Jack’s long overdue update Feb 2011.
I’ve tried to sit down and type this about 20 times over the last year, but have always been distracted normally by Jack wanting attention, hospital stop over’s or just everyday hurdles.
The end of the last update Jack had started his Chemotherapy which was scheduled for 8 courses over a period of 48 weeks depending on how he coped with it and whether it caused any long term damages. Each course consisted of driving to the JR in Oxford which took an hour, and staying in for a minimum of 33 hours to have 3 types of Chemo put into him along with anti sickness and hydration fluids. After a slight hic up with the first course as explained in the previous update, the next few courses went without much fuss. Jack had to have blood tests every week whilst he was on this treatment to monitor how low or high his blood counts were, and to determine what risk category he was in at certain times of the 6 week period, and whether to keep other people away from him and us in fear of catching swine flu, chicken pox and other infections that could potentially kill him whilst his body’s immune system was killed off by this Chemo. Jack recovered from his courses very well with only having to have one blood transfusion where as many children have to have transfusions all the way through along with other types of transfusions too.
Jack was booked in for 8 courses, and each one he had seemed to take longer each time for him to recover. Courses 5 and 6 really took their toll on him and dragged him to rock bottom, and whilst he was still not eating or taking his protein shakes, we managed to maintain his frail body weight by giving him chocolate, cakes and drinks with lots of sugar, double cream, whipped cream and the odd protein powder mix thrown in. Every time we had to go to hospital Jack had his weight taken and each time was a massive issue for him as he lost weight every time and the doctors were talking about putting a tube down through his nose and into his stomach to feed him with the nutrients he needed to gain weight . Each time we went he would beg us not to let them do it and he promised to eat more in the future. The fear of having this tube used to keep him awake for a couple of nights before going and we had many a sobbing session. Because he promised to make a bigger effort in his eating, I was a naughty daddy and slipped a couple of fishing lead weights into his pocket on weighing day which helped him overcome his fear and Jack did try his hardest to force more food down only to feel really sick and sometimes bring it all up again.
Jack was booked in for his 7th course of chemo on the 27th of July 2010
which was a Tuesday. He went to bed at 7pm on the Sunday and after about an hour of him being in bed and Helen being up there with him talking to him, jack came back downstairs breaking his heart crying and sobbing, I cuddled up with him on the sofa and asked him what the matter was and he said, I know you’re going to say I have to have it, but I really don’t want any more Chemo as it makes me feel very ill and sick! Jack said I’ve been very brave and I know I have to have 2 more courses but dad I can’t handle any more. I promised him that I would do everything I could to get it stopped as long as it didn’t mean he was in any danger of it coming back due to it getting stopped. We spent the whole of the next day talking to doctors, nurses and consultants about what the risks were by stopping it. Everyone we spoke to was so proud of us for listening to Jack and understanding his needs. It was agreed that the chemo was to be cancelled and that there wouldn’t be any danger to jack having a relapse due to this decision. The consultant said that if the 6 courses that he has had doesn’t do the job, another 2 courses would not do much more, and they were going to stop the vincristine Chemo over the next 2 courses anyhow as it was affecting his balance and walking. Jack went into Reading hospital 3 weeks later to have his Hickman line taken out, and 10 days after that I took him swimming. Jack has now had 2 MRI scans since finishing his treatment and both have come back all clear. This is not a guarantee that he is now cured and will never get it back. It will be at least 10 years before we can let our defences down a bit. Jack now under a lot of surveillance and booked in for various tests to monitor his learning abilities, spinal growth and hormone responses. These are just a few of the damaging effects of the radiotherapy. Although Jack can be very emotional at times and still finds
it difficult to control the left hand side of his body when walking and using his left arm and hand, he is very happy in life most of the time. We were relieved when Jack gave up his obsession with Abba and other pop groups that wore out our ears 18 hours a day, but now for the last year his obsession has been Dr Who and our house has been turned into shrine for his hero Matt Smith.
It’s been nearly 2 years now since Jack got diagnosed and we as a family have been to emotional places that we wouldn’t wish upon our worst enemies. Our families and friends have been an outstanding support to us and we could never find the words express our gratitude and gratefulness, but the generosity of strangers has overwhelmed us. People like Luke Tillen of the THHN, Bearwood School (where Jack goes), Janet of the NC TLC Trust and Starlight Children’s Foundation to name but a few. These people have given us faith in charities and breaks away to focus on and have help in building positivity in our minds to cope with the next stage of our journey. Thank you.
Please keep visiting Jack’s site and share it with whoever you can, especially with parents with young children to educate them of the symptoms. GP’s are not qualified in our opinion enough to diagnose real illnesses like brain tumours and childhood cancer.
Allan & Helen