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Real storiesHarper, Eliza and Darren: Becoming a family facing cancer
Harper, Eliza & Darren: Becoming a family facing cancer
“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.”
Eliza describes her whirlwind of raw emotions, from denial to despair, on learning of her daughter’s cancer diagnosis.
“It has certainly been a journey and a half. And let’s be real: cancer is a journey everyone fears for themselves and their family.”
~ Eliza, mother of Harper
We’re Eliza and Darren, the super proud parents of Harper, our super courageous little girl who battled Acute Lymphoblastic Leukaemia Type Pre-B when she was just shy of two, from June, 2018 to June, 2020.
Everybody is also a little freaked out by cancer. It’s an unforgiving disease. It’s the reason why you’re too scared to look up your or your child’s symptoms on Google. It’s the reason why you watch a cancer story on the news – and whilst your heart breaks for that family – you thank your lucky stars it’s not you and your family.
Well, that was me, until it was us.
This is a glimpse into our life through our stupid journey of childhood 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.
“Upon receiving such devastating, life changing news it was extremely comforting to know that Redkite knew the practical tools that we would need to get us through our time in hospital.”
After Harper’s diagnosis was confirmed, our counsellor later returned to us carrying this big beautiful, red, and white striped bag. At first glance, I couldn’t believe how nice, neat, tidy, and modern the Red Bag looked. They didn’t just have gimmicky things for parents to collect dust in a storeroom until they were needed.
It’s beautiful bag for parents in our position, produced by the lovely brand Country Road, and handed out by the fantastic people at Redkite. I couldn’t believe such a lovely thoughtful gift just to be given off the bat, existed for parents like us.
My amazement continued as we were introduced to the bag and went through its contents. Inside we found, lovely soft red blankets, travel coffee cups and water bottles, a diary, a toiletry bag, a cooler bag filled with hot chocolate sachets – it was all so amazing and a little bit overwhelming.
Upon receiving such devastating, life changing news it was extremely comforting to know that Redkite knew the practical tools that we would need to get us through our time in hospital.
Redkite also provided us with staple items that were of great comfort and assistance to us to get us through our journey.
Intensive treatment for Harper was meant to be for eight months, but with unfortunate infections and blood counts not meeting the criteria, our intensive treatment wrapped up just shy of nine months.
We ended up having a few stints of living away from home where I would pack a lot of our Redkite items (reusable coffee cups and cosy blankets) and we used our extremely handy food vouchers that Redkite had provided us with through Coles.
Whilst living in Randwick, I kept these in my wallet and made that my spending money for our time away from home.
As Darren was back home keeping our small business and household running, receiving the Redkite vouchers was extremely helpful in keeping to our budget.
We really cannot thank Redkite enough for the seriously wonderful support they have provided to us and so many other families going through childhood cancer.
We are now on the other side of treatment, Harper has even finished her antibiotics in September that she has been taking since treatment started and we were able to celebrate her completing treatment as a family of four this year as we welcomed our second beautiful girl, Adeline, in December 2019.
We are so grateful to now move on with life with our two gorgeous girls, and it’s not lost on us that we are some of the lucky ones that are able to do so.
Please continue to support Redkite so that they can help more families like us see the end of treatment and their life after.
Diagnosis is only the first step in what for many families is a long, complex and challenging experience with their child’s cancer. Eliza made the most of Redkite’s support throughout Harper’s treatment and into remission.
To access any of our services, call, email, or let us know your details and we’ll get in touch with you.
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