Weeks 24-37... Diary Luke Aemia

OK. So we were home and waiting to start chemo for round 6.
We saw the oncologist about our bone marrow results. (Prior to this one we'd had the previous ones explained by the Fellow. She had explained that although ours weren't super dooper totally all gone, they had been going down and were expected to be all gone by the next one.) Our Consultant said that they were inconclusive. Our counts were OK so we could start chemo.

Ding ding.

We spent the week with the Baxter attached and had the nurse come out to our place to change it over once a day.

This is the very imaginatively named Baxter. (As previously mentioned, made by Baxter, like so many other things which are not called a Baxter...) It runs over 24 hours. The rate at which it runs is to some degree controlled by the temperature so in summer it can finish early. The nights when I put it inside Jacinta's sleeping bag it finished early and the nights I didn't have one on (being winter) it finished late.

The one in this picture is almost finished. The sides of the little balloon inside are still slightly curved. When it's all used up it's straight up and down about the width of the little white tube you can see just inside the balloon. That's the last bit of a day's worth of chemo.  I think this photo was taken because that was the last bit of the last round of chemo of the entire protocol!

So that was round 6 begun....but it's not over til it's well and truly over.
Around day 14 we were in for an appointment which was meant to be super quick, in and out before the mid-morning rush. We changed the line bits and pieces and had bloods taken. Those tricky bloods were a bit low so we had to stay for a transfusion.  So much for a quick in and out. School pickup was cancelled.

Wouldn't you know it,  halfway through the transfusion Jacinta's temp made it up to 38.1 degrees. A 'temperature' is 38 or over. When your neutrophils are down (which they were) and you get a temp (which this technically was) you score a one-way ticket onto the ward and 48hrs' antibiotics at least. I commented to the nurses that I didn't bring anything with me. "You should have had the suitcase packed in the boot! Then this would never have happened!", they replied. (Oncology Rule #1.)

So my youngest two daughters and I were eventually transferred onto the ward. Not our favourite ward, the other one. We went through the rabbit warren of back halls and tunnels to the "other ward". As soon as we entered our room, Jacinta cracked it. The decor in the rooms on the 4th floor is slightly different to the decor on the 2nd floor. Clearly we were back in the bad ward and she knew it. Someone wasn't going to let me put her down for a few days!

Thankfully I'd had my iphone repaired a few days earlier and my husband and eldest brought in supplies, including brand new undies and a top she had chosen especially for me (with kisses all over it). The nurses on this stay were really good and we didn't have any of the issues we had encountered the last time. We also made it down to our home ward pretty quickly. Within 5 days we were downstairs again. Then I saw a sign put up in our bathroom.......

It was labelled "Helpful Hints". Some of the helpful hints were as follows (I shall paraphrase):

Patient bed must stay within the designated area and patient is NOT to sleep on the parent sofa.

Co-sleeping is NOT permitted for children under 2 years.

Shared room bathrooms are for PATIENT USE ONLY........

If these were hints, I hate to think what kind of hints this person was dropping around birthday time. (Buy me a toaster or I'll PUNCH YOU IN THE FACE!)

As if by magic, some ladies dropped into my room unannounced, with vests on, and they said they were there to ask me about my experience at the hospital and how it had all been etc. I couldn't have timed it better. Feeling a little like the 'real' princess from the princess and the pea, I explained that I was super happy and couldn't fault our treatment or experience overall, but that there was this sign that had just gone up.......and they thought that they didn't really sound like hints at all either.

So I don't know if it went up to anyone in particular, but I hope someone listened.
I did also ask to speak to the nurse running the ward, the ANUM. She came past and said exactly what the sensible nurse upstairs had said, that it was something they needed to have a discussion about on an individual basis and they would make a note that we'd had the conversation.

It is a little frustrating that the issue of safety really hasn't been acknowledged, that no-one I've spoken to seems to rate the likelihood of falls and brain injury up there with the likelihood of death occurring in an 18-month-old.   Anyway, in our case, it was sorted. As it was it really wasn't an issue that admission anyway since there was pretty much nothing wrong with Jacinta at all. It really was a classic case of one wrong temp (which happened at just the wrong moment, since it was so quick and so barely even a temp that I wouldn't have noticed it at home) and she was in hospital for the long haul.

So we hung out in hospital, pretending to be sick and waiting for neutrophils. Watching hair grow....

Jacinta started a new game, entitled "Let's crawl out to the nurses' station to have a chat" which she played as often as she could, and which was quite entertaining since she was attached to the pole the whole time. She also mastered the art of posting small things into slots, which was super fun.

I also was trying to find out the details of the bone marrow aspirate. The 'inconclusive' thing was bugging us. I asked nurses here and there to find out for me. One day the Fellow dropped in on her rounds with the Head of Oncology (who is a Consultant, like ours, but in charge overall). The Head of Oncology explained that the place reading the marrow couldn't read it properly because all their patients are usually elderly and that our hospital was sending someone over there for 6 months to train them on baby bone marrow and that we'd have to do it again at the end of treatment. It was all a little bit vague, but it was better than 'inconclusive'.

During this admission we also had a strange virus go through the house. One day our middlest did a vomit. Just one. We thought it was just a one-off because about 5 days later, when the family were visiting, our eldest complained of feeling sick and I thought she was being dramatic but sent them home with a couple of vomit bags just in case. As soon as she made it out of the ward, she vomited. (Into the bag. Nice.). Loads of hand gel and a few more supplies in tow and she left, looking very pale. Didn't vomit again.

Eventually the absolute tedium was relieved by our discharge. We had neutrophils. We were allowed out. Our last discharge from our last round of chemo from our only illness on the list. Going home to wait out the obligatory time til her marrow would recover and we'd have the Hickman line out. Yay!!

This coincided with our Cardiology appointment, scheduled months before for that very afternoon. We'd been having semi-regular scans all year, before doses of Daunorubicin, the red chemo drug which affects heart function in some cases.  She'd been pretty fine on all of these, but during the previous admission for RSV and bronchiolitis the echo had shown more leakage than before. We fronted up to the Cardiologist. Jacinta vomited in the waiting room.

We saw the Cardiologist. He told us that the leakage was looking mild to moderate on one side and moderate to severe on the other. This meant she would need surgery to repair the valves. Before the end of the year.

WTF?????

Jacinta vomited again.

I felt about the same.

All of a sudden we'd gone from pretty much done with hospital altogether and a slight chance of needing surgery a few years down the track, to "get ready, open heart surgery imminent!".

And this is part of the reason I didn't finish this diary. I was completely stunned. It took me about a week to come out of the haze of the shock of it all. It's a bit strange, because it wasn't anything, just words. But I could only think of how it was when she had the heart surgery last time, the intensity of the whole thing. The time in intensive care, the amount of pain it must have been, the morphine, the constipation, the endless medications, the nearly being on death's door, the recovery period. The difference also was that at the time there was no other option. She was clearly puffing and panting a lot of the time and needed the surgery. But to look at her now, you'd never know she had any issue. Here and there purple hands or feet, a bit of mottled skin maybe, but nothing else. How could I look her in the eye and tell her she needed to go through that all again.

The thing with having a child who's nearly 2 is that you don't have to tell them. They already heard it the first time. A few weeks after this conversation I was alone with Jacinta and this was still bothering me. Young children who are non-verbal say a lot with their eyes. You can ask them questions and offer suggestions and when you get the suggestion right, they stare right at you, fix you with their gaze and don't let go until they know you know, you got it right.  This was one of those conversations. She was not happy about the surgery. She was scared about the surgery. This was abundantly clear. And remember, this is a girl who has been under a general anaesthetic at least half a dozen times this year. She knows what surgery is. She knows who her cardiologist is and she knows what sort of surgery he talks about, as opposed to what surgery the oncologists talk about. She knows.

So I saw the oncologist a week or so later. The vagueness of the bone marrow issue was still bugging us so I asked again. She gave us the details. The AML cells of Jacinta's had jackets (they must be cold!) which had markers (like patterns on the jackets) that could not be deciphered by the machine at our hospital. The big main cancer hospital had the better machine, but their patients with AML were pretty much all elderly people. There were some cells in the sample which just looked like baby bone marrow cells to the children's hospital people, but that looked 'abnormal' to the people at the main cancer hospital since elderly bone marrow doesn't look like that.

So the only way to really determine whether or not the bad cells were gone was to do another bone marrow in a few months and see if there were more of them or not. Woohoo for imprecise science! (The more you do in medical spheres, the more you realise how experimental it all is and how much they just make it up and hope it works.)  Ah well.

So I told her that we were now looking at surgery ASAP, pretty much as soon as the bone marrow aspirate results were back and OK. She said they didn't need to wait for that and when I asked about the Hickman and the need for a central line for the heart op, the plan became to leave the Hickman in til the heart op and bring the heart op forward to ASAP, regardless of the result of the bone marrow aspirate.

So we didn't have the Hickman out that day. We went home to wait.

A few weeks later I got a call from the Cardiologist saying that they'd discussed Jacinta at the monthly meeting and the Surgeon had said he wanted to wait until next year, when she was well and truly clear of the chemo, leukaemia etc.

But of course, as soon as the school holidays had started, we came back from a few days at the farm and had a temp of 39.4! Still having the Hickman in, one call to our nurse co-ordinator confirmed that we'd be coming in to hospital via emergency, in case the line was the problem. It was so full that there was nowhere for us to stay the night. We slept in emergency.  Made it up to the ward in time to have a shower,  have lunch and be sent home again, thinking it was just a virus.  She had been snotty.

We came in and saw the Oncology guys as planned the next day, for follow-up and line dressing changing etc. She had received the message from the heart guys. She scheduled the bone marrow in and said we could have the Hickman out if that came back ok, the day we see her next. There are two options for under 2yos, using a kind of hypnotic drug in Day Oncology or doing it under gas in the theatre. They don't do gas for under 2s in Day Onc. I said 'no' to the hypnotic, since I don't want it any harder than it already will be to recover that memory one day when she needs to. Those drugs can really stuff around with your ability to recall, in terms of Dianetics. She said that was fine, we'd just do it in theatre and we'd get a call re the bone marrow.

We left our appointment and had a bit of lunch downstairs and just as we were about to head off somewhere else the phone rang. It was our nurse co-ordinator. She told us that the blood culture they'd taken two days earlier had come back positive and we had to be admitted and given antibiotics within an hour or two. We hung around and eventually had to come in via emergency again - which meant walking around the hospital and in via a different door. Politics, apparently.

We landed in the ward next to our home ward, which was a breath of fresh air, with a box of blocks from the boot of the car and a very thin selection of clothes from the bag I'd packed a couple of days earlier and then emptied all over the bed, and ordered my husband to re-pack and bring in. Being nearly on our ward made things much easier, since the nurses are used to our super-informed and hands-on ways and the doctors are very close by. We had to stay in another three nights, got to watch the AFL Grand Final there, and when they isolated the bug they found they could send us home and give us daily injections of antibiotics for a further week.

That was last week. While in hospital that time I saw our old doctor on his way past our  room. They rotate every few months and he's gone to the area where our original Fellow went.  He mentioned that Jacinta was on the list for a bone marrow on Thursday. I waited to hear from our nurse co-ordinator re this and figured by Wednesday that it wasn't happening. Should have rung, because I heard about 5pm on Wednesday from the nurse in Day Onc that she was indeed on the list for the next day. Despite still having a touch of Paraflu (not flu, a cold virus pretending to be flu), and being on antibiotics, she was going in. We went on in and had the bone marrow. (There was a query from the anaesthetists, but they gave her a slightly deeper anaesthetic to ensure there were no spasms going on that shouldn't. You could definitely tell it was a stronger anaesthetic. She was still groggy the next day, which she usually isn't from just the gas.)

She took a little while to get her sats back to the right range but within an hour or so, once she'd woken up properly she was right.

And today we had the last dose of antibiotic.

So now we're waiting.  It's about two weeks until we get the bone marrow results. No news is good news. Here's hoping we front up fasting to our next appointment and get an 'all clear' and a Hickman line removed.

Fingers X!!!