Tag: donor

Donor News and Progress towards Stem Cell Transplant

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!

A New ‘Normal’

The last few weeks have been a whirlwind of epic proportions and at the beginning of this week, we received the news that although Ben’s first chemo has gone well, with few side effects, the chemo alone is not something that will give Benny the best outcome.  So, close family are being tested next week, to see if we are a match.  If not, a donor will be found through the world wide register.

If you are reading this and you are healthy and interested in Ben’s journey, please consider looking at www.anthonynolan.org to find out more about becoming a bone marrow donor.  You could really make a difference to a family like us.

So, the one thing that you notice in this ward when you first arrive is that you are the people looking like rabbits in headlights and you’ve suddenly fallen into a family you never knew you had.  We spent a little time getting settled and it wasn’t long before parents were introducing themselves and openly explaining their own journey.  Within days, the fear and concern has turned to admiration and determination and a new ‘normal’ begins.

The courage in here is like nothing I’ve ever experienced before and the children are the most resilient I have ever had the pleasure of meeting.  Every single one is on their own special journey, supported by the most incredible families.  Life has slowed right down.  You realise you count every blessing; your time becomes guided by the good moments, you focus on a good hour, a good morning, a good afternoon and an uneventful night.

The staff in this ward are incredible and are so supportive and nothing is too much for anyone to help with.  We have been introduced to the CLIC Team and met charity workers, funny comedy doctors, PAT dogs and young adults who’ve come through this and are living their lives to the full.

Ben is still Ben; strong minded and governed by movies and Minecraft, researching Lego builds, focused and funny, in spite of everything that’s happening and the girls are still the girls, coping with so much around them, yet still finding fun in every day and showing remarkable maturity and courage, too.

Outside of the medication, options to heal alternatively are limited, as the medication works in a particular way, but we stay open to everything.  I do alternative healing and have a team of friends who are sending healing energy to Ben and I have a dear friend of mine, who is a reflexologist and has given me ways to massage Ben’s feet to help re-boot his immune system, as it is currently on the floor.  This is something Ben is enjoying every few days and I try to do this in the evening, so he drifts peacefully off to sleep, totally relaxed.

I have also spoken to other parents in the ward, who are using LifeMel Honey, which has been discussed in the media as having a very beneficial effect on those with cancer, helping them to balance their systems between the chemotherapy cycles.  Bees have always been amazing and honey helps with so many things.

The thing is, this journey has never been on our radar and it’s the famous saying that you never think it’s going to happen to you, but all of a sudden, it does happen.  Cancer of any kind does not discriminate and if you can, please consider becoming a donor.  We are being tested next week, but there’s every chance you could also help; whether it’s us or someone else.

Thank you.