Monday, 31 March 2014

Week 10 Diary Luke Aemia

Sunday 30th March

So Sunday was a bit more of the same pattern: go back to bed around 6am and sleep til 8.30 then again til 10.30 to catch up!

Then her sats were ok during the day. I didn't check out her neutrophils. We had lots of lovely visitors and were even allowed downstairs to sit in the garden so the day flew by.  We speculated on what would come on Monday when the consultant found out we had neutrophils!

Sunday night she woke again around 3 until about 5 and wound up sleeping in my bed. She didn't need much oxygen.

Monday 31st March

Today we slept in again (about 9.30 this time) and awoke to find a dodger telling us that morning tea was on. Yay! I love morning tea. I love it for both of the reasons I'm supposed to love it. There are yummy things and you get to meet other parents on the ward. I hate being so cliched but then I don't care a jot.

We had lots more lovely visitors today, one of whom found us in morning tea and the others, who met us as the first was leaving, at the elevator.

By the time we'd finished our busy morning it was well and truly lunchtime. The food had gone a bit cold so she didn't eat much. I resorted in the end to making popcorn. The consultant found us in the room, in a layer of popcorn. She said that we were ready to start again and could have a bone marrow aspirate tomorrow. "Tomorrow, or Thursday.". I pointed out that there was a difference between tomorrow and Thursday (because if you're fasting overnight it's good to know in advance and pretty soon after 3pm). She said she'd check. She said we'd start chemo again on Thurs if that was ok with us to stay in and keep on going.

I replied that I was more than happy to stay in so I could be home with my family sooner. I did say I wouldn't say no to a day of "day leave". She thinks Wed could work for that. This means we can go out and live life but we don't lose our room and we come back and sleep here at the end of the day. Excellent.

Miss J was very unsettled this afternoon, I suspect teething although there was a very runny poo after it all. I checked with our afternoon nurse about this bone marrow aspirate. She said she didn't know and she'd check. After I'd put Jacinta to sleep I came out and found the nurse. I hadn't heard anything so figured it wasn't happening. I asked and she confirmed that yes, it is! So we're fasting from 2am and in at 8! Must remember to wake up by 7.30 or I'll be going down in my PJs!

Tues 1st April

Ah yes, no chance of that!

I got a sneaky feed in just before I went to bed about 12. I got her back down without waking her, all good.

About 3am she woke up, very sore. It looked like teeth. She was now fasting for the procedure. Normally if she wakes and is very upset I feed her and then see if she needs anything else. Comfort feeds are such a cheating but effective way to solve nighttime problems! Trouble is, when you can't do one it does rather confuse the issue. I spent a couple of hours being yelled at for not feeding her, with a dose of panadol thrown in. I eventually got her back to sleep - in the chair by the bed on my lap, for an hour or so, then she was awake again! Again I was in the bad books. By about 7 I had given up and we were allowed to go down to theatre about 7:50.

She was second on the list, which was ok. She didn't like going under, which I wouldn't either if I hadn't given my express permission. Thankfully we don't have to do many more of those. It took about 15 minutes. I went to get breakfast since I was slightly delirious and took the wrong door when I got back so they had to call me to find out where I was once she was out. She wasn't at all happy, but she had a bit of a feed and we went back up to her room.

We saw the doctor who said we could go home today and we'd be starting chemo tomorrow! Surprise!

She didn't have any sats issues, which was good since the anaesthetist had suggested she might get set back a couple of days by the procedure. She just sat with me in the room. She was pretty groggy and not very happy. She stayed with me and had bits of feeds. She lost a lot of it when she did what seemed to be a sudden huge posset. After a couple of hours, while she was feeding she vomited all over the place.

She had an anti-emetic (make you not feel sick) medicine. Normally she doesn't need it. The nurse brought in her daily meds. We thought about lunch and she didn't have any.  When I picked up her meds to give them I thought about the diuretics. I thought about the vomiting and the fasting and felt that her nappy seemed pretty dry and she hadn't had one changed since the night before. This was in the afternoon. It dawned on me that giving the diuretic could possibly cause more harm than good.

So I gave the other daily one and queried it. The doctor asked for a weight - surprise surprise, she was down to her lowest weight this admission, 7kg.   The doctor agreed to skip that day's dose and the morning one too and reassess tomorrow. I've been feeding her as much as possible. She still hasn't had much in her nappies. It turned out to be hot when we left the hospital so she probably needs more fluid than usual. Still, if she's not brilliant tomorrow morning we'll head in earlier than they've asked.

Not long after the vomiting a lady popped her head in the door and said that the newspaper was here taking photos for the Good Friday Appeal, which is a big deal for the hospital. It's televised every year and they have celebrities and entertainment and a telethon. She said we could go down to the end of the corridor where they were set up and have Jacinta's photo taken.

I took one look at Jacinta and it was clearly not the day to be asking her to smile for the camera. I don't publish bad photos of my children so I don't want anyone else having the opportunity to either!
Later in the day she picked up and was much more herself and I did happen along the corridor as I was looking for another member of staff. I thought about it for a millisecond and wondered if I'd regret not putting her in the paper - not that there's any guarantee that these photos get used anyway.  But then I remembered that I don't read the papers on principle and so any excitement factor that may once have arisen from dealing with the newspaper is a bit out of date. I'm sure they have plenty of nice photos.

So there was much checking and bouncing back and forth until finally all the questions were answered and all the medications cancelled - which was not my intention, but is much more convenient!
And away we went, took 2 hours to get home in the very late peak traffic, and arrived to our empty house that is a little scary when people haven't been in it for a while.

She slept for a while on the way so didn't go down again til about 9, but she'll be in with me and no interruptions so maybe we'll get some sleep!!

Wed 2nd April

Well, maybe, but not really. She was still pretty unsettled all night. So much so that we slept in til 10.30 and my appointed leaving time to get back into hospital on time was upon us quicker than expected. I think I left a bowl unwashed in the sink…

I went the quick way, which was a great plan except at the very end. On exiting the freeway there were two possible lanes. I chose the right one since, although it had a car in it rather than being empty, it was the one I would need a few hundred metres down the road to turn right. Bad choice.

After a few minutes at the light I started thinking it was a long time. Five minutes went past. Then after a couple more minutes I noticed the road in front of me. There were metal strips running across the road about ten metres from the intersection. The car in front of me had stopped at those strips, clearly thinking that they were the white line marking the intersection. In front of the car I could just see the sensor strips which would tell the lights that we were waiting.

In the next lane another car had pulled up in line with the car in front of me. I noticed the car in front of me edge forward slightly and I edged forward too for moral support. Eventually after a few more little trips forward, the car in front had made it on to the sensor. The car in the other lane edged forward as well and clearly thought we were going to make a break for it because as soon as he saw a gap, red light still ablaze, off he went! I couldn't quite believe my eyes.

A few seconds later the light went green and we all progressed along to the next intersection where he was promptly pulled over by the police.

So I arrived in the carpark downstairs one minute before our appointed start time. Not a problem except that at midday, there are  no car parks. Such an absence of parks there is at that time that the double parking actually obscures the road bits in parts so you can't get through to view the absence of parks in some sections.

Amazingly after driving around fruitlessly for ten minutes or so I stumbled across a park and pulled into it at a very strange angle before anyone else could contest my right to it. (I did straighten up once the car behind me had moved on. Can't leave it like that!) Then we raced up, didn't stop to chat with people we met along the way and huffed and puffed into the ward. They weren't ready yet. We didn't start for another 90 minutes……

But we started.

This round is the same as the first. 96 hours of continuous infusion of cytarabine and daunorubicin and thioguanine orally in the evenings.  Miss J wasn't her usually chirpy self today. Once again her gums were giving her gyp. We tried the usual stuff which normally works a treat, but it wasn't doing enough. We called in the big guns. Numbing stuff. It did the trick and she went off to sleep eventually.

I think probably the chemo makes everything worse, like if you have a headache. A headache plus a stubbed toe is way worse than a stubbed toe.  I think it's similar when she's on chemo.

Anyway, I suspect we'll lose more hair this round. We'll see how we go.

Time for sleep for me though!

Thurs 3rd -Fri 4th April

Grr…that thing where it doesn't save and I think it has and I lose it all!

So Thursday was one of those full-on days you have when your child is unwell and does not consent to being put down ever. She had something wrong with her tummy or her teeth or both plus having chemo, making her feel rubbish. So we spent a a lot of time together. She had one sleep about dinner time for a short while and wasn't ready for bed again until about 10pm. The upside was that she slept all the way through til morning, which was lovely.

Today she felt much better, as did I after all that sleep, and she allowed me to put her down to play several times. She did have a couple of naps on me throughout the day, but was happy to socialise with our visitors from both the outside world and within the hospital.

I put her down eventually tonight and thought I'd sneak out. I got as far as off the freeway about 20 minutes away when the hospital rang me and said she was up and that she had been crying and that they could give her some codeine for pain…and I said that I'd rather come back because that was more likely the problem. They said not to worry, that they'd have a go at settling her.

When I got back she had settled and gone to sleep. She had also been satting low (having a low percentage of haemoglobin in her blood) and had been put on wafting oxygen. The nurse thought this was the usual thing for nighttime. (It was last week) I explained that this was not so and that it was more likely to have been from the upset of me not being there. She took her off the oxygen and she's satting nicely at 99-100. Her pulse is sitting between 98-102 which is making the machine go 'ping'. It goes off under 100. It's often a bit dodgy on pulse anyway, so it's not too much of a concern, I don't think. (Plus she's sleeping…)

So we're day 3 of chemo and counting. Getting there…

Saturday 5th April

It was a quiet day today. We just had the one dose of Thiaguinine (yesterday was two) and we had the usual. Little bit tired, but not much in the way of teething etc.

We had a couple of sleeps and I got downstairs for a minute.

Stayed up late tonight to see my husband's brother get married - or bits of it, over Skype! I saw my bigger daughters in all their finery, which was nice.

Lucky it's the end of daylight savings so the breakfast lady might let us sleep in…maybe….

Sunday, 23 March 2014

Diary Luke Aemia Week 9

Sun 23rd March

So today was a pretty run of the mill day, medically speaking.
The potassium wasn't given last night so the slightly low potassium result may have been false.
Jacinta's weight was back to around her base weight, so the Dr stopped all the diuretics. We just have to have normal potassium to be back to our once daily antifungal and thrice weekly antibiotic orally.
We still have twice daily antibiotics intravenously until the counts go up.
The weekend Dr thinks that there will need to be another platelets transfusion in a couple of days - but that's only if they don't go up on their own, and he doesn't know our Jacinta!
(Or am I clinging to tiny strands of hope that we might still make it out in time to wave our family off to the UK on Friday?)
We got to sleep in again this morning - and it slipped my mind to be dressed for the appointed time with Maria, the naturopath! Oopsie! Oh well. I was dressed by about 2pm, I think.

So, in terms of making it out, we're waiting for the platelets to hold their own, which will signify that the bone marrow is waking up. They told me at the beginning of this round that it takes longer to wake up because of how they hit it while it's down. The Dr today said you want the counts to be down because that means the treatment's worked. Not sure if the duration of the suppression indicates a better quality of treatment - I'd have thought dead leukaemia cells were dead leukaemia cells.

Anyway, here I was two weeks ago thinking that it was likely we'd be home by now, but it's nowhere on the horizon until those platelets wake up.

We had a few different visitors today which was good because the siblings and daddy weren't able to come, sporting a nasty cough.  Once again I found out about all the celebrities who'd been in during the week and hadn't made it anywhere near our room. We had Barbie come this week though, who could possibly top Barbie?

Monday 24th March

Well, we had 2 Geelong football players downstairs today - but I don't go for Geelong, so Barbie still wins.

Jacinta's weight was up by 300g and her sats at 95 or so, so they've decided to put her back on diuretics, but the Spironolactone - the potassium-sparing one. Hopefully this means breathing easily and keeping potassium until her counts come back up and we can turn off the antibiotics.

Have spent the last 3 hours finding out things for my husband who is flat chat and has no time to organise his trip to London this Friday. Lots of letting my fingers do the walking! Sore wrists and I still haven't found the best place to get a SIM card on foot without massive detours….Hmmm….

Tuesday 25th March - Thursday 27th March

I have to fess up: I can't remember anything that happened on Tuesday, except that the internet crashed! Accordingly, I couldn't blog at all on Tuesday.

Ah yes, I just checked facebook and saw that what should have been a straightforward exercise in hooking a sleeping Jacinta up for antibiotics at 7pm and then letting her sleep turned into a complicated exercise in hooking a rudely awoken Jacinta up for antibiotics at 7.45pm and people coming in and out for an hour and then it taking another hour or more for her to settle, which meant I missed rehearsal completely! It was nobody's fault really, but man it was annoying!

And now I remember, we were let off the leash! The nurse decided to unhook us between antibiotics doses (6 hours between) and then suggested we could go outside, to the park even!
So we did. I got some exercise, which was lovely, and could actually have stated with authority on the state of the weather for the day. Quite sunny and warm.

Wednesday was quite busy, my middlest came in as usual and we hung out. Miss J was a bit warm in the morning, tending to quite warm in the evening. We got downstairs again, to the playground, which was lovely. I asked the doctor in the morning if, since we could be unplugged between doses and if Jacinta's main problem was too much fluid, would it be reasonable to keep her unplugged all the time and only hook her up for drugs? The doctor had a chat to the nurses and they concluded that it would be reasonable, so we're now mostly free!

By the evening she needed haemoglobin and was not a very happy young lady. She wouldn't sleep on her own so when I eventually managed to extract myself, she was in the middle of my bed. I kind of arranged myself around her and slept there too.

Thursday was the day of the stuck lines. The thing with permanent intravenous lines is that you really don't want them to get blocked! You don't want to have to put in a new Hickman. That's surgery.
So there are three ways to "lock" the lines that drugs or blood flow through.
Strong lock is where you put a strong dose of anticoagulant (blood thinner) liquid in the tube, sitting there, making sure nothing in there clots, then you clamp it shut.
Weak lock is where you put a weaker dose of anticoagulant liquid in the tube. It doesn't last as long - a strong lock lasts a week whereas a weak lock lasts about 24 hours.
Saline lock is where you put saline in the tube. This lasts 6 hours.

So they were putting a weak lock in the tubes, then around lunch time Wednesday they said they were allowed to use a saline lock. Then they started 'occluding' repeatedly, which is where the infusion isn't flowing as well as it should.

Then this morning they were very hard to bleed back, which is where they check the line by drawing some blood back out of the tube to make sure it's in the right spot. They were getting a little stiff.
Then later this afternoon they could barely get anything back. They decided to replace the bits on the ends. They did this and they were still hard to get working.

I had to pop home and just before I did they got something called TPA (I think) which is what they give to stroke patients, similar thing to the strong lock, but heavy duty. They put this in the line. When I got back they told me it had worked and it was all bleeding back beautifully. (Yay!)

Now Miss J's sats (blood oxygen percentage) are sitting low and she's got a bit of wafting oxygen on.

The other exciting thing I heard when I got back is that the nurses had been having cuddles with Jacinta - who had woken up and not been screaming blue murder that I wasn't there!!! This has never happened. Not wanting to jump the gun, but perhaps we've turned a corner....

On the bloods front, the platelets seem to be trending upwards which signifies the bone marrow is waking up. Who knows how long it will be, but there's a little tiny light at the end of the tunnel.

And the family flies out tomorrow......

Friday 28th March - Sat 29th March

And away they flew.

And wasn't that interesting....

Jacinta's oxygen levels were a bit low still during the day so we had her on a bit of oxygen. She was feeling a bit warm too. The family came in about 11 and we hung out for a bit and then her grandparents came in to take over while I took the rest of the family to the airport to see them off.

She wasn't super enthusiastic about me going - she never really is.

When I got back she was sleeping on her Nan and before I entered the room I heard that she'd been dipping down during the afternoon and her temp had gone up over 38 - I was only gone three hours!
The doctors had been called in a couple of times and she was settled and on oxygen for now, but they were keeping a close eye on her.

Soon after I got back, she awoke and saw me and let me have it. I was told, in no uncertain terms, that things were not good! Then, about half an hour later, her temp was good and her sats were good. It was like the afternoon had never happened! She had been put on a second antibiotic though. Her sats that night were low and we needed some wafting oxygen - which is comical and slightly annoying that the monitor goes off every time she rolls over to get away from the mask.

I've now spent the last few evenings planning for the rest of the family's time in London, so I've been neglecting the blog.

The most interesting thing that happened on Saturday is that I asked the nurse looking after us to fill in the blood results from the last few weeks - I'm a bit behind. She did this and commented that we had some neutrophils. Sure enough, the very result from that day showed .22 - all of a sudden, just like that!

This is a going home number, so from then the game became to get her off the antibiotics and sort out the sats issues from fluid overload.

The night once again was low sats and oxygen. It was a broken sleep. I didn't get much.

Sunday, 16 March 2014

Week 8 Diary Luke Aemia

Sunday 16th March

Today the doctor came by nice and early and happily declared us to be 'boring'. She wished us a boring day. Ah well.

Maria came this morning, after several unsuccessful attempts to put Jacinta to sleep. She treated kidneys  as well as the usual cancer and white cells plus T21.

After Maria had treated her I finally got her to sleep, noticing that she was breathing quite rapidly. I had noticed this earlier as well, either last night or this morning, I can't remember.  I counted 30 breaths in 30 seconds. I had to go out for a few hours, leaving all three children with my husband, but before I went I mentioned to the nurse that it seemed fast. She was intending to do some obs shortly so she bore it in mind.

When I got back I heard that she'd been given frusemide (a diuretic) because of shortness of breath. She looked fine to me when I got back and what's more, she had been fine for my husband and there were no tears on my arrival. (Usually we have buckets.) This is a big step! I still wasn't allowed to leave the room later on, but if I can leave her asleep or with someone else and know that I won't automatically condemn her to hours of distress, this is good.

After everyone had left she had a bath and on the completion of the bath I noticed her Hickman dressing seemed a little bit loose. It had water underneath it. Dressing change! I tidied up the room and took some dishes to the kitchen.

On walking back I saw a familiar-looking doctor behind me and said 'hello'. Then I stopped and said "Hey, you're from the Women's!", and he was! One of the junior doctors who spent the most time looking after Jacinta in her first weeks with us is now working at the Children's as a Paediatric Registrar! It was so nice to see him.

zzWith a bit of reminding he remembered her history and was really pleased to see her looking so well, though not so happy about the leukaemia, but at the same time not completely surprised. He did say, "we thought that was just a transient thing…", which is rather telling.  Anyway, it was so lovely to see an old friend. It made my night.
Then back to the room, meds and bed. Fairly boring. Or so you'd think….

It's taken a while to find her nurse (handover time) but she's arrived and done her obs. All of a sudden Jacinta's sats are around 90. This is odd. Her breathing is a little shallow. Normally I blog in retrospect, but it's come up as I'm blogging. They're going to get the Dr to have a look. I guess we'll see what happens for the rest of the night. Who knows…..

Monday 17th March

Well, the Dr did come past and have a look. This doctor, who had never laid eyes on Jacinta before, decided it sounded like the beginning of croup. This was mainly based on a slightly hoarse sounding cough she did. We thought we'd watch and wait and keep her on wafting oxygen.

By morning the sats were slightly better when off oxygen and when the sats probe was replaced they were sitting around 99-100 again. Hmmm. That nurse decided to switch everything off. It made sense. It didn't explain the shallow quick breathing though, and the slight hoarseness which was there, despite the croup thing seeming to be a long shot.

Still, we went through the day being fairly much as usual, not giving anyone any trouble at all. Weighed in at 7.8kg - mused that maybe that's just what she weighs now, since she was 7.2kg two months ago and she is meant to be growing. (She's been averaging about 7.3 lately.)

Tuesday 18th March

This morning, when feeding, Jacinta seemed to be quite out-of-breath. She was almost pulling off to breathe, which was reminiscent of the state she was in prior to her heart surgery. They got the Dr to come in and have a look. She wasn't feeding then but sleeping so her breathing was slower and less laboured. The doctor didn't think she was working too hard and couldn't hear any fluid on her chest.
Her weight was about 7.7kg.

There was another episode later in the day where she was breathing very quickly and shallowly and she  was very mottled-looking for a lot of the afternoon. Still, she was the same. (Still, I was concerned.) Nonetheless she got off to sleep and slept the whole night through, pretty much.

Wednesday 19th March

Today she was working quite hard in the breathing department. The Dr came in and had a look and agreed that she was working quite hard. She still didn't sound overloaded, but her weight was 7.9kg and she looked out-of-breath. We got her a dose of frusemide. They assumed that the fluid going constantly in on top of her feeding was overloading her gradually. Can't wait for these neutrophils to move so we can stop the antibiotics! (Still not much in the white cells department, and they're only leukocytes.)

So I'll keep monitoring. It worries me slightly that she doesn't look overloaded with fluid. If it's not fluid then surely it's just the heart….. Still, we'll see.

On the plus side, her weepy nappy rash has a new friend in the special powder that goes on and makes a dry surface for zinc-based creams to stick to and create a barrier! Hoping the weeping goes from half-healed to fully healed by tomorrow.

Thursday 20th March

Well that was a bit of wishful thinking…

Anyway, it's reduced by half again.

So today we looked like we were overloaded even though we couldn't hear anything. We started on a daily dose of frusemide (lasix), the diuretic.  She's more comfortable now after a few big wees. Her haemoglobin was also at 79 so she was given some more. The nurses had a training thing last week on blood and the processes through which it arrives at the hospital. Apparently the value of a bag of red cells is about $350! I think platelets are more like $500. They don't pay this unless it gets wasted. (The government pays if it gets used.) Thing is, the blood bank makes up all these massive bags which are single use and they don't want to give a big bag to a tiny child, so half of it goes in the bin, and everyone comments on what a waste of blood it is!

Last night was a crazy night. She woke with a pooey nappy about midnight and I took her to bed with me, to ensure a better sleep - or so I thought. She either didn't sleep or it was very patchy. At 3am we emerged from out room to make a cup of tea. Our nurse for the night (one of the new graduate nurses, who is, incidentally, one of the smartest people on the ward) offered to sit out at the nurses' station with Jacinta for a while so I could get some sleep. I was doubtful it would work, but happy to try anything since I had my middlest arriving at 9am or so and was looking at about 5 hours' sleep.
She made it about 2 metres up the hall and Jacinta wasn't playing ball so within 60 seconds they'd arrived back in the room. I decided to try properly to get her to sleep so I rocked and she actually went down quite easily. I find that a good cry, for better or worse, seems to result in faster settling. I took her to bed with me, which was good because she woke every hour or so til 8am.

Anyway, tonight she was looking quite ruddy - that point beyond rosy where you know they've had enough red blood cells for one day. She was super tired but grizzly. It seems almost as though she has a bit too much and it's uncomfortable somehow. Maybe you get wired with too much red blood. Anyway, after an unsettled sleep from 7-8, during which she grizzled every time I put her down, then a period of wakefulness when I didn't let her sleep, she finally went down after another feed about 10.
She didn't drink much today - either her tummy or breathlessness were stopping her it seems. She didn't eat anything really either. Every bit of food was thrown away.

So she's still asleep now and I'm fingers X she'll stay that way!

Friday 21st March

I can't exactly remember what happened in the end, but she was connected and woke up and I had to sit up in the chair with everything. She went to bed in my bed eventually so I think we ditched the oxygen at some point.  I didn't get much sleep!

Today we had Bactrim, since it's Friday. We had lasix added yesterday as a regular dose and there's now a potassium deficiency which means the disgusting potassium supplement. One nurse today said he's never tasted it but he's had it spat back at him, so he knows it's not tasty! I do wonder how they can make salt and potassium tablets that are virtually tasteless and dissolve in the mouth but can't make a palatable single potassium tablet or liquid. It's a big dose too - about 5ml!

Anyway, we had lasix, tazomoxifen (antibiotic) and potassium all going in so it felt like every half an hour the pumps were going off and I'd be pressing the nurse call button.  No wonder the day flew by. We didn't have the same slightly serious patches of breathlessness that we've had the past few days. Possibly they're less serious because we know there's a dose of diuretic soon.

Just as we were going off to sleep, siblings arrived and announced they were kidnapping me and taking me to Luna Park, our quaint and super-fun amusement park by the sea. Jacinta was super happy and surprised to see her sisters and her Daddy and not super happy that she wasn't coming too. It was a bit sad that she couldn't be there, but it was so very therapeutic for the big girls (and us) to have fun with both their parents at once.

It was also World Down Syndrome Awareness Day. It was all over my Facebook news feed. I don't have much more information to give you all than I'm already giving on a daily basis, so I don't really need a special day to raise everyone's awareness. I think Jacinta has the respect of a lot of people and that's the purpose of being aware of a condition. If Jacinta is people's definition of Down syndrome then that's a good thing. (So long as Jacinta is not defined by people's erroneous assumptions about Down syndrome.)

I have to say I don't really like the odd socks thing and I won't be doing that. I don't like to raise awareness by using something that ordinarily shows you're not operating at 100%. Showing up to work with odd socks would gain you some degree of ridicule. It's a duffer who puts odd socks on. Either they didn't notice or they had no clean pairs. Either one is not the doing of a capable person.

I finally found something that explained that two socks placed heel to heel looks like a chromosome karyotype. It's a bit of a stretch for me, particularly since it took so long to find out the reason.

Anyway, I'm all for letting people know that there's a new definition for Down syndrome. I'll just keep doing it my way, one day at a time!

Saturday 22nd March

Well, as has been the pattern lately, as soon as I was getting ready for bed Miss J woke up. It was midnight and I was really really looking forward to bed!!

In my less than brilliant (sleep deprived) state, my sleep-inducing ideas were pretty thin on the ground. I was scraping the bottom of the barrel and finding I'd cleaned it out already. We tried for a couple of hours then watched the latest episode of Dr Blake's Murder Mysteries. She quite enjoyed it.

Finally she was so wrecked that a bit of the old 'spin around in a circle til their eyes shut' did the trick and she went down without argument.  At 4am. The main difficulty had been that she was on the sats monitor and couldn't reach the parent bed. Normally I just take her with me and feed her to sleep with a cuddle. Works every time.

As it was she was taken off the monitor eventually so when she awoke in the wee hours I took her back to bed and we slept in til 11. Thank goodness! By the time I was ready to make toast for breakfast the lunch tray had arrived, so she had lunch for breakfast, naturally.

They gave her more things to take orally, because clearly she didn't have enough. (Or because it was medically indicated…) The antibiotics lead to fluid overload which required diuretics. The diuretics have now caused potassium loss which means she takes oral potassium twice a day (which is 5mg - lots, and really strong tasting) and another diuretic which saves potassium but is less effective as a diuretic, but at least tastes alright. It can't be done intravenously.

So now we're doing about 10ml of meds by syringe with breakfast. Not a fun time when she takes about .5ml at a go.

We had a nice day, with siblings in today. There wasn't much happening, just antibiotics and diuretics going in. Platelets today too. Waiting, waiting. Fingers x she stays asleep…...

Monday, 10 March 2014

Week 0 -1 in hospital with Luke Aemia Summary


So we were admitted, then told the procedure would be the next day.

We met the oncologist who encouraged us to stick with our "let's assume it's the best case scenario" viewpoint. She was quite positive and straightforward. She gave us the basic scenario about what was happening in the short term and that we'd know in a couple of days exactly what we were dealing with and that we'd begin treating as soon as we know. I asked how long we'd be in. "A couple of weeks", she said. I asked about going to England in April and got a reluctant but point blank 'nup'. (Wouldn't it just rot your socks!)

She told us that at the same time as the bone marrow aspirate they'd do a lumbar puncture, where they would put a very fine needle into the space between two parts of the lumbar spine and withdraw some fluid to test for leukaemia cells, since they often wind up in there. In the same procedure they would also put in a little chemotherapy, since it was almost a foregone conclusion that there would be cells there and when dealing with needles and spines, best to go in once and be done with it. So all of a sudden, 'go in, have a bone marrow aspirate and take it from there', was becoming, 'have a bone marrow aspirate and lumbar puncture and start chemo then stay in for two weeks'.

We were told that there was a time constraint on the bone marrow aspirate part of the procedure. Since the samples must be tested fresh and can't sit overnight, they would have to be taken while the lab was still open. This meant that Jacinta wouldn't go in for the procedure very late in the day because pathology would be shut. She was hoping to be first up so this wouldn't be an issue. Worst case scenario was that things would crop up and if it got too late it would be done on Thursday.

This doctor also told us that she was near the end of her rotation, that she was on liquids at the minute and had been on solids previously and was going to work in another area after this. In the children's oncology they have solid cancer and liquid cancer. Solid cancer is what we usually think of as cancer. It's tumours, funny moles, cysts etc. Liquid cancer is cancer of the blood. In grown ups a haematologist looks after leukaemia. In children, since most of the cancer patients have leukaemia I guess, the oncologists look after them.

The Surgery Registrar came around and told us that at the same time as they did the very quick and simple diagnostic bone marrow aspirate and lumbar puncture, he'd like to put in a permanent intravenous (IV) line with not just a single cannula but what's called a 'double lumen'. Sounds like a trick in poker or an olympic dive with a 3.1 degree of difficulty, or possibly a tarot card - but not a good one.

He said that it would be put in the jugular vein. "You know, the one in the neck that you see in vampire movies and they bite their victims and they bleed everywhere and die". With hand gestures. Seriously. He seemed Spanish. He said this permanent line is called a HICMA line. I forgot to ask what that was an acronym for.

He got us to sign the paperwork. There were several points on the front page and he summarised them for us, by saying "this basically says that I've told you that…..". I was reading it through and he did tell us all of it except the last point which is,  "I understand…that I can withdraw my consent for this operation at any point up until the beginning of the operation".
I figured it was an oversight and didn't bring it up, but was glad to know that because no-one had ever told me. (Last time it was done on the phone between Kane and the surgeon and I just signed it at the hospital, assuming it was all correct. You're kind of at the mercy of the surgeons when you need open heart surgery so we pretty much just did what we were told to.)

The Haematologist came as well and got us to sign the consent for the bone marrow aspirate and lumbar puncture. She explained it all again. I was starting to feel informed when I heard things I'd heard before and understood them already.

We were shown around the ward and we got our heads around the sudden couple of weeks in hospital. I met the lady who stocks the tea room and is officer in charge of fun.
I gave Jacinta a bath and made plans to feed her before 2am since she'd be fasting the next day and hopefully be in first up. They were going to need an IV line in to give her fluids.

I don't know if I've ever blogged about the great successes we've had with putting an IV line in Jacinta's body while she's awake, but if so, it'd be a pretty short blog!

There was one in her foot when I came in to see her in the special care nursery the night she was born. They tried and failed in the NICU at the Women's and eventually gave up, using the umbiline a little bit longer and crossing their fingers it wouldn't be needed, and got lucky.  They tried when we were admitted for dehydration and wound up using the NG tube for hydration instead.

They tried while she was post-op after the heart surgery and there was a MET call. They had several goes from a couple of people and no-one could find a vein anywhere. They came up with another solution to the problem.

So at the start of this admission, she had only been successfully 'cannulated' (where they put a cannula into you) once, apart from under general anaesthesia.

 The night doctor had a go at putting one in. I told her it wouldn't be easy. She said she'd try once and if she couldn't she'd leave it for the higher up doctor who was on a bit later. She tried, she failed, she handballed. (International readers google AFL, handball) We waited for the next guy. He came. He tried. He tried again. He tried one more time and almost had it but it slipped out. That was his best shot. He handballed. This was about 11pm.

The next guy was a doctor from Intensive Care where they do this all the time. Any time things to do with veins or hard practical things need to be done, they ask the guys from Intensive Care to come, and they're very busy. It was either him or someone from Anaesthetics. They find veins on everyone, all day. The Intensive Care doctor brought an ultrasound machine about 1am. He found the vein. He went to cannulate and the vein disappeared. He had another look and there it was. He went to cannulate and got it in, just, hanging by a thread. He taped it, to make sure it didn't get knocked out.

He wrapped it up a bit more, just to be sure…
Just one little IV line in all those yards of wrapping.

And then it was time to feed so we didn't miss the fasting window and start transfusing some platelets. All done, time to go to bed.


So on Wednesday we woke up and I didn't feed her. We gave her more platelets ready for the morning procedure and when the doctors came round they said to stop the drip since it was playing up and she'd be going in for the procedure in the next couple of hours.

Then there was a delay. This began a series of asking if we were done yet and finding it was delayed by another two hours. When you're doing a 6-hour fast and you get a 2-hour delay, you never get an opportunity to eat anything, and since Jacinta was not having any fluids any other way than breastfeeding, it got to about 3pm and she hadn't eaten since 2am or had fluids since about 9am. We decided to try cup feeding or bottle feeding some watery juice. Got about 1ml in. Managed about 10ml by syringe. This was about 5pm. She was beyond hungry, tired and grumpy. At this point I also queried with the nurses about whether or not the procedure could be done at all, since this very scenario was the one in which the doctor on the first day had mentioned we'd be bumped to the next day.

I asked the nurse looking after us and she said she'd check. I didn't hear back. I waited a while and went out to the nurses' station. I asked again and a very confident senior-looking nurse told me not to worry, that they'd take the sample and just process it the next day if pathology was shut. Alarm bells!!! This is exactly what the doctor said they could not do and I told her so. She was quite surprised and said she'd check it out.  So at this point I was doubtful that they could get the pathology part done in time, but even if she could, I was looking at my very out-of-sorts daughter and thinking that I did not feel at all comfortable with her going into surgery in that state. We were going in for a routine insertion and diagnostic procedure, not life-saving emergency surgery. From my observation, I would say the better you are when you go in for surgery, the better the outcome, and at this early stage in the oncology business I was not going to send her in well below par and have it all go wrong and have her wind up in ICU over a bone marrow aspirate and HICMA insertion which could wait 12 hours.

So here I started thinking about that clause on the consent form I signed and getting ready for the conversation where I was going to have to forbid them to take her into surgery. I was downstairs with my aunty having a cup of coffee when my husband rang down to tell me that the surgery had been postponed until the next day. I couldn't have heard happier news. She got fed that very minute and started being more herself. I fed her as many times as I could squeeze in before 2am, when she fasted again. We had some cousins visit that evening and they swapped surgical war stories re IV lines. I said that I didn't mind them putting a line in her head if they could find it easily. We all had a laugh about that.


Thursday morning began and they said she'd be first on the list at 8am, barring emergencies. They came down to get her at about 7.45. We've never gone to surgery as an inpatient before, they take the whole bed, toys and all!

My husband met us just as we were about to enter the secret tunnels for patient transport. We sat in the pre-op waiting area and had several people come around and talk to us. I made sure the anaesthetist knew that she was VERY DIFFICULT to find a vein on, so that if he had a 'first try' procedure and a 'second try' procedure, he should skip those and go straight to 'find a vein at all costs'.

We killed some time, hanging out.

The surgeon came around as well and he said that they would try to put a 'double lumen' Hickman (oh- it's a Hickman!!) line in, but her vein might be too small, in which case they'd put in a single. A double lumen is where the line splits off into two ports and it looks a bit like this:

This is the double lumen held in place by what's called a butterfly clip, or a statlock. It's clipped into it and then the clip is stuck onto the skin with super industrial strength glue. If the clip comes undone while stuck on to the skin, it's really really hard to get done up again.

This clip helps the Hickman stay in place in case it gets tugged. It really does. (We found out for ourselves. Oops!) They also use the very high-tech method of pinning it to the clothes with a safety pin. Extra doubly sure. The thing with the double hickman is that you can run two things at once. With the chemo, you need to run two things at once. As we've previously mentioned, Wally is easier to find than one of Jacinta's veins at the best of times, so we were fingers X for the double lumen.

So this time they said one of us could go through to the theatre area and stay with her until she was under from the gas, which is strawberry flavoured. (I have a sneaking suspicion that Jacinta is going to have an aversion to artificial flavours by the end of this stay.)

So without giving my husband the option - well, I did kind of, but not really, I went off to hold her hand. She really didn't want to have the gas. She had it anyway. I was taken back through to the pre-op waiting area and the person taking me asked how I felt about it all. I responded in what I thought was an appropriate fashion.
"You're very chipper this morning", he replied. I told him that when your first experience is open heart surgery, pretty much anything else is a walk in the park. We went outside to wait in the very waiting room where I did all that waiting all day during Jacinta's heart surgery last year. Ah, the memories.

There are some fascinating conversations you have in that waiting room. Most parents are having subsequent operations, not the first. Most have been in and out of the hospital many times. The conditions we're talking about are many and varied. Just about every parent knows so much about what's going on that they are mistaken for medical personnel by the medical personnel.

I can't remember the illnesses we were dealing with. One was to do with growth issues. This mother had timed the surgery down to that very day to fit it in with the school holiday timetable of her 13yo daughter, since her daughter's conviction that the surgery was necessary was shaky at best and she'd refused to have it done at least once in the previous 24 hours. I don't recall the other.

So after about 2 hours they appeared at the door and told us that the double lumen was a goer. Yay! They said that the haematologist was still doing the other bit and that the IV line they put in before the procedure should be taken out.  After a bit more waiting, someone took us to recovery.

Our recovery nurse was one we had for a day back in ICU after her heart op. It was nice to see a familiar face. She was the one who mentioned that it wasn't unusual for children with Trisomy 21 to present with leukaemia. Jacinta was on a bit of oxygen, as her lungs got used to being out of surgery. She was super drowsy and had a little feed, but needed to take the oxygen with her. She looked a bit like she'd been in a fight, but it was nothing compared to the heart surgery. They had put the IV cannula in her head. The nurse said that she didn't see why we should take the line out, since it was in. She figures they're hard enough to get in, why take them out?

There were two sites oozing (that's the technical term, honestly) blood a little. One at her neck, where the vampire bite was and one on her upper ribcage, under her arm, from where the Hickman was emerging. Once we got her back to the room the nurses fussed over her a little, getting her cleaned up. The doctor had a look at her and said the IV cannula in her head should come out, since it's an infection risk. Jacinta was quite squirmy and unhappy. As she moved her head from side to side, it seems the IV came out on its own. It was quite unreal for a moment, when she let off a really good yell and blood trickled out from the Hickman site and the empty cannula site in opposite directions at once. Quite the comedy of errors. We got it mopped up though and all good in the end. Then she was sleeping.

And this is the cannula that fell out…
It was a blood bath.

The oxygen stayed on then for the short term. She was allowed to hang out and have the rest of the day off. No results meant nothing to do except be very cautious of the Hickman, to allow it to graft to the inside of her skin, and recuperate.

The lumbar puncture and bone marrow aspirate left tiny little wounds. You couldn't see the lumbar puncture site at all. There were band aids over the bone marrow aspirate sites.
And we waited…..


Friday was a day off, sort of. Post-procedure they let Jacinta rest. She was still on oxygen though. She had the prongs on rather than the mask because her sats (blood oxygen saturation levels) had dropped fairly low while she was sleeping. (They like them over 95 generally, and they'd been hovering between 80-90ish.) Thankfully this time they didn't make her nose bleed.

So we kept her company, took care of her oozing Hickman site and wound up drawing a line around the ooze to see if it was getting bigger or not. We played the 'put your prongs back in' game quite a bit. She's very good at getting them out. Mostly, we waited for the results of the bone marrow aspirate and lumbar puncture. They took a very long time. In the end it was about 3pm when they spoke to us, well over 24 hours after the sample was taken.  It took them that long to specify exactly what we were dealing with.

We had a sit down meeting with the team. There were 5 girls in the room and my husband. There was the Oncology Fellow, the Oncology Consultant, the Nursing Care Co-Ordinator, the Social Worker and maybe one other….quite refreshing to have a completely female team, and oddly appropriate.

They told us that she did have AML, which is the type of leukaemia we were hoping for, if we had to have it at all. They did also say that there was a thing called GATA1 which was there. I didn't really absorb what she was talking about, since I didn't get the term in the first place and was busy wondering what she'd said. (I have since read about AMkL and GATA1 being a very good thing in T21 and AML, but will check that out with them.)

They said that there is a specific protocol for treating leukaemia in T21. They said that T21 cases often have a greater sensitivity to the chemo drugs and the doses are lower. They also said that the course would go for 6 months and we'd be in for that whole time, with maybe a couple of days off here and there. They said that the success rates were greater than 85% and even said that they did have success rates as high as 100% some years ago but that the death rates from the treatment were too high so they made the treatment safer and settled so far for the 85% leukaemia cure rate.

They said that they'd start the chemo right that very afternoon and off they went to order the drugs and we sat there with the social worker for a minute (who's very nice and awfully helpful in getting various cycles organised for us, but loves to revisit certain events and do a kind of 60 minutes interview afterwards) and then on our own. There were a lot of things we were told. Someone said that people usually only remember six things and they joked that the names of the people in the room would pretty much be the six. I remembered one.

6 MONTHS!!!!!!!

So they started Jacinta on Cytarabine, Daunorubicin (which is red and makes wee red and even tears red, like stigmata) and Thioguanine. The first two were intravenous and the last was a tablet.
The doses were small and they had to run extra fluid through the line as well to keep it open. This meant she was getting about 15ml of fluid into her veins every hour.

So suddenly we were here for the long haul, with no end in sight!


On Saturday morning, Jacinta looked a bit like the Michelin man. Her breathing was a little shallow, she was a little bit sweaty and was having a bit of trouble feeding. It hadn't been like this since before her heart op. Oh dear.

They looked at it and got the Cardiac guys up to do an echo etc and found that it wasn't the Daunorubicin hurting the heart, but fluid overload from all the things going in. Time to start the diuretics. Her sisters came in for the day and got fancy new tiaras from the stall downstairs. I bet the Michelin man never looked so fancy…

We were put back on oxygen for a bit while sleeping, since her sats were fine awake, but dropping down to about 90 during sleeps. This was just with the mask and a bit of wafting oxygen rather than it being over her face or the nasal prongs.


It's amazing how quickly fluid can blow you up like a balloon, then losing it can shrink you back down. It took only 12 hours for Jacinta to become overloaded and it took less than 24 hours to offload all that extra fluid. The nappies were like big wet squishy boulders and if I wasn't on top of them, it would all come flowing out. Slightly toxic wee on your jeans. Lovely.

This photo was actually taken much later, after this admission was finished, but if you look around the fastening, you can see the red tinge to the name band. This is the only one of her name bands to have this tinge. Clearly the Daunorubicin is sweated out too!

Anyway, by the middle of Sunday, we had located her chin! She had a lot more energy too. Back to her old self. (Phew!)

From here the says all start to blur into each other. According to my diary there was a week of not much. She stayed on the diuretics. She was allowed off the pumps about Thursday (according to Facebook) and we started doing oral medications. She managed quite well. It's been great for her swallowing!

This was first week back at school for my eldest. My middlest's last week before kinder started. It was a week of tying up loose ends that I had planned to do without a child in hospital! I sat up and made my middlest's kinder portfolio cover and got ballet stuff organised. We got some kind of routine set up for the Mon-Fri child minding arrangements with help from some very kind family and friends. We had a go at implementing this plan for a new kind of temporary normality.

On Friday it was the last day of that rotation for all the Fellows. (Most of whom are ladies.) Our lovely Fellow named Di finished up. She rotated into Haematology and promised to look after Jacinta's blood from that angle.  So Dr Di's gone to the lab. I miss her.

Jacinta had a little blood blister on her tongue this day, out of nowhere.

The next day there was one that looked like this.

And there were some petichiae on her face, like this.

So, her platelets and haemoglobin being low, she had transfusions of each in turn.

And there we are. That's the beginning of the 'how we came to be in hospital with leukaemia' story.

Everything from here is now being diarised in the numbered weekly diary entries. I hope this has provided some resourceful examples for those wondering how it all goes.

If there's anything you want me to add, leave a note in the comments and I'll put it in.

Sunday, 9 March 2014

Week 7 Diary Luke Aemia

Sunday 9th March

So it's our 7th week of treatment. We're at Day 14 of this course of chemo. Day 56 of our relationship with Level 2 of the Children's.
Last course I was told that day 10-14 is the key time for neutropaenia. I was watching out for a fever during those days. It arrived on Day 14. This time I'm not looking out for a fever. I'm also not expecting the counts to go up in a hurry. It's looking like we'll need platelets tomorrow. We're in the thirties.

We were definitely hearing from Miss J's teeth today. Lots of knocking but no-one at the door though.
Everything's looking good otherwise, temp is sitting just under 36. Sats and BP all good. Smiling away. No probs.

Today Maria came in again. We've finally managed to be in the right place at the right time. I also introduced her to another Mum here whose son is a bit younger and doing the same treatment for the same thing. Hopefully this won't cause issues with her going from one room to the next, making house calls!

Not much else to report. Yay!

Monday 10th March

So today is that lovely public holiday they call Labour Day. That awesome day off which allows us to go and watch the Moomba parade (google) - if we're not in hospital!

Miss J's doing as well as usual. She looked like her temp might be heading up but then it was back down later so that's all fine. The assumption is that she will get a tamp at some point, though last time it was day 14 so we're doing just fine!

Her platelets were down to less than 10 so we're having a transfusion. This combined with the siblings being in today means that little Miss J is not in bed! I expect we'll look at sleeping some time soon.

Otherwise nothing much to report and let's hope it stays that way!

Tuesday 11th March

Today we had very little going on. Jacinta had something gurgling away in her tummy, which I suspect was the tiny bit of spaghetti she tried. She's not meant to be that sensitive to wheat, but I think she's better not to have it anyway. It's hard to avoid on the hospital menu, however!

They also took a swab from her nose, since it's been runny on and off for a week or so.

She was very unsettled at bedtime. It took about 2.5 hours to get her to bed. So much for the early night I had planned! (And the sneaking off I was going to do.)

Wednesday 12th March

Well, today was the day we were waiting for. It all began in the usual way, we got up and faffed around, pretending to be well. The nurse came in to check her temperature, which is the only thing they were keeping tabs on more than once a shift.

37.7 it said. Really? She didn't feel that hot. In fact, she felt quite cool. Tried again. Same thing. Tried a timpanic (ear) one rather than underarm. 37.7. It really was 37.7 (She's been reading 35.8 most days)  The cutoff for starting antibiotics is 38. (Though the last Fellow actually said that because Jacinta reads low she'd be starting them at 37….) It took an hour or so, then she felt 37.7.

Checked again once she felt hot and we were at 38.3. Dr came in, made the call. Started the ball rolling. They had to find a syringe driver (the kind of pump they use when they're not using bags of stuff, just little amounts in a syringe), which was a challenge because they had begun updating the software on all of them. They finally found one and then had the conversation about how they were meant to use it, since they'd had training on it that morning and couldn't remember what to do.

They decided to override it and use the old system on it. Easy. They also mused that they might just do this every time in future……except it's now hospital policy to use the new software and they'd be in trouble!

So after much to-ing and fro-ing we had two drivers on a pole with antibiotics going through.
The doctor made an interesting comment. They do explain things again each time they happen, which is nice. You pick up extra bits of information the subsequent times. The thing I picked up this time is that the chemotherapy drugs can affect the body's ability to regulate its temperature. That's interesting! He was dubious that the temp was caused by an infection and said they'd check to be sure, but that the cause could well be just the drugs.

So she's on the "antis" until her counts come up. (I'm sure they call them "ABs" up in cardiac…) Oh well, it was nice to be unattached for as long as we were. She was then feverish pretty much all day and night. I wasn't allowed to put her down. If she was asleep she would wake up to remind me that I wasn't allowed if I thought I might just get away with it.

Eventually I cracked it at midnight and flopped down on the makeshift bed, threw a pillow and a blanket on and slept in my clothes with her next to me. I didn't write this blog on Wednesday!

Thursday 13th March

So today we woke up much cooler. It was dressing change day, which is never a barrel of laughs, but isn't up there with having a line put in either. Things were pretty quiet all round. The antis continued, the bloods for culture continued. The more frequent obs continued (because of the drugs).

My middlest came in so we had some things to do, like go to kinder and go for  a walk with another little girl in here who's 4. She also took the opportunity to use her stamps on the walls and slather her hair with strawberry body butter. I then took the opportunity to get all the knots out of her hair while she sat and complained.

Miss J still wasn't a fan of being put down today so it was such a fabulous relief when, at about 6.30pm, I finally had my sleeping child in her bed without any part of my body in contact with hers.  Having had no downtime whatsoever since Tuesday night, it was a welcome relief! I went downstairs - the penultimate indulgence. (Leaving the building is the ultimate indulgence.) And I'm planning an early night….if she doesn't have other plans. Fingers X!

Friday 14th March

She had other plans. Still, I decided to just take her to bed like last night. It doesn't result in a brilliant sleep, but at least it results in some.

Today we were rocking along with significantly fewer red blood cells and platelets. You can't get any lower on the white cells.  They transfused haemoglobin and by the end of the day there was some mottled skin, increased breathing and grizzliness. They were waiting on ok for the diuretics, though her weight had gone up a few hundred grams over 24 hours. She also had very runny poos, most likely due to the antibiotics. Her bottom's quite raw after about 5 of them in as many hours. Here's hoping it gets a chance to heal overnight.

She managed some sleep in my arms today and went off quite enthusiastically tonight after her last poo.
She stayed asleep nicely while I stole away to record some music for the wedding we can't get to.
Still asleep, so fingers X there's a bit more alone time in there!

Saturday 15th March

Today was fairly uneventful. I think the most eventful thing was the querying of the 5mg of Bactrim which arrived in place of the usual 2.5mg. "I don't know why I did that!", exclaimed the surprised nurse. We're clocking up a small tally of victories against human error, which is more satisfying than alarming. It's just a parent's job to make sure these things don't happen, because they're bound to here and there, in my opinion.

We had siblings running around with other patients most of the day today, and Miss J got a little sleep. She went down early though and we managed to sneak off for an evening out with the siblings' favourite aunt-to-be.

While I was out, around 10.30 I had that old warning signal known as "my boobs are hurting", which indicates the baby is about to wake. I kept my eye on the phone but nothing happened. When I arrived back around 1am, thinking she must have slept through, the nurse on overnight told me that she did actually wake up but resettled on the nurse's shoulder without a fuss. This is unprecedented for this admission!  Definitely a step in the right direction. (And I'm sure I need not mention that when I asked the nurse what time that was….)

Sunday, 2 March 2014

Week 6 Diary Luke Aemia

Sun 2nd March

So it's our last day at home today.

Nothing much to report. We all spent the day together which was nice. Jacinta stole a couple of naps here and there.

She was v tired tonight and couldn't sleep. Kept being woken by my middlest. The sad thing is I had meant to have bedtime chats with her sisters but they were both asleep by the time she finally went down. Oh dear. There's still the morning…..

We got some inexpensive BFF necklaces today in an attempt to create a sense of connection for my eldest. The plan is to say goodnight to the necklace and know that the person at the other end is doing the same. We'll see how it goes.

Tomorrow we see the Dr and start chemo in the evening. Hope it goes like last week. Then we'll know what we're in for at least. Might have to read back in the blog to remember!

Mon 3rd March

So today we came in. Poor old Jacinta was sleeping soundly in her carrier when we arrived at the hospital day oncology centre. She awoke just as I put her carrier down in the room where she was to be measured. I don't think I've ever seen her quite so "where the hell am I and what's about to happen?" as today. I told her what was happening but it was all a bit quick. She got pretty grumpy. Then, in  the next room, the nurse insisted on a bare weigh. All the reasons given were not really reasons since each was contradicted by the previous weighs on the ward. (We need it to give meds, we have to on the baby scales. How about, "we always do it this way and I can't be bothered checking"?) Therefore Jacinta, naked and just awoken let her have it and she didn't even apologise to Jacinta for making her uncomfortable, just clicked her fingers above her head to try and keep Jacinta still.  I don't know where they found her, but I think we'll be avoiding that one wherever possible!

Everything today was pretty routine really. Dr was all good. The room was ready so we dropped the bags off and went to chill down the road and play wedding stuff with Jacinta's aunty-to-be. Once back and settling in, I realised that my phone needed to be charged and went to charge it. It was gone. I searched through both bags I'd brought back and it was in neither. I knew I'd had it on the way back because it had gone flat in my hand. I thought I'd put it back in my bag.

I excused us from the ward and hurried downstairs and asked around. Then I retraced my steps as far as when I remembered last having it. Nothing. I came back and pulled out my laptop on the off chance someone had found it and plugged it in so I could use Find my iPhone. Someone HAD found it and plugged it in! I could see its exact location - and it wasn't exactly local! I think the kind finder works nearby. She volunteered to drop it off. All sorted in under two hours!

You know, for all we whinge and moan about these days and technology making us lazy etc, this kind of thing is very very useful.

So then it was time to start the chemo. Miss J had a late sleep so I didn't bother trying til she looked tired and she went off around 10pm I think. Last time she was grizzly after the chemo so I figured she'd be restless again. Not so much though, which is nice.

Time for me to sleep - though I just realised I have no pillows….we'll see how we go!

Tues 4th March

I found a pillow. No blanket though, just sheets.

So today was fairly run of the mill. Had morning chemo, didn't really settle until well after but had a good long sleep and was tired all day, but what does one expect?

I got her off to sleep around 6pm and found her awake on my return to the room from visiting friends up the hall about 6.50. She wasn't happy with me. I got her up again and since the chemo was starting in about an hour I kept her up. I figured she wouldn't feel like sleeping. Quite to the contrary. She felt like playing the squealing game, where you stare each other off then squeal at just the right moment and make the other one burst out laughing.

It was all very enjoyable until the child next door started crying and I remembered we were in a shared room and shouldn't be squealing at the tops of our voices at 9pm in a children's ward! We went for a walk, with Miss J squealing at the most unexpected moments and laughing her head off. If it hadn't been for the children trying to sleep I would have enjoyed her comic timing immensely.

On arriving back in the room I changed her nappy and right at the end of the change I thought I saw blood under her stat lock. Her Hickman line has three key points on the outside. There's the site where it enters the body, which is covered by a clear dressing that is changed weekly. There's a stat lock, which is a clasp that grabs on to the lines and sticks to the skin, preventing the line being pulled out. Apparently this is a newer thing. The third thing is the very hi-tech "elastopast and bobby pin" fastening the lines to the singlet. Each of the last two acts as a failsafe.

Yesterday I thought one of the pieces of elastoplast was loose. This afternoon I noticed that the stat lock was largely unstuck and pulling away easily from the skin. I checked with the nurse who said it could wait until the dressing change was due on Thursday, so long as the dressing wasn't being pulled away.

So when I thought I saw blood under her stat lock, I assumed it was that the dressing was causing skin to pull away. Actually no, she was bleeding from her Hickman site and it was coming out of the dressing, through her singlet and all over her tummy.

Quick cleanup and dressing change! Then we had to get a chest X-ray to see how far it had moved, because it seemed to have come out a bit.  I got her back to sleep.

We took her down to X-ray in the end, because they're just so busy. It took all of 10 seconds.
On checking the X-ray they found that since it was put in on 23rd Jan, it has actually gone IN rather than out.  They're happy enough with it so they're giving platelets to help stop the bleeding (and she's at 23).

SOOO ready to sleeeeeep!!!

I have a blanket.

Wed 5th March

OK, so today was one of those days where you just don't stop, and I think it may have been a combination of being on chemo, my middlest arriving with the last vestiges of her cold in the form of a very infrequently occurring but still quite chesty cough, the shared room, the sleep deprivation of the last two days (Jacinta's, not mine) & teething.

We stuck to the room and everyone needed me all day. Woohoo! Except for the repeat chest X-ray. I never found out what the results was actually, I didn't get a chance to ask. Must have been ok!

We had the last round of chemo despite the line looking like it had moved. They requested the repeat x-ray later because it seemed that Jacinta's head had been forward and this might have made the line look like it was further in. Crazy! Thankfully the nice nurse was happy to hang out with Em while I copped the radiation in my head, arms and legs. Yesterday they didn't give me a vest at all….hmm….

We were very tired today. Not ill or anything. Bit of diarrhoea towards the end of the day. We DID NOT like the injection. It's interesting. She's fine with a blood test, via finger prick or vein in the arm. She's fine with chemo going through her veins via IV, but inject a bit of chemo into her leg and she's not one bit happy, for a good few minutes. This is the girl who gets over it as soon as it's done. Injections get a real "What the $%*$!? did you do to me?" reaction. Mind you, I don't think that there could be much worse than chemo drugs that could be in them, so it stands to reason really. They wear full goggles, plastic coverall and gloves to administer it and change it etc so you shudder to think what it's doing to her body. (Aside from killing the cancer and giving her a very good to almost certain chance of survival.)

I did ask today how it was looking in terms of staying or going. Pretty definite staying at this point. The Consultant has decreed that it shall be so. I have fingers X that on Fri (when I've heard on the street that they do the discharges of everyone they can and reshuffle the rooms) we'll get moved to a single room. Wouldn't mind our old room back…….tiny chance of that though. I'd settle for my own bathroom again.

So by the end of the day, my middlest had completely done her dash, I had pretty much done my dash and Jacinta had well and truly done her dash, as she told me while I was inexpertly getting her dressed into her PJs rather than feeding her and then for a bit while I was feeding her. Oh, she was not happy that she'd been ignored today - which she hadn't exactly been, but clearly she felt as though she had. Ah, mothering. You just can't win. How's that for a defeatist attitude? (Insert winking emoticon here.)

Early bed tonight. We only had the one sleep so I'm hoping this isn't interpreted as a late nap.
Getting the blogging done early in case.
There's been a lot of talking lately. Today she was sitting on my lap telling me all about stuff and kept saying Mumma in all the right places. Yay!  That's everyone in the family she's said now.
I really don't think we need to start signing at this point. (Though I'm all for everyone learning to sign. It makes the world accessible to the hearing impaired. Imagine if the elderly all knew how to sign. Oh the hilarious misunderstandings that would never happen - unless you thought someone signed 'tree' instead of 'knee'...)

Definitely time to stop typing. Night!

Thursday 6th March

Have just gone through and re-dated all the previous days in this week. I'm on it now. Clearly some things don't matter when every day is determined by blood counts and days post chemo. In here it's not the 6th March, it's Day 12! (I just realised it's actually Day 12!)

So this morning the doctor I've never actually met came around (she normally hangs at the back and writes down what the big Dr says - whoever's being the big Dr. Sometimes it's the Fellow (who's a lady) and sometimes it's the Consultant (who's also a lady). Pretty much everyone's a lady around here. There's one night Dr who's not a lady. Some of the Dads aren't ladies either. Alright, I haven't seen a Dad who is, but let's not rule it out. I haven't met them all. (And it's not completely outside the realms of possibility in this day and age.)

Anyway, this lady doctor came around and she said we'd be looking at going home today. "Really? Are you sure?" I asked her. I had heard that the Consultant wanted us to stay in and that doesn't normally change. She said she had heard at the morning meeting that we might be going home.
She went to check. I figured maybe the Fellow had misunderstood my question when I asked yesterday, and answered for overnight rather than the rest of the month.

She came back and said that in fact we would be staying the rest of the month. She had it wrong. Oops!
Bugger. Ah well. Maybe there's a chance of getting our own room sometime soon. I heard on the grapevine that the shuffle happens on a Friday. The lady who told me that was discharged today and I know the people next to us are going tomorrow if all goes well.

That's a relief in itself. Due to unfortunate timing, they had visitors who were talking very loudly and playing non-western non-relaxing music at a reasonable volume just as I'd got Jacinta off to sleep for the night and I couldn't transfer her without waking her, which happened. Once she's awake after sleeping, she'll be up for hours. Thus her 7pm bedtime wound up being a 10pm bedtime. There are few things that make me really angry, but having a sleeping child woken up again before their expected sleeping time is over makes me want to slap someone. Quite honestly. I probably wouldn't, but oh I feel like it in theory.

So any trip downstairs for today was cancelled. Any other jobs that needed to get done did not. We treaded water and tried to sleep for a couple of hours until things quieted down over the curtain. By 8.30 it was only the patient who was making noise, but he couldn't sleep. And I couldn't really begrudge him visitors or talking to his Mum, he's been vomiting for the past two days and feeling pretty cruddly from what I've heard.

Ah well, fingers X for that room! At least I got to shower tonight, which was super lovely. How strange to wander through the overnight accommodation area where I would have stayed and, indeed showered, had there been a room the night Jacinta was born. But as we know, the Women's had a room so she went there and I stayed behind. It turned out I could have stayed there while she was in Intensive Care after the heart op too, but found out too late. Never mind.

So, being Day 12, of course we're staying in! Last month she got a fever on Day 14 so that's only Saturday. (Not that we're expecting it to happen exactly the same each month.) They're expecting her counts to stay down for longer this month because they hit them when they were down with the second lot this round. So who knows when they'll come up again? They're on their way to zero at the moment.

I just hope that we make it out in time to spend a few days with the family before they all head off overseas!!  (And it would be nice to see them off to the airport.)

At this rate it looks like we'll be sitting at home while they're overseas and then going back in when they get back, but hopefully we'll time it better.

All speculation. Time for bed.

Friday 7th March

So today was medically uneventful. It's Bactrim day again - we give that on Fri, Sat and Sun. The nurse this morning came in and asked if we were continuing the eye drops. I was quite surprised since the nurse yesterday said "this is the last dose" when we gave them last night. That's what this nurse thought was happening too. Somehow overnight the night nurse had got the idea that Jacinta's eyes were looking red and that we needed to continue the eye drops.

We had the slightly unusual situation here where the 1st year graduate nurse who's been here 8 weeks was on the right page and the well experienced nurse was way off. The grad nurse is a clever young lady, very on the ball. I'd be quite happy to have her all the time. Sometimes night nurses just get stuff wrong. Most stuff ups have happened overnight. I can't sufficiently explain it, but I suspect it's because the head staff are not on so they have to make it up a bit as they go along.

So the best guess I can come up with is that the night nurse accidentally gave Jacinta more eye drops and then had to justify giving them so did this by saying her eyes were a bit red. The thing is, her eyes didn't look a bit red, mostly because they were closed for the duration of her shift!  If the previous nurse had noticed it she didn't say anything to me - and that's not how things are done. They don't secretly change things and not tell you here. They think it might need changing, tell you, go and ask the Dr and then come and tell you what the Dr said and if you disagree, go and get the Dr to tell you herself. (I went to say himself, but then realised there's no point! Odds dictate it's a lady.)

Anyway, no biggie. Clever nurse sorted it out.  Though it does explain how come I heard a shutting door and a very irate Jacinta at about 4am (when the drops would have been due…).

So we had visitors today! Yay! We love visitors. So that was nice. The noisy neighbours were discharged too, which was nice. They were replaced by more noisy neighbours who thankfully have a child still in nappies so the bathroom can be shared, since it's not being used by the children.

I went and introduced myself this time since I didn't want a repeat of last night. I let the Mum know what my plans were for the evening and we apologised in advance for any badness on our part.
I happened to see the person in charge of co-ordinating our "journey" and just asked about the situation with rooms and fullness or emptiness, with reference to my ability to shower in particular. Because I was so nice about it, she made sure the nurse in charge over the weekend knew. This excellent nurse said I was top of her list. Nice to have friends in high places!

So I got Jacinta off to sleep at the earliest realistic bedtime, 6.30. I nearly snuck downstairs about 7pm but thought I'd hold off til she got past the surfacing bit at the end of the first sleep cycle. Lucky I did. About 7.15 a whole bunch of nurses came in to the other patient's half on the other side of the curtain to hang chemotherapy. This takes at least two nurses and there was a Mum and a Dad as well. It sounded like more even, than that. They were all chatting to the patient to try and distract her. And we were awake!

So I rushed over and got her resettled in my arms. Just as that was done, there was the sound of people pleased to see the patient who just got her chemo hung up. It was relatives visiting! Yay! I decided I was NOT having a repeat of last night. I opened the door and headed out the hall and down to the interview room. I closed the door and turned off the light and got to work getting her relaxed and sleeping again. After about 10 minutes I thought it might be safe. Slowly, slowly I snuck back to our room. It was better, but still dicey and she was still jumping a bit here and there, so I stayed holding her on the bed and stroking her arm to give her something to put her attention on so it didn't get pulled away by door sounds or loud comments.

The nurse, who had passed me in the hall earlier came in and found me like this. She went through the curtain, came back, went back outside and came back in. She asked me if I'd like to change rooms right now and I said "yes please!". So we moved. Yay!!!

In the end, Jacinta did rouse and I had to feed her again and get her back to sleep again, but it only took til 9, rather than 10. I could have snuck downstairs had I really wanted to.  So now I can get unpacked and put my suitcase away, go to the toilet whenever I want, have a shower any day and have some control over the environment!

In the defence of the neighbours, the rooms are configured in such a way as to make you feel like you're in your own room, which makes it hard to remember to be quiet when you otherwise would in a shared room or ward. (Like when there's a patient sleeping in the next bed!)

All's well that ends well.

I spoke to the head Dr too, who said that Jacinta is being kept in because of her heart. She is concerned that if something cropped up, any delay might be more harmful because of her heart, so she wants to keep her close just in case. This means therefore that every month we'll be kept in while neutropaenic, and they won't send us home on the off chance. Ah well. At least we know.

Sat 8th March

Today the family came in. Yay! It's been nearly a week since I saw my husband and my eldest. Goodness! We Skype most days, but it's surreal to be in the same room as them.

Medically, it was less eventful than yesterday. We saw the nurse very rarely and only to check her temp, which was fine. I'm taking olive leaf extract for me at the moment to ward off a lurking lurgy and I'm hoping its beneficial properties are filtering through her milk. Certainly she hasn't caught what her sisters have had and which I've been fighting, which is great.

The middlest stayed while the eldest went to a party and Miss J barely got any sleep today. So this evening when it was her bedtime and we were all together again I had to evict the older two to the playroom so she could finally nod off. Loving the single room today. She hasn't thought about waking once.

Tomorrow is Day 14. Last cycle she spiked a fever on Day 14 so I'm touching wood figuratively that she doesn't get one this time. It just means antibiotics, which I like to avoid wherever possible, and that means being stuck to the pole til they're ceased. Fingers X we don't go there this time! Time for an early night, I think!