Tuesday, 28 October 2014

Now what?

So we waited out the wait.

We had a bit of another snotty virus.

We had a death in the family and my husband had uni exams....

We had gastro.

I got around to ringing the nurse co-ordinator because I recalled that our Dr had said we could have the Hickman out the day of our appointment if the results were ok. We should just come fasting and be added to the list. The trouble here was that our appointment was at midday. I had no intention of arriving at midday with a grumpy, fasting Jacinta.

So I spoke to her and she said that it wouldn't work to just be added to the list, that the Thursday list was pretty full, but that if we didn't mind we could do it on Friday's list after we see our Dr on the Thurs. She said that the results looked fine to her, but she couldn't confirm fully that they were until the Dr did. That was enough for me to know that things were going ahead. (As it is, even if the doctor confirms something it can still go awry, we have found.)

So we went with that plan. It was a good plan. We confirmed it when we were in on Thurs. All was ok. The suggestion to remove the Hickman in Day Oncology with a bit of the hypnotic kept coming up when it was mentioned to a new person. I reiterated that it wasn't an option for us. We kept going back to the theatre list option.

Then that evening I got a call from our co-ordinator. This phone call was meant to be the one telling us to come in the next morning, fasting, to Reception J...but it wasn't.

It was telling us that there were two new diagnoses that needed bone marrow aspirates and they were the priority on the list. (Which, of course, they were.) The Friday list was looking full but the Monday list would probably be ok. The other option was they could do it in Day Oncology with some sucrose, as they sometimes do with little babies.

At this I had to ask, how painful was it, exactly?

The nurse co-ordinator said it wasn't so much painful as uncomfortable, and that it was more about keeping them still so they could hold the neck to stop the internal bleeding, than pain relief.
She said I could have a think which I wanted to do and leave her a message overnight.

I ummed and aaahed.  I really didn't want to get this wrong. I wanted to do it in theatre, but if it could be bumped to Monday, that could be bumped to Tuesday, etc, etc, and if we got a temp again we could be in hospital again for another week.

I was unsure about doing it in Day Oncology wide awake, only because I wasn't sure of how uncomfortable it was. I decided to google youtube videos of people having them removed. I found two without much trouble. What a resource the internet is!

Neither of the patients seemed too worried by the removal. No-one cried out or seemed in pain at all.
This formed my decision to do it in Day Oncology.  It seems I should not have let Jacinta watch the videos. She watched the second one and really flinched and cried when she saw them rip out the line. She didn't settle right that night and woke every hour or so.

We came in on Friday for the removal. She was fine, right up until they were about to pull it, when she let me have what for in no uncertain terms. She didn't want to do it, but we were right there and it was an exposed line into her jugular vein. So we pulled it. She was fine again, it seemed, a few minutes later. She wasn't really speaking to me for the rest of the day though.

Since then she's been flat, lethargic, spending a lot of her day either on her tummy on the floor or breastfeeding. It's a bit like she's gone straight back to just before her diagnosis. The gastro seems to be lingering.

We went to see Maria today for the first time in many months. We addressed the gut mainly to try and get her over this thing. It seemed to be both viral and bacterial so perhaps that's the problem with it taking so long.

Earlier last week my husband was asking about the bone marrow result. I had heard from the nurse co-ordinator that it all looked ok to her. This as much as confirmed for me that it was not growing back. My husband asked if this was a confirmed 'all clear'. I couldn't really say 'yes' because there never really is an 'all clear' for this. You just hope it never comes  back, and you worry less and less with each good result over time. That never means it's never coming back. It never means you can look at a bruise and feel completely certain it's nothing but a bump you didn't see happen. It never means you can see a rash or petechiae without a little voice inside your head reminding you that's what she had when she was diagnosed.

So I said it wouldn't be confirmed until the specialist said it was a good result. On Thursday the specialist said it was all good and we could get the line out. There was no big announcement,  no pause for effect. No jumping up and hugging everyone, tears of relief etc. It was just "that was all fine, so we can take the line out if you want".  And we'll see you again in a month.

He was all keen to get that confirmation so he could shout it to the world that it was all over.
Except it wasn't really all over. There was still the line to come out, or we could still be landed in hospital for a week at no notice. There was still the current sickness to get over. There will still be appointments in Day Oncology for months yet and years after that. So when the blood result was announced on his facebook page, I was right in the middle of deciding what sort of horrible day to inflict on Jacinta to get her line out, and it just didn't feel like it was the time to celebrate, to me. That's the fascinating thing about different perspectives.

The treatment has finished. The line is out.  These are my milestones. These are tangible differences to our lifestyle and to Jacinta's quality of life. The blood result, while it determines the future course, actually has less to do with life as we know it in that sense.
Unless Jacinta is the picture of health then I can't relax, regardless of what the blood tests say.
As her mother I have to observe every tiny thing. I don't have to factor them all in, but I observe them all and they all go in the mental file. Any time I see a few that belong in the 'something's wrong' pile, I'll be wondering. (And there's a facebook group for that, thank goodness!)

When does it all stop? A friend of mine says to give it 6 months....

So now we're not in hospital all the time, the job is to get Jacinta back to a state of good health, get myself back to a state of good health (I saw Maria too for my own exhaustion, the byproduct of 9 months' intense familial wrongness with no break) and start working on the things we'll need to catch up on if she's to start kinder in 2017.   No rest for the wicked!

Friday, 17 October 2014

Down syndrome: A father's perspective.


Tonight I received this surprise email from my husband 
and I thought I'd share his viewpoint with you. 
It is October, after all!

It seems only fitting that the first guest post on this blog should be from Jacinta's Dad....



I am a father under siege – but in a good way. I was born the eldest of three brothers and grew up in a home of transformers, martial arts, cricket and army men. For the past six years Barbie dolls, ballet dresses and My Little Ponies have surrounded me. 

I have three beautiful daughters and the best wife a husband could ask for. So I guess having a son who would want to learn to kick a football, and follow in my footsteps is something I will just have to forget. But, you know what, I wouldn’t have it any other way. There is such a special bond between a father and his daughters. The affection and love we have for each other is certainly something I didn’t expect before my children came along. 

My three most vivid memories, and most emotional, are the days my daughters were born and joined our family. I’m usually not a teary person, but with the birth of each daughter I have blubbered like a child. The love I immediately felt for each daughter was literally timeless. It was like she had always been a part of the family and I couldn’t conceive of a time when she wasn’t a part of my life. Very difficult to explain to someone who hasn’t experienced it, as it isn’t like anything else.

Holding my first two daughters, I knew each time that I would love them forever, regardless of what situations they got themselves into or the scrapes and falls they would experience in life. I have such high hopes for my daughters. They are amazing people, each of them and I know they have the potential to achieve any goals they have.

Almost two years ago Peggy gave birth to our third daughter, Jacinta. I was so excited prior to the birth, I couldn’t wait to welcome another person to our lives and to experience that love for another being. 

A few weeks before the birth there were a few indications that something was wrong. We had declined genetic testing, mainly because it would not have had any impact on our decisions, we were always going to have Jacinta regardless of the situation. So I decided I wouldn’t worry about things that were out of my control and just focused on the excitement of another daughter. 

The day she was born was probably one of the toughest days of my life. The birth was very quick, we made it to the hospital just in time. In previous deliveries I didn’t watch the actual birth as I found that all made me a little queasy. However, this time I was fine and I watched as Jacinta was born. 

I saw it immediately … the joy and excitement were gone and my stomach felt like it had just fallen through the floor. It was clear to me that she had Down syndrome. The doctor, who obviously saw it as well, was very non-committal and uncomfortable talking about it, saying we had to wait for tests. I didn’t have to wait for tests, I knew! All of the hopes and dreams that I had for her were dashed in that instant and at that moment a vision of her life flashed before me and it was not promising. 

My only experience with down syndrome had been my auntie. She has what I would class as the ‘classic’ features and characteristics of down syndrome. Not a future I wished for my daughter.
However, I quickly got my shit together, two of the most important women in my life (Peggy and Jacinta) needed me to be strong and I immediately went into action. We were advised by the senior doctor that she had a myriad of medical conditions, including kidney, liver, heart and blood problems – and oh yes, most likely Down syndrome. I rang our friend Kristen Morrison, whose son Gryffin was also born with Down syndrome. She had spent five years searching the world for a solution to her son’s situation and she had found a number of solutions to overcome a number of the conditions associated with Down syndrome. She told me what I could do immediately and so I started to get it done.

The second hardest moment was telling my parents. It had been two days and I hadn’t really told them what was going on, just that she was in the special care nursery getting help with her breathing. It was that night at my Mother’s birthday that I told them. It was a tough reaction. Mum burst into tears and I think Dad was in shock. Like me, their main experience with Down syndrome was my Mum’s sister. I left that evening with the mood dark.

Two days later at my request, they met with Gryffin’s Grandmother, Glenys, who is a friend of both our families. She was able to share with my parents the love and hope she has for Gryffin and gave a truly positive spin on the situation. When I next saw my parents it was a different story. They were totally on board and ready to do anything they could to ensure Jacinta had every opportunity to achieve her goals in life.

It has been almost two years and a lot has happened in between, including major heart surgery and eight months of chemotherapy for leukaemia. It has been tough and Jacinta and Peggy have spent at least nine of the past 18 months in hospital. There have been days where I have sent our eldest daughter to school in mismatching socks and totally disheveled hair. 

So, almost two years on, what do I think? Would I have done things differently? Should I have insisted on genetic testing? Is my life better or worse?

There are times where it has been tough. I have tried to hold myself strong for the sake of my wife, daughters, friends and extended family. There are times where I wish I could just let it all go and let the emotion wash through me. But there is no time for that and as a father people are counting on you to be a rock and support the family. Of course Peggy is aware of how I feel, and some of my friends have heard bits of it, but I have never really sat down with someone and just poured it all out, and perhaps I will one day. So yes, at times it can be quite difficult. There are days where I watch Jacinta and see the signs of Down syndrome on her and it really pisses me off. Not for me, but for Jacinta. But these moments are few.

But I love Jacinta just as much as my other daughters. It is the same timeless love where I can’t really remember a time without her in our lives. I wouldn’t even want to conceive of not having her. She is such an amazing girl. Despite all that she has been through she has remained optimistic, positive and gives me daddy kisses and cuddles which are very cute.

But I do wish she didn’t have Down syndrome. To me Down syndrome is just like any other physical problem. It means that Jacinta is prone to other medical conditions and illnesses. It means she has to work a hell of a lot harder than anyone else to achieve the same development. I don’t believe in any way that the extra chromosome has any bearing on her personality. I strongly believe that who Jacinta is, is not in any way a byproduct of the Down syndrome. I have seen some families asked, “If you could cure your child of down syndrome would you do it?”, and many say ‘no’, reflecting that their child would not be the same loving daughter/son that they have. Without meaning offence to anyone, I vehemently disagree with this viewpoint. If someone came up with a cure for Down syndrome I would ensure Jacinta received it immediately. In the same way a broken leg does not dictate who a person is, neither does down syndrome. But just like a broken leg, it sure can make life more difficult. 

Now that Jacinta is born and a part of our lives, in retrospect would I have got genetic screening? No, not in an instant! She is my daughter, and despite the difficult times I love her and could not conceive of life without her. I have read stories of families who were pressured by doctors and families into getting an abortion and my heart breaks for those families as I know the guilt and regret they will feel for the rest of their lives.

We have had such incredible support. My parents have been complete stalwart troopers and have gone well above and beyond the call of duty. Do they treat Jacinta any differently from my other two daughters? No, not at all. I have been so blessed to have some of the best parents. This situation has only brought our family closer together. I will be grateful to my parents forever for their support during this time.

I think it is sometimes more difficult for friends than it is for us. There are times when I have been out with friends and I can sense they don’t know what to say and so end up avoiding the subject of Jacinta. This I completely understand. It can be tough. But I know my friends and I know they care. And even when they don’t say anything to me for fear of opening up a difficult conversation, the knowledge that they care has supported me greatly. If you are a friend in a situation like this, don’t underestimate the effect of just caring, you may not realise that what might seem like nothing can make all the difference. I am extremely grateful for my brilliant friends.

They say that adversity is the true revealer of character.  My wife is character all the way. I know it has been very tough at times, but she is the strongest person I know. She is such a fantastic mother to all our children and loves them all incredibly. I cannot praise her enough for what she has done. 

So, overall, despite the difficult times and challenges to overcome, life with Jacinta trumps life without Jacinta any day of the week. I love all of my daughters and wouldn’t trade them for anything. With major advances in neuro-plasticity I know that Jacinta can overcome the conditions brought about by Down syndrome and reach towards her own goals in life. I am optimistic about the future and don’t regret a day of it. Of course I wish Jacinta didn’t have Down syndrome, but it’s life and its full of all sorts of trials and tribulations. But it is our life and I am glad to have such an amazing family.

Wednesday, 15 October 2014

What to do if you have received a Trisomy 21 diagnosis...

If someone I know had received a Trisomy 21 diagnosis and wanted to know what to do, here's what I'd tell them, regardless of whether the diagnosis is pre-natal or ante-natal.

1. Google these words: "I regret keeping my baby with Down syndrome".
(You'll notice that the best Gooooooooogle can do is give you the regrets of people who didn't keep their baby with Trisomy 21. **)

2. Visit
http://www.dsdiagnosisnetwork.org
Explore the page and have a look at the book we made! You can get the section which relates to your diagnosis situation, i.e. Birth Diagnosis, Prenatal Diagnosis etc. or the whole thing if you like.

3. If on Facebook, search for Down Syndrome and Trisomy 21 (probably separately). There are heaps of groups there and you can ask to join any of the closed ones. Send a message introducing yourself. Some will be region-specific but the moderators can point you in the direction of the right ones if it's the wrong region.

4. Read "Naturally Better", by Kristen Morrison, or if you don't have time to read it all go to
http://naturallybetterkids.com and have a look around. (I read this book before I had any need to and I found it was the basis for my resolute acceptance of Jacinta's diagnosis.)

5. Arrange to meet some people with Trisomy 21 and arrange to meet some parents of people with Trisomy 21. Bear in mind that the older the person you meet, the less likely it is that they will have had the opportunity to access early intervention and the more likely it is that they will have suffered from the long-term developmental effect of society's low expectations of them.
If you can't arrange this through your social worker or genetic counsellor, call your local Down syndrome organisation. There are statewide ones and now a national one in Australia. Here's the link to the organisations worldwide:
http://www.ds-int.org/down-syndrome-your-country
They will be able to point you in the right direction.
Also, feel free to contact me via the comments to ask questions etc.

6. Search for a Down syndrome blog that resonates with you. Some of my favourites (from people I haven't met) are:
Noah's Dad noahsdad.com
Kimchi Latkes http://kimchilatkes.com
Down Syndrome Up Up And Away http://downsyndromeupupupandaway.blogspot.com.au

7. Have a look at the Australian Government's Raising Children website.
http://raisingchildren.net.au/articles/down_syndrome.html

8. DO NOT RANDOMLY GOOGLE DOWN SYNDROME OR TRISOMY 21 IF YOU WANT TO READ ANYTHING BALANCED.

So it may seem that, in looking at all these links, it's all a bit one-sided. It may seem that the bad news is glossed over and everyone's raving maniacally about how good it is, while secretly, at home, we're sitting at home in a dark corner rocking back and forth with our hands over our ears, wishing it was all over.

The thing to remember is who the bad news comes from:
It's the media,
It's the doctor who tells patients an increasing number of times per year,
It's the person on the forum who knows all about it because they terminated their pregnancy,
It's the person in your family who wants the best for you and doesn't want you to have pain or suffering,
It's your friend who also doesn't want you to suffer and maybe also doesn't want to have their 'perfect' reality encroached upon by someone 'imperfect' whenever you catch up from now on.

The thing to remember is that all these people get their information from theoretical sources, which can describe clinical features, but not experience. Another thing to remember is that doctors feel bound to give you the worst case scenario (except when telling you the side effects of medications, oddly), and will be sure to warn you of the dangers of any course of action to cover their legal backsides.

 The thing to remember is that the truth will come from those who have lived it. The newspaper reporter, the doctor, the mum on the forum, the well-meaning friend or relative, unless they have a child with Trisomy 21, don't actually have the information necessary to inform you fully about what life may entail.

It's like the study done a while back (may have been by a dodgy current affairs program) which found that it wasn't a good financial decision to have children because they cost more money than they make. Ummmm….yep. Kind of missed the point there.

So make yourself fully informed, and remember, if special parents get special kids, those parents are made, not born. Having children is daunting, regardless of their individual needs. Special needs might raise the bar, but like not wanting children too early then wondering why on earth you thought what you were doing was so important it meant children should wait, it seems that parents of children with Down syndrome/Trisomy 21 have just jumped in with both feet and found it's fine, once you're in.

And, to be clear, I am not impartial. It absolutely breaks my heart to hear mothers' stories of termination.  However I am not looking to collect friends who have children with any of Jacinta's diagnoses. I just know I'd rather the friends with the pain of heart surgery or chemo that than friends with the pain of irreplaceable loss, and guilt, which is where the bad news advice seems to lead.

So if you have had a diagnosis of Trisomy 21, in-utero or out-utero, I wish you happiness, I wish you wisdom and I wish you well.

(And if you want to contact me directly, if this blog isn't warts 'n' all enough for you, feel free to comment below.)

(Ooh, and anyone who can think of any step I've forgotten, leave it in the comments too!)

** Since writing this article, a newspaper article has been published in the UK, which incidentally vioates the UN Convention on Rights of persons with disabilities.  http://www.un.org/disabilities/convention/conventionfull.shtml
It highlights the story of one mother who, unlike pretty much the rest of the parents of children with Trisomy 21, wasn't up to the challenge and has publicly stated that she wishes she'd aborted her 47yo son. I sincerely hope he doesn't read the paper, or know anyone who reads the paper. Fingers X on that one...

Monday, 6 October 2014

Down syndrome Awareness Month

So it's October again - how did that happen??

Around the world in October it's Down syndrome awareness month. This means that in Japan, The Netherlands and The Carribbean, people are blogging away about Down syndrome.

Why, indeed?

Because each one of these people, namely parents of children with Down syndrome, feels that they were lied to. They need to let all the other potential parents of children with Down syndrome out there know that the lies are false.

No-one wants to judge, or no-one that I've seen. And certainly no-one would ever feel anything but sadness and love for a mother who has been convinced that aborting her foetus who has Down syndrome is the better option, and this purely because we know what they're missing, and I suspect they do too.

We talk of rainbows and unicorns. This is what we call it when we go on and on about how amazing our child with 'Down syndrome' is, or how much better life is since our child with Trisomy 21 came along. It must seem to everyone else that their otherwise normal and sensible friend/family member has turned delusional and feels it necessary to lie to everyone, painting the world rose-coloured.

I guess it's like the thing that happens to the first couple in a group of friends to have children. Suddenly they don't come out anymore, they don't sleep in anymore, they let themselves go, they don't do anything 'fun' anymore. They stop swearing and getting drunk and going to clubs, and they spend their whole day surrounded by urine, faeces and vomit, yet they tell you it's amazing and wonderful and you should definitely have kids.

You think they're a little bit sleep-deprived and it'll wear off.

It never wears off.

It's a change in viewpoint. It's a new way of life. It's living for others instead of yourselves and it expands your entire life, almost adding a fifth dimension.

The same thing happens with a child with Trisomy 21.  It may also happen with other special needs categories, but I have no experience with those, although I do have to say that the parents I know who have dealt with special needs are some of the most grounded and understanding people I know, with the odd exception.

There are aspects to special needs, and this includes terminally ill children too, that make you push even more aside. You let go of any shred of insecurity, you let go of any self-doubt and you pull together tighter with your nearest and dearest and make every second count. You also realise the value of a casserole arriving, or a childminding or playdate offer, or a hospital visit. You make time to do these things for others and to help wherever you can with others' difficulties since you realise how much you are needed and how much you can actually offer in terms of real, tangible help.

And if you ever had any qualms about walking around your child's ward in your pyjamas, unshowered, looking like you've been hit by a truck, you don't anymore. You get real. Super real. You don't apologise anymore for things that don't matter, like walking around in your child's ward in your pyjamas, unshowered, looking like you've been hit by a truck.

So not only as parents do you get to experience a whole hidden level in the game, as a special needs parent you also find out the cheats, that the things the medical people might tell you when they're pushing you to terminate are actually untrue. They might have been true 50 years ago, but that was when smallpox and polio were still around and microsurgery didn't exist. IVF didn't exist. Organ transplants were unheard of. This was a completely different time.

Now we have resources and we have precedents.
Finishing High School? Done.
Voted Homecoming King and Queen? Done.
Finishing University? Done.
Running a successful business? Done.
Swimming the English Channel? Done.
Starting your own foundation and touring as a guest speaker? Done.
Getting your Driver's License? Done.
Getting married? Done.
Living Independently? Done.
Having a family? Done.
Being Lord Mayor? Done.
Star in your own television series? Done.
Being a super buff male model? Done.

This is not an exhaustive list (there are several successful actors out there who don't have their own series, for instance, and I haven't included the links because I'm tired and they're mostly in my last October post of links.  These things have not all been achieved by one person, but some have been achieved by some people and some by others. I have achieved about 6 things on this list. I know adults in my life who have achieved 2 or 3 or more. I'll never be a super-buff male model, more's the pity. I also fear I'll never swim the English Channel.

It is true that to achieve these things, your child will probably have to work harder than his or her siblings would to achieve the same. Maybe in the early days, establishing brain connections or maybe in later schooling or adulthood. Maybe all through his or her life, he'll be working hard. Who said that was such a bad thing? My husband's Nana always said that her daughter with Down syndrome was never any trouble and she loved having her around, when people implied that she was somehow a drain on her energies. Watching the ABC series, The Dreamhouse, recently it was clear also that the mothers of the two adults with Trisomy 21 who lived in the house were very happy to have their children at home, but realised that it was limiting them by keeping them there.

My father was a train driver. He never had a tertiary qualification. Spending his day in a room didn't appeal to him (to the eternal chagrin of his father, who had landed him an excellent job as a clerk, so he didn't have to work in the railways…..) and tertiary education certainly wasn't necessary in the '50s. I might never have finished university had I not decided to go back in my late 20s, and my husband is now nearly finished his first proper tertiary qualification at 35. I have friends who, at nearly 40, are yet unmarried. I have friends who are childless at the same age. My own (university educated) mother didn't drive for most of my life, after losing her confidence at the wheel before I was born. However, she did enjoy bushwalking, despite having one leg about half a foot shorter than the other. And she got back behind the wheel again after my father died, rather than relinquish her independence. Most people I know have never run a business. I was never voted anything remotely good at the end of High School, nor was anyone I know. Most people I know finished High School, but not all. In fact, some of the cleverest people I know did not finish high school at all.

It may seem, to those who follow the prescribed route, that most people go to school, go to university, get a job in their chosen field, move out of home, get married, have a family and work til retirement. I used to think that this was what everyone did! It so isn't. Actually only a small percentage of humanity does this. Having realised this, I don't expect any of my children to do this. I hope for their sake that they're happy and contributing to society. My parents used to say that they didn't care what we did in life so long as we were happy, and we weren't doing anything illegal. I think that's fair.
So why would we be so incredibly worried about someone who may or may not tick all the boxes on the above list?

If we put this in perspective, we're not talking about people who can't express their wants, likes and dislikes. We're not talking about people who can't participate in a discussion about whatever's going on in the news or the football or on X-Factor. We're not talking about people who can't hold down a job or boil a kettle or cook a meal or keep a house or catch the train. We're not talking about people who need a person with them 24/7 for their own safety, nourishment and hygiene.

We're talking about people who have dreams and goals and who have a very real chance of achieving them, especially if their parents are willing to put in the effort to help them grow when they need it. Would you wish away your child with a speech impediment? Would you wish away your child with dyslexia?

Would you wish away your child who develops a drug addiction? Would you wish away your child who takes up smoking and drinking for a living by 20? These are self-inflicted and I'll wager your average adult with Trisomy 21 could best in an IQ test, a job interview and a soccer match either of these types.

Having lived through a child with cancer, having lived through a child with heart issues, it was hard on us at times, but it hasn't killed us. We are here, we are fine. Jacinta is more than fine. She's brilliant. Just this week she's been trying to crawl and standing up and taking steps with help. She's certainly not moping around about the cancer or the heart stuff. She's getting in there and doing it. Our family is very appreciative of the times we're together. Sure, our last hospital stay resulted in my daughter losing her sneakers because I wasn't there to monitor them and we had a drama re school shoes on the first day of term, but if that's the worst problem you've ever had, you need some bigger ones.

I was just now reading a discussion board on Babycenter with parents whose foetuses had diagnoses of severe heart defects. Now Jacinta had severe heart defects, but not anything that would mean needing a transplant or anything like that. Still, these parents were facing the possibility of needing one or more heart surgeries and the possibility that their child might die as a result of these physical illnesses. I read on as the person who started the thread posted that she had decided to terminate because she felt that the above scenario would destroy her family.

We've done all that. We've had the surgery for the heart and surgery for the leukaemia and await still more surgery for the heart. It's not a fun thing to look forward to and it wasn't a fun thing to experience. It really wasn't fun to be sitting there long after all the other parents had gone to see their children post-surgery when theirs had been done in the afternoon and mine had been in since 8am, wondering if something had suddenly gone wrong and I'd have the solemn-looking surgeon come out and sit me down to tell me the worst possible news.

But I'd never for a second consider giving up Jacinta to give that up. I'd definitely accept the magic side-effect-free pill that removes the extra chromosome and gives her a body she can easily use, because no-one really wants to have to work harder. We all like to be given an option. But I know, as all grounded people know, that adversity builds character. Lessons learned early make for an easier ride later. And although I'm a firm believer that you create your own success or failure, still, you get what you get. You start with a hand and you play that hand. And I know that your win is so much the sweeter when you start with a crap hand.

My heart breaks for the mothers on that thread who terminated and then felt the backlash of loss and guilt, like the mother who originally posed the question. My heart breaks for the mothers all over the internet who were pressured by their medical providers and even their partners to terminate and did, and regret their decision every day of their lives. I mentioned previously that I googled for interest's sake 'I regret keeping my baby with Down syndrome'. I searched through pages and pages of results. The only regretful posts were from mothers who had terminated.

Rainbows and unicorns. They could have had rainbows and unicorns. And they know it.

Saturday, 4 October 2014

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!!!




Weeks 20-23... Diary Luke Aemia

So, yes, nearly finished How I Met Your Mother…..

We were finished the chemo element of round 5 and were visiting Day Oncology every few days to have bloods checked and adjusted accordingly.

We had a haemoglobin transfusion one day and a platelets transfusion the next time.
The neutrophil counts were always over 1.0 and being several days between tests, we never knew whether or not they dropped.

At home we had a ridiculous few weeks. I had finally got on top of my sinus infection. We had my eldest in emergency with febrile convulsions after the school disco. Then we had my middlest in emergency with concussion after catapulting off the bed and hitting her head on the floor.

Two days later my middlest came down with Slap Cheek syndrome and my eldest succumbed five days later. Three days after that, first thing Monday morning, Jacinta spiked a temp.

This is classic, textbook behaviour for a chemo patient at home between cycles. You're expected to arrive in the middle of each month with a temp for a short stay or to wait it out til the next round. We've managed to avoid it every time we were home until round 5.

So we arrived in Emergency. They started the process of antibiotics. This is meant to last for 48 hours or until blood cultures come back and neutrophils are up. They took a nasal swab to see if there was a virus. They assumed we had slap cheek and sent us up to another ward, the neurology ward, because slap cheek can make a person's neutrophils drop quite dramatically.

So we found to our delight that on this other ward, we could come and go as we pleased, to any part of the hospital, even though Jacinta was attached to a pump. I could wheel her pole downstairs to the shops or to look at the fishies. Later in the day we found out that her neutrophils had dropped quite dramatically since the last test and she was now at .2. This meant we were neutropaenic and though nobody on that ward was standing over us, we knew we shouldn't really go anywhere much.

The next day the oncology doctors visited us and said that she had not one, but two viruses. RSV (a nasty cold which can easily become sinusitis or bronchiolitis) and another one which is a common cold one but not one of the most common common cold ones. They said that RSV usually gets bad around day 4-5 and stays bad for about 5 days or so. "So she'll get worse before she gets better", said one doctor. "No she won't", I replied, in my classic insouciant fashion (mostly because I didn't think it was necessarily 100% given that she would, and if anyone was not going to it would be Jacinta, and that it was much more likely to happen if we stood around talking like it was a foregone conclusion). This Dr knows Jacinta and her super neutrophils that don't go down, so he clearly felt no need to argue the point.

The next couple of days we were kind of in a holding pattern. Her sats started doing this curious thing where they'd be fine for a minute then dip down to the low 80s for a minute or two then recover again for 10 minutes or so then dip down again. All (insert mild expletive) day.  By the Wednesday I think we were on wafting oxygen (where the oxygen flows through the mask which you hold near their face or in the general vicinity of their nose) at night and most of the day.  I was spending a lot of the evening repositioning it as she cleverly outmanoeuvred the mask in her sleep.  This is kind of where the bond between the ward and me started to break down.

When you're on a particular ward, you'll be managed by those nurses according to the parameters of the patients they usually see. Most wards in the hospital see patients for about 7 days or less. The parents have probably never been in hospital with their sick child before and have only just remembered the way out of the ward, let alone worked out how the sats monitor works or how to best position the probe on which part of their child's body for the best read at night (lengthwise along the big toe) as opposed to during the day (wrapped around the thinnest part of the foot), or what their usual body temp is (35.8), or how to take their temp without waking them (by ear), for example. (I could go on, oh how could I go on, but that's not the point.....)

So there are some differences in the nursing between your Oncology ward, your Intensive Care ward, your Cardiology ward and your Neurology ward. (I specify these only since they're the ones we've been in.)  Your Intensive Care ward is a place you could be for any length of time. It's a place children don't ever go home from, but they do everything they possibly can to get the children out of there to the ward on their way home for good.  You have one nurse for you and maybe another room. You can see them all the time. If you have a question you have only to wait a few minutes and they'll be looking in on you again. There are no MET calls (the emergency calls) in Intensive Care. MET calls get you to Intensive Care some of the time, there's nowhere to go from there.

The nurses will sit and chat with you about life, the universe and everything. They'll answer every question you have in full and with detail. They'll include you as much as possible in your child's care and listen very carefully to what you have to say. They focus very much on the family of the child in their care. Often they don't actually meet the child for more than a few minutes since the child will be in and out in a couple of days and barely conscious most of that time. The doctor comes around twice a day without much fanfare and says a few things and is on his way - unless you're just post-op then the team will come around to have a look.

Your Cardiology ward has a lot of children who are post-op. The Children's is one of the top paediatric cardiology hospitals in the world so they do a lot of hearts. I assume this has a lot to do with how things run. The morning rounds happen every day about 9am or so. It's standing room only. The head person, either the surgeon who did the surgery or the highest ranking ward doctor will put the patient's chart on the wheelie table at the end of the bed and speak to the crowd a little like a priest giving a sermon. The head nurse, the patient's nurse, the junior doctor, fellow and any allied health peeps there too will join in the discussion. You don't want to miss this because they don't wait for you. It happens whether you're there or not. If you are there the doctor will ask you how your child is going and then speak to the room with the day's plan for your child.

The nurses will run the day according to this. This isn't any different to how any ward runs, I'm sure, but in Cardiology it's done exactly according to what happened at that meeting and to change that takes a lot of convincing. (Except for that time they didn't cease the medication that the doctor told them to cease..... and I so should have said something. Learned from that one - I ALWAYS say something now!)  It's like diverting a steam train to another track off-schedule if you want to do something differently from how it's usually done. I think they have one way of recovering children from heart surgery and they do it that way. Makes sense. They also have certain set parameters outside of which they have to call a MET call - I guess since hearts are pretty important. You don't want it to suddenly stop working.  There's a certain tension in the air in wards where they do call MET calls. The parents do get to know each other a bit through the Heartkids morning teas so it's a bit more social than some other wards.

Oncology is like a cruise ship. The patients there are as likely to be in for weeks or months as for a few days. The parents meet in the little kitchen and sometimes sit in there for a few hours chatting. The kitchen is always well stocked because our lovely fairy makes sure it is. We not only have tea, but several kinds of herbal tea on top of Earl Grey and the usual. There is a secret cupboard of emergency food, supplied by one grateful family. There is bread most days from a very kind bakery and fruit most days from a very kind other person. There are condiments in the parents' fridge, which is in the ward kitchen, and there are biscuits for your tea and lollipops for those who feel the need. The public holidays and festivals are celebrated with flashing necklaces and sparkly headbands. If there's a reason for cake, there's cake. There are a couple of charities who put on morning tea once a month. There's a fully catered dinner for the parents once a month. There's a hairdresser once a month. There's a team who do nails and massages once a month. There's ice-cream once a month. There's a weekly walking group. There's a puppet who comes around. There are celebrities who come around, some with cameras, some not. On the school holidays there are polka dot girls who bring fun stuff to the rooms.

Then there's the actual medical staff! On the Oncology ward almost every patient's treatment protocol is different. Even when the cancer and chemo/radiation/transplant is the same, the patients respond so differently, it's rare that two patients will require the exact same care. Your child is treated as unique and you are a very valuable source of information. The nurses refer to you a lot in making decisions and no changes are made, nor procedures done, nor medications administered without your say so. When your child is home they are still a patient and you are their nurse so you are treated as part of their medical team. The doctors do come around, but not at particular times. If they miss you they'll come back if there is anything important to say or any big changes to be made. There is no big group session, it'll just be the Consultant if they're there, the Fellow and the junior Dr. There's kind of an etiquette on who says what. The Consultant runs the conversation and refers to the Fellow for recent specifics and discussion on the daily progress and plan. The junior doctor says nothing and writes everything down. You get to talk to the junior doctor throughout the day if something happens or when they call past later to look in on you.  You'll see a doctor several times a day if things are gong on. If you're just waiting around to avoid getting sick, you'll see someone about once a day and people will mostly leave you alone.

Your Neurology ward is a little like the Cardiology ward in that their patients are mostly short stay. The kitchen is not very well stocked - tea and coffee, maybe sugar. Milk if they remembered. That kind of thing. Heaven help you if you can't make it out of the ward!  They do call MET calls more often, but their patients are much more varied, which I think makes their nursing a bit more flexible.  The first time we were admitted to this ward we were kind of under Cardiology but taken care of by the Neurology Drs since it was really just dehydration that was the problem. This admission we were mostly under Oncology and we saw our own Drs every day and some days twice a day. The nurses were interesting. They didn't know us from Adam - except he's a boy and we're both girls.

The nurses had no idea how often she'd been on wafting oxygen nor what it meant to Jacinta and her overall state of being to be on nasal prongs for oxygen. I resist and resist and resist oxygen directly delivered nasally for as long as physically possible simply because it causes so much stress it's likely to make her worse and lengthen her stay. She and I have a system and I honestly don't mind sitting there all day holding the mask within breathing distance of her face if it's a choice between that and the prongs. Then we got this one nurse on our second night. I met her as I came back upstairs about 10pm. She was holding a screaming Jacinta, who had been sound asleep when I left her to go downstairs for the first time that day. I put out my arms to take her and this nurse just held onto her. "I'll take her", I said. "Oh, OK", replied the nurse, looking either puzzled or put out, I'm not sure.

I asked about how she woke and the nurse said vaguely that she had her legs all sticking out of the cot. This told me how she woke. This nurse moved her, thinking she must be uncomfortable and stuck, and woke her in the process. I've had this before. It's always the one who doesn't like the look of the sleeping with limbs sticking out who wakes her up. (Never mind that she does it all the time and manages to get herself back in without any assistance and without waking up.)  So I was already grumpy. Not only did she get woken, but she got woken to find I wasn't there and she was alone with an unfamiliar nurse. Not cool.

This nurse was just a little bit over the top. The kind who hovered when I gave Jacinta her meds, trying to control exactly how I did it, physically, by reaching in and doing things with her mouth or trying to grab her hands. It was really intrusive, like she couldn't give up control. Then there started the saga of the sleeping. The hospital has started trying to enforce a policy regarding sleeping arrangements. Now obviously a patient who is needing oxygen etc or constant monitoring needs to be where they can be seen and reached and within a certain distance of the wall where the oxygen tap is. There have been one or two fatalities at a nearby maternity hospital involving very young babies sleeping with their mothers and dying overnight. I don't know the details and I can't find them anywhere. It's a bit urban legend, but that's the reason cited.  Anyway, they are worried about babies and small children sleeping with their mothers from a SIDS perspective and they want to discourage it.

So whenever Jacinta is having a lot of trouble staying asleep, I give up by 2 or 3am and bring her over to my bed for a feed. Since the hormones involved usually put me to sleep at that time of night I find it safer if we're both lying down with her nearest to the wall so she doesn't fall. This means we both get rest. She gets better faster and I don't fall asleep on the job. Anway, after having woken her a second time and me eventually taking her to my bed this nurse came to do obs about 4am and we were asleep on my bed. She said I had to bring her back to the cot and that I wasn't allowed to sleep with her on my bed. After she'd done what she needed to I tried getting Jacinta back to sleep by rocking etc and I tried and I tried and I tried. We stayed up til morning, not sleeping.  I wondered if the nurse would see the hole in her logic. After about 3 hours' sleep that night, on top of about 3 hours' the night before I spent the day struggling with somnolence, stopping myself dozing off and letting her roll off my lap during feeds.

The next night I got Jacinta to sleep. I had to go out so my husband stayed with her while I was gone. The same thing happened. The nurse woke her twice and my husband also intervened twice to stop her waking her. This was in the two hours between her shift starting and my arrival back at the hospital.
I must have managed to get her sleeping in the cot that night because I was woken about 7am by Jacinta screaming. It wasn't her usual, "I'm awake!", cry that she'll do if I'm not waking up quickly enough.  It was a real upset and angry scream. I heard the nurse comforting her and I heard a bandaid being opened. I was out of bed in a flash. This nurse had woken Jacinta by doing a finger prick blood test without me there and without any warning. I was completely livid. I told her point blank that we never do a finger prick without warning and never ever without me there. The nurse was suddenly all apologetic as though she had no idea that she had been doing something wrong and was completely mortified. I really don't know how she could have thought it was ok.

So that was the end of Jacinta feeling comfortable with me not being there. We were back to me not being allowed out of her sight, coupled with her being super jumpy while asleep and waking at the slightest change in position, making it very tricky to put her down! We made sure we never had that nurse again.

I also had the opportunity to talk with the next night nurse about what the policy on "co-sleeping" actually is and why it was a dangerous thing to enforce as a blanket rule (i.e. incurred brain injury from falling onto the hard floor because sleep-deprived mother is not allowed to feed lying down with baby placed securely to avoid falls). She very sensibly stated that they can't tell us what to do since we're the parents, but that they strongly discouraged co-sleeping. She also stated that the nurses are meant to have the chat with us and then leave us alone once we've talked about it. This was a relief to hear things weren't completely insane on that point. (And I should make clear, I don't have my children in bed with me for preference. I prefer to sleep alone. I only have them in bed if it means more sleep for everyone than if we didn't do it that way or a safer feeding environment when super-tired.)

At the end of a week there was room for us on the Oncology ward and we couldn't get there fast enough! It was so good to be home. Well, you know.

Another week in isolation, but on our own ward. A man with a camera came past asking if I barracked for Carlton because there were players coming around. I go for Collingwood. I told him he was wasting his time…. (Overseas readers google AFL, Collingwood, Carlton.)

There were some interesting moments of us sleeping on blankets on the floor since she wouldn't settle and couldn't come to my bed. One of my favourite nurses helped me move the parent bed to the middle of the room so she could be on oxygen and we could sleep properly.

By the end of the admission, we were so over it, she threw my phone over the side of the cot to its death. It was time to go.

Just about to lose the nasal prongs and go home!

Oh, and I did finish How I Met Your Mother. Legen .....(wait for it....)....dary.








Friday, 26 September 2014

Ummm....yes....the diary.....

OK, slap on the hand for me.
I've completely dropped the diary. Mostly due to a lack of sleep and on again, off again hospital admissions and life just getting completely crazy.

And the funniest bit of that paragraph above is that I wrote it over a month ago!

The thing with life is that once you're allowed off the benches you get in there and play, and there's no time to stop and write about it!

So I'll have to catch up on the last loooong diary entry for the chemo some time soon. It includes some juicy moments on other wards and some riveting hospital politics. It even has me getting angry with a nurse. (Yes, really. Me.)

And the question then is….where are we up to?

Well…kind of in limbo.

We're in hospital right now, with what should have been a straightforward viral temp but suddenly we had a positive blood culture and now it's complicated. It's not a biggie though - although I am kind of still up waiting for the nurse to attach the sats probe because I have a feeling that when she attaches it the sats will be low and she'll want to start oxygen….and we've had fluid overload today….and I think we're likely to have it again….which is a very likely cause of low sats….and we DO NOT LIKE OXYGEN PRONGS and will avoid them at all costs. So I'm waiting up for now. Just in case….

We have a thing called 'para influenza'. We call it 'para-flu'. It sounds like a cool flu in camouflage gear that gives you croup. (Except for us, no croup here.) It's not actually influenza. It's just pretending.

And where are we on the leukaemia thing….and the heart thing? ("The heart thing?", I hear you ask. Yes, the heart thing.)  We're finished all our chemo, with inconclusive bone marrow results, which our big head honcho doctor thinks are absolutely fine 'because why wouldn't they be?', since they always are. Explanation in the big diary blog. The heart function has been getting funkier and funkier over the course of this year. We'll need to address that. Explanation in the big diary blog.

It's nearly October, which is Down syndrome awareness month. And we all know how I feel about awareness months……

A couple of things have become fairly clear over the last 9 months. I call these the Rules of Oncology.

If you assume things will go one way, they will almost certainly go the other.
If you plan for something it will almost certainly not happen, or if it does, not the way you planned it.
If you fail to arrive for a simple appointment fully packed with supplies to stay for a week, you'll be admitted indefinitely.
Jacinta is awesome and everyone loves her.
Night nurses are not to be trusted…. (OK, maybe that's not always 100% the case, but still…..)

And Jacinta is pulling herself up to stand lots, taking a few steps towards me within the safety of my grasp, eating everything under the sun, with a spoon or fork if I let her, feeding me food that she has NOT chewed (after I started refusing the chewed things), has a mouthful of teeth and a new head full of hair, is saying lots of things (with varying levels of clarity), blowing raspberries on MY tummy,  and generally being very clever.








Wednesday, 6 August 2014

How I feel about Gammy...

So this week, all around the world, the news of baby Gammy has been spreading.

The news was all over my facebook newsfeed a week or so ago, spread by other mothers of children with Down syndrome. Then the mainstream media found people were interested and started flogging this story to death.

In the beginning this was a heartbreaking story of twins separated, a sick baby needing a heart operation which his mother couldn't afford. A baby abandoned by his biological parents and a surrogate swindled out of money she was entitled to and lumbered with a baby who, thankfully, she loved and wanted to care for.

The outrage at the one twin being taken and the other being left was loud and vocal. Common, everyday people shouted, "that's not right!".  I had to wonder at this and whether any of these had ever had genetic testing to see if their baby had Trisomy 21 and would have considered aborting it. I wondered if it even registered that there was a similarity between the two scenarios.

Some parents were surprised at how the terminology in the media was quite out of date in terms of people-first language. They cheered online when they saw it being fixed up. There were also reports of Gammy being said to "suffer" from Down syndrome. This is another thing you just don't want to say. Parents got all vocal about stopping such practices. I think people's actions are more important than their words in these cases.

Then we found out things about the still anonymous biological parents. Then we found out who they were and they started saying nasty things about the surrogate and claiming they did the right thing and wanted to take Gammy home but that the surrogate had parental rights.

So now it's all a big gossip about who's telling the truth and where the babies are going to end up.
I think we've lost sight of the story. I think we've lost the reason for being interested in the first place.
Gammy needs a heart operation. His mother has raised the money. Hopefully he fights the infection he now has and can get the surgery, going on to live a long and happy life.

The rest is none of our business.

Thursday, 10 July 2014

End of treatment!

As things stand, it's 12:02am on Friday 11th July and today (after I sleep and then get up again) we will be taking off the last infuser which contains the last bit of chemo of Jacinta's treatment protocol.

I can't quite believe the 6 months are nearly over........

Here's a photo I got the other day just before my iphone was thrown to its death from the cot to the concrete floor below.....



Monday, 23 June 2014

Weeks 17-19 Diary Luke Aemia

Sooo.... I guess I was not blogging every day!

Actually I've had a bit of a lengthy bug, culminating in a lovely sinus infection, so sleep has been a high priority - and I might just have become addicted to How I Met Your Mother and felt the need to watch the entire nine series from the beginning.....

So, where we left off, I was hoping for no more transfusions, no fevers and starting again on the 26th. That's pretty much what we did. We had a blood test each week and the neutrophil counts were never below 1.0 after the last one I mentioned.

So we reported in on the 27th for a bone marrow aspirate (BMA) and to start chemo for round 5.
There was ridiculous traffic on the freeway so we ran about 30 minutes late for the scheduled theatre time after my hilarious snakes-and-ladders attempt at finding a quicker route. They didn't mind. I remember how panicked out I was about running on time for Jacinta's heart surgery. It's a bit different when you're coming in for a procedure that takes 15 minutes and you have one every few weeks I guess! We were number four on the list. I'm sure they could mix it up if they had to...

So we had that, recovered nicely and headed straight upstairs (via breakfast).  We saw the big head honcho lady (absolute head of oncology) straight away. She said that we would start this next round of chemo that day. No need for an echocardiogram, she said. She said they'd admit Jacinta and see how she goes and see about letting her out after a few days if she was going well. I said that the nurse co-ordinator had told me we'd be doing it as outpatients. She said we'd be doing it as outpatients then. (I love the slightly disordered chain of command on these things.)

So we went out the back (the fancy name for the back area which is just as lovely as the front area, with a fish tank and toys and televisions and paints and a few beds and lots of treatment chairs etc, plus tea and coffee and sandwiches and little nice things for parents to munch on. There's chemo and blood products there too!

They had to run one new drug, called etoposide, for one hour. Then they hooked up the cytarabine to run over 24 hours. It was in a little canister, which they call a "Baxter", quite imaginatively since it's made by Baxter.  It's spring-loaded in super slow motion. There is a little balloon in there, which is filled with the chemo. Unfortunately the best way to describe it is that it looks like a filled-up condom. I imagine.

So we went home with this in a bum bag. (I'm not sure what these are called in other countries - I'm pretty sure it's not "bum bag".) This didn't stay around her waist in the slightest and was in danger of ripping her line out. Instead we went with the pinning option. This wound up tearing pretty decent holes in Jacinta's singlets...

The first three days we ran both drugs and had to come in. The fourth day was just the cytarabine which could be changed from home. The nurses came out to us, which is soo much better.
The week passed, the 6-hourly eye drops ended and life went back to normal, pretty much.


Tuesday, 13 May 2014

Week 16 Diary Luke Aemia

Monday 12th May

So Jacinta had been looking a bit bruisey the last few days. She had shown up a bunch of petechiae and cut herself somehow on my computer, reopening the wound twice like a warfarin junkie.

When we presented to Day Oncology on Monday she was quite pallid. We had our finger prick blood test in pathology (after waiting in the wrong spot - which the receptionist had indicated - and then after going to the right spot being completely ignored until I realised they were calling the person with the number 4 after ours...grr..) and thankfully I had requested a couple of backup bandaids. Yeah. The first one was needed about 10 minutes later.

Jacinta loves to chew on her bandaids. When you combine teething with low platelets it's a bloodbath, plain and simple. I realised it had come off because there was blood on me. I looked to find Jacinta looking like a vampire, with blood on her sleeve and the legs of her onesie. I got a fresh bandaid on. It came off again. More blood on my shirt and on my keys, on her face. It was getting ridiculous. Fresh bandaid on. Off it came, blood on the chairs. We saw Dr Molly, who agreed it was hilarious, and ordered transfusions of everything without even waiting for the bloods to come back.

We bled again all over the reception desk. Thankfully they had their own supply of fresh bandaids. I got two on this time, which gave us a bit longer. I managed to dispose of the evidence, getting Jacinta into her day clothes after her weigh. (She's putting on weight. Yay!)

So as I suspected we were in for the afternoon for blood products. There's not much that's more mind-numbingly boring than transfusions - unless you have issues with plasma. If you have issues with plasma, transfusions are anything but boring! We do not have issues with plasma.

My middlest managed to entertain herself for 5 hours with very little help from me, which was amazing. My deepest fear when we are there and she goes off to play is that she will get into an argument with one of the sick kids and sock them one in the head. Thankfully, so far, no violence.
She got a lucky dip for being so good. I think she deserved it.

The good thing about Day Oncology is they go home at 6.30, which means, so do you! They'll cut it as short as possible to make sure everyone gets out the door on time. No "I'll just run the flush a bit longer while I find out what's happening....". Nope! We're on top of things.

So it seems our neutrophils are at .73. This means we could theoretically start chemo if we had to. We can't yet because we're only at Day 14 or so, so we don't know if we're going down still or coming back up. It would appear, since we needed platelets, that we are going down. I guess we keep away from the sneezers and the coughers now. Fingers X that's the only transfusion for this round, no temps and back in on 26th. Fingers X.....

Week 15 Diary Luke Aemia

Monday 5th May

So I've skipped Sunday because nothing much happened medically and we had an appointment on Monday - or so the piece of paper said.

In actual fact we got there after going via pathology and having bloods done only to find that the appointment should have been for Wednesday. There had been much changing of minds in the admin/doctor area the previous week and they had booked and rebooked the Wednesday appointment. My sheet said the Wed had been cancelled and my appt was Mon. In fact that Mon had been cancelled and Wed rebooked. No matter, we saw Dr Molly anyway. We love Dr Molly.

Jacinta's white blood cells (neutrophils in particular) had gone up, which is interesting, to a super nice level. (About 3.0) So no need to avoid Chadstone that day.

We started thinking about how the next round might roll out. Dr Molly showed me the protocol which is 7 days' continuous infusion (yuck!) of something toxic with 3 days' continuous infusion at the beginning of that 7 of something else toxic. (Two at once for the first few days.)

Dr Molly seemed to think that we might have to be in for the days where we had two running. Hmmm. I guess we'll see. If nothing goes awry, we're looking at 26th May for this. The rest can be done at home I believe.

Tues 6th - Sat 10th May

One long week of having a yucky fluey thing and teething. Jacinta's been fine in terms of hospital admission parameters. Managed fine (not enjoying though) with the flu/cold. No temps to speak of.
Next appointment Monday.

Wednesday, 30 April 2014

Week 14 Diary Luke Aemia

Sun 27th - Mon 28th April

Nothing much happened. Jacinta had a bit of trouble sleeping, quite unsettled so spent both nights in with me, feeding every hour or so, which was a bit exhausting. Teeth do seem to be on the horizon. 

Tues 29th-Wed 30th April

So, in a flash, admission day had come around.
We said goodbye to my eldest and middlest, at school and kinder drop-off respectively. Then we headed in to the hospital for our 10:10am appointment. We managed to find a park, probably one of the last 20 or so. Had we been 10 minutes later I think we would have struggled to get one. 

We headed straight up to Day Oncology for our appointment with the Oncology Consultant. She was running pretty late. We didn't get in with her until at least 11.00. Quick visit there, a double-check that we could have most non-chemo things orally to avoid any stopping of the chemo, and then to get blood taken before we started. She couldn't sign off on the order for chemo without bloods from that day. Had I realised I'd have done them first! She also asked me again to chat to another family who had a little baby starting our chemo protocol for AML, because Jacinta had done so well. She commented that Jacinta's kind of the poster girl for this protocol. She was really impressed at how well Jacinta's been throughout the treatment. 

So we got the bloods taken and a dressing change etc then went off to eat before we were hooked up. The bloods took a while to process so it was about 1.30 when they finally came through with the packs and got us hooked up. This means we won't be making it to the start of the wedding reception on Saturday, but we're still going for making it for some of it!

We hung out in Day Oncology, chatting with friends we'd made in earlier stays on the ward. It's one of the silver linings to being in the cancer ward, that you make so many friends that you're never short of someone to talk to whether you're on the ward or in Day Oncology. Remembering their names is another story, but you can usually remember their diagnoses & prognoses! 

The nurse came in to revise an earlier estimate that we'd be on Kookaburra ward around 3pm. We wouldn't. It'd be later. It occurred to me upon writing this that there would be some people who'd demand to know when they'd be in their room and why it was taking so long. Almost in the same thought though, I realised that it wouldn't be any of the parents who've been on the ward. One thing you get used to, if you aren't already, is that you just can't plan. As soon as one thing is a dead certainty, it's almost sure to change. It's not always for the worse that the unexpected happens, but it just means that you can't plan. There's never a 100% chance. Mind you, there never actually is anyway....

One by one people left and the nurse showed us a separate room with a cot that I could put Jacinta down in and not have to hold her all the time. Things got pretty quiet, Ben and Holly's Magic Kingdom came and went from the TV and I took to walking around outside our room again, gently jogging their memory that we were still there, in case our being tucked away in a different room had made us slip their minds. Around 6pm the nurse came in and said that by the time they were ready to go home at 6.30 someone from Kookaburra would be around to collect us.  I queried dinner and we got some snack boxes out of the fridge. Loaded with gluten and dairy, as so many of the things in hospital are, I managed to get some ham into Jacinta. (Salt - oh well.)

We had managed to eat a bit when the nurse came to collect us. Its nice that we know all the nurses now. Every time someone comes on at a change of shift or collects us from somewhere, it's a little blast-from-the-past moment. I think they still get excited when they get to look after Jacinta. 

So we're over the hurdle now of coming back in to where we don't want to be. Now we just have to sit out the chemo. The strange thing is that this could possibly be our last admission. If Jacinta does what she did last time, she won't hit 0 neutrophils or anywhere near it, and she won't need to stay in hospital. So we've said goodbye to a couple of people and there's a chance we might not stay with them in hospital ever again....how strange. Of course, you can't plan, so there's as much a chance of that as there is of my being struck by lightning or of our car turning into an orange. 

Today we just did the being on chemo thing. Stuck to the pole. Still, it was Wednesday so there was my middlest and she had kinder and there was music group and we had a lovely visitor so the day flew. 

Early to bed was good so I'm hoping to get a little sleep before the waking begins....

Thurs 1st - Sat 3rd May

Well, not much happened for the next few days. The chemo kept going, for 96 hours straight. We had a shared room which was good for Wed since there was another small child there and we could share the play mat in the space between the rooms, but they went home that afternoon and we got a new roommate.

Once you've shared a bit, your requirements for a good neighbour become few.
a) No music playing all night on their side of the curtain.
b) No loud visitors at 7.30pm
c) No big groups of people laughing and joking like you're not sitting right on the other side of the curtain...
d) Keeping the telly to a reasonable volume so you can feasibly sleep on the other side of the room if need be.

The thing with these shared rooms is that they are in reality one space divided down the middle by a curtain on your side and a curtain on their side. There's a small no-man's land between which leads to the shared bathroom. It's deceptive. It appears as though you're in your own room with a door to the bathroom. You're not. You can hear every single thing that goes on across the curtain. You can hear them talking about you. You can hear their discussions about the footy. You can hear them talking about their diagnosis - again. You can hear them recount the story of their visit to the sperm bank - again. You can even hear them talking about how the nurses love them and how they have everyone wrapped around their little finger.....if only the nurses knew, wouldn't they have something to say!

All in all, our neighbours for the last few days were pretty good. I could tell they were trying to be quiet. I did hear the patient saying he thought they were noisier than us at one point, when a nurse or doctor was asking how he was going in the room, which was reassuring. It was fascinating to talk to his mum in the tea room, hear how he had all the nurses in stitches half the time and how bright he was and how well he was taking it all. Then I'd hear him telling his visitors himself about how his heart scan had shown up that it was made of gold - and how the nurses had all loved that and talked about it for days.

He seemed to think he was the most popular patient on the ward. Oh yes? Really?
(You clearly haven't been around long, young man....)

It was most fascinating of all when I would pass his room and he would look right through me like I wasn't there. He was chatty and upbeat with his visitors, and he could hear me, and I could hear him. There were no secrets. He had told someone that I got along well with his mum at one point so I know he knew I was up for a chat. Still, the few times I went past, it was a surly sour look on his face. Not a smile, not a wave, not a "hi". Nothing.

I imagine that was testament to how hard he was actually working to take care of everyone around him. Nothing in reserve. He did actually comment to one visitor that they wanted to move him to be in a room with another teenager so they could socialise a bit, but he preferred to be with us. He didn't want to be socialising with anyone. Just diagnosed, I can understand. When you're doing Year 12, working nights, playing basketball and you suddenly get hit with leukaemia, how the hell do you process that? (I really did hear everything on the other side of the curtain!)

So anyway, we were entertained by our neighbours for the last few days, and counting down the days til the wedding. The UK wedding party for Australia happened on the Saturday and we were hoping to get out as fast as possible to make it for as much as poss. They rushed it as much as they could, but we didn't get off the pump til about 4pm which got us out of there close to 5pm and to the farm by 6pm. We made it for the company, if not the actual event. Better than the last one!

So that discharge was touted as the final scheduled discharge, which is very exciting. I guess we'll see how things go.

Tuesday, 22 April 2014

Week 13 Diary Luke Aemia

Sun 20th - Tues 22nd April.

Sunday morning we woke up and Jacinta was feeling a bit hot. She had been under the covers with me and in very warm clothes, but felt hotter still than that. I got out the thermometer. 37 degrees. Hmmm....

We'd got this far and I certainly didn't feel like suddenly rushing in to the hospital on Easter morning and relocating lunch in to the hospital, like a big cliche, and causing everyone so much trouble. (They had planned for this eventuality, it being my birthday also and guest of honour - sort of - but I wanted to avoid it at all costs.)

I took off a lot of Jacinta's clothing (it's not my colour anyway....) and we carried on as usual, getting ready. By the time we got to lunch she was feeling a much better temperature. It's funny when you're dealing with temps a lot, you can really feel a 37 from a 37.5 from a 38.  Cool skill to have when you're tempering chocolate without a confectioner's thermometer.

Monday was fairly uneventful. So uneventful in fact was it that I cannot remember a single thing that happened in terms of her physical state etc.

Tuesday was her appointment for echocardiogram, bloods, wound care and maybe doctor. Everything was pretty straightforward. The hospital was comparatively empty - possibly everyone was still hung over from the Good Friday Appeal.

We ran in to the nurse co-ordinator who told us that her blood results from Saturday were 'awesome' and that we could start the chemo as planned next Tuesday. Everything as expected. Poor Jacinta, when she's older, if she's not getting 'amazing' or 'awesome' on every school report, there'll be trouble!! She's setting the bar pretty high for herself.

We popped in to the ward to see our good friends. It was nice to hang out for a bit and not get poked or prodded or kept upstairs for days on end. So we're out for another week, health permitting (though by the sounds of those awesome bloods I think we'll have no trouble with infections).

One thing I'm dealing with at the moment which is very weird is my memory. It's extremely faulty. The other day I got in my car to meet up with my husband across town. I went to start the car and found that turning the key was achieving nothing. The lights were fine and the radio was fine. There was nothing going on when I turned that key. I couldn't work it out. Usually when the battery's had it you get nothing, or if the lights etc are working you get a feeble attempt from the car's engine. This was chalk and cheese.

I rang my husband and told him I couldn't get it started. It was a few minutes of debate about calling the RACV or having him come back and jump start us, when I mentioned that I felt like I was forgetting something and he asked me if I'd pressed the immobiliser button that is with the keys, which you have to press every single time you start the car. Ten seconds later we were on our way.

Then last night we were at another family birthday, just about to leave when I realised that there had been talk of my quartet rehearsing that very night and that there had probably been discussion about it all day on facebook with me conspicuously absent, and I had completely forgotten all about it and even left my phone at home. I got home to several missed calls and messages re the rehearsal that hadn't happened. Must remember tomorrow...must remember tomorrow....

We forgot ballet this afternoon too.....

We'll get there!

Wed 23rd-Sat 27th April.

Nothing much happened.