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.