Harper, Eliza & Darren: Becoming a family facing cancer

“I thought to myself that this lady is off her flipping tree if she actually thinks that MY child, MY perfect child, has mother-flipping-leukaemia.”

In late May 2018, Harper contracted bronchiolitis, and no matter what we did, we just could not seem to get rid of it and get her to a full recovery.

On Friday, 22 June 2018, she was due for her ‘nan-nan day’, but I (Mum) thought that for peace of mind I would book her in with our GP. I wanted to see the same doctor who saw her when she had bronchiolitis. He’s a “no fluff” doctor. If he tells me everything is fine, then everything is fine. Unfortunately, I will never forget walking into his office.

He looked shocked. He didn’t even touch her, he just put his hands in the air and said: “She’s anaemic. I want a blood test done today. If the nurses can’t do it here, if they’re not confident, if they can’t get a vein, you need to take her somewhere today that can do it.”

Within three hours of our appointment and blood test I received a phone call back saying that Harper’s haemoglobin was 32 and that she needed urgent medical attention. He was writing me a referral for emergency. (If her haemoglobin had gone into her 20s, her heart would have stopped.)

I phoned Darren (her Dad), I packed Harper’s things, put our dog ‘Penny’ outside, scooped my sleepy baby (Harper) up out of her cot, walked out our door, got into the car, and reversed out our driveway not ever thinking that it would be the last time Harper and I would be home for a month.

Our doctor was waiting in the carpark with our referral. He gave me some supportive words and off we went. It was later in the evening that Harper would receive her first of 10 blood transfusions over the next nine months. She sat on my lap in an ambulance stretcher as we were hoisted up into the ambulance, waving goodbye to our family that had quickly come to our local hospital for us. Hearing Harper’s little voice asking if they were all coming too made it even harder to hold back tears.

We were in emergency until midnight and were later found a bed on a ward. I slept bedside, her holding her hand through the bars of her cot, and her daddy was sleeping down the hall. I fell asleep thinking to myself that this would be one of those stories we tell her when she’s older, about her crazy stint in hospital. ‘We’ll be out over the weekend,’ I told myself.

We woke on the Saturday morning to the news that they suspected Harper had tansient erythroblastopenia of childhood. It’s a slow-developing anaemia that occurs in early childhood and is characterised by a gradual onset of pallor. This had stemmed from her bronchiolitis and would usually have fixed itself on its own by now.

We stayed in hospital over the weekend with continued blood tests to make sure that her haemoglobin was on the up and we would be able to be discharged early in the week.

‘Thank. My. Stars!’ we all thought. They seemed to know what it was and that it was nothing serious. This would just be a short and crazy story we would tell her when she’s older about her first trip to the hospital.

On Monday, 25 June I woke up feeling hopeful that we’d be sent home. But I just had this pressing feeling that I wanted to get out of there as soon as possible before they could tell us that something else was wrong.

We were actually due to be leaving for Queensland that week for a wedding, with Harper, and we were going to make it a little holiday. Doctors were still happy for us to go and were just talking with us about how we could organise a blood test with Harper up in Brisbane, just for monitoring.

I think we were approaching midday when life got flipped on its head.

A couple of nurses were already with us, probably just doing the usual set of obs with Harper, and I felt like suddenly I just turned around and there were about five doctors standing there. 

“Would you mind just playing with Harper while we have a chat with Mum and Dad?” one of the doctors asked the nurses.

We walked out of the room and down the hallway and I held Darren’s hand, definitely feeling that something was off, but also thinking; “This is a bit fancy having all of these guys discharge us!” and, “Are we about to get in trouble for her haemoglobin being so low?”.

There’s not a lot of the conversation that I remember, but I remember very much how I felt, especially after one of the doctor’s said: “Unfortunately, it looks like there are some abnormal cells consistent with leukaemia.”

Darren put his head in his hands, and I rubbed his back and told him that it was okay. I thought to myself that this lady is off her flipping tree if she actually thinks that MY child, MY perfect child, has mother flipping leukaemia.

But the doctor continued. “0% to 9% abnormal cells in under 24 hours.” She went on to say that whilst they were sure they could tell what it is because of its characteristics, a diagnosis couldn’t be confirmed until abnormal cell counts were at 25%. But because of what they knew, they didn’t want to wait for it to get that high.

They wanted Darren and I to give permission to a bone marrow aspirate and lumber puncture to confirm the diagnosis quicker, and whilst they were in there, they may give her intrathecal chemotherapy in her spinal fluid.

Everything she said just felt like a physical and emotional blow, and I just kept curling myself into Darren’s side – I couldn’t hear it anymore.

We were absolutely crushed, absolutely confused and angry at life for thinking that we were now “cancer people”. I couldn’t think of facing it, and I didn’t want this journey.

When we eventually left the room, we found Harper in the playroom with her nurse, just playing in the toy kitchen. She was happy to see us and was showing us all the things she was cooking and was serving us food. She was completely unaware of how her little life had just changed and how she was about to embark on the most challenging journey of her life at not even two years old.

We sat with her in the playroom for the longest time before deciding that it was time to call our families. I would have liked to have waited until a diagnosis was confirmed, but that was days away, and I don’t think we’d have the energy to hide it from people.

Our parents were there within a couple of hours and we did our best to recite the information that we had been given. That night, I was the “rookie”, the “newbie”, on the ward. Harper and I held hands through her cot whilst she fell asleep, and my sleep routine would set the tone for my next week or so: crying into my pillow and apologising to my baby.

The next few days were incredibly challenging and raw. Half of me was still HOPING that everyone was wrong, something had gone wrong in their labs, that this was all just a big mistake. The other half of me was sitting, shaking, and bracing for the news that we didn’t want to hear.

Her diagnosis was confirmed on Thursday, 28 June 2018.