Missy Terpstra is struggling with her second round of cancer. Photo / George Heard
A former All Black credits her with nursing him back to health. Now, a Christchurch mum is in the battle of her life after she was hit with a second cancer diagnosis, writes Katie Harris.
Missy and Dave Terpstra were happily living in newlywed bliss when she discovered she was pregnant with twins.
The couple, who already had two boys, Darcy, now 14, and Beau, 12, were excited to add to their brood.
“I was elated to find out I was pregnant because actually, I’d had a number of miscarriages between my children.”
But just two days later, their joy turned to fear when the couple was told Missy had breast cancer.
It was 2016 and the family were living in Denmark, where New Zealander Dave worked for the United Nations in vaccine procurement and Missy, who was born in South Africa, was a medical acupuncturist.
Their lives went “on hold” as Missy began flying to the UK regularly to get treatment for the cancer, and back to Denmark for obstetric care for the twins.
“I had to go through my whole pregnancy not knowing if it had spread elsewhere because they couldn’t give me an MRI.”
She underwent two major surgeries while pregnant but the twins, Tate and Lilli, now 5, were delivered healthy. Afterwards, she had a double mastectomy.
“It took me a long time to sort of accept the bilateral mastectomy, just being a female, and my femininity, my age and even though obviously I was reconstructed, you feel amputated, and I think that was actually one of the biggest hurdles having breast cancer.”
Missy struggled with guilt over how their lives had come to revolve around her treatment, as she was used to being the one caring for others.
“I’m a super, super, strong person, I’m gifted that I am internally strong and I think that’s incredibly helpful. But at the same time, even people who can tackle things and challenges [head-on], there are always really difficult challenging adjustments and shifts to make.”
The mastectomy was a “surgically radical” route, which mitigated the risk of that cancer returning by 95 per cent.
Bar the aggressive form of cancer, Missy said she has always been in amazing health, and friends say she is the “healthiest person they know”. Still, in the years since she’s had to constantly monitor her health.
The family then moved around the globe for Dave’s job before settling in Christchurch as the Delta wave hit.
The family tried to get back to normal with the twins enrolled in a local preschool that All Black Owen Franks’ children attended. The two families got to know each other and Missy helped Franks recover from a rugby injury with acupuncture.
Franks, who had recently returned from a stint playing overseas, ruptured his Achilles last year while training for his return to Super Rugby.
He wrote online earlier this month that Missy had been a “big part” in his journey back to rugby after a series of injuries.
“We’ve just developed a really amazing friendship,” she said.
In March, things took a turn for Missy again.
Missy first realised something was wrong when she felt a “ripping sensation” in the area where she had the breast reconstruction.
“By that evening it had swollen up and it really developed into quite an intense distortion and pain.”
Thanks to her medical knowledge, Missy said she was able to push for a “whole bunch of tests” because she knew something wasn’t right.
During one of her scans, a worker took a sample to check if she had a form of an incredibly rare cancer, which they didn’t think would be the case.
But it was. In April it was confirmed an aggressive lymphoma, a cancer associated with Missy’s breast reconstruction, had developed.
Through her and her husband’s knowledge of the health sector, the pair were able to secure the drug brentuximab vedotin. This drug targets and binds to the CD30 proteins of her cancer and will give her the best chance to fight this. However, it is unapproved and unfunded in NZ.
Missy is in the middle of an 18-week chemotherapy journey and immunotherapy treatment with the drug.
“The drug that I’ve managed to source could possibly give me a 90 per cent chance of cure.”
Missy said an alternative to help treat her condition in New Zealand did not provide the right form of treatment and would increase the likelihood of relapse and would result in increased toxicity.
She said the cancer was found to be very aggressive and she was in a lot of pain.
“I really needed to be on some form of treatment urgently, and I’d just come out of major surgery, so I didn’t really have very long to get the drug into the country. So I was very, very fortunate to get on to the right treatment plan when I did.”
As time has gone on, Missy said it was clear this was the right choice and she is grateful they were able to pursue the non-funded treatment.
But it is costly, and the family had already exhausted all avenues including compassionate funding and appealing directly to the drug companies. Even selling assets, she said, would not allow them to pay for the treatment fast enough.
Ironically, she said, Dave previously worked in Africa doing emergency medical procurement and never would have expected his wife to need the same help.
To help support her, a friend created a Givealittle page to cover her treatment costs. The goal is to raise $125,000 and at the time of reporting nearly $83,000 had been donated.
For Missy, who admits accepting help has been a “challenging” part of her journey, this is both the most uncomfortable yet most comforting experience she’s had.
“Our friends, knowing us, know that we would never ever want to [ask] for anything, but they also knew our predicament and our situation and we needed to fund this drug every three weeks.
“I can’t express that situation and that feeling, I know for me a lot of people I’ve cared for throughout the world and my friends, the biggest thing they’ve said is they really like that when they feel helpless, they feel like they can do something that’s really helping to save me.”
Earlier this month, Franks got behind the cause by auctioning off his 80th test jersey to help raise funds for Missy.
“I don’t think anyone would really have known about my situation without Owen Franks. He’s just phenomenal, he just [said] honour with the jersey is in earning them not collecting them because he wanted to help.”
Two nurses ended up buying Franks’ jersey for $4540, which she said, as a former nurse, made her feel even more emotional about the situation.
Missy said she had received exceptional care in the New Zealand healthcare system and wanted to highlight the “incredible” treatment.
“I know what good care is, and despite Covid and flu and all the challenges they’re up against at the moment, I’ve been through so many different tests and different specialties in the last three months and absolutely everywhere has been unfailing in their care.
“I do feel like in these demoralised times it’s really important that they are championed for what they do.”
Missy’s treatment involves getting chemotherapy and immunotherapy once every three weeks as infusion and she takes oral chemotherapy drugs for five days as well as an injection to support her bone marrow.
“One of the challenging things at the moment is getting chemo during Covid and flu time, because we’re very limited when you’ve got an immunosuppressant situation going on. And it’s not like I can interact socially in a normal way, and I’m a super sociable person.”
Because they want to keep their children in school, she said they also wear masks at home.
“I have a really awesome relationship with my husband and my kids.
“When you’re in these types of circumstances, there’s obviously a moment where you’re going through shock and you have to accept the challenge you’re going through and I think the first cancer I went through I had to grieve the illness, if that makes sense, obviously it was really devastating, and this one was scarier for me because it’s so rare and there was the chance I won’t survive.”
Missy is just over halfway through her treatment, but already is looking at ways that she can help others.
She is due for her midway scan next week but says they won’t know how effective it has been until the treatment is over.
However, overseas experts she’s consulted told her with the drug she is on now there is a 90 per cent chance of cure.
She has reached out to the nurses who bought the jersey to ask whether she can use part of the auction money to help pay it forward to help someone else with cancer.
“I still have a couple of cycles to get through, and I just feel really lucky that there has been awareness, over my side of things and people have been so generous and my husband and I are really keen to give back.
“I’m really fortunate to be having cancer care here.”