Sunday, 2 February 2014

Knock knock...

My daughters are in love with 'knock knock' jokes.
Their favourites are various types of cow, mostly interrupting cow and surprising cow, but they'll make them up on almost any subject.
(eg. "Knock knock"
        "who's there?"
        "knock knock"
        "who's there?"
        "knock knock"
        "WHO'S THERE??"
        "knock knock"
        "just tell me who's there!!!"
        "knock knock is there!"
        "oh, for goodness sake!!  That's enough knock knock jokes!!!")

Recently I've been trying to remember an actual knock knock joke to give them an example of how they normally go. It's been so long since I heard a good one that I had actually forgotten how they go!

I finally got one!! Ready?

Knock knock!
(Who's there?)
(Luke who?)
Luke Aemia !!
(har de har har chortle chortle chortle, oh how clever you are…)

So, yes. Luke Aemia turned up last Monday. Somewhat unexpectedly and very much uninvited.
But, he's a friend of the family…..
(We're going to try and poison him and hope he won't come back. Shhh…..)

And now we're cancer patients, in for a long stretch, that big cliche of horridness that parents throughout the world touch wood that they'll never be.

So I think it will be useful to document a lot of this, because when you've never done it before it's a lot to take in all at once!

I also found this week that I'm by no means the only parent of a child who had blood issues at birth who didn't have a clue about it and I might have just freaked some people out by mentioning our story on one of our Facebook groups… I'm going to write it all up here for parents to read and find out.

So, at the beginning, Jacinta had several things wrong. The main things to worry about were her heart condition and her feeding. The white cells sorted themselves out fairly quickly and the platelets needed a couple of transfusions before they righted themselves.

This stuff was such a passing thing that it was forgotten about once it was ticked off the list. The attitude was "these are all things that can happen when a baby is born with Trisomy 21 and they sort themselves out and you go home….except the heart condition".

So they sorted out and we had the heart op and that was it as far as I was concerned. Now we were free to go on our merry way and start working hard to ensure Jacinta's development was as close to on par with typical kids as possible.

Then one day about mid-last year I was on one Facebook group for families and friends of children with Trisomy 21. It's mostly a bunch of Mums with children of varying ages. One mum posted a very interesting post from another page (1) which talked about transient leukaemia in infants with T21 and how they can get leukaemia later in childhood.  This rang a bell because I remembered that leukaemia was to do with white blood cells and I remembered that hers were dodgy. I went back over her discharge summary and found "transient myeloproliferative disorder". "That's not transient leukaemia", I thought. I went to look up the difference. I found that they were two names for the same thing.

So I started researching things in quiet stolen moments about leukaemia, understanding a bit about the condition, the types, the prognosis, and the symptoms.

I saw the paediatrician and forgot to ask about it, since it was a different person.
My ears pricked up a little at the mention of a slightly enlarged liver and spleen - like the night she was born, but the paediatrician made no other mention of it.

Around late September Jacinta suddenly had a nose bleed. It was enough to drip out of her nose a bit, but not enough to keep running. It was more than a scratch but less than a continuous nose bleed.
I thought this was strange for a 10 month-old and I took her to the Dr. The Dr was not keen to inflict blood collection on a small child without just cause. He said I could if I wanted to, or I could wait and see if it happened again. I wasn't keen either and since he wasn't terribly concerned, I thought I'd wait. I asked for the arbitrary number of blood noses that would justify a test and he said, 'maybe three?'.

I went away and noticed that she had some large bruises on her forehead which I didn't recall her bumping. I mentioned this to the health nurse and she thought it was a bit odd. Over the next couple of months we had lots of end of year  and Christmas things and then Jan brought plenty of family things.
During this time, Jacinta became quite disinterested in eating solids and often would just lay her head on the high chair tray instead. She seemed a bit more tired than usual. She was also teething so these things could have been that.

I noticed a few tiny red spots on her skin, not like pimples or a raised rash, but like colour on the skin. The first couple were tiny, like a single hundred and thousand. A couple more popped up that were about the size of a long single sprinkle. These are called petechiae. (That's plural.)
The one on her cheek here in centre screen is an example. 
We had a few really hot days and I noticed that although the room was cool, she would be sweaty after a breastfeed.
All these things were still things that could happen for one of many reasons.
Then she started having difficult stools and she passed one which had fresh blood on it.
At that point I decided it was three. I went back to the Dr and got the slip for the bloods.

The interesting thing throughout all this is that at no point did anyone say, "oh yes, we should be wary of leukaemia since she has Trisomy 21 and had transient leukaemia at birth".

The nearest thing is when I went to the Cardiologist and he found slightly more leaking in the AV valve and an enlarged ventricle. He asked if she had any other symptoms and I mentioned the unrelated bleeding stuff. He rewrote the bloods slip so that they could get done that day and told me to get them done that day. I don't know if he suspected, but I think he may have done. When I spoke to him later that day he apologised for giving me bad news and I said that it was ok since I kind of knew it was coming. He said he kind of knew that I kind of knew, so I guess he suspected from the word 'go'.

So here's the thing. At birth Jacinta had transient leukaemia and no-one told us. On her discharge summary I believe it mentions transient myeloproliferative disorder. Same thing. Still no-one mentioned it, to my memory. This was being monitored for a couple of weeks in intensive care. There was time to mention it, yet no-one did.

Then when we visited the paediatrician she never mentioned it in her recap of the last couple of months.  Then at every visit she had the opportunity to mention it, but didn't. The age for onset of leukaemia is typical from 1-30 months with the average being about 16 months (2) . There's not really a window during which you should not be looking out for it.

10% -30% of children who have had transient leukaemia go on to develop leukaemia later on (2). This is not a tiny chance. If I was in a raffle with a 10% -30% chance of winning, that'd be pretty good.

So it baffles me that the first time I heard any medical professional talk about the incidence of children with Trisomy 21 coming in with leukaemia was the nurse in recovery after Jacinta had just had her bone marrow aspirate. She said it's not at all unusual to see. The Oncology guys certainly know about it. They have a separate treatment protocol and everything and didn't have to check any notes before telling us what it was.

So why does no-one else talk about it? Behind the times maybe?

Anyway, I am super glad that I knew to look out for it, since I tend to err on the side of "don't be silly, it's probably nothing", and if you listen to that post at (1) then it can move pretty quickly and some children can die of it undiagnosed within a couple of months….but let's not go there.

As I read in one article, "Most children with AML and Down syndrome can be cured of their leukaemia." (3) So that is what we'll focus on and just set about getting better. 

I've put a couple of links down here.

The first is the post I read that tipped me off. It's a little scary, but not a bad summation in layman's terms.


This second one is the one with the groovy statistics. Take a medical dictionary with you when you open this one.


This one has excellent colour pictures and explains just about everything to do with childhood acute AML in easy terms and bullet-point lists.


And, not to insult the intelligence of my readership but just to make sure there is absolutely no misunderstanding, I do not have any kind of medical degree. Despite the fact that many of the nurses think I am, I am not trained as a medical professional. What I say about Jacinta has no bearing on your child or his/her symptoms, diagnosis or prognosis. I'm just sharing to help shed light on things and hopefully help a child get help sooner, or at all.

I've been taking some pictures along the way, of varying quality. I'll be blogging as I go and showing pictures as much as possible to help people know what to expect.

And meanwhile we'll kill time in here as best we can!

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