Exactly 12 months ago today, I took Isita into the Westbourne Grove Medical Centre with pain in her back and hips. This was her fifth visit in a month and the GP referred her immediately to paediatric A&E at St Mary’s Paddington. By that afternoon I was being taken aside by a kind radiologist to be told that she most likely had a neuroblastoma and would be going to Great Ormond Street.
Those first days in hospital seem impossibly distant. It has been a horrible year, but that doesn’t mean there haven’t been good bits, especially the spirit that Isita and Jamie have demonstrated, the amazing support that all our friends and family have given us, and the care we have all received at GOSH.
We are now working on getting Isita home. Our TPN training starts on Tuesday, so she could be discharged on about 19 January unless one of the next stages of treatment intervenes. She is very excited about it.
Our attention remains focused on Isita’s gut. This evening Jamie and I went to the UPS depot in Kentish Town to pick up some special all-natural paediatric formula. It was supposed to be delivered this morning, but the driver never knocked or called and instead falsely claimed that he hadn’t been able to collect funds for customs duty. Disgraceful. Never use that crappy company if you want something important delivered…
Anyway, we are going to slowly introduce the feed in the hope that Isita’s gut will like it better. It is actual pureéd food while what we are giving her now is glucose syrup combined with pre-digested amino acids. Yum!
Apart from the small amounts of feed through her nasal tube, Isita has not eaten for more than six months. Today the doctors said she could suck lollipops – the first proper thing she has tasted in all this time. It’s almost a shame she doesn’t have much of a sweet tooth.