Embryonic rhabdomyosarcoma. Such a big word for such a little girl. Jane was two years old when she was diagnosed with this aggressive highly malignant form of cancer that develops from skeletal muscle cells that have failed to fully differentiate.
Her dad spent many dark months living in hospital, albeit on and off, while she underwent scans, surgeries and seemingly endless rounds of chemotherapy.
On a daily, if not hourly basis at her bedside, Angus Olsen, a Blue Mountains NSW barista by day and an illustrator in his spare time, bore witness to the medical intervention that would save her life – horrified by its brutality and feeling very much alone in circumstances more often endured by mothers.
How could he put into words and explain to his little girl why a tube was being put into her nose? Was it normal for a toddler’s delicate cheek skin to literally wear away after hundreds of sticky dressing changes?
As his daughter wavered between life and death Angus picked up is iPad deriving small comfort from drawing what he couldn’t put into words.
“The calendar of events and incidents is unimaginably hard to lay out in ways people can understand let alone the trauma of recalling it,” he said. “Lots of things about dealing with childhood cancer just don’t have English words.”
Little did he know that those sketches would light the way for so many others. His latest project is a picture book about nasogastric tubes or NG if you are regrettably in the know.
"I originally drew it for cancer kids between two and five years old,” said Angus. “But it has a bigger audience now as cancer families also use it to show siblings, friends and family members to explain why the NG tube is important in a quick simple way.”
A page from NG Tubes for Kids, a ten page picture book by Angus Olsen.
We spoke to Angus and learned what’s so special about his drawings, life as a cancer dad and why funding research to find better treatments and a cure is a love letter to children everywhere.
How old were you when you started drawing?
I’ve always drawn as far back as I can remember, my first published work was a comic strip I did at the age of 11. I had very supportive art teachers in high school. I went on to study fine art at TAFE but half way through my diploma, I was offered a traineeship with Walt Disney Animation Australia and worked for them about eight months.
Since then I’ve drawn comics and illustrated various things; it has always been fairly sporadic though - nothing consistent - which is why I make coffee for a living.
Do you only use a tablet computer to illustrate?
Yes, I have very little room in my café kiosk and can’t afford a dedicated studio so I’ve trained myself to do everything on an iPad. It also saves time as I can create and upload to social media very quickly with it.
It can take anything from an hour to days depending on the complexity and how much something needs refining to get it to a stage I am happy with.
Would you ever change careers?
I’m not sure, I very much enjoy making coffee. I get to meet and talk with tourists from all over the world who visit my hometown, Katoomba. If it happens, it happens, otherwise I am quite happy making coffee for people.
Cafe Xpresso in Katoomba, NSW. You'll find Angus and excellent coffee here at the top of the stairs outside the railway station.
About drawing childhood cancer
How did you decide on NG tubes as a topic for your first childhood cancer storybook?
NG tubes are a huge part of childhood cancer but I never found resources about them for really young kids.
I saw a need and I found a way for my pen to help that need in a small way, I couldn’t ignore it. I just thought, “What would have been good to give Jane when she was having cancer treatment?”
Did you consult with any medical professionals to write it?
The first edition I created from my own knowledge and experience having dealt with my daughter’s NG tube. Then, Dr Jennifer Kelly of the Grace Kelly Ladybird Trust, which creates resources for cancer kids in the UK, contacted me. Together we adapted it into a cleaner work for distribution. She is very good at what she does.
I also have no shortage of nurses supporting me now despite how busy they are, plus the oncologists at The Children’s Hospital at Westmead are excited about my work.
You’ve decided to dedicate yourself (between customers at the café) to creating more books… what are the next topics going to be?
I’ve just finished a children’s book for a little boy in the US who lost his eye to bilateral retinoblastoma. I’m hoping it’ll be helpful to kids adjusting to a prosthetic eye. After that, I have plans for a story about being stuck in hospital on Christmas Day.
A page from My Prosthetic Eye, an eight page picture book written for Parker by Angus Olsen.
About the ‘cancer dad’ community
You found a great deal of support in online groups run by other cancer dads, tell us about that.
Childhood cancer is intense; there is no time for face-to-face counselling or group sessions aside from the wonderful work of social workers and chaplains on the front line of care.
I was already using social media to keep track of everything and informing family and friends of Jane’s progress. Feeling the waters for what was out there on social media for dads like me just happened naturally from that. However, it’s important to note for some, interacting with other cancer families through social media may not always be healthy; you can expose yourself to some really awful stuff at a time when it might not be helpful for your mental health to do so.
“Dads **** Rabdo Crew” was the main page I interacted with, it’s a closed page and as the missing word suggests, it isn’t for the faint of heart. If you don’t live in this rare horror - you aren’t getting in.
For me, venting with other fathers who understood my child’s specific cancer, finding parallel symptoms and not feeling alone in it all was very helpful.
Cancer dads are a salty bunch of dudes with very dark humour, steel stomachs, are perpetually tired and have the biggest hearts I’ve ever known. I count these guys as dear friends now despite having never met them in person.
All that said, I am still likely to need professional help in future, so I’d never suggest social media over professional mental help but I’m very grateful for the support it did give me.
About drawing childhood cancer
How have the cancer dads responded to your drawings?
It always shocks me and catches me off guard, they respond like I have given them something of immense worth.
When you try to explain to people what it’s like there’s just too much, dragging your child through cancer treatment is an enormous undertaking. Some of my work only childhood cancer families fully understand.
How do you feel your drawings are helping others?
In lots of different ways. People from all over the world see their importance differently.
I feel the people who follow my work from outside childhood cancer are brave to expose themselves to it. My artwork is not an easy thing to see on your newsfeed all the time, but for people in the cancer world it resonates.
People in poorer countries see value in free resources they don’t have to spend money on to print or share.
Some would ask me to draw a picture of their child to see what they would look like free of cancer - it helped with their grief. But I no longer do these for the sake of my own mental health.
Some like that their children think there is something just for them - you can get away with that as so many lose their hair and they end up looking similar.
Some feel they are helpful for raising awareness of their situation and share it saying, “This here! This is what it is like!”
Some people value the representation of their grief losing a child to cancer.
Some just want to know they aren’t alone, that someone out there understands.
The control centre of creativity. Angus draws on his iPad between customers in his tiny kiosk.
How does Jane respond?
Jane thinks everything I draw is about her; she is still a bit young to understand what happened. She was sick and now she isn’t is about how far she goes with it. She’s going to school now.
However, she will have regular scans under anaesthetic for years to come making sure she continues to remain in remission.
These are extremely cruel on her and she sees it all as unfair now she’s “all better”. And it is unfair. Nothing is fair about childhood cancer.
Would you say she’s your biggest fan?
Yes, along with my older daughter Holly, they both think I’m famous for some reason!
If your drawings could convey one message about childhood cancer, what would that be?
To childhood cancer families, “you aren’t alone”. To everyone else, “childhood cancer is enormously complex and individual requiring enormously complex and individual solutions”.
About childhood cancer and you
Is there anything you have learnt from your own experience that you would like to share with families that are in a similar situation?
Everyone’s cancer and situation is different. It was helpful for me to focus on the job in front of me. One thing at a time, one day at a time. Seeing and understanding your child’s therapy schedule for the first time can be very disheartening. I learned to wake up and think, “What’s the first job? Wake her up unhook her and flush her NG. OK what’s next?” One thing after another, one step at a time. And that’s how we lived.
What’s it like to be labelled a ‘cancer dad’?
I’m proud to be a cancer dad.
I had an enormous army of support behind me but there was a lot on me that only I could do and be as a father, and I’m proud to have achieved it.
Seeing my daughter into remission was the hardest and most important thing I’ve ever achieved and I’d say will ever achieve in my lifetime.
How has your daughter’s cancer journey affected you?
I’m sure in more ways than I’m aware of. One thing I can think of before cancer, I was fairly open minded. Since cancer, since immunocompromisation, since being immersed in the efforts of medical science to end childhood cancer I now have zero patience for pseudo-therapies, so-called cancer cures and anti-vaccination. I don’t have the luxury of thinking otherwise anymore. These things are extremely cruel on cancer families; they give false hope, prey on the vulnerable and add dead weight to the already enormous undertaking of trying to save a child from cancer.
What are your hopes for the future; for Jane, your family?
To just be a family. We are very fortunate. Some don’t have much of a family left after the pressures of childhood cancer.
How does it feel to know that thousands of Australians are donating to fund childhood cancer research so that kids like Jane can have kinder, more effective treatments, and ultimately a cure?
It makes me proud to be Australian; health has been a matter of national pride for some time and no less than in childhood cancer research. We understand investing in medical research is a love letter to our children’s children and beyond.
I never intended to make any money from what I do, but cancer families wanted clothing with my designs on them and ultimately that meant I would receive some money. To properly honour those funds I needed to choose an international cause to support because that’s where my followers come from, all over the world.
The Kids’ Cancer Project helps fund childhood cancer research projects I have no doubt will come to fruition in my lifetime. Research that isn’t just for Australian kids, it’s for kids everywhere.
Donate to research and help find more effective treatments for kids with cancer.