Olsen family 'deliriously happy' as daughter Jane beats cancer

Katoomba's Angus Olsen has drawn and written in simple terms about his daughter's cancer battle, so other infants around the world won't be so afraid.

Kindergartener Jane Olsen, now six, endured 54 weeks of chemotherapy treatment from 2016, as well as surgery and a dangerous eight-hour experimental procedure, in a battle to beat rhabdomyosarcoma or "rhabdo".

Rhabdo is a cancerous tumor that develops in the body's soft tissues, usually the muscles. It was a cancer her Dad said "tried to kill her many times".

Words like "central line" and "port" became common place in their family, as well as the nightmare of almost spending Christmas in a hospital bed. It became the subject for hopeful stories with cartoon drawings for infants that Mr Olsen drew to help those who might not understand their treatment. They are now being downloaded for free world-wide.

"I was living in hospital with my daughter and began drawing what it was like on my iPad (I write and draw everything on an iPad in-between customers at the cafe [Katoomba station's CafeXpresso])," Mr Olsen said.

"I started sharing it over Facebook. Other cancer dads encouraged me ... I drew their children, even some who had passed away. Drawing by drawing, my Facebook page @idrawchildhoodcancer grew until one afternoon I whipped up a short children's book called My NG Tube and it went all over the world. Dr Jen Kelly of The Grace Kelly Childhood Cancer Trust in the UK asked if I would be interested in collaborating on peer review work for child oncology clinics in the UK and we've worked together on a number of booklets."

Mr Olsen has written ten books in a "crazy year" with 1000 print books sold. But he believes with "social media engagements [on his free internet books], it would be nearing a million".

Volunteers have translated the books into French, Greek, Spanish, Dutch, German, Hungarian, Italian, Norwegian, Taiwanese Mandarin, Portuguese, Tagalog, Urdu, Arabic and Dhivehi - all free on his Facebook page.

Mr Olsen said because paediatric oncology is an immensely complicated and evolving field, he had struggled to find stories suitable for Jane.

"Unless you've been in the heat of it, it would be very difficult to represent how it feels for a child, let alone explain it."

Professional and parents, as well as charities, have welcomed the stories.

Mr Olsen said one mother whose infant son was refusing the traumatic experience of having a nasal feeding tube and was so distressed they were considering sedation, he said.

Ringing the remission bell in December 2017: Angus and Rachel Olsen with Jane and one of her doctors, Professor Stewart Kellie, from Westmead Childrens' Hospital.

Ringing the remission bell in December 2017: Angus and Rachel Olsen with Jane and one of her doctors, Professor Stewart Kellie, from Westmead Childrens' Hospital.

"Desperate she brought up my NG book on her phone and took him through the story. He settled and they got the tube down."

To make it accessible to poorer countries Mr Olsen has also started a second dedicated Spanish language page.

"I'm always thinking of new ways ... different formats to make it easier to get my work where it's needed and solve problems of cross infection, cost and communication in oncology clinics," he said.

He hopes to also write about the various scans, brain cancer, transplant procedures, as well as sibling grief and palliative care. Jane sees herself in all of it.

Fighter: Jane Olsen of Katoomba has come through her 18 month battle with cancer.

Fighter: Jane Olsen of Katoomba has come through her 18 month battle with cancer.

"Even though there's lots of different characters, she reads my books to herself in bed, they're very special to her.

"It's a privilege ... to contribute to these children's lives in a positive way. The same team that saved my daughter's life are now using my material, that was a powerful moment for me."

Those who would like to support costs for the running of the website can go to: https://www.gofundme.com/f/help-i-draw-childhood-cancer-build-a-website.