Harry had his infusion of the Omburtamab successfully yesterday. As terrifying as it was for all of us Harry (the bravest boy I know) remained calm throughout. We could barely breathe. His reaction was similar to the test dose last week with tingly feet again which I had to massage until he slept, but he also started to get a rash and the doctors gave him meds immediately so this thankfully stopped developing. The team in the hospital were amazing, they line up I don’t know how many medications for any eventuality and talk us through what they are doing, or translate what they are saying, sometimes even with some humour to lighten the mood which helps.

Harry was highly radioactive for hours ☢️ and we (Russ, Deb and I) had to take turns to sit with him wearing protective lead jackets, until the levels were safe for him to go home. Even now in the apartment I have to be so careful to protect myself. I am meant to stay 1-2 metres apart and have as little contact as possible for 2 days and he has to stay out of public places for 5 days.

So many things to think about, the shared toilet, utensils and crockery he uses, towels, clothes to be washed separately, the list goes on..thank goodness for the Nintendo Switch he plays with his friends! We are so glad that round one of two is finally over though, apart from lots of blood and fluid tests and scans, and never forget the amazing support we have had and continue to have, to get Harry here and give him this chance. He has put on some weight and is doing really well, managing to have some fun too and long may this continue. But all we want is to get this done and to get him back home to Oscar (and Cookie) and normality whatever that is, I know we have a way to go yet..


Nina x