Mother's story of loss, grief and a cancer blow

Sarah and husband Greg, along with daughters Hazel, 7, Willa, 2, and step-daughter Tayla, 19, travel to Tekapo each year on the anniversary of Mackenzie's death. Photo / Supplied

A mother who has experienced tragedy still manages to find joy in the small things. After losing her 13-day-old baby and being diagnosed with stage four ovarian cancer with a life expectancy prognosis of five to 15 years, Sarah Luxon uses her blog to write about the "messy things" in life. Emily Moorhouse reports.

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 Luxon lost her baby Mackenzie to a heart defect when she was 13 days old. Photo / Supplied

Mackenzie died from a heart defect, where a hole in her heart, known as a patent ductus arteriosus, hadn't properly closed over after she was born, as well as having high blood pressure in her lungs.

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 7-year-old daughter, who was 2 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 losing Mackenzie.

The woman said to Sarah: "That's given me goosebumps" - and told her about Kenzie's Gift, a charity that supports families going through grief or loss. 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, who isn't a strong swimmer, started off with a goal of raising $300 and was "very touched" by people's generosity when she raised more than $3000.

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.

Sarah Luxon. Photo / Supplied

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 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.

Sarah said she is still trying to get her head around her prognosis and gets tripped up on a daily basis by her 7-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.

"I just want to help people, I just want to make a difference in someone else's life."