We spent three days this week down at Bristol Royal Hospital for Children, for Ben’s BMT ‘work up’. This consists of a series of meetings with the team, and in particular his Stem Cell Transplant Clinical Nurse Specialist and his Consultant. This is a chance for us to all get to know one another, and for us to get up to speed with the transplant process and how it works in practise. There was a lot of information to take on board over the 3 days; although the chemotherapy parts of the process are now kind of familiar, the actual transplant process and its side effects are of course new. When you stop and take stock of it all it is mind-blowing that it can be done. Once completed, Ben will have two people’s DNA in his body (his blood will have his donors’ DNA, whilst the rest of his body will have his), and his blood group will change as well!
We got to go up to visit the transplant ward, which is an amazing place. Ben was little overwhelmed which is perhaps to be expected. During the three days, Ben also had a series of medical checks and tests to make sure he is in good shape for transplant and evidently these went well.
One of the nice things is that the hospital has a strong affiliation with Wallace and Grommit (one of Ben’s favourites), so it was fun to hear Wallace’s voice in the lifts, and see a ‘Grommit Unleashed’ character on the ward itself!
We were happy to stay up the hill from the Hospital at CLIC Sargents ‘Sam’s House’ where we were very comfortable and welcomed by several of the BMT families staying there.
At this point we are really just waiting to hear the confirmed date for transplant and admission. Although it is a bit daunting for all of us, we were glad to be able to visit the hospital, meet the team and get our bearings – a big step on Ben’s journey.
Nutrition has also been a concern; having brought up his NG tube on his first night back(!) and after a couple of fairly stressful attempts to pass a new one, we have been trying to encourage Ben to eat and drink without falling back to the NG. He’s been doing OK with this, but it’s taken some encouragement, and a bit of lateral thinking as we’re not able to cook for him on the ward. He’s a fussy eater at the best of times and with taste buds altered by the chemotherapy, there is little on the hospital menu that appeals, which can make it a bit of challenge to hit his calorie target every day.
