That's more like it

Joe's blood counts came back really positive today.Everything is up. His neutrophils are at 2.9, white blood cells 4.4, platelets 515. Almost all within normal boundaries. Really good news. They must have been able to take a decent bone marrow sample this time, which means no more visits to Cambridge until December. Also don't need to worry about infection too much at the moment as he actually has some resistance, which he hasn't had since this all started.

It will change again, of course. And probably with little warning. But great for now.

And he did a morning of school yesterday. Played outside with everyone. All good news. And everything improving.

Trick or treating tonight. And apple-bobbing, for the more traditional.

Raised lots of money!

Well done everyone! We have broken through the £1000 target!

Especial recognition needs to be directed towards Uncle Al, whose splendid efforts have totalled £200. Extraordinary work, Al. Get that mop off and send us a photo.

There is still plenty of time. Pampa will be shorn by Joe on Thursday. Tom has put his name down for Sunday. Matt has gone down to an arty, utilitarian Zero clip. We have until February. In fact the donation site says we think "about 30" so if we don't get the thirty I think we can still hold onto the donations.

Joe is really at home with his hair. He enjoyed cutting other people's hair, and then the big shearing day party. He is not at all self conscious about having no hair. So well done everyone! It worked, and we have raised a lot of money in the process.

My head's cold, though.

Back to school

Laptops are great. I am sitting in the STS garage, waiting for the exhaust to be changed on the Fiesta. Never a moment wasted.

Joe goes back to school tomorrow. We all do. He’s looking forward to it. But he’ll only do a couple of hours, maybe more if he wants to. I don’t know what it will be like. One of his friends didn’t recognise him the other day. His appearance has changed a lot: no hair, big round cheeks, big round tummy, serious face. It’s not a surprise, but we didn’t think of it. Should have kept his hair on until he’d done a day or two at school, no matter how thin it got. At least he would have looked a bit more like himself. Oh well.

Joe has had an overdose of adult company these last 5 weeks. We’re worried about how he interacts with other children. The steroids made him grumpy, and that is starting to wear off, so he’s got more willingness to chat. But he isn’t keen, and has needed adult help in playing with friends sometimes. Going back to school should help. But he can’t run around much: his energy levels are low, and his red blood is generally low, and his legs are weak still from the steroids.

You just have to keep telling yourself how ill the leukemia would have made him. But even so, I look at how weak and ill he is now, and it gets me down. It was only 5 weeks ago that he was running around. And on Friday he went to the physiotherapist; we thought it was to get some exercises to strengthen his legs, but it wasn’t. The chemo affects nerves that control the feet, and he has to wear special strap on boots in bed at night (they’re like ski boots made out of that stuff they make plaster casts for broken bones out of now). They stop the muscles at the back of the ankle from extending his foot. It’s called foot drop, or drop foot (one of them, or both, I dunno). It’s a precaution. However, he can't walk to the toilet in the night now. He has to be helped. So chamber-pot or shout for Daddy? I haven't persuaded him of the benefits of a chamber-pot, but I will!

He fell over outdoors the other day. He had his hand in his pocket, just like we were always told off for. And it’s true: you do bash your face (I never believed it when I was told). Luckily he just lightly grazed his cheek, and his platelets are high (in his blood) so there wasn’t any blood or big bruises. Spooked me though: I had to hold his hand on all steps the rest of the time. Turning into the fussy parent, a bit embarrassing, a bit intense, a bit stifling. The one I really didn’t want to be.

Bone marrow and lumbar puncture Tuesday in Cambridge. Very early start for Sue and Grandad. Hope they get a decent sample this time.

Counting chickens

Don't count them til they've hatched!

Joe's bone marrow sample showed too few new blood cells, and so the doctors say he cannot be deemed to be in remission. ie he's not better enough. His marrow has to have recovered enough to be producing relatively healthy amounts of healthy cells. And it isn't yet. So they can't start the next phase of treatment fully (they have already started it, though: the lumbar punctures and the Vincristine).

That's sort of fair enough: everything was down in his blood yesterday except platelets. So he isn't bouncing back up the way he should at this stage of treatment. The doctors say they are not surprised, this does happen etc etc. Writing it now I suddenly feel sceptical, when I hadn't before. Normally blogging makes me feel better.

Anyway. They want him back for yet another attempt to get a decent end-of-phase-one bone marrow sample, next Tuesday, in Cambridge, at 8.30am. At which point they will also give him some more chemo in a lumbar puncture, since they need him to be under general anesthetic to do it. Two birds, one stone etc. No point giving him any more generals than is necessary. Quite how, when they are continuing to bombard him with noxious chemicals, his bone marrow is supposed to recover, I don't know.

Truth be known, they should really have taken (and noticed) blood counts before the last two procedures, and at least one would have been unnecessary. At least that's what I reckon. Me with my degree in History. What? It's got an H, it ends in a y. It could be Haematology. Being a doctor must be like being a football manager: everyone thinks they could do it; everyone's an expert.

OK, so they're the experts, and I have to trust them. And I trust authority. I just do. But authority does need to be either highly competent all the time or good at appearing to be, even when it's not. Or completely open, I suppose. One of these days I shall muse on the health service in depth and what I think it's for and stuff. But maybe not while I still want my sisters to do favours for me.

Really, I am just disappointed because we thought Joe was not going back until December. And now he's going back in 6 days. And that isn't anyone's fault. It's just ...

Shaved our heads today though! To see the heads so far use the link on the right: Check out the Shaved Heads. My favourite is Alfie's. You can flick back and forth all day: hair - no hair - hair - no hair etc. Also note that Joe was supposed to give me a No.1 cut. At a crucial moment the plastic guard flipped off, and Joe carried on cutting. Left a pink road right across the side of my head. It was an accident. Just. So I had to have a No.0 cut. And only fair really, since that's what we gave Joe.

From Shaved heads

The shaving has begun

This is Uncle Dave. He is the very first shaving. And Joe got to do it. Didn't do a bad job either.

So it's kicked off.

But we are running a bit short of volunteers! We have until Feb on the web-site, so maybe we could stretch a point and some of us could shave twice, even closer the second time. I guess I should get a shiney when all Joe's hair really falls out.

So step up! Or stump up! The link to sponsor us is on the right here. A lot of people are shaving AND sponsoring! Just do one! Ignore the large amounts of money of you like, it doesn't have to be much.

News-wise: we went down to Cambridge today for Joe to have another bone-marrow sample taken and to talk to a doctor properly. All done now. He's also had another dose of Vincristine (Vinc), on top of some Methotrexate (MTX) last Friday. Ooof!

The doctors are very happy with Joe's progress. Everything is within expected bounds. His leg weakness is from the steroid and also the Vinc, and it will pass. His voice is OK (but funny). It's all fine, or at least no worse than could be expected. Some people get weak arms, some weak legs, some weak bowel muscles ... So it could be worse ;) (Actually weak bowel muscles causes constipation, not the opposite; not so unpleasant for us, but really painful for him).

We know more or less what is going to happen all the way up to February. Give or take a dodgy blood count before a dose of chemo or an infection (both quite likely). He has only 2 trips to Cambridge in all that time: once for another bone marrow, and once to get his central line put into his chest so drugs can go into his vena cava (yes, that would be his heart and yes, one of the drugs can cause permanent damage to the heart, but the damage would be rather worse without it). The rest of the treatment can be done here in Norwich, just 5 minutes from our home. Fantastic! There is quite a lot of it though. He has a general anesthetic every Tuesday for 3 weeks to put MTX into a lumbar puncture, for starters. Then there's more Vinc and more steroids (just a few days a week, so hopefully no more food obsessions, though it's tough coming off them again, we're told).

Had an impromptu huddle of the family tonight. The Bowleses came round first, followed by the Peacocks. Joe coped well (cut his Uncle's hair off, if that's coping). Sammy's back too. Bit of a party, and we are very grateful: we had a lot to share. 3 nurses in the family gives us a lot of backup, a lot of knowledge and a lot of inquisitive visits, all welcome. We get through a lot of wine and cheese too.

Not a very deep blog tonight. We're all feeling very upbeat: fully informed from hospital, free from hospital, supported and in control.

Now we have to start thinking about wark. I can't even spell it. How on earth am I going to do it?

Homecoming blues

Well the high is over already. The good things don’t last long. It’s back to feeling sorry for ourselves again.

Back at the hospital Joe was a relatively healthy kid in a ward full of really ill ones. A small fish in a big pool. Now he’s the only ill kid around. A big fish in a little pool. And we can only compare him with Joe a month or two ago. No, just a month ago. And the comparison is scary.

But he is getting his sense of humour back. Sort of. He still doesn’t laugh at anything I do, just tells me to go away and stop irritating him. Quick learner, maybe.

Blimey that chemo does you in, though. I just looked up the side-effects of Vincristine: vulnerable to infection (knew that), hair falls out (fair enough), stomach upsets and vomiting (OK …), constipation (oh), possible bleeding gums (oh dear), bruising (er), blurred vision (what?), tingling hands (eh?), problems walking (woah, that’s enough), speech difficulties (oh, just stop). It’s not a placebo that’s for sure. And that’s just one of the drugs.

Actually all the chemo drugs do similar things. He’s had vincristine and methotrexate so far. Starts mercaptopurine (?) next.

And Joe is suffering the side effects: his legs gave way 3 times today. He couldn’t walk up the stairs and he couldn’t climb into the car. We rang the hospital. Apparently the Vinc weakens various bits (knees and ankles). Joe’s squeaky voice is another side-effect: the Vinc weakens the vocal cords. He has once or twice complained about fingers and eyesight, but hardly at all. This is really scary now. And we’re taking him back to hospital tomorrow to have some more.

And we thought it was bad leaving him crying on the bottom step for hitting Sammy or turning off the landing light when he wouldn’t stay in bed (well it felt bad when he wailed). He hasn’t even done anything wrong and we’re doing this to him.

Give me that Parenting Contract. I want to read the small print …

So what happened?

We did a bit of extra birthday for Sammy and everyone, since Joe, Grandma, Grandad and Daddy had missed Sammy's birthday. He got a scooter (like the big boys), a toy keyboard and a wizard suit.

While we were away, Amos (the immaculately turned out doctor) came to an informal agreement with Grandma and Grandad. There is a little gastro-enteritis going round the ward and he would be happy to have his arm twisted to send Joe home if his neutrophils got above 0.6, to get him away fro the infection-risk.

This evening the blood counts came back, and the neutrophils are 0.9! Ha! Yes! Get in!

So we held him to his word. The nurses rang him at home (he was on call, we didn't make THAT much of a fuss). He said OK, but come back Tuesday to give a bone marrow sample. Carol, chief nurse & ward manager, had got his meds ready before she went on holiday, thinking we might be out last week. So they were ready.

It took about 2 and a half hours to get everything sorted: instructions for meds, forms, packing, thank yous, goodbyes etc. And we were off. Joe started talking after about 15 minutes, and then didn't really stop until he was in bed with a tummy full of noodle soup (latest craze). But he didn't talk about food all the time. He chatted about Halloween. About how he'd known he'd be out before Christmas. About ghosts. About Sammy. Legoland. Uncle Mark. The road. And a bit about food. But not much.

He was completely charming and lovely, and apart from the odd squeaky voice, very much The Old Joe.

He helped cook dinner. Fed the cat. Checked the house out a bit. Had dinner.

Then went upstairs to go to bed and found it harder than he'd remembered. In fact he had to pull himself up on the banister. And then at the top his legs gave way and he just fell over. And didn't want to try getting up for a while, so we did his teeth and pyjamas there. So we had briefly forgotten that he is really ill. But now we remember. It was scary, but not totally unexpected. And he was utterly exhausted and so happy to be home. He did his mouthwash with barely a murmur and smiled himself to sleep.

Joe's home

We trudged back down to Cambridge, weary and low. Forgot to set the dishwasher. Forgot Sue's pre-natal tights. Filled car with stuff: birthday presents for Sam, Joe's bike, birthday lunch, cake, guitar, laptop (but forgot the wireless card, so it would have been useless). It was all a bit of a grind, but we were looking forward to seeing Joe, who Grandma and Grandad said was rather down.

Now here we are back in Norwich, with Joe. We got back at 8.30 pm. Had to bring back all the stuff we had taken down, plus all the stuff we had accumulated in Cambridge (food, toys, books, toiletries, clothes: both on the ward and in Acorn House). We had to borrow a trolley from the ward to get it all out to the car. And it's 10.00 and we're still unpacking the basics. Well, Sue is. I can't get her to stop.

I have

Our first bad news

Day 28 came and went and Joe is still on the ward. The doctor said his neutrophils were too low. So the bone marrow sample they took probably wouldn’t work in the MRD machine. So they can’t set us off on the next phase of treatment. So we can’t go home.

Not exactly Bad News, since it doesn’t mean Joe is any iller than we thought. But still bad news (lower case) since we can’t take him home.

We had set our endurance for 28 days. Mine expired yesterday, so I found it pretty hard to take. I hadn’t realised how sapping this has all been. Yes, this last week has dragged. Little things have seemed much bigger. We’ve all been quicker to tears and upset. But we could hold it together because we only had a little way to go. Noone could tell us how much further and that was the really sapping thing.

Now they have told us it IS further. But of course they still can’t say how much further.

A week. Prepare yourselves for a week, Doctor Amos said. But of course we will spend the time expecting to get out sooner. Let’s hope we’re not disappointed this time.

We don’t now know if we can stick to our plans for going back to school (all of us) on Monday after half term. And noone can tell us. Sorry, everyone at school, but we don’t know. None of us can really come back until Joe gets out. How much space do we need after that to get ourselves together? Don’t know!

Anyway: his steroids are now on a reducing dose. So pie intake should start to go down. He still has to take all the precautionary stuff: anti-reflux, antibiotics, anti-bacterial mouthwash, anti-dandruff etc. And he will carry on wanting pies, but he just won’t be able to eat them.

And we wait for his neutrophils to rise. Basically, the chemo wiped out the cells being made in his bone marrow (almost entirely leukemic cells at the time, at the expense of any useful blood cells), and now the marrow has to resume production of the other cells. This is made difficult by continuing chemo, but not as difficult as it makes production of leukemic cells. He can have transfusions to help with red cells and platelets (though he hasn’t needed platelets: they recover first and have been more or less OK), but he has to make his own white cells and neutrophils, and they recover slowest. Noone knows why Joe’s leukemic cells responded so well to treatment (by all dying) but other cells have not responded so well. But also noone thinks this is especially unusual or worrying. And we trust them. Well, we try to.

There was some Good News though. Norwich have 6 points from 2 games with Peter Grant in charge. Worryingly, there is no change in tactics or personnel that this can be attributed to. If the only problem was Nigel Worthington, I think it might have shown up earlier. So I’m not convinced. But I feel a lot better than I did yesterday, so thanks Mr Grant anyway. And Dickson. Bowla says that was the #### #### goal he has #### seen in ### #### #### (hyperbole deleted, but at least partially deserved).

And Joe really really loves his multi-vehicle lego set, Paul and Sarah. He's made nearly everything. Check out photos.

The space bath, in orbit. Note asteroid debris on floor. Sue is there to show how high it used to go.

Joe update 9

Joe is fine. Last night he was exhausted, but still couldn’t get to sleep until 8.30. He slept in until 8.30 though. It’s much harder in a room with 4 beds. When Mike TV was in the next bed and his dad came to sleep over, Sue thinks they were still watching DVDs at 2 am! (You can’t see a clock from the beds in here.). He’s 9 years old. She grassed them up to his mum next day and she went spare: she’s separated from the dad. Oops. The following night baby Mo moved into the ward and cried every hour on the hour all night. So not much sleep for Sue. Luckily Baby Mo went home before last night. In fact it was a very settled night, apart from the start.

The start of the night: Joe going on and on and on about food. “No, Daddy, we haven’t worked out what I will have for lunch tomorrow yet!” “What about mash and gravy and a pie?” “No” “What about …” “NO!” etc etc. For any topic of conversation substitute food, and don’t expect to distract him or change the subject. It won’t work. At all. Then lolling on the bed saying he’s too tired to take medicines or brush teeth. That didn’t get much sympathy. Though in hindsight it should have done: he was exhausted. We eventually got through it all, and then part way through the story we fell out over something (can’t even remember what) and he rolled over and started trying to go to sleep. I let him, but it hurt. It’s like he’s turned into someone else, who I can’t communicate with properly. Of course he hasn’t though: he was exhausted, and although the steroids affect his mood and his appetite, he is still Joe really (just a slightly one-tracked, round Joe).

I did feel that Joe’s treatment was taking him further away than any illness had. That was something I had feared from the start. Or rather I had feared that it would make him iller than the illness had. In truth, what it has done is made him fatter, balder and grumpier. Anyone would be able to see the hand of heredity at work there, though. Anyone who knows his dad anyway.

I feel much better today. We have done some of the routine things, which I find reassuring. The transition between hospital and home is difficult, especially when you make it on your own. Sue came home to Norwich upset the other day, and I found last night very hard. Yesterday we only saw each other for a couple of hours before Sue went off back to Norwich.

Joe’s routines:

Getting dressed (he likes to get dressed as soon as he’s up, which is great because it feels less like he’s ill) and arguing over whose pants he’s been given (“These are too small: they’re Sammy’s!” - they’re not - he is temporarily much larger, but what can you say - “You ate all the pies”?).
Take meds (he’s really good at this now, and it goes very quickly when breakfast is in sight) - today 6 syringes and a tablet - all oral - plus a cup of water and two wine gums. Give blood.
Get breakfast - cooked every day now. Sue has moved him onto cooking his own food, to try to soak up some of his obsessiveness. Today it was two fried eggs on two bits of toast. And a fruit smoothie (it’s not 5 a day, but it’s a try)
Brush teeth and do mouthwash (which means going back to the ward) - much better at this too. I dip a sponge lolly in mouthwash and rub it all round the inside of his mouth. It used to be like using a red-hot poker, but he is much better. The citrus Listerine is ok. I tried the stuff they gave him the other day and it really is disgusting. I’m not surprised it freaked him out.
School (10.30 to 12.00) - teachers are nice, but he thinks they work him too hard! He’s used to a day with work spread across it, gradually intensifying. Here he has an hour and a half of work. And the rest of the day to play/learn. He doesn’t notice the rest of the day though. Of course. He remembers Reception as school.
Get blood results. Text other parent.
Lunch (12.00 - 3.00?) - a large number of lunches/courses. Often involving a pie. Sandwiches. Mash and gravy and peas. Cream crackers and smoked Bavarian cheese. Cherry tomatoes (if we’re lucky). Noodles. Crisps. Nothing sweet!
Afternoon - when visitors are usually here. Play Junior Monopoly. Top trumps. Scooting. Watching videos. Out and about.
Evening - dinner - see lunch.
More meds but a vitamin gum instead of a wine gum.
Wildlife TV programme if we can find one.
Bath, sometimes (but the hospital laundry has broken down, no seriously it has). Pyjamas. Story. Bed. Me: Glass of wine in Acorn House plus guitar or TV. Bed on ward.

Fascinating, I know. I am just getting more and more into the detail of what we’re doing. Less of the bigger picture and more of the detail. We need to get out of here, I think.

I have just written this on Kayliegh’s laptop, while Joe was at school.

Update 8

The start of week 4. As we find out more about how things work we get more jumpy. Now we know that noone should come onto the ward if they are ill at all. Today Patrick and his family were to visit, but couldn't as Patrick is ill. I have brought Sammy home as he seemed poorly this morning. Of course now he is fine, if a little nasal. He's on the laptop doing an "educational" game (it was in a Free Software for Schools initiative, and is therefore stuff the software firms couldn't get rid of any other way).

Joe is fat. He has a tummy that sticks out like a ball. And his face has gone round. And most weirdly of all his voice has gone funny, a bit squeaky, almost teenage-boyish. And he is outrageously grumpy at times. Last night I was worried because he said he didn't want to go back to the ward : I thought he was finding it upsetting and wanted to go home, but then he started ranting about how there was no food on the ward because it was the weekend and he was hungry and he wanted food and there was no food on the ward and he was hungry etc etc etc. I eventually got him back by promising him a cracker with cheese. So his tummy continues to get rounder. The nurses and doctors assure us that he will lose it all as soon as he comes off the steroid. It would be reassuring if there were more children on the ward with the same diagnosis and at the same stage, so we could see that it happens to everyone. On the other hand, thank goodness that it is a rare diagnosis (even though it's the most common form), because that means fewer other children get it.

Joe is otherwise OK. His blood counts are not great. He is still very low on neutrophils (so he is neutrapenic, which sounds flash but isn't), and his red blood cells are still low but recovering. He just had a low platelets count but the doctors think that could be a mistake as they were good before, so they'll test again tomorrow. Any idea he would be out tomorrow was far-fetched. He has to be there on Friday for his bone marrow & lumbar puncture & probably they'll put the line into his chest (though I'd rather they didn't), and I can't see him coming out between now and then, nice though it might be even for a night. So we hope Saturday now. He has low sodium, which noone really understands, especially given his growing crisp habit, but it may be due to the high volume of fluids he still gets through (which may be a lot higher than he's used to?). It's currently wait and see time, which it has to be as everyone responds differently to the disease and the treatment, and we don't want them to cut corners. And he scooted round the track and the carpark with Ben and Alfie yesterday as if nothing at all were wrong, so things look OK.

On the other hand Sue says there was hair on his pillow this morning, though I didn't see it. So things will soon stop "looking" OK. I had better get onto this sponsored hair-off thing,

Sue didn't take the news that there would be no holidays abroad for 3 years too well. Nor did I really. We kind of knew, but now it's spelled out. We already knew that insurance was a bit of a problem (duh!). So cottages and camping. At least the postcards will arrive quickly. But the travelling will take longer. Seriously: it only took 4 and a half hours door-to-door (not including sitting in airports) from here to the villa in Portugal, and 3 hours of that was on the plane; that's as long as it takes to get to the peaks (not including picnic and getting lost).

We have a wonderful book from the Clic-Sargent charity, who also gave us a substantial grant towards travel expenses (which we had defrayed by getting lots of lifts with visitors - thanks guys), lots of info about other financial and emotional support (very welcome) and a filofax (hmmm). The book is called "Joe has leukemia" (yes, bizarre but it isn't actually about Joe, just happens to have the name Joe in it) and it is for children. It takes you all the way through a child's diagnosis and treatment, and some of how it affects others too (the little sister paints herself with spots to get attention). I expect we'll pass it round once we've read it with Joe a few times. We have yet to really talk him through what's wrong with him beyond explaining the treatments he's being given: what he knows so far is that his blood isn't working properly and it's got bad stuff in it. It's very hard to explain to a child that he is ill when he never actually felt ill in the first place. He also doesn't and maybe can't yet understand the scale of his treatment: 3 years boggles my mind, and I know what the day after tomorrow is. Joe is in the here and now (except for knowing when the chef is in and when the pie shop opens: Monday).

Our companions on the ward have been a very mixed bunch. We have had Mohammed (asthma) who was only 6 months older than Joe but played Playstation all the time he was awake apart from when he would disappear from his bed to scare the nurses. Thomas (diabetes just diagnosed) ) who had nice but shell-shocked parents. Jasmine (soft tissue cancer) who is from Norwich, and has no hair and a tube in her nose but is full of life, and her mum who is full of chat and is very very Norwich. She talks like there's no tomoroow and says everything 3 times. She is lovely though and good company, as is her partner, who went round Acorn House shaking hands with anyone who was from Norwich. There have been several children whose names we never learned as they kept their beds curtained off. And Bryony who is a great big teenager on a lot of medication and in a lot of discomfort not least from sharing her room with 5-year-olds. Nikita who was on chemo for a brain tumour and has learning difficulties; her mum has 7 other children! Charlie (haemophilia A) had no idea about personal space and used to go through Joe's drawers and cupboards while his dad made vague and vain attempts (I am being generous here) to persuade him not to. Charlie never ate a single thing given to him on the ward, not even a chocolate spread sandwich: he ate Burger King, popcorn and sweets for a whole week. His dad sometimes wondered out loud why Charlie was so "active". We didn't. The rest of the time his dad just told us about Charlie's treatment, and Charlie's treatment and the treatment Charlie was having, and so on. Kayleigh had her 14th birthday in hospital with chemo pouring in through her chest line. She is lovely. We gave her a lot of chocolate and she let me use her laptop and talked to me about cannulas while I was wincing from Joe screaming in the treatment room. Her mum is lovely too, and is probably the only adult who knows my name and Sue's name. Mostly we all know each other as "Parent of X". They put up with Sam and Joe and even Imogen and Alfie. Among the parents we have seen or met is Mrs Rugrat (not her real name, but she has curly reddish black hair that sticks out in a sort of shelf) and numerous permanently smiling but also red-eyed and crumpled adults, even some parents who are barely adults themselves (how do you cope with that?). Child X had a broken wrist and dislocated shoulder and needed an operation. Her parents, grandparents and 3 siblings all came to sit with her in our pokey new room, where 3 people is easily a crowd, at 8 o'clock at night. And wondered why the lights were off. And why the tv went off at 9. And even, I suspect, what the nurse meant by "children's ward" when they eventually had to be told to SHUT UP.

Our ward companions have largely been short-stay, low-risk children, often overspill from other children's wards. Like I keep saying: where life is less comfortable because Joe is considered lower risk, life is better (because Joe is considered low risk). In the other rooms are the babies with enormous scars across their heads from tumour-operations, the teenagers crippled by chemo, the toddlers with lymphomas who try to run around attached to drips. And in the other rooms in Acorn House are the parents of children undergoing corrective spinal surgery, rehabilitation from less successful brain operations, ongoing programmes of brain surgery following road accidents and then the parents of the children just mentioned from our own ward. So when I say that our experience has been traumatic but humbling, you can see what I mean. It was initially humbling to feel how much love and support there is out there for Joe and ourselves. But now humble takes on a different meaning. It is hard to remember that Joe is ill. But now at times I am ashamed how well he is. Humble can be an unhealthy state of mind in some ways...

Yes. Still a bit low. Got to go and entertain Sam a bit.

Update 7

7 updates!

We must be getting near the end.

We have moved back to the children's ward's normal location and it's really cramped compared with upstairs. We have 4 beds in a bay/room, with a wall fold-down bed beside each one for parents to sleep on. It's really good, but when we were upstairs there were 4 beds in a room, and 2 were for children, 2 for adults. The rooms were bigger too. It was luxury! Downstairs we are "cosy" (cramped). But everything is much closer, the nurses are happier and all the stuff we need is right at hand. Also it's less of a walk to the pie shop and Acorn House. The move went fairly smoothly, though Joe had some new treatment that day, so it was a bit confusing for us.

There's a cold going round the staff on the ward so things take a long time. We are pretty low risk compared to others and so we have often had to wait quite a while. On Weds Joe waited 5 hours with anaesthetic cream on his hands waiting for a cannula to be put in so he could go on a drip for some anti-fungal meds. Poor Joe knows exactly what the cream means (that he's going to have needles stuck in him) and so it was 5 hours of dread. I suspect that since we had breakfast (2 eggs, 1 sausage, 1 hash brown, 1 cup milk!), school, painting & sticking, Wallace & Gromit DVD, reading, making a card game and lunch in the meantime, Joe might have thought it wasn't going to happen. But it did. It was his bravest and quietest needle to date! I was quite cross that he had had to wait in dread so long, but apart from that it worked out fine.

Hope the cannula works today. He's having his Vinc through it. Apparently the Vinc is such nasty stuff that they have to be 100% sure it goes into a vein and not into tissue, as it would be dangerous. So they have to have a cannula that bleeds back (ie you can get blood out through it, as well as put stuff in) or they put in a new one. Blimey. Poor kid's forearms and backs of hands are covered in bruises and blood dots. They had to use his foot the other day. I don't know how many of you have read Trainspotting, but it doesn't bear thinking about ...

Still no news about when he will be out. The Registrar yesterday said that 28 days was pretty standard, and we couldn't tell if she was just being cautious or guarded or what. I can't see him staying in beyond 28 days, but Sue is keen as mustard to get him out and home, and asks the doctors most days. I think they may have given us the best outcomes when they told us everything at the start, and we thought they would be giving us good news as the time went by. It looks like good news is when things carry on as first expected, without getting worse. This perhaps requires from us a bit of a shift in thinking! The Registrar kept going on about "Nowadays", which was a bit baffling as she was not old by anyone's standards. Maybe treatment has moved on a lot recently. Or maybe it was just flannel as she didn't really have the seniority to tell us.

The psychological sides to all this are interesting (though not fun). You never know exactly why someone says something in answer to a question: are they being evasive? do they know the answer? are they able to make that decision? is it a question noone can answer? do they want you to think the best? the worst?

Anyway, we are getting a bit jaded now. Running out of things to talk about from hospital. I read a sort of blog the other day about a girl with leukemia. It got very dull very quickly: "today was an up day. She went shopping. Today was a down day. She went home early..." Hope these news notes don't get so dull. On the other hand it's good that there's not too much to write about: "no news" is "good news". It's like being at the far end of the ward: it's remote, but it means things are going well.

Another time I'll tell you all about the people we've shared our bays with. Leukemia and illness in general do not pick and choose. You get all sorts, much as you'd expect. But it's still interesting to meet them all. And sometimes entertaining. And sometimes not. At all.

Theresa is round with Alfie now, and has offered to cook tonight (though she now claims that Sue counter-offered that I would cook, ... thanks Sue, but lets go for the free meal).

Update 6

Didn't have time to write when I was back on Friday. Got in late, just me and Sammy. Beans on toast and straight to bed for him. Gentle guitar night with friends for me (turned out a little less gentle and very late, but refreshed me all the same: thanks guys).

We've had Pampa (my father) over from Switzerland. Yes, I mentioned him before but failed to explain who he is. He did another night with Joe on Thursday but flew back to Switzerland this morning.

Friday was a big day for us. Joe had his Day 15 bone marrow sample and also another lumbar puncture. The reults Sue has already sent out. He has responded very well to treatment and he will continue to follow Regimen A, which is the lowest level of chemo (it is still chemo, and pretty heavy, but it involves the lowest risks of damage and the fewest side-effects). Other important outcomes of the day: his leukemia has none of the genetic markers that indicate complications or rare types, so the prognosis remains good. He has, it seems, got the simplest, most treatable form of the disease. However, what he has is cancer and the treatment involves toxic drugs, weekly hospital visits, a tube into his (I think) aorta for a year and further chemo over two years after that. Given the severity of the chemo regimens he might have been on with other forms of the disease, this is still a huge blessing.

Thursday, it turns out, was actually a more informative day. (On Friday nothing really changed: he remains on Regimen A and there are no complications). On Thursday we learned all about his blood counts and what they mean. His daily and now every-other-daily (yes there must be a better word for that) blood samples have been providing info about how many of different cells he has in his body. They count red blood cells, white blood cells, platelets and neutrophils (a type of white blood cell): the chemotherapy stops all of these being produced, as well as the leukemia cells. If he gets low on platelets or red blood cells he gets a transfusion, but if he gets low on neutrophils there's not much that can be done, except watch him closely, monitor his temperature for any sign of fever and keep a lot of antibiotics handy. At the moment, as Sue said, his neutrophils are down to 0.1. We had a leaflet which tells us what his counts should be, and what happens when they go below certain levels, but I haven't got it here. But 0.1 is way way below what it should be and makes him very vulnerable to infection, which takes hold extremely quickly. He also has to steer well clear of viral infections, especially measles and chicken pox. However, when he's at home he will be able to carry on pretty normally, even with low levels of blood cells. We'll just have to watch for signs of infection and act quickly. Scary, but positive.

The doctor said that he may be allowed to leave a few days earlier than the 28th day of treatment if his neutrophils recover quickly enough, since his response to treatment has been so good.

His hair may not fall out for 3 months, we're now told, since he is on Regimen A for the chemo. But we really don't know. We are still planning a mass head-shaving as soon as his hair starts to come out. Let us know if you want to be part of it. Also if you can get yourself sponsored, or even us sponsored for how many heads we can get shaved, let us know. We want to raise money for the Sick Children's Trust in particular, as they are providing the roof over our heads and the space to keep Sammy and Joe with their family all the time.

If you want to know more about acute lymphoblastic leukaemia, and blood cells and stuff try here:

http://www.cancerhelp.org.uk/help/menuforthistopic.asp?page=4604

It's part of the Cancer Research UK site.

This hasn't been a very chatty newsletter, but it contains most of what we have been finding out and talking about.

Oh and pies, fried breakfasts, instant noodles, smoked bavarian cheese, milk, gravy & mash, Burger King, bacon & egg sandwiches. We've talked quite a bit about those too, of course. He's starting to feel "dense" when I pick him up now. By dense I mean heavy!

Thanks again for all your messages

Good news

this is a rare note from sue. so hello,

good news, - just in case jez hasn't done this or you haven't heard. we had the big bone marrow test on friday to see if the leukaemia was becoming under control. the blood cells started off as 100% leukaemic(when we entered hospital), the aim was for them to be 25% by this friday. I'm very happy to say they were 5%, which is FANTASTIC!

To us this means he is now continuing to follow the least harsh form of chemotherapy. so a few less drugs being pumped into his body. practically it means that his outpatients appointments will mainly be at the n and n, not cambrige. so a 5 min drive as opposed to an hour and a half.

on when he leaves hospital - his blood results have to get a bit better. for those of you in the know the neutrophils in his blood (stuff that fights infection) have to reach one. they are currently 0.1. I am hoping/praying he manages to do this in a weeks time. (maybe slightly optomistic, but until 2 weeks ago - the glass was always half full for me.)

so once he can do this they will let him leave hospital. if we are lucky he will be home for sam's 3rd birthday. and we will all be celebrating.

fingers crossed.

love sue

ps thanks for all your cards, presents and good wishes - they have meant the world to me, even though I haven't replied to most of them.

Update 5

Back in Norwich again. Wednesday night. The family have gathered together for a huddle. Sammy is asleep, and Pampa, Sid, Rachael, Dave, Theresa and Simon are here. Curry on the way.

Joe had Pampa for company last night. Should say for breakfast really. Took him to the cleaners: Jaffle pie for dinner, chocolates, egg & bacon & sausage sarny for breakfast (which lasted him all morning, including the hour and a half he went back to bed to watch Star Wars, as he was "tired from breakfast": yeah, right), Jaffle pie for lunch. He had Uncle Dave on Sunday night (Burger King, midnight chocolate feast at bed time, egg & bacon roll for breakfast), and he's got Pete tonight, with no parental supervision (so no bath, lots of junk food). Joe knows which side his bread is buttered, and it's both sides and round the crust too.

Thanks for the replies to e-mails. We can't really always reply, but it means a lot to know everyone's thinking about us.

Further info on the night with Uncle Dave. Choclates were bought for midnight feast. Soon Joe asked what time it was: about 7. "I won't be awake at midnight, will I? I know. Let's pull the curtains round and turn down the lights and have the feast now!" He then tasted a couple of the mini quality street box, and decided he didn't like them. "I think the shops are still open downstairs, shall we go and get something different for the feast?" He says.

Have had a few beers now. Lovely night with family. Lots of plastic freeze boxes from the take away, to put meals in and freeze.

We're struggling a bit now to fit in all the offers of overnights, days out, visits and so on! We are so lucky to have so much support. The hospital are getting confused now as to who we are, as they have seen so many people come and stay or visit. Most children just have their parents there. Or just one parent. Joe has both, and his brother, and then when we're not there he's had 3 grandparents, an uncle and a family friend. And they say he's such fun that the rest of the family want turns now, too. So we're also lucky to have a lovely son (two of them).

Sammy went swimming and singing today. He liked his day of normality and so did Sue, so we are planning for them to spend every Wednesday here in Norwich.

Oh and Jack visited yesterday and, it goes without saying, beat us all at Monopoly. At least he until he lost interest and went off to play something else. Then Joe won. But he still hasn't beaten Jack.

However, Monopoly stops him talking about food. And nothing else does. He talks about it all the time. He is developing an interest in telling the time (so he can think about when his next meal is) and in adding money (so he can buy food). I think we'll get some menus and see if we can get him reading too. His Dextramethazone (?) has the side-effect of stimulating appetite and weight-gain (to which I can now say: No kidding).

Enough now. I'm rambling a bit. All still bright and cheerful in Norwich, as you can see. No photos this time though. Will have to get some pictures of Joe eating. Shouldn't be too hard: he spends a lot of time doing it (and the rest of the time talking about it).

Update 4

Back in Norwich again. Sunday night.

I actually have news of my own to report: I came back to Norwich early today, "on the train" (1), to watch City "play" (2) Burnley.

(1) The train I intended to catch didn't run, and then I got on the wrong late one, and so missed the entire first half. I don't need to tell you, as "everyone" apparently knows (according to the railway, who therefore feel no need to publicise the fact) that there are engineering works on the line from Ely to Attleborough, and therefore a bus has "replaced" the service (it takes a full hour and a quarter longer, ie double the time, to make the same journey).

(2) Norwich lost 4-1 at home, following a mid-week ultimatum from the board that the manager had 2 matches to turn things around. One or two players (actually at least 8) may have played below their best in an effort to help the board come to a decision. So "play" is perhaps generous as a verb, given the circumstances.

But I'm not bitter.

Joe continues more or less well. The drugs are not making him ill. And he takes a pretty big tray of them (see photo). He is just starting to question the whole thing. It took an hour and every piece of cajoling, manipulating, wheedling, threatening and pleading I had to get him to take his meds last night. And in truth he only did it when I got up to take the meds back to the nurse and get Mummy to have a go. This morning he said very sweetly that he would take them all properly, straight away, so some of my manipulating worked in the longer term. One of the meds is horrible, one quite yukky, one Ok and two quite nice, and the really really foul one he takes as a tablet (luckily he can manage tablets), but he wouldn't have any of them at all. And the thing that freaks him out most of all? Antiseptic mouthwash! We have swapped the hospital's strong one for mild citrus listerine, but you'd still think it was sulphuric acid the way he carries on. But he has to have it as the mouth is a prime site for infection while his immune system is weakened.

Joe learned his meds quicker than me. We have wine gums for him to eat after the really horrible meds. He proceeded to con extra wine gums by pulling distraught faces after each med. Unfortunately he couldn't help but crow about how cleverly he'd tricked me, and so I now have notes on the meds, as listed above.

He has had visits from George (and Tom), Jack (and all Boyces), Grace & Katie (and Peacocks) since we last wrote. There has been more scooting and shouting of course. Also he has Burger King night on Saturdays (there is a Burger King in the hospital concourse downstairs from the ward, along with pizza shop, pie bar, jacket potato bar, cafe, sock shop, 2 convenience stores, bank, solicitors, travel agents, mortgage firm, Body Shop, gift shop, daily changing market stall, dry-cleaners). The doctors on the ward say that all eating is healthy eating: when you see some of the poor little slips of children walking around with feed-tubes into their noses you can see what they mean. We are so glad Joe has a good appetite. He has just wangled an extra Burger King from Uncle Dave who is sleeping over with him while we are here in Norwich for the night. He's no fool.

He is addicted to Junior Monopoly and meals at the moment. One of his meds is a steroid that has the side effect of stimulating appetite and weight gain. No idea about the monopoly, especially as he doesn't usually win (at least not when Jack Boyce is playing). He also plays pool on the little table they have for teenagers. And his other pastimes remain rude songs, winding up his brother and watching Tom and Jerry or Star Wars DVDs. Have tried him on the PlayStation, but he just isn't really interested. Bit of a blow as it's my only excuse.

Sue is sleeping better now. Still exhausted most of the time. We are eating well, thanks to all our supporters (bolognese: Chris, curry: Amy, lasagne: Abi, stew: Peacocks, coronation chicken: Boyces). Now that we are in the swiing of things, it's much easier.

Not much more now. Pete has come round. Sue is doing girly stuff with Penny and Angela.