In June 2020, just as the UK was exiting the first Covid lockdown, Sebastian started to become unwell.
At first, medical professionals thought it was a chest infection and after numerous trips to the GP, to Urgent Care and, eventually, to A&E at Kettering General, Sebastian was blue-lighted to the Paediatric Critical Care Unit at Queens Medical Centre (QMC) in Nottingham.
On the 4th of July the evening we arrived, we were told it as cancer, and four days later the diagnosis was confirmed as Neuroblastoma – a rare cancer that affects only one hundred children in the UK every year.
Due to the spread of the disease and brain damage sustained while Sebastian was in theatre for his biopsy and for his treatment line to be fitted, he was placed on a ventilator.
We remained in Intensive Care for the next eight weeks while Sebastian underwent a gruelling chemotherapy regime and fought back from the brink countless times.
At the start of September, in order to reduce the sedation he was on and attempt to get him extubated, we agreed for Sebastian to have a tracheostomy (a breathing tube inserted in his neck). We moved to the High Dependency Unit and began a tough programme of rehabilitiation to get Sebastian back home.
We eventually did, just a week short of six months after we were first admitted to hospital – initially to make memories while we could but then, after surprising news between Christmas and New Year that Sebastian had started to respond to his chemotherapy, to plan the next stages of his treatment plan.
Throughout 2021, Sebastian had more chemotherapy at QMC, followed by ten hours of surgery on the remaining tumour in his abdomen.
He had stem cells harvested at Sheffield Children’s Hospital and went back there to have them re-transplanted following high-dose chemotherapy that kept him back on HDU for most of May and June. During the summer holidays he had a programme of radiotherapy at City Hospital, Nottingham and then began six months of immunotherapy.
Sebastian managed to start Reception at Brambleside Primary during this time, and by the time his immunotherapy finished in the spring of 2022 he was well, healthy and happy.
In May 2022, Sebastian was admitted to hospital to have his tracheostomy removed as his chest had all but recovered too.
Less than a week later we journeyed to QMC to get the results of Sebastian’s end-of-treatment scans expecting to get the all clear, only to learn that a patch of active cells had appeared in his leg. Following this relapse, Sebastian once again had to endure a programme of chemotherapy – although the cancer didn’t spread and he was able to go to school throughout.
In January 2023, he was accepted onto a medical trial based out of the Royal Marsden in Sutton, but by now the cancer in his leg had started to grow. Sebastian then went through another long spell of radiotherapy but, by the time this had finished in June 2023, we learned – almost three years to the day since he first ended up in hospital – that it was back in his bone marrow.
Knowing we were running out of treatment options, we started to fundraise for potential treatment options available outside of the NHS. We spoke to doctors in Rome, Barcelona, North Carolina and at various other hospitals in the UK, but due to the fact that when neuroblastoma relapses into the bone marrow, the odds of survival are very small, we kept on facing dead ends.
During this time, Sebastian suffered from worsening pain and issues with his mobility; whenever we got the dose right something got worse and we needed to tweak it again. While Sebastian still started Year Two in September 2023, the treatment and disease had started to take its toll and make him more and more tired. Throughout the autumn we fundraised, but spent as much time ‘making memories’ as we could.
In the run up to Christmas, Northamptonshire united for “Orange Friday” to raise money for Sebastian and he was chosen to switch on Kettering’s Christmas Lights. After a difficult Christmas Day, we began a planned stay at Northampton General to try again to get Sebastian’s pain relief right, but more scans showed that his cancer had now spread even further.
Just three days after we decided not to pursue any further treatment options, Sebastian passed away at Northampton General Hospital on Sunday 28th January 2024.