Christmas is a time to celebrate with family, and every year I am grateful for how I get to share it with mine. My son Marley was diagnosed with acute lymphoblastic leukaemia when he was just 15 months old, and I haven’t always been sure he would be here celebrating it with us.
A decade has passed since Marley’s diagnosis and, even though he is now considered cancer-free, the years of gruelling treatments have left him with lifelong issues. Issues that have taken a toll on our small family. I remember his diagnosis like it was yesterday. Marley was so pale that he was almost translucent, his lymph nodes were swollen in places I didn’t even know existed. He had persistent fevers, lethargy, and unbearable pain through his hips. Then he stopped walking altogether.
I was worried, but not so worried that I thought Marley had a life-threatening condition. He had been sick for about four weeks. The doctors all said it was a virus but he got worse, so I made the decision to take him to the Fremantle Hospital Emergency Department. The paediatrician on call gave Marley the once over and booked us in overnight for testing. I didn’t sleep at all that night. The next morning they told me I needed to go to the children’s hospital because they were ruling out cancer. I only heard “ruling out”.
In Australia, an average of 750 children are diagnosed with cancer every year. By making a donation towards CLCRF, you can help ensure future generations can live cancer-free.
I couldn’t drive, as Marley was too frail, so we had to go in an ambulance. It was the only time I’ve been in an ambulance, and I couldn’t even hold him. They strapped him onto the bed, and I sat in the back with him and the paramedic while he asked me questions the entire way. When we got to the hospital, we were taken to the ward and an oncologist asked me if I knew why I was there. I said I thought they were ruling things out. I was very bluntly told that Marley had cancer and they were just ruling out which kind. I collapsed.
It honestly felt like the room had the air sucked out. It was like when you’re winded. You try to breathe, but you can’t. You just gasp and get nothing. It was the most distressing and traumatic thing I have ever experienced.
Too many families are facing the harsh reality of childhood cancer. Your support is vital in making sure these children survive and go on to live the lives they deserve.
I was led to a bright room where I was told I could phone someone. I called my mum, and I’m sure she couldn’t understand anything other than where I was because I was hysterical. The weeks blur after this. New chemo here, sign this there, appointments, admissions, surgeries. That first part of treatment is really intense. Trying to juggle this and two other children as a single mother was really difficult. It became so hard that I asked my ex-husband if his daughter, who I had been looking after, could go and live with him. I still feel so awful about this.
Cancer not only destroys the child who has it, but the entire family suffers. By donating to CLCRF this Christmas, you can help ensure fewer families have to endure the struggle.
Marley began to suffer from blood sugar issues during treatment, meaning that anytime he fasted his sugars would drop dangerously low and incredibly quickly. If he woke up tired or sweaty or nauseous, I knew he needed something to eat as soon as possible. He passed out more than once while waiting for a lumbar puncture. There was also a time where they couldn’t wake him coming out of anaesthetic. All of this builds your trauma bank.
Marley finished treatment early, and we thought he was relapsing. Relapse is in the back of every cancer parent’s mind. His body wasn’t recovering the way it was supposed to; his counts weren’t bouncing back. And still, here we are. Lucky enough for my memories to be only of a possible relapse. Other families have not been so fortunate.
You can help make sure families don’t have to rely on luck for their child’s survival by helping fund our research into better treatments.
Marley’s treatment protocol meant five years of follow up. It’s a widespread perception that once the hair grows back “everything’s fine!” It isn’t. Marley has been left with ongoing lung issues and has had some issues around his heart. He also has a neurocognitive impairment that they want to sort out before he starts High School next year. He worries because people call him stupid, but he’s not. He worries because adults say he’s naughty, but he’s not. That’s a lot of worry for an 11-year-old. In addition to the risks to their physical health, many survivors can experience depression and anxiety, with some also meeting the criteria for post-traumatic stress disorder. It is certainly not over when the hair grows back.
Your tax-deductible donation will help researchers find better treatments that don’t leave children with long-lasting adverse side effects like Marley.
Cancer treatment is gruelling. Children become immunosuppressed, and you’re told what you should do to protect them from catching things that might take their lives instead of cancer. This has been a constant concern of mine, especially during the COVID-19 pandemic. I had a plan to put Marley in a bubble at the start of the pandemic to protect him, although, before I could, he came into contact with a person who had a positive case of COVID-19 at their workplace. I was petrified. Marley has a complete inability to fight anything. If I get a cold, he gets a lung infection. Taking a bar of soap to school every day because he knows soap is better than hand sanitiser, what boy knows those things?
Marley is always washing his hands, and he knows that if he catches something, it could be really bad for him. Marley’s best friend at the hospital during treatment passed away from a cold in 2012 when he was just 3 years old. He still talks about him and, at school, he would tell kids to cover their nose and mouth when they sneeze because that’s how his friend died.
Survivors shouldn’t have to live with the constant fear of getting sick. You can help researchers discover kinder treatments by making a tax-deductible donation today.
As a result of seeing his little brother battling this disease, Morris is now risk-averse. He’s very insular and he won’t try new things in case he gets hurt. Morris is the complete opposite of what he was when he was little, and it’s affected him in ways he hasn’t verbalised yet.
Cancer is confronting, whether you’re a child or an adult, but I can’t just sit there and feel terrible all the time. I don’t think that being afraid and being courageous are mutually exclusive – you can be both at the same time. When Marley finished treatment, we made a thank you card for everybody at the hospital, and there’s a quote we put on there – “in the darkest moments, the pieces of hope are the light.” If I could be somebody else’s light, while they’re in the dark, then I’ve done my job.
Research is vital if children are to have long, healthy, and fulfilling lives. This research can only continue with your generous support.
No kid should be left with lifelong issues. It should be that, when treatment is over, it ends. There should be none of the family trauma. None of the continual “is he going to be alright?” None of the waking up every morning thinking “what’s going to happen next?”
We need to continue funding the incredible scientists that are doing the research now so that they can find better treatments, and families like mine no longer have to deal with the daily mess and grind that is post-treatment.
Research has given our family the gift of survivorship, something I am incredibly grateful for. It would be a crime to waste this opportunity to help raise awareness and funds for CLCRF, an organisation I have been actively involved in since Marley’s diagnosis.
As CLCRF does not receive State or Federal funding, it relies on the compassion and generosity of people like you to ensure the ground-breaking research can continue. If you can, please consider making a donation today.
P.S. Time is running out for these children. Your gift, now, will mean that more children are saved from cancer and can live better lives. This is not possible without your help.