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.
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