It’s been a little while since we’ve updated on Ben’s Epic Journey, so here’s what’s been going on!
Firstly we have had the most fantastic news that Ben has a couple of potential stem cell donors – one in the UK and one in the US. This is of course a huge relief as it unblocks the pathway to a stem cell transplant at Bristol Royal Hospital for Children, and Ben’s long term recovery. They are still working through which would be the preferred donor, but we understand that should be finalised soon.
Whilst Ben has been recovering from the second round of chemotherapy, we have had a couple of things to take care of prior to transplant. Firstly we have had some ups and downs (literally) with feeding (NG) tubes. Not long after being moved back to QA Ben brought his tube up, and despite several attempts we weren’t able to get another one passed. He had been without one for a couple of weeks, which made for stressful times as we were having to encourage / nag him to hit his fluid and calorie counts on a daily basis, without the backstop of an overnight feed. However, it was made clear that for transplant Ben needed to have an NG in place, or a gastrostomy. In the end, Ben passed his own tube with the support of a very patient and supportive nurse (whom we are eternally grateful to!).
A more serious issue has been that Ben has had an infection in his central line which has been managed with antibiotics. However, the line needed to be changed since they can’t take the risk that a trace of the infection is lurking and might flare up whilst his immune system is compromised during the transplant. The line replacement was done yesterday at Southampton Hospital. Ben never finds these thing easy (who of us does?), but we (in particular Mum!) got him through it. In the same procedure he also had a bone marrow aspiration, and all being well, the results from this should allow us to proceed to the stem cell transplant in Bristol. We have just heard from Bristol today and been invited down next week for investigations prior to transplant.
In the mean time, we continue to be well looked after by the wonderful team at QA Starfish ward and we will certainly be sad to say goodbye to them when it is time to head to Bristol, although we are pleased (if not a little daunted) to be moving on to the next phase of treatment. Thank you wonderful team, you are amazing – not least, because you have, so far, managed to entertain a vast amount of Lego and get both Ginny and myself fully trained with the tube feeding and meds for our boy, which is no mean feat!
