15/08/2024
New York Visit 1 Complete 😀
Hi everyone, for the past month we have been in New York for the start of Ava’s treatment.
It was a bit rushed organising after receiving her last scan results and having her Hickmann line removed a few days before we were flying but we made it and all went well.
The day after arriving we had our 1st consultation with Ava’s Dr at MSK, they explained everything to us regards the vaccine and which arm of the trial she would be on.
The following day she had to have her bone marrow tests done which, at MSK is done differently, they sample from 4 points and, as you can imagine, she was a bit sore after this.
Ava then started the vaccine trial the following week, receiving one dose each week for 3 weeks, she also has to take an oral medication each day for 2 weeks on and off for 6 the next months as part of the trial.
So far everything has gone well with some minor side effects to the vaccine itself, mainly some pain at the injection site, redness and swelling but they subsided after 48hrs. Nothing compared to the treatment and side effects she has endured to this point.
Over the last 18 months we have certainly had some bumps in the road with the lasting side effects to Ava’s overall and continuing treatment, this last month has been no exception. Ava routinely gets peripheral neuropathy pain (nerve pains), fatigue and behavioural/emotional challenges. However, we have tried our best to make positive memories along the way and make the most of our time in New York to allow the kids to look back and remember their favourite bits; “days in the big park”, “Dinosaurs in the museum”, ”Being a princess”, “Swimming at camp”.
As always, thank you everyone for your continued support as this trip and future treatments wouldn’t have been possible without it. ❤