The good fight

I’m not a crusader. And I’m not a crusader parent. Obviously I was thrust into the previously distant world of childhood cancer, and came to know a lot of things that I wish I didn’t have to know. This kind of thing is so often the catalyst for people to dive head-first into raising awareness and funds, for supporting similar causes, for attending events, for keeping up with news in the field.
I cope with things by… well, ignoring them. I follow some pages on Facebook, I flick through the Chemo Chronicle that CHW sends us, but I find it difficult to go much deeper than that. Maybe because I was so intensely immersed in it only recently. Maybe because the underlying driving force for our family life at the moment is ‘keep the cancer away’. The ever-present unspoken. It doesn’t need to be said. It’s just there. It will always be there. One parent wrote in the CC, “I can imagine myself on Thomas’ wedding day putting my hand on his forehead to check his temperature! It’s just hard not to worry.”
Maybe because I’m lucky enough to be able to ignore it, to be able to call it ‘underlying’. Goodness knows, I know. I know.

By the way, hey, blog. I’m so drained that I’m struggling to finish this. Each word is… being painfully extracted from my brain. I think it’s time to accept that this is just not where my head is at right now, and for the foreseeable future.

It’s been a while, I’m finding it difficult to write, but things are going relatively smoothly. I started this draft almost six months ago, so here’s my timid return…

Last year Devin was given the opportunity to make a wish, thanks to Starlight Children’s Foundation. It was actually a difficult concept to explain to him, and a lot of the popular wishes (holidays, computers, meeting favourite celebrities) kind of went over the top of his 4-year-old head.  Something he’d repeated regularly, though, from pretty much the time he could speak in sentences, was that he wanted a dog.
We’d been talking about it before he got sick, and despite our situation being considerably different, we eventually (about six months after Dev was approved for a wish) decided we were prepared to take on a puppy, if Devin so… wished.
He did, and after a few weeks of communication with our coordinator, Nicola, Devin was presented with a lovely little Cocker Spaniel puppy. Jene had thought of some name options, and Devin chose Remy. Our local Petbarn also donated a credit account to their store, as did Duncan McGinness Veterinary, which was a lovely surprise.

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He even got his own personalised name tag.

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Now, we weren’t expecting it to be easy, but in hindsight, having a puppy and a six-month-old baby at the same time was particularly ambitious. In fact, I think a puppy is harder work than a baby for those first few weeks. There was strain. Jene had majority responsibility of Remy, I had majority responsibility of Miriam… for a little while, I thought it was a mistake. But, of course, things got easier, and Devin and Remy love each other. Miriam and Remy are a little troublemaking team, which is as cute as it is frustrating.

The writing gears are rusty and I’m tired, so I will leave you here. If you haven’t already, please have a look at Starlight, they’re a fantastic organisation that does so many wonderful things for sick kids.

Nine months later…

… We are home. When I was given the diagnosis, I was also told it would require five to six months of treatment in Sydney. Obviously now I know they can’t possibly account for things like ongoing low blood counts or a three week hospital stay for, essentially, a cold, but for a while it felt like we’d never get back. And actually, once we’d settled into the self-contained unit, it felt normal to be there. And comforting, in a sense.

Being home is weird. It feels both satisfyingly familiar, and like I’m living someone else’s life. And in a way, I am.
The house we walked into three days ago belonged to a carefree three-year-old and his somewhat angst-filled but generally ok parents who were dealing with grief, gout, financial stresses, and a new pregnancy. The house did not belong to an embattled four-year-old, his weary and heartbroken (though gradually repairing) parents, and his completely fresh and innocent baby sister.
It’s simultaneously like being warped back to June last year, with extra memories, and like I’ve missed a chunk of my life. I don’t feel connected to the stuff here. Or maybe I do, but it’s all a painful reminder of how much has changed in such a short time. Either way, my instinct is to get rid of it. I know that would be a silly thing to do right now, so soon after arriving home, but this is how I currently feel.
We knew it would be tough to be home, and we were gently reminded that things may not be easy – I’m aware of what I’m feeling and why I’m feeling it, but, much like the post-baby blues, knowing doesn’t make it hurt less.
It’s just a matter of being patient.

Anyway! On the lighter note of Dubbo wasting no time in displaying its Dubbosity since we’ve been back, I went to the sushi place that we once frequented, only to find their chicken katsu had been renamed ‘crumbed chicken’.
We’re back.

The news in short –

Devin is doing fine, has actually finished intensive treatment. He has begun maintenance (which still involves daily oral chemo and weekly blood tests), and stopped again because his blood counts are slow to recover. That’s normal, apparently – his bone marrow has been absolutely pummelled and is exhausted. We can go home, but we’re waiting for the surgery to remove his central line. They asked us if we’d go back to Dubbo now and come back for the removal? Um, no. It’s easy to say “go home and come back”, but in practice that’s, “pack up all your stuff, drive 400km with a 4 year old and an infant, unpack all your stuff, pack some bags again, drive 400km with a 4 year old and an infant, stay for a day or two, drive 400km with a 4 year old and an infant, unpack your bags again.” No, thank you. 

Miriam is adorable and exhausting. She sleeps quite well at night, in our bed, after being nursed to sleep over two hours, but is not so great on the naps during the day. She practically lives in the Tula.

I could write here forever. As in, I have that much to write about, not that I actually have the energy or clarity of mind to get it out.

I just want to go home. Even though I know it will be hard and I’m sure I’ll cry a lot during the re-adjustment.

And the food. We’ll miss the variety of food…

How to be diagnosed with leukaemia.

One of the things I am asked most often, after “how are you going?” (and I’m trying to write the epic tome that is ‘how I’m going’), is “how did you find out it was leukaemia?”
So here is how we found out Devin has leukaemia.

In amongst the stress of being newly pregnant, and grieving the loss of my dad, and Jene having a particularly bad flare up of gout, Devin started getting sick. I expected it to be a cold. I awaited the runny nose and temperatures and coughs. He had only been sick a handful of times in his life, and I thought this would just be another rare time.
(Well, it was rare…)
He started getting sick, but it never eventuated into anything. He would be tired and mopey and not terribly hungry for a couple of days, and then back to normal for a few days. Sometimes he would complain that his legs hurt (of course we didn’t know at the time, but bone pain is a symptom of leukaemia). It was a cycle that continued for a couple of weeks.

On a Friday night, Devin stayed with his grandma to give me a rest. He stayed the next night, too, after I’d checked that he was still ok, and when I picked him up on Sunday morning, he was half-asleep on the couch watching TV, and so limp and reticent to move that I had to carry him to the car. After an hour back at home with no improvement, and with Jene’s insistence, I took Devin to the medical centre and had Mum meet me there. (Jene was still unable to walk.)
We didn’t wait long for a doctor. The very second we sat down in the room he commented on how unwell Devin looked. I explained his symptoms as best I could, and with very little preamble, the doctor referred us straight to the emergency room. Mum later said that she saw him pacing and eating an apple when we checked in, and once he set eyes on Devin he didn’t take them off him. I am quite sure he suspected something serious, and I’ll always be extremely grateful for his immediate action.

We were taken into triage straight away at the hospital. They took the usual observations, then put numbing cream on Devin’s hands and inner elbows for blood tests. He fell asleep on me while we waited. And waited. Eventually the bloods were taken, and a cannula was inserted. Then we waited again, this time in a room in the ED. A different doctor came to see us, a paediatric registrar. He said the blood results were inconclusive and they wanted to do them again. He also said he was pretty sure it was an upper respiratory infection, and that if he had seen us first, he wouldn’t have bothered with a blood test. (Yes, confidence-inspiring.)
The second results came back. The registrar spent a long time on the phone to the head of paediatrics. Finally, we were moved to the children’s ward for ‘overnight observation’, while being told that it was very likely “just a virus”.

Late that night I was visited by another registrar. The reason they were having trouble with a diagnosis was that Devin’s blood results were showing levels that didn’t exactly match with either a virus, or ‘something else’. He mentioned that they were 75 percent sure it was a virus, but there was a chance it was something more serious (no one ever said what exactly ‘more serious’ was) and Devin and I might be flown to Sydney the next day “just to be sure”.
We were flown to Sydney the next day. Do people get put on a plane to the best children’s hospital in the state, possibly country, “just to be sure”?
No. They do not.

In the ED at the Children’s Hospital at Westmead, we went through exactly what happened in the Dubbo ED. Blood tests, repeating the story of why we were there, waiting. And waiting. After over five hours of waiting, we were moved to a ward. It was after 11pm and we were both exhausted. I was told that Devin needed to fast in case of a surgery the next day.
In the morning, we were visited by a doctor. She was very straightforward, but not unkind, in telling me that they were quite sure it was leukaemia. I listened and nodded while wiping away tears. I wanted to crawl into bed next to Devin and cry forever, but that would not have been helpful, and I needed to listen. The surgery was for a bone marrow aspiration, to determine the type of leukaemia; a lumbar puncture, to see if any cancer cells were in the spinal fluid; and for the insertion of a central line, for the future administration of chemotherapy.
My youngest sister, Amanda, arrived from Wollongong, just in time to keep me company while Devin was in the operating theatre.

Now, I’ll recap. This all happened in just over 48 hours. I had to leave Jene, who was in a lot of pain himself and not able to walk, alone at home. He had to wait for my phone calls to know what was happening… He had to learn his son had leukaemia from five hundred kilometres away. I had to take everything in and make immediate decisions on my own. And then I had to wait for my son to wake up from general anaesthesia, six weeks after my father hadn’t.
Honestly, people do what they have to do. At the time, yes, it was all horrible, but I wasn’t thinking about it like I do now. They were all just hurdles that I had no choice but to jump. I wasn’t purposefully being strong or calm or whatever – I was just surviving, because I had to.

Two hours later, Devin was awake and upset, but well. The central line meant that his two cannulae could be removed, and his overall disposition improved after that.
The next day was the date on all his paperwork as the official date of diagnosis. My mum arrived, and Amanda came again, too. They were there when I was told the diagnosis (pre-B ALL), general treatment (5-6 months intensive, followed by maintenance), and prognosis (good, especially at his age). We were moved to Camperdown Ward, the oncology ward, and for the next few days shared a room with a 4-year-old boy who had been diagnosed with the same three months earlier. His parents were lovely, encouraging, realistic, and it was comforting to talk to them.

Treatment started the day after his diagnosis – the start of five unpleasant weeks on prednisone (a steroid to kill cancer cells). Mum stayed for a few days. I was visited by Michelle, one of the incredible women from the BabyCenter birth club I joined when I first pregnant with Devin, and after a tearful greeting (it was the first time we’d met in person) she presented us with, among other gifts, a mini iPad for Devin, on behalf of everyone in the group. There were more tears. And that iPad has been a sanity-saver for all of us.

After ten days in hospital, more visitors, lots of different nurses and doctors, some blood transfusions, x-rays (including an emergency 2am one in the room), care packages from Cure Our Kids and Redkite, a bout of gastro for me (yeah, timing!), terrible sleep, and some truly awful steroid tantrums, Devin was discharged from hospital. Jene arrived with my middle sister, Erinn, that same day – his foot was still not well, but I’ll go into that whole saga later. (Spoiler – it involved him being hospitalised, too.)
We were told Ronald McDonald House had a room for us, only to be told at the eleventh hour that actually, it didn’t. The Leukaemia Foundation thankfully had a unit available a block from the hospital, and we were able to stay there for a week, until there was an opening at RMH. And we have been there (here) since. The unit was far less stressful than the house is, but again, that’s more than I’m ready to go into now.

How long has it been? We were flown to Sydney on the 3rd of June… It’s been twelve weeks. We have another fifteen weeks of intensive treatment left, before maintenance begins, but those fifteen weeks don’t include the breaks between protocols, or the unscheduled delays that occur due to sickness or low blood counts or other unforeseen circumstances.
And baby is due in sixteen weeks.

Jene is currently reading Neil Gaiman’s Neverwhere, and he relayed this quote –
“He had noticed that events were cowards; they didn’t occur singly, but instead they would run in packs and leap out at him all at once.”
And there is our year in a sentence.