Four years ago Sarah Luxon, 34, gave birth to what appeared to be a perfectly healthy baby girl named Mackenzie.
However, the second week into Mackenzie’s life, Sarah noticed she was becoming quite grizzly but, after a check up from the midwife, was told everything was okay.
A few days later, feeling like something wasn’t right, Sarah took Mackenzie to an after hours medical centre.
Within minutes of arriving, Mackenzie’s heart stopped beating.
"It was horrible, just watching my wee baby being resuscitated and having to call my husband to tell him that her heart had stopped and to come in," Sarah said.
"She passed away very suddenly and I had no idea what had happened until the post-mortem came back, and it took months."
Sarah said while the hospital staff did an incredible job trying to help Mackenzie, it was too much for her little body to handle and she died at 13-days-old.
"She coped with what ended up being fatal very well right up until her body went: 'We can’t do this anymore'."
Afterwards, Sarah felt there was a lack of mental health support offered with no funded clinical psychologists or counsellors to talk to.
She attended a support group but said she would have benefited much more from one-on-one therapy, and feels her seven-year-old daughter, who was two at the time, would have benefited from this as well.
Every August for Mackenzie’s anniversary, Sarah goes to Tekapo with her husband Greg, their daughters Hazel, 7, and Willa, 2, and her step-daughter Tayla, 19, to connect as a family during what is a very hard time.
Last year when they were checking out of their accommodation, Sarah asked to book for the same time next year and got talking to the woman at reception.
She opened up about the reason behind their yearly visit and the pain of loosing Mackenzie.
The charity was doing a winter swim challenge to raise money for mental health to go towards helping families in similar situations to Sarah’s.
So Sarah decided to commit to the winter swims, mostly at New Brighton Beach, to raise money for what she described as a very worthwhile cause.
"I’m not a big putting myself out there person but I did 13 dips so one for each day of Mackenzie’s life," Sarah said.
However, during her dips, Sarah noticed a lump on her abdomen that she assumed was a hernia.
But after feeling fatigued and experiencing bowel issues, she went for a check up.
After multiple visits to doctors, a gynaecologic oncologist, orthopaedics, an ultrasound, an MRI, a biopsy, and months of waiting, Sarah was diagnosed with stage four ovarian cancer and given a five to 15-year prognosis.
During this time, Sarah continued with her winter dips, in spite of it being painful on her abdomen.
Sarah said she felt frustrated with how long it took to get a diagnosis and said if it was a lump on her breast she would have got it checked straight away.
"As women we get told to check our breasts, but we don’t hear that there’s no screening at all for ovarian cancer.
"It was not something that I knew about or considered," she said.
"There’s just not enough awareness about all of those issues and people feel really awkward talking about ovaries."
Faced with the prognosis and still grieving the loss of baby Mackenzie, Sarah realised she felt alone so started a blog in hopes of helping others going through something similar.
She called it Joy in the Small Things and posts regularly about navigating life with her diagnosis and sharing her experiences.
"I started it up just as a way to share with people what was happening with cancer and the treatment and I found that writing helped me work through quite a few things emotionally and mentally.
"I felt quite isolated or separated because I didn’t know anybody else who had been through a similar experience with having a daughter die at 13 days and then finding that there’s not a huge amount of awareness on ovarian cancer as well," Sarah said.
Sarah has undergone surgery to have all the visible tumours removed and began chemotherapy on Christmas Eve, and is now on hormone blockers to prevent any further growths.
"Scientists haven’t done studies on people with this cancer [ovarian] so they don’t know how best to treat it so it’s not that there are drugs out there that aren’t funded, it’s that they don’t know what drugs to actually make available for us,” Sarah said.
"There’s no research so it feels quite lonely. They can’t even give me a prognosis better than five to 15 years."
Sarah said she is still trying to get her head around her prognosis and gets tripped up on a daily basis by her seven-year-old asking questions like will she ever be a grandma?
"How do you respond to that? Yeah, it’s very hard."
Sarah has stopped working to spend as much time as she can with her family and said she tries her best to stay in the moment.
"I can’t bring myself to miss out on the potentially short time left with the kids. I’m enjoying taking the kids to swimming lessons and being there at the school gates for pick-up."
Sarah said she feels incredibly lucky for the people she has around her and after all she’s been through it’s changed her perspective on life.
"It’s made me appreciate what’s actually important, I don’t sweat the small stuff," she said.
"I just want to help people, I just want to make a difference in someone else’s life."
