Fleur’s Story

Fleur was never a sickly child, we had thankfully breezed through the last year with little illness, but when I think back now there were a couple of instances where she had this unexplained and very short lived fever on evenings in the lead up to Christmas.

Otherwise, Fleur was like every other 4-year-old, giddy with excitement at the thought of Christmas and especially Santa’s arrival. 

Had she seemed more tired lately? Possibly. But December is always a busy, social month, and it had been a hectic few weeks for everyone. A holiday at the beach was a few days away and would surely fix that.

One evening, as I bathed Fleur, I noticed a large, deep purple bruise on her hip, the kind you get from a significant knock. Strangely, she couldn't remember how she got it, and it didn't seem to hurt. I reasoned that she was a tough kid, having developed resilience from growing up with an older brother.

A few days later, we arrived at the bach for our summer holiday. Initially, Fleur was very active, so I didn't think much of the multiple bruises on her legs. However, over the next day or so, she began to look pale and lose her appetite. Instead of going outside or swimming, she preferred to lie around in the bach. Typical, that we would be struck down with sickness just as the holiday begins.

Sure enough, myself and some of our holiday guests started coming down with COVID! But covid really knocked Fleur, and it had been nearly a week she didn’t seem to be getting any better. She started complaining of a sore stomach and woke up in the mornings feeling nauseous, she felt hot to touch and sweaty at night but didn’t have a fever, she often complained of aching legs and asked to be carried. 

Curiously these symptoms waxed and waned from day to day. There were moments when Fleur would seem almost normal, joining in games with the other kids or participating in the annual beach athletics competition. Then, the next day, she would just want to lie down or have me hold her. I couldn't shake this feeling that something was off.

We psyched ourselves up to visit whitianga A&E during the busy holiday season. After a three hour wait, we were triaged, and the nurse commented on Fleur’s appearance seeming a little yellow. However the doctor assured us that we shouldn’t be too concerned, it seemed to be viral and to keep up the pamol. 

A few days later Fleur was still not getting better, we decided to pack up early and get an appointment with our GP back home. As I tucked Fleur into bed that night, she mentioned her mouth hurt and showed me an ulcer on her inside cheek. I tried to reassure her as much as I reassured myself that it was likely just a result of her being run down.

However, i still couldn’t shake this feeling that it was going to be more serious than just being run down. That's probably why I found myself in tears even before we entered the consulting room the next morning. Our GP wasted no time and immediately sent Fleur for a blood sample.

When the GP finally called that afternoon, he informed us that the blood results were indeed abnormal, and we needed to go to the hospital right away. The emergency department was expecting us. In the ED, two doctors examined Fleur, asked a few questions, and then began to explain her blood results. I have little memory of what the doctors said that day, but I vividly remember holding my breath, waiting for them to say the word, "leukemia".

And then, smack, there it was. It sort of hung in the air. 

Cancer. 

From that moment on, it felt like we were watching ourselves in a movie, but without the ability to fast forward through the scary scenes. To be honest, everything scared us. We were taken into a room where Fleur's chest was x-rayed. She was connected to monitors, and then we had to hold her down while she begged us to stop so the doctors could insert an IV line and begin a blood transfusion.

Fleur's initial blood results were dangerously low. Coupled with a persistent fever and a positive COVID test, she was monitored hourly throughout the night. The next morning, she would be transferred by ambulance to Starship, where she would have her first general anaesthetic. This was to place a port under the skin in her chest for easy and repeated vein access in the future, and to perform an initial bone marrow aspiration that would confirm the type of leukemia she had. 

Everything was happening so quickly that we barely had time to catch our breath and process all the information we were receiving. In an instant, we found ourselves watching Fleur being hooked up to her first bag of chemotherapy. This hit hard, real hard. Honestly, it hasn't gotten much easier; every bag of chemotherapy still tugs at my heart. Since her diagnosis Fleur has received a cocktail of toxic drugs, including oral, intravenous and intratechal chemo (via a spinal tap) every 7 -10 days. To date, she has collected over 136 Beads of Courage to mark the various procedures she has endured. These include 12 beads for the number of general anaesthetics, 32 beads for the chemotherapy treatments, and 3 beads for the rounds of steroids.

The treatment has been gruelling emotionally and physically. Like most children Fleur has endured a range of side effects. The chemotherapy has caused fatigue, nausea and vomiting, reduced appetite, constipation, tingling sensations in her body and heart breaking hair loss. Additionally, the rounds of steroids have caused changes to her taste, restlessness, mood swings, muscle weakness, have left her puffy and exhausted. 

Although seemingly trivial compared to everything else, witnessing Fleur’s hair loss was one of the most heart-wrenching aspects of her treatment. As her hair began to shed, we spent an evening braiding what was left into tiny plaits. Then she sat on my lap in front of the mirror in our living room as we shaved off each plait. I tried hard to downplay its significance for Fleur, reassuring both her and myself that it was just hair and would eventually grow back. But my eyes still flood with tears at the memory of shaving off the last of her hair. 

Fleur, viewed the hair loss as just another bump in the road. Instead she found the hardest part of treatment was the isolation. With no immune system, a temperature means a medical emergency. To avoid this, we have had to keep Fleur fairly isolated, monitoring her blood results and ensuring friends and family were well before arranging visits. She has desperately missed her friends, teachers and the other activities she used to enjoy, such as sports and birthday parties. 

Her 6 year old brother Greyson has also been through a lot. Despite our best efforts to keep a sense of normality in his life, we know that Fleur’s diagnosis and treatment has been hard on him too. Grey has been really concerned about Fleur, but understandably, he has also resented the disruption in our home, and at times felt jealous of the gifts and attention showered on Fleur. We tried explain everything as best we could to him, reassuring him that Fleur hadn’t done anything to cause the leukaemia, it wasn’t contagious, and assure him that she would get better. We also explained that Fleur would look different because of the treatment and that treatment would take time. We wanted him to feel part of the team, even if he wasn’t always physically with us, and more than anything we wanted him to be there for Fleur, as she really adores him. 

Fleur’s father, Jackson didnt have the chance to show how he truly felt as she battled cancer, he is the backbone, the glue who kept it together. While my anxiety soared and my mind raced to the months ahead, Jackson consistently grounded us, focusing on the things that immediately lay ahead and guiding us through each step. Despite feeling powerless at times, particularly when the treatment, especially the steroids, caused Fleur to cling to me and push him away, he remained staunch. He took on the unspoken tasks, maintained his full-time job and commitments to provide for our family's needs, and picked up the pieces at home, especially with Grey. The role of dads in a child's cancer journey are often underestimated. While much of what Jackson has done, and continues to do, goes unseen, he has been an incredible dad and source of support throughout.

I’d be lying if I said there had not been bad days, but thankfully we have had more good days than bad days. Fleur has been incredibly resilient throughout. Despite the hair loss, which may make her look unwell, she has continued to thrive. She has gone through way too much already and shouldn’t have to be so brave and strong, but she is. And she’s faced it all with this magic and positivity that I can’t put into words. Fleur often speaks about her treatment, but not with negativity; she mentions her hospital visits and the side effects matter-of-factly. But, she never speaks of them negatively. Instead, her words reflect the positive impact the doctors and nurses have had on her, making her feel grown up and special. I'm incredibly grateful for that. Thankfully there are now signs of life returning to normality for her, and in October, she should be able to start school. Something she has dreamed these last few months. 

As a mother, hardest of it all, is not being able to take it away. And there are so many times I wished I could. My heart has ached when I couldn’t be the safe space that she needed in the hospital, whether it was holding her down for another port access, or trying to reassure her as she drifted off to sleep for yet another anaesthetic. I’m not sure I’ll ever get over that, I just desperately hope Fleur doesn’t remember it. I'm also not sure if the worry about the cancer coming back will always linger at the back of my mind. Unfortunately around 10 percent of children with leukaemia will have to fight their battle all over again. 

There are still moments from Fleur's treatment that unexpectedly resurface, causing tears to well in my eyes. Especially when I reflect on Fleur's diagnosis. I have an overwhelming sense of guilt. Guilt that I didn’t piece together her symptoms sooner, and that I still don't know exactly how long she had been living with these symptoms and the disease before her diagnosis. But also have a real sense of guilt that I naively thought my child could never get cancer, they were somehow immune to such a disease simply because they were so loved. 

But any child can get cancer. Nothing you do or say, not even love, can stop it. We truly hope that none of you reading this will ever have to experience a situation like Fleur's. However, sadly, statistics indicate that some of you may have another brush with childhood cancer. It could be a neighbor's child, a niece or nephew, or even an old friend's child. Regardless of how close or distant that connection may be, please know that Jackson and I are always here to offer support, share what we have learned, or simply be there to empathize with the intense emotions that come with such a journey.

In the meantime, thank you for showing your support for our event. By doing so, you’ll be helping other families like us navigate their child’s cancer journey, and you’ll also be directly contributing to the ongoing research into improving the treatment options and outcomes for other kiwi kids just like our Fleur.

From the bottom of our hearts, Thank you!