“I was diagnosed with Leukaemia on Mothers Day 2008, so that certainly wasn’t a happy one!’ explains Jake, now 14 from Essex. Jake was just 11 at the time and Mum Karen recalls, “Cancer was the last word on earth I expected to hear, as Jake didn’t look or seem ill at all. He had Acute Myeloid Leukaemia, more common in adults and very aggressive. He had to stay in hospital at Great Ormond Street for five months.”
Jake recalls, “At first I was angry that I had cancer, it was pretty traumatizing, but then I realised I had to accept what was going on. I was nervous but knew I had to get on with it to get through it.”
Karen continues, “Jakes treatment was pretty toxic but unexpectedly, after his first dose of chemo, he couldn’t breathe properly, was coughing up blood, and was very tired and weak. The hospital decided to put him into an induced coma in intensive care, to give him a rest. We had expected him to come out of the coma after a few days, but he got worse. His lungs began bleeding so they had to try and stop that first. He was on a ventilator with tubes coming out of everywhere, ankles, elbows, groin, You don’t realize the gravity of the situation until you hear the words’ your son is critically ill’. A couple of times we had the chat ‘he needs to turn a corner in the next 24 hours or else…,’ with the medical staff, it was terrifying….Then he started to turn around. He was slowly weaned off of everything but wasn’t responding as they expected, and they found some lumps in his brain, which were either a treatable infection, or leukaemic deposits, in which case there would be nothing they could do. They treated for infection and thankfully he woke from his coma, but that still wasn’t the end of it. “
Jake remembers, “The last thing I remember was sipping water and putting the mask on before sleeping. When I woke up I had no idea it was a month later, and I couldn’t move! That was something I’d always taken for granted and so it felt very weird. The only way anyone could tell I was frustrated or wanted to talk was that they could see my blood pressure going up. I was given drink with a sponge; it was like being a baby again.
“Before Jake’s coma he had just been tired, but since then so much had happened that he wasn’t aware of, so when he came round he just didn’t know what was what. He couldn’t talk, only blink. When he did start talking he’d just shout out random things, we were scared that he might be like that forever, and he still had several courses of chemo to go.
He had lost half his body weight and couldn’t walk so had to have loads of physio to even begin to move his head, to swallow and to walk again. He literally had to relearn how to do everything,”
Jake said “There were stitches in my head I never even knew about until I saw them in the mirror at physio! My first sessions were torture, I could fly around in my wheelchair but had to start using my feet, so when I eventually did start moving I walked like a penguin. Every week at physio they said I was doing better, looking brighter. I was so relieved when they let me go home for a week, it didn’t change anything but it was lovely to see my friends in my own home for a change.
Karen remembers, “Jake was brilliant throughout his treatment and physio, and never once moaned or complained about any of it. I told him he’d been given a second chance and it was up to him to work at it to get better, and he really did. In time he returned to school, catching up quickly with everything he’d missed. When the chance to sail with the Trust came up we told him to seize the day, and he loved it.”
Jake continues, “I didn’t know what to expect but it was brilliant, I didn’t really think about having cancer. Once we all knew what we’d had there was no need to dwell on it. I just had fun and it helped to put everything behind me. When I returned the next year to Bradwell I didn’t think it could be as good, but I really enjoyed it, it was like good old fashioned fun, something different without computer games, instead we were making fancy dress out of bin bags! I didn’t think id get far up the high ropes but I went up all the way, and loved sailing to Brightlingsea. I’m really looking forward to my next trip this summer!”
Jake’s done lots of things since treatment, made a video to help others going through treatment, fundraising for Great Ormond Street and involved in the pitch to get the hospital nominated as his favourite football club Arsenals Charity of the Year. He also won a Pride of Britain Children of Courage Award, a really proud moment for Jake and his family. We can’t wait to see him return to sail at the Trusts longer cruising week in August.
“We have done so much this week, barbeques, water fights, football, and sailing! We’ve had loads of fun. I love boats, and it has been exciting to learn from such a great crew. I couldn’t pick the best thing about this week, although meeting Ellen was awesome! I would come back any day!”
- Cameron, 16
“It is great to see the smiles on peoples faces and give something back to The Trust. I hope that sharing my experiences can help them. This week has been great; it has been mainly water fights with a bit of sailing!!”
- Chris, Trust Graduate Volunteer