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’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 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…

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.

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.

I’m particularly glad to see the back of the line.  Every night when Dylan has his bath he had to have the ends of the line put inside a rubber glove, which had to be taped up to keep it dry.  Although the line is a fantastically convenient way of getting access to the blood, it’s also a gaping wide infection risk.  Just as nurses can get blood out really easily, bugs can get in too.

He had the line put in back on D-13, when he was first admitted.  It was in service 24 hours a day for a while when he was having ciclophosphamide and mesna.  Since we came home it’s been used once a week to take blood samples which go off for analysis to see his counts recovering and test whether there are any viruses circulating in his system.  Those blood tests will now be a bit less frequent but they’ll involve needles now rather than simply hooking up to the line.

Looking back, I see I never really explained what the Hickman line was.  This diagram - taken from a leaflet produced by Christie hospital in Manchester - here shows it, roughly…

The bit we could always see was “the wigglies” - a silicone tube that came out of Dylan’s chest wall, under his arm, which divided into two tubes after a few inches.  At the end of each tube was a special connector you could connect a syringe to, but which was supposed to keep air and bugs out.

Inside the body it went under the skin up to Dylan’s neck, where it entered his jugular vein and then headed back down towards his heart.  The open ends of the tubes lay in the superior vena cava, just outside the right ventricle of his heart.  I think the idea of putting it there is that the blood is very fast flowing there so clots are very unlikely to form on the line.  It probably also helps to distribute drugs around the body very quickly, too.

We’ve had to carry a “hickman line emergency pack” with us wherever Dylan goes for the last few months  It’s got a few sterile wipes in it, some dressings and some clamps.  The idea is that if the line gets cut, or comes loose or anything like that then we could do something about it.  I’ll be glad not to have to worry about where we’ve left it.

The procedure for removing the line is comically simple - you just pull on the end quite hard and it slides back out.  Then you massage the side of the neck to close up the hole that’s left where the line went into the vein.  Dylan had all this done under a general anaesthetic but for adults it’s often done with just a local.

Now the line is gone he’s also been able to drop another of his drugs - ciprofloxacin - which he was taking to help him deal with any bugs that might have got in through his line.  We’re down to just four now - penicillin, aciclovir, co-trimoxazole and calcium folinate.  The regime will now stay the same until he can be admitted back into regular society.  I’ll write more about that in the next few days.

Dylan wasn’t at all pleased to be back at GOS, although he was more relaxed than on previous clinic visits (when he flatly refused to get out of his pushchair).  He was allocated a bed in a room with three others as he was having an anaesthetic.  Unfortunately he now associates all hospital beds with losing his liberty so he simply wouldn’t go in the room and patiently stood outside it whenever we had to go in to ferret something out of his bag, which we’d left on the bed.  We did eventually get him to go in there when we brought him back from theatre, but only because he was still groggy.

Since then he’s been quite fine.  When he sees his friends he lifts his shirt up to show them he hasn’t got any wigglies and seems to be very pleased they’ve gone.  He knows it’s all a part of getting better.

The extra year on his age has brought a new maturity.  Although he’s had a full-size single bed in his room for months - as well has his old toddler bed - it lay untouched until Friday when he decided that it was now time to graduate to it.  We’d almost given up trying to convince him to sleep in it.  Obviously he knew all along that it was a four year-old type of bed.

He continues to be healthy.  He’s dropped his ciclosporin, metoclopramide and itraconazole and remains well.  His big goal now is to get a CD4 count (they’re a kind of lymphocyte) of 300 or more.  Once he’s cleared that most of his restrictions will be lifted and he’ll be able to go back to school and go into shops and so on.  How we are all waiting for that.  Great Ormond Street only measure the CD4 count on his clinic visits.  It doesn’t change very quickly so it’s not worth the community nurses while to take samples for that.  On August 12^th (D+77) he had a CD4 count of just 13.  By September 16^th (D+112) it had risen but only to 48 so there’s still a long way to go.

Our next clinic appointment will be on October 28th.  If things continue to go well between now and then then in the afternoon that day he’ll probably be having his Hickman line removed.  We will be very pleased to see the back of that.  Although it’s invaluable for allowing the nurses to take blood samples each week (and originally it saw 24/7 service for administering the chemotherapy drugs and delivering the new marrow) it now seems to be just an infection risk.  We have to be very careful to keep it clean, and bathtime involves placing the ends of the line in a rubber glove and taping it tightly shut to stop it from getting wet.  He showed me his line this evening and told me it was for doctors and nurses.  I told him that maybe soon it would be going.  He looked pleased and told me he was going to go swimming then.

After he got discharged from King’s he was only home for half an hour before it was time to go to his usual clinic appointment at Great Ormond Street.  It’s been five weeks since the previous one and since then his ciclosporin dose has come down to 2mg twice a day.  He’ll be off it completely next Thursday.

He’s also going to come off his anti-fungal, itraconazole, now and in a week’s time he can stop the anti-sickness drug, metoclopramide.  They’ll now be testing his immune reconstitution in order to determine when he’s hardy enough to go back into the outside world.

Dylan’s hair is growing back properly now - it’s a good quarter of an inch long all over now.  Even so, it’s still hard to tell what colour it is.  From some angles, in some lights it looks quite dark.  Other times it still looks blond.  I think the top is darker than the back.  Perhaps it will grow back tabby.

Since he wasn last sick at 10pm he’s been fine, took his night feed and kept it down, slept (eventually) and had his breakfast.  He’s just gone back to sleep which is how I’ve got chance to write this.  Hopefully we will be discharged this morning as there doesn’t seem to be any obvious reason to hang on to him any longer.

The dose of cyclosporin is always very much tailored to the patient.  The idea is to get about a concentration of about 150 ng/ml in the blood.  If it’s too high, you reduce the dose, and if it’s too low you increase it.  Dylan started out at 50mg twice a day but was already down to just 10mg twice a day and this morning we cut it to 8mg.  We’ll be cutting it by another 2mg every Thursday morning now.  However, as we go we’ll be keeping an eagle eye out for rashes, green poo, vomiting, diahorrea - all the signs of GvHD.

The other thing that’s weird about cyclosporin is the form it comes in.  It’s mixed with oil in a concentration of 100mg/ml.  That means his dose is currently just eight hundreds of a millilitre.  We have special syringes for it.  Even so, 0.02ml is going to be a tricky dose to give exactly.

Hopefully once he’s off cyclosporin his immune system will work much more effectively and the other  medication can also be reduced.  Just about everything else he’s taking is prophylactic and there to fight bugs that he can’t fight for himself.  Here’s a photo of Tuesday’s 10pm selection.

Anyway, this is another milestone we’ve reached so we can take heart from that.