Oliver, aged 4, was diagnosed with pelvic alveolar rhabdomyosarcoma, in August 2019. Two weeks after Oliver finished maintenance chemotherapy, a lump appeared in his neck and Oliver received palliative chemotherapy. However, in July 2021, the disease spread further throughout his body. No treatment options were available. Sadly, Oliver passed away in September 2021, aged 6.
Oliver had been a regular fit and healthy 4 year old boy, he was loud and into everything. In July 2019, we went to the GP when he’d gone off his food, was running a mild temperature and had gained a swollen tummy. The GP ordered some blood tests. However, a week later Oliver woke up crying in pain, so we went to the out of hours doctor, who could feel something in his stomach. We were then admitted to Pinderfields hospital where they carried out several more tests and scans. The following day we were told there was a tumour and that we would be transferred to Leeds Childrens hospital. Treatment was commenced for Non Hodgkin’s lymphoma but further results revealed it wasn’t a Non-Hodgkin’s tumour. We were stuck in limbo and it was unclear what the tumour was. In August 2019, we had the diagnosis of pelvic alveolar rhabdomyosarcoma. This then led to 9 rounds of intensive chemo, 26 sessions of radiotherapy whilst under anaesthetic and surgery. Whilst on main treatment Oliver spent a lot of time on the ward as practically every chemo caused him to become neutropenic which resulted in a temperature and admission to the ward.
However, all this treatment seemed to have a positive effect and we moved on to 12 months of maintenance chemo. We gained some normality in this time and Oliver finished his treatment in March 2021.
We had 2 weeks of life with no treatment and then we noticed a lump had appeared in Oliver’s neck and then came the crushing news that the rhabdomyosarcoma was back. It must have been hiding all this time and had spread. Based on everything our medical team had seen and how aggressive the cancer was, he was deemed incurable.
We then started Palliative care in April 2021 and he managed a few good months in spite of the latest chemo side effects. Sadly, the disease started to spread again in July and we had no other options available. He was given a few weeks but he wasn’t done fighting yet and managed 10 more weeks being at home surrounded by the things he loved.
Oliver passed away in September 2021.
Looking back, Oliver always managed a smile even though the side effects of what he called his ‘medicine’ were terrible. He became so used to going to the hospital that he loved going to see all his ‘friends’ in clinic and the ward. He loved causing chaos down the corridors, running around even with his pumps attached and showing them all his dance moves. He got through all his treatments and examinations by taking Teddy and his electronics, by immersing himself in his games, it was his escape and no matter how poorly he felt it didn’t stop him completing the latest game.
Oliver gave everything he had and the treatments that exist just aren’t good enough for our children. We need awareness and new research to improve treatments to ensure better outcomes so no more children have to suffer.
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