Sunday, 6 April 2014

Diary Luke Aemia Week 11

Sun 6th April

Daylight savings ended overnight which didn't really affect things here (since we have no particular schedule) apart from the clock showing the wrong time. Having to calculate daylight savings discrepancies minus time different to the UK was interesting.

So Miss Jacinta was tired today. The morning doctor thought she looked a little pale. I didn't really see it, but it turned out her previous haemoglobin level was 80 (around the borderline for a transfusion depending on which hospital and which country you're in).  I suspect he Dr knew that before he mentioned it. Her blood counts were done again and they were about 65. Transfusion time!

We finished half the chemo just after lunch and the other half just after dinner. The flushes take a couple of hours to go through and the blood was running by the time the second chemo finished. It all finished about 10pm. She doesn't like blood transfusions and it seems she's not the only one. The mum next door had one last night and was telling me how her son gets after blood - just the same. Climbing the walls and really ratty. Jacinta asks me to stop it, she pulls on her line and looks at me in just that way.

We get through it though. So tomorrow I'm hoping they will let us downstairs a bit seeing her neutrophils should still be at a reasonable level. Anyone else they'd probably send home for a few days, but I think with AML and a heart condition we're just in, no discussion.

I guess we'll see!

Monday 7th April

So, applying the rule of 'don't ask, don't get', I decided I'd try for permission to visit the zoo. The zoo is about 15 mins walk from the hospital and most enclosures are outdoors so it's a viable option, and I know that inpatients have been allowed to go there from time to time.

Today were were completely unattached and free to roam. I asked how her neutrophils were going and asked if there was any chance they might see their way to maybe letting us go…to the zoo….

….and they weren't sure. They said her neutrophils were at .9 still, which is fine for going downstairs, but that the zoo was a different kettle of fish, quite literally. In the end the doctor said we could go as long as we were sensible (avoid children, enclosed spaces, crowded areas, sick people, touching animals…..) and as long as we were back by 1pm for when the big Dr in charge came round. Yay! We got out of there as soon as we could, before anyone could change their mind.

We weren't gone that long really, since I wanted to walk and I got a bit tired after being out walking for an hour so we had a look at a couple of things and walked back. Being members has its benefits, since you can come and go as you please without feeling like you're wasting your admission fee.

We came back and Miss Jacinta had a nice big lunch. She ate quite a bit today, actually. And she did get a tiny nap and a sleep later, about 4pm. We took the opportunity to wander downstairs again after dinner. Making hay while the sun shines. (Coz when it goes back in, we're locked up again!)

In the end she was very tired to went off to sleep about 7.30. All round, a nice day. Touch wood we'll get a few more of those before fever sets in - which it won't, of course! (That's what I keep telling the Drs anyway…..)

Tuesday 8th April

Today was another good day!  We got up to the Heartkids morning tea. Both of us! I don't think Jacinta's been in over a year. Heartkids is a charity which supports the families of children with heart defects. We became members last year when she was in for her heart operation.

We got downstairs and hung out in the fresh air before the rain set in. We wandered here and there. It was nice. It was particularly nice to pop down at the end of the day to pick up a couple of things. Normally I'm rushing to get Jacinta in bed before the shops shut.

Jacinta has a new playmate in here. He has Trisomy 21 also and is on the same treatment protocol, a little behind us. His Mum had a friend visiting today whose daughter also has Trisomy 21, but is a little bit older than Jacinta and has a problem with her neck.

We all sat down to play on the mat on the floor.  We spent a good hour talking about lots of natural therapies and I gave Maria's details to this mum also, and Kristen's and the name of a book on glyconutrients! It's strange being the one handing out the details for the solutions and having other people so relieved to have found real solutions to their child's condition. It's satisfying to be able to help!

So yes, today was a good day. Being able to leave the ward meant that when Jacinta woke after bedtime I could bring her out to the lounge to sing with my quartet. A MET call (Medical Emergency Team) happened almost outside the window. One of the parents in the next ward was taken ill. I'd just been wondering today what would happen if there was a MET call for a grown-up, or if they even did MET calls for grownups. Turns out they do. I don't know how much treatment she could get, but she didn't leave within the next hour so she must have been having something.

Missy went off finally and I popped her back into her room. Pretty cruisey really.

Wed 9th April

Yet another easy day. I think we had days like this in round one, but I didn't really appreciate them. After being confined to the same hospital floor for weeks, grasping every tiny opportunity to go downstairs and being severely grumpy when they were thwarted, being free to come and go as we please is lovely. We went out in the rain today, just to feel what rain feels like. We don't get much chance!

Today I asked the Fellow about her counts (I just left the o out of that word - won't do that again), which are at 2.0. The Fellow said if they were ok I could take Missy to the airport to pick up her Daddy and siblings!! (2.0 is very ok.) So, they're in the air right now and I'm assuming they won't check this blog post before 5am when they, surprise!

I suspect Miss J was excited - or reacting to the spaghetti which she had today. She didn't go to sleep very easily at all. I was trying to put her down early so she'd have enough sleep for the early start, but she just couldn't settle. She was tired, but jumpy.

I ordered spaghetti for her lunch today since she had it a couple of days ago and ate loads. She did again today. She's meant to be less affected by wheat than the rest of us, according to muscle testing. Still, it's her eating it straight rather than it coming via breastmilk. It did seem she got away with it last time. Maybe it's something else. There's nothing else she had today that could be the issue though.

Anyway, she came along to the parents' dinner that Challenge (a cancer-related charity) put on once a month. Margate catering provide their services and Andrew puts on a beautiful meal. So delicious. It's a nice opportunity to chin-wag with the other parents on a chair, rather than standing around in the tiny kitchen.

Today I also went through and wrote up every little thing that we record on the beads when we do Our Beaded Journey.  This is a worldwide thing I believe. I think it was a Canadian initiative. You have a big long string and for each type of event there's a particular type of bead. At the end of a couple of years of treatment some of these strings of beads are several metres. I'm doing Jacinta's because I think it will be a good way for her to measure in her later childhood exactly what she experienced during this phase of her life. I do think it would be good if we had a birth to leukaemia. There'd be at least a foot's worth of beads in that too.

Where do you stop though? Surely my other girls have some beadable experiences in their lives also.

Anyway, hopefully we can get that started soon. We're nearly halfway through our treatment!

Bed now, early start! Yay!

Thurs 10th - Sat 12th Summary.

Well, there's not much to report medically. She's had high neutrophil counts and has been allowed to come and go as much as she likes. As of Saturday she was still at 1.3, which is well over the .5 arbitrary neutropaenia number. (Neutropaenia is where you don't have enough little soldiers to fight off infections.)

So we went to the airport, which was lovely, and I wound up with two voluntarily sleeping daughters by 12.30pm. I attempted to wake them about 2.30, which was a bad, bad, bad idea. After the sort of behaviour you'd expect from a child being forced to undergo a painful procedure they both took themselves back to bed within 5 minutes and slept til 7pm. I let them go since I hadn't heard from my husband, whose power nap at our base camp 10 minutes away wound up taking til 5pm and I figured it would be kinder to him to have them all on the same time zone.

After a repeat performance on Saturday, we woke them at 6pm and went out for the night.  These last few days had very little to do with Jacinta, and more to do with her family catching up on sleep!

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