A mum who trusted her instinct to take her son to A&E when he fell ill was left reeling when she was given his diagnosis. Two-year-old Jesse Osborn had been unwell on and off but despite taking antibiotics each time he never seemed to completely shake it off.
Meanwhile his twin brother Dexter was in glowing health while Jesse always seemed under the weather. And watching the two together made it all the more obvious to mum Polly that something was wrong.
But it took a trip to A&E for the family to learn what was making their little boy so ill. Within an hour he was being treated for leukaemia – and starting a tough fightback for health which included him having to learn how to walk all over again.
Polly told how Jesse was just a “normal toddler” growing up with identical twin, Dexter, and older brothers, Jimmy, six, and Kit, nine, at their home in South London. He was usually “full of beans” but then in the autumn of 2023, he began to suffer with one infection after another.
She said: “He would take antibiotics and would always bounce back, but just 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. I wondered whether he was anaemic, whether he just needed to eat a little more iron in his diet. But there was a niggle in the back of my mind that this could possibly be something more.”
But then one evening, Polly noticed a bruise on her son’s face that had not gone away and tiny spots on his leg. She said: “They were so small and so easy to ignore, but my gut was telling me to look into it further.”
Polly says she did the thing they tell you not to do – she started to Google his symptoms. She said: “”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.”
The following day she took Jesse to the GP. She said: “I didn’t want to be dismissed as some kind of neurotic mother, so I didn’t explicitly say what I suspected, but I did point out all the things that were concerning me. Jesse was referred for blood tests, but there was no appointment available for another 18 days.
“I called the GP back to see if they were comfortable with the wait, and they looked into trying to get 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 and if I still had my concerns in the morning, I would take him back.
“I woke up at 5am and we went back to the hospital. It was empty now 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.”
Polly said she hoped that having the answer would mean we could start working on getting Jesse better. But there were still many unanswered questions including what type of leukaemia it was or how advanced it had got.
Jesse was moved from A&E to a ward at Kingston Hospital, South West London where the family spent the next six days in what felt like limbo. The tot underwent transfusions and was on antibiotics for all sorts of different infections as his parents took turns to stay with him, swapping over in the evening to spend time with their other children at home.
The two-year-old had to have a port fitted and he underwent a lumbar puncture and bone marrow biopsy before the diagnosis of B-cell acute lymphoblastic leukaemia (B-Cell ALL) was confirmed and he was transferred for treatment at The Royal Marsden Hospital.
Polly said: ““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 a biopsy of 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 for four to five weeks through December.”
But the fight for health was not smooth and the tot became quite unwell. By the time the family was finally able to return home on around December 18, Jesse was feeling the effects of the chemo.
He was readmitted to hospital within a few days with a fever but did manage to get home for Christmas Day itself with the family living in a “sort-of lockdown situation” to protect him, as his immunity levels were so low.
Just after Christmas, the youngster developed liver problems and was transferred by ambulance to Kings College Hospital where he was admitted to the High Dependency Unit under the care of the liver team. He was diagnosed with veno-occlusive disease (VOD), where the small blood vessels that lead into his liver and are inside the liver had become blocked.
Polly said: “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 and because of his poor liver function, it caused dramatic muscle wastage, to the point that he lost function in his arms and legs and could barely hold his head up.
“He was so weak at this point that the decision was taken to stop his chemo and 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. After nine days in the High Dependency Unit, Jesse gradually started to improve.”
But he would need to learn to walk all over again as he had virtually no mobility at all. He also developed sepsis and tests showed he had probably also experienced a bowel infection.
However he was soon able to start having physio. While the family had spent most of January in hospital, Jesse was now fitter and stronger and managed to cope reasonably well with the treatment.
His treatment was switched to a different cocktail of drugs with each round lasting five or six weeks. He has just completed the final stage of his treatment known as Delayed Intensification.
For the next two and a half years, he will be on a maintenance regime consisting of oral chemo and lumbar punctures. Polly said: “He is still building up his strength and compared to his twin brother, we can still see a difference. But apart from the fact that he is bald and a little tired, he is back to being full of beans, and hopefully the worst is now behind him.
“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. At points, he struggled to go to sleep at night and rejected the double buggy, as if it was a signifier of Jesse not being there. When we took him to the hospital to see Jesse, it was sometimes hard – Jesse would want to cuddle him, but he was afraid of all the machines connected to his brother.
“Another time, he would want to play with Jesse and Jesse just wasn’t feeling up to it. The older boys had a lot of support through their school, but for the most part, it was about managing everyone’s expectations.
“Now that Jesse has finished the worst phase of his chemo, we all want to celebrate his remission and the fact that he is 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 will see Jesse’s cousins running a variety of distances ranging from one to 10km. They then all hope to finish together at North Sheen Recreation Ground on July 6.
Jesse’s gruelling treatment took its toll and his spell in high dependency meant he has had to relearn to walk. But he hopes to join in and run the last 100m, with a little help from his big cousins.
Polly said: “He is only able to do this as a result of the research done by the ICR over the years and the support of his incredible medical teams, for which we will always be grateful. 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 have chosen 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.”
The Great Cousin Run is raising money for The Institute of Cancer Research whose scientists are pioneering safer, kinder and more effective treatments for children’s cancer. To support Jesse and his cousins, visit: https://justgiving.com/page/Jesse
