The Word You Don’t Want to Hear…

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.