Author: James Walker

This is a post that we never thought we would be writing, and it breaks our hearts to have to write it. On Saturday August 10th, less than a week after his twelfth birthday, we lost our beautiful boy, Ben.

In the last post we wrote that Great Ormond Street Hospital had agreed to take Ben on a phase 1 radio-immunotherapy trial. We visited GOSH on Wednesday 7th to find out more and discuss the trial with them. However on our return to Southampton, we learned that it was clear from his rapidly increasing white blood cell counts amongst other symptoms, that the disease was refractory (resistant to treatment), and in fact the counts were now so high as to rule out any curative treatment options. In the two days that followed we discussed palliative options with the team and a plan to bring Ben home, which we finally managed late on the Friday evening. After a rough night his condition deteriorated steadily through Saturday until he finally passed in the afternoon.

It is really difficult to find words that express how we feel even ten days later; our beautiful, clever, funny boy means the world to us and a world without him in it seems simply inconceivable. We are consoled that we managed to bring him home before his passing, and that his deterioration was rapid (and so hopefully any suffering was short). That on the same day we talked to the consultants about a possible cure, we later learned that it would be impossible, seems very bitter-sweet. We have been shocked by the ferocity of his relapse, both on its initial diagnosis back in July, and following the chemotherapy over the last week, particularly as he seemed to be doing so well in the first six months following transplant.

Throughout the last 14 months Ben has amazed us with what he has coped with, he has had to do a lot of growing up. Certainly for us, although daunting, there was never any hesitation to keep going, because the prize was to see him continue to mature into a young man and fulfilling his potential. That we won’t get to experience that breaks our hearts.

We will always be grateful to Ben’s stem cell donor who gave us the gift of more time with him, and of course to the doctors and nurses who cared for and supported us through difficult times. We can only hope that one day a robust cure for AML will be developed so that in future patients and families won’t have to go through what we have been though.

While this chapter of the story seems to have come to a close, his epic journey will continue through the work we are inspired to do in his name to ensure that others can benefit from the kindness, generosity of spirit and pure determination of a boy who longed to help others.

Love you Benny Beeps, to infinity and beyond xxx

We’ve had a difficult time over recent weeks as we have come to grips with the fact that Ben’s AML has relapsed. Through late May and into June, we had a run of visits into our local hospital with Ben to deal with various apparently minor infections; some in his line / line site, others giving various swellings behind his ear and neck. In early July after some further investigations we ended up being given the heartbreaking news that they suspected Ben’s AML had relapsed.  Although we always new that this was a possibility, Ben had really seemed to be doing very well and so it didn’t seem possible that the run of infections he had had were ultimately down to a relapse – certainly the word we didn’t want, or at that point really expect to hear.

Following the news we had some difficult conversations; essentially Ben had already had his ‘best shot’ with the transplant he had received and second transplants are difficult when the relapse is so soon, as in his case. There may not be many (if any) treatment options for relapse.

Since then the path we have followed has been very similar to last year after initial diagnosis; back to Piam Brown ward at University Hospital Southampton for a bone marrow aspiration which confirmed the diagnosis. On confirmation, the team let us know that were a couple of options for treatment that they would explore (both essentially second transplants); a trial at Great Ormond Street that uses a different conditioning protocol, or under some circumstances, Bristol might be prepared to undertake a second transplant.

However both of these options would depend on test outcomes, and would take some time to further explore. In the mean time Ben was allowed to do a few fun things (in between IV meds), so we caught up on a few movies in quiet local cinema screenings (Spiderman: Far From Home, Men In Black International and Toy Story 4) and Ben had a few buddies over to do some gaming and have some pizza.

In the days that followed, it became clear that the GOS trial was looking promising and the team at PB decoded to start a five-day chemotherapy treatment to start managing the disease, to reduce it to a level that would be suitable for the GOS trial. Shortly after this we heard confirmation from GOS that they would be prepared to treat Ben on the trial. It has been huge relief to know that there is treatment available for Ben and whilst here are some hurdles to overcome to get there, there is at least a way forward.

Ben is now in recovery from the chemotherapy, it been a bit rough on him; lots of temperature spikes and it has smashed his appetite somewhat. We are waiting patiently for recovery and are hopeful that the usual bone marrow aspiration at the end of recovery will indicate he is in good shape to go ahead with the trial at GOS.

We remain hugely grateful to our family and friends, to all of the staff at QA and PB who have looked after us and supported us so well over the last few weeks.

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.

We’ve been a little quiet since Ben’s transplant, so here is an update. We are now at day 22, and over the last week or so Ben has been dealing with some post-transplant complications. Last weekend we learned that Ben had tested positive for both CMV and c.diff infections. Following this Ben has developed a very inflamed gut, which could be caused by the infections or one of the many drugs he is currently receiving. As a result, he is currently ‘nil by mouth’ (all nutrition is IV), and has had a lot of sickness. The good news is that in the background there are signs of engraftment, although at a gentle rate. It will likely take Ben some time to recover from this, and realistically it will take him longer to reach full engraftment and be in a state where he comes out of isolation and is discharged to the day ward.

As you might imagine, undergoing a transplant is not an easy journey (for any of us), and complications are not unexpected. Ben is showing great resilience under tough circumstances. He is in the hands of an incredible team who are very focused on his improvement to full recovery. We are all taking it one day at a time. Love to all and a big thank you to everyone for your continued support.

Ben’s cousin Jacob recently decided to set himself a challenge to raise some money for the charity DKMS. He entered himself into a local swim for charity on Saturday 13th October 2018, and set out to try and swim

• 100 lengths (2,500m in total)
• in 55 minutes
• and raise £400

with 25% going to the local Lions Club who organised the swim, and the remainder going to DKMS.

In fact it didn’t take him too long to hit his initial target with many generous sponsors coming forwards, at which point he revealed “To be honest, my secret target is £1,000!”. His mum replied “Wow, that is a lot more money than the £400 we set as our target!” to which he responded “Come on mum, now is the time to go big or go home!”

We were amazed when Jacob smashed his target, and when he reached 100 lengths he kept going! 108 lengths (2,700m) in 55 minutes!

At the time of writing, Jacob has raised over £1500, with 75% going to DKMS. We are all in awe of his effort and determination, and to all of the generous sponsors who helped him “go big”!

More details: https://www.justgiving.com/crowdfunding/jacobsbigswimforben