Marley
Childhood cancer is something that Jackie never thought she would have to deal with, but even years after her daughter Marley has gone into remission the threat of relapse is a daily fear.
Marley is one of the faces of the 2021 Jeans for Genes campaign which raises funds for the vital work being done in the labs at Children’s Medical Research Institute. The ongoing pandemic over the past year has shown the critical importance of research and its ability to change the world. Imagine what would be possible for the 1 in 20 kids facing a birth defect or genetic disease - if we all invested in research.
When it comes to babies, Jackie describes Marley as easy. She was happy and healthy just like her big sister. Then a few months before her first birthday, Marley became very sleepy – which was unusual for this bright and bubbly baby.
“I was asleep in bed and she was in her cot and she started to cry,’’ Jackie said. “And when she was crying, I saw she needed a nappy change, and her nappy was full of blood. So, from there, we went straight up to the hospital, and from there we were transferred to Westmead. And then, about five days later, she was diagnosed with a germ cell tumour.’’
Germ cell tumours can be benign or cancerous – Marley’s turned out to be cancerous, but was in a difficult area to remove with surgery. She immediately had to start chemotherapy treatment that would last for eight months.
“We just felt broken, really,’’ Jackie said. “I haven't been around childhood cancer. We just took one day at a time, but we were broken.
“She was nine months old, attached to a machine because she kept getting so many infections. She was stuck in a hospital cot for 23 hours a day. We were allowed to go out for one hour a day for a little walk if she wasn't too sick. It was really hard. To be honest, I don’t know how we did it.’’
After eight months they rang the bell to symbolise the end of treatment and two weeks later they got the incredible news that she was cancer free. Jackie said many people would think that was the end of it, but childhood cancer has many long-term impacts.
“Life after remission is really hard, because you're constantly assessing any situation,’’ Jackie said. “They might get a flu or a cold or a temperature and instead of just thinking, ‘oh, it's nothing’, it's hard to switch your mind off. Plus, when they're retesting, you've got to prepare yourself that life could be totally changed in a moment again. It's really hard after treatment.’’
Marley’s family have become involved in Jeans for Genes because they now realise how common genetic disease is, impacting 1 in 20 children.
“Investing in research is super important,’’ Jackie said. “If you go to any hospital with children, you will open your heart because it is so hard to sit in there and watching everybody broken. And you know, really, you're just praying that the treatments that they're using on your child – which have been developed from research – will work. Otherwise, that they won't be here.’’