James was loving the lead up to Christmas. He was on holiday overseas visiting his grandparents and enjoying the Christmas markets. There was so much for a three-year old to look forward to. But mum Marja was worried. Strange bruises, fevers and a swollen neck were not clearing up with antibiotics. A paediatrician recommended tests, and James was diagnosed with Acute Lymphoblastic Leukaemia (ALL). There was little time to absorb the news and farewell friends and family before rushing back to dad, Donovan, in Australia, and straight into hospital. A relentless treatment plan began. Lumbar punctures, bone marrow biopsies, chemotherapy and strong doses of steroids.
"As soon as he opened his eyes, it was injection time and as soon as he'd go to bed, it was injection time again."
James became terrified of needles and hated staying at the hospital. He just wanted to go home. Steroids drastically affected his behaviour. The once easy going little boy became aggressive. His face puffed up from the drugs. There were weeks where he just sat despondent in bed. He partially lost the ability to walk, and all interest in seeing his friends. Having only recently moved to Australia, this traumatic time came hard for Marja and Donovan, without the support of friends and family.
Then they met Kylie, the Camp Quality funded Child Life Therapist at the Sydney Children’s Hospital, and the much-loved Camp Quality puppets.
“Right from the beginning Kylie came and did her magic, just comforting James with all the explanations in layman’s terms. And then the puppets…it’s awful to be strapped to a bed. The puppets really made a difference for us.”
Before diagnosis, James had been excited about going on a camping trip. All the gear was bought, and it was all he would talk about. He was so disappointed to be too sick to go. As his health improved, Camp Quality invited James to Mini Camp – a day away with kids his age. Marja and Donovan got a precious four-hour break and a completely new child returned from his first camp.
“He didn’t even run back into my arms when we got there; he was so happy with his volunteer. And he’s made friends and you could just see from his face that he’d had such a good time just feeling like a normal kid.”
Next was James' first Day Camp. This is where James met another child impacted by cancer, who he called 'Butterfly Girl' because of her dress-up wings.
“We still speak of Butterfly Girl. She painted him a little picture and it’s his favourite…it’s the one that’s highest on his wall, right in sight where he can see it as soon as he wakes up.”
Now that James is out of hospital, Marja and Donovan find it’s the Camp Quality families they have met on Family Fun Days and Camps that have been the greatest support.
“It’s really nice to meet people that understand what you’ve gone through. You’re still on guard about everything. We get strange looks because we wash our hands all the time. And if someone sneezes or coughs, we run. And then you hear that other people do exactly the same and it just makes the new normal feel more normal.”
James and his family won’t be navigating the new normal alone now they have a community around them. James’ next camp will give him opportunities to build up his muscles again; wall climbing, swimming and kayaking - with medical vollies on hand to keep him safe and friends just like him.
“Camp is all he’s talking about; that’s literally the first thing he speaks about when he wakes up and the last thing he speaks about when he goes to sleep.”
At last, James has so much to look forward to again.
Your donation this Christmas can help kids like James and 'Butterfly Girl' experience the Kid-ness on Camps that will help them through the daily ups and downs of cancer.