Hi. Harry had his first round of 3F8 immunotherapy as planned in Barcelona last week and it has been tough..so much tougher than we thought. After daily injections for five days before, Harry then had three infusions on the Monday, Wednesday and Friday, with double the dose of the injections and multiple medicines to take each day, and after the pain he endured on the first day it was a challenge to get Harry to understand and accept that he must go through the same ordeal again.
After a long wait, the 30 minute infusion finally started and we were surrounded by a doctor and three nurses on hand. Now I see why so many. Harry had pretty bad pain all over his body and I and the nurses had to react quickly to him to help cope, we held ice packs all over parts that hurt or were hot and they kept him well dosed up on morphine, oxygen and other meds. He didn’t have any other reaction though so that was a huge relief, apparently it could have been a lot worse! His blood pressure went so low it was unreadable which was pretty scary but he was given fluids to bring it up and monitored closely for two hours after, and they said that was normal too.
The second infusion was horrible too, similar to the first but pain in different parts of his body, more intense but over quicker. The third was somehow a lot calmer and seemed easier for Harry. He was (he told me) focussing hard on finishing so he could get home and to our dog Cookie..The determination in his face was quite something!
But to see your child in so much pain is horrific, when all you can do is comfort them and read their reaction to make sure they are given what they need. I struggled to hold it together at times but as a parent that’s what you have to try and do. My mum bless her was there for two of the days with me and she had to watch not only her grandson go through it but also her daughter too. Sometimes I forget that.
We thought Harry would be better than he has been in between the infusion days but he had quite a lot of pain, wasn’t eating much and felt really fragile and also a cold to deal with.
Since we have been home sadly Harry has been really unwell. He has been in and out of hospital with persistent high temperatures, diarrhoea, barely eaten for 10 days now and has a bad cough and cold, he has had numerous tests and went back in to hospital again yesterday with Russ and was told he had to stay in for the weekend. He’s devastated as all he wants to do is enjoy his Christmas. And so do we all. They have finally identified a virus though so at least we now know what it is, and that it’s not all a side effect from the immunotherapy. Hopefully he will soon start to feel better and be home for Christmas.
I feel terrible for him having to go through this so many more times, I am completely drained, but at the same time Russ and I know and agree that we have to do this.
A very long update (sorry!)..thank you for all your support and love.
Merry Christmas! 🎄