Children's Cancer Institute

Everyone thinks you just finish and that's it, you go back to your normal life

- Maggie

Just over 10 years from her diagnosis, cancer survivor Maggie is sharing her story to raise awareness — not only of the experience of cancer in childhood, but just as importantly, its ongoing impact into adulthood.

Pre-diagnosis

Growing up on Queensland’s Sunshine Coast with two brothers, Maggie was an extremely active 11-year-old, heavily involved in competitive swimming, dance classes and netball. A whirlwind of energy, she packed every week with rehearsals, training sessions and competitions.

“I couldn’t keep still,” Maggie says. “I was always bouncing around, doing something.”
But her world was about to be upended in ways she couldn’t even imagine.

Symptoms

During a routine eye check, Maggie’s optometrist noticed that one of her pupils was consistently more dilated than the other. This led to a visit to an ophthalmologist, but the results of further testing were inconclusive, and the consensus was that it was nothing to worry about.

“Over the course of a year I developed persistent headaches which became more severe and more frequent. My mum, Shirley, took me to several doctors and paediatrician over many months who brushed my symptoms off as migraines and that there was nothing to be worried about. I had my 11th birthday in early April in 2011 and at this stage my symptoms were getting out of hand. I was vomiting multiple times a day and in my sleep, headaches from the moment I woke, and I began having distorted vision. During this time I wasn’t able to attend school. “

The turning point came when Shirley demanded her daughter be given an MRI. The results revealed that Maggie had a brain tumour.

“I remember sitting in the doctor’s office, and my mum and grandmother were crying,” Maggie says. “All I could think about was a school friend, Madeleine, who had passed away from a brain tumour just over a year earlier. I was terrified.”

Diagnosis

Maggie was diagnosed with Grade 3 ependymoma, a rare and aggressive brain cancer, along with a benign (non-cancerous) ganglioglioma. Within hours of the diagnosis, Maggie and her mother were on their way to the Royal Children’s Hospital (now Queensland Children’s Hospital), where they would receive specialised care. As the hospital was 2 hours from home, Maggie’s grandparents had to look after her brothers while Maggie and Shirley were in hospital.

Maggie’s oncologist had a familiar name—he had been the treating doctor for her friend Maddie. “It was comforting to have him explain the differences between Maddie’s case and mine,” Maggie recalls. “He reassured me that there were treatment options available.”

Treatment

Maggie joined a clinical trial with a rigorous treatment regimen. After having surgery to relieve the pressure in her brain and obtain a biopsy of her tumours, two more brain surgeries followed to resect the tumours. However, while the benign ganglioglioma was successfully removed, attempts to fully resect the ependymoma proved challenging.

“They decided to use two rounds of intense chemotherapy to help shrink the tumour,” explains Maggie. “So I had a port-a-cath put in [a device placed under the skin on the upper chest]. It was actually one of the most painful surgeries I'd had.”

“There were no free beds in the oncology ward at the time, so I was put into the bone marrow transplant room, an isolation room that was cold and dark. The first day of chemotherapy, they woke me up at five o'clock to start. The treatment process was so traumatising, they had to hold me down; I was screaming. I remember that day so clearly and it still causes so much trauma today. During this time I also had many blood and platelet transfusions to keep me alive during the chemotherapy.”

I remember that day so clearly and it still causes so much trauma today

- Maggie

The chemotherapy took a severe toll on her young body. Among other side effects, including severe nausea, Maggie lost her hair — an experience she found deeply distressing.

Following chemotherapy, another brain surgery was done. Unfortunately, the surgery had to be halted because Maggie was losing so much blood. However, for her fifth and final brain operation, three neurosurgeons worked together to successfully remove the remaining tumour.

Maggie then began 35 sessions of radiation therapy, which she was thankful to be able to complete as an outpatient. Maggie and her mum, Shirley, were able to stay at a lodge next to the hospital throughout the weeks of treatment and returned home to family on weekends. Though less physically gruelling, it left her fatigued and emotionally drained.

“Radiation was hard, but mum and I made the most of it and we got to go out into the city afterwards,” she says. “We’d make a day of it, and it helped me feel a little more normal.”

Life after treatment

In November 2011, Maggie’s active treatment ended, marking the beginning of the long road to recovery. However, life after cancer wasn’t easy.

“I was trying to get back into normal life, she explains. “But then I was dealing with all the side effects, all the impacts of surgery as well as the survivors guilt.”

Maggie developed an acquired brain injury that affected her short-term memory and was very fatigued for the first two years after treatment. It was then discovered that her thyroid was underactive, a condition she still takes medication for today.

Returning to school was particularly challenging, and Maggie says she went through a lot of difficult times and lost a lot of friends. “No one understood the challenges I was facing after cancer, the impact it still had on my life. I felt so lonely and didn’t have much support outside my family.”

I was dealing with all the side effects, all the impacts of surgery

- Maggie

Then, when her headaches returned in Years 9 and 10, she again missed a lot of classes — so much so that when it came time to Years 11 and 12, the school did not support her study plans, resulting in a change of school. “Many months passed trying to figure out the cause of these headaches and I had to have a 6^th brain surgery to put a device in my head to monitor the pressure in my brain. Eventually it was found that I was not falling into REM sleep as my brain was not producing melatonin.”

Eventually, Maggie graduated high school and was accepted into university, initially studying occupational therapy and then graduating with a Bachelor of Counselling.

Today

Now 24, Maggie is still dealing with ongoing issues related to her cancer treatment.

Because of her acquired brain injury, she has short term memory loss, often gets fatigued, and feels she is slower in her thinking and her writing. Her balance has also been affected, and she has nodules that develop on her thyroid which she regularly gets checked. Due to the clinical trial, Maggie still continues to have regular MRI scans and sees her oncologist.

Maggie says she finds that almost every day, she is reminded of having had cancer as a child. For example, when she goes to the hairdresser and has someone new, she has to explain that she has multiple scars on her head to avoid shock.

I have pretty bad PTSD now due to the trauma

- Maggie

Even now, simple procedures such as blood tests are also very triggering.

“I have pretty bad PTSD now due to the trauma,” Maggie shares. “I see a psychologist and I'm working through that, but it takes a lot of time.”

“I tell them when I go in for a blood test. I say, I have PTSD, I have severe needle phobia. They give me numbing cream, but it's the images I have in my head in the lead up to the test... and when the test is over, it doesn't stop. I still experience those images for a day or two.”

“Some people, they don't understand it. I've had one doctor tell me that I just need to put my big girl pants on and get on with it.”

I've never had a normal life again since the day I was diagnosed

- Maggie

The legacy of childhood cancer

Maggie says she wants to share her story to raise awareness of childhood cancer and its ongoing impacts.

“It makes people realize that kids do go through cancer and how much it still impacts them every day of their lives after they finish treatment, because that's what I found people didn't understand,” she shares.

“Everyone thinks you just finish and that's it, you go back to your normal life. But I've never gone back to that life. I've never had a normal life again since the day I was diagnosed.”

Maggie also hopes that by sharing her story, she can help others.

“I have made it my mission to spread the word, create awareness and raise money for further support and research. I share my story to give hope to others and to give people a little bit of insight into the journey. I want to help other people who have been through similar experiences,” she says. “If people see my story and it makes them feel like they're not going through this alone and someone else has been through it, that makes me happy.”