STACEY Johnson’s eyes light up as she sweeps up her 14-month-old son, Reggie, in a cuddle.
The doting mum showers the boy with kisses, and his little face responds with a cheeky smile.
Johnson has a new appreciation of the simple things in life since she was diagnosed with cancer 16 months ago.
It’s a battle she’s facing head on and, right now, she’s winning.
Johnson, who is married to former Geelong footballer David Johnson, easily recalls the day her world came crashing down – June 13, 2012. At 26, she was newly married and in the second trimester of her first pregnancy.
A year earlier doctors had discovered a fibrous tissue in her breast, so when it started to grow, they put it down to pregnancy hormones. But Johnson knew in her heart something wasn’t quite right and, after pushing for further investigation, it was decided she would undergo a relatively simple procedure to remove it.
“At the time my biggest concern was having to have steroids because, with any operation when you’re pregnant, you’ve got a risk of going into early labour,” Johnson says. “But I thought, ‘I’ll get it out, then have 15 weeks to go and it will all be fine’.”
The lump was sent to pathology, “just to be on the safe side”, and Johnson figured the hard part was over.
She couldn’t have been more wrong. When she returned to the doctor for what she thought would be a routine check-up a few days later, she received the life-changing news.
“Dave was away camping at the time and when the doctor called me in he made a comment like, ‘You’re not here by yourself, are you?’ As soon as he said that, I knew something was up,” she says.
“He told me it was a sarcoma cancer, one of the rarest forms of cancer you can have, and that he didn’t know much about it. Even though it was in my breast, it could have grown anywhere. So it wasn’t a typical breast cancer.
“I was in shock. I just remember my blood boiling, my face going red, my heart pumping. You start thinking, ‘How did this happen? How did it get there? How do we fix it?’
“And not only that, but I was pregnant. It shattered my whole world.”
Given the large size of the lump and research on this particular type of cancer, Johnson’s doctor initially gave her little chance of survival. Because she was pregnant, she was unable to undergo most of the routine tests and scans to determine the extent of the cancer.
Instead, her doctor had to rely on blood tests and a basic lung X-ray.
Many questions went unanswered but when the X-ray came back all clear, the odds shifted slightly in Johnson’s favour.
“I was upset at first; the first thing you do is cry,” she says. “But, to be honest, I hated the fact that what was happening to me made everyone else worry and upset. I thought, ‘There are two ways to approach this and I’m going to choose to be positive’.”
After a series of meeting with oncologists, obstetricians and paediatricians, Johnson underwent a mastectomy two weeks after her initial diagnosis.
Two weeks after the operation, on Friday the 13th of July, the Johnsons’ baby boy, Reggie, was born by caesarean section at just 29 weeks.
Stacey says the irony of Reggie’s birth date was not lost on them but the early birth allowed her to undergo radiation treatment.
“It was a question of, ‘Do we risk bringing this baby out early to try and save me, when there’s a possibility the cancer is too far gone that I can’t be helped?” she says. “As a mum, you want to do everything you can to protect your child. You’d risk your own life to make sure they’re safe, and I was prepared to do that.
“But I also had to consider Dave, who had his wife to think about. And Dave said, ‘There’s no point bringing a baby into this world without his mum’, so we needed to meet in the middle.”
An oncologist and 11 other medical professionals were at Johnson’s bedside for Reggie’s arrival and did a search immediately after the birth to see if the cancer had spread.
Given an unofficial all-clear, Johnson recalls it was the first time that day that she let herself cry.
“I got really emotional because I just wanted to know that delivering him early wasn’t pointless,” she says. “Even though it wasn’t confirmed that I was OK, I felt positive and I could finally let myself enjoy the moment.”
But her relief was short-lived. With her radiation treatment postponed after a complication with her mastectomy wound, doctors found that the lump had already returned.
For the next five weeks, her life became a blur as she underwent twice-daily radiation sessions, physiotherapy, dietician meetings, doctor consultations, and daily visits to Reggie. She had to fit in sleep when she could.
She was also expressing breast milk every two hours for her newborn son.
“A lot of people said they couldn’t believe that I was persevering with breastfeeding, but I knew it was the best thing for him and I wanted to be able to do something for him,” she says. “Cancer had taken so much of the pregnancy joy away from me so I wanted to try and do something a ‘normal’ mum would get to do.”
The couple finally brought Reggie home in October.
But Johnson suffered another major setback when the lump returned late last year, forcing her to undergo major surgery just days before Christmas. It meant her husband had to be a full-time dad to Reggie while she recovered.
Since then, Johnson’s scans have been clear. As for Reggie, she says he’s a happy and healthy little boy.
Celebrating his first birthday in July was a big milestone, and Johnson says it was the ideal chance to thank those around them for their unwavering love and support.
The experience has also made her marriage stronger than ever, she says.
“Dave was amazing and we really did get through all of this together,” she says. “If I had a bad day he tried to be positive and vice versa. Dave was always my shining light.”
He still works at the Geelong Football Club in player development, and says his wife’s optimism through the dark days was nothing short of inspiring.
“To be honest, I can’t believe how well she’s dealt with everything. Even now, she’s really motivated to help others,’’ he says.
“Whenever we got negative news, even though initially she’d take it hard, she’d straight away try and see the positive side. I honestly couldn’t have imagined she was that strong and it definitely helped me.
“I think Reggie really helped us both get through it – he was the positive in all of this.”
Johnson, who still has more scans ahead of her, admits it’s hard not to think about the ‘what ifs’, but she refuses to dwell on the unknown.
Instead, she has drawn inspiration from the success stories of other sarcoma cancer sufferers, including her cousin’s husband and former Essendon great, Adam Ramanauskas, and Geelong Paralympian Kelly Cartwright.
“Every day I get a good, solid reminder of what I’ve been through because the scars don’t fade,” Johnson says.
“But they remind me of how lucky I am. I’m lucky that I’ve got a healthy little boy, I’m lucky that I’ve got such a supportive husband, I’m lucky that I’m here.”
Stacey Johnson is the ambassador for Barwon Health’s Catwalk for Cancer on October 6 at The Pier. For details, visit www.geelonghospitalappeal.org.au/whats-on
She is also a guest speaker at the fund-raising Pink Ribbon Charity Gala at Moonee Valley Racing Club on Saturday, October 12.
