Monday, 14 April 2014

Week 12 Diary Luke Aemia

Sunday 13th April

So today was a bit better in terms of sleeping. There were no bloods taken, since they figured there was no need. My husband had to do work so I took the girls out to the zoo for the afternoon. It was fun and they got very tired, although they were still very good.

Jacinta only got to sleep about 4pm in the end, because every time she was nearly asleep something woke her. Maria came again today and on top of the usual cancer things did kidney and bladder. Her wee had been pink in the morning and showed leukocytes and I didn't think to mention it to Maria but true to form, she seems to have just known and treated her for it anyway. (Most likely cause of leukocytes in the wee is bladder infection.)

Back on Saturday the head of Oncology came past and said that they might change her treatment approach in terms of whether we're in or out. It must not have escaped her notice that we've spent the last week in hospital doing nothing much. She said that we'd be allowed to go home more and not worry so much about her getting sick, since she's been handling it all so well.

Today I clarified that with the Fellow, who said that the timeframe she was talking about was within courses. Normally we just stay in for the whole month and have a break between rounds if she's healthy. She said that if we'd known we could have gone home this round, but that it's too late this round and we'll have to wait til next time. Oh well, the upside is it means this is most likely the last long stay we'll have to do and once she's gone down and come back up we'll be doing short stays, more like a week or two at the most. Much better!!

Mon 14th April

There's a helicopter being noisy above me at the moment. This is the fourth or fifth in two days that I've noticed. Normally I don't notice them much at all. I don't know if it's really busy up there or if I've just started noticing them all. The security guard I spoke to a couple of weeks ago mentioned that there were a couple on average every day. I'm not sure which class of patient comes in by helicopter. Obviously acutely ill from far away, but I'm not sure exactly how acutely ill or how far away. Actually I recall a story of someone I'm acquainted with being brought in here by chopper after a boating accident that pretty much took his leg off. I guess that's one.

Anyway, this is school holidays and I've got all three girls in here, at my request. I see so little of my eldest, and having had them away for the last two weeks, I think we need time to get properly sick of each other!

My husband needs to get a lot of work and study done this week and we were working out how to accomplish all this. I decided to utilise the Ronald McDonald House. I found out about this when Jacinta had her heart done - on the day she moved from Intensive Care to the ward, which meant I didn't need the room they found for me in the end. (You can't stay over in intensive care, so for a breastfeeding mum it's much easier to be nearby than waste hours on travel and be travelling in the dark, late at night etc.)

I had thought it was only for interstate or international visitors etc but I found out last time that locals can stay there if they have the need. I think priority goes to those who are in the above category but they have enough rooms to help out those who are from here too. So I've got them all tucked away in there for the night, which means my husband can do work from there if he needs and drop them here early and come and go however he needs to. We'll only be there a couple of nights, but it's so good to have as a backup.

There was a moment this afternoon when I asked what Jacinta'a counts were - doing the right thing by the doctors if we were going to leave the hospital. The nurse mused on this, reasoning that if she was still at 0.....
I said, "what? was she at 0??" and she had a look on the computer.
"No, she's at 2.2!", she said.
"Really???" I queried. It's a bit early for her to be going up again.
"Oh, no, she's at .43"
"That means she's neutropaenic then. But we've been sent home at .3 before so it's probably fine. We'll just go."
"No wait on, I'll check......"

I thought I'd done my dash and I was not going to make it to "Ronald Mac"(as the peeps in the know call it) to get that room set up after all.

The music therapist came in, and did one of the noisiest music therapy sessions on record, featuring not one, but two vocal solos by my middlest. (Incy Wincy Spider and Let It Go - from Frozen) The boy from the next room found it all a bit much when all the percussion instruments were going at once in the tiny room and had to go for a sleep. It was crazy! I think the music therapist secretly loved it.

 In the end we had the thumbs up - literally, there was singing going on, to go to Ronald Mac. I don't know how long this will last though. I suspect this might have been our last day.

I guess we'll see! (The sooner we get neutropaenia, the sooner we come back up, the sooner we get out of here!!!)

Tues 15th April

Well! That was interesting. Going on yesterday's numbers we had ok to roam upstairs to the Heartkids (the charity that supports the families of children with heart conditions) morning tea. My eldest and middlest scored a trip downstairs to the Starlight Express Room and playground with an adult who was willing to take them. (Ok, I would have taken them eventually…) We had loose plans to go to the zoo again today but the afternoon seemed to look after itself.

I had just managed to get Miss J asleep about 2pm and the blood nurse arrived within half an hour to take a finger prick test. We didn't manage to stay asleep for it this time! Not only were we not impressed but we also got our bandaid off, which has quite spectacular results when your platelets are low. Second bandaid came right off. Third bandaid consisted of a bandaid around it, a bandaid over the top and elastoplast around the whole thing to keep it in place.

My very kind friend who owns her own cafe and is a pastry chef brought us in some special treats and we had visitors who were kindly willing to help us sample them. Just after this late-ish afternoon tea, the doctor found me and asked if I'd heard the final blood results. I hadn't. He said her neutrophils were at 1.0. I asked him to repeat that. He said they were at 1.0. I asked if they had gone up. He said they had. I asked if this was ok. He said it was. I asked if this meant that the treatment was working if they hadn't hit zero. He said they weren't plummeting but going down and then up and that was ok. I asked if theoretically they never made it to zero and came back up again if that was ok. He said that since everything else was crashing - including white cells, including lymphocytes in particular - it was totally fine for her neutrophils to stay up.

He said that if they stayed up we might get to go home…..!!!

He gave me a printout and I saw that the platelets had only dropped by a couple of points, which means she's making platelets, when she had less than 10 the other day. I'm not completely sure, but this could mean we're skipping neutropaenia this round. Tomorrow will tell I guess. Fingers X!

Wed 16th April

And tomorrow says……yes!

Well, we're not sure if we're skipping neutropaenia for absolutely certain, but the platelets are improving slightly and the neutrophils are doing a little jig on the spot so we're guessing things are moving in the right direction. (And it's nearly Easter and we want to clear the ward for the long weekend and, hey it might be a cold coming on, but if she's got counts it's all good so hey, go home.)

It is interesting actually to note the difference in attitude when they are trying to get you out of the ward. In their defence it's as much for our sake as any administrative reasons that they would want us to go, but where a couple of weeks ago we were locked down and not moving for love nor money and we were watching any sign of an illness like a hawk, this time it's seemingly no biggie.

I'm interested also that no-one is directly answering my question when I've asked how often patients skip the part where they're in hospital with no neutrophils, getting a fever and waiting on their counts to go up. "She's certainly doing very well", is the general response. I wonder why it's such a secret.

Anyway, she did have lowish haemoglobin so we had some of that before we were discharged. We're also having two whole weeks off. The next round is due to start on 1st May but they're starting it early to see if we can make it out for the Australian leg of the International Wedding Tour. Never any guarantees but the nurse co-ordinator is willing to give it a crack.

I also remembered what the date was and that there would be a family gathering for a birthday, so we called in there on the way home. It was nice just to relax and have a cup of tea with my dear siblings before going on. No-one's really arrived home properly. The suitcases are still sitting around and it seems someone was baking before they left home on Monday….

Thursday 17th April

So, it's our first day at home today, and we went shopping. The fridge was awfully bare when we got up this morning.

I didn't realise what the date was until tonight, but it's actually a year today since Jacinta had her heart operated on. I just re-read my post from that surgery. How lucky we have been, indeed. I guess no-one will look back on the litany of procedures and think of it all as great luck, but in the scheme of things, she's done so very well. The heart op was supposed to be very difficult to recover from, but she did just fine.

This chemo was meant to knock her around a lot, but the worst she's had is some fluid overload and a really nasty nappy rash. No vomiting, no real nausea to speak of. No weight loss, meaning no nasogastric tube. We've had no one thing that's sent us spiralling downwards. Most recently, she's even skipped the bit where she gets put on antibiotics for a week, which gives her diarrhoea and means she can't leave the ward. None of that. Going home instead!

So on this day last year we were all completely exhausted and drained. It was done, she was recovering and we were about to meet some of the most amazing people, with equally amazing children. One of those parents, whose child grew his angel wings last September, has been reliving the past year day by day as she ticks off the events that happened on each calendar date last year. Since the start of this year I have been doing the same, though with a different viewpoint. My child is still here, and every day I try to fathom exactly how it has all unfolded and marvel in the difference between where we are and where we thought we'd be. This year has had many points where everything stopped and changed direction.

Tomorrow is the anniversary of our first conversation and where our reminiscent timelines connect. It's a privilege to have shared this year with them. This whole year has been a privilege, full stop.

Friday 18th April

It's Good Friday today, the biggest day in the hospital calendar. If you have to be in the Children's on any day of the year, so long as you're moderately sick and not wishing for silence and privacy, today is the day. It goes off. I'd take being at home over the most entertaining Good Friday any day though. I'm sure if we were in it'd be fun-ish, but wishing we were home.

They took footage of Jacinta a few weeks ago and said if it was used it'd be on between 5-6pm. We managaed to get the broken TV working in most of the screen (cracked LCD) and taped it to watch later. In the end I found out from my brother that there were a couple of seconds of her about 9pm! Ah well, I'm sure the people of Melbourne enjoyed it.

She's hanging out, looking very healthy. I actually remembered her meds today - and I just realised I forgot her second dose of one of them.....oops! They're all preventative so a skipped dose isn't going to kill anyone. Still, it is best to give them as prescribed!! That one I'll have to give a dose on Monday.

Bloods tomorrow, so we'll see where we're at!

Sat 19th April

The blood nurse came today and took some blood. Very straightforward. The nurse co-ordinator had mentioned that I'd have to pretend like we needed to weigh and check fluids etc to justify the blood test being done at home. It eventuated that I asked if we needed to do a weigh and the nurse asked why we needed to!

Everything's all pretty fine. A bit of sticky poo at the moment so I'll have to watch my diet again. At least at home going completely dairy and gluten free is possible without starvation. We're trying lactose-free milk (which I think is actually lactase-added milk, rather than lactose-free...) to see if that makes a difference to anything. We'll see!

From here on out, since our treatment will be very patchy and rarely two days in a row, I'll just blog when things happen, every few days or so.

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