Fleur Willison, 4, from Hamilton, was recently diagnosed with leukaemia. Her mother Isobel has shared with the Herald what it's like for the family.
Isobel Willison, a vet from Hamilton, shares the story of her 4-year-old daughter Fleur’s battle with leukaemia, and the ripple effect on the rest of the family.
Child cancer comes out of nowhere. It feels like a freak wave that comes barrelling in and rips your life apart, whilst you cling desperately to remnants of life’s normality before it gets washed away. We are still reeling from a wave that hit us a little over two months ago. My 4-year-old daughter, Fleur was diagnosed with cancer, acute lymphoblastic leukaemia B cell. I still shudder at the sound of it and can’t bring myself to say out loud “my daughter has cancer”. Saying she has leukaemia somehow sounds mildly better.
I never expected this news to happen to us. It was always sad, heartbreaking stories of others that we heard, but couldn’t picture ourselves in it, and never thought I’d have to.
But then in an instant, I became the mum we heard in those stories, holding her daughter through a series of terrifying procedures. And like the children from those same sad stories, Fleur became the one having her chest X-rayed, being hooked up to monitors and being held down as doctors tried to get an IV line and begin blood transfusions.
I pinched myself, just to check if this was actually happening, as we were in an ambulance on our way to Starship. Then again as we were wheeled through the hospital doors and into our room on the ward. But it soon became very real, as I held on to Fleur as her body relaxed into her first general anaesthetic, which left me out of breath and sobbing in the hospital corridors.
Just when I thought I might finally be able to stop crying, chemotherapy began. The first dose of chemo hit hard. Up until this point as a mother, I’d dutifully tried to prevent my children being exposed to toxins, only to have them pumped directly into Fleur’s bloodstream. It still stings, even today as I watch more chemo drip into her little body, the tears flood my eyes.
Being told your child has cancer is hard, real hard. The ‘can’t breathe, might throw up, can’t eat, heart aching’ kind of hard. The hard that I was certain would break me apart, yet I would wake up whole and wonder how it would be possible to hold it together and do it all again that day. But perhaps the hardest part of going through all of this as a parent is not being able to take it away. And there are so many times you wish you could. When you hold back their hair as they vomit, as they cry to you about the weird tingling feeling inside their bodies, when you hold them down for more pokes and plaster changes, while you try to reassure them as they drift off to sleep for yet another anaesthetic.
It gave me such a pit in my stomach realising that chemotherapy would take Fleur’s hair. I’ve prepared myself for weeks, hoping we would be one of the lucky ones. It’s so trivial in the scheme of things, but is still such a hard part to grasp, and I so desperately wish it could be me not her.
Leukaemia is a blood cancer, so if there’s just one cell left over, it comes back. Treatment is designed to wipe everything out, not just the leukaemia cells. Since diagnosis, we’ve found ourselves on the 7th floor of Starship, the paediatric oncology ward, every seven-10 days. This will continue for around nine months. Fleur receives a cocktail of toxic drugs - so toxic in fact that everyone else even just handling them must wear full PPE. The chemotherapy includes daily oral chemo, IV chemo, intrathecal chemo (via a spinal tap) and also the addition of steroids that leave her weak, swollen and restless. The treatment is gruelling emotionally and physically, but generally successful with most children with B-ALL going into remission just 28 days after diagnosis. Even so, the standard treatment must continue for years to maintain these outcomes.
But it’s not just the chemotherapy that knocks leukaemia kids around. With no immune system, a temperature for a child with cancer is a medical emergency and the child must reach an emergency department within the hour. It can change so quickly and without the typical signs of a sick kid. One minute your child seems fine, and the next minute you could be getting admitted through ED. To do our best to avoid this, we live from blood test to blood test, which reports a neutrophil count, providing some indication of Fleur’s functioning immune system and almost by direct correlation, our level of isolation for the next week. We’ve learnt to slow down, make fewer plans and that life is on hold for a bit.
We are now a couple of months into this journey, and as I think of the long road ahead, I cannot help but feel a weird sense of dread - wondering what life at the end of treatment looks like, wondering if it will come back, and will I live with this worry for the rest of my life. About 10 per cent of children with B-ALL will have to fight their battle all over again. Nevertheless, I know there are many who have it worse out there, kids fighting hard battles, hard side effects, and some with not great outcomes.
Through all of this, I’ve been completely awed by how resilient children can be. Things that can completely devastate an adult, children can see as mere bumps in the road and move on. I’ve fretted over the idea that Fleur was going to miss out on so much, but she continues to thrive without skipping a beat. I’m so very proud of her, she has gone through way too much already and shouldn’t have to be so brave and strong, but she is. And there’s an inexplicable magic in the way she handles it all.
Equally Fleur’s older brother, Greyson, has had his world rocked and has had to live in the shadow of cancer for the past couple of months. I’ve felt heavy with guilt, for the sacrifices he has made, for the imbalance of my time, and for the times my tears were too hard to fake. Amidst it all, Greyson has remained refreshingly candid, helping to put a smile back on our faces when it has felt too much to take. He has taken on an unthinkable role, I’m full of pride for the way he loves and looks after his little sister.
Cancer has been a teacher - teaching me some invaluable things too. It has taught me what matters, and I have perspective I otherwise never would have had. We are very fortunate to have access to world-class cancer care, with an exceptional team of doctors and nurses. I feel very privileged to be able to keep our daughter safe at home and be able to take time off work to get her through this. I’m incredibly grateful for our amazing family and friends that have wrapped their arms around us. I’m especially thankful for my husband, Jackson, without faltering he has been our hero in the background. I’m becoming a better person, friend and especially mother because of this - but I still hate what it has taken me to get to here.
I wrote this without the intention of sharing. Just to heal my hurt. But I would like to offer something to a parent grappling with the initial stage of diagnosis. I hope that by reading this you find comfort, in some very small part, knowing that I am walking this rough road with you. Although it seems unfathomable at the moment, I want you to know it does get slightly easier. Along the road, I hope you know you will have support. Many times, from people and places that you don’t expect. I hope you will find love and kindness in that support, that gives you strength, even on days when you feel completely empty.
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