Diagnosis – One Year On

Well, it’s been a little while since we posted on here, which I would say is a good thing; we have mostly been getting on with life, and getting back towards relative normality. The last few days have been ‘interesting’ for us all as we have approached the one year anniversary of taking Ben in for a ‘drop-in’ blood test (which really marked the start of his epic journey), and a year ago today, which was when we were told that his diagnosis was Acute Myeloid Leukaemia.

So how is he doing? It’s pretty much six months since he got home, and eight months since his transplant. Big picture – he is doing very well, it very much feels like we have ‘our Ben’ back; funny, chatty, and very enthusiastic about all things Marvel, Lego, and Nintendo Switch! He has a healthy head of hair back, he has more energy, although he still gets a bit tired, but he is gradually getting more active with a little bit of cycling happening last week. He’s a lot less nocturnal than he was but it can still be a bit of a battle to get him to take his meds quickly, and to get him to eat and drink as much as he should. Hospital check-ups should be relatively infrequent now; down to every two months. We had hoped that by now his counts would have recovered enough that most of the meds would be dropped, and his central line removed, however the last few T-cells are being stubborn, so we are all having to be patient. He has had a few minor infections over the last couple of months, so there has been a fair bit of back & forth down the A3 to QA for antibiotics, and whilst it is nice to see everybody there, it’s a little odd to be back. One of the lovely things is for the people that have cared for Ben to see him more as he really is, and firing on most (if not all) cylinders!

We’ve had some high points; Ben was granted his ‘Make-A-Wish’, and got to see Marvel Avengers Endgame on the weekend it was released, at his own private screening at Industrial Light & Magic’s offices preceded by a personal video message from Chris Hemsworth (which left him … and his Mum … and his Auntie … genuinely speechless!) He’s also been on BBC South News and on Channel 5 News with his Mum, Ginny to raise awareness of Stem Cell donation for DKMS. We’ve also been busy supporting friends and family raising funds for charities that have supported us; plant sales, Drum-a-thons, the London Marathon, sponsored swims, amongst several activities that have raised funds for Clic Sargent, DKMS and the Rhys Daniels trust.

Overall Ben continues to do amazingly well, and in stark contrast to how he was doing when diagnosed a year ago. We continue to be grateful beyond words for the generosity of his anonymous stem cell donor, and to all of the dedicated Nurses and Doctors, Consultants, Play Therapists, ward staff and to all our family and friends who have supported us, and continue to support us on Ben’s journey.