Our son was diagnosed during the peak of the COVID-19 pandemic in May 2020, when he was five years old. He’s been unwell with lethargy and an on/off fever and didn’t get better.
He was tested for COVID as I work for the NHS, and he was negative. Finally, we got a video call with a GP and two weeks after he first became poorly, he was sent to Harrogate Hospital for assessment. They told us shortly after that they wanted to speak with us both. When my partner arrived, we were told they were transferring us to the Leeds Oncology Ward as they thought Aspen had leukaemia. It all felt like a nightmare, and we held him close as his bloods were taken and cannulas inserted.
I had to go home with my youngest child because I was still breastfeeding and only one parent was allowed to stay. We had a Zoom call with his oncology consultant to confirm his diagnosis of T-cell acute lymphoblastic leukaemia. The treatment would be for a minimum of three-and-a-half years and the most intensive part would be over the first eight months.
Our lives were turned upside down and I still couldn’t see Aspen for another 10 days due to COVID guidelines. I kept busy with his little brother and tried to stay positive, but the nightmare was a reality. He started treatment immediately: different regimes of steroids, anaesthetic procedures for spinal chemo and several different IV chemotherapies. He came home after two weeks in hospital, then we were back in for outpatient treatment two to five times a week.
I took the year off work and our youngest stayed off from nursery to reduce any risks of infection to Aspen. The first eight months were very up and down. He required a more intensive regime, and it was devastating to see our little boy change so much. Steroids made him so unhappy and lethargic, while he had aches and pains and required a wheelchair to travel with. His long hair thinned and eventually fell out and he stopped eating for a week at one point, which meant he had a nasogastric tube fitted to increase his strength.
He had surgery to fit a portacath for his treatments and we supported him with the many needles and procedures he needed. After the initial intensive phase, he started maintenance treatment and life with cancer became our ‘new normal’. Not long went by without overnight stays due to fevers or concerns over other risky illnesses.
Thankfully, we have an amazing family that supported us throughout and helped with childcare. Our employers were also supportive, allowing Aspen’s dad to have time off for appointments so we could share the load. Friends were thoughtful and sent messages of support and care packages.
Aspen completed his treatment in September 2023 and we had a big party to celebrate. It still feels a little strange, again adjusting to our new normal. There’s no reliance on chemotherapy, just trust that the treatment has done its job. He has fewer appointments now and we await surgery to have his portacath removed. We had an amazing holiday to Florida to celebrate the end of treatment and it was the first time we felt like a normal family in so long. Aspen will continue to have checks and, as parents, we’re learning to heal after the trauma we’ve experienced and can only hope he stays well.
We’re so grateful to his team who have kept him here and the research that supports the treatment plans. However, we need to develop kinder treatments so that no child has to suffer from their effects.