No News is Definitely Good News

Thanks so much to everyone for all your support. I‘m sorry we don’t write on here very often any more. Thankfully life has returned to a new kind of normality. And we’re busy rushing around after 3 children, 1.4 jobs and a cat. Our extension is planned to start in March, which will bring about even more chaos. But if you don’t hear from us, that is definitely good news.

A quick update – Joe is good, he attends school all the time, apart from odd weeks in hospital – we seem to have caught a lot of bugs this year. He goes to after school tennis and swimming – he did football too, but it got too dark. Sam and Joe are about to start karate on a Sunday, so we’ll see how that goes. After Easter, he wants to join cricket club. So after a year of no after school activities and just being grateful he made a day at school, he is back in the swing of it.

Treatment wise, he has vincristine once a month, followed by 5 days of steroids. This all makes him tired, irritable and grouchy. But once we’ve done that week, he soon picks up and is back to normal, irritating sam and us. (not lily, he adores her and she him.)

Since a cold and wet summer Joe and Sam have been pageboys and we managed to go to Lapland, with When you wish Upon a Star. That was fabulous, a once in a lifetime trip.

Currently we’re waiting eagerly for snow. And then hopefully an easy and stressfree build – and a hot and lovely summer!!! (we can all dream.) Fingers crossed nothing goes too wrong.

Fear (by Sue)

I have this constant fear, what happens if he relapses. I don’t think I could do it. Watch my child die or go through hell. I suppose if it happens somehow I’ll get through it for him. I keep asking the nurses about the statistics of it all. I understand statistics. I know what high risk of relapse means. But I haven’t got any numbers for the percentage chance he has got for this relapse. I’m told the most likely time for relapse is the 2 years after treatment has finished. I know if he relapses it’s really, really, really, really bad. The thing is I desperately ask Rosie (the oncology nurse, not my 15 year old niece) all these questions, but I already know what I want to be told. I want to be told it’s going to be alright. That it doesn’t get any worse. That we just have to get through these 3 years of treatment and he’ll be ok. Then I get a small piece of information and mull it over. I constantly worry that we made the wrong decision about not going into the trial. But I don’t know the statistics. And what if the worse thing happens and it’s all my fault. And in my head it’s the worse possible scenario and I don’t think I can do it.

Love Sue

A very rare update from sue. But as usual Jez has so much work on there is only just enough time for the kids and me (and of course footie and the guitar)
It’s been a hellish couple of weeks: we started intensification. We’re now in the middle of it and have been given a week off as Joe’s bloods haven’t improved enough for the next bit.

I knew the first 3 weeks were hell and the drugs knocked the stuffing out of joe. But I started out upbeat – IF and IF we are lucky, this is the last one we will have to do. So I kept counting, the first doxorubicin only 2 more left. The Joe got poorly, really poorly. We ended up in hospital for 5 days and then they gave him the last doxorubicin. He had a line infection and a chest infection. He came home on steroids, stopped playing, stopped talking, stopped moving. Sat on the sofa and moaned about how ill he felt. My heart broke. I heard Sammy playing with Molly and George from nextdoor in the garden and thought Joe should be out there too. I thought why us? I thought it’s not fair. I thought I can’t do this anymore. Jez said he didn’t remember it being this bad last time. It was, but we’d forgotten and Jez had been at work last time. It wasn’t so obvious, as everyone else was at school. So there was no comparison of what a healthy child should be doing.

Slowly Joe started to improve, we had a lovely Sunday at Eaton park with Theresa and Simon. Joe played cricket, a bit. He played a funny football game and talked to the other children. I even saw him smile. Life wasn’t so bad.
Monday, and I dragged him to school, desperate in my heart that he was well enough for it. He came home a t 10.30. Tuesday and we did the same. He came home at 12, after being cajoled through the last hour. I wondered is he ever going to get better from this. Today, he did the whole day, played outside every playtime, took part in PE. Kids are amazing.

I’m back to counting again. Only one more….. I’m even starting to count down the weeks he has to have the Hickman line in.

Technical update

Joe has finished his first intensification phase of treatment. It was 6 weeks of different patterns of different drugs. Some old, some new. Some obviously horrible: the doxirubicin was livid orange, and can only go into a large vein like the vena cava or it causes too much damage. Yes, you're right that is the vein that goes straight into the heart and yes it can damage the heart. Some less obviously horrible: the vincristine is a regular, but the doses in intensification reduced his calves to twigs in a couple of weeks. Some just awkward: the cytarabine had to go in through his wiggly every day at the same time for two sets of 5 days.

But it hasn't really been that bad. He's had a spell in hospital, but he wasn't very poorly, and was only in for 48 hours. In truth, if you get a temperature when your white blood cells are low, you have to go in, and the minimum stay is 48 hours, to get samples tested for infection and to take in a good solid dose of antibiotics. So he got off as lightly as you can. And they didn't find any infection either, so it was a bit of a false alarm. You can't get off lighter than not actually having anything wrong.

He's neutrapenic now. Which means he's got very little in the way of resistance to infection. The cytarabine has been knocking out all his bloods: he had a red blood transfusion last week and almost all of what they gave him has already gone. So his marrow has had a really thorough clean out. He could pick up an infection and have to go back into hospital at any time. But he's happy enough. And as long as he's got the energy, we'll keep sending him to school. We have to keep his mind and soul healthy as well as his body. And his bloods will pick up again soon.

Because of his low red blood cell count, his energy is a bit low and he's snappy and grumpy and quite unruly at times. But at least he can be shown it, and you can get a smile out of him and weedle him out of it. That's not an option when he's on the dexamethazone: he has no sense of humour.

So it's silver linings, as ever.

And we're looking forward to a couple of months of an even keel, hopefully. Just low level treatment. Vincristine and dexamethazone, but in reduced doses; and some other stuff.

Scrawny little toad

There was a time when there was nothing I might like better than the idea of my little sister's take-away going cold before she could eat it.

There were times when I was tempted (and actually attempted) to strangle her.

I broke 2 toes trying to kick her once. Another time I climbed onto a chest of drawers to reach her on the top bunk, but fell off and was concussed.

I missed treats, was threatened with hideous punishments because of her. Sometimes this was because the scrawny little toad had done something unspeakable and wouldn't own up, like steal and eat all the chocolate footballs from a jar set aside for treats for Christmas of 1978. And sometimes because the scrawny little toad had wound me up until I couldn't contain my fury, and then she told on me.

Oh yes, the idea of the rest of the family tucking into a tasty take-away while she wasn't there would have filled me with glee.

But tonight I just feel guilty and grateful.

Thank you Theresa for becoming a nurse and a star. Thank you for doing Joe's cytarabine syringes for 10 nights these last two weeks. Thank you for looking after us and supporting us and loving our children. Thank you for coming round to do Joe's cytarabine tonight, even though your take-away was sitting on your kitchen table being devoured by the rest of your family. I hope they left you some and that it wasn't too cold.

It nearly makes up for the chocolate footballs. By the way, well done for finally owning up. In 1998.

Spelling test

Joe's chemo drugs, in order of how obnoxious we thought they were to him (or made him):
Doxyrubicin (it even looks obnoxious: it's bright orange)
Dexamethazone
Vincristine
Cyclophosphamide
Cytarabine
Methotrexate
Mercaptopurine

Joe's side-effect drugs:
Corsodyll (wow that stuff is disgusting)
Allopurinol
Ondansetron
Rinitadine
Listerine (replaced the corsodyll and, incredibly, was still the thing we had most trouble getting Joe to take!)
Heprin
Lactulose
Co-trimazole
Various anti-biotics and anti-fungal stuff on drips in hospital

Blimey. When you write it all down it's quite a list.

The Ondansetron sounds to me like a machine from Barbarella. Do any of them remind you of anything?

Perspectives

I 've taken down the last post, containing the very explicit photos of Joe and his various bits and bobs of treatment stuff. I hadn't really thought about much more than how I feel about it all, and what I can do to get the family through it. And, of course, to include friends and family so they could know what's going on. I hadn't thought how others might feel about it all.

And that's how I came to take down the post. At first I thought that it was censorship: that I was not allowed to show pictures. But it wasn't that. After all, there have been plenty of photos and some of them have been a laugh.

Then I thought it was shame. We can't be ashamed of how Joe looks, I thought. We should be proud. Maybe I was being proud in putting the photos up. It's not exactly something to be proud of. OK then, at least not ashamed. But it's not that either. We don't hide his shiny head when we go out. We don't lower our voices to a whisper to say the L word.

And it wasn't disgust either. The only time I feel anything approaching that is when I see photos of Joe fit and well. Lou has one of him and Jack at the start of treatment, and he looks healthy and handsome. And it's true, he was. But most of the time I see him as he is and I don't think anything of it, and he is healthy and handsome (no, seriously, he feels that way to me) except when I see what he was like before and then I just feel a bit melancholy. Anyway, he's obviously going to turn out handsome: heredity is a powerful force.

It turned out that it's pain. It just hurts Sue to look at him in pain or somehow disfigured and uncomfortable. To experience his mood swings and to think that this could be him. And the photos remind her of that. And maybe, in a small way, there is a little mumbo-jumbo: the more people who see him like this, the more like this he somehow is.

I hadn't thought about how other people feel about Joe's illness. I thought they fell into two camps: the ones who look after him, (which include me and who therefore, by my own limited emotional logic, all feel the same as I do), and the ones who want to know how he is and are sympathetic and concerned and interested. But it's much more complicated, because all those people who I thought felt just like me, well, they don't necessarily.

Yes, I know, Welcome to the world. And Duh, obviously. etc

It just wasn't obvious to me. It was a bit of a surprise. I just thought about how I felt and what I wanted to do. I think it's the teacher in me trying to teach everyone about it all.

An update with no real title

I'm sorry I haven't written for ages. It's hard to fit everything in. Going back to work really flattened me, but even during half term I couldn't find the time. These things build up, and the more they build up, the more you put them off, and the more you put them off, the more they build up, and so on. It's like emptying the compost only not as smelly.

Joe has been quite poorly, quite well and also very well, and it's all very interesting, a bit sad and sometimes quite funny.

His boot things that he has to sleep in are really scratchy anyway, and then they have loads of velcro stuck on. He is not pleasant to share a bed with. They were newly and snugly fitted in January, and you can fit 5 fingers down between the sides and his leg. The muscle just vanished with the treatment.

His hair fell out again too.

But that meant he could have a tattoo on his head.

He's got his "Wiggly" or Hickmans Line in now, and it's pretty gross to look at without the dressing. It just emerges from his chest or from under the enormous white sticky plaster that covers the exit site. It's white and tubey. Largely, I suppose, because it's a white tube. And it has some clips on it to stop stuff coming out or in most of the time. And special bungs on the end to plug syringes into. I find it intriguing in a kind of rubber-necky, voyeury, bravado-showing, horror-movie, behind-the-sofa-Dr-Who-watching kind of way. That's to say I know it's gross, it freaks me out and I have to give him a long hug after I've changed the dressing, but I can't help but look and want to show I can do it without being scared, even though I am scared.

It goes up his chest below the skin, and into a vein in his neck, then down the vein. You can see the scar on his neck, and there's a white bit where you can just see the line rising like a white tendon and going into the vein. It's not visible anywhere else, only there.

During the treatment Joe's blood counts dropped and he got a brief temperature, which is enough to see you into hospital for 48 hours, plus the 4 it takes to lose and find your records before discharging you (well done NNUH: they did the same for Sue when she was in).

He was on the steroids and he went a bit food crazy again. Here he is making a shopping/meal list when he got home. It was pretty much the only time he stopped talking about food(well, ranting is a better verb, and many might say banging on, or obsessing, or moaning: I expect you get the picture - thank goodness he doesn't talk in his sleep - it might have been more than we could bear). See if you can read what he was into eating this time. His writing is getting very good.


He can have a bath and all that, but the line has to be covered up with sticky dressing. It's very peculiar putting on gloves to touch your child. Not, I accept, as peculiar as the white tube I'm trying to coil up and cover where it disappears into his chest.
It took a few days before half term, but once he had settled down from his hospital stay and finished his steroid course, he settled right down. In so far as a 5-year-old can settle right down...

From Photos of Joe

You should see him on his bike too. Standing up in the seat to pedal and sticking his little backside out so that he can go faster. It's doing his legs a power of good. And us too.

There's a worm at the bottom of the garden and his name is Wiggly Woo.

Joe has got his Hickman's Line in now. He had a longer operation in Cambridge on Weds. Waited from 8 til 3 with no food or drink!

They made a hole in his neck and went down a vein, then dragged a line through the skin on his chest and into his vena cava. Or something. He was supposed to have a single line, but the surgeon put in a double by mistake, so it's a bit more bulky than it could have been. While they were there they took a bone marrow sample and stuck some chemo in his spine.

He's absolutely exhausted. He had 3 chemos (one in spine, one in drip into chest line and one syringe into chest line) on Weds and Thurs. And he's back on the steroids, double dose. So he's tired and grumpy, with minimal sense of humour. Not very hungry either at the moment. His neck is sore from the operation and he doesn't move it much, so he looks miserable and uncomfortable.

The chest line is mostly refered to as a Wiggly by children. It is white and comes straight out of the skin. But we haven't seen that yet, as there is a lot of dressing on the site. The tubes are kept in a cloth bag that hangs round his neck on a piece of ribbon that's turning his neck green. He has to keep the dressing on, undisturbed, for 3 weeks, to reduce exposure to infection and reopening of the wound. So no baths! Well, no showers or swimming anyway.

He was back at school next day, though almost asleep at the dinner table afterwards. And now he's got hyperactive Uncle Mark visiting! He loves him of course, and does his best to keep going.

Sammy has found the whole thing disorientating: he has also started nursery this last 2 weeks. We've had wet trousers and waking up crying since Joe went into hospital. But the rest of the time he is fine, especially with Uncle Mark.

It's been a busy time. Lucky I took my paternity leave now.