I always thought we were the lucky ones, we had two happy healthy boys. That all changed in November 2013 when Jenson was diagnosed with leukaemia, a type of blood cancer. He was only four. Now that we have spent two Christmases with our child fighting for his life, and one spent on the hospital ward itself, the festive season means so much more to us as a family.
The first time round, I was driving Jenson home and I noticed a swelling on the side of his face under his chin when I looked back at him in the rear-view mirror. On a closer look, I realised there was a hard lump there. He rarely had anything wrong with him, so I didn’t take any chances.
I took him to A&E and was asked to return the following morning to see the consultant who then examined him and referred him to Alder Hey children’s hospital. After various tests and X-rays, we were told to bring Jenson back for an urgent biopsy. When the results came back he was diagnosed with acute lymphoblastic leukaemia – one minute he had started school, and we had been starting to think about Christmas and the next thing we knew everything changed.
I’d lost my sister to cancer a few years before, so I’d already had a feeling that it was something serious. I’d started to prepare myself for the worst, but it was still such a huge shock when we were told the news. I felt numbness, shock, fear – every bit of emotion you can imagine when it’s your child. Then the survival instinct kicked in and I just thought “we have to get through it”.
Christmas that year was very difficult. Jenson had started treatment straight away and had nine months of intensive chemotherapy, which involved lots of time in the hospital and had frequent lumbar punctures too, which he hated.
Over the festive season, he was on steroids to help him cope with the chemotherapy, but the side effects were horrible. He lost his hair, his face and body were swollen, he was constantly hungry and he had big mood swings which would make him really angry. He was only four and he was scared – he couldn’t understand what was happening to him. It was so hard to explain that he had to go through the process to get better.
The hardest part was watching him being so ill and feeling completely helpless – especially at a time when we’re all supposed to be celebrating with each other. Christmas is such a special family time, so it was heartbreaking to have to stand by and watch him go through such a horrible illness. There was nothing I could do to make him better. We had to put his life in someone else’s hands and just have faith that it’s going to work.
Thankfully, he responded well to the treatment. The tumour started to shrink and by the end of the nine months, tests showed that there were no cancer cells left. He then started the maintenance part of his treatment in 2014. The aim of this is to get rid of any leukaemia cells that might be still there, and to lower the risk of the cancer coming back. He finished all of his treatment in July 2016 - finally his life started to go back to normal.
However, at a routine check-up a few weeks later, the doctors spotted an anomaly in his blood test results. Devastatingly, the cancer had returned, and we were given the news in September 2016 that Jenson had acute myeloid leukaemia, which is a different form of blood cancer. He was incredible and took it all in his stride, but we just couldn’t believe we could be this unlucky.
He went back into hospital in October and had two rounds of chemotherapy but unfortunately, it didn’t work as hoped. For the second time, our family Christmas we had planned was ruined when we found out that Jenson had to have a stem cell transplant on 21 December. This meant he was going to be poorly over Christmas and would have to stay in hospital until the end of January.
Despite everything, we wanted to make sure that Jenson could still celebrate Christmas. Because we knew he needed to have a stem cell transplant just a few days before Christmas Day, we decided to celebrate early and had it in November instead. Jenson was in isolation in hospital, but he was allowed to come home for the weekend where we got all the family together and exchanged presents. I was so pleased we were able to make memories and give Jenson a happy, carefree time surrounded by all his family.
When it came to Christmas itself, the only people he could see on Christmas Day and Boxing Day were me and his dad. He wasn’t allowed see anyone else so that was really tough. He had no immunity and we needed to protect him. Thankfully, that was the last Christmas we would have to spend on a hospital ward.
The stem cell transplant worked and saved his life. Since then, Jenson has been going from strength to strength – we’ve been told he’s in remission. He is such an incredible and brave boy. He has been through so much at such a young age, but he doesn’t let it faze him. Jenson’s illness has made us value the time we have together more and appreciate what we have as a family. Life’s so short and it can be taken away from you in the blink of an eye – we realise this even more at this time of year.
Spending time together as a family at Christmas has taken on a whole new meaning. Now that Jenson has been through cancer twice, we look forward to the festive season so much more because we can have it all together, cancer free. We are determined to make as many memories as we can and just focus on all the positives.
For years, cancer never touched our family – it was always something that happened to other people. But then we lost my sister to breast cancer, and, since Jenson was diagnosed, there’s been my father-in-law, an aunt and a cousin. Cancer can happen to anybody, and we’re no longer frightened of it – after these two battles to save our son’s life, we feel we can take on the world.
Carolyn and her family are supporting the Cancer Research UK Kids & Teens Star Awards, in partnership with TK Maxx, which celebrate the courage of children and young people who have been diagnosed with cancer. To nominate someone to receive an award or to find out more about the campaign, visit: www.cruk.org/kidsandteens