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Newcastle Herald Saturday 20/8/2011 Page: 12 Section: Weekender Region: Newcastle NSW Type: Regional Size: 920.67 sq.cms. Frequency: MTWTFS-

Brief: CURE KIDS Page 1 of 4

NOT AFRAID OF THE BIG, BAD C When her six-year-old daughter was diagnosed with cancer, teacher Alison Johns used a novel approach to demystify the difficult truth for other littlies. HELEN GREGORY writes. and Ralph Johns woke on July 17, 2006, knowing that by the end of the day their lives could be moving in a dramatically different direction. The appointment with the ear, nose and

Alison

throat surgeon confirmed their fears their six-year-old daughter Amelia had cancer. "She had never even had a serious illness before," Alison says. "But she wasn't frightened because she trusted us. We dealt with our emotions elsewhere to not stress her out." Six weeks before her diagnosis, Amelia had complained of a sore neck before going to sleep.

The glands on the right side of her neck seemed swollen and the family made an afterhours visitto a doctor, who prescribed antibiotics. The family GP later suggested an ultrasound, and the problem appeared to be an overactive gland. Then it started pushing on Amelia's tonsils. "The ENT [ear, nose and throat] surgeon took one look at it and said 'I don't like the look of that'," Alison says of their next appointment. "After the CT scan he said, 'Well, there goes your good options'. We asked if he was considering cancer and he said yes." Amelia had a fine needle biopsy. Alison busied herself cleaning the house, washing clothes and organising for her mother to mind the children. She says that she and her husband were ready for the diagnosisto be

"Calling my new boss was the first time I'd had to say the words 'Amelia has cancer'," Alison says. "It was so hard to say them out loud." Amelia was admitted two days after her diagnosis to Westmead Children's Hospital, where doctors found the neuroblastoma a malignant tumour that develops from nerve

tissue and often starts in the adrenal glands was confined to her neck and had not spread. Alison stayed at the hospital with her daughter for a chaotic fortnight of tests, and the beginning of chemotherapy. Her husband drove back to the family home in Wyoming on the Central Coast almost every day, to his job as a primary school teacher and

to look after the couple's other children, Patrick and Nathan, then seven and four. The family faced an organisational minefield asthey tried to maintain a semblance of normal life around Amelia'stest results and treatment, and their sons. "We knew they would feel secure and that life would still be OK if we maintained a routine for them," Alison says. "We made the best plans we could and just had to be flexible if they changed." Then came the matter of explaining cancer to the boys. The family did not know anyone who had cancer and Alison couldn't find an appropriate resource to help to explain the disease. "Being teachers, we knew if we didn't give

them information they would make up their

tumour to be malignant.

own explanations," she says. "We wanted to make sure they had a good scientific understanding so they didn't make

They had been a happy, healthy young family and Alison a high school maths and science teacher was due to start a new job. Now, it seemed, their lives were being put on hold.

up the wrong explanation. "I think knowledge stops a lot of the fear, and if they had an understanding of what was going to happen they wouldn't be so afraid." They used simple, matter-of-fact language to

cancer.

But, she says, they weren't ready for Amelia's

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Newcastle Herald Saturday 20/8/2011 Page: 12 Section: Weekender Region: Newcastle NSW Type: Regional Size: 920.67 sq.cms. Frequency: MTWTFS-

Brief: CURE KIDS Page 2 of 4

The book uses questions and illustrations to explain the complexities of cancer, radiation, chemotherapy and surgery in language suitable for primary school-aged children as well as adults. It refers to cancer as a "broken arm sickness" it's not contagious. Despite writing about Amelia's cancer, the medicine," Alison says. speed with which the family had to adjust to "We thought we may as well prepare them the demands of their new life meant Alison for the truth, because they were going to live didn't deal properly with her emotions until through the reality anyway." Alison thought her daughter's classmates at 12 months after Amelia's diagnosis. "The hardest time was nighttime, when the Valley View Public School could also benefit kids were in bed and you're allowed time to from understanding the changes they would think," she says. "You can't get away from it. see in their friend. But falling into a crumpled heap doesn't help She visited the classroom to answer anyone. When you have kids they're still going questions, explain Amelia's treatment had to get you up in the morning and the sun is still weakened her immune system and emphasised the importance of children staying going to come out every day." Amelia received chemotherapy at Westmead home from school if they were ill. every three weekssometimes for three days Buoyed by how her explanations had proven in a row for six months. helpful, she decided to condense them into a It shrank the tumour, but in February 2007 book, Amelia Has Cancer. surgery was unavoidable. "It kept my brain busy and I hoped it would Amelia's doctors say she is now cured, but her take away the nightmare in the first couple of journey towards health hasn't been without weeks for other families," she says. obstacle. "That was my main priority, to be helpful to Her tumour was wrapped around the nerve other families in a time of complete chaos. that controls the swallowing reflex and she "I look at it in terms of a very painful experience for our family and a book like this was unable to swallow not even her own saliva for 14 months following the operation. would have helped."

explain to Patrick and Nathan that chemotherapy targets fast-growing cells, and for that reason, Amelia would lose her hair. They were also honest about the fact that cancer could be fatal. "[We explained] that's why it's important to go to appointments, to make sure Amelia gets

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Newcastle Herald Saturday 20/8/2011 Page: 12 Section: Weekender Region: Newcastle NSW Type: Regional Size: 920.67 sq.cms. Frequency: MTWTFS-

Alison says. "She's kind and caring and she's alive. "The knowledge that we have survived as a family this difficult thing, we can

survive other difficult things again, even though we don't want the pain again. Who would?" Amelia has read her mother's book almost every night since it was published in January. And she's kept a

tally of how many times she has flippec through its pages. "I think she's proud of it. She can go

Brief: CURE KIDS Page 3 of 4

Cameron, two, and daughter Elise, 15 months is looking towards the future. Their faith has helped. "Amelia's the most gorgeous young lady and understands other people's suffering in a way that only comes through suffering yourself,"

"Amelia can read the book and say, 'Yes, I

have been through a lot, it's OK that I'm the way that I am becausE of what I've been

through'."

through the book other parents of children with cancer is similar to that given in Disney film Finding Nemo. "It's like what Nemo's father tells him when they are swimming into the black abyss," she says. "Just keep swimming, just keep swimming, just keep going. through'." "We tackle what we can, when we can, and Alison's advice to slow progress is better than no progress." She's proud of the book's inclusion in the Amelia was fed through a tube in her nose Cure Our Kids survival kits that are distributed and later from a tube inserted into her at Westmead Children's Hospital to parents of stomach. recently diagnosed children. She carried to school a machine to suck the "I know there's a need for it," Alison says. saliva out of her mouthand later a bottle to spit into until she started swallowing in April "I know their pain and I hope it can relieve some of their pain." 2008 and say, 'Yes, I have

been through a lot, it's OK that I'm the way that I am because of what I've been

Amelia still has some pain in her jaw vvhen she eats, her pupils often dilate differently and she cannot sweat on the right side of her face. There may also be some long-term effects

from the chemotherapy, but for now the family which has since grown to include son

Amelia Has Cancer is $19.95 and availabh from cureourkids.com.au. Proceeds go tc

supporting families dealing with cancel

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Newcastle Herald Brief: CURE KIDS Page 4 of 4

Saturday 20/8/2011 Page: 12 Section: Weekender Region: Newcastle NSW Type: Regional Size: 920.67 sq.cms. Frequency: MTWTFS-

PROGRESS: A recovering Amelia

below with mother Alison and with her family, opposite. PICTURES: NATALIE GRONO

,mati.:7.--Mermotoo "

\NIKO 4CJI, 4.110

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Not Afraid of the Big, Bad C  

Alison Johns along with her family, were recently featured in The Newcastle Herald on 20th August 2011. The interview was based on Alison’s...

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