Forward pass by Andy Hughes

It's been 6 games since I last saw Andy Hughes make a forward pass. He hasn't played all the games (thankfully), but he's featured in most of them. I have developed something of an obsession: can't help counting his passes. No forward passes completed in 6 matches, playing right mid-field. None at all. Tonight he got put at left-back. Not much to pass to behind him, but he managed a few backward passes all the same and then ... a transformation. I counted at least 6 forward passes. 3 crosses too. The whole team played well. They won 3 - 1. Would any clubs like to buy a utility player, great enthusiasm and energy but not much skill? He's still got to go, even though nobody laughed when he applauded the crowd this time, and some people even chanted his name.

On a less important note, the family are well.

Joe doesn't have to wear glasses any more! The detested eye patches and the not-very-regularly-worn glasses did the trick at last. Maybe if he doesn't take his chemo properly too, the leukemia will get better.

Sammy has got his ASA swimming level 1 (a 7-year-old boy in my year 2 class got his level 2 the other day, so I reckon Sammy must be doing well for a 3-year-old). He has the occasional kick from the polar bear, so his pregnancy is progressing smoothly. He is getting a lot of tummy aches and leg aches though, which require exercises (just like Joe's) and attention. And occasionally he lies on the floor and says he's dead and needs some medicine, which is actually quite sweet rather than upsetting.

Joe has started to be a bit nicer to Sammy. He sometimes acts as if he is a parent and sometimes a sergeant-major. But he's working towards brotherliness. And Sammy does wind him up something rotten.

Tinsel is turning into Alien. You can watch her squirming around beneath the skin. Sue's stomach undulates and bulges and threatens to burst. Three weeks to go. Sue's stopped work and is now undertaking a gruelling schedule of coffees and lunches which leave her drained at the end of the day, poor thing. Mustn't take the mickey: I came in late this evening, went straight out again and came back at 10.15, which didn't give much bedtime-boy-support.

I'm sure Sue understands. After all, Hughes DID make a forward pass tonight. I had to be there to see it.

Tossing coins

Joe's bone marrow sample results came back on Monday. The Minimum Residual Disease (MRD)test was positive or high risk, depending on who you talk to. The risk refers to risk of relapse, which involves more intensive treatment and lower survival rates. We had to leg it down to Cambridge at short notice to discuss the next phases of treatment.
Joe has been in the lowest risk bracket throughout his treatment: no genetic problems, low count at start, good initial response. We were entered for a trial where he could have even less treatment than normal to see if it still worked. But the MRD result put paid to that.
The doctor wanted us to enter a different trial, where children with higher risk of relapse got either the normal treatment from which some would relapse, or the more aggressive Regimen C from which they thought fewer would relapse. Naturally the more intense treatment involved more chemo and more side-effects.
"What do you want to do?" asks the doctor.
"What should we do?"
"I don't know."
That is correct. He didn't know. And he wanted us to enter the trial, but he couldn't push it on us, because that's the rules. So, in fact, he couldn't help us at all.
No matter what we asked we couldn't get through. Except when we sounded like we were leaning away from the trial.
"It will in no way prejudice your service."
"Whichever way you decide, we will be able to make a strong case that it was the right decision."
"Children get used to the side-effects and they reduce. And at the same time there may be less chance of relapse."
"We don't know if it will definitely reduce the chance of relapse, but that's why we're running the trial."
He did his best. Or nearly did. He tried to say he would put his own child in.
However, noone could say that Joe needed the heavier treatment. Or that it would prevent relapse.
We had to go out and ring my sister.
I think one of the other doctors gave ours a hard time while we were thinking about it, but I don't know if it was for not selling hard enough or for selling too hard.
This was the clincher: in the trial he has a 50:50 chance of getting Regimen C or what he's already on (Regimen A). So even if he went in, he might not get it. We decided to stick with the might.
We always worried about the treatment making Joe sicker than the disease. We couldn't justify making him still sicker, just to see what happened. And basing that decision on the toss of a computerised coin.
With some decisions you never really know if you made the right one. With this decision we will have to live with it. The only really helpful thing is that he only ever had a 50-50 chance of getting Regimen C. They said they would not have allowed him to go onto Regimen C without the 50-50 randomisation.
I'd love to know what the doctor really thought. He said we'd made the right decision, but I think that's in the rules too: he has to.
We're not tossing a coin to decide what happens and we're not making him sicker on purpose. I wish that made me feel better.

Sammy, Tinsel and the Polar Bear

It's hard to keep up an informative blog when you're back at work. However, the lack of much happening has been of great assistance!
Since the great shave-offs the most obvious thing is that hair has started to grow back. Even Joe's. His is very soft and downy, with the odd little sharp bristle that didn't come out before, and so got cut. Everyone else's is growing, apart from Uncle Dave's: he's already cut it again.
Also Joe has started to lose some of his padding. The skin on his face is less puffy, and some little scars are showing again. Previously everything was sort of bloated out. He is still quite round: his appetite was always healthy, but he used to be much more physically active. Now he lacks physical confidence: he worries about his legs, feels little niggles and expects to tire quickly. So the weight is staying on him for the moment. We're going to visit Jack at Centre Park on Saturday. That should get him active: he's looking forward to cycling and swimming.
We know more about his future treatment. A central line will go into his chest at the start of January. He has an intensive 6 weeks treatment, administered in Norwich. I might even get to give him injections (I know I shouldn't get excited about it) at home. And then treatment eases back to what it is currently: daily chemo tablets, weekly antibiotics. For 3 years. You can see why the injections are exciting: 3 years of tablets certainly isn't!
Sammy finds Joe's illness tricky: he has to reaffirm his status as youngest and neediest every time Joe goes into hospital for day procedures. So it's wet trousers, crying, having to be fed, sitting on knees etc for two days a week. The rest of the time he is absolutely lovely, though.
Tinsel is due on 19 December. I should be taking paternity leave, everything I am entitled to, after the Christmas holiday. It's a bit fiddly though, as we don't know when Joe's chest line goes in exactly, and it will have to be me that goes to Cambridge with hime for it: Sue and Tinsel won't really be up to it. To make life simple, I need to take the leave around the time of the operation. However, nobody can tell us yet. I still haven't blogged my musings on the NHS (which are almost entirely positive and enthusiastic, in fact).
Sa,mmy's got a shock coming when Tinsel arrives, I think. We have explained it all. A lot. So much that he's decided he is going to give birth too. But his will be a polar bear. A friendly one. Called Lily. It's coming at Christmas. We've explained. Really we have. He's more or less got the idea. But yes, you're right: it is still going to be a big shock! But we will actually give him a polar bear to help him through some of it. And if the polar bear later gets a little sister... Well, Sammy should know what to do by then.

Uncle Mark unifies titles

Uncle Mark has unified the Looney Uncle titles and become Undisputed Looney Uncle Champion of the World, leaving Looney Uncles Dave, Al, and Sid to shake their heads and gape in awe. Another uncle, Faintly Dotty Uncle Si, has also been unceremoniously dumped out of the running. Great work, but unlucky, Guys! You all get an honourable mention, but just check out this video.



What a fruitcake! You may not be able to make out the full extent of his lunacy. So just in case, here's a photo

From Shaved heads

Meanwhile Joe has done another whole day of school. He has a temporary tattoo on the back of his head, which he is very proud of. His songs get ruder and his voice louder and shriller. He never seems to stop. He is down to just one medicine, once a day. But I'm thinking of upping that: the side-effects of less medicine are getting too much for my head. He has another couple of weeks on this level of medication (it's 60mg of oral mercaptopurine if you're into that kind of knowledge) with weekly lumbar punctures (intrathecal methotrexate, don't know how much) and then things start to get heavier again. Enjoy it while it lasts they say. He certainly does!

Pampa and Uncle Sid go under the flashing blade

See the Shaved Heads photo site for photos of Pampa and Sid.

See below for Joe shearing Sid. And accidentally knocking the guard off to administer a zero clip.


Pampa and Sid each reckon to have raised over £200 in sponsorship for their shearings! Great going guys!

Easy, Tiger!

Joe did a 6 o'clock start, general anesthetic, return trip to Cambridge. Followed by Halloween party and Trick-or-treating in the rain. Up again today. Full day of school, outside playing for all the breaks; went round to friend's for tea, played and sang rude songs and larked about for 2 hours. And then wilted onto the couch and said barely another word.

Completely knackered. Totally overcooked it. No idea when to stop! Came home, had to be carried to dinner table and was so tired he couldn't lift his head off the table to eat. Carried to bed. Conked out shortly after.

So do we send him to school for the whole day tomorrow if he wants to? Still deciding, but it doesn't look like he's going to stop of his own free will. And he has to be ready to shave off his Pampa's and Uncle Sid's hair tomorrow night.

It's great to see him so keen and full of life again though. It's just a shame that we may have to rein him in. East, Tiger!

From Photos of Joe

Adams Family or Apocolypse Now. Take your pick. Joe out of costume on Halloween.