Thursday, 23 January 2014

A bump in the road….

So here I was a week or so thinking about how little I've had to blog about of late and wondering what on earth to blog about, other than what we ate today or how many times we went down the crawling track.

Careful what you wish for…..

So here's the long version.

If you've read the first three posts, you may recall that when Jacinta was in Intensive Care straight after birth she had issues with her platelets and her white cells. I believe I referred to them by their technical name, 'dodgy' white cells.

The doctors did explain what was happening, that there were too many immature white blood cells that shouldn't be there, and that this should resolve on its own, which it did. Likewise the platelets were too low, should resolve on their own and slowly, but surely did.

It wasn't until several months down the track, when I had found the Trisomy 21 Facebook group for Australia that someone mentioned that this is called transient leukaemia and that it's not uncommon for T21 children who have had transient leukaemia to develop full-blown leukaemia at a later point.  This of course caught my ears and a google told me that what Jacinta had did fit the bill for the former and so I should keep it in the back of my head that the latter may at some point occur.

So when Jacinta had a blood nose a couple of months ago, which is weird for anyone in our family, let alone a baby, I sat on it for a day or two then took her to my GP. My GP is an old friend, one of my ex-bosses actually, and I know he knows what he's doing. He's good at keeping his patients grounded and sensible. I asked him what he'd do and when he'd start doing something about it, he said I could get a blood test if I wanted to…. I figured that if he didn't have bells going off then it was ok to wait. When I asked to have a ballpark figure on the amount of times that this should happen before he'd definitely investigate, he said 'maybe three?'.

So I went away and kept a close eye on Jacinta.  A week or two later she had some decent bruises on her forehead.  I didn't see what caused them, but figured she'd boomped her head when trying to crawl on the hard floor or on the bottom of the dolls' house, which she rolls into sometimes.

When I saw the Maternal and Child Health Nurse (MCHN) I mentioned these things to her and she said 'that's strange, I'd keep an eye on that…'. So I kept keeping an eye on that.

Then it was end of school and Christmas and there hadn't been any more bleeding or bruising, but Jacinta took to resting her head on the high chair tray instead of eating. She did also have the odd tiny red spot - like a blood blister or a pen mark on her skin.  It was nearly her birthday. Her paediatrician appointment was coming up at the end of Jan. I thought I'd ask again to get those bloods done when I got the thyroid test done for her paed appointment.

Soon after this she had some difficulty with bowel motions and passed a very large stool, covered in fresh blood. I went to see the GP the next day. We ordered the bloods but they couldn't be done at the blood clinic. It had to be at the hospital. The only person who has ever found a vein without drama is one particular blood nurse at the Children's. I was going in for a cardio appointment soon so I saved the slip and took it with me.

So yesterday was our appointment. We had the usual diagnostics, echocardiogram (heart ultrasound), ECG (tracing of the rhythm of your heartbeat), blood oxygen saturation and blood pressure. Then we saw the cardiologist. I love our cardiologist. He just does everything right.

He mentioned that Jacinta's heart valve was leaking slightly more and that her left (I think) ventricle was enlarged and that he'd monitor that further and to come back in about 3 months - when I thought we were up to yearly visits!

He asked if there was anything else going on with her and I mentioned the bleeding, and that I had the slip from the GP. He had a look at it and said he'd write it up for the Children's pathology clinic and that I should do it that day. He said he'd ring me later that day if anything showed up.

Later that afternoon my phone rang. It was a private number. I ignored it and they didn't leave a message. (Typical telemarketers.) At dinner time the home phone rang and it was a private number. I was letting it go to the keeper until my eldest answered and passed it on to me. I have her well trained and reminded her that she hadn't grilled the caller for all the info before she passed it on, because that will usually send the telemarketers screaming for the hills. The cardiologist stuck with it, however and I grabbed the phone out of her hand in a millisecond on hearing his name.

He told me that it wasn't good news, that her platelets were low, her red cells were low and her white cells were up. He almost imperceptibly paused before uttering the sentence containing the word leukaemia. He did say that they thought it was the one most often associated with Trisomy 21 and that this was very treatable with 80% of cases coming out the other side and going on to live full and happy lives.  He said that he'd spoken to oncology and that they were happy to see us about 10.30 this morning to get the ball rolling and to do a bone marrow aspirate to determine exactly what form of leukaemia we are dealing with. (From my research over the last few months I've ascertained that there are four types - actually two types of thing going on and these sub-categorised as acute or chonic.)

To be completely honest, although I knew that this was probably coming, hearing it was like being spiritually crushed by a ton of bricks. Like I had been non-physically whacked in the head with a lead piano. Almost as bad as if I'd been suddenly set upon by a thousand drop bears. Ok, not quite that bad.

All those priceless guilty feelings came on back, those ones about making Jacinta a crap body and forcing her to undergo more pain and suffering just for the privilege of being our third daughter. There was a lot of 'how do I make her do it all again and possibly worse?'. Not that I have ever promised that any time will be the last time, but 'how do I hold her still while they repeatedly stick needles in her hands and feet looking for a vein and tell her it will be over soon?'.

In my very rational stunned state I realised that I needed to organise things for the following day. I called one sister to see if she could mind the girls and figured I needed to let her know what was happening, then I rang the other sister who actually was able to mind the girls and figured I needed to let her know what was happening, then I posted on the Facebook group where I had first heard about the leukaemia possibility in the first place, then I needed to call the naturopath whose appointment we would be missing the following day (and she says she has a NAET vial for leukaemia…!), then I thought I'd better tell my parents-in-law and email the rest of my siblings and get a Facebook message to my husband's siblings and a message to Kristen and realised that half the world knew - and my husband, who was off the air for a few hours, did not.

It is somewhat unsurprising in retrospect, that I put on a DVD for the older two, let them eat ice cream cake and tidied up the house for the cleaner tomorrow rather than face the bedtime riots.  I'd gone into a mental freeze. No idea what to do next except clean for the cleaner. No mental stamina to counter arguments or do clever things to resolve conflicts. Stuff Them With Food They Will Eat and Wait Til They Fall Asleep was going to be my clever strategy for the evening.

Thankfully my very kind mother-in-law offered to drive all the way up from the farm to have a cuppa and between the two of us, bedtime happened before 10pm. Talking it all through over a cuppa certainly helped me to think straight, there's something about telling the story again and getting it straight in your head that really helps you to confront things and be a bit more capable I think.

When my husband answered my "ring me right now" message, I at least had my story straight.

So Tuesday morning I reported in to Reception E, the Oncology Day clinic. They took us over to the other side of the hospital building, like where we had stayed after the heart operation, but a floor below. They took me up to a room with a number where they said the doctor would come and talk to us. At some point here it occurred to me that if you work in Oncology and your name is Diane, it might be better not to shorten it. Then it occurred to me that you really can't win, because what if your patient's name is Anne?

At the point of arriving in the room they said that this was our room and they were just bringing in a cot. They said the bone marrow aspirate would be done tomorrow. "Are we staying overnight?", I asked. "Yes", replied the nurse who told us she was our nurse for the day.

Then the very lovely Super Oncologist came. She told us what we knew and also that there would be a lumbar puncture done and some chemotherapy administered and also a permanent IV put in to administer doses of chemo over the next few months. I asked how long we were staying in. "A couple of weeks", she said. (I hadn't brought a change of clothes for either of us.) I also asked about travelling to England in April. She shook her head. (Oh, I see. It's like that.)

So suddenly we'd gone from nearly finished with the Cardoiologist for the year the day before to Oncology inpatient about to start treatment in less than 24 hours. Crazy!!! (But in hindsight, very very good.)

So what are the bright sides?

Small children (under 3yo) with Trisomy 21 who have leukaemia usually have a form of leukaemia called AML, which is highly treatable in children with Trisomy 21. The success rate is sitting about 91% +/- 5 (so 86%-96%). This is even without a leukaemia NAET vial and supplements and assists and whatever else we can throw at it "to feel like we're doing something that helps…..". (Did I mention I got rid of the physio?)

The visiting hours in oncology are always great. Aside from rest time (12-2pm) visitors can come any time. In fact, on our first night in, the girls were picked up from what turned out to be a very long day and they asked my husband to bring them in, so in they came. We had jelly in the playroom. At midnight.

The oncology ward itself is quite relaxed. There are no tense conversations out in the corridors where a mother is being harassed about her milk supply. (A very pointless exercise) The bubbles girls have been in to blow bubbles around and there were teddies handed out, sticker books, colouring books, goodie bags…it's better than the Royal Show!

There are people swapping tales and making friends and the siblings come in and play together when they are there. It's good.

Anyway, I'll continue blogging this hospital stay through. I've already got lots left to blog because this got deleted and I had to retype half of it!

Here's Jacinta just after we found out we were inmates again!


  1. These are beautiful, honest words about a very tough subject - I truly admire your courage! You have clearly learned so much on this journey already, and this experience can only take you deeper. Please know there are many people wishing the very best for you. Take good care of yourself, and all your little (and big) angels will bathe in your sunshine!

  2. Five months in to our Leukaemia journey and I feel like I've got it together, but your story brings back so many memories of those early days. I'm really sorry you have to face this challenge, but I have witnessed what a wonderful mum you are and know that you will face this one with the strength you've faced all the others before. Our mantra is 'one day at a time'. Much love and peace to you, your husband and your beautiful girls xx

    1. Thankyou! 2 months in now and I'm getting a feel for how things go. You can never see the whole road though, can you? It always seems like you can see a tiny bit ahead at all times.