwork in place and a hood to fit! Lovely of the Swindon MS team to drive all the way across to assist in the trial run. Back home just before one, load Jesse into the car and off to Granny's and 'Carol Clock' for the afternoon, while Sally and Skye went to hospital for a blood re-test before starting Bevacizumab infusion. Daddy went off to say farewell to a friend and colleague who has just succumbed to Cancer.
Sitting typing at 23.37 listening to Skye moaning on the monitor. Sally is with him but he is very uncomfortable. He awoke with headache this morning and complained of a stiff and sore neck, as well as nausea. Real concerns that he has dipped again. They won't start the Bavacizumab (Avastin) due to high BP, but no other form of treatment. So we sit and wait very anxiously to get cracking. Won't put him back on steroids! Too soon after the last high doses.