Update 3

We are just back in Norwich for a night. Grandparents are with Joe in Cambridge tonight.

Ben visited again yesterday, and was amazed by the Space Bath (it goes up and down, see photos). A lot of count downs and blast offs followed. Also they scooted round the site's cyclepaths like, well, cyclepaths. Joe got tired quite quickly, but Ben made sure he could keep up.

Now Joe is off the drip, he is weeing a bit less at night, so we're having better sleeps. And I mean we, not just Joe.

Sue is exhausted. Sammy is relaxing a bit: he has been with us in Cambridge for a couple of days and it's working out well. It's so nice to have the two boys squabbling in the bath again! We're going to try to stay together all the time, so we are relying on a few close relatives and friends to sleep over with Joe while we come back together to Norwich to catch up (thanks Uncle Dave, Grandma & Grandad, Pampa, Pete).

Tom's home-cooked meals are keeping us well. He is excelling himself: rice-pudding pork, chicken stew, moroccan lamb and tomorrow he's bringing pasta with whore's sauce (yes, whore's). Sarah's soup was delicious, and we're having Mike's curry for dinner tonight. Thank you everyone!

Joe had a slow day today. He played pool this morning. Then went to school (yes, school). But he then had blood tests, which he has every day. His canular in the back of his hand isn't letting any blood out now. They've put another in his arm, but it won't work either. We had a harrowing time getting blood samples today and yesterday: a failed attempt and a not-very-successful one both days. He goes under general anaesthetic on Friday for his next bone marrow sample, and a lumbar puncture (apparently it's nowhere near as bad for children as it is for adults), and so they may put in one or two bigger gauge canulars while he's under. I hope they do. Joe is totally freaked out by the needles, even though he can barely feel them with anaesthetic cream.

Anyway. He had a session with the music therapist as well, and he loved it. She was very impressed by his careful and expressive playing and, I have to say, so was I. No bashing everything for him. When we left he was feeling sorry for himself and watching The Empire Strikes Back, but showing signs of perking up.

He loved the get well soon cards from his class and says thank you to everyone.

We have received the medium term plans from Joe's school, so we will pass them on to the teachers tomorrow. Many thanks for the photos. They will go on the wall and he can tell everyone all about the people in his class (though he has told them a lot already!).

I am attaching a couple of photos from hospital. We haven't felt like taking many, and these may not be 100% decent, but they're close! As you can see, Joe really is OK at the moment.

The second Joe update was called Jeremy

This is a generic update on how things are going, as many many people want to know and we just can't write individually. Do feel free to share it with anyone who wants to know. More will follow, and can be directed to anyone you think we have missed out. Just let us know. Sorry if anything in the note does not seem appropriate to you.

We are signed off work by our GP until half term.

Not completely off though! Poor Joe can't choose his parents: we've been into his school to see the head and ask for MTP so he can keep up. So we're keeping a hand in. There are teachers at the hospital actually.

Joe is still well. He was allowed off his fluids drip yesterday for 3 hours to come out and have lunch with us and Sammy and Sue's parents at the Sick Children's Trust house (Acorn House). We had his scooter with us and he careered around all over the place in the sun. It was lovely. He still seems very well, and we are quietly wondering what on earth he would have been like if he didn't have it (is it wrong to be a bit relieved he has it!).

One of Joe's favourite things is standing on the base of his drip stand and being wheeled around the ward and out into the concourse. It provides a lot of laughs for bystanders. He likes to scoot and see how far he can glide on it too. He also likes singing rude songs at the top of his voice at the same time. Like I said, in a way it's lucky he's ill!

He is also plundering us as he starts to realise what he can extort (sweets, balloons, sticky drinks, toys, Burger King), so brain function not in the least impaired (except when we want him to read to us).

His grandparents stayed over last night and we both came back with Sammy. We've organised a rota of visits for us and for him, and for who will be sleeping over on the ward. Sue and I are trying out spending several days at a time down there, with Sammy too. Acorn House is superb, with cooking facilities, toys and games, sofas, baths and showers, and 3 beds in the room, so we should be able to manage. Have been worried about Sammy getting anxious about separation, and this should help. Otherwise he stays with my sister round the corner in Norwich, merging with her family (4, 6 and 8 year-olds who he spends huge amounts of time with normally) pretty seamlessly, which is also good.

So far so good.

Do share news with everyone

The 1st Joe update was just called "Joe"

Many thanks to everyone for all your kind words, thoughts, encouragement and sympathy.

The ward Joe is on is C2, Paediatric Oncology. It has a charitable fund. Also helping us are Clic-Sargent (which provides social-work, advice and financial support), and The Sick Children's Trust (which provides Acorn House, with a family room for us round the corner from the ward, with cooking, play, relaxing and sleeping facilities: an absolute godsend as we can in theory stay there with Sammy and even entertain visitors and Joe). The ward does not allow flowers or potted plants, to help control infection. Flower money can be very usefully deployed by being sent to one the charities above. Family are buying bits and pieces, entertainments and treats! Please relay all of this to everyone at school, including the parents.

Joe's condition was diagnosed when lumps on his neck from inflamed lymph glands did not go down. Blood tests eventually showed blasts (leukemic white blood cells), and we were booked into Adenbrooke's the same day. He was at school, I was at school ! We just had to up sticks and go. He has had bone marrow samples taken under general anaesthetic, and will have this each week for 4 weeks. And then we don't know. He has chemotherapy but children are much more resilient to this and it should not make him more ill, except when he has low blood counts and feels tired and weak. Joe's leukemia is ALL: acute lymphoblastic leukemia. It is the most common form of childhood leukemia, and luckily the most treatable. The treatment regime for boys is 4 weeks intensive in hospital, then at least one day a week in hospital for six months-ish, then less often for 2 1/2 years, about 3 years in total. Good prognosis compared to other leukemias, about 80% success rate perhaps. So fingers crossed. Luckily lots of the treatment can be at N & N after initial 4 weeks. But lots to find out along the way and things can change.

Very upset and dazed, but Joe is wonderful. He is genuinely well, apart from getting a little tired as he has a low red blood count, so it's a bit like running around at altitude at the moment. He isn't complaining, but is getting a bit of cabin fever as his saline drip keeps him indoors, but he will get breaks, and hopefully quite big ones. The ward is very well set up for children: food on demand, loads of toys, games, entertainment (DVDs, videos, play station), play leaders.

Thanks to everyone for all their messages of support. We really appreciate them. It is lovely to know how highly thought of Joe and the family are. Please do not be offended if offers of help are not taken up. We have a very strong and close network of friends and family nearby. We are extremely grateful and rather humbled by the enormous sympathy and encouragement.