Life in the long shadow of cancer: Ula's story

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Life in the long shadow of cancer: Ula's story

Moving from childhood to adolescence can be a tricky time. But imagine coping with a cancer diagnosis too. That's exactly what happened to Ula — at the age of just 14, she's already had cancer twice.

A dark patch

'You have cancer'

Award-winning freelance journalist Ginger Gorman was diagnosed with thyroid cancer at the age of 30.



Now in the clear, Ginger brings a unique perspective to this special four-part series about those life-altering words — "you have cancer".

(Photo: Richard Tuffin)





Award-winning freelance journalist Ginger Gorman was diagnosed with thyroid cancer at the age of 30.Now in the clear, Ginger brings a unique perspective to this special four-part series about those life-altering words — "you have cancer".

As the three of us chat, 14-year-old Ula leans affectionately on her mother Caitlin's shoulder.

They both laugh and talk over each other's sentences.

What they've been through together has drawn them even closer.

With a melting smile, Ula describes herself as "very bubbly and friendly".

She loves singing, dancing and "going to the shop to go and do teenage girl stuff".

Despite appearances, her journey through childhood has been anything but routine.

Three years ago Ula woke up the morning after going to a friend's party and found she couldn't walk without limping.

Initially Caitlin, 39, didn't think much of it. After all, she'd seen her daughter running around like crazy the night before.

Perhaps she'd simply "overdone it".

"It just didn't go away. And it kept on getting worse too," Ula says.

"And then we noticed later that my appetite had gone, and that was something that concerned Mum … because I was a really big eater."

Caitlin took Ula to the doctor, who sent her to have an ultrasound and an X-ray.

"There was a shadow in the X-ray, in her femur," Caitlin says.

"A dark patch within the bone. She [the GP] just said 'That shouldn't be there'.

"I did freak out, but at the same time I still couldn't possibly get my head around it being anything sinister … I certainly wasn't thinking she would have cancer."

After some tests at the Royal Children's Hospital in Brisbane, Caitlin and her then-partner Jeremy were called into a conference room and told that their daughter had Ewing's sarcoma — a type of bone cancer.

Caitlin remembers being "really angry" and screaming, swearing and stamping her feet.

Jeremy, on the other hand, was crying.

"I wanted to punch the oncologist," Caitlin recalls. "You know, I thought, 'How dare you tell me this?'"

When her parents emerged Ula, who was 11 at the time, immediately knew something was badly wrong.

"You both had very red eyes and just tear-stained faces," Ula tells her mum. "And then I started screaming."

In the cancer ward

Not long after this, Ula had a central line put in — a long, thin tube inserted by a surgeon into a vein in the chest, in order to administer chemotherapy.

Two rounds of chemo were followed by surgery to remove her cancerous femur from the ball joint at the hip down to just above the knee. Doctors replaced the diseased bone with a prosthetic and seven more rounds of chemo ensued.

"It was just like, 'Bam! Let's do it'," Ula says.

Altogether, Ula's treatment took 11 months. Her prevailing memory is of the terrible nausea caused by the chemo. Medication prevented her from actually vomiting, but Ula recalls dry retching and simply wishing she just could throw up.

While Caitlin describes the experience as "very traumatic," she says the pair formed an indescribable bond with other families going through treatment at the same time.

"When you do make connections with people, that really helps it to not be so frightening. It becomes more normal, as if you're all fighting together," Caitlin says.

"We definitely couldn't do it on our own," Ula agrees. "You just have to try to … be optimistic about it."

The mornings before chemotherapy were a kind of "torture", Caitlin says.

We wanted to give that hope and fun and love to all the other cancer patients. Ula

Ula would scream that she didn't want to go to hospital and Catlin felt "so helpless".

In the hospital Ula made four close friends, who have since died from cancer.

She talks at length about Scott, who she saw as a brother. When the pair was together in the oncology day unit, their laughter was infectious and the other kids joined in.

"We wanted to give that hope and fun and love to all the other cancer patients," she says.

"He was such a great person and he'll always be remembered."

Reflecting on this, Caitlin knows not many 14-year-olds have been through the things Ula has.

"Ula has become very strong. We do, as a family, have strong spiritual beliefs. We prayed a lot together for healing," she says.

More bad news

Over those long months, Ula missed school. She was ecstatic to be declared cancer-free in April 2014.

"I was so bored in the hospital. I just wanted to be around my friends," she says.

Returning to school wasn't easy though. Ula had lost her hair, including her eyebrows and eyelashes.

One teacher insisted she was boy. Another teacher refused to believe she was still too tired and unwell to complete a sports challenge.

"You don't want to be known as the girl with cancer," the teacher told Ula.

I wanted to get a knife and slit my wrists. Ula

Then in January last year, Caitlin noticed Ula was bruising badly.

A short time later, her shocked oncologist diagnosed her with treatment-induced myeloid leukaemia — a blood cancer caused by the initial chemotherapy.

"I wanted to get a knife and slit my wrists," Ula says.

She needed a bone marrow transplant, but despite a worldwide search, there wasn't a match.

"The only choice they had was to give her what is called a haploidentical stem cell transplant," Caitlin explains.

"Which means they harvested my stem cells, put them in an incredibly complex machine and processed the cells for 20 hours before transplanting them into her."

Strangely, this switched Ula's blood type from A to O.

"Our blood DNA is [now] identical," Caitlin laughs.

"If I killed anybody, I could blame it on Mum," Ula quips with black humour.

Looking forward to the future

Caitlin points out that both types of cancer her daughter got — Ewing's sarcoma and treatment-induced myeloid leukaemia — are rare.

"I'm a bit of a miracle," Ula says.

"You are a miracle," Caitlin agrees.

I'm a bit of a miracle … I just feel like it's just going to happen. It's not impossible. Ula

Ula has been cancer-free for more than a year now.

And while she feels elated that her daughter is well, Caitlin has post-traumatic stress, and a feeling of "survivor guilt."

"I've got three or four women that I was particularly close to who have lost their children," she says.

This is one of the complex reasons that the whole family, including Ula's younger sister, Safina, 6, are each in counselling.

There's a lot to work through.

For her part, Ula says she's "looking forward to the future".

She plans to become a vet and wants to have a family — even though the treatment has likely affected her fertility.

"I just feel like it's just going to happen. It's not impossible," she says.

Ula's story is the second in a four-part series exploring life after a cancer diagnosis. The first was Warren's story. For series updates, subscribe to the ABC Health & Wellbeing newsletter.

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Topics: cancer, diseases-and-disorders, health, community-and-society, family-and-children, children, brisbane-4000, australia

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