Taking back control after childhood cancer

When an X-ray showed Ash Bell had 12 crushed vertebrae, her doctors were confused. How could this happen to an 11-year-old who hadn’t been in an accident or suffered a serious fall? Further investigations found she had a blood cancer called acute lymphoblastic leukaemia (ALL) and this had caused osteoporosis. More than two decades later, Ash draws on her personal experiences of childhood leukaemia to help people of all ages navigate their blood cancer journey.

Ash was an active young girl who loved playing sport and camping with her family. When she began experiencing a sore back, she was treated by physiotherapists and chiropractors, and told it was ‘just growing pains’. But the pain got worse and eventually she couldn’t sleep or walk properly. An X-ray at the local hospital showed parts of her spine had deteriorated.

Ash had ALL. This made her bones brittle and weak. She had 12 crushed vertebrae and cracks in the bones of her fingers, toes and feet.

“There’s a particular memory that has been a core wound throughout my life,” says Ash.

It still feels sensitive to talk about it. But I’ve done so much therapy around it and feel I can confidently speak about it now.”

“I remember being in a lot of pain, lying in bed and not being able to move. There were so many people walking around me and at the end of the bed. I was there but wasn’t part of the conversation. Then I overheard the doctor tell Mum and Dad that I had cancer.

“That loss of control and not having the conversation directly to my face has caused a lot of issues for me and a fear of death,” Ash says.

I was watching that happen, seeing the impact on my family and thinking, ‘ Am I going to die?’ That was a really distinct moment in my life.

Ash was transferred to the cancer ward at the Royal Children’s Hospital, Melbourne and immediately began treatment for ALL and osteoporosis.

The next two-and-a-half years were spent receiving chemotherapy and healing her vertebrae. Like many patients with blood cancer, Ash experienced complications and infections, including pneumonia. She remembers being placed on oxygen a few times during this period.

Looking back now, I’m like, wow, I was probably really close to death at those points,” she says. “I remember seeing shapes, colours and lights, and this started my time of being so in love with the thought of angels and spirits.”

“I also remember my energy was focused on letting everyone else know I was okay during those times. I think I’d accepted where I was at, so I wasn’t scared.

Ash often felt detached, like everything was happening to her while she watched from a distance. Meanwhile, the constant hospital visits and painful therapies also caused high levels of anxiety and she would vomit every time she walked into the hospital elevator.

Hair loss, high school and not wanting to fail

Ash transitioned from primary to high school while navigating chemotherapy, hair loss and extra precautions to protect her immune system.

“It was really hard. I hated high school. I feel really upset even thinking about it,” she says. “It actually shocks me to think about how much school I missed. I remember having a tutor and doing some schooling at home … They were very understanding at school, but getting my report card for my first year of high school and failing most of my subjects, just because of attendance, felt awful.”

Her life experiences were very different from her peers. While other kids wrote about proudly kicking their first goal at football, Ash’s stories focused on learning to walk again after breaking her back.

“I remember having physio and how challenging it was trying to stand up and walk with someone on either side of me. And feeling proud of getting to the toilet again on my own … I had a back brace for a really long time and a lot of weakness.”

Ash finally finished treatment when she was 13 and was told to ‘go be a normal kid’. But she didn’t know what ‘normal’ felt like.

I still felt like a little girl. I loved playing with dolls and all those things. To go back to being normal was hard. I really struggled with that.

Don’t talk about ‘cancer’

Ash’s family were deeply impacted by her blood cancer diagnosis and treatment. Her parents were juggling her serious illness and ensuring she received all the support she needed, while also caring for her little brother and sister. Ash remembers her dad working a lot to keep the family afloat financially while her mum was there for most of her hospital appointments and treatments.

Once treatment was finished, her family shut down any conversation about the experience.

“My family had been in so much pain that we stopped talking about cancer. It wasn’t a word we used in our house anymore,” she recalls.

I don’t remember being part of any decision to not talk about it. It just was like, okay, treatment’s done, and cancer and leukaemia wasn’t spoken about again. We might have touched on, ‘Oh, when Ash was sick,’ but the word ‘cancer’ wasn’t thrown around.

Ash pushed down her feelings and tried to get on with life. Although she had many friends and other support, she struggled with anxiety and depression over the next few years.

Cancer had been the centre of her world. Now it was gone, she had to work out who she was. She focused on being normal but the trauma of going through cancer, along with the associated post-traumatic stress, continued to impact her life.

Ash was 21 years old when she visited a therapist and began her emotional healing journey.

I was almost having a breakdown and all this stuff was going on. She asked me, ‘How was your childhood, did anything happen?’ I said, ‘No, nothing happened. I’m fine. I had a good childhood.’ She kept prompting and then I said, ‘Oh, I had cancer, but that doesn’t impact me now’.”

“That’s when I started doing some healing work. While going to therapy I was able to start reflecting on my cancer journey and embracing that part of who I am.

Since then, Ash has sought support and guidance from counsellors, psychologists, healers and people who are more like spiritually inclined.

“Everything serves a purpose,” she says. “I’ve picked up gems of wisdom from all the different practitioners I’ve gone to see.”

Learn more about Leukaemia Foundation’s emotional support services.

Ash says it’s taken time to piece things together and understand just how significantly cancer has influenced her life.

“As a trauma, it is something that’s made me in all different ways – the good, the bad, the ugly, the magical. I want to acknowledge all of it,” she says.

Ash’s key message: support yourself tenderly

At 19, Ash received the all-clear from her doctors and boarded a plane almost immediately to head to the United Kingdom. She had been in remission for five years.

“It was my time to go on an adventure, have a change of scenery and gain some control of my life,” she says.

A year later, she returned to Australia and decided to study social work. She went on to complete a double degree with a Bachelor of Human Services and a Master of Social Work.

Completing her degree and becoming a social worker also helped Ash feel in control of her life again. After graduation, she worked in the aged care sector before joining the Leukaemia Foundation’s support team in late 2024.

Learn more about how the Leukaemia Foundation helps people with blood cancer.

Ash often draws on her own experiences to help people with blood cancer and their families, no matter how old they are.

“It’s very important for me to help people to feel heard and seen because that’s something I definitely needed myself,” she says.

When she was going through her cancer journey as a child, Ash says she just wanted to be hugged and told everything would be okay.

“Just knowing you’re safe and supported, that’s what a little girl needs to hear,” she says.

She also understands the experience of watching your child battle cancer can feel overwhelmingly heavy for parents as they find themselves carrying their own fears, as well as their child’s.

Ash believes it’s important for parents to pause and acknowledge their own needs whether they need a hug or just want to talk to someone and have them listen without offering solutions.

I’m a big advocate for self-care,” she says. “It’s really about those moments when you stop, pause and breathe, and cry if you need to cry, and fall apart if you need to. I think feeling all your feelings is really important rather than suppressing everything.”

“For a young person or an adult it’s almost the same: support your tender self and just be present. Those little moments of simplicity and comfort can make a huge difference to a really hardcore, scary journey.

There is no doubt Ash’s journey with blood cancer has been traumatic and painful. It has also made her the person she is today.

“One of my favourite sayings is, ‘no mud, no lotus’, coined by the Buddhist monk Thich Nhat Hanh,” she says.

“The lotus flower has to go through that dark murky uncertain time, through the mud, in order to bloom into a beautiful flower. So, whenever I’m in dark times, I just continuously say to myself, ‘No mud, no lotus’.”