T+67. Day 12 at home.
Tomorrow we head to GOSH for our first post BMT clinic. We have spent so many hours in Safari Outpatients in the last year but it does feel good to know that the actual transplant that we have discussed at all the previous appointments has taken place and now it’s about protection as the immune system recovers.
Herbie has continued to enjoy being at home and with school out we have all felt the benefits of lazier starts to the day. That said, meds are still due each morning at 8am and guitar lessons, Rock School etc continue throughout the holidays and of course we have the daily community nurse visits for the iv’s.
Herbie had what looks like his last letter from Hope this week. He was a little sad but understood why she doesn’t need to write to him any more. “I’ll miss her” he said.” She was fun.” Thank you Hope for all of your lovely letters and gifts. You have really helped Herbie through the hospital stay and he always looked forward to your letters xx thank you to your mum too.
We still have concerns over the amount of iv Amikacin poor Herbie has to put up with and had planned to discuss this at the clinic appointment. However yesterday our concerns were heightened as he complained of stinging when he had a wee. Obviously the first worry is an infection but he didn’t have a fever and seemed well. Later that evening we noticed a little blood after he had been so I made my first call to the BMT registrar.
When I finally got hold of a doctor I was relieved that it was Mark, a doctor we knew. He said that without seeing him it was hard to know the cause but he didn’t feel it was too worrying and said to get him reviewed by the nurses tomorrow and get a wee sample taken. We were to call the local hospital if he got worse or developed a fever.
I continued to take his temperature but it stayed totally fine and he slept well through the night.
We have really noticed Herbie’s hair growing in the last few days. The photos don’t do it justice. Although I still refer to him as my little Rice Krispie , Lily calls him her baby pineapple!
Most of the time he is totally fine with being bald but every now and then he will mention it. He was happy to know it was growing. I also noted that whilst he was doing bits from his scrapbook for his holiday homework he had to draw himself. “Shall I do myself with or without hair?” he asked “It will be grown won’t it when I go back to school?” I said he could choose to do himself with or without. He said “but is it a lie if I put hair and I haven’t got any?”
I managed to persuade him it wasn’t.
Today we have taken his big sister Lily to the JR in Oxford for her check up. Funnily enough all of the doctors stopped to ask how Herbie was and even Peter and Caroline the phlebotomists wanted to know! It was actually lovely seeing all of our regular doctors, nurses etc again and even better as Lily’s appointment went really well.
When we got home the community nurse, Morag, had tested his wee. Blood (obviously!) and protein present but rest negative. I guess GOSH will sort him tomorrow.
We managed to get him to reach almost the top end of his fluid target which is 2 litres today and this eased the other problem.
Off to GOSH in the morning…I will return tomorrow evening with an update!
BMT fact of the day …
The recipients blood type eventually changes to the donor type. That means if you had a blood type of A+ prior to transplant and your donor had a blood type of O, eventually your blood type would become O. It may take several weeks, possibly months for your original blood type to disappear, but eventually it will. In Herbie’s case this doesn’t matter as he is O- and so is Rufus so he will stay the same.