Harry is home and very happy to be! It’s been a long slog again in Barcelona which was extended by a few days due to more reassessment tests (bone marrow op and MIBG full body scan with radiative isotope). The second and third infusions of the antibody for his immunotherapy was thankfully not as intense as the first. Although still horrible, Harry coped with the pain a little better and we know how to respond, the doctors and nurses also get to understand his reactions more each time and pre-empt situations with lots of medications. He did however suffer a different type of allergic reaction where half his cheek and gum swelled up..as I’ve said before you never know quite what to expect, but he was given adrenaline and this subsided after.
One of the hardest parts of this phase is that Harry has lost his appetite and has become so tiny again, on the days after the infusions he was not good at all, had very high temperatures and could barely walk. Seeing his tiny body having to sit in the shower because he didn’t have the strength to stand is completely heartbreaking. The doctors said that he has been particularly unlucky and has suffered more than most of his age, with the side effects and also the nasty viruses he has had. So now we are home for a little, the plan is to try to build him up again, and keep his spirits up. We were also told that he will need five cycles instead of four as this is the new protocol of the trial..the journey forever changes and emotionally it’s tough to manage for us all.
Our little superhero will bounce back though, I’m sure of it, he has already started to! I hope by writing these updates it not only saves me/Russ telling you all individually what is going on (!) but also that it may help others going through similar situations by my honesty and/or positivity, and of course to raise awareness of neuroblastoma and funds to help Harry and other children in the future.
Thank you for all your love and support as always, Nina 💙💛 xx