Monthly Archives: February 2013

This much we know

Here’s a new voice for the blog…Celia, Henry’s Mum:

After he posted here last night at the end of a long and gruelling day, I was relieved to see JD looking a lot happier and almost unburdened. When you mostly write for your living and then you suddenly stop, you lose something vital. Writing your thoughts down is integral to processing them – to the extent where many of us think in text rather than in voice. So I’m now having a go at blogging in the hope that it’ll help me make some sense of what’s happening to us. Apologies for those who are getting used to JD’s spare writing style. He’s a pro- I’m a self-taught rambler.

We have learned a lot in the last few weeks – much of it stuff we didn’t want to know. No-one wants to be in a serious conversation about blood cancer survival rates for young children. No-one wants to be told their kid won’t be going to school for the rest of the academic year. No-one wants to hear their 6-year-old reassuring his parents he’ll be better by the end of the month so he can go to school when there is no chance of this happening. No-one wants to weedlingly persuade their bald child to wear a hat when he leaves the house very briefly – mostly because it’s cold but also because very secretly it means you can pretend for a few moments that everything is the same as it was and no-one is being treated for cancer. But there’s other stuff too:

1. it’s a cliché – but kids are adaptable, trusting and optimistic. While Davidson and I perspire at every test and have to remember to breathe sometimes, Hen is mostly cheerful and full of energy. This is despite being loaded up with meds we are repeatedly told may make him very poorly. He can find something to divert him or get excited about every five minutes – right now he’s thinking up ways to stop his monkey from peeking at the birthday present he’s wrapped up for him. He can’t go to cafes, restaurants, museums, on public transport, swimming, the cinema, the theatre – any place you’d take a kid in wet London weather. He leaves the house very occasionally, but has found millions of ways to entertain himself. And while he’s been on drugs that affect his quads and give him bone pain, and he has at times been unable to climb two stairs or walk further than the bathroom, he is still telling everyone he can run faster than Usain Bolt.

2. People are bloody lovely: We already knew this. Three years ago Huck, Henry’s brother was born thirteen weeks early. He was in hospital for 101 days, and on some of these he had to fight for his life. During this time our family and friends took care of Hen so we could be there for Huck’s battle. They cooked for us, did our laundry, did our admin, held fundraising events for the prem baby charity, and supported us in tons of ways – especially morally. This time it’s all happening again but to add to the existing support network we have now been fortunate to add Hen’s school friends and their lovely parents. We are so grateful to the old guard who have rolled up their sleeves again for us – especially our siblings and their spouses, in whom we are supremely fortunate – but also the new friends. And our workmates, who have now become friends too. Both of our bosses have been incredibly human and ridiculously generous. Mine has even given Henry a pre-paid account with Climate Cars (they’re carbon-neutral, and fab!) to ferry him to hospital and back. This has been a precious gift. A very old friend, Pam, lives in NY and has developed a three-year running programme to support Henry from across the pond, throughout his treatment.

3. (This one is both a cliché and a run-on from the section above) It takes a village to raise a child: Like many people who move to a neighbourhood in their twenties, we didn’t know anything about Tufnell Park. We went to work, drank in town and came home only to sleep and veg. As the kids have grown we have learned about N7’s nooks and crannies, unexpected quirks, the shopkeepers and even (despite what many of our fellow Northerners think about That London) our neighbours. It’s been one of the joys of parenthood for us. We have two retired teachers who are coming in to work with Henry on fun school-stuff, and offers of many weird and wonderful types of help from so many local people of all generations. The lovely actress from three doors down called in last night with a job-lot of Ruby Violet ice-cream, a favourite of all Tufnellians. A few seconds ago Henry had a big cheery wave from our bin-man. It all helps.

Anyway, as I said, JD’s a pro. He has just popped his head ‘round the door and said this is far too long for a blog-post. So that’s it for now. Thanks for bearing with me x

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A difficult evening

I’m going to add a category of “angry post” to this blog so you can be forewarned not to read them if you’re feeling chirpy. The intention will be to point out that the post is fuelled by irritation that Henry has to go through this crap. This is one such post. It should go without saying that if you do have to “go through this crap”, then this is one country and particularly one city where it’s good to live. So while I’m cross, I also know that our bread is well buttered.

Henry had a hard evening. He always finds Mondays and Tuesdays difficult as he has his “port accessed” which means a large frightening looking needle is thrust into his chest so that cheery nurses can push quantities of strangely labelled fluids into him while his parents grimace and pretend nothing is out of the ordinary. Secondly, he has to take an antibiotic called co-trimoxazole. He struggles with pills so this medicine (administered on Mondays on Tuesdays) comes as a fluid to which the pharmacists add a noxious banana flavour that is nothing like real bananas. Henry, like his mother, is not keen on bananas. He is less keen on sickly sweet, chemically created banana flavouring in a medicine he doesn’t want to take. He is even less keen on it when his latest chemotherapy drug (the cytarabine mentioned in the previous post) has begun to maraud through his system. And he’s certainly not keen when he has the looming possibility that a tube will be pushed down his nose and into his stomach to force him to take the medicine. This is not nice for a six year old. It’s not fair. And it’s not fair when his parents are losing their patience and also becoming physically and emotionally drained. So he does well to take it, slowly but surely. Sadly tonight it was too much.

So while his brother, who’s been through his own fair share of medical intervention, quietly looked on trying (and I think failing) to enjoy an ice cream, Henry first felt gippy, then gagged and then threw up. Sadly he’d just taken most of his daily chemo – mercaptopurine (see previous post). He then spent the next two hours being chivvied and coerced into slowly taking an anti-viral medicine (aciclovir) and the rest of his mercaptopurine and the antibiotic co-trimoxazole only to throw it all up on the way to bed.

So the chemotherapy side effects have joined the party. But what do we do? You can see the catch 22 – he’s thrown up his oral chemotherapy, he’s thrown up his antivirals that protect him from the bugs February likes to throw at all of us and lay us low even when we’re normally healthy, and he’s thrown up his antibiotics that protect him from rather nasty infections that most of us wouldn’t notice but that will put him in hospital. So tomorrow we’ll try again. Slowly. But if you’re six, why should you spend three hours taking foul medicine? It’s a bit crap. As Mutley would say: “Frassin’ Rassin’ Grrrr.” Fetch my coat, I’m going to jump on it.

MRD Risk

The results of Henry’s MRD test came through last Wednesday. We had hoped there would be so little sign of the disease that Henry could stay on his lighter chemotherapy regime. You can always tell when a medical team is planning to deliver bad news. They don’t smile. They avoid stopping to chat. Then they take you off to an office to tell you in private and in a controlled environment. I’m not complaining. It helps to soften the news when you know it’s coming. And I have no idea how I would do it differently.

So Henry is MRD Risk which means they haven’t killed off as many of the leukaemia cells as they’d have liked. The prognosis is still extremely good. What’s not heartening is the level of chemotherapy Henry will have to go through. The spring and summer will now be taken up with a lot of different medicine and tests. He’s immediately been treated with a rather harsh drug cyclophosphamide which took several hours to deliver as they need to give loads of fluid after the medicine, and cytarabine (a cunning medicine that acts like a Trojan Horse in the cancer’s DNA. Not unlike a marauding Greek escaping the wooden horse, it’s pretty destructive… you can read about its use and side effects here. Wikipedia has a description of the science which is a bit more interesting.) He also continues on his daily dose of Mercaptopurine. Hen manages five pills of this which melt on his tongue.

Mercaptopurine

Mercaptopurine

Cytarabine

Cytarabine


As well as this new cocktail, H will have more of the treatment he’s already had. It’s a heavy mix for a small bloke and we’re really disappointed he has to go through it. Having said that his spirits are extremely high and he has managed so far to tolerate the chemotherapy well. He is a very strong lad and impressive in the way he’s taking this on. And although Hen has now lost most of his hair and the rest will go soon, he is most bothered about not being able to go to school. (I’ll post about this separately.)

Henry’s consultant, Nick Goulden, and his colleagues have just published the findings of the previous trial in The Lancet Oncology which you can view here. Hen is taking part in the latest research UKALL 2011.

Consolidation

It’s been a waiting game this week. We are back at Great Ormond Street Hospital this morning for the results of Henry’s ‘Minimal Residual Disease’ test. Unfortunately they are not ready. He has also had another lumbar puncture to give chemotherapy into his spine to keep the leukaemia out of his brain and central nervous system (intrathecal methotrexate).

The headline news last week was that Henry had responded well to treatment. And although there was no sign of leukaemia cells in his bone marrow using ordinary tests, the MRD test would set the course for future treatment.

The MRD is a highly sensitive molecular technique that searches out the remaining leukaemia cells and gives the doctors an idea of how many remain. They can then decide the level of therapy that will be needed to kill off all the remaining leukaemia cells. The test looks for the DNA of Henry’s individual leukaemia cells which were identified in an earlier procedure but as the DNA is different in every case , it can take longer to identify it in some patients. There’s a slim chance the test won’t work in which case Henry will stay on the lighter toxicity treatment regimen he’s currently on… More likely we’ll have a definitive result in a few more days.

A new Mii

Henry announced this week that he needed a new profile on his Wii console. You are able to create a character to take part in the games that has quite a close resemblance to yourself. Henry decided it would be wrong to have his usual one as he will shortly have no hair. It took him a couple of minutes to create a character that would not be out of place in an episode of The Wire – a formidable avatar you would not want to meet down a deserted alley at night.

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Waking up

A quickie: Henry has just had his procedure and all seems well. Hen fought the anaesthetic gas while sitting on my lap. I’m still feeling woozy from all the gas that missed H and came my way instead. While H was under, his consultant came to talk to us. We’ll know next week which regimen he’s on and I’ll post on that later. Suffice to say the rates of cure are extraordinary.

28 Days later

We’re back at Great Ormond Street Hospital in the morning for Henry’s Day 28 Minimal Residual Disease Test. It’s an important milestone. Henry’s been blasted for the past month with steroids (dexamethasone), and chemotherapy (intrathecal methotrexate, vincristine and asparaginase). The aim has been to destroy the leukaemia cells in his bone marrow and stop it spreading to his brain and spine which is so far clear of disease.

Tomorrow’s MRD test looks at how many leukaemia cells are left in Henry’s bone marrow after his month of treatment. It is a really good way of determining how well he’s been responding to the therapy.  It will also determine which treatment regimen he’s on and how much chemotherapy and other treatment he’ll need – especially during the next phase.

While he’s asleep tomorrow, they’ll also take the opportunity to give him another dose of intrathecal methotrexate – a chemotherapy which is given through a lumbar puncture – or less technically as an injection into his spine. 

Henry’s in high spirits.  Although he’s irritated by having to go for more surgery, he’s most annoyed at not being able to have anything to eat or drink in the morning. I wish our concerns were so straightforward.

 

Clippings

Henry and I went for a haircut a couple of days ago. We’ve been worrying about his hair coming out for a few days. He has wonderfully thick blonde hair which lives by its own rules and is certainly not concerned with gravity and has never really let a comb bring order to it – despite our increasingly halfhearted attempts.

We were late for the appointment as Henry’s blood transfusion took a little longer than expected. It turned out the small bung at the end of Henry’s wigglies was leaking. Each time the nurse pulled back on the syringe she could only pull back air which made me worried that his port had been open to the air and therefore possible infection for several days. Of course, it had not… it was simply that the bung at the end of the wiggly was leaking and needed replacing. It took a while to sort this out and begin the transfusion which took up the next four hours.

So when we eventually arrived at the hairdressers it was after dark. What amazes me daily about this is Henry’s extraordinary attitude. It goes beyond forbearance. Now he is taking a break from the steroids that distort and magnify his mood, he is almost always in high spirits. He has taken the news of his forthcoming moult without showing any concern at all. So while I was explaining to the sympathetic hairdressers that his therapy would mean his hair would come out and needed drastic shortening, he was hooting at the wigs arranged on mannequins in the corner of the salon. He would have had them all on if I hadn’t stopped him taking full advantage of the staff.

Now a few days later, his hair is really beginning to thin.