Ben's Burkitt's Lymphoma Story

First hospital visit 

Unfortunately, the next day, he woke up again, vomiting and feeling unwell. This was definitely the first sign that something else was going on, but at the time, I thought it was a little strange because it had never happened before.  I put it to the back of my mind and again, just continued to assume it was a tummy bug. The next day, he was no better and by Saturday night I was starting to feel that something wasn’t quite right, especially as I noticed his vomit now looked very different and like nothing I’d ever seen with any previous tummy bugs. He was also pale, had no energy at all and struggled to even walk to the toilet. This was when I decided to call 111, as I also suspected that he was dehydrated and needed some fluids. They advised that he needed to go to hospital, so I called a taxi and off we went to our local hospital. My husband stayed behind with our older son, Sam, who was 10 at the time and I’ll never forget telling him as he woke up with all the commotion ”Don’t worry, he’ll be fine, go back to sleep” words that would later haunt me for a very long time.

Initial diagnosis

By the time we got to our local hospital, it was the early hours of Sunday morning. They got him into an assessment room fairly quickly and had him on fluids. By this point he was also having some mild tummy pain so some surgeons assessed him for appendicitis and made the decision that he wasn’t a surgical case. It was decided that he had gastroenteritis, and he needed to be transferred to the other local hospital where he would continue to be rehydrated and hopefully go home either later on that day or tomorrow. I remember finding it weird at the time because he didn’t have any diarrhea, but he was responding to fluids and the anti-sickness medicine they gave him, so I still wasn’t overly concerned at this point. 

Needing surgery 

It was around lunchtime when we got to the other local hospital, and it soon became apparent that it wasn’t gastroenteritis as he stopped responding to fluids and started vomiting again. His tummy pain was now getting worse; he was restless, agitated and just not himself at all. This was when I began to worry. They decided that they wanted to ultrasound his tummy to see if they could see anything causing all of this. In the meantime, they decided to insert an NG tube to help stop the vomiting, as it was just getting out of control at this point. The ultrasound on his tummy showed that he had a bowel blockage, and he would need to be transferred to Leeds for the surgery. 

A turning point

The early hours of Sunday morning is when things really began to escalate. He was becoming more restless and agitated, his heart rate was higher than normal, he was breathing fast and he started talking nonsense, at one point he was repeatedly saying ”Happy birthday”. He was very confused and at this point I knew something was very, very wrong. They had just started to give him some morphine for his pain when he became unresponsive, his room became flooded with doctors but after they had gently shaken him and called his name, he became responsive again. At this point, I walked out of the room to briefly catch my breath, and I was ushered into a side room. The nurse explained that as I walked out of the room, Ben went into cardiac arrest. I couldn’t believe it was real life. This was just supposed to be a tummy bug. 

Transfer to intensive care

After 20 long minutes, they were able to bring him back but I was warned that he was incredibly poorly and unlikely to survive. I was also told that even if he did survive, it was very possible that he would have a brain injury due to lack of oxygen and he had a very high risk of having another cardiac arrest. Eventually, it was decided that they would try and stabilise him as much as possible and they would attempt to do the transfer to Leeds but instead of going to a ward, he would now be going to their paediatric intensive care unit. 

After some time, they were able to get him as stable as they could, and a specialist ambulance team from Sheffield arrived to help stabilise him some more. The ambulance ride was hairy; they had to stop the ambulance and then manually ventilate him the rest of the way because a blood vessel in his lung had burst and the tube was full of blood. I had never been so scared in my life. I really didn’t think that he was going to make it to Leeds at that point.

Something sinister

After arriving at the hospital, they were able to scan his tummy. The doctor explained that his bowel had become twisted, and they weren’t sure why.  He said that in a child of Ben’s age, it was incredibly unusual. He said it could be something simple, but it could also be something more sinister, and that’s when it occurred to me for the first time that cancer could be a possibility. I asked outright, ”Could it be cancer?”. he said ”Yes” but also reminded me that childhood cancer is rare, and it was likely to be something else. I believed him, it wouldn’t be cancer because cancer happens to other people and their children, not your child. At this point, Ben also had septic shock, which explained his confusion, rapid breathing and high heart rate earlier. We were told that he needed surgery yet also warned because of how poorly he was.

The diagnosis

After 2 weeks of been in hospital, we were suddenly called into a small room late at night. I remember the confusion so well; he was stable and improving, and I just couldn’t possibly think of what they wanted to tell us, especially so late. That’s when we heard the words no parent ever wants to hear ”I’m very sorry but all of his tests results have come back; he has cancer”. I was in shock, despite knowing it was a possibility, I just never thought that it would be the case. I met his oncologist that night who told me it was non hodgkins lymphoma and that further testing would be required, but they suspected Burkitt’s lymphoma, which turned out to be correct. The fact that Ben was still so fragile complicated his potential treatment. Through CT scans and a lumbar puncture, we knew that the only place the lymphoma was it in his bowel which was all removed surgically but they wanted him to have two rounds of ”mop up” chemo to be sure it would hopefully not come back. Because he was still so fragile, the chemo could cause more harm than good so we all agreed that we would put it off until he was stronger. A few months passed with no signs of it coming back with a new clear CT scan so the decision was made not to give him chemo at all. 

Getting Stronger

Ben did physio, got stronger, moved out of intensive care after 7 weeks to a ward, and soon we were talking about what steps we’d need to get him home. At this point, he was on TPN, which is IV nutrition, because since everything had happened, his small bowel hadn’t worked well at all and wasn’t absorbing much, even with a stoma. His surgeon decided that his best chance of going home was to reverse his stoma in the hopes that his colon would help with absorption and he’d be able to be weaned from TPN, which was the only thing keeping him in hospital at this point, almost 4 months later. 

Ringing the bell

Unfortunately, the very week it was decided he’d have his reversal surgery, his stoma started to swell and stop working and we received the devastating news that the cancer was back. This time, he was strong enough for chemotherapy and so at the end of June 2024, he started his first of 4 rounds. It was a massive blow. He had already been through so much; could his body really tolerate chemo too? I should’ve known, Ben beat the odds again and his oncologist was surprised at how well his body tolerated it, experiencing only minimal side effects. At the end of September 2024, Ben finished his last round of chemotherapy and rang the bell.

Making Progress 

In November 2024, Ben was finally able to have his long-awaited reversal surgery, and in December 2024, shortly after his 9th birthday, he was able to be weaned off of TPN. In January 2025, after 308 days in the hospital, Ben was finally able to go home. 

As of February 2025, he’s been in remission for 4 months and is doing well. He is still learning how to walk again after sepsis damaged his right leg, but he’s making progress every day.

Kirsty, Ben’s Mum, February 2025

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