Sunday, 9 February 2014

Week 3 Diary Luke Aemia

Sunday 9th Feb.

So today was a fairly quiet day. We started on some potassium supplement, since the diuretics tend to cause potassium loss. This supplement is quite strong tasting and she doesn't enjoy it - even more than she doesn't enjoy the diuretic and the Bactrim, which will put her off Barney Banana icy poles for life. The upside is that she's getting better at swallowing, since rolling it around in her mouth doesn't get rid of it and swallowing means it's gone, so there's hope for drinking out of a cup some time this year!

A new doctor came along and met Jacinta right when she was building up to a big air kiss - which he got and felt very pleased! We got to hang out with Daddy today, which is a rare thing at the moment and was very nice!

Overnight her temp was low - 34.8ish and they got it up to 35.5, which is OK. Today she was more like 36, 36.2, which is very good! Sometimes though I think that if she's a bit sweaty she feels colder on her skin than she actually is, so measures low. That's my theory. Who knows.

As I got Jacinta dressed this morning, I looked at her bed and noticed it had quite a lot of hair on it.
"Here we go….", I thought. Then I looked closer. Most of the hair on it was mine!! Looks like I'm growing natural layers to complement my natural fringe!

This evening I got everything organised, timed and good. I had her asleep by 7! Woohoo!
I had grand plans to sneak out and drive my car back home or do some washing and was catching up with things like writing this very diary entry…..when the beeping machines went off. They do this often, she stirs but goes back to sleep. The nurse rushed in and turned them off and said, in her best big voice, "gee, it's loud, isn't it?". And she was up. 40 minutes later she was back down.
Ah well, another night.

Monday 10th Feb

So today we had the last of the disgusting potassium (its official name) and we're just having the yucky lasix and the new unknown spironolactone. The antibiotics are also easing off and we're on the last one. the cultures are all coming back negative, which is good.

The doctors are spending about 30 seconds in the room, extolling her virtues and then leaving pretty much. We're still neutropaenic, which is when the neutrophils are at virtually useless or nonexistent levels. Neutrophils are certain white blood cells which are the front line defence against illness. The levels of neutrophils tend to mirror the levels of white blood cells. Hers are at 0. They've been around there for the last few days. I'm not sure how long they hang around for, but someone mentioned a few weeks ago that around day 22-25 post chemo we'd be looking at being around the .25 mark. We're at day 18 currently.

I spoke to the French nurse who was looking after us today. I've had a French nurse and a Belgian nurse and I liked both their styles. Very practical. This nurse could see Jacinta was fine so wasn't worried when the blood pressure cuff wasn't doing its job. I prefer this sort to the sort that freaks out at a funny reading and thinks only of what the machine says and forgets to observe the child!

This evening I made it home with the car, mostly because when I told her I was going out she said she wouldn't go in that room for anything, even though she had hoped to do some obs(ervations). Everything was cancelled while I was out of the room. She stayed asleep. I've been back an hour and she's still asleep!

So this cool nurse asked me what our future plan was. I said we appeared to be receiving information on a 'need to know' basis and had no idea what was happening next. I've heard that we'll go home for a day or so after each chemo, that we'll go home after some of them, maybe, and that we'll be here for the entire 6 months. She said that 10 years ago, there was no leaving the hospital at all, but that modern thinking was to let us out a little bit. It comes down to who your doctor is and what they think, she says. That's encouraging.

Another thing she said is that she was surprised that we're not being looked after in the transplant area. The transplant area is a sterile area with swipe cards and double doors, gowns and masks. No children between the ages of 1-16 years are allowed in. Only parents and one or two other designated people are allowed in ever. She said that normally children with Trisomy 21 and AML are looked after in that area. She thinks we're not in there because we have small children who need to visit. She also said not to be surprised if we do wind up in there at some point. Fingers X we don't!

So we're hanging out and crossing fingers we might be looking at a day at home in the next couple of weeks….

Tuesday 11th Feb

I asked about that today. The doctor seems to think that we may get out for a couple of days 'for sanity's sake' at the end of the cycle - if she stays healthy. According to the doctor, the first round is the most intensive and kids tend to struggle most with the first round, then the second and third are only two drugs and much easier to take. She was quite amused as she told me this in front of our happy-as-larry daughter who has had a bit of a fever, some fluid retention and nothing much else to speak of. Clearly she's in better shape than most. Yay for Jacinta!

She also clarified things a bit on the timeline. We can expect to be neutropaenic for a couple of weeks. This will mean another week at least I think, maybe two. Then we can think about sleeping in our own beds for a night. Then we most likely get an infection, come straight in and start chemo again once our neutrophils are .75. That's what I've heard.

The good news is that Jacinta's platelets and haemoglobin are holding steady without transfusion, which is good, and she had a smudge more neutrophils today so we'll watch with great interest to see what those do.

Today we hung out. We're hooked in with the speech pathologist, occupational therapist and physio - it's kind of hard to avoid them without looking like a complete idiot. I'm happy enough with the OT and speechy so far, but I really wish the physio didn't act so much like a physio. She was grumpy after about five minutes of being constantly interrupted and manoeuvred and manipulated. I would be too. Oh, what I'd give to be able to fit my crawling track in the door. What befuddles me is that she seems to be trying to correct things that would correct themselves if Jacinta was crawling. Her feet are still splayed, they need to be if she's to commando crawl, then as she cross-pattern crawls (creeps) she'll straighten them.

The physio is trying to show her to put weight through her legs and show her the feeling of having them straight and weight bearing. It just seems so complicated when we could just get her on the floor and moving with the crawling track!! I'm inclining the bed at times so she can go down on her tummy a whole metre. Have to make do with what we've got! It really does feel silly to be doing all these little sub-actions when we could work on the big ones - and achieve brain growth across several areas incl eyesight. There is also emphasis on building her shoulder muscles so she can hold herself, which is valid too, but commando crawling works the shoulders, thighs and midsection. It's a brilliant workout which amazingly gets the body totally ready for the next stage.

Anyway, we'll persist. As long as she's in good spirits we have the chance to work at it, so we will. I'm keen to start some card things too, such as the maths and reading cards. Might as well since we're twiddling our thumbs a bit. That'll be plenty to be going on with for now!

Wed 12th Feb

I think I need to start by mentioning that when it takes me more than 2 hours to get Jacinta to sleep for one reason or another it is VERY IRRITATING!!!

The good old 'talking nurse' has reared its head again, a different nurse this time, but in addition she's just generally 'not sleepy', as you would expect of a 13-month old for a reason known only to them.

Anyway, all good news today. No changes particularly. Off the lasix/frusemide unless we're having transfusions, which we're not because Jacinta's haemoglobin and platelets levels are holding and her white cells are coming up. The doctors said today it's a good sign because if she's making white cells and platelets then her bone marrow's waking up. Yay! Things are going along as they should.

They also intimated that if Jacinta keeps acting like there's nothing wrong with her, she'd be allowed out for a bit in the next couple of weeks.

Now, being allowed out of hospital when your child seems perfectly fine lends itself to visions of throwing yourself into life as it should be and catching up with everyone you've missed over the last few weeks…..and that's pretty much exactly what it's not!

Because her neutrophils are still going to be less than 1.0 at this point, she's still quite prone to infection but there's a window of time to get it treated before it becomes dire. They let you out for sanity's sake, knowing that you won't die if you are 30 mins from the building.

As it is though, she still shouldn't be playing in the dirt and can't go to the beach or the swimming pool, can't be around anyone who's sick or who's been around anyone who's sick. Could still catch anything from her sisters or other children.

This basically means no trips to school pickup or dropoff or kinder pickup or drop off. No visitors really, no visiting really. Basically it's being hermits in the house and getting out while she's asleep maybe. Still, it's better than being stuck away from the rest of the family, with Skype the best form of communication available (and you can't hug on Skype).

Then, once you're home, you'll most likely be back in hospital again in a day or two with an infection, so you make hay while the sun shines and cross fingers that it's more than 24 hours!

So the Consultant (who's the doctor overseeing everything) came past today and was slightly incredulously impressed that Jacinta's had a tiny fever, a small bit of diarrhoea and some retained fluid. Especially since they were quite concerned (it turns out) about the fluid retention and heart failure stuff earlier on.  Jacinta's kicking goals again, and the footy season hasn't even started!

So for reasons best known to Jacinta she's still up, since me trying to help her get to sleep amounted to little more than nothing. Right now she's practising crawling, so I've declined the bed to give her a bit of help. The other way she kept going backwards and getting stuck with her feet through the bars.

I wonder what time we'll get to bed then……nite!

Thurs 13th Feb

It was 10pm.

I decided not to be cranky at the nurses anymore since really it's just a symptom of something I didn't handle right in the first place.

I just told the no.1 noisy culprit that Jacinta's a really light sleeper and gave her the opportunity to not wake her, which she didn't really have last time. I just expected her to know - and in the hospital the one thing you should not expect is for nurses to know! (No reflection on nurses, just info only travels so far and they're not mind readers. In their defence, whenever I query, they go back and find out for sure.)

Anyway, today was a good day. I didn't hear back on the neutrophils in the end, but all the counts are doing the right things and Jacinta is still acting healthy.

We had little miss middlest join us in the hospital today and got to go to kinder session with one of the loveliest teachers you'll ever meet, and had the music therapist drop in for a singalong - one of the loveliest musicians you'll ever meet. This hospital is so very appropriate for siblings as well as patients. I would think that most of the facilities here - the meerkats enclosure, the mini aquarium, the movie cinema, the starlight express activities room, the huge touch screen games console - would be accessed by the siblings of patients much more than by the patients themselves, who are mostly too ill to come downstairs. It's entirely possible to spend a whole day here and not get bored. We still had things to do when it was home time.

She's definitely losing hair now. It's not completely noticeable yet, except when you look at her clothes and see hair all over them.

Here she is…

A little bit thinner all round and she's lost her fringe. Still the odd curl here and there.
Still, she's chipper.

On the slimmer side today. It's amazing how fluid retention and release can affect your body shape in a matter of hours.

So we're waiting….still touching wood (the doctor actually did) that we skip any more fevers etc. and they let us out for a minute next week.

Big fingers X!!!

Friday 14th Feb

Today we pretty much hung out and did not much!

It was Somebody Loves You Day in here today and there were flashing heart headbands, flashing love heart pendants and love heart chocolates. I was just about to receive visitors when I was offered a manicure so I went down for the manicure and my visitors got one too.

Miss J's platelets are rocking the treatment, highest ever levels since we arrived so something's working.
Her haemoglobin's hovering around the level of a transfusion. They'll revisit tomorrow.

That's all I can think of!

Sat 15th Feb

Today we had a bit of a temp coming and going. It got to 37.7 at one point then went down again. I haven't seen the neutrophils yet but I think they're yet to move. The platelets are the first sign of the marrow waking up and the white cells come after.

Not much to report again today. The haemoglobin was one tiny point lower which in the scheme of things is actually good. If you're making none you drop a bit but if you barely drop you must be making some at least. They'll wait for the cells to recover rather than transfusing at this point.

Yesterday I forgot to mention that I spoke to the nurse co-ordinator about the next round of treatment. It seems we may start getting a little bit of time off here and there, which would be nice, although probably a bit disruptive on the siblings. I think it's better to be home a little than not at all though.

Miss J's ready for bed so I'm off!

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