Dylan’s BMT

I haven’t written anything here for such a long time. I planned to post this on the anniversary of his transplant, back in May, but we’ve been busy so I’m marking his birthday instead.

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.

Dylan couldn’t stop smiling tonight because he’s ‘better’.  He had his monthly visit to GOS for blood tests and to see the doctors.   For the first time he saw Dr Paul Veys, the head honcho, occasional X-Factor star, and father of Aunty Jen’s piano students.  Even though we haven’t got the results of today’s blood counts the doctor decided that Dylan’s restrictions could be lifted.  No more medicine except penicillin, no more rules about what food he can and can’t have and he can go out in public again.

Dylan’s completely over the moon.  He went into a shop straight after his appointment.  A shop!  After checking it was really okay he chose a snack for the ride home.  Eventually he compromised and accepted a large bag of quavers instead of a big family sized bag.  He spent the journey home in the taxi shrieking with delight.

We should have known that today would be the day from how it began.  Every night we fill a big jug with boiled water for Dylan to drink the next day.  At the time, we didn’t realize it was a good omen, but when we went to pour Dylan a drink the handle broke off (though, thinking about it, the handle stayed put and the jug broke off…) and five pints of water landed on the floor.  Well, we don’t need that jug any more.

Tonight we celebrated by going out for dinner.  Think of it!  Out for dinner!  Out!  Dylan had a choice of where to go and chose to go to Cafe Rouge for sausages and chips. He spent the whole meal with a broad smile on his face.  And he had ice cream for desert.

Hopefully next week he will start back at nursery.  He absolutely can’t wait.  He’s been asking about it for weeks and has got all of his uniform together in a nice pile ready to wear next week.  Tomorrow his teacher is coming to visit to prepare him for the transition.  He’s been looking forward to that, too, and has been asking every day for a week whether she’s coming today.

Dylan had a visit from Father Christmas on Sunday.  He was checking out the sizes of chimneys in the local area and popped in to check that Dylan and his brothers were being good boys.

Dylan was awfully shy at first while Emlyn and Gethin went to meet Santa, but he soon warmed up.  It’s a bit of a novelty to have a superhero come to your house when you’ve barely seen a stranger in months.

Dylan’s luck has continued to hold lately.  Both Gethin and Emlyn have been ill in the last couple of weeks and - so far - Dylan seems to have been spared the worst of it.  He had another round of blood tests on Monday and now we’re waiting to get his CD4 count from that.  A month ago it was 165. The month before it was 120 and six weeks earlier than that it was just 48.  He needs to score 300 to be readmitted to society.

While his count is still low he can’t go in shops, to restaurants or to his friends birthday parties.  There are still lots of fun things to be done, though.  As it’s nearly Christmas he’s been enjoying going to the post box down the street to send cards.  He got a Postman Pat dressing up kit for his birthday and the post bag gets employed on every trip.  Gethin got a new scooter for his birthday and the two of them have been scooting around together since then.  They also had a ball in the snow this week as you can see here.

The boys have also been going to a local children’s centre from time to time.  It’s really quiet there during the day so there’s no risk of meeting any ill people and they really enjoy being pampered by the staff.  I think they might have had a hand in organising Sunday’s visitor…

Hurrah, we were home by 4am this morning.  Dylan’s temperature fell as the evening went on and he managed to grab some sleep in the hospital.  Once they had got his blood counts back and established that it all looked fairly benign they gave him some paracetemol which sorted him out properly.

We were sent home with some co-amoxiclav (an antibiotic) in case he has a bacterial infection.  The doctors noted that he has a very sore throat, which could explain the temperature just as the vaccination could.  The great thing about him not having a Hickman line any more is that they don’t assume he’s got an infection in it.  If he still had the line then we’d have at least two days in hospital on IV antibiotics, just in case.  The bad thing about not having a Hickman line is that Dylan had to have his blood taken the hard way (with a needle, not out of a stone, of course) last night.

Anyway he seems to be fine - though ridiculously tired - today.

Once again I’m writing a blog post from hospital.  We all (Dylan, Gethin, Susan and I; Emlyn’s too young yet) had our swine flu and seasonal flu vaccines this morning.  It probably won’t work for Dylan, but it might.  His immune system is probably still a bit immature to be able to learn to recognise the virus from the vaccine.  Indeed, he’ll have to have all of the usual vaccines again (even those he already had before transplant) eventually, but the doctors won’t start that until he’s at least a year post-transplant.

Even if the vaccine doesn’t work for Dylan the idea of giving it to the rest of us is that at least we won’t be bringing the flu home and so the chance of Dylan being exposed to it should be a good deal less.  I can let you know that the swine flu vaccine doesn’t hurt at all when it goes in, but the seasonal flu stings a little.  However twelve hours later and all of us have aching left shoulders - swine flu vaccine aches a lot more than seasonal flu…

Anyway, why are we in hospital?  Well, after he went to bed this evening Dylan got a bit restless and eventually got up again.  He fet a bit warm and sure enough he was running a fever of 39.7°C.  Great Ormond Street thought that was a bit too high for a normal reaction to a vaccine so we’ve come to our ‘local’ hospital, King’s College in Denmark Hill, to be evaluated.  So far they’ve fitted Dylan with a canula (this was always going to happen as soon as we got the Hickman line removed), taken blood and gone away to count it and so on.