Hi all, firstly I’d like to thank you for such lovely comments and the many messages that I/we have received since we have been in sunny Spain. Your words and kindness always bring a smile or sometimes a tear (in a good way) and I know we have such incredible support for Harry and the family.
It’s been a very mixed 10 days here so far, with lots going on. The most important news is that his tests have all been clear so far so Harry remains with NED (no evidence of disease) of Neuroblastoma, which is what we need for him to be able to receive the 8H9/Omburtamab. Russ and Oscar came over with us to help settle us in and to see where Harry was going to be treated. I think that was really good for Oscar, despite it not being the half term ‘holiday’ that he may have preferred! We had visits (some long) to the hospital almost every day but did manage to have some time each with both boys.
It has been incredibly daunting being here in Barcelona on my own with Harry, but we are slowly finding our way, and me my confidence living in a strange place and dealing with all that is going on and the constant fear that I know will never go away. It’s hard being away from home and all that we know and love, especially Oscar and Cookie (who Harry misses terribly already) but we FaceTime every day and Oscar will visit again soon.
Harry had the ommaya reservoir placement today, along with his new port-a-cath (instead of the Hickman line that had to be removed last week). It was a very long and difficult four hours but all has gone well thank goodness. Harry amazed me yet again with his calm demeanour today, he knew exactly what was happening and barely bat an eyelid bless him. That gorgeous smile is just always there! I don’t know how he does it but it definitely gives us strength.
Harry hasn’t yet been able to swim as he gets so cold being so tiny, but I did manage to get him half way in the sea briefly yesterday! There is plenty of time though..and it’s lovely to now be staying near the beach, I think it’s good for the soul.
We are really looking forward to Grandad and Grandma (Dad and Sally) visiting us tomorrow when we get back from hospital, and Russ will be back next week with Deb before the Omburtamab starts.
I will update again soon, but I’m happy to say we are another step forwards!
Love from Harry and me x