We're here to talk | 24-hours a day
08088 010 444FREE from landlines & most major mobile networks
Providing support to anyone affected by blood cancer
Our story began in January 2016, we had no idea that a routine trip to the doctors would result in such a devastating diagnosis and completely change our lives.
Our son Jenson is a lively five-year-old boy, he started school last September and had settled in brilliantly. Jenson hadn’t been ill, just the usual coughs and colds that the Autumn term always brings. One afternoon we were at home and Jenson slipped on the kitchen floor, I didn’t think much of it but when he was in the bath that evening, I noticed a bruise on his leg from the fall. It didn’t look like they normally do, it was bigger and almost star-like, I decided to keep an eye on it but I still wasn’t really worried.
A week later and the bruise had gone down but there was a tiny lump underneath so I took him to our GP to get checked out. He noticed that Jenson was a little pale, but I hadn’t noticed anything abnormal as Jenson is blonde and always looks more pale in the winter. The GP ordered some blood tests, we thought just to see if he was anaemic.
We went for the blood tests on a Friday afternoon, still not worried or expecting anything to come from them. We were called on Friday evening by the hospital telling us Jenson was anaemic and needed a blood transfusion and to take him in that evening.
When we arrived we were ushered into a room and Jenson was examined by the consultant. The consultant explained that due to the nature of Jenson’s blood counts he was pretty sure he had a form of leukaemia. At that point our whole world stopped, all we could think about was that our little boy, our much-loved and only child, was going to die.
The consultant explained that we would need to go to Bristol Children’s Hospital for further blood tests to find out what form of leukaemia he had and then work out a treatment plan.
We arrived at Bristol the next day and we were welcomed by an amazing team of consultants and nurses who looked after us so well. More tests were done and the diagnosis given. They told us Jenson had acute myeloid leukaemia (AML) and would need four intensive rounds of chemotherapy and would be in hospital for around six months.
My initial reaction was devastation. It’s hard to explain how it feels to receive two blows like that in two days, suffice to say, I felt like I’d been run over and really couldn’t think at all.
The day after, I went into organisation mode; how would we manage this? We were now in it and for Jenson’s sake had to get our act together. The first few weeks were hard, adapting to hospital life and establishing new routines but we got there. My partner and I did three- day shifts so that he could work and I got a break. It was imperative we stayed well otherwise we wouldn’t be allowed to be with Jenson.
Jenson was lucky as he coped well with chemo and had a period where he was really well. He was allowed home for a week three times during treatment which was amazing but heartbreaking when it was time to go back. Each time we told ourselves we were closer to the end of treatment.
It seemed so sudden that he was undergoing his last round of chemo, and we were transferred to our local hospital which made all the logistics more manageable. Jenson went from strength to strength.
While I was filled with relief, I was also starting to get niggling doubts about the leukaemia coming back. Within a couple of weeks Jenson came home for good and that’s where we are now. As I write this, we are waiting to go for his final bone marrow test and to have his Hickman line removed. What we hadn’t really prepared for is the huge adjustment coming home would bring. Suddenly bedtime is a thing of the past as in hospital you can’t have that routine. Jenson doesn’t like falling asleep on his own as he’s been so used to having one of us with him. He’s struggling with a mixture of emotions such as boredom, as he isn’t back at school yet but needs that stimulation and structure. He has a teacher who comes out three or four times a week which helps.
The one thing I would say to anyone going through this is, that the end of treatment is the beginning of another journey. It’s hard and sometimes painful, but when you see the colour coming back to your child’s face and they start to gain weight and their hair comes back, you realise there is hope. We want Jenson to live his life, not live in fear of this awful disease coming back. We know there are tough days ahead but we refuse to let this beat us. As far as we are concerned it won’t return and we are looking forward to Jenson returning to school sometime soon and for us all to return to a normal life.