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!

Friday, 10 January 2014

What's the point?

Recently I read again an article that I first read about three years ago. At the time the subject of the article bothered me and I was incensed. Now in rereading it, I am saddened by the attitude of the parents in the article. 

The article covered the story of two Melbourne couples who were suing their hospitals for failing to diagnose their unborn children with Down syndrome. 

Originally I was incensed because they were looking at their children as a problem and I wondered how they could possibly look their children in the eye and tell them honestly, "we're suing because we were denied the opportunity to abort you". 

Now I look at the article and as well as the above I look at the reasons they give for wanting to sue. They went through pain and anxiety because their child was in intensive care and had heart issues etc. They are upset because they had the opportunity to experience negative emotion. What is that? 

It seems to me that we've reached a point in our over-litigious society (which, thankfully, is much less so than some) where we expect life to be pain-free or we get compensation, as though we buy our life experiences in a shop with some happiness guarantee attached.

My parents used to throw around that old gem, "respect your elders", from time to time. I think it was a kind of last resort, "just do what I say", kind of thing. I used to think it was a load of bollocks and that no-one much knew better than me. Of course, I was seven.  Then I was eight. Then I was nine. I kept being much righter than most people about things. I really couldn't see how age made you worthy of respect.

Then my father died, when I was 20. I learned a few things from this experience and made a few key decisions, such as never getting myself into the situation where single parenthood was likely, because I realised how good I had had it when I didn't need to feel responsible for my parents' happiness or health or wellbeing.

Then his brother died, which somehow reinforced the loss of my father and made it worse.

Then, once I was married and we decided it was time to have children, the first time I was pregnant it was confirmed because I had started to miscarry. The following two years taught me how it is when you fear you may never have children. The constant wondering about where you are in your cycle. The simultaneous grief at the beginning of a new cycle when it is certain that you aren't pregnant but at the same time relief that you don't have to think about it for a couple of days. Those years drove me half mental. Actually getting pregnant was one of those impossible things that defy the tenets of medicine but, you know, I don't care!

Then I found out a lot of things about myself (turns out I can do a really scary Mum voice - it scared my husband when he got a dose) as I changed all my ideas, one by one, about how a child ought to be raised. Here and now I apologise to my eldest for all the things I let her do that I ought not to have and all the things let her have that I ought to have said 'no' to. I also apologise to my second for any other errors of a similar nature that I have made on her part. I don't think I've had a chance to really start stuffing Jacinta up yet so I'll leave her for later!

And there have been discoveries, too about how far you can let things go before they'll really blow up in your face - not so much gas leaks as relationships - with your husband, or the landlord….all sorted now!

So then Jacinta arrived, and man oh man, was there a lesson or two to be learned. Looking at the big picture, prioritising better, chilling out about so many inconsequential things, stepping up and making myself heard, confronting dire consequences and possible eventualities, entering unknown territory without balking.

And then there was an election, and I saw these candidates who were younger than me - some of them in their early or mid-twenties, and I just couldn't take them seriously. Where had these people been? What had they been doing that so qualified them to make decisions on my behalf? I simply did not believe that they were able to do the job properly. I couldn't believe that they had seen enough or experienced enough, and it's these things, these tough things, that teach you something. It's not easy times or comfortable surroundings.

So when I hear about parents expecting to be recompensed for having the opportunity to grow and learn, I laugh a little on the inside, because the joke is really on them. By doing this they are actually robbing themselves of the opportunity to grow. They will probably always resent the situation they're in since that's what they're being paid to do. They couldn't honestly take the money if they started enjoying themselves, could they?

But that is what makes it the most sad. If they have asked for money because of pain and suffering, they have to make sure there is pain and suffering. Heaven forbid their child turn out to be healthy, charming, funny, the life of the party and well-loved by his peers. That poor child will always know, at the very least, that life is meant to be hard because of what his body has.  I hope, at the very least, that he or she learn some valuable lessons from this life they have arrived in. 

Do not spare me the pain lest I should miss the bliss of sublime comfort.
Do not spare me the riotous screaming of children lest I should expect serenity and concentration in every moment.
Do not spare me fried liver lest I should think nothing of a delicious meal. 
Do not spare me fear and anxiety lest I should take for granted peace of mind. 
Do not spare me a good drenching lest I should fail to notice the magic of a warm, sunny day. 
Do not spare me interruptions lest I should not appreciate the relief of the opportunity to do a wee in peace.
Do not spare me poverty lest I should be ungrateful for an abundance.
Do not spare me a bad hair day lest I should miss the exhilaration of the day everything goes right. 
Do not spare me moments of despair lest I should think that hope is a constant. 
Do not spare me failure lest I should view each success as though it was never wonderful. 
Do not spare me tragedy lest I should believe that happy endings are a God-given right. 
Do not spare me any of these, lest I should coast, shielded, through life and never grow or learn a thing.

Monday, 6 January 2014

Where did that year go?


This time last year I was slightly shell-shocked, having just waved my husband off to follow the NETS van (Newborn Emergency Transport Service) to the Women's and get Jacinta settled in, then working out this whole expressing business and feeling like a fraud pretending to be a post-natal mother in order to get a free bed and cups of tea in my own special room.

I waited a couple of hours before ringing the Women's to see how Jacinta was going. I now know that instead of the nurse thinking I was silly for ringing at 1am, she would have gone straight over to Jacinta's bed on hanging up and said something like, "That was your Mum. She was just seeing how you're going. She's expressing some milk for you in the other hospital and she'll be in to see you in the morning." (I know that because that's what they did every time a baby's Mum rang whenever I was in.)

That awesome phenomenon whereby any number of years can go by yet you can still feel the exact emotions and sensations as you did during a certain key moment is certainly in play. I've spent this weekend reliving all the moments that occurred, since it was such a monumental event in so many ways. It was such a relief really at the beginning. All I wanted was to come to hospital and not be sent home. If I could deliver pretty quickly that would be good too. Done! Then it got interesting as we all know!!!

So this is where we started a year ago. At birth, there were no moments to have a little snapshot in the delivery suite or even in the special care nursery. It just wasn't the moment. The first photo of Jacinta was taken for us by the nurses at the Women's before they put all her breathing tubes on. They gave it to us when we arrived the next day.

That's just a feeding tube in her mouth and a lead for monitoring her heart rate on her chest.  There's also an intravenous line you can't see in this, through her belly button, called an umbiline. The tape is where they're about to place the big plastic tubes for the CPAP machine. (I forget what it stands for but it helped to puff out her lungs so she could get a better breath, like if there was a machine to do the first blow of a balloon to make it all easier.) The red thing is the hat that went around her head to hold it all in place. It used to get very itchy and she'd try really hard to get it off.

You can't see in that picture, but she had super long nails. The comments she got at birth were compliments about her nails and her eyelashes.
I didn't get a shot of the lashes, but.....

That was the day I had to cut them. The nurses (who aren't allowed to cut them) had been really kind about it for about a week, and it was way overdue. So sad, ruining her perfect birth manicure.

So, a couple of hospitals, a heart op, some growing.......and we're 1. Just like that!

(That'd be gluten free, dairy free cake and low GI icing.....)

We're aching to crawl, clapping, laughing, talking up a storm with some "blink and you'll miss it" words. Suddenly we're much more distracted when breastfeeding and actually chomping on food all of a sudden, which is a great step forwards, but means I'll have to be really on top of how much starch we're having and fluid intake other than breastmilk or we'll get clogged up pretty fast, I'm guessing.

Time also to get moving on more Institutes program since I sacked the physio.....

Thanks all for sharing in this first year. It's been such a big one.

Here's to more big wins in 2014!