Noelle and Scout: ‘It was just like a grenade went off in your life.’
“Nothing is normal, nothing is comforting, nothing is regular. Everything is irregular.”
The day started with the kids playing on the beach and ended with Noelle’s daughter, Scout, being diagnosed with Acute Lymphoblastic Leukemia (ALL). Suddenly, their family was thrown into an unknown world.
Scout was extremely well, extremely active and healthy. She just started showing a lot of bruising, which was not like her. So, on the way to picking up her brothers from school one afternoon, I dropped in to see our GP. He said, “I think you should go to the ER straight away.” I couldn’t pick up my boys, I had to take Scout right away to our local hospital.
As I was waiting for Scout’s blood test results, I could see the emergency doctor across the room. I saw her face fall as she was saying, “Are you sure?” And they were sure.
I left the house that afternoon, not knowing I wouldn’t be back. I didn’t come back to the house for two months.
It was just the worst news you can ever hear. I was in my school pickup clothes and I had nothing. I didn’t have any toiletries, I didn’t have a change of clothes. And I’d never spent a night away from my boys. We were in new world that we didn’t understand. We were just immersed in it instantly and because of the seriousness of the disease, everything happened quickly.
We had to put aside our old life. I was completely immersed in the hospital, and Scout. My husband was helping our two boys and trying to navigate his work. We didn’t know how gruelling having a child with cancer is but the whole family is impacted incredibly, financially, emotionally.
Scout was gregarious. She loved being around people and was just joyful and trusting. She lost a lot of that over that time, because of the painful things that we had to do, and there’s no choice around it. She obviously missed her brothers terribly and missed her dad terribly.
When I got my Redkite bag I hadn’t brushed my teeth in three days. I hadn’t washed my face, I hadn’t showered. The Redkite bag had everything in it. It had a teddy bear, it had a warm blanket. It had a coffee mug, and water bottles. It had all the toiletries, and things that you need in hospital. It was so practical, because I didn’t have anything.
I did not expect Scout to have leukemia. I really expected her to be fine and it was a blow when she wasn’t. And then, it was a blow again at the end of her intensive chemotherapy because the result wasn’t what we wanted.
One day Scout asked me, “Mom, am I going to get to hold a kitten some day?” My heart broke because I don’t know if she’s ever going to hold a kitten some day. We don’t know. Everything is uncertain. I organised to speak to Redkite’s support workers and I loved the way they talked to me. I had to explore my fears a little bit, and friends and family don’t always want to hear that. They let me explore the negative.
Nothing is normal, nothing is comforting, nothing is regular. Everything is irregular. My life is just on hold, and all that matters, is making her as happy as she can be, and making the experience as comfortable and as joyful for her as I can.
It’s been a year now and because Scout is immunosuppressed, our boys haven’t been to any birthday parties. We haven’t had any normal day-to-day life. It was a huge shift in our family life. It changed everything, and it still is changed. Scout’s whole treatment will take about three years. Her last day of treatment will be April 3rd, 2022. So, it’s a marathon. You have this idea at the beginning, that you will just get treatment, then she’ll be fine, and then we’ll go back to life as normal, but I can’t imagine that will ever be.
But if there was a silver lining to this experience, it is that there are people who are so generous, and so loving who have done so much for us. You see the best of humanity come to support the most vulnerable of humanity. And that’s a child in this case.
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