They couldn’t find a single case like Orla’s
We did everything we could to make Christmas as magical as we could for the girls. We had to spend it at GOSH, but the Young Lives vs Cancer charity arranged accommodation so we could be up there all together as a family. On 16 January 2023, Orla went back in for the fourth chemotherapy cycle, and they had to change one of the drugs because it was damaging her high-frequency hearing, resulting in partial hearing loss. We were due to do cycle five in February, but they skipped it, because of concerns over the MYCN amplification and what it means for her tumour. Her consultant was working with other specialists to try to find out if anybody else in the UK or Europe has this tumour with the same amplification, without the TP53 mutation. They couldn’t find a single case. Because of that they didn’t know whether they were over or under treating it. Her consultant chose not to expose Orla to any more toxicity from the induction chemotherapy. Instead, the specialists agreed to start her on the high-dose chemotherapy on 20 February, which she had to have because she was too young for radiotherapy. It involved a really high dosage over about six days, which wiped out her bone marrow and she needed her stem cells returned to her straight after. They estimated wanting to keep her in hospital for about eight weeks for recovery, and because she was immunocompromised, so there was a really high risk of infection.
She did amazingly well during the chemotherapy. She had hardly any side effects, unlike before. All the medical staff said she was doing incredibly well. After about five weeks the only thing really keeping us in the hospital was to re-establish Orla’s feeding, and we were told if that was sorted, we could be going home by the end of the week. She’d had to be on gut rest for a while, and was being fed via a Hickman line, but was gradually having more time off the machines, and was being fed primarily via a line at night.