Dylan’s BMT

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.

We all went back to Great Ormond Street on Wednesday for Dylan to have his Hickman line removed.  It’s great that it’s gone - it feels like another milestone along the journey that we’ve successfully passed.

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.