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My name is Tracey, I’m 48 and I’m married to a wonderful man called Ian. We have eight children, five girls and three boys and our nightmare began on 3rd March 2014.
Our son Jack was 7 1/2 years old at the time and he had been feeling unwell for a week or two, upset tummy, cold, cough, just generally under the weather, but nothing that he hadn’t had before. It seemed like the usual childhood illnesses, only this time it was getting worse. He began to lose weight and his chest was quite tight, (he along with his siblings are all asthmatic)
We took Jack to our GP, who wasn’t happy with his chest, or how much weight he’d lost. She also showed me he had tiny red pin prick marks on the back of his neck and on top of his shoulders which I hadn’t noticed. The GP prescribed some steroids to give him for a week and said she would make an appointment for him at our local hospital about his chest. A week later we were at the hospital for Jack’s appointment.
Jack was weighed, had blood test after blood test which was absolutely horrendous. He had needles in his arms, wrists, hands and feet and it was extremely traumatic for him and for us to watch. He was also put straight on a nebuliser as he had very little oxygen in his system, it was a very scary time.
We were told he would stay in overnight for the results and to make sure his oxygen levels were up. Several hours later (Ian had gone home), I was told Jack had leukaemia but they weren’t sure what type – I didn’t know that there were different “types” of leukaemia.
I was in total shock, I almost fainted when I heard the news, so the hospital contacted my husband as he was at home looking after our other children. They didn’t tell him what the problem was; we waited until he came to the hospital. I couldn’t stop crying, he couldn’t stop
crying; it was so difficult to take in that our son had cancer. What were we supposed to do now?
The hospital prepared Jack for transfer to Leicester Royal Infirmary, over an hour away. We couldn’t go in the ambulance with him, as he was so poorly, he had to have a platelet transfusion on the way.
At Leicester Royal Infirmary they did more tests to confirm it was t-cell acute lymphoblastic leukaemia.
Jack had to have chest x-rays, blood transfusions, a lumbar puncture and bone marrow aspirate and more platelets. Unfortunately, they found a tumour between his lungs which was full of fluid so they couldn’t do anything treatment wise until they put a chest drain into Jack. They drained off a litre and a half of fluid.
Jack had a Hickman line inserted, and he was randomised and put on the 2011 German protocol. Jack had a few issues with the chemotherapy. He was quite sick and had terrible tummy, bone, muscle and joint problems and also hair loss because of the treatment.
He did cope extremely well with everything that was thrown at him and went into remission straight away, which was fantastic. He went through each stage of treatment quite well, didn’t suffer too much apart from hair loss, the occasional blood and platelet transfusions, and of course, sickness. He went back to school and entered maintenance treatment after 13 months.
Sadly, 13 months into treatment, Jack relapsed. The leukaemia was back in his spinal fluid this time and not in his bone marrow like it was at diagnosis. Devastated wasn’t the word. Jack looked so well, all his bloods were good, his platelet count was great. It was a total shock. Jack was admitted the day after his lumbar puncture, the day we got the phone call – 8th April 2015.
We arrived back at the hospital and Jack was randomised for more intensive treatment to get him back into remission. We were then told once in remission he would need a bone marrow transplant, that it was the only way to beat the leukaemia now. Jack managed to go into remission again straight away.
We had Jack’s seven siblings tested to see if they were a match and fortunately two were, which was incredible as it’s quite rare apparently.
It was decided that Jack’s oldest brother Lewis would be the donor with Charlotte on standby if there was a problem with Lewis’ donation. Jack had to stay in Sheffield Children’s Hospital for the transplant. He was prepared for the transplant with more intensive chemotherapy and radiotherapy and TBI, (Total Body Irradiation) to totally wipe out Jack’s own bone marrow.
4th June 2015 was the day of Jack’s transplant. Jack’s brother Lewis was taken to theatre in the morning and the bone marrow was removed and transplanted into Jack. Jack and I were in isolation for two weeks following the transplant; Jack was very poorly after as his skin reacted badly with GVHD (Graft versus host disease) which often happens.
Jack is now 15 months post- transplant and leukaemia free; NED (no evidence of disease). He is now 10 years old and back in full-time school, which is great! Jack still has issues with mobility and joint pain and uses a pushchair to help him get about if distance is an issue.
I started running six months after Jack was diagnosed in 2014. I joined a local running group as I found it really helped me think about the things that happened to our family.
I decided to apply for the London Marathon and support Leukaemia Care because I feel really passionate about raising money and awareness and it’s something I can do.
Life completely changed for our family, I had to stop work – I was only in my new job for six weeks!
Jack is doing well at the moment, he loves school and is really looking forward to spending time with his school friends.