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.