T+365. Signing Off.
When we started this process by Saffy being recommended for a transplant and then starting the search for a donor about 18 months ago, we had little idea what we were letting ourselves in for. We had only an outline idea of what we were letting our little girl in for.
We were convinced that a BMT was our only hope of giving Saff a fighting chance of something like a 'normal' life. The odds were good - around 90% of BMT kids survive the procedure and many of the 10% are those poor kids whose conditions (including cancers and auto-immune diseases) had weakened them already.
Over the weekshowever, it's fair to say that the 10% started to haunt us. Living with the prospect that the worst might actually happen had several effects on us. We prepared like mad - emotionally, practically - we thought about what Saffy would need, what her brother Reuben would need. Who could help with what, who would need what. In all of these preparations our ISMRD friends were immensely helpful and knowledgeable. We made arrangements about work and childcare and my mother agreed to be our 3rd carer. We noticed somewhere along the way that we had stopped being interested in some of the things we used to do that somehow just didn't seem very interesting any more. We probably drank too much.
And then we were in GOSH and life had its own momentum and intensity. We worked at everything we could, learning as much as we could from everyone - medical and other staff at the hospital, other parents, other kids. I won't forget some of the most profound lessons. In a sense, this was the easiest part - it was intense, there was always something that needed doing. We work in deadline-driven jobs so this part played to our strengths. It was all about Saffy (and Reuben) and we did not have too much time to sit and think. Doing the blog every night was therapeutic too.
But, above all, we were very, very lucky. We were well-prepared and expecting infections, rejection, extreme reactions to medication. In the event, none of these turned out to be as bad as we had feared and Saffy was an absolute delight. Her anxieties were there. We saw them for example in her developing a fear of clowns (called coulrophobia, if you're interested) whilst in hospital - but she found the good in every day and every situation.
And now, here we are. BMT officially over. It has been the single defining episode of our lives so far. For Saffy, of course, it is her chance to develop. Her alpha -mannosidase level is 77 on a scale that runs to 520, which puts her at the low end of carrier level. This could go up, but to be honest, our doctors have no idea. What it means to her development will unfold in the years to come. Her doctors, teachers, psychologists, occupational therapist, speech therapists, ophthalmologist, spinal consultant, audiologist, dentist and the rest of the team will monitor and help her.
As for the rest of us, Reuben carries on pretty much as before. We consider this a victory. I am not the same, largely through learning something about myself and my priorities in life. I won't bore you with all of that. Sonja having given up her job to care for our kids through Saffy's BMT is applying to become a teacher. The plan is that this gives her more time to spend with the kids and, although she has not said so, I suspect the opportunity to help and nurture children in some way has more of a magnetic pull now than maybe it would have done before. Getting onto a course will be a new challenge, so fingers crossed.
Before we sign off and complete this blog, which we really hope will be of some help to people starting on the same road in the future, we want to thank all our friends and family - both those we knew before and those we have discovered during the last year and a half. Because things have turned out well, what has happened is that many of our relationships have been strengthened and we have found others who have entered the Woolley Family Hall Of Fame. This isn't Oscar night and I am no Gwyneth Paltrow, so we'll leave it there, but because of the people around us, we believe we are luckier than most.
All our love,
Martin, Sonja, Reuben and Saffron Woolley.