Firstly let me say I am sorry for not posting an update for a while Russ, Deb & I have had many messages and calls and I know a lot of people also ask family and friends how Harry is and how things are going..it’s not that things have been terrible as some may have feared, in fact Harry is doing remarkably well considering.
So..after Harry’s first round of Omburtamab radioimmunotherapy treatment he has had some relatively normal time. It feels like we have all spent a long time away but we did manage to get home for some family and friend time too, and Oscar has been with us for most of the last 6 weeks (home or in Barcelona) thank goodness as we missed him terribly before. Harry’s bone marrow has taken some time to recover however and we have had regular visits to hospital alongside his weekly or bi-weekly blood tests and clinic visits. On the outside Harry appears well, he has put on 4kg ,is much stronger, his hair has grown back and he continues to smile, play and have lots of fun, and he is well..But following the intense treatment, he has had to have multiple platelet and blood transfusions to keep him safe and the dreaded GCSF injections (to boost his white blood cells/immunity). He does get tired and there are some other issues to deal with, aches and pains, nosebleeds and more, but we are so relieved how well Harry is coping so far. He quite likes it in Barcelona I think! Those dreaded injections I mentioned are now a million times easier for him and his medicines are the same, he can often have so many in a day I still hold my breath at times and pray he won’t kick off like he used to! He is clearly growing up & bless him still as cheeky as ever and one incredibly resilient boy.
There have been serious doubts as to whether Harry would be eligible to have the second (and last) round of the Omburtamab which around half of those on the trial don’t have.This was meant to start several weeks ago now, and we have found out in the last few days that his bloods are stable enough just within the time limitations according to the protocol of the trial, so we can now go ahead.
Thank you for all your continued support and kindness.
Love Nina xx