Archie is an identical twin. They were born at 32 weeks due to getting TTTS at 16 weeks gestation. Archie had stopped growing at 31 weeks so had a planned C-section at 32 weeks.
Archie was born 2lb 4oz, his twin brother was 4lb. They spent 6 weeks in NICU whilst they developed feeding, in this time Archie had to have a blood transfusion for prolonged jaundice.
Archie developed well and showed no problems until December 2018 when all 4 of us got a flu type virus which Archie couldn't shake off. He was very lethargic with vomiting and temperatures. GP advised us it was a virus and couldn't give us anything for it. Archie then stopped using his legs, he wouldn't put any weight on them and wanted to be carried everywhere. After a few trips to A&E we insisted on further scans and checks and an ultrasound found a mass. We were transferred to GOSH for further checks and they advised us that it looked like neuroblastoma but he needed a biopsy to confirm. We were transferred to Addenbrooke's, as it is closer to where we live, his biopsy confirmed high risk neuroblastoma. Archie started chemotherapy the next day.
Archie started with rapid COJEC chemotherapy, half way through this he developed severe sepsis which resulted in emergency surgery to remove his hickman line and a couple of nights in PICU. A scan following the rapid COJEC showed only slight improvement in bone marrow levels and the levels of cancer hormone in the urine. There was no change to the two tumours or the other lesion sites on his bones and skull membrane. Archie went on to have 5 courses of a different chemotherapy in the hope that would shrink the cancer, but unfortunately this hasn't worked either.
Archie has recently had his stem cells harvested to open up options of further treatment. We are currently waiting on a decision from our consultant and the advice board of neuroblastoma as to what the best treatment will be going forward.