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!
Brilliant news. Positive vibes. Keep us in the loop. Love to all. xx
What fantastic news for you all! We are so please for you. We hope Ben got Nicholas’ letter, we did drop it into Southampton a couple of weeks ago. Love to all. X
So many good, encouraging aspects in this blog. I’m so in awe of you guys. The strength all of you are showings amazing. I know I’ve said it before but I’ll say it again:If there’s anything I can do please just ask and if it’s possible for me to do I’ll happily help out. Easy to say but meant sincerely – Love & hugs as always
XX
It’s such great news, and to have two good matches is fantastic. Ben will go from strength to strength knowing there is a stem cell donor, his life is about to turn around and head on the road to recovery! Well done all of you, your love and strength as a family has never been stronger and it will get you all home soon. My love to you all ?
So pleased to hear there’s potential for two donors! I know it’s just the next step of the journey but so very glad to see you’re getting towards it ! Hope you keep your spirits high x x
Sandie
You are all totally amazing, of course especially Ben! Often thinking of you, sending you much love from all the Bensons ❤️❤️❤️❤️❤️❤️
Amazing news! I’m crying with relief for you. So happy you’ve found your match, Ben. You’re all being so brave and positive, and this update is the best yet. Sending you (virtual) hugs and positive thoughts. Lots of love, Genna x
Wonderful news. Just take each day as it comes and you know we are ‘in the slips’ should you need help or backup. Well done team!! Xx
I am part of Sues angelic reiki group and aware of the journey Ben and you are on and have been following your progress……so I am so pleased with news shared by Sue today . I volunteer at the Living Well Centre at Rowans and am deeply aware of the bravery and fortitude shown by patients, family and friends when faced with challenges that have such an impact on all concerned . I will continue to send healing and loving thoughts your way as always with light and love and angel blessings CarolPiercy.
Looking forward to hearing about Ben having his bone marrow transplant and feeling like a new lease of life and well again soon.
Hope the PEG works well, so he can have the transplant soon.
Bless you all, xxxxx
So great to have this update! Thinking of you all & looking forward to the end being in sight 🙂
This is so wonderful to hear Ginny and James. Jesse asks often about Ben and we’re all praying for him. He does ask to visit him but I expect that needs to wait until he’s further along his recovery road? Please let Ben know that Jesse really misses seeing him and he is very much loved and thought about. Xxxxxxx love Hannah
This is such great news. I have been a donor and I am glad one has been found for Ben. I wish you good luck with the transplant and recovery and hope it is the long term cure you all deserve. Good luck. ??