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….