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.
Tuesday, 22 April 2014
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….
Sunday, 23 March 2014
Diary Luke Aemia Week 9
Sun 23rd March
So today was a pretty run of the mill day, medically speaking.
The potassium wasn't given last night so the slightly low potassium result may have been false.
Jacinta's weight was back to around her base weight, so the Dr stopped all the diuretics. We just have to have normal potassium to be back to our once daily antifungal and thrice weekly antibiotic orally.
We still have twice daily antibiotics intravenously until the counts go up.
The weekend Dr thinks that there will need to be another platelets transfusion in a couple of days - but that's only if they don't go up on their own, and he doesn't know our Jacinta!
(Or am I clinging to tiny strands of hope that we might still make it out in time to wave our family off to the UK on Friday?)
We got to sleep in again this morning - and it slipped my mind to be dressed for the appointed time with Maria, the naturopath! Oopsie! Oh well. I was dressed by about 2pm, I think.
So, in terms of making it out, we're waiting for the platelets to hold their own, which will signify that the bone marrow is waking up. They told me at the beginning of this round that it takes longer to wake up because of how they hit it while it's down. The Dr today said you want the counts to be down because that means the treatment's worked. Not sure if the duration of the suppression indicates a better quality of treatment - I'd have thought dead leukaemia cells were dead leukaemia cells.
Anyway, here I was two weeks ago thinking that it was likely we'd be home by now, but it's nowhere on the horizon until those platelets wake up.
We had a few different visitors today which was good because the siblings and daddy weren't able to come, sporting a nasty cough. Once again I found out about all the celebrities who'd been in during the week and hadn't made it anywhere near our room. We had Barbie come this week though, who could possibly top Barbie?
Monday 24th March
Well, we had 2 Geelong football players downstairs today - but I don't go for Geelong, so Barbie still wins.
Jacinta's weight was up by 300g and her sats at 95 or so, so they've decided to put her back on diuretics, but the Spironolactone - the potassium-sparing one. Hopefully this means breathing easily and keeping potassium until her counts come back up and we can turn off the antibiotics.
Have spent the last 3 hours finding out things for my husband who is flat chat and has no time to organise his trip to London this Friday. Lots of letting my fingers do the walking! Sore wrists and I still haven't found the best place to get a SIM card on foot without massive detours….Hmmm….
Tuesday 25th March - Thursday 27th March
I have to fess up: I can't remember anything that happened on Tuesday, except that the internet crashed! Accordingly, I couldn't blog at all on Tuesday.
Ah yes, I just checked facebook and saw that what should have been a straightforward exercise in hooking a sleeping Jacinta up for antibiotics at 7pm and then letting her sleep turned into a complicated exercise in hooking a rudely awoken Jacinta up for antibiotics at 7.45pm and people coming in and out for an hour and then it taking another hour or more for her to settle, which meant I missed rehearsal completely! It was nobody's fault really, but man it was annoying!
And now I remember, we were let off the leash! The nurse decided to unhook us between antibiotics doses (6 hours between) and then suggested we could go outside, to the park even!
So we did. I got some exercise, which was lovely, and could actually have stated with authority on the state of the weather for the day. Quite sunny and warm.
Wednesday was quite busy, my middlest came in as usual and we hung out. Miss J was a bit warm in the morning, tending to quite warm in the evening. We got downstairs again, to the playground, which was lovely. I asked the doctor in the morning if, since we could be unplugged between doses and if Jacinta's main problem was too much fluid, would it be reasonable to keep her unplugged all the time and only hook her up for drugs? The doctor had a chat to the nurses and they concluded that it would be reasonable, so we're now mostly free!
By the evening she needed haemoglobin and was not a very happy young lady. She wouldn't sleep on her own so when I eventually managed to extract myself, she was in the middle of my bed. I kind of arranged myself around her and slept there too.
Thursday was the day of the stuck lines. The thing with permanent intravenous lines is that you really don't want them to get blocked! You don't want to have to put in a new Hickman. That's surgery.
So there are three ways to "lock" the lines that drugs or blood flow through.
Strong lock is where you put a strong dose of anticoagulant (blood thinner) liquid in the tube, sitting there, making sure nothing in there clots, then you clamp it shut.
Weak lock is where you put a weaker dose of anticoagulant liquid in the tube. It doesn't last as long - a strong lock lasts a week whereas a weak lock lasts about 24 hours.
Saline lock is where you put saline in the tube. This lasts 6 hours.
So they were putting a weak lock in the tubes, then around lunch time Wednesday they said they were allowed to use a saline lock. Then they started 'occluding' repeatedly, which is where the infusion isn't flowing as well as it should.
Then this morning they were very hard to bleed back, which is where they check the line by drawing some blood back out of the tube to make sure it's in the right spot. They were getting a little stiff.
Then later this afternoon they could barely get anything back. They decided to replace the bits on the ends. They did this and they were still hard to get working.
I had to pop home and just before I did they got something called TPA (I think) which is what they give to stroke patients, similar thing to the strong lock, but heavy duty. They put this in the line. When I got back they told me it had worked and it was all bleeding back beautifully. (Yay!)
Now Miss J's sats (blood oxygen percentage) are sitting low and she's got a bit of wafting oxygen on.
The other exciting thing I heard when I got back is that the nurses had been having cuddles with Jacinta - who had woken up and not been screaming blue murder that I wasn't there!!! This has never happened. Not wanting to jump the gun, but perhaps we've turned a corner....
On the bloods front, the platelets seem to be trending upwards which signifies the bone marrow is waking up. Who knows how long it will be, but there's a little tiny light at the end of the tunnel.
And the family flies out tomorrow......
Friday 28th March - Sat 29th March
And away they flew.
And wasn't that interesting....
Jacinta's oxygen levels were a bit low still during the day so we had her on a bit of oxygen. She was feeling a bit warm too. The family came in about 11 and we hung out for a bit and then her grandparents came in to take over while I took the rest of the family to the airport to see them off.
She wasn't super enthusiastic about me going - she never really is.
When I got back she was sleeping on her Nan and before I entered the room I heard that she'd been dipping down during the afternoon and her temp had gone up over 38 - I was only gone three hours!
The doctors had been called in a couple of times and she was settled and on oxygen for now, but they were keeping a close eye on her.
Soon after I got back, she awoke and saw me and let me have it. I was told, in no uncertain terms, that things were not good! Then, about half an hour later, her temp was good and her sats were good. It was like the afternoon had never happened! She had been put on a second antibiotic though. Her sats that night were low and we needed some wafting oxygen - which is comical and slightly annoying that the monitor goes off every time she rolls over to get away from the mask.
I've now spent the last few evenings planning for the rest of the family's time in London, so I've been neglecting the blog.
The most interesting thing that happened on Saturday is that I asked the nurse looking after us to fill in the blood results from the last few weeks - I'm a bit behind. She did this and commented that we had some neutrophils. Sure enough, the very result from that day showed .22 - all of a sudden, just like that!
This is a going home number, so from then the game became to get her off the antibiotics and sort out the sats issues from fluid overload.
The night once again was low sats and oxygen. It was a broken sleep. I didn't get much.
So today was a pretty run of the mill day, medically speaking.
The potassium wasn't given last night so the slightly low potassium result may have been false.
Jacinta's weight was back to around her base weight, so the Dr stopped all the diuretics. We just have to have normal potassium to be back to our once daily antifungal and thrice weekly antibiotic orally.
We still have twice daily antibiotics intravenously until the counts go up.
The weekend Dr thinks that there will need to be another platelets transfusion in a couple of days - but that's only if they don't go up on their own, and he doesn't know our Jacinta!
(Or am I clinging to tiny strands of hope that we might still make it out in time to wave our family off to the UK on Friday?)
We got to sleep in again this morning - and it slipped my mind to be dressed for the appointed time with Maria, the naturopath! Oopsie! Oh well. I was dressed by about 2pm, I think.
So, in terms of making it out, we're waiting for the platelets to hold their own, which will signify that the bone marrow is waking up. They told me at the beginning of this round that it takes longer to wake up because of how they hit it while it's down. The Dr today said you want the counts to be down because that means the treatment's worked. Not sure if the duration of the suppression indicates a better quality of treatment - I'd have thought dead leukaemia cells were dead leukaemia cells.
Anyway, here I was two weeks ago thinking that it was likely we'd be home by now, but it's nowhere on the horizon until those platelets wake up.
We had a few different visitors today which was good because the siblings and daddy weren't able to come, sporting a nasty cough. Once again I found out about all the celebrities who'd been in during the week and hadn't made it anywhere near our room. We had Barbie come this week though, who could possibly top Barbie?
Monday 24th March
Well, we had 2 Geelong football players downstairs today - but I don't go for Geelong, so Barbie still wins.
Jacinta's weight was up by 300g and her sats at 95 or so, so they've decided to put her back on diuretics, but the Spironolactone - the potassium-sparing one. Hopefully this means breathing easily and keeping potassium until her counts come back up and we can turn off the antibiotics.
Have spent the last 3 hours finding out things for my husband who is flat chat and has no time to organise his trip to London this Friday. Lots of letting my fingers do the walking! Sore wrists and I still haven't found the best place to get a SIM card on foot without massive detours….Hmmm….
Tuesday 25th March - Thursday 27th March
I have to fess up: I can't remember anything that happened on Tuesday, except that the internet crashed! Accordingly, I couldn't blog at all on Tuesday.
Ah yes, I just checked facebook and saw that what should have been a straightforward exercise in hooking a sleeping Jacinta up for antibiotics at 7pm and then letting her sleep turned into a complicated exercise in hooking a rudely awoken Jacinta up for antibiotics at 7.45pm and people coming in and out for an hour and then it taking another hour or more for her to settle, which meant I missed rehearsal completely! It was nobody's fault really, but man it was annoying!
And now I remember, we were let off the leash! The nurse decided to unhook us between antibiotics doses (6 hours between) and then suggested we could go outside, to the park even!
So we did. I got some exercise, which was lovely, and could actually have stated with authority on the state of the weather for the day. Quite sunny and warm.
Wednesday was quite busy, my middlest came in as usual and we hung out. Miss J was a bit warm in the morning, tending to quite warm in the evening. We got downstairs again, to the playground, which was lovely. I asked the doctor in the morning if, since we could be unplugged between doses and if Jacinta's main problem was too much fluid, would it be reasonable to keep her unplugged all the time and only hook her up for drugs? The doctor had a chat to the nurses and they concluded that it would be reasonable, so we're now mostly free!
By the evening she needed haemoglobin and was not a very happy young lady. She wouldn't sleep on her own so when I eventually managed to extract myself, she was in the middle of my bed. I kind of arranged myself around her and slept there too.
Thursday was the day of the stuck lines. The thing with permanent intravenous lines is that you really don't want them to get blocked! You don't want to have to put in a new Hickman. That's surgery.
So there are three ways to "lock" the lines that drugs or blood flow through.
Strong lock is where you put a strong dose of anticoagulant (blood thinner) liquid in the tube, sitting there, making sure nothing in there clots, then you clamp it shut.
Weak lock is where you put a weaker dose of anticoagulant liquid in the tube. It doesn't last as long - a strong lock lasts a week whereas a weak lock lasts about 24 hours.
Saline lock is where you put saline in the tube. This lasts 6 hours.
So they were putting a weak lock in the tubes, then around lunch time Wednesday they said they were allowed to use a saline lock. Then they started 'occluding' repeatedly, which is where the infusion isn't flowing as well as it should.
Then this morning they were very hard to bleed back, which is where they check the line by drawing some blood back out of the tube to make sure it's in the right spot. They were getting a little stiff.
Then later this afternoon they could barely get anything back. They decided to replace the bits on the ends. They did this and they were still hard to get working.
I had to pop home and just before I did they got something called TPA (I think) which is what they give to stroke patients, similar thing to the strong lock, but heavy duty. They put this in the line. When I got back they told me it had worked and it was all bleeding back beautifully. (Yay!)
Now Miss J's sats (blood oxygen percentage) are sitting low and she's got a bit of wafting oxygen on.
The other exciting thing I heard when I got back is that the nurses had been having cuddles with Jacinta - who had woken up and not been screaming blue murder that I wasn't there!!! This has never happened. Not wanting to jump the gun, but perhaps we've turned a corner....
On the bloods front, the platelets seem to be trending upwards which signifies the bone marrow is waking up. Who knows how long it will be, but there's a little tiny light at the end of the tunnel.
And the family flies out tomorrow......
Friday 28th March - Sat 29th March
And away they flew.
And wasn't that interesting....
Jacinta's oxygen levels were a bit low still during the day so we had her on a bit of oxygen. She was feeling a bit warm too. The family came in about 11 and we hung out for a bit and then her grandparents came in to take over while I took the rest of the family to the airport to see them off.
She wasn't super enthusiastic about me going - she never really is.
When I got back she was sleeping on her Nan and before I entered the room I heard that she'd been dipping down during the afternoon and her temp had gone up over 38 - I was only gone three hours!
The doctors had been called in a couple of times and she was settled and on oxygen for now, but they were keeping a close eye on her.
Soon after I got back, she awoke and saw me and let me have it. I was told, in no uncertain terms, that things were not good! Then, about half an hour later, her temp was good and her sats were good. It was like the afternoon had never happened! She had been put on a second antibiotic though. Her sats that night were low and we needed some wafting oxygen - which is comical and slightly annoying that the monitor goes off every time she rolls over to get away from the mask.
I've now spent the last few evenings planning for the rest of the family's time in London, so I've been neglecting the blog.
The most interesting thing that happened on Saturday is that I asked the nurse looking after us to fill in the blood results from the last few weeks - I'm a bit behind. She did this and commented that we had some neutrophils. Sure enough, the very result from that day showed .22 - all of a sudden, just like that!
This is a going home number, so from then the game became to get her off the antibiotics and sort out the sats issues from fluid overload.
The night once again was low sats and oxygen. It was a broken sleep. I didn't get much.
Sunday, 16 March 2014
Week 8 Diary Luke Aemia
Sunday 16th March
Today the doctor came by nice and early and happily declared us to be 'boring'. She wished us a boring day. Ah well.
Maria came this morning, after several unsuccessful attempts to put Jacinta to sleep. She treated kidneys as well as the usual cancer and white cells plus T21.
After Maria had treated her I finally got her to sleep, noticing that she was breathing quite rapidly. I had noticed this earlier as well, either last night or this morning, I can't remember. I counted 30 breaths in 30 seconds. I had to go out for a few hours, leaving all three children with my husband, but before I went I mentioned to the nurse that it seemed fast. She was intending to do some obs shortly so she bore it in mind.
When I got back I heard that she'd been given frusemide (a diuretic) because of shortness of breath. She looked fine to me when I got back and what's more, she had been fine for my husband and there were no tears on my arrival. (Usually we have buckets.) This is a big step! I still wasn't allowed to leave the room later on, but if I can leave her asleep or with someone else and know that I won't automatically condemn her to hours of distress, this is good.
After everyone had left she had a bath and on the completion of the bath I noticed her Hickman dressing seemed a little bit loose. It had water underneath it. Dressing change! I tidied up the room and took some dishes to the kitchen.
On walking back I saw a familiar-looking doctor behind me and said 'hello'. Then I stopped and said "Hey, you're from the Women's!", and he was! One of the junior doctors who spent the most time looking after Jacinta in her first weeks with us is now working at the Children's as a Paediatric Registrar! It was so nice to see him.
zzWith a bit of reminding he remembered her history and was really pleased to see her looking so well, though not so happy about the leukaemia, but at the same time not completely surprised. He did say, "we thought that was just a transient thing…", which is rather telling. Anyway, it was so lovely to see an old friend. It made my night.
Then back to the room, meds and bed. Fairly boring. Or so you'd think….
It's taken a while to find her nurse (handover time) but she's arrived and done her obs. All of a sudden Jacinta's sats are around 90. This is odd. Her breathing is a little shallow. Normally I blog in retrospect, but it's come up as I'm blogging. They're going to get the Dr to have a look. I guess we'll see what happens for the rest of the night. Who knows…..
Monday 17th March
Well, the Dr did come past and have a look. This doctor, who had never laid eyes on Jacinta before, decided it sounded like the beginning of croup. This was mainly based on a slightly hoarse sounding cough she did. We thought we'd watch and wait and keep her on wafting oxygen.
By morning the sats were slightly better when off oxygen and when the sats probe was replaced they were sitting around 99-100 again. Hmmm. That nurse decided to switch everything off. It made sense. It didn't explain the shallow quick breathing though, and the slight hoarseness which was there, despite the croup thing seeming to be a long shot.
Still, we went through the day being fairly much as usual, not giving anyone any trouble at all. Weighed in at 7.8kg - mused that maybe that's just what she weighs now, since she was 7.2kg two months ago and she is meant to be growing. (She's been averaging about 7.3 lately.)
Tuesday 18th March
This morning, when feeding, Jacinta seemed to be quite out-of-breath. She was almost pulling off to breathe, which was reminiscent of the state she was in prior to her heart surgery. They got the Dr to come in and have a look. She wasn't feeding then but sleeping so her breathing was slower and less laboured. The doctor didn't think she was working too hard and couldn't hear any fluid on her chest.
Her weight was about 7.7kg.
There was another episode later in the day where she was breathing very quickly and shallowly and she was very mottled-looking for a lot of the afternoon. Still, she was the same. (Still, I was concerned.) Nonetheless she got off to sleep and slept the whole night through, pretty much.
Wednesday 19th March
Today she was working quite hard in the breathing department. The Dr came in and had a look and agreed that she was working quite hard. She still didn't sound overloaded, but her weight was 7.9kg and she looked out-of-breath. We got her a dose of frusemide. They assumed that the fluid going constantly in on top of her feeding was overloading her gradually. Can't wait for these neutrophils to move so we can stop the antibiotics! (Still not much in the white cells department, and they're only leukocytes.)
So I'll keep monitoring. It worries me slightly that she doesn't look overloaded with fluid. If it's not fluid then surely it's just the heart….. Still, we'll see.
On the plus side, her weepy nappy rash has a new friend in the special powder that goes on and makes a dry surface for zinc-based creams to stick to and create a barrier! Hoping the weeping goes from half-healed to fully healed by tomorrow.
Thursday 20th March
Well that was a bit of wishful thinking…
Anyway, it's reduced by half again.
So today we looked like we were overloaded even though we couldn't hear anything. We started on a daily dose of frusemide (lasix), the diuretic. She's more comfortable now after a few big wees. Her haemoglobin was also at 79 so she was given some more. The nurses had a training thing last week on blood and the processes through which it arrives at the hospital. Apparently the value of a bag of red cells is about $350! I think platelets are more like $500. They don't pay this unless it gets wasted. (The government pays if it gets used.) Thing is, the blood bank makes up all these massive bags which are single use and they don't want to give a big bag to a tiny child, so half of it goes in the bin, and everyone comments on what a waste of blood it is!
Last night was a crazy night. She woke with a pooey nappy about midnight and I took her to bed with me, to ensure a better sleep - or so I thought. She either didn't sleep or it was very patchy. At 3am we emerged from out room to make a cup of tea. Our nurse for the night (one of the new graduate nurses, who is, incidentally, one of the smartest people on the ward) offered to sit out at the nurses' station with Jacinta for a while so I could get some sleep. I was doubtful it would work, but happy to try anything since I had my middlest arriving at 9am or so and was looking at about 5 hours' sleep.
She made it about 2 metres up the hall and Jacinta wasn't playing ball so within 60 seconds they'd arrived back in the room. I decided to try properly to get her to sleep so I rocked and she actually went down quite easily. I find that a good cry, for better or worse, seems to result in faster settling. I took her to bed with me, which was good because she woke every hour or so til 8am.
Anyway, tonight she was looking quite ruddy - that point beyond rosy where you know they've had enough red blood cells for one day. She was super tired but grizzly. It seems almost as though she has a bit too much and it's uncomfortable somehow. Maybe you get wired with too much red blood. Anyway, after an unsettled sleep from 7-8, during which she grizzled every time I put her down, then a period of wakefulness when I didn't let her sleep, she finally went down after another feed about 10.
She didn't drink much today - either her tummy or breathlessness were stopping her it seems. She didn't eat anything really either. Every bit of food was thrown away.
So she's still asleep now and I'm fingers X she'll stay that way!
Friday 21st March
I can't exactly remember what happened in the end, but she was connected and woke up and I had to sit up in the chair with everything. She went to bed in my bed eventually so I think we ditched the oxygen at some point. I didn't get much sleep!
Today we had Bactrim, since it's Friday. We had lasix added yesterday as a regular dose and there's now a potassium deficiency which means the disgusting potassium supplement. One nurse today said he's never tasted it but he's had it spat back at him, so he knows it's not tasty! I do wonder how they can make salt and potassium tablets that are virtually tasteless and dissolve in the mouth but can't make a palatable single potassium tablet or liquid. It's a big dose too - about 5ml!
Anyway, we had lasix, tazomoxifen (antibiotic) and potassium all going in so it felt like every half an hour the pumps were going off and I'd be pressing the nurse call button. No wonder the day flew by. We didn't have the same slightly serious patches of breathlessness that we've had the past few days. Possibly they're less serious because we know there's a dose of diuretic soon.
Just as we were going off to sleep, siblings arrived and announced they were kidnapping me and taking me to Luna Park, our quaint and super-fun amusement park by the sea. Jacinta was super happy and surprised to see her sisters and her Daddy and not super happy that she wasn't coming too. It was a bit sad that she couldn't be there, but it was so very therapeutic for the big girls (and us) to have fun with both their parents at once.
It was also World Down Syndrome Awareness Day. It was all over my Facebook news feed. I don't have much more information to give you all than I'm already giving on a daily basis, so I don't really need a special day to raise everyone's awareness. I think Jacinta has the respect of a lot of people and that's the purpose of being aware of a condition. If Jacinta is people's definition of Down syndrome then that's a good thing. (So long as Jacinta is not defined by people's erroneous assumptions about Down syndrome.)
I have to say I don't really like the odd socks thing and I won't be doing that. I don't like to raise awareness by using something that ordinarily shows you're not operating at 100%. Showing up to work with odd socks would gain you some degree of ridicule. It's a duffer who puts odd socks on. Either they didn't notice or they had no clean pairs. Either one is not the doing of a capable person.
I finally found something that explained that two socks placed heel to heel looks like a chromosome karyotype. It's a bit of a stretch for me, particularly since it took so long to find out the reason.
Anyway, I'm all for letting people know that there's a new definition for Down syndrome. I'll just keep doing it my way, one day at a time!
Saturday 22nd March
Well, as has been the pattern lately, as soon as I was getting ready for bed Miss J woke up. It was midnight and I was really really looking forward to bed!!
In my less than brilliant (sleep deprived) state, my sleep-inducing ideas were pretty thin on the ground. I was scraping the bottom of the barrel and finding I'd cleaned it out already. We tried for a couple of hours then watched the latest episode of Dr Blake's Murder Mysteries. She quite enjoyed it.
Finally she was so wrecked that a bit of the old 'spin around in a circle til their eyes shut' did the trick and she went down without argument. At 4am. The main difficulty had been that she was on the sats monitor and couldn't reach the parent bed. Normally I just take her with me and feed her to sleep with a cuddle. Works every time.
As it was she was taken off the monitor eventually so when she awoke in the wee hours I took her back to bed and we slept in til 11. Thank goodness! By the time I was ready to make toast for breakfast the lunch tray had arrived, so she had lunch for breakfast, naturally.
They gave her more things to take orally, because clearly she didn't have enough. (Or because it was medically indicated…) The antibiotics lead to fluid overload which required diuretics. The diuretics have now caused potassium loss which means she takes oral potassium twice a day (which is 5mg - lots, and really strong tasting) and another diuretic which saves potassium but is less effective as a diuretic, but at least tastes alright. It can't be done intravenously.
So now we're doing about 10ml of meds by syringe with breakfast. Not a fun time when she takes about .5ml at a go.
We had a nice day, with siblings in today. There wasn't much happening, just antibiotics and diuretics going in. Platelets today too. Waiting, waiting. Fingers x she stays asleep…...
Today the doctor came by nice and early and happily declared us to be 'boring'. She wished us a boring day. Ah well.
Maria came this morning, after several unsuccessful attempts to put Jacinta to sleep. She treated kidneys as well as the usual cancer and white cells plus T21.
After Maria had treated her I finally got her to sleep, noticing that she was breathing quite rapidly. I had noticed this earlier as well, either last night or this morning, I can't remember. I counted 30 breaths in 30 seconds. I had to go out for a few hours, leaving all three children with my husband, but before I went I mentioned to the nurse that it seemed fast. She was intending to do some obs shortly so she bore it in mind.
When I got back I heard that she'd been given frusemide (a diuretic) because of shortness of breath. She looked fine to me when I got back and what's more, she had been fine for my husband and there were no tears on my arrival. (Usually we have buckets.) This is a big step! I still wasn't allowed to leave the room later on, but if I can leave her asleep or with someone else and know that I won't automatically condemn her to hours of distress, this is good.
After everyone had left she had a bath and on the completion of the bath I noticed her Hickman dressing seemed a little bit loose. It had water underneath it. Dressing change! I tidied up the room and took some dishes to the kitchen.
On walking back I saw a familiar-looking doctor behind me and said 'hello'. Then I stopped and said "Hey, you're from the Women's!", and he was! One of the junior doctors who spent the most time looking after Jacinta in her first weeks with us is now working at the Children's as a Paediatric Registrar! It was so nice to see him.
zzWith a bit of reminding he remembered her history and was really pleased to see her looking so well, though not so happy about the leukaemia, but at the same time not completely surprised. He did say, "we thought that was just a transient thing…", which is rather telling. Anyway, it was so lovely to see an old friend. It made my night.
Then back to the room, meds and bed. Fairly boring. Or so you'd think….
It's taken a while to find her nurse (handover time) but she's arrived and done her obs. All of a sudden Jacinta's sats are around 90. This is odd. Her breathing is a little shallow. Normally I blog in retrospect, but it's come up as I'm blogging. They're going to get the Dr to have a look. I guess we'll see what happens for the rest of the night. Who knows…..
Monday 17th March
Well, the Dr did come past and have a look. This doctor, who had never laid eyes on Jacinta before, decided it sounded like the beginning of croup. This was mainly based on a slightly hoarse sounding cough she did. We thought we'd watch and wait and keep her on wafting oxygen.
By morning the sats were slightly better when off oxygen and when the sats probe was replaced they were sitting around 99-100 again. Hmmm. That nurse decided to switch everything off. It made sense. It didn't explain the shallow quick breathing though, and the slight hoarseness which was there, despite the croup thing seeming to be a long shot.
Still, we went through the day being fairly much as usual, not giving anyone any trouble at all. Weighed in at 7.8kg - mused that maybe that's just what she weighs now, since she was 7.2kg two months ago and she is meant to be growing. (She's been averaging about 7.3 lately.)
Tuesday 18th March
This morning, when feeding, Jacinta seemed to be quite out-of-breath. She was almost pulling off to breathe, which was reminiscent of the state she was in prior to her heart surgery. They got the Dr to come in and have a look. She wasn't feeding then but sleeping so her breathing was slower and less laboured. The doctor didn't think she was working too hard and couldn't hear any fluid on her chest.
Her weight was about 7.7kg.
There was another episode later in the day where she was breathing very quickly and shallowly and she was very mottled-looking for a lot of the afternoon. Still, she was the same. (Still, I was concerned.) Nonetheless she got off to sleep and slept the whole night through, pretty much.
Wednesday 19th March
Today she was working quite hard in the breathing department. The Dr came in and had a look and agreed that she was working quite hard. She still didn't sound overloaded, but her weight was 7.9kg and she looked out-of-breath. We got her a dose of frusemide. They assumed that the fluid going constantly in on top of her feeding was overloading her gradually. Can't wait for these neutrophils to move so we can stop the antibiotics! (Still not much in the white cells department, and they're only leukocytes.)
So I'll keep monitoring. It worries me slightly that she doesn't look overloaded with fluid. If it's not fluid then surely it's just the heart….. Still, we'll see.
On the plus side, her weepy nappy rash has a new friend in the special powder that goes on and makes a dry surface for zinc-based creams to stick to and create a barrier! Hoping the weeping goes from half-healed to fully healed by tomorrow.
Thursday 20th March
Well that was a bit of wishful thinking…
Anyway, it's reduced by half again.
So today we looked like we were overloaded even though we couldn't hear anything. We started on a daily dose of frusemide (lasix), the diuretic. She's more comfortable now after a few big wees. Her haemoglobin was also at 79 so she was given some more. The nurses had a training thing last week on blood and the processes through which it arrives at the hospital. Apparently the value of a bag of red cells is about $350! I think platelets are more like $500. They don't pay this unless it gets wasted. (The government pays if it gets used.) Thing is, the blood bank makes up all these massive bags which are single use and they don't want to give a big bag to a tiny child, so half of it goes in the bin, and everyone comments on what a waste of blood it is!
Last night was a crazy night. She woke with a pooey nappy about midnight and I took her to bed with me, to ensure a better sleep - or so I thought. She either didn't sleep or it was very patchy. At 3am we emerged from out room to make a cup of tea. Our nurse for the night (one of the new graduate nurses, who is, incidentally, one of the smartest people on the ward) offered to sit out at the nurses' station with Jacinta for a while so I could get some sleep. I was doubtful it would work, but happy to try anything since I had my middlest arriving at 9am or so and was looking at about 5 hours' sleep.
She made it about 2 metres up the hall and Jacinta wasn't playing ball so within 60 seconds they'd arrived back in the room. I decided to try properly to get her to sleep so I rocked and she actually went down quite easily. I find that a good cry, for better or worse, seems to result in faster settling. I took her to bed with me, which was good because she woke every hour or so til 8am.
Anyway, tonight she was looking quite ruddy - that point beyond rosy where you know they've had enough red blood cells for one day. She was super tired but grizzly. It seems almost as though she has a bit too much and it's uncomfortable somehow. Maybe you get wired with too much red blood. Anyway, after an unsettled sleep from 7-8, during which she grizzled every time I put her down, then a period of wakefulness when I didn't let her sleep, she finally went down after another feed about 10.
She didn't drink much today - either her tummy or breathlessness were stopping her it seems. She didn't eat anything really either. Every bit of food was thrown away.
So she's still asleep now and I'm fingers X she'll stay that way!
Friday 21st March
I can't exactly remember what happened in the end, but she was connected and woke up and I had to sit up in the chair with everything. She went to bed in my bed eventually so I think we ditched the oxygen at some point. I didn't get much sleep!
Today we had Bactrim, since it's Friday. We had lasix added yesterday as a regular dose and there's now a potassium deficiency which means the disgusting potassium supplement. One nurse today said he's never tasted it but he's had it spat back at him, so he knows it's not tasty! I do wonder how they can make salt and potassium tablets that are virtually tasteless and dissolve in the mouth but can't make a palatable single potassium tablet or liquid. It's a big dose too - about 5ml!
Anyway, we had lasix, tazomoxifen (antibiotic) and potassium all going in so it felt like every half an hour the pumps were going off and I'd be pressing the nurse call button. No wonder the day flew by. We didn't have the same slightly serious patches of breathlessness that we've had the past few days. Possibly they're less serious because we know there's a dose of diuretic soon.
Just as we were going off to sleep, siblings arrived and announced they were kidnapping me and taking me to Luna Park, our quaint and super-fun amusement park by the sea. Jacinta was super happy and surprised to see her sisters and her Daddy and not super happy that she wasn't coming too. It was a bit sad that she couldn't be there, but it was so very therapeutic for the big girls (and us) to have fun with both their parents at once.
It was also World Down Syndrome Awareness Day. It was all over my Facebook news feed. I don't have much more information to give you all than I'm already giving on a daily basis, so I don't really need a special day to raise everyone's awareness. I think Jacinta has the respect of a lot of people and that's the purpose of being aware of a condition. If Jacinta is people's definition of Down syndrome then that's a good thing. (So long as Jacinta is not defined by people's erroneous assumptions about Down syndrome.)
I have to say I don't really like the odd socks thing and I won't be doing that. I don't like to raise awareness by using something that ordinarily shows you're not operating at 100%. Showing up to work with odd socks would gain you some degree of ridicule. It's a duffer who puts odd socks on. Either they didn't notice or they had no clean pairs. Either one is not the doing of a capable person.
I finally found something that explained that two socks placed heel to heel looks like a chromosome karyotype. It's a bit of a stretch for me, particularly since it took so long to find out the reason.
Anyway, I'm all for letting people know that there's a new definition for Down syndrome. I'll just keep doing it my way, one day at a time!
Saturday 22nd March
Well, as has been the pattern lately, as soon as I was getting ready for bed Miss J woke up. It was midnight and I was really really looking forward to bed!!
In my less than brilliant (sleep deprived) state, my sleep-inducing ideas were pretty thin on the ground. I was scraping the bottom of the barrel and finding I'd cleaned it out already. We tried for a couple of hours then watched the latest episode of Dr Blake's Murder Mysteries. She quite enjoyed it.
Finally she was so wrecked that a bit of the old 'spin around in a circle til their eyes shut' did the trick and she went down without argument. At 4am. The main difficulty had been that she was on the sats monitor and couldn't reach the parent bed. Normally I just take her with me and feed her to sleep with a cuddle. Works every time.
As it was she was taken off the monitor eventually so when she awoke in the wee hours I took her back to bed and we slept in til 11. Thank goodness! By the time I was ready to make toast for breakfast the lunch tray had arrived, so she had lunch for breakfast, naturally.
They gave her more things to take orally, because clearly she didn't have enough. (Or because it was medically indicated…) The antibiotics lead to fluid overload which required diuretics. The diuretics have now caused potassium loss which means she takes oral potassium twice a day (which is 5mg - lots, and really strong tasting) and another diuretic which saves potassium but is less effective as a diuretic, but at least tastes alright. It can't be done intravenously.
So now we're doing about 10ml of meds by syringe with breakfast. Not a fun time when she takes about .5ml at a go.
We had a nice day, with siblings in today. There wasn't much happening, just antibiotics and diuretics going in. Platelets today too. Waiting, waiting. Fingers x she stays asleep…...
Monday, 10 March 2014
Week 0 -1 in hospital with Luke Aemia Summary
Tuesday
So we were admitted, then told the procedure would be the next day.
We met the oncologist who encouraged us to stick with our "let's assume it's the best case scenario" viewpoint. She was quite positive and straightforward. She gave us the basic scenario about what was happening in the short term and that we'd know in a couple of days exactly what we were dealing with and that we'd begin treating as soon as we know. I asked how long we'd be in. "A couple of weeks", she said. I asked about going to England in April and got a reluctant but point blank 'nup'. (Wouldn't it just rot your socks!)
She told us that at the same time as the bone marrow aspirate they'd do a lumbar puncture, where they would put a very fine needle into the space between two parts of the lumbar spine and withdraw some fluid to test for leukaemia cells, since they often wind up in there. In the same procedure they would also put in a little chemotherapy, since it was almost a foregone conclusion that there would be cells there and when dealing with needles and spines, best to go in once and be done with it. So all of a sudden, 'go in, have a bone marrow aspirate and take it from there', was becoming, 'have a bone marrow aspirate and lumbar puncture and start chemo then stay in for two weeks'.
We were told that there was a time constraint on the bone marrow aspirate part of the procedure. Since the samples must be tested fresh and can't sit overnight, they would have to be taken while the lab was still open. This meant that Jacinta wouldn't go in for the procedure very late in the day because pathology would be shut. She was hoping to be first up so this wouldn't be an issue. Worst case scenario was that things would crop up and if it got too late it would be done on Thursday.
This doctor also told us that she was near the end of her rotation, that she was on liquids at the minute and had been on solids previously and was going to work in another area after this. In the children's oncology they have solid cancer and liquid cancer. Solid cancer is what we usually think of as cancer. It's tumours, funny moles, cysts etc. Liquid cancer is cancer of the blood. In grown ups a haematologist looks after leukaemia. In children, since most of the cancer patients have leukaemia I guess, the oncologists look after them.
The Surgery Registrar came around and told us that at the same time as they did the very quick and simple diagnostic bone marrow aspirate and lumbar puncture, he'd like to put in a permanent intravenous (IV) line with not just a single cannula but what's called a 'double lumen'. Sounds like a trick in poker or an olympic dive with a 3.1 degree of difficulty, or possibly a tarot card - but not a good one.
He said that it would be put in the jugular vein. "You know, the one in the neck that you see in vampire movies and they bite their victims and they bleed everywhere and die". With hand gestures. Seriously. He seemed Spanish. He said this permanent line is called a HICMA line. I forgot to ask what that was an acronym for.
He got us to sign the paperwork. There were several points on the front page and he summarised them for us, by saying "this basically says that I've told you that…..". I was reading it through and he did tell us all of it except the last point which is, "I understand…that I can withdraw my consent for this operation at any point up until the beginning of the operation".
I figured it was an oversight and didn't bring it up, but was glad to know that because no-one had ever told me. (Last time it was done on the phone between Kane and the surgeon and I just signed it at the hospital, assuming it was all correct. You're kind of at the mercy of the surgeons when you need open heart surgery so we pretty much just did what we were told to.)
The Haematologist came as well and got us to sign the consent for the bone marrow aspirate and lumbar puncture. She explained it all again. I was starting to feel informed when I heard things I'd heard before and understood them already.
We were shown around the ward and we got our heads around the sudden couple of weeks in hospital. I met the lady who stocks the tea room and is officer in charge of fun.
I gave Jacinta a bath and made plans to feed her before 2am since she'd be fasting the next day and hopefully be in first up. They were going to need an IV line in to give her fluids.
I don't know if I've ever blogged about the great successes we've had with putting an IV line in Jacinta's body while she's awake, but if so, it'd be a pretty short blog!
There was one in her foot when I came in to see her in the special care nursery the night she was born. They tried and failed in the NICU at the Women's and eventually gave up, using the umbiline a little bit longer and crossing their fingers it wouldn't be needed, and got lucky. They tried when we were admitted for dehydration and wound up using the NG tube for hydration instead.
They tried while she was post-op after the heart surgery and there was a MET call. They had several goes from a couple of people and no-one could find a vein anywhere. They came up with another solution to the problem.
So at the start of this admission, she had only been successfully 'cannulated' (where they put a cannula into you) once, apart from under general anaesthesia.
The night doctor had a go at putting one in. I told her it wouldn't be easy. She said she'd try once and if she couldn't she'd leave it for the higher up doctor who was on a bit later. She tried, she failed, she handballed. (International readers google AFL, handball) We waited for the next guy. He came. He tried. He tried again. He tried one more time and almost had it but it slipped out. That was his best shot. He handballed. This was about 11pm.
The next guy was a doctor from Intensive Care where they do this all the time. Any time things to do with veins or hard practical things need to be done, they ask the guys from Intensive Care to come, and they're very busy. It was either him or someone from Anaesthetics. They find veins on everyone, all day. The Intensive Care doctor brought an ultrasound machine about 1am. He found the vein. He went to cannulate and the vein disappeared. He had another look and there it was. He went to cannulate and got it in, just, hanging by a thread. He taped it, to make sure it didn't get knocked out.
He wrapped it up a bit more, just to be sure…
Just one little IV line in all those yards of wrapping.
And then it was time to feed so we didn't miss the fasting window and start transfusing some platelets. All done, time to go to bed.
Wednesday
So on Wednesday we woke up and I didn't feed her. We gave her more platelets ready for the morning procedure and when the doctors came round they said to stop the drip since it was playing up and she'd be going in for the procedure in the next couple of hours.
Then there was a delay. This began a series of asking if we were done yet and finding it was delayed by another two hours. When you're doing a 6-hour fast and you get a 2-hour delay, you never get an opportunity to eat anything, and since Jacinta was not having any fluids any other way than breastfeeding, it got to about 3pm and she hadn't eaten since 2am or had fluids since about 9am. We decided to try cup feeding or bottle feeding some watery juice. Got about 1ml in. Managed about 10ml by syringe. This was about 5pm. She was beyond hungry, tired and grumpy. At this point I also queried with the nurses about whether or not the procedure could be done at all, since this very scenario was the one in which the doctor on the first day had mentioned we'd be bumped to the next day.
I asked the nurse looking after us and she said she'd check. I didn't hear back. I waited a while and went out to the nurses' station. I asked again and a very confident senior-looking nurse told me not to worry, that they'd take the sample and just process it the next day if pathology was shut. Alarm bells!!! This is exactly what the doctor said they could not do and I told her so. She was quite surprised and said she'd check it out. So at this point I was doubtful that they could get the pathology part done in time, but even if she could, I was looking at my very out-of-sorts daughter and thinking that I did not feel at all comfortable with her going into surgery in that state. We were going in for a routine insertion and diagnostic procedure, not life-saving emergency surgery. From my observation, I would say the better you are when you go in for surgery, the better the outcome, and at this early stage in the oncology business I was not going to send her in well below par and have it all go wrong and have her wind up in ICU over a bone marrow aspirate and HICMA insertion which could wait 12 hours.
So here I started thinking about that clause on the consent form I signed and getting ready for the conversation where I was going to have to forbid them to take her into surgery. I was downstairs with my aunty having a cup of coffee when my husband rang down to tell me that the surgery had been postponed until the next day. I couldn't have heard happier news. She got fed that very minute and started being more herself. I fed her as many times as I could squeeze in before 2am, when she fasted again. We had some cousins visit that evening and they swapped surgical war stories re IV lines. I said that I didn't mind them putting a line in her head if they could find it easily. We all had a laugh about that.
Thursday
Thursday morning began and they said she'd be first on the list at 8am, barring emergencies. They came down to get her at about 7.45. We've never gone to surgery as an inpatient before, they take the whole bed, toys and all!
My husband met us just as we were about to enter the secret tunnels for patient transport. We sat in the pre-op waiting area and had several people come around and talk to us. I made sure the anaesthetist knew that she was VERY DIFFICULT to find a vein on, so that if he had a 'first try' procedure and a 'second try' procedure, he should skip those and go straight to 'find a vein at all costs'.
We killed some time, hanging out.
The surgeon came around as well and he said that they would try to put a 'double lumen' Hickman (oh- it's a Hickman!!) line in, but her vein might be too small, in which case they'd put in a single. A double lumen is where the line splits off into two ports and it looks a bit like this:
This is the double lumen held in place by what's called a butterfly clip, or a statlock. It's clipped into it and then the clip is stuck onto the skin with super industrial strength glue. If the clip comes undone while stuck on to the skin, it's really really hard to get done up again.
This clip helps the Hickman stay in place in case it gets tugged. It really does. (We found out for ourselves. Oops!) They also use the very high-tech method of pinning it to the clothes with a safety pin. Extra doubly sure. The thing with the double hickman is that you can run two things at once. With the chemo, you need to run two things at once. As we've previously mentioned, Wally is easier to find than one of Jacinta's veins at the best of times, so we were fingers X for the double lumen.
So this time they said one of us could go through to the theatre area and stay with her until she was under from the gas, which is strawberry flavoured. (I have a sneaking suspicion that Jacinta is going to have an aversion to artificial flavours by the end of this stay.)
So without giving my husband the option - well, I did kind of, but not really, I went off to hold her hand. She really didn't want to have the gas. She had it anyway. I was taken back through to the pre-op waiting area and the person taking me asked how I felt about it all. I responded in what I thought was an appropriate fashion.
"You're very chipper this morning", he replied. I told him that when your first experience is open heart surgery, pretty much anything else is a walk in the park. We went outside to wait in the very waiting room where I did all that waiting all day during Jacinta's heart surgery last year. Ah, the memories.
There are some fascinating conversations you have in that waiting room. Most parents are having subsequent operations, not the first. Most have been in and out of the hospital many times. The conditions we're talking about are many and varied. Just about every parent knows so much about what's going on that they are mistaken for medical personnel by the medical personnel.
I can't remember the illnesses we were dealing with. One was to do with growth issues. This mother had timed the surgery down to that very day to fit it in with the school holiday timetable of her 13yo daughter, since her daughter's conviction that the surgery was necessary was shaky at best and she'd refused to have it done at least once in the previous 24 hours. I don't recall the other.
So after about 2 hours they appeared at the door and told us that the double lumen was a goer. Yay! They said that the haematologist was still doing the other bit and that the IV line they put in before the procedure should be taken out. After a bit more waiting, someone took us to recovery.
Our recovery nurse was one we had for a day back in ICU after her heart op. It was nice to see a familiar face. She was the one who mentioned that it wasn't unusual for children with Trisomy 21 to present with leukaemia. Jacinta was on a bit of oxygen, as her lungs got used to being out of surgery. She was super drowsy and had a little feed, but needed to take the oxygen with her. She looked a bit like she'd been in a fight, but it was nothing compared to the heart surgery. They had put the IV cannula in her head. The nurse said that she didn't see why we should take the line out, since it was in. She figures they're hard enough to get in, why take them out?
There were two sites oozing (that's the technical term, honestly) blood a little. One at her neck, where the vampire bite was and one on her upper ribcage, under her arm, from where the Hickman was emerging. Once we got her back to the room the nurses fussed over her a little, getting her cleaned up. The doctor had a look at her and said the IV cannula in her head should come out, since it's an infection risk. Jacinta was quite squirmy and unhappy. As she moved her head from side to side, it seems the IV came out on its own. It was quite unreal for a moment, when she let off a really good yell and blood trickled out from the Hickman site and the empty cannula site in opposite directions at once. Quite the comedy of errors. We got it mopped up though and all good in the end. Then she was sleeping.
Or…
And this is the cannula that fell out…
It was a blood bath.
The oxygen stayed on then for the short term. She was allowed to hang out and have the rest of the day off. No results meant nothing to do except be very cautious of the Hickman, to allow it to graft to the inside of her skin, and recuperate.
The lumbar puncture and bone marrow aspirate left tiny little wounds. You couldn't see the lumbar puncture site at all. There were band aids over the bone marrow aspirate sites.
And we waited…..
Friday
Friday was a day off, sort of. Post-procedure they let Jacinta rest. She was still on oxygen though. She had the prongs on rather than the mask because her sats (blood oxygen saturation levels) had dropped fairly low while she was sleeping. (They like them over 95 generally, and they'd been hovering between 80-90ish.) Thankfully this time they didn't make her nose bleed.
So we kept her company, took care of her oozing Hickman site and wound up drawing a line around the ooze to see if it was getting bigger or not. We played the 'put your prongs back in' game quite a bit. She's very good at getting them out. Mostly, we waited for the results of the bone marrow aspirate and lumbar puncture. They took a very long time. In the end it was about 3pm when they spoke to us, well over 24 hours after the sample was taken. It took them that long to specify exactly what we were dealing with.
We had a sit down meeting with the team. There were 5 girls in the room and my husband. There was the Oncology Fellow, the Oncology Consultant, the Nursing Care Co-Ordinator, the Social Worker and maybe one other….quite refreshing to have a completely female team, and oddly appropriate.
They told us that she did have AML, which is the type of leukaemia we were hoping for, if we had to have it at all. They did also say that there was a thing called GATA1 which was there. I didn't really absorb what she was talking about, since I didn't get the term in the first place and was busy wondering what she'd said. (I have since read about AMkL and GATA1 being a very good thing in T21 and AML, but will check that out with them.)
They said that there is a specific protocol for treating leukaemia in T21. They said that T21 cases often have a greater sensitivity to the chemo drugs and the doses are lower. They also said that the course would go for 6 months and we'd be in for that whole time, with maybe a couple of days off here and there. They said that the success rates were greater than 85% and even said that they did have success rates as high as 100% some years ago but that the death rates from the treatment were too high so they made the treatment safer and settled so far for the 85% leukaemia cure rate.
They said that they'd start the chemo right that very afternoon and off they went to order the drugs and we sat there with the social worker for a minute (who's very nice and awfully helpful in getting various cycles organised for us, but loves to revisit certain events and do a kind of 60 minutes interview afterwards) and then on our own. There were a lot of things we were told. Someone said that people usually only remember six things and they joked that the names of the people in the room would pretty much be the six. I remembered one.
6 MONTHS!!!!!!!
So they started Jacinta on Cytarabine, Daunorubicin (which is red and makes wee red and even tears red, like stigmata) and Thioguanine. The first two were intravenous and the last was a tablet.
The doses were small and they had to run extra fluid through the line as well to keep it open. This meant she was getting about 15ml of fluid into her veins every hour.
So suddenly we were here for the long haul, with no end in sight!
Saturday
On Saturday morning, Jacinta looked a bit like the Michelin man. Her breathing was a little shallow, she was a little bit sweaty and was having a bit of trouble feeding. It hadn't been like this since before her heart op. Oh dear.
They looked at it and got the Cardiac guys up to do an echo etc and found that it wasn't the Daunorubicin hurting the heart, but fluid overload from all the things going in. Time to start the diuretics. Her sisters came in for the day and got fancy new tiaras from the stall downstairs. I bet the Michelin man never looked so fancy…
We were put back on oxygen for a bit while sleeping, since her sats were fine awake, but dropping down to about 90 during sleeps. This was just with the mask and a bit of wafting oxygen rather than it being over her face or the nasal prongs.
Sunday
It's amazing how quickly fluid can blow you up like a balloon, then losing it can shrink you back down. It took only 12 hours for Jacinta to become overloaded and it took less than 24 hours to offload all that extra fluid. The nappies were like big wet squishy boulders and if I wasn't on top of them, it would all come flowing out. Slightly toxic wee on your jeans. Lovely.
This photo was actually taken much later, after this admission was finished, but if you look around the fastening, you can see the red tinge to the name band. This is the only one of her name bands to have this tinge. Clearly the Daunorubicin is sweated out too!
Anyway, by the middle of Sunday, we had located her chin! She had a lot more energy too. Back to her old self. (Phew!)
From here the says all start to blur into each other. According to my diary there was a week of not much. She stayed on the diuretics. She was allowed off the pumps about Thursday (according to Facebook) and we started doing oral medications. She managed quite well. It's been great for her swallowing!
This was first week back at school for my eldest. My middlest's last week before kinder started. It was a week of tying up loose ends that I had planned to do without a child in hospital! I sat up and made my middlest's kinder portfolio cover and got ballet stuff organised. We got some kind of routine set up for the Mon-Fri child minding arrangements with help from some very kind family and friends. We had a go at implementing this plan for a new kind of temporary normality.
On Friday it was the last day of that rotation for all the Fellows. (Most of whom are ladies.) Our lovely Fellow named Di finished up. She rotated into Haematology and promised to look after Jacinta's blood from that angle. So Dr Di's gone to the lab. I miss her.
Jacinta had a little blood blister on her tongue this day, out of nowhere.
The next day there was one that looked like this.
And there were some petichiae on her face, like this.
So, her platelets and haemoglobin being low, she had transfusions of each in turn.
And there we are. That's the beginning of the 'how we came to be in hospital with leukaemia' story.
Everything from here is now being diarised in the numbered weekly diary entries. I hope this has provided some resourceful examples for those wondering how it all goes.
If there's anything you want me to add, leave a note in the comments and I'll put it in.
So we were admitted, then told the procedure would be the next day.
We met the oncologist who encouraged us to stick with our "let's assume it's the best case scenario" viewpoint. She was quite positive and straightforward. She gave us the basic scenario about what was happening in the short term and that we'd know in a couple of days exactly what we were dealing with and that we'd begin treating as soon as we know. I asked how long we'd be in. "A couple of weeks", she said. I asked about going to England in April and got a reluctant but point blank 'nup'. (Wouldn't it just rot your socks!)
She told us that at the same time as the bone marrow aspirate they'd do a lumbar puncture, where they would put a very fine needle into the space between two parts of the lumbar spine and withdraw some fluid to test for leukaemia cells, since they often wind up in there. In the same procedure they would also put in a little chemotherapy, since it was almost a foregone conclusion that there would be cells there and when dealing with needles and spines, best to go in once and be done with it. So all of a sudden, 'go in, have a bone marrow aspirate and take it from there', was becoming, 'have a bone marrow aspirate and lumbar puncture and start chemo then stay in for two weeks'.
We were told that there was a time constraint on the bone marrow aspirate part of the procedure. Since the samples must be tested fresh and can't sit overnight, they would have to be taken while the lab was still open. This meant that Jacinta wouldn't go in for the procedure very late in the day because pathology would be shut. She was hoping to be first up so this wouldn't be an issue. Worst case scenario was that things would crop up and if it got too late it would be done on Thursday.
This doctor also told us that she was near the end of her rotation, that she was on liquids at the minute and had been on solids previously and was going to work in another area after this. In the children's oncology they have solid cancer and liquid cancer. Solid cancer is what we usually think of as cancer. It's tumours, funny moles, cysts etc. Liquid cancer is cancer of the blood. In grown ups a haematologist looks after leukaemia. In children, since most of the cancer patients have leukaemia I guess, the oncologists look after them.
The Surgery Registrar came around and told us that at the same time as they did the very quick and simple diagnostic bone marrow aspirate and lumbar puncture, he'd like to put in a permanent intravenous (IV) line with not just a single cannula but what's called a 'double lumen'. Sounds like a trick in poker or an olympic dive with a 3.1 degree of difficulty, or possibly a tarot card - but not a good one.
He said that it would be put in the jugular vein. "You know, the one in the neck that you see in vampire movies and they bite their victims and they bleed everywhere and die". With hand gestures. Seriously. He seemed Spanish. He said this permanent line is called a HICMA line. I forgot to ask what that was an acronym for.
He got us to sign the paperwork. There were several points on the front page and he summarised them for us, by saying "this basically says that I've told you that…..". I was reading it through and he did tell us all of it except the last point which is, "I understand…that I can withdraw my consent for this operation at any point up until the beginning of the operation".
I figured it was an oversight and didn't bring it up, but was glad to know that because no-one had ever told me. (Last time it was done on the phone between Kane and the surgeon and I just signed it at the hospital, assuming it was all correct. You're kind of at the mercy of the surgeons when you need open heart surgery so we pretty much just did what we were told to.)
The Haematologist came as well and got us to sign the consent for the bone marrow aspirate and lumbar puncture. She explained it all again. I was starting to feel informed when I heard things I'd heard before and understood them already.
We were shown around the ward and we got our heads around the sudden couple of weeks in hospital. I met the lady who stocks the tea room and is officer in charge of fun.
I gave Jacinta a bath and made plans to feed her before 2am since she'd be fasting the next day and hopefully be in first up. They were going to need an IV line in to give her fluids.
I don't know if I've ever blogged about the great successes we've had with putting an IV line in Jacinta's body while she's awake, but if so, it'd be a pretty short blog!
There was one in her foot when I came in to see her in the special care nursery the night she was born. They tried and failed in the NICU at the Women's and eventually gave up, using the umbiline a little bit longer and crossing their fingers it wouldn't be needed, and got lucky. They tried when we were admitted for dehydration and wound up using the NG tube for hydration instead.
They tried while she was post-op after the heart surgery and there was a MET call. They had several goes from a couple of people and no-one could find a vein anywhere. They came up with another solution to the problem.
So at the start of this admission, she had only been successfully 'cannulated' (where they put a cannula into you) once, apart from under general anaesthesia.
The night doctor had a go at putting one in. I told her it wouldn't be easy. She said she'd try once and if she couldn't she'd leave it for the higher up doctor who was on a bit later. She tried, she failed, she handballed. (International readers google AFL, handball) We waited for the next guy. He came. He tried. He tried again. He tried one more time and almost had it but it slipped out. That was his best shot. He handballed. This was about 11pm.
The next guy was a doctor from Intensive Care where they do this all the time. Any time things to do with veins or hard practical things need to be done, they ask the guys from Intensive Care to come, and they're very busy. It was either him or someone from Anaesthetics. They find veins on everyone, all day. The Intensive Care doctor brought an ultrasound machine about 1am. He found the vein. He went to cannulate and the vein disappeared. He had another look and there it was. He went to cannulate and got it in, just, hanging by a thread. He taped it, to make sure it didn't get knocked out.
He wrapped it up a bit more, just to be sure…
And then it was time to feed so we didn't miss the fasting window and start transfusing some platelets. All done, time to go to bed.
Wednesday
So on Wednesday we woke up and I didn't feed her. We gave her more platelets ready for the morning procedure and when the doctors came round they said to stop the drip since it was playing up and she'd be going in for the procedure in the next couple of hours.
Then there was a delay. This began a series of asking if we were done yet and finding it was delayed by another two hours. When you're doing a 6-hour fast and you get a 2-hour delay, you never get an opportunity to eat anything, and since Jacinta was not having any fluids any other way than breastfeeding, it got to about 3pm and she hadn't eaten since 2am or had fluids since about 9am. We decided to try cup feeding or bottle feeding some watery juice. Got about 1ml in. Managed about 10ml by syringe. This was about 5pm. She was beyond hungry, tired and grumpy. At this point I also queried with the nurses about whether or not the procedure could be done at all, since this very scenario was the one in which the doctor on the first day had mentioned we'd be bumped to the next day.
I asked the nurse looking after us and she said she'd check. I didn't hear back. I waited a while and went out to the nurses' station. I asked again and a very confident senior-looking nurse told me not to worry, that they'd take the sample and just process it the next day if pathology was shut. Alarm bells!!! This is exactly what the doctor said they could not do and I told her so. She was quite surprised and said she'd check it out. So at this point I was doubtful that they could get the pathology part done in time, but even if she could, I was looking at my very out-of-sorts daughter and thinking that I did not feel at all comfortable with her going into surgery in that state. We were going in for a routine insertion and diagnostic procedure, not life-saving emergency surgery. From my observation, I would say the better you are when you go in for surgery, the better the outcome, and at this early stage in the oncology business I was not going to send her in well below par and have it all go wrong and have her wind up in ICU over a bone marrow aspirate and HICMA insertion which could wait 12 hours.
So here I started thinking about that clause on the consent form I signed and getting ready for the conversation where I was going to have to forbid them to take her into surgery. I was downstairs with my aunty having a cup of coffee when my husband rang down to tell me that the surgery had been postponed until the next day. I couldn't have heard happier news. She got fed that very minute and started being more herself. I fed her as many times as I could squeeze in before 2am, when she fasted again. We had some cousins visit that evening and they swapped surgical war stories re IV lines. I said that I didn't mind them putting a line in her head if they could find it easily. We all had a laugh about that.
Thursday
Thursday morning began and they said she'd be first on the list at 8am, barring emergencies. They came down to get her at about 7.45. We've never gone to surgery as an inpatient before, they take the whole bed, toys and all!
My husband met us just as we were about to enter the secret tunnels for patient transport. We sat in the pre-op waiting area and had several people come around and talk to us. I made sure the anaesthetist knew that she was VERY DIFFICULT to find a vein on, so that if he had a 'first try' procedure and a 'second try' procedure, he should skip those and go straight to 'find a vein at all costs'.
We killed some time, hanging out.
The surgeon came around as well and he said that they would try to put a 'double lumen' Hickman (oh- it's a Hickman!!) line in, but her vein might be too small, in which case they'd put in a single. A double lumen is where the line splits off into two ports and it looks a bit like this:
This is the double lumen held in place by what's called a butterfly clip, or a statlock. It's clipped into it and then the clip is stuck onto the skin with super industrial strength glue. If the clip comes undone while stuck on to the skin, it's really really hard to get done up again.
This clip helps the Hickman stay in place in case it gets tugged. It really does. (We found out for ourselves. Oops!) They also use the very high-tech method of pinning it to the clothes with a safety pin. Extra doubly sure. The thing with the double hickman is that you can run two things at once. With the chemo, you need to run two things at once. As we've previously mentioned, Wally is easier to find than one of Jacinta's veins at the best of times, so we were fingers X for the double lumen.
So this time they said one of us could go through to the theatre area and stay with her until she was under from the gas, which is strawberry flavoured. (I have a sneaking suspicion that Jacinta is going to have an aversion to artificial flavours by the end of this stay.)
So without giving my husband the option - well, I did kind of, but not really, I went off to hold her hand. She really didn't want to have the gas. She had it anyway. I was taken back through to the pre-op waiting area and the person taking me asked how I felt about it all. I responded in what I thought was an appropriate fashion.
"You're very chipper this morning", he replied. I told him that when your first experience is open heart surgery, pretty much anything else is a walk in the park. We went outside to wait in the very waiting room where I did all that waiting all day during Jacinta's heart surgery last year. Ah, the memories.
There are some fascinating conversations you have in that waiting room. Most parents are having subsequent operations, not the first. Most have been in and out of the hospital many times. The conditions we're talking about are many and varied. Just about every parent knows so much about what's going on that they are mistaken for medical personnel by the medical personnel.
I can't remember the illnesses we were dealing with. One was to do with growth issues. This mother had timed the surgery down to that very day to fit it in with the school holiday timetable of her 13yo daughter, since her daughter's conviction that the surgery was necessary was shaky at best and she'd refused to have it done at least once in the previous 24 hours. I don't recall the other.
So after about 2 hours they appeared at the door and told us that the double lumen was a goer. Yay! They said that the haematologist was still doing the other bit and that the IV line they put in before the procedure should be taken out. After a bit more waiting, someone took us to recovery.
Our recovery nurse was one we had for a day back in ICU after her heart op. It was nice to see a familiar face. She was the one who mentioned that it wasn't unusual for children with Trisomy 21 to present with leukaemia. Jacinta was on a bit of oxygen, as her lungs got used to being out of surgery. She was super drowsy and had a little feed, but needed to take the oxygen with her. She looked a bit like she'd been in a fight, but it was nothing compared to the heart surgery. They had put the IV cannula in her head. The nurse said that she didn't see why we should take the line out, since it was in. She figures they're hard enough to get in, why take them out?
There were two sites oozing (that's the technical term, honestly) blood a little. One at her neck, where the vampire bite was and one on her upper ribcage, under her arm, from where the Hickman was emerging. Once we got her back to the room the nurses fussed over her a little, getting her cleaned up. The doctor had a look at her and said the IV cannula in her head should come out, since it's an infection risk. Jacinta was quite squirmy and unhappy. As she moved her head from side to side, it seems the IV came out on its own. It was quite unreal for a moment, when she let off a really good yell and blood trickled out from the Hickman site and the empty cannula site in opposite directions at once. Quite the comedy of errors. We got it mopped up though and all good in the end. Then she was sleeping.
The oxygen stayed on then for the short term. She was allowed to hang out and have the rest of the day off. No results meant nothing to do except be very cautious of the Hickman, to allow it to graft to the inside of her skin, and recuperate.
The lumbar puncture and bone marrow aspirate left tiny little wounds. You couldn't see the lumbar puncture site at all. There were band aids over the bone marrow aspirate sites.
Friday
Friday was a day off, sort of. Post-procedure they let Jacinta rest. She was still on oxygen though. She had the prongs on rather than the mask because her sats (blood oxygen saturation levels) had dropped fairly low while she was sleeping. (They like them over 95 generally, and they'd been hovering between 80-90ish.) Thankfully this time they didn't make her nose bleed.
So we kept her company, took care of her oozing Hickman site and wound up drawing a line around the ooze to see if it was getting bigger or not. We played the 'put your prongs back in' game quite a bit. She's very good at getting them out. Mostly, we waited for the results of the bone marrow aspirate and lumbar puncture. They took a very long time. In the end it was about 3pm when they spoke to us, well over 24 hours after the sample was taken. It took them that long to specify exactly what we were dealing with.
We had a sit down meeting with the team. There were 5 girls in the room and my husband. There was the Oncology Fellow, the Oncology Consultant, the Nursing Care Co-Ordinator, the Social Worker and maybe one other….quite refreshing to have a completely female team, and oddly appropriate.
They told us that she did have AML, which is the type of leukaemia we were hoping for, if we had to have it at all. They did also say that there was a thing called GATA1 which was there. I didn't really absorb what she was talking about, since I didn't get the term in the first place and was busy wondering what she'd said. (I have since read about AMkL and GATA1 being a very good thing in T21 and AML, but will check that out with them.)
They said that there is a specific protocol for treating leukaemia in T21. They said that T21 cases often have a greater sensitivity to the chemo drugs and the doses are lower. They also said that the course would go for 6 months and we'd be in for that whole time, with maybe a couple of days off here and there. They said that the success rates were greater than 85% and even said that they did have success rates as high as 100% some years ago but that the death rates from the treatment were too high so they made the treatment safer and settled so far for the 85% leukaemia cure rate.
They said that they'd start the chemo right that very afternoon and off they went to order the drugs and we sat there with the social worker for a minute (who's very nice and awfully helpful in getting various cycles organised for us, but loves to revisit certain events and do a kind of 60 minutes interview afterwards) and then on our own. There were a lot of things we were told. Someone said that people usually only remember six things and they joked that the names of the people in the room would pretty much be the six. I remembered one.
6 MONTHS!!!!!!!
So they started Jacinta on Cytarabine, Daunorubicin (which is red and makes wee red and even tears red, like stigmata) and Thioguanine. The first two were intravenous and the last was a tablet.
The doses were small and they had to run extra fluid through the line as well to keep it open. This meant she was getting about 15ml of fluid into her veins every hour.
So suddenly we were here for the long haul, with no end in sight!
Saturday
On Saturday morning, Jacinta looked a bit like the Michelin man. Her breathing was a little shallow, she was a little bit sweaty and was having a bit of trouble feeding. It hadn't been like this since before her heart op. Oh dear.
They looked at it and got the Cardiac guys up to do an echo etc and found that it wasn't the Daunorubicin hurting the heart, but fluid overload from all the things going in. Time to start the diuretics. Her sisters came in for the day and got fancy new tiaras from the stall downstairs. I bet the Michelin man never looked so fancy…
We were put back on oxygen for a bit while sleeping, since her sats were fine awake, but dropping down to about 90 during sleeps. This was just with the mask and a bit of wafting oxygen rather than it being over her face or the nasal prongs.
Sunday
It's amazing how quickly fluid can blow you up like a balloon, then losing it can shrink you back down. It took only 12 hours for Jacinta to become overloaded and it took less than 24 hours to offload all that extra fluid. The nappies were like big wet squishy boulders and if I wasn't on top of them, it would all come flowing out. Slightly toxic wee on your jeans. Lovely.
This photo was actually taken much later, after this admission was finished, but if you look around the fastening, you can see the red tinge to the name band. This is the only one of her name bands to have this tinge. Clearly the Daunorubicin is sweated out too!
Anyway, by the middle of Sunday, we had located her chin! She had a lot more energy too. Back to her old self. (Phew!)
From here the says all start to blur into each other. According to my diary there was a week of not much. She stayed on the diuretics. She was allowed off the pumps about Thursday (according to Facebook) and we started doing oral medications. She managed quite well. It's been great for her swallowing!
This was first week back at school for my eldest. My middlest's last week before kinder started. It was a week of tying up loose ends that I had planned to do without a child in hospital! I sat up and made my middlest's kinder portfolio cover and got ballet stuff organised. We got some kind of routine set up for the Mon-Fri child minding arrangements with help from some very kind family and friends. We had a go at implementing this plan for a new kind of temporary normality.
On Friday it was the last day of that rotation for all the Fellows. (Most of whom are ladies.) Our lovely Fellow named Di finished up. She rotated into Haematology and promised to look after Jacinta's blood from that angle. So Dr Di's gone to the lab. I miss her.
Jacinta had a little blood blister on her tongue this day, out of nowhere.
The next day there was one that looked like this.
And there were some petichiae on her face, like this.
So, her platelets and haemoglobin being low, she had transfusions of each in turn.
And there we are. That's the beginning of the 'how we came to be in hospital with leukaemia' story.
Everything from here is now being diarised in the numbered weekly diary entries. I hope this has provided some resourceful examples for those wondering how it all goes.
If there's anything you want me to add, leave a note in the comments and I'll put it in.
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