Tag: BMT

Discharged!

Ben has continued to make steady progress, and since being allowed off of the ward for a few hours, has been able to repeat this several times over a week or so. This has been a very positive step, since he does not like hospital food(!), but has been eating when visiting the house and we can cook him something. Just over a week ago, the doctors told us that he was doing well enough that he could be discharged from the BMT ward, go back to the house, and come into the day ward as an outpatient. Initially this is three days a week, with the frequency decreasing as he continues to progress.

Although we were elated at the news, it is bit overwhelming, since it puts the responsibility for his eating, drinking and medication squarely on our shoulders again. And, disappointingly, it proved a bit optimistic since the next day we found ourselves being re-admitted to the BMT award as Ben was refusing meds and fluids due to feeling sick. Ultimately I think that was down to all of us not being quite ready; we hadn’t managed to get the meds regime up and running at the house before hitting problems. So feeling a bit deflated, we were re-admitted back on the BMT ward for the weekend.

Ben is delighted the pandas have arrived in Minecraft

Thankfully the routine was quickly re-established, and we were encouraged to be hands on the with his meds, which certainly helped with confidence, and within a few days we were being discharged for the second time. Happily, this time around things have gone much more smoothly. Ben is eating really well, and the meds routine is well established. It is a bit of a challenge getting him to hit his daily fluid target, but we are able to run a fluid infusion overnight to make up any shortfalls. In himself Ben is brighter, and slowly getting more physically active, and this last weekend we have had  the whole family under one roof which has been fantastic! Hopefully it won’t be too long before Ben’s care is handed back to Southampton we can all come home.

Getting all Worked Up

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.