Monday, 10 March 2014

Week 0 -1 in hospital with Luke Aemia Summary


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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


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

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

We killed some time, hanging out.

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

6 MONTHS!!!!!!!

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

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


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

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

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


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

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

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

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

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

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

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

The next day there was one that looked like this.

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

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

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

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

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

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