London - Radiotherapy

Anything which I attempt to write, will seem wholly inadequate in comparison to what Skye has undergone during the past few days. On Friday 29th Nov Sally and Skye travelled to London for a practice run under treatment conditions. It is fair to say that things did not go well, and it took some 3 and a half hours to get him onto the table and locked in position. Often masks become cold and can shrink slightly, when not worn regularly and this made things very uncomfortable for him and he just blankly refused, with hysterical screaming and lots of tears. He felt as though he couldn't breath and was a little bit panicked. As a result treatment was postponed on Monday to go through another practice run. His ability to stay still during the delivery of the radiation is imperative, and they cannot afford to spend 3 hours each day cajoling him into it. Twice daily general anaesthetic is the very unattractive alternative. Monday morning's practice run was touch and go, but eventually Sally and the Radio team managed to cajole, bribe, bargain him onto the table and complete the practice run. While the team were going through the motions of rotating the Linac (Linear Accelerator) around him as per treatment, phone calls were made to line up the anaesthetists for twice dailies because of how things had gone. Something clicked, and Skye became unbelievably brave. He lay rigid on the table with his thumb up to indicate to us that he was fine. For someone so little to be alone in an enormous room, lying on a cold hard carbon board, not being able to move or speak, with the Linac twisting around you has to be more than anyone his age should have to go through. It was enough to reduce us to tears, standing watching him on the cctv screens, dwarfed by the Linac in the cavernous room. We took a break from the hospital at lunch time and headed for Winter Wonderland in Hyde Park. He chose to go into the Toy Factory house of fun and again it reduced us to tears watching him determinedly making his way around. This was followed up by strawberries in melted chocolate, which he proceeded to drip all over his coat and Daddy's head. Probably unwise to have let him eat these while sitting on my shoulders. It was lovely to spend time with him, watching him take in all the different activities and for him to be chatting to us about what he wants to do do after each RT session. This had to be followed up by the 2nd practice run on Monday afternoon to do final checks and ensure that he was compliant. He was absolutely brilliant. Got onto the table, lay absolutely still (like the guards outside Buckingham Palace - aka the Queen's House, our Sunday outing, along with bowling), and behaved impeccably. The team were delighted and on the back of it, agreed for treatment to start yesterday morning without GA's. After a restless night for mom and dad, and Skye awake until 10pm because he was so excited about his new surroundings, he was on the table for the start of treatment at 9am. He requested Grease Lightning on looped play during his session, and he was the perfect patient. Lying still on the table while they positioned him, and delivered the treatment. Although you are only next door watching on the monitors, his little emaciated frame seems so far away and so vulnerable, next to the equipment. I can't begin to describe the pride which we feel, his bravery, fortitude and understanding of the whole experience. It is like watching a movie where they are about to initiate the launch of missiles as they double check co-ordinates and doses verbally before activating the beams by turning the key. We again headed off to Winter Wonderland for Skye's next treat on the bumper cars. We had the whole rink to ourselves, and Skye and I had great fun chasing mummy around and giving her a good nudge. After a stroll down Oxford Street and taking in the Selfridges Christmas window displays, it was back to hospital for round 2. Again, Skye settled into his mask and delivery of the radiation went smoothly. 2 down - 4 to go! The vomiting has unfortunately started and dealing with that is his next challenge. The exit rays from the spinal radiation are directly through the neck, lungs, heart, stomach and gut, and dealing with that is the next challenge. There will also be swelling of the brain, which will need to be controlled. How long he will feel up to doing activities each day remains to be seen, but he is being so strong and so brave. As is Sally, she has been remarkable through the whole process. Under the intense prolonged pressure she has engaged Skye, coaxed him, and succeeded in getting him onto the treatment table. Her strength throughout has been extraordinary to witness. We move forward one step at a time, in awe of Skye and what he is having to endure. He has endeared himself to the Radio team, giving them all nicknames, which he whispers in their ears. He is amongst 'friends' in the unit, who are taking very good care of him. We are so incredibly proud of him. He is very much treated as an individual and is not just another case. We are full of praise for their patience in allowing Sally to work with Skye and not rush to a GA decision. We hope and pray for a successful outcome.