Jesse was just a normal toddler. Along with his identical twin, Dexter, and older brothers, Jimmy, six, and Kit, nine, he was usually full of beans. But in the autumn of 2023, he started suffering from one infection after another. He would take antibiotics and would bounce back, but he never seemed quite right to me. There were low-grade fevers that would come and go, he was very pale and became increasingly tired. Being a twin, we had our ‘control baby’ and I could tell that compared to Dexter, he just didn’t seem well.
There was a niggle in the back of my mind that this could be something more serious. One evening, I noticed a bruise on his face that had not gone away, and tiny spots on his leg. They were small and easy to ignore, but my gut told me to look into it further.
I started to Google his symptoms – something I know many advise you should never do! As I read about other people’s experiences online, it triggered something inside me. When my husband, Tom, came home from work, I burst into tears and told him that I thought Jesse had leukaemia. He was utterly shocked.
I am not prone to health anxiety, but the following day I took Jesse to the GP. I didn’t want to be dismissed as some kind of neurotic mother, so I didn’t explicitly say what I suspected, but I pointed out all the things that were concerning me. Jesse was referred for blood tests, but the first available appointment was in 18 days. I called the GP back to see if they were comfortable with the wait, and they said they would look for an earlier appointment.
But my instinct told me this was more urgent, so that evening I took Jesse to A&E. It was 8:30pm and the waiting area was heaving. I decided to go home, thinking that if I still had my concerns in the morning, I would take him back.
“It came as an enormous shock to hear my child had cancer”
I woke up at 5am and we went back to the hospital. It was empty and we were seen very quickly. Again, I did not explicitly tell the doctor what I suspected was wrong with Jesse, but in running through all his symptoms and pointing out his bruises, I think he knew what I was fearing. Jesse had blood tests – and within an hour, he was diagnosed with leukaemia.
Even though I had half suspected it, it still came as an enormous shock to hear my child had cancer. There was a part of me that was a little relieved to know that I was not going mad and that my instincts had been right. I hoped that now we had an answer, we could start working on getting Jesse better. But at this stage there were still so many unanswered questions. We did not know what type of leukaemia this was, or how advanced it was.
We were moved from A&E to a ward at Kingston Hospital and spent the next six days in what felt like limbo. Jesse had lots of transfusions and was on antibiotics for all sorts of different infections. Tom and I took turns to stay with him, swapping over in the evening to spend time with our other children at home. Jesse was taken to St George’s Hospital to have a port fitted and he also underwent a lumbar puncture and bone marrow biopsy. After this, his diagnosis of B-cell acute lymphoblastic leukaemia (B-Cell ALL) was confirmed, and he was transferred for treatment at The Royal Marsden hospital a few days later.
His prognosis was fortunately pretty good. We were told that he was at lower risk due to his age and the fact that the number of leukaemia cells found in his bone marrow was relatively low. There was also no evidence of disease in his spinal cord. He had his first dose of chemotherapy, after which followed an intense period of treatment through December. This involved treatment with two chemotherapy drugs, PEG-asparaginase and vincristine, as well as steroids. Jesse became quite unwell and by the time we came home on around 18 December, he was feeling the effects of the chemo.
He was readmitted to hospital within a few days with a fever, and although he made it home for Christmas Day, we had to live in a sort-of lockdown situation to protect him, as his immunity levels were so low. Shortly after Christmas, Jesse developed liver problems and he ended up being transferred by ambulance to King’s College Hospital, where he was admitted to the High Dependency Unit (HDU) under the care of the liver team.
He was diagnosed with veno-occlusive disease (VOD), where the small blood vessels inside and surrounding the liver had become blocked. The medical team told us they believed this had been caused by a rare reaction to the chemotherapy drugs Jesse was on. At this point, he was still having chemo but because of his poor liver function, it caused dramatic muscle wastage. He lost function in his arms and legs and could barely hold his head up. He was so weak that the decision was taken to stop chemo. All his treatment was postponed for a month while they got his liver function back on track and he was deemed fit enough to continue.
“Jesse's gruelling treatment had taken its toll and he had to relearn to walk”
After nine days in the HDU, Jesse gradually started to improve. But he would need to learn to walk all over again as he had virtually no mobility at all. Around this time, he was also treated for sepsis and tests showed he probably also had a bowel infection. Jesse started having physio and was taken off the PEG-asparaginase. We spent most of January in hospital, but he became fitter and stronger and managed to cope reasonably well with the treatment.
He was moved onto a different cocktail of drugs, with each round lasting five or six weeks. In June 2024, he completed the final stage of his treatment, which is known as Delayed Intensification. Since then and for the next two and a half years, he will be on a maintenance regime consisting of oral chemo, lumbar punctures and regular monitoring of his liver.
So far, he has coped pretty well and we have thankfully had no unexpected hospital stays. We were able to enjoy what felt like a relatively normal summer. To facilitate Jesse’s treatments and check-ups, we took several short breaks throughout the summer, always making sure to keep the local hospital aware. This meant we reduced the risk of having to cancel any plans last minute and everyone was able to enjoy themselves after what had been a really difficult year.
We are extremely lucky that we have a big network of family and friends who have been a huge support throughout. It has certainly been a difficult journey, not just for Jesse, but for his brothers too. Dexter, in particular, found it all very unsettling.
In July 2024, shortly after Jesse had finished the worst phase of his chemo, we wanted to celebrate his remission and the fact that he was up and running again. He has lots of cousins, ranging in age from one year to 16, and they wanted to do something too. We decided on something proactive and joyful, a family picnic combined with a charity run, and something that Jesse could join too.
The Great Cousin Run saw Jesse's cousins running a variety of distances ranging from 1km to 10km, raising close to £15,000 for The Institute of Cancer Research (ICR) in the process. Jesse's gruelling treatment had taken its toll and his spell in the HDU meant he had to relearn to walk. But he was able to join in and run the last 100m, with a little help from his big cousins. He was only able to do this thanks to research done by the ICR over the years and the support of his incredible medical teams, for which we will always be grateful. It was a lovely and very emotional moment for us all to see him cross the finish line.
“It’s great to see Jesse getting stronger every day”
Now, a year on from his diagnosis, he is still building up his strength. His hair has grown back, and he and Dexter look more like twins again. Jesse has not completely caught up with him in size. He still gets fatigued, often requiring a nap during the day, but overall, he is pretty much back to normal. He is back at nursery two mornings a week which he loves and has started swimming lessons to build up his strength and repair the muscle wastage. The daily oral chemo knocks him out, but it’s great to see him getting stronger every day.
With Jesse being a twin, we have had the unique perspective of being able to see the very real damage that chemo can do. Of course, we are so grateful for all the treatment and care that Jesse has had, but seeing him compared to his twin brother has made us hyper-aware of how brutal his treatment has been.
This has made us all the more mindful of the importance of developing kinder and more successful treatments for cancer, treatments which don’t just focus on the end result, but also on the process of achieving that more safely. The idea of having more options available to cancer patients, even for those with the most advanced cancers, gives us hope.
“Huge developments are still needed going forward”
I am aware of the very great strides that have taken place in leukaemia research in the last 20 or 30 years. When I was a child, leukaemia was a very scary thing and I know that having benefitted from his treatment as part of the ALLTogether trial, the outcome for Jesse only looks as positive as it does thanks to the research that has gone on.
But there is still a long way to go. While Jesse was being treated at The Royal Marsden, we sadly met other families whose children did not have such a good prognosis. Huge developments are still needed going forward.
We chose to support the ICR because we are so grateful for the research that it has done and continues to do for all cancers. It is the incredible work of Professor Sir Mel Greaves, who has pioneered childhood cancer research since the 1970s, which has meant that the survival rates for ALL have dramatically improved.
Having witnessed first-hand how damaging and brutal chemo can be, we can only hope that continued research brings about kinder treatments for children like Jesse in the future. We know that relapse is possible, but for now, we are positive and hopeful for Jesse’s future, celebrating the fact that he is back to being full of beans, with hopefully the worst now behind him.
We are world leaders in the study of cancer in children, teenagers and young adults and have made huge strides over the past decade in improving treatment options for children with cancer.
This progress is made possible by long-term investment in this area of research, including from our supporters and family charity partners.
But treatment options for children remain limited. Your regular donations will help us develop the new, kinder innovative treatments that are urgently needed for children with cancer.