Infinity and Beyond

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