Prior to his diagnosis, Sean had been in and out of hospital for months. He first went to hospital in March 2023, after he woke up unable to bear weight on his left leg.
Initially, A&E thought it was a viral hip infection and sent him home with Nurofen, and the symptoms cleared up within about two weeks. However, by mid-May 2023, he started limping on his left leg, and this limp persisted until his diagnosis. During this time, he began experiencing high temperatures at least twice a week, often for no apparent reason. He also frequently picked up infections and had a large black bruise on his chin that wouldn't heal.
Sean also experienced night sweats and cried in pain at night. He often fell asleep during the day and lost his appetite, requiring me to syringe liquids into him. In May 2023, an A&E doctor flagged him for hospital admission due to potential leukaemia symptoms. However, when admitted, the medical doctors considered it the least likely diagnosis and ruled it out.
Despite having all the classic symptoms of leukaemia, we were told that it was likely just viral infections and that he was a ‘COVID baby’ with low iron due to a poor diet. His blood tests showed abnormalities starting in May 2023, but this was unfortunately not flagged. In July 2023, they began investigating for juvenile arthritis and referred Sean to a different hospital in August 2023. After new blood tests, we were called to bring him back to the hospital, as they suspected leukaemia.
Sean was diagnosed on August 15, 2023. By that point, he was extremely ill. He had lost a significant amount of weight and required morphine for his pain. It felt as though the light in his eyes had disappeared; he spent most of his time either sleeping or crying from the pain. I felt like I was watching my son fade away.
He received a central line and began intensive chemotherapy treatment. Thankfully, he responded quickly, and within the first month, there were no signs of leukaemia in his bone marrow.
The challenges and impact of treatment
Sean is currently undergoing maintenance chemotherapy and is due to ring the end-of-treatment bell in October 2026. This experience has been traumatic for him. He endured significant pain and found the numerous tests and medical procedures challenging. However, he’s adapted quickly to his situation. His life largely revolves around the hospital and is obsessed with playing doctors.
Sean has asthma, which has complicated his treatment, as he’s been frequently admitted to hospital for chest infections. He refers to his room in the hospital as his ‘other bedroom’ because he has spent so much time there.
Nothing can ever prepare you for watching your child suffer and hearing them beg for help while knowing there's little you can do. Since his diagnosis, Sean has become very anxious and increasingly attached to me. As a parent, I don’t think I will ever feel relaxed again. I’ll always be on the lookout for signs of relapse.
Sean and his siblings
When Sean was diagnosed, his younger brother was just 18 months old, and his sister was only four weeks old. It was difficult being separated from my younger children during the times Sean spent in hospital at the beginning of his treatment. I also worried about bonding with my newborn.
Additionally, I was concerned about Sean’s relationship with his siblings. Thankfully, Sean has a close relationship with both his siblings and his cousins, which has really helped him through his treatment. I also have great support from my parents and siblings.
Sean's diagnosis has significantly affected the entire family. Even now, as he undergoes maintenance treatment, he has numerous clinic appointments. One of the major side effects of his treatment is leg weakness, which means he’s not as physically advanced as his three-year-old brother.
The emotional impact on Sean has also been a big factor. He shows remarkable strength and never complains, handling everything with resilience. Having just turned five, he’s now much more aware of his treatment.
The haematology department at the Royal Belfast Hospital for Sick Children has been fantastic with Sean and our entire family. They’re incredibly supportive and truly care about the children, going out of their way to help them feel special. Sean loves seeing and talking to all the staff; he has grown up with them and they have become a significant part of his life. It’s been a long road, but Sean has only about 18 months of treatment left. He’s come so far, and we’re looking forward to putting this all behind us and enjoying a normal family life.
September 2025
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