Monday 12th May
So Jacinta had been looking a bit bruisey the last few days. She had shown up a bunch of petechiae and cut herself somehow on my computer, reopening the wound twice like a warfarin junkie.
When we presented to Day Oncology on Monday she was quite pallid. We had our finger prick blood test in pathology (after waiting in the wrong spot - which the receptionist had indicated - and then after going to the right spot being completely ignored until I realised they were calling the person with the number 4 after ours...grr..) and thankfully I had requested a couple of backup bandaids. Yeah. The first one was needed about 10 minutes later.
Jacinta loves to chew on her bandaids. When you combine teething with low platelets it's a bloodbath, plain and simple. I realised it had come off because there was blood on me. I looked to find Jacinta looking like a vampire, with blood on her sleeve and the legs of her onesie. I got a fresh bandaid on. It came off again. More blood on my shirt and on my keys, on her face. It was getting ridiculous. Fresh bandaid on. Off it came, blood on the chairs. We saw Dr Molly, who agreed it was hilarious, and ordered transfusions of everything without even waiting for the bloods to come back.
We bled again all over the reception desk. Thankfully they had their own supply of fresh bandaids. I got two on this time, which gave us a bit longer. I managed to dispose of the evidence, getting Jacinta into her day clothes after her weigh. (She's putting on weight. Yay!)
So as I suspected we were in for the afternoon for blood products. There's not much that's more mind-numbingly boring than transfusions - unless you have issues with plasma. If you have issues with plasma, transfusions are anything but boring! We do not have issues with plasma.
My middlest managed to entertain herself for 5 hours with very little help from me, which was amazing. My deepest fear when we are there and she goes off to play is that she will get into an argument with one of the sick kids and sock them one in the head. Thankfully, so far, no violence.
She got a lucky dip for being so good. I think she deserved it.
The good thing about Day Oncology is they go home at 6.30, which means, so do you! They'll cut it as short as possible to make sure everyone gets out the door on time. No "I'll just run the flush a bit longer while I find out what's happening....". Nope! We're on top of things.
So it seems our neutrophils are at .73. This means we could theoretically start chemo if we had to. We can't yet because we're only at Day 14 or so, so we don't know if we're going down still or coming back up. It would appear, since we needed platelets, that we are going down. I guess we keep away from the sneezers and the coughers now. Fingers X that's the only transfusion for this round, no temps and back in on 26th. Fingers X.....
Tuesday, 13 May 2014
Week 15 Diary Luke Aemia
Monday 5th May
So I've skipped Sunday because nothing much happened medically and we had an appointment on Monday - or so the piece of paper said.
In actual fact we got there after going via pathology and having bloods done only to find that the appointment should have been for Wednesday. There had been much changing of minds in the admin/doctor area the previous week and they had booked and rebooked the Wednesday appointment. My sheet said the Wed had been cancelled and my appt was Mon. In fact that Mon had been cancelled and Wed rebooked. No matter, we saw Dr Molly anyway. We love Dr Molly.
Jacinta's white blood cells (neutrophils in particular) had gone up, which is interesting, to a super nice level. (About 3.0) So no need to avoid Chadstone that day.
We started thinking about how the next round might roll out. Dr Molly showed me the protocol which is 7 days' continuous infusion (yuck!) of something toxic with 3 days' continuous infusion at the beginning of that 7 of something else toxic. (Two at once for the first few days.)
Dr Molly seemed to think that we might have to be in for the days where we had two running. Hmmm. I guess we'll see. If nothing goes awry, we're looking at 26th May for this. The rest can be done at home I believe.
Tues 6th - Sat 10th May
One long week of having a yucky fluey thing and teething. Jacinta's been fine in terms of hospital admission parameters. Managed fine (not enjoying though) with the flu/cold. No temps to speak of.
Next appointment Monday.
So I've skipped Sunday because nothing much happened medically and we had an appointment on Monday - or so the piece of paper said.
In actual fact we got there after going via pathology and having bloods done only to find that the appointment should have been for Wednesday. There had been much changing of minds in the admin/doctor area the previous week and they had booked and rebooked the Wednesday appointment. My sheet said the Wed had been cancelled and my appt was Mon. In fact that Mon had been cancelled and Wed rebooked. No matter, we saw Dr Molly anyway. We love Dr Molly.
Jacinta's white blood cells (neutrophils in particular) had gone up, which is interesting, to a super nice level. (About 3.0) So no need to avoid Chadstone that day.
We started thinking about how the next round might roll out. Dr Molly showed me the protocol which is 7 days' continuous infusion (yuck!) of something toxic with 3 days' continuous infusion at the beginning of that 7 of something else toxic. (Two at once for the first few days.)
Dr Molly seemed to think that we might have to be in for the days where we had two running. Hmmm. I guess we'll see. If nothing goes awry, we're looking at 26th May for this. The rest can be done at home I believe.
Tues 6th - Sat 10th May
One long week of having a yucky fluey thing and teething. Jacinta's been fine in terms of hospital admission parameters. Managed fine (not enjoying though) with the flu/cold. No temps to speak of.
Next appointment Monday.
Wednesday, 30 April 2014
Week 14 Diary Luke Aemia
Sun 27th - Mon 28th April
Nothing much happened. Jacinta had a bit of trouble sleeping, quite unsettled so spent both nights in with me, feeding every hour or so, which was a bit exhausting. Teeth do seem to be on the horizon.
Tues 29th-Wed 30th April
So, in a flash, admission day had come around.
We said goodbye to my eldest and middlest, at school and kinder drop-off respectively. Then we headed in to the hospital for our 10:10am appointment. We managed to find a park, probably one of the last 20 or so. Had we been 10 minutes later I think we would have struggled to get one.
We headed straight up to Day Oncology for our appointment with the Oncology Consultant. She was running pretty late. We didn't get in with her until at least 11.00. Quick visit there, a double-check that we could have most non-chemo things orally to avoid any stopping of the chemo, and then to get blood taken before we started. She couldn't sign off on the order for chemo without bloods from that day. Had I realised I'd have done them first! She also asked me again to chat to another family who had a little baby starting our chemo protocol for AML, because Jacinta had done so well. She commented that Jacinta's kind of the poster girl for this protocol. She was really impressed at how well Jacinta's been throughout the treatment.
So we got the bloods taken and a dressing change etc then went off to eat before we were hooked up. The bloods took a while to process so it was about 1.30 when they finally came through with the packs and got us hooked up. This means we won't be making it to the start of the wedding reception on Saturday, but we're still going for making it for some of it!
We hung out in Day Oncology, chatting with friends we'd made in earlier stays on the ward. It's one of the silver linings to being in the cancer ward, that you make so many friends that you're never short of someone to talk to whether you're on the ward or in Day Oncology. Remembering their names is another story, but you can usually remember their diagnoses & prognoses!
The nurse came in to revise an earlier estimate that we'd be on Kookaburra ward around 3pm. We wouldn't. It'd be later. It occurred to me upon writing this that there would be some people who'd demand to know when they'd be in their room and why it was taking so long. Almost in the same thought though, I realised that it wouldn't be any of the parents who've been on the ward. One thing you get used to, if you aren't already, is that you just can't plan. As soon as one thing is a dead certainty, it's almost sure to change. It's not always for the worse that the unexpected happens, but it just means that you can't plan. There's never a 100% chance. Mind you, there never actually is anyway....
One by one people left and the nurse showed us a separate room with a cot that I could put Jacinta down in and not have to hold her all the time. Things got pretty quiet, Ben and Holly's Magic Kingdom came and went from the TV and I took to walking around outside our room again, gently jogging their memory that we were still there, in case our being tucked away in a different room had made us slip their minds. Around 6pm the nurse came in and said that by the time they were ready to go home at 6.30 someone from Kookaburra would be around to collect us. I queried dinner and we got some snack boxes out of the fridge. Loaded with gluten and dairy, as so many of the things in hospital are, I managed to get some ham into Jacinta. (Salt - oh well.)
We had managed to eat a bit when the nurse came to collect us. Its nice that we know all the nurses now. Every time someone comes on at a change of shift or collects us from somewhere, it's a little blast-from-the-past moment. I think they still get excited when they get to look after Jacinta.
So we're over the hurdle now of coming back in to where we don't want to be. Now we just have to sit out the chemo. The strange thing is that this could possibly be our last admission. If Jacinta does what she did last time, she won't hit 0 neutrophils or anywhere near it, and she won't need to stay in hospital. So we've said goodbye to a couple of people and there's a chance we might not stay with them in hospital ever again....how strange. Of course, you can't plan, so there's as much a chance of that as there is of my being struck by lightning or of our car turning into an orange.
Today we just did the being on chemo thing. Stuck to the pole. Still, it was Wednesday so there was my middlest and she had kinder and there was music group and we had a lovely visitor so the day flew.
Early to bed was good so I'm hoping to get a little sleep before the waking begins....
Thurs 1st - Sat 3rd May
Well, not much happened for the next few days. The chemo kept going, for 96 hours straight. We had a shared room which was good for Wed since there was another small child there and we could share the play mat in the space between the rooms, but they went home that afternoon and we got a new roommate.
Once you've shared a bit, your requirements for a good neighbour become few.
a) No music playing all night on their side of the curtain.
b) No loud visitors at 7.30pm
c) No big groups of people laughing and joking like you're not sitting right on the other side of the curtain...
d) Keeping the telly to a reasonable volume so you can feasibly sleep on the other side of the room if need be.
The thing with these shared rooms is that they are in reality one space divided down the middle by a curtain on your side and a curtain on their side. There's a small no-man's land between which leads to the shared bathroom. It's deceptive. It appears as though you're in your own room with a door to the bathroom. You're not. You can hear every single thing that goes on across the curtain. You can hear them talking about you. You can hear their discussions about the footy. You can hear them talking about their diagnosis - again. You can hear them recount the story of their visit to the sperm bank - again. You can even hear them talking about how the nurses love them and how they have everyone wrapped around their little finger.....if only the nurses knew, wouldn't they have something to say!
All in all, our neighbours for the last few days were pretty good. I could tell they were trying to be quiet. I did hear the patient saying he thought they were noisier than us at one point, when a nurse or doctor was asking how he was going in the room, which was reassuring. It was fascinating to talk to his mum in the tea room, hear how he had all the nurses in stitches half the time and how bright he was and how well he was taking it all. Then I'd hear him telling his visitors himself about how his heart scan had shown up that it was made of gold - and how the nurses had all loved that and talked about it for days.
He seemed to think he was the most popular patient on the ward. Oh yes? Really?
(You clearly haven't been around long, young man....)
It was most fascinating of all when I would pass his room and he would look right through me like I wasn't there. He was chatty and upbeat with his visitors, and he could hear me, and I could hear him. There were no secrets. He had told someone that I got along well with his mum at one point so I know he knew I was up for a chat. Still, the few times I went past, it was a surly sour look on his face. Not a smile, not a wave, not a "hi". Nothing.
I imagine that was testament to how hard he was actually working to take care of everyone around him. Nothing in reserve. He did actually comment to one visitor that they wanted to move him to be in a room with another teenager so they could socialise a bit, but he preferred to be with us. He didn't want to be socialising with anyone. Just diagnosed, I can understand. When you're doing Year 12, working nights, playing basketball and you suddenly get hit with leukaemia, how the hell do you process that? (I really did hear everything on the other side of the curtain!)
So anyway, we were entertained by our neighbours for the last few days, and counting down the days til the wedding. The UK wedding party for Australia happened on the Saturday and we were hoping to get out as fast as possible to make it for as much as poss. They rushed it as much as they could, but we didn't get off the pump til about 4pm which got us out of there close to 5pm and to the farm by 6pm. We made it for the company, if not the actual event. Better than the last one!
So that discharge was touted as the final scheduled discharge, which is very exciting. I guess we'll see how things go.
Well, not much happened for the next few days. The chemo kept going, for 96 hours straight. We had a shared room which was good for Wed since there was another small child there and we could share the play mat in the space between the rooms, but they went home that afternoon and we got a new roommate.
Once you've shared a bit, your requirements for a good neighbour become few.
a) No music playing all night on their side of the curtain.
b) No loud visitors at 7.30pm
c) No big groups of people laughing and joking like you're not sitting right on the other side of the curtain...
d) Keeping the telly to a reasonable volume so you can feasibly sleep on the other side of the room if need be.
The thing with these shared rooms is that they are in reality one space divided down the middle by a curtain on your side and a curtain on their side. There's a small no-man's land between which leads to the shared bathroom. It's deceptive. It appears as though you're in your own room with a door to the bathroom. You're not. You can hear every single thing that goes on across the curtain. You can hear them talking about you. You can hear their discussions about the footy. You can hear them talking about their diagnosis - again. You can hear them recount the story of their visit to the sperm bank - again. You can even hear them talking about how the nurses love them and how they have everyone wrapped around their little finger.....if only the nurses knew, wouldn't they have something to say!
All in all, our neighbours for the last few days were pretty good. I could tell they were trying to be quiet. I did hear the patient saying he thought they were noisier than us at one point, when a nurse or doctor was asking how he was going in the room, which was reassuring. It was fascinating to talk to his mum in the tea room, hear how he had all the nurses in stitches half the time and how bright he was and how well he was taking it all. Then I'd hear him telling his visitors himself about how his heart scan had shown up that it was made of gold - and how the nurses had all loved that and talked about it for days.
He seemed to think he was the most popular patient on the ward. Oh yes? Really?
(You clearly haven't been around long, young man....)
It was most fascinating of all when I would pass his room and he would look right through me like I wasn't there. He was chatty and upbeat with his visitors, and he could hear me, and I could hear him. There were no secrets. He had told someone that I got along well with his mum at one point so I know he knew I was up for a chat. Still, the few times I went past, it was a surly sour look on his face. Not a smile, not a wave, not a "hi". Nothing.
I imagine that was testament to how hard he was actually working to take care of everyone around him. Nothing in reserve. He did actually comment to one visitor that they wanted to move him to be in a room with another teenager so they could socialise a bit, but he preferred to be with us. He didn't want to be socialising with anyone. Just diagnosed, I can understand. When you're doing Year 12, working nights, playing basketball and you suddenly get hit with leukaemia, how the hell do you process that? (I really did hear everything on the other side of the curtain!)
So anyway, we were entertained by our neighbours for the last few days, and counting down the days til the wedding. The UK wedding party for Australia happened on the Saturday and we were hoping to get out as fast as possible to make it for as much as poss. They rushed it as much as they could, but we didn't get off the pump til about 4pm which got us out of there close to 5pm and to the farm by 6pm. We made it for the company, if not the actual event. Better than the last one!
So that discharge was touted as the final scheduled discharge, which is very exciting. I guess we'll see how things go.
Tuesday, 22 April 2014
Week 13 Diary Luke Aemia
Sun 20th - Tues 22nd April.
Sunday morning we woke up and Jacinta was feeling a bit hot. She had been under the covers with me and in very warm clothes, but felt hotter still than that. I got out the thermometer. 37 degrees. Hmmm....
We'd got this far and I certainly didn't feel like suddenly rushing in to the hospital on Easter morning and relocating lunch in to the hospital, like a big cliche, and causing everyone so much trouble. (They had planned for this eventuality, it being my birthday also and guest of honour - sort of - but I wanted to avoid it at all costs.)
I took off a lot of Jacinta's clothing (it's not my colour anyway....) and we carried on as usual, getting ready. By the time we got to lunch she was feeling a much better temperature. It's funny when you're dealing with temps a lot, you can really feel a 37 from a 37.5 from a 38. Cool skill to have when you're tempering chocolate without a confectioner's thermometer.
Monday was fairly uneventful. So uneventful in fact was it that I cannot remember a single thing that happened in terms of her physical state etc.
Tuesday was her appointment for echocardiogram, bloods, wound care and maybe doctor. Everything was pretty straightforward. The hospital was comparatively empty - possibly everyone was still hung over from the Good Friday Appeal.
We ran in to the nurse co-ordinator who told us that her blood results from Saturday were 'awesome' and that we could start the chemo as planned next Tuesday. Everything as expected. Poor Jacinta, when she's older, if she's not getting 'amazing' or 'awesome' on every school report, there'll be trouble!! She's setting the bar pretty high for herself.
We popped in to the ward to see our good friends. It was nice to hang out for a bit and not get poked or prodded or kept upstairs for days on end. So we're out for another week, health permitting (though by the sounds of those awesome bloods I think we'll have no trouble with infections).
One thing I'm dealing with at the moment which is very weird is my memory. It's extremely faulty. The other day I got in my car to meet up with my husband across town. I went to start the car and found that turning the key was achieving nothing. The lights were fine and the radio was fine. There was nothing going on when I turned that key. I couldn't work it out. Usually when the battery's had it you get nothing, or if the lights etc are working you get a feeble attempt from the car's engine. This was chalk and cheese.
I rang my husband and told him I couldn't get it started. It was a few minutes of debate about calling the RACV or having him come back and jump start us, when I mentioned that I felt like I was forgetting something and he asked me if I'd pressed the immobiliser button that is with the keys, which you have to press every single time you start the car. Ten seconds later we were on our way.
Then last night we were at another family birthday, just about to leave when I realised that there had been talk of my quartet rehearsing that very night and that there had probably been discussion about it all day on facebook with me conspicuously absent, and I had completely forgotten all about it and even left my phone at home. I got home to several missed calls and messages re the rehearsal that hadn't happened. Must remember tomorrow...must remember tomorrow....
We forgot ballet this afternoon too.....
We'll get there!
Wed 23rd-Sat 27th April.
Nothing much happened.
Sunday morning we woke up and Jacinta was feeling a bit hot. She had been under the covers with me and in very warm clothes, but felt hotter still than that. I got out the thermometer. 37 degrees. Hmmm....
We'd got this far and I certainly didn't feel like suddenly rushing in to the hospital on Easter morning and relocating lunch in to the hospital, like a big cliche, and causing everyone so much trouble. (They had planned for this eventuality, it being my birthday also and guest of honour - sort of - but I wanted to avoid it at all costs.)
I took off a lot of Jacinta's clothing (it's not my colour anyway....) and we carried on as usual, getting ready. By the time we got to lunch she was feeling a much better temperature. It's funny when you're dealing with temps a lot, you can really feel a 37 from a 37.5 from a 38. Cool skill to have when you're tempering chocolate without a confectioner's thermometer.
Monday was fairly uneventful. So uneventful in fact was it that I cannot remember a single thing that happened in terms of her physical state etc.
Tuesday was her appointment for echocardiogram, bloods, wound care and maybe doctor. Everything was pretty straightforward. The hospital was comparatively empty - possibly everyone was still hung over from the Good Friday Appeal.
We ran in to the nurse co-ordinator who told us that her blood results from Saturday were 'awesome' and that we could start the chemo as planned next Tuesday. Everything as expected. Poor Jacinta, when she's older, if she's not getting 'amazing' or 'awesome' on every school report, there'll be trouble!! She's setting the bar pretty high for herself.
We popped in to the ward to see our good friends. It was nice to hang out for a bit and not get poked or prodded or kept upstairs for days on end. So we're out for another week, health permitting (though by the sounds of those awesome bloods I think we'll have no trouble with infections).
One thing I'm dealing with at the moment which is very weird is my memory. It's extremely faulty. The other day I got in my car to meet up with my husband across town. I went to start the car and found that turning the key was achieving nothing. The lights were fine and the radio was fine. There was nothing going on when I turned that key. I couldn't work it out. Usually when the battery's had it you get nothing, or if the lights etc are working you get a feeble attempt from the car's engine. This was chalk and cheese.
I rang my husband and told him I couldn't get it started. It was a few minutes of debate about calling the RACV or having him come back and jump start us, when I mentioned that I felt like I was forgetting something and he asked me if I'd pressed the immobiliser button that is with the keys, which you have to press every single time you start the car. Ten seconds later we were on our way.
Then last night we were at another family birthday, just about to leave when I realised that there had been talk of my quartet rehearsing that very night and that there had probably been discussion about it all day on facebook with me conspicuously absent, and I had completely forgotten all about it and even left my phone at home. I got home to several missed calls and messages re the rehearsal that hadn't happened. Must remember tomorrow...must remember tomorrow....
We forgot ballet this afternoon too.....
We'll get there!
Wed 23rd-Sat 27th April.
Nothing much happened.
Monday, 14 April 2014
Week 12 Diary Luke Aemia
Sunday 13th April
So today was a bit better in terms of sleeping. There were no bloods taken, since they figured there was no need. My husband had to do work so I took the girls out to the zoo for the afternoon. It was fun and they got very tired, although they were still very good.
Jacinta only got to sleep about 4pm in the end, because every time she was nearly asleep something woke her. Maria came again today and on top of the usual cancer things did kidney and bladder. Her wee had been pink in the morning and showed leukocytes and I didn't think to mention it to Maria but true to form, she seems to have just known and treated her for it anyway. (Most likely cause of leukocytes in the wee is bladder infection.)
Back on Saturday the head of Oncology came past and said that they might change her treatment approach in terms of whether we're in or out. It must not have escaped her notice that we've spent the last week in hospital doing nothing much. She said that we'd be allowed to go home more and not worry so much about her getting sick, since she's been handling it all so well.
Today I clarified that with the Fellow, who said that the timeframe she was talking about was within courses. Normally we just stay in for the whole month and have a break between rounds if she's healthy. She said that if we'd known we could have gone home this round, but that it's too late this round and we'll have to wait til next time. Oh well, the upside is it means this is most likely the last long stay we'll have to do and once she's gone down and come back up we'll be doing short stays, more like a week or two at the most. Much better!!
Mon 14th April
There's a helicopter being noisy above me at the moment. This is the fourth or fifth in two days that I've noticed. Normally I don't notice them much at all. I don't know if it's really busy up there or if I've just started noticing them all. The security guard I spoke to a couple of weeks ago mentioned that there were a couple on average every day. I'm not sure which class of patient comes in by helicopter. Obviously acutely ill from far away, but I'm not sure exactly how acutely ill or how far away. Actually I recall a story of someone I'm acquainted with being brought in here by chopper after a boating accident that pretty much took his leg off. I guess that's one.
Anyway, this is school holidays and I've got all three girls in here, at my request. I see so little of my eldest, and having had them away for the last two weeks, I think we need time to get properly sick of each other!
My husband needs to get a lot of work and study done this week and we were working out how to accomplish all this. I decided to utilise the Ronald McDonald House. I found out about this when Jacinta had her heart done - on the day she moved from Intensive Care to the ward, which meant I didn't need the room they found for me in the end. (You can't stay over in intensive care, so for a breastfeeding mum it's much easier to be nearby than waste hours on travel and be travelling in the dark, late at night etc.)
I had thought it was only for interstate or international visitors etc but I found out last time that locals can stay there if they have the need. I think priority goes to those who are in the above category but they have enough rooms to help out those who are from here too. So I've got them all tucked away in there for the night, which means my husband can do work from there if he needs and drop them here early and come and go however he needs to. We'll only be there a couple of nights, but it's so good to have as a backup.
There was a moment this afternoon when I asked what Jacinta'a counts were - doing the right thing by the doctors if we were going to leave the hospital. The nurse mused on this, reasoning that if she was still at 0.....
I said, "what? was she at 0??" and she had a look on the computer.
"No, she's at 2.2!", she said.
"Really???" I queried. It's a bit early for her to be going up again.
"Oh, no, she's at .43"
"That means she's neutropaenic then. But we've been sent home at .3 before so it's probably fine. We'll just go."
"No wait on, I'll check......"
I thought I'd done my dash and I was not going to make it to "Ronald Mac"(as the peeps in the know call it) to get that room set up after all.
The music therapist came in, and did one of the noisiest music therapy sessions on record, featuring not one, but two vocal solos by my middlest. (Incy Wincy Spider and Let It Go - from Frozen) The boy from the next room found it all a bit much when all the percussion instruments were going at once in the tiny room and had to go for a sleep. It was crazy! I think the music therapist secretly loved it.
In the end we had the thumbs up - literally, there was singing going on, to go to Ronald Mac. I don't know how long this will last though. I suspect this might have been our last day.
I guess we'll see! (The sooner we get neutropaenia, the sooner we come back up, the sooner we get out of here!!!)
Tues 15th April
Well! That was interesting. Going on yesterday's numbers we had ok to roam upstairs to the Heartkids (the charity that supports the families of children with heart conditions) morning tea. My eldest and middlest scored a trip downstairs to the Starlight Express Room and playground with an adult who was willing to take them. (Ok, I would have taken them eventually…) We had loose plans to go to the zoo again today but the afternoon seemed to look after itself.
I had just managed to get Miss J asleep about 2pm and the blood nurse arrived within half an hour to take a finger prick test. We didn't manage to stay asleep for it this time! Not only were we not impressed but we also got our bandaid off, which has quite spectacular results when your platelets are low. Second bandaid came right off. Third bandaid consisted of a bandaid around it, a bandaid over the top and elastoplast around the whole thing to keep it in place.
My very kind friend who owns her own cafe and is a pastry chef brought us in some special treats and we had visitors who were kindly willing to help us sample them. Just after this late-ish afternoon tea, the doctor found me and asked if I'd heard the final blood results. I hadn't. He said her neutrophils were at 1.0. I asked him to repeat that. He said they were at 1.0. I asked if they had gone up. He said they had. I asked if this was ok. He said it was. I asked if this meant that the treatment was working if they hadn't hit zero. He said they weren't plummeting but going down and then up and that was ok. I asked if theoretically they never made it to zero and came back up again if that was ok. He said that since everything else was crashing - including white cells, including lymphocytes in particular - it was totally fine for her neutrophils to stay up.
He said that if they stayed up we might get to go home…..!!!
He gave me a printout and I saw that the platelets had only dropped by a couple of points, which means she's making platelets, when she had less than 10 the other day. I'm not completely sure, but this could mean we're skipping neutropaenia this round. Tomorrow will tell I guess. Fingers X!
Wed 16th April
And tomorrow says……yes!
Well, we're not sure if we're skipping neutropaenia for absolutely certain, but the platelets are improving slightly and the neutrophils are doing a little jig on the spot so we're guessing things are moving in the right direction. (And it's nearly Easter and we want to clear the ward for the long weekend and, hey it might be a cold coming on, but if she's got counts it's all good so hey, go home.)
It is interesting actually to note the difference in attitude when they are trying to get you out of the ward. In their defence it's as much for our sake as any administrative reasons that they would want us to go, but where a couple of weeks ago we were locked down and not moving for love nor money and we were watching any sign of an illness like a hawk, this time it's seemingly no biggie.
I'm interested also that no-one is directly answering my question when I've asked how often patients skip the part where they're in hospital with no neutrophils, getting a fever and waiting on their counts to go up. "She's certainly doing very well", is the general response. I wonder why it's such a secret.
Anyway, she did have lowish haemoglobin so we had some of that before we were discharged. We're also having two whole weeks off. The next round is due to start on 1st May but they're starting it early to see if we can make it out for the Australian leg of the International Wedding Tour. Never any guarantees but the nurse co-ordinator is willing to give it a crack.
I also remembered what the date was and that there would be a family gathering for a birthday, so we called in there on the way home. It was nice just to relax and have a cup of tea with my dear siblings before going on. No-one's really arrived home properly. The suitcases are still sitting around and it seems someone was baking before they left home on Monday….
Thursday 17th April
So, it's our first day at home today, and we went shopping. The fridge was awfully bare when we got up this morning.
I didn't realise what the date was until tonight, but it's actually a year today since Jacinta had her heart operated on. I just re-read my post from that surgery. How lucky we have been, indeed. I guess no-one will look back on the litany of procedures and think of it all as great luck, but in the scheme of things, she's done so very well. The heart op was supposed to be very difficult to recover from, but she did just fine.
This chemo was meant to knock her around a lot, but the worst she's had is some fluid overload and a really nasty nappy rash. No vomiting, no real nausea to speak of. No weight loss, meaning no nasogastric tube. We've had no one thing that's sent us spiralling downwards. Most recently, she's even skipped the bit where she gets put on antibiotics for a week, which gives her diarrhoea and means she can't leave the ward. None of that. Going home instead!
So on this day last year we were all completely exhausted and drained. It was done, she was recovering and we were about to meet some of the most amazing people, with equally amazing children. One of those parents, whose child grew his angel wings last September, has been reliving the past year day by day as she ticks off the events that happened on each calendar date last year. Since the start of this year I have been doing the same, though with a different viewpoint. My child is still here, and every day I try to fathom exactly how it has all unfolded and marvel in the difference between where we are and where we thought we'd be. This year has had many points where everything stopped and changed direction.
Tomorrow is the anniversary of our first conversation and where our reminiscent timelines connect. It's a privilege to have shared this year with them. This whole year has been a privilege, full stop.
Friday 18th April
It's Good Friday today, the biggest day in the hospital calendar. If you have to be in the Children's on any day of the year, so long as you're moderately sick and not wishing for silence and privacy, today is the day. It goes off. I'd take being at home over the most entertaining Good Friday any day though. I'm sure if we were in it'd be fun-ish, but wishing we were home.
They took footage of Jacinta a few weeks ago and said if it was used it'd be on between 5-6pm. We managaed to get the broken TV working in most of the screen (cracked LCD) and taped it to watch later. In the end I found out from my brother that there were a couple of seconds of her about 9pm! Ah well, I'm sure the people of Melbourne enjoyed it.
She's hanging out, looking very healthy. I actually remembered her meds today - and I just realised I forgot her second dose of one of them.....oops! They're all preventative so a skipped dose isn't going to kill anyone. Still, it is best to give them as prescribed!! That one I'll have to give a dose on Monday.
Bloods tomorrow, so we'll see where we're at!
Sat 19th April
The blood nurse came today and took some blood. Very straightforward. The nurse co-ordinator had mentioned that I'd have to pretend like we needed to weigh and check fluids etc to justify the blood test being done at home. It eventuated that I asked if we needed to do a weigh and the nurse asked why we needed to!
Everything's all pretty fine. A bit of sticky poo at the moment so I'll have to watch my diet again. At least at home going completely dairy and gluten free is possible without starvation. We're trying lactose-free milk (which I think is actually lactase-added milk, rather than lactose-free...) to see if that makes a difference to anything. We'll see!
From here on out, since our treatment will be very patchy and rarely two days in a row, I'll just blog when things happen, every few days or so.
So today was a bit better in terms of sleeping. There were no bloods taken, since they figured there was no need. My husband had to do work so I took the girls out to the zoo for the afternoon. It was fun and they got very tired, although they were still very good.
Jacinta only got to sleep about 4pm in the end, because every time she was nearly asleep something woke her. Maria came again today and on top of the usual cancer things did kidney and bladder. Her wee had been pink in the morning and showed leukocytes and I didn't think to mention it to Maria but true to form, she seems to have just known and treated her for it anyway. (Most likely cause of leukocytes in the wee is bladder infection.)
Back on Saturday the head of Oncology came past and said that they might change her treatment approach in terms of whether we're in or out. It must not have escaped her notice that we've spent the last week in hospital doing nothing much. She said that we'd be allowed to go home more and not worry so much about her getting sick, since she's been handling it all so well.
Today I clarified that with the Fellow, who said that the timeframe she was talking about was within courses. Normally we just stay in for the whole month and have a break between rounds if she's healthy. She said that if we'd known we could have gone home this round, but that it's too late this round and we'll have to wait til next time. Oh well, the upside is it means this is most likely the last long stay we'll have to do and once she's gone down and come back up we'll be doing short stays, more like a week or two at the most. Much better!!
Mon 14th April
There's a helicopter being noisy above me at the moment. This is the fourth or fifth in two days that I've noticed. Normally I don't notice them much at all. I don't know if it's really busy up there or if I've just started noticing them all. The security guard I spoke to a couple of weeks ago mentioned that there were a couple on average every day. I'm not sure which class of patient comes in by helicopter. Obviously acutely ill from far away, but I'm not sure exactly how acutely ill or how far away. Actually I recall a story of someone I'm acquainted with being brought in here by chopper after a boating accident that pretty much took his leg off. I guess that's one.
Anyway, this is school holidays and I've got all three girls in here, at my request. I see so little of my eldest, and having had them away for the last two weeks, I think we need time to get properly sick of each other!
My husband needs to get a lot of work and study done this week and we were working out how to accomplish all this. I decided to utilise the Ronald McDonald House. I found out about this when Jacinta had her heart done - on the day she moved from Intensive Care to the ward, which meant I didn't need the room they found for me in the end. (You can't stay over in intensive care, so for a breastfeeding mum it's much easier to be nearby than waste hours on travel and be travelling in the dark, late at night etc.)
I had thought it was only for interstate or international visitors etc but I found out last time that locals can stay there if they have the need. I think priority goes to those who are in the above category but they have enough rooms to help out those who are from here too. So I've got them all tucked away in there for the night, which means my husband can do work from there if he needs and drop them here early and come and go however he needs to. We'll only be there a couple of nights, but it's so good to have as a backup.
There was a moment this afternoon when I asked what Jacinta'a counts were - doing the right thing by the doctors if we were going to leave the hospital. The nurse mused on this, reasoning that if she was still at 0.....
I said, "what? was she at 0??" and she had a look on the computer.
"No, she's at 2.2!", she said.
"Really???" I queried. It's a bit early for her to be going up again.
"Oh, no, she's at .43"
"That means she's neutropaenic then. But we've been sent home at .3 before so it's probably fine. We'll just go."
"No wait on, I'll check......"
I thought I'd done my dash and I was not going to make it to "Ronald Mac"(as the peeps in the know call it) to get that room set up after all.
The music therapist came in, and did one of the noisiest music therapy sessions on record, featuring not one, but two vocal solos by my middlest. (Incy Wincy Spider and Let It Go - from Frozen) The boy from the next room found it all a bit much when all the percussion instruments were going at once in the tiny room and had to go for a sleep. It was crazy! I think the music therapist secretly loved it.
In the end we had the thumbs up - literally, there was singing going on, to go to Ronald Mac. I don't know how long this will last though. I suspect this might have been our last day.
I guess we'll see! (The sooner we get neutropaenia, the sooner we come back up, the sooner we get out of here!!!)
Tues 15th April
Well! That was interesting. Going on yesterday's numbers we had ok to roam upstairs to the Heartkids (the charity that supports the families of children with heart conditions) morning tea. My eldest and middlest scored a trip downstairs to the Starlight Express Room and playground with an adult who was willing to take them. (Ok, I would have taken them eventually…) We had loose plans to go to the zoo again today but the afternoon seemed to look after itself.
I had just managed to get Miss J asleep about 2pm and the blood nurse arrived within half an hour to take a finger prick test. We didn't manage to stay asleep for it this time! Not only were we not impressed but we also got our bandaid off, which has quite spectacular results when your platelets are low. Second bandaid came right off. Third bandaid consisted of a bandaid around it, a bandaid over the top and elastoplast around the whole thing to keep it in place.
My very kind friend who owns her own cafe and is a pastry chef brought us in some special treats and we had visitors who were kindly willing to help us sample them. Just after this late-ish afternoon tea, the doctor found me and asked if I'd heard the final blood results. I hadn't. He said her neutrophils were at 1.0. I asked him to repeat that. He said they were at 1.0. I asked if they had gone up. He said they had. I asked if this was ok. He said it was. I asked if this meant that the treatment was working if they hadn't hit zero. He said they weren't plummeting but going down and then up and that was ok. I asked if theoretically they never made it to zero and came back up again if that was ok. He said that since everything else was crashing - including white cells, including lymphocytes in particular - it was totally fine for her neutrophils to stay up.
He said that if they stayed up we might get to go home…..!!!
He gave me a printout and I saw that the platelets had only dropped by a couple of points, which means she's making platelets, when she had less than 10 the other day. I'm not completely sure, but this could mean we're skipping neutropaenia this round. Tomorrow will tell I guess. Fingers X!
Wed 16th April
And tomorrow says……yes!
Well, we're not sure if we're skipping neutropaenia for absolutely certain, but the platelets are improving slightly and the neutrophils are doing a little jig on the spot so we're guessing things are moving in the right direction. (And it's nearly Easter and we want to clear the ward for the long weekend and, hey it might be a cold coming on, but if she's got counts it's all good so hey, go home.)
It is interesting actually to note the difference in attitude when they are trying to get you out of the ward. In their defence it's as much for our sake as any administrative reasons that they would want us to go, but where a couple of weeks ago we were locked down and not moving for love nor money and we were watching any sign of an illness like a hawk, this time it's seemingly no biggie.
I'm interested also that no-one is directly answering my question when I've asked how often patients skip the part where they're in hospital with no neutrophils, getting a fever and waiting on their counts to go up. "She's certainly doing very well", is the general response. I wonder why it's such a secret.
Anyway, she did have lowish haemoglobin so we had some of that before we were discharged. We're also having two whole weeks off. The next round is due to start on 1st May but they're starting it early to see if we can make it out for the Australian leg of the International Wedding Tour. Never any guarantees but the nurse co-ordinator is willing to give it a crack.
I also remembered what the date was and that there would be a family gathering for a birthday, so we called in there on the way home. It was nice just to relax and have a cup of tea with my dear siblings before going on. No-one's really arrived home properly. The suitcases are still sitting around and it seems someone was baking before they left home on Monday….
Thursday 17th April
So, it's our first day at home today, and we went shopping. The fridge was awfully bare when we got up this morning.
I didn't realise what the date was until tonight, but it's actually a year today since Jacinta had her heart operated on. I just re-read my post from that surgery. How lucky we have been, indeed. I guess no-one will look back on the litany of procedures and think of it all as great luck, but in the scheme of things, she's done so very well. The heart op was supposed to be very difficult to recover from, but she did just fine.
This chemo was meant to knock her around a lot, but the worst she's had is some fluid overload and a really nasty nappy rash. No vomiting, no real nausea to speak of. No weight loss, meaning no nasogastric tube. We've had no one thing that's sent us spiralling downwards. Most recently, she's even skipped the bit where she gets put on antibiotics for a week, which gives her diarrhoea and means she can't leave the ward. None of that. Going home instead!
So on this day last year we were all completely exhausted and drained. It was done, she was recovering and we were about to meet some of the most amazing people, with equally amazing children. One of those parents, whose child grew his angel wings last September, has been reliving the past year day by day as she ticks off the events that happened on each calendar date last year. Since the start of this year I have been doing the same, though with a different viewpoint. My child is still here, and every day I try to fathom exactly how it has all unfolded and marvel in the difference between where we are and where we thought we'd be. This year has had many points where everything stopped and changed direction.
Tomorrow is the anniversary of our first conversation and where our reminiscent timelines connect. It's a privilege to have shared this year with them. This whole year has been a privilege, full stop.
Friday 18th April
It's Good Friday today, the biggest day in the hospital calendar. If you have to be in the Children's on any day of the year, so long as you're moderately sick and not wishing for silence and privacy, today is the day. It goes off. I'd take being at home over the most entertaining Good Friday any day though. I'm sure if we were in it'd be fun-ish, but wishing we were home.
They took footage of Jacinta a few weeks ago and said if it was used it'd be on between 5-6pm. We managaed to get the broken TV working in most of the screen (cracked LCD) and taped it to watch later. In the end I found out from my brother that there were a couple of seconds of her about 9pm! Ah well, I'm sure the people of Melbourne enjoyed it.
She's hanging out, looking very healthy. I actually remembered her meds today - and I just realised I forgot her second dose of one of them.....oops! They're all preventative so a skipped dose isn't going to kill anyone. Still, it is best to give them as prescribed!! That one I'll have to give a dose on Monday.
Bloods tomorrow, so we'll see where we're at!
Sat 19th April
The blood nurse came today and took some blood. Very straightforward. The nurse co-ordinator had mentioned that I'd have to pretend like we needed to weigh and check fluids etc to justify the blood test being done at home. It eventuated that I asked if we needed to do a weigh and the nurse asked why we needed to!
Everything's all pretty fine. A bit of sticky poo at the moment so I'll have to watch my diet again. At least at home going completely dairy and gluten free is possible without starvation. We're trying lactose-free milk (which I think is actually lactase-added milk, rather than lactose-free...) to see if that makes a difference to anything. We'll see!
From here on out, since our treatment will be very patchy and rarely two days in a row, I'll just blog when things happen, every few days or so.
Sunday, 6 April 2014
Diary Luke Aemia Week 11
Sun 6th April
Daylight savings ended overnight which didn't really affect things here (since we have no particular schedule) apart from the clock showing the wrong time. Having to calculate daylight savings discrepancies minus time different to the UK was interesting.
So Miss Jacinta was tired today. The morning doctor thought she looked a little pale. I didn't really see it, but it turned out her previous haemoglobin level was 80 (around the borderline for a transfusion depending on which hospital and which country you're in). I suspect he Dr knew that before he mentioned it. Her blood counts were done again and they were about 65. Transfusion time!
We finished half the chemo just after lunch and the other half just after dinner. The flushes take a couple of hours to go through and the blood was running by the time the second chemo finished. It all finished about 10pm. She doesn't like blood transfusions and it seems she's not the only one. The mum next door had one last night and was telling me how her son gets after blood - just the same. Climbing the walls and really ratty. Jacinta asks me to stop it, she pulls on her line and looks at me in just that way.
We get through it though. So tomorrow I'm hoping they will let us downstairs a bit seeing her neutrophils should still be at a reasonable level. Anyone else they'd probably send home for a few days, but I think with AML and a heart condition we're just in, no discussion.
I guess we'll see!
Monday 7th April
So, applying the rule of 'don't ask, don't get', I decided I'd try for permission to visit the zoo. The zoo is about 15 mins walk from the hospital and most enclosures are outdoors so it's a viable option, and I know that inpatients have been allowed to go there from time to time.
Today were were completely unattached and free to roam. I asked how her neutrophils were going and asked if there was any chance they might see their way to maybe letting us go…to the zoo….
….and they weren't sure. They said her neutrophils were at .9 still, which is fine for going downstairs, but that the zoo was a different kettle of fish, quite literally. In the end the doctor said we could go as long as we were sensible (avoid children, enclosed spaces, crowded areas, sick people, touching animals…..) and as long as we were back by 1pm for when the big Dr in charge came round. Yay! We got out of there as soon as we could, before anyone could change their mind.
We weren't gone that long really, since I wanted to walk and I got a bit tired after being out walking for an hour so we had a look at a couple of things and walked back. Being members has its benefits, since you can come and go as you please without feeling like you're wasting your admission fee.
We came back and Miss Jacinta had a nice big lunch. She ate quite a bit today, actually. And she did get a tiny nap and a sleep later, about 4pm. We took the opportunity to wander downstairs again after dinner. Making hay while the sun shines. (Coz when it goes back in, we're locked up again!)
In the end she was very tired to went off to sleep about 7.30. All round, a nice day. Touch wood we'll get a few more of those before fever sets in - which it won't, of course! (That's what I keep telling the Drs anyway…..)
Tuesday 8th April
Today was another good day! We got up to the Heartkids morning tea. Both of us! I don't think Jacinta's been in over a year. Heartkids is a charity which supports the families of children with heart defects. We became members last year when she was in for her heart operation.
We got downstairs and hung out in the fresh air before the rain set in. We wandered here and there. It was nice. It was particularly nice to pop down at the end of the day to pick up a couple of things. Normally I'm rushing to get Jacinta in bed before the shops shut.
Jacinta has a new playmate in here. He has Trisomy 21 also and is on the same treatment protocol, a little behind us. His Mum had a friend visiting today whose daughter also has Trisomy 21, but is a little bit older than Jacinta and has a problem with her neck.
We all sat down to play on the mat on the floor. We spent a good hour talking about lots of natural therapies and I gave Maria's details to this mum also, and Kristen's and the name of a book on glyconutrients! It's strange being the one handing out the details for the solutions and having other people so relieved to have found real solutions to their child's condition. It's satisfying to be able to help!
So yes, today was a good day. Being able to leave the ward meant that when Jacinta woke after bedtime I could bring her out to the lounge to sing with my quartet. A MET call (Medical Emergency Team) happened almost outside the window. One of the parents in the next ward was taken ill. I'd just been wondering today what would happen if there was a MET call for a grown-up, or if they even did MET calls for grownups. Turns out they do. I don't know how much treatment she could get, but she didn't leave within the next hour so she must have been having something.
Missy went off finally and I popped her back into her room. Pretty cruisey really.
Wed 9th April
Yet another easy day. I think we had days like this in round one, but I didn't really appreciate them. After being confined to the same hospital floor for weeks, grasping every tiny opportunity to go downstairs and being severely grumpy when they were thwarted, being free to come and go as we please is lovely. We went out in the rain today, just to feel what rain feels like. We don't get much chance!
Today I asked the Fellow about her counts (I just left the o out of that word - won't do that again), which are at 2.0. The Fellow said if they were ok I could take Missy to the airport to pick up her Daddy and siblings!! (2.0 is very ok.) So, they're in the air right now and I'm assuming they won't check this blog post before 5am when they land....so, surprise!
I suspect Miss J was excited - or reacting to the spaghetti which she had today. She didn't go to sleep very easily at all. I was trying to put her down early so she'd have enough sleep for the early start, but she just couldn't settle. She was tired, but jumpy.
I ordered spaghetti for her lunch today since she had it a couple of days ago and ate loads. She did again today. She's meant to be less affected by wheat than the rest of us, according to muscle testing. Still, it's her eating it straight rather than it coming via breastmilk. It did seem she got away with it last time. Maybe it's something else. There's nothing else she had today that could be the issue though.
Anyway, she came along to the parents' dinner that Challenge (a cancer-related charity) put on once a month. Margate catering provide their services and Andrew puts on a beautiful meal. So delicious. It's a nice opportunity to chin-wag with the other parents on a chair, rather than standing around in the tiny kitchen.
Today I also went through and wrote up every little thing that we record on the beads when we do Our Beaded Journey. This is a worldwide thing I believe. I think it was a Canadian initiative. You have a big long string and for each type of event there's a particular type of bead. At the end of a couple of years of treatment some of these strings of beads are several metres. I'm doing Jacinta's because I think it will be a good way for her to measure in her later childhood exactly what she experienced during this phase of her life. I do think it would be good if we had a birth to leukaemia. There'd be at least a foot's worth of beads in that too.
Where do you stop though? Surely my other girls have some beadable experiences in their lives also.
Anyway, hopefully we can get that started soon. We're nearly halfway through our treatment!
Bed now, early start! Yay!
Thurs 10th - Sat 12th Summary.
Well, there's not much to report medically. She's had high neutrophil counts and has been allowed to come and go as much as she likes. As of Saturday she was still at 1.3, which is well over the .5 arbitrary neutropaenia number. (Neutropaenia is where you don't have enough little soldiers to fight off infections.)
So we went to the airport, which was lovely, and I wound up with two voluntarily sleeping daughters by 12.30pm. I attempted to wake them about 2.30, which was a bad, bad, bad idea. After the sort of behaviour you'd expect from a child being forced to undergo a painful procedure they both took themselves back to bed within 5 minutes and slept til 7pm. I let them go since I hadn't heard from my husband, whose power nap at our base camp 10 minutes away wound up taking til 5pm and I figured it would be kinder to him to have them all on the same time zone.
After a repeat performance on Saturday, we woke them at 6pm and went out for the night. These last few days had very little to do with Jacinta, and more to do with her family catching up on sleep!
Daylight savings ended overnight which didn't really affect things here (since we have no particular schedule) apart from the clock showing the wrong time. Having to calculate daylight savings discrepancies minus time different to the UK was interesting.
So Miss Jacinta was tired today. The morning doctor thought she looked a little pale. I didn't really see it, but it turned out her previous haemoglobin level was 80 (around the borderline for a transfusion depending on which hospital and which country you're in). I suspect he Dr knew that before he mentioned it. Her blood counts were done again and they were about 65. Transfusion time!
We finished half the chemo just after lunch and the other half just after dinner. The flushes take a couple of hours to go through and the blood was running by the time the second chemo finished. It all finished about 10pm. She doesn't like blood transfusions and it seems she's not the only one. The mum next door had one last night and was telling me how her son gets after blood - just the same. Climbing the walls and really ratty. Jacinta asks me to stop it, she pulls on her line and looks at me in just that way.
We get through it though. So tomorrow I'm hoping they will let us downstairs a bit seeing her neutrophils should still be at a reasonable level. Anyone else they'd probably send home for a few days, but I think with AML and a heart condition we're just in, no discussion.
I guess we'll see!
Monday 7th April
So, applying the rule of 'don't ask, don't get', I decided I'd try for permission to visit the zoo. The zoo is about 15 mins walk from the hospital and most enclosures are outdoors so it's a viable option, and I know that inpatients have been allowed to go there from time to time.
Today were were completely unattached and free to roam. I asked how her neutrophils were going and asked if there was any chance they might see their way to maybe letting us go…to the zoo….
….and they weren't sure. They said her neutrophils were at .9 still, which is fine for going downstairs, but that the zoo was a different kettle of fish, quite literally. In the end the doctor said we could go as long as we were sensible (avoid children, enclosed spaces, crowded areas, sick people, touching animals…..) and as long as we were back by 1pm for when the big Dr in charge came round. Yay! We got out of there as soon as we could, before anyone could change their mind.
We weren't gone that long really, since I wanted to walk and I got a bit tired after being out walking for an hour so we had a look at a couple of things and walked back. Being members has its benefits, since you can come and go as you please without feeling like you're wasting your admission fee.
We came back and Miss Jacinta had a nice big lunch. She ate quite a bit today, actually. And she did get a tiny nap and a sleep later, about 4pm. We took the opportunity to wander downstairs again after dinner. Making hay while the sun shines. (Coz when it goes back in, we're locked up again!)
In the end she was very tired to went off to sleep about 7.30. All round, a nice day. Touch wood we'll get a few more of those before fever sets in - which it won't, of course! (That's what I keep telling the Drs anyway…..)
Tuesday 8th April
Today was another good day! We got up to the Heartkids morning tea. Both of us! I don't think Jacinta's been in over a year. Heartkids is a charity which supports the families of children with heart defects. We became members last year when she was in for her heart operation.
We got downstairs and hung out in the fresh air before the rain set in. We wandered here and there. It was nice. It was particularly nice to pop down at the end of the day to pick up a couple of things. Normally I'm rushing to get Jacinta in bed before the shops shut.
Jacinta has a new playmate in here. He has Trisomy 21 also and is on the same treatment protocol, a little behind us. His Mum had a friend visiting today whose daughter also has Trisomy 21, but is a little bit older than Jacinta and has a problem with her neck.
We all sat down to play on the mat on the floor. We spent a good hour talking about lots of natural therapies and I gave Maria's details to this mum also, and Kristen's and the name of a book on glyconutrients! It's strange being the one handing out the details for the solutions and having other people so relieved to have found real solutions to their child's condition. It's satisfying to be able to help!
So yes, today was a good day. Being able to leave the ward meant that when Jacinta woke after bedtime I could bring her out to the lounge to sing with my quartet. A MET call (Medical Emergency Team) happened almost outside the window. One of the parents in the next ward was taken ill. I'd just been wondering today what would happen if there was a MET call for a grown-up, or if they even did MET calls for grownups. Turns out they do. I don't know how much treatment she could get, but she didn't leave within the next hour so she must have been having something.
Missy went off finally and I popped her back into her room. Pretty cruisey really.
Wed 9th April
Yet another easy day. I think we had days like this in round one, but I didn't really appreciate them. After being confined to the same hospital floor for weeks, grasping every tiny opportunity to go downstairs and being severely grumpy when they were thwarted, being free to come and go as we please is lovely. We went out in the rain today, just to feel what rain feels like. We don't get much chance!
Today I asked the Fellow about her counts (I just left the o out of that word - won't do that again), which are at 2.0. The Fellow said if they were ok I could take Missy to the airport to pick up her Daddy and siblings!! (2.0 is very ok.) So, they're in the air right now and I'm assuming they won't check this blog post before 5am when they land....so, surprise!
I suspect Miss J was excited - or reacting to the spaghetti which she had today. She didn't go to sleep very easily at all. I was trying to put her down early so she'd have enough sleep for the early start, but she just couldn't settle. She was tired, but jumpy.
I ordered spaghetti for her lunch today since she had it a couple of days ago and ate loads. She did again today. She's meant to be less affected by wheat than the rest of us, according to muscle testing. Still, it's her eating it straight rather than it coming via breastmilk. It did seem she got away with it last time. Maybe it's something else. There's nothing else she had today that could be the issue though.
Anyway, she came along to the parents' dinner that Challenge (a cancer-related charity) put on once a month. Margate catering provide their services and Andrew puts on a beautiful meal. So delicious. It's a nice opportunity to chin-wag with the other parents on a chair, rather than standing around in the tiny kitchen.
Today I also went through and wrote up every little thing that we record on the beads when we do Our Beaded Journey. This is a worldwide thing I believe. I think it was a Canadian initiative. You have a big long string and for each type of event there's a particular type of bead. At the end of a couple of years of treatment some of these strings of beads are several metres. I'm doing Jacinta's because I think it will be a good way for her to measure in her later childhood exactly what she experienced during this phase of her life. I do think it would be good if we had a birth to leukaemia. There'd be at least a foot's worth of beads in that too.
Where do you stop though? Surely my other girls have some beadable experiences in their lives also.
Anyway, hopefully we can get that started soon. We're nearly halfway through our treatment!
Bed now, early start! Yay!
Thurs 10th - Sat 12th Summary.
Well, there's not much to report medically. She's had high neutrophil counts and has been allowed to come and go as much as she likes. As of Saturday she was still at 1.3, which is well over the .5 arbitrary neutropaenia number. (Neutropaenia is where you don't have enough little soldiers to fight off infections.)
So we went to the airport, which was lovely, and I wound up with two voluntarily sleeping daughters by 12.30pm. I attempted to wake them about 2.30, which was a bad, bad, bad idea. After the sort of behaviour you'd expect from a child being forced to undergo a painful procedure they both took themselves back to bed within 5 minutes and slept til 7pm. I let them go since I hadn't heard from my husband, whose power nap at our base camp 10 minutes away wound up taking til 5pm and I figured it would be kinder to him to have them all on the same time zone.
After a repeat performance on Saturday, we woke them at 6pm and went out for the night. These last few days had very little to do with Jacinta, and more to do with her family catching up on sleep!
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….
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….
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