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.

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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…

Arrival

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This is Miriam Eleanor. She arrived on December 16 at 1:50 in the morning, the day after her ‘due’ date.
I thought I’d tell her birth story, though honestly, there’s not much to it.

A week before, Monday, I had an afternoon and evening of back pain and belly contractions that felt exactly like my labour with Devin. We all got excited – but I woke up the next morning still pregnant. The rest of the week passed without incident, and I became increasingly frustrated and a little miserable – it was hot, I was tired, and we’d expected baby to have arrived already. What’s more, because my first labour was just over four hours long, we had to be ready to go at the first hint of serious pains, and it was exhausting being on high-alert.

That Sunday, I was awoken by the same pains, and though the felt slightly stronger, they still didn’t establish into any kind of pattern, even after 16 hours. I eventually fell asleep at 11 that night, fully expecting to wake up the next morning to nothing.
But, I woke up at 12:20am to something. I sat and waited. They were starting to hurt, and they were very close together. I woke Jene and called my midwife, and we left for the hospital while Devin and his Aunty Amanda slept soundly in Devin’s room.

IMG_8186This was 34 minutes before Miriam was born. The look on my face is the break after a contraction, and the knowledge that another is coming soon.

I was examined at around 1:30 upon being admitted to the birthing unit. “Only 4-5cm?” I thought to myself. “Holy fuck, I’m not going to be able to do this.”
We moved to a delivery room – and we had our pick, the entire ward was completely empty after several weeks of non-stop births. I hunched over the bed and got undressed while my midwife started filling the bath, but I knew as soon as I was there that I wouldn’t make it to the bath. I wouldn’t even make it on to the bed – I wanted to push baby out right now. So, I did.
I managed to yell, “Pushing!” so that someone could, you know, catch, and after three contractions there was a tiny, slippery person being handed up to me.

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Miriam fed for two and a half hours before I gave the ok for her to be checked and weighed. We all thought she would barely be 3kg (6.6lb), but she was a surprising 3.38kg. (During that time, three more women presented to the birthing unit, and all three gave birth less than an hour after arriving!)
Because I was under the care of a case load midwife we would have been able to go home straight away, but I sustained some damage from Miriam’s speedy exit and had to stay until the afternoon. Nonetheless, after my (rather unnecessary) four day stay following Devin’s birth, being home in twelve hours was amazing.

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Devin was weaning off a very strong steroid and didn’t show much interest at first, but as the days went by he began to open up again, and now he adores his sister. Stroking her head, giving her kisses, asking to hold her, watching me change her, repeating the soothing phrases we say to her… He also has a funny habit of calling her “Ah-Miriam”, though he knows her name and we often shorten it to Miri.

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We were surprised by her hair, just like we were with Devin’s. Both of us thought Devin was a fluke, and this baby would surely have dark hair.
Nope. Another ginger. Almost a strawberry blonde, even. Genetics are weird.

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The other thing I expected was a very alert baby. One, Devin had his eyes open from the minute he was born and they were barely closed from then on. And two, Miriam pummelled the bejeesus out of me when she was inside, so much that it was painful.
But actually, she’s quite sleepy, and only now at two weeks old is she opening her eyes more. What she is is a little wriggler – her legs are almost always stretched out, and she moves around like the hands of a clock while she sleeps.

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We’re totally in love with her, and I already suspect that both boys will be at her every beck and call.

Five months

The following has been in my drafts for a long time, though I’ve adjusted the time frames mentioned to be up-to-date with now. I won’t pretend that the past few months have been ok, or that I’ve been a good partner or mother. September especially was a largely awful month for me, I just couldn’t pull myself up. But receiving some hopeful news about our accommodation, approaching Devin’s final protocol of intensive treatment, and drawing closer to the end of the pregnancy have all made me feel much less despondent than I was when I wrote this. 

Often when I tell people, strangers, that Devin has leukaemia, I’m met with an awkward silence. I could tell them that it’s ok, I don’t know what to say, either. I could tell them that I know, it’s completely shitty and unfair. I could tell them that really, he’s doing ok, and there are lots of kids in far worse situations and could you please save that look of pity for someone else, thanks.
But I don’t. I just let the silence linger, and wait for them to ignore the information, or stutter an apology, or say something odd.
I don’t begrudge them that.
My son has cancer. It sucks, and it’s unbelievable. It’s both harder and easier than you might imagine. Very often, it’s not the illness itself that causes the most distress, but the situations that arise because of it…

We are five hours from home and haven’t been there for twenty-one weeks. For the past eighteen weeks, we’ve been living at Ronald McDonald House, in a room smaller than a hotel room. We have our own bathroom, TV, two single beds and two trundle beds. Limited space for clothes. And that’s about it. The rest of the house is shared between eighteen families. This is not to complain or be ungrateful for the accommodation, but to illustrate what is the biggest strain for me – having very little space, privacy, and time away from people. I am never alone. Ever. I’m an introvert and I have nowhere and no time to recharge by ceasing social interaction. I can’t even have breakfast without having to greet at least one person whom I don’t know… While this place is as close to a ‘home’ as we have, it doesn’t actually feel anything like one, largely because it is always teeming with unknowns. There are relatively few families that live here long-term – most stay for only a few nights, maybe a week or two, and the rooms reflect that. I find many families not terribly respectful of the others living here, either.
Devin is actually doing rather well. He has already experienced a heartbreaking amount of awfulness, but he usually carries on as usual. Most young kids do.
It’s the parents who carry the emotional scars.

So many times I’ve thought, This is it, I can’t do it any more, I quit, I can’t take another day of this. So many mornings (more often than not recently) I’ve woken up feeling physically exhausted, emotionally spent, mentally blank, and overwhelmingly frustrated to find myself at the beginning of yet another day just like the ones before it. I feel like I’m not coping, but I’m still here and Jene and Devin and baby are still here so… what is coping, exactly?
Maybe more accurately, I’m not coping well.
I started to list all the reasons why but it was becoming almost farcical. To go to the other extreme and make it really simple, I feel like I’m being suffocated – by the House, this city, the pregnancy (oh man, it is hard this time…), my emotions, my anxieties, the monotony, the general pressure of being a parent of a leukaemia patient.
I try, I really try, to avoid worrying about the future, dreading the months we have left and the years after that, and to remain in the current situation. But time is moving so slowly, and the current situation is often one I don’t want to be in…

I sometimes read the phrase, “bloom where you’re planted”, which is lovely isn’t it, except the flower that receives little sunlight and nutrition is going to struggle to remain alive, let alone flourish and blossom.

We’ve been doing this for 143 days and I’m just tired. I feel bad when Jene asks me where I want to go (for the day, for dinner, for lunch…) and I reply with, “home”. That’s not helpful, no. But sometimes it’s all I’ve got in me.

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.

Two months in…

I’ve been wanting to write a long (loooong) post, but I’m just so exhausted by the end of the day. Growing a baby is tiring enough in normal circumstances… Here are some short updates.

  • Devin is doing generally well. The leukaemia he has is the most common, and most responsive to treatment, and for that I am very thankful. I know there are parents at the hospital who wish their children have what Devin has…
  • We’ve been in Sydney for two months now, without leave. Ten days in hospital, one week in a Leukaemia Foundation unit, and six weeks and counting at Ronald McDonald House. It is… difficult in the house. I’m struggling here. But that’s for another time.
  • The treatment schedule is quite variable and they don’t tell us what each stage involves and when it will happen until we have finished the one before it. We can’t plan for anything. At the moment, we’ve been set back two weeks because Devin’s blood counts have been too low for chemotherapy. And that’s the catch-22 with the treatment – chemo destroys the cancer so the bone marrow can produce normal blood cells again, but chemo also destroys other fast-growing cells like hair and… normal blood cells. Transfusions are a fact of life for patients, and never have I ever been more grateful for the people who donate their blood. I’ve only ever donated whole blood, but will make it my mission to donate platelets and plasma when I am able to again.
  • Steroids are the most awful and useful drugs.
  • Most of the medications in the treatment are given to counteract the ill-effects of other medications, and it starts to feel absurd.
  • We’ve been getting incredible support from lots of people, especially family and friends who are organising fundraising (and doing an overwhelmingly good job at it), and my online mother’s group. I ‘met’ those ladies over four years ago, and never did I think the group would become what it has. Very, very special.
  • I’m 21 weeks pregnant now, and we know that baby is a healthy little girl! I had absolutely no preference for a daughter or another son, but I did have a feeling she was a she. We are all excited… and maybe somewhat nervous.

Obviously this is just the very tip of an emotional few months, but since I’m now typing this with one hand while prostrate in bed, I’ll have to leave it there.

From the frontline

There’s no real way to jazz it up with writing.

Devin was diagnosed with leukaemia two weeks ago. His type is Acute Lymphoblastic Leukaemia, or ALL. (As in, the universe decided to heap all the shit on us this year.)

We are in Sydney for treatment, and will be for some time. We are doing ok, under the circumstances. All three and a half of us.

Full story coming soon when possible.