Dylan’s been doing very well since his restrictions were lifted in January. He’s back at school and enjoying life to the full. He’s achieved loads since then and his speech has come on really well too. Away from school he’s been very busy too, catching up with all his friends, learning to ride his bike, having swimming lessons, and enjoying the summer.
It’s hard to believe that it’s been more than a year since Dylan left hospital after his transplant. It’s been quite a year!
By the standards of some of the other inmates we had a very lukcy ride. Even so, it wasn’t easy, by any means. Most of the time we were scared about something. I remember worrying about plane crashes on the day that Dylan’s cells flew from America to England. At the time I knew I was being silly, but then this spring some patients had their transplants delayed by the volcanic ash cloud. And while Dylan was inside, the whole swine flu thing was going on outside. That didn’t bear thinking about.
Those weeks were hard. We were lucky to have the help of family and friends. And, of course, everybody who posted cheery messages on the blog!
As the summer wore on it became clear that Dylan had dodged the worst of mucositis and he didn’t go on to develop any GvHD which still feels like a miracle. We got out 47 days after we went in and found a whole new set of challenges. He was quarantined at home with only a few visitors for months longer. Each month his blood counts improved but achingly slowly until he got his freedom back in January when I last wrote. Only then did we realize how effective his quarantine had been…
A week after going back to school he was stuck at home for a week with a bug. Then he got back to school for a week before having to have another week off. That pattern continued for a few weeks while he caught up on some bugs his new immune system hadn’t seen before. Then he got chicken pox again (almost twelve months to the day since he had it pre-transplant) and that made him properly ill. I’ve never seen Dylan just want to lie on the sofa for days on end, but that was it for him. He went back on aciclovir and it all cleared up nicely. Since then he’s been pretty strong. Fortunately he’s never had a bad reaction to any of his drugs.
Great Ormond Street hospital tested his mannosidase level back in January — this is the enzyme that his body can’t produce for itself, but which hopefully his new blood will contain and supply to the rest of him. The level was 350 which is very good — the normal range for you and me is between 61 and 520. Hopefully some of this is also reaching his brain.
We can’t tell how he would have developed without the transplant but with it he is doing nicely. He didn’t really have any speech this time last year but now he’s starting to talk in short sentences. He mastered the toilet, knows all his colours and loves to count. His balance is much better and he is getting stronger. He’s been learning to swim and going to a performance class and a dance class. At home he’s being big brother to Gethin and Emlyn. He’s ever so proud of how Emlyn has learned to walk and is growing up and Gethin’s own efforts on the potty.
We were really lucky to find a bone marrow match for Dylan. There are about 12 million people on bone marrow registers around the world but only one matched Dylan perfectly. His kindness has made such a difference for Dylan and given him the chance of a normal life.