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Addy's story

Addy (4) had never spent a day away from her big brothers Ethan (11) and Bailey (6). She was the little sister who ruled the roost and they doted on her. When the boys were at school she was with mum, Kristen, at the beach or river near their home.

A couple of months before her third birthday Addy began saying her legs were sore. Then one morning she woke up in terrible pain.

“She woke up crying the worst cry you could hear,” Kristen says. “She couldn’t get out of bed. She couldn’t walk.”

Blood tests showed something was wrong. Addy was rushed to Nowra hospital. Kristen was told to just pack for a couple of nights. They didn’t see their house again for six and a half months.

Dad, James stayed home with the boys while Kristen and Addy entered the confusing and frightening world of the oncology ward. Over those first few days Addy endured ultrasounds, blood tests, X rays, a PET scan, CT scans and an MIBG scan. She needed to be held down for each procedure. By this point Addy was so scared of doctors and nurses that she screamed as soon as they came near her. Although the tests weren’t finalised her doctors were becoming so confident Addy had the rare paediatric cancer, Neuroblastoma, they wanted a central line inserted right away.

Camp Quality funded Child Life Therapist, Kylie walked into Addy’s room with an arm load of art and craft activities the day before Addy was due to get her central line.

“Addison was just so unhappy,” Kristen says. “She was lying in bed and as soon as Kylie brought all this stuff in she had just got the biggest grin on her face. She sat up in bed for the first time and started doing art and craft. We soon had art and craft all over her room.”

Using a puppet, Kylie showed Addy how her central line would be inserted, which also helped Kristen and James understand the procedure. It meant that when Addy came out of the anaesthetic with the central line attached she wasn’t afraid. ‘Just like that doll the lady showed me,’ she told Kristen.

Addy was diagnosed with Stage 4 Neuroblastoma and started chemotherapy. Kylie continued to use Child Life Therapy to help Addy not just cope, but thrive during her days in hospital, by using cooking activities, iPad games, Play Doh, Lego and art. But the biggest test of how Child Life Therapy could help Addy was still to come.

Addy needed to undergo fifteen days of radiation in a row, which meant lying still in the machine in a room alone for fifteen minutes every day. Any movement could affect healthy tissue. The doctor said the only way to do this was under general anaesthetic. Addy hated anaesthetic due to the horrible delirium it gave her on waking up. It also meant a nasal tube for feeding, longer recovery time and health risks.

Kylie suggested they avoid this daily anaesthetic by using Child Life Therapy.

“So Kylie gave us all these different ideas and resources of how we could practice getting ready for radio,” Kristen says.

YouTube videos, books and visiting the radiation room all helped Addy understand what would happen. She practiced keeping still for the length of her favourite song and got used to lying on hard surfaces. Under Kylie’s guidance Kristen helped her start slow and build up to longer periods of time.

Radiation treatment began. Every day Kylie was there and Addy ran down to the radiation room to put a sticker on the poster they had made together, threaded a Beads of Courage bead onto her necklace and got into the machine without any fear. Kylie played music and talked to Addy through a microphone during the treatment, explaining exactly what was happening.

“For the first few days they had an anaesthetist there ready in case she couldn’t do it,” Kristen says. “After a couple of days Kylie’s like, ‘There’s no point wasting the anaesthetist’s time because she’s not going to need it.’”

Addison became the youngest child at the hospital to complete radiation without a general anaesthetic.

“I honestly don’t think we could have done it without Kylie’s help”, Kristen says. “Kylie has made the biggest difference. She made the really scary time less scary and the sad times much happier.”

Camp Quality is one of the major funders of Child Life Therapists in Australia. Every hour with a Child Life Therapist delivers invaluable, lasting benefits for children. With your support, we hope to transform every child’s cancer experience.

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