Harrison's T-Cell Lymphoblastic Lymphoma (Non-Hodgkin's) story

Initial concerns

It all started with what I thought was constipation. Harrison said he felt so full and didn’t think he was emptying whenever he went to the toilet. After a trip to the doctors where I mentioned he wasn’t breathing very deeply, the doctor prescribed Movicol. It was a battle to get him to take any of it, even after trying a different flavour. This led to a trip to the pharmacy to explore other options, where we purchased lactulose.

Escalating symptoms

After a day, there was still no improvement. I noticed his breathing was shallow, and he wasn’t able to walk as fast or as far as usual. I decided to call 111 for advice. After several calls back and forth, I made the decision to take him to our urgent care centre. By this point, he was very tired and weak, and unusually, he fell asleep while waiting to be seen. When we finally saw the doctor, he referred us to our local hospital. Again, I mentioned his breathing, but nothing was checked. By this time, he was unable to lie flat and had been sleeping propped up with four or so pillows throughout the day. He couldn’t explain why lying flat was uncomfortable, but he said it just was. He was also getting sweaty throughout the night. Before taking him to urgent care, he had complained of a sharp pain at the tip of his left shoulder, which I now know is a serious sign that something is not right with the lungs.

Urgent hospital visit

Off to the local hospital we went. After a 15-minute wait, he was triaged. The triage nurse was our saviour; she listened to what I said about his breathing, lifted up his shirt, and said, “This is not normal; he needs a chest X-ray.” He was put on a nebuliser, and within minutes, he had a chest X-ray. I have no clue how to read X-rays, but even to my untrained eye, I could see something was seriously wrong as you couldn’t define two lungs. His left lung was a complete white-out.

A turning point

Things escalated quickly, and I knew something serious was wrong with him. I felt terrible, as he hadn’t wanted to go to the hospital, and I had promised him it would be fine—just a quick check-up, and we’d be home before he knew it! I couldn’t have been more wrong. Within an hour, Harrison was in the operating room having a chest drain inserted, and two litres of infected fluid and blood were instantly drained off. In total, eight litres were drained over three weeks. This was on 27 November 2022; he was transferred to PICU at a local hospital with lights and sirens and after two days, he was transferred to PICU at another hospital, again via the same service.

Devastating diagnosis

It was at this hospital that I received the devastating news: he had cancer. It took a few more days to receive the final diagnosis of T-Cell Lymphoblastic Lymphoma (Non-Hodgkin’s), with the mass located in his thorax on 30 November 2022. His treatment started right then and there. There are no words to describe how it feels to hear those words about your beloved child. But you have to pull up your bootstraps and crack on. That’s exactly what I’ve been doing, and Harrison has been an absolute superstar.

Ongoing challenges

Since the diagnosis, things haven’t been easy for us. Harrison has a marker in his blood that makes him susceptible to blood clots. He has developed a few along the way, which has meant he lost the ability to walk even a few steps; stairs became an impossibility. I was tasked with injecting him daily with blood thinners, which turned into a daily battle. The injections increased to twice daily as he developed more clots. This period of time saw us in our darkest days, as it was a constant struggle to get him to allow me to do the injections. We lost so many hours trying to get them done, which strained our relationship. Thankfully, due to having a nasal gastric tube fitted because he stopped eating, he gained enough weight to be transferred to oral blood thinners. That day is etched in my mind as life became easier; we gained hours back in our day, and peace was almost restored!

Returning to normal

Over the last 18 months, Harrison has gradually returned to school. He was thankfully provided with a tutor for the last academic year, as he wasn’t well enough to attend school. By summer, he was attending school for two and a half days a week and receiving home tutoring for an additional six hours a week. This arrangement enabled him to catch up with his schooling while also attending various hospital and physiotherapy appointments.

Beads of Courage

Harrison is now in Year 6, and since the start of this year, he has been managing to attend full-time, which he absolutely loves. Most importantly, he is seeing his friends and enjoying being a normal 10-year-old. We take each day at a time. There have been many bumps along the road so far, but we’ve made it through and continue to do so. One thing that has kept us both going along this horrendous journey is the Beads of Courage. At the end of each day, before bed, we sit together and tick off what procedures or treatments he has had that day. Harrison loves helping the play specialists count out the beads he needs, and together we thread them in the order of the treatments and procedures.

Looking forward

When we reached the end of the intense phase of treatment, I recall Harrison saying he missed the hospital. He had so many admissions that it had become his safe space, and he felt at home there. The team of nurses and doctors were all incredibly kind and friendly, which made him feel calm. Harrison’s health has stabilised since he’s been on maintenance treatment, which has allowed him to get back to a more normal routine. Due to the numerous bumps in the road, Harrison has a grand collection of beads. When we have visitors, it’s lovely to see him show off his beads and explain to them what they are and what they represent. He holds his head high when explaining his courage beads and proudly shows off his favourites.

A long road ahead of us

When things get tough for him or us, we pick up his beads and talk about them, reminding each other just how far he’s come. We share our favourite ones and why they are special to us. We still can’t remember what each colour means; that’s our challenge to ourselves. We have a long road ahead of us, but I can say that the Beads of Courage make that journey easier for us both. Thank you so much for the amazing work you do; it really means the world to us.

We are fortunate enough to have met the play therapist at the hospital who explained how this amazing programme came to the UK.

Victoria, Harrison’s Mum, September 2024

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