Rough waters Life after loss
Parkinson’s disease and a degenerative heart condition are not stopping an Auckland cancer survivor from living the fullest life she can. Hannah Martin reports.
When Nic Russell learned she had Parkinson’s disease, the 46-year-old felt daunted, but relieved. Having already battled aggressive breast cancer, the loss of her daughter, and a degenerative heart condition, the Auckland woman felt validated – it wasn’t all in her head.
Despite her ‘‘malfunctioning body’’, Russell is living, and she’s determined to make her life count.
Every day this month, Russell is getting in her togs and braving the brisk waters off Auckland’s North Shore as part of a 30-day ocean swim challenge, raising funds for the charity she started to honour daughter Kenzie’s legacy.
In 2005, 21⁄ 2- year-old Kenzie started to stumble and fall, screaming in pain.
Over three weeks in Starship Children’s Hospital, Kenzie – an active, ‘‘feisty’’ little girl – went from walking to paralysis. A full-body MRI found her spinal cord was being compressed by an aggressive paraspinal bone cancer.
Kenzie was started on intense chemotherapy and responded well.
Then three months later, at just 31, Russell was diagnosed with aggressive, stage 3 breast cancer. She underwent a double mastectomy and started years of intensive treatment, all while trying to care for Kenzie and son Conor, then 5.
Nearing the end of 2005, thingswere looking up. Kenzie had won her fight against cancer and was walking with a frame. ‘‘But cancer kicked us into touch really quickly.’’
Kenzie – immunosuppressed from cancer treatment – developed an infection, which led to septicaemia (blood poisoning, triggering sepsis). On December 29, 2005, Kenzie died in Russell’s arms.
‘‘To me, she didn’t lose her fight. It was her last show of strength and courage to let go of her body that could no longer do what she needed it to,’’ Russell said.
Grief ‘‘brought me to my knees’’, and Russell found little in the way of mental health support for those grappling with serious illness or bereavement.
Russell – who worked as a play specialist before having children – went back to university, and in 2008 established registered charity Kenzie’s Gift. It provides support, resources and therapy sessions for children, young people and their families affected by lifethreatening illness or loss. Russell ‘‘wanted to show the kindness forward that had been shown to me’’.
In the years that followed, Russell – ‘‘not a natural athlete’’ – pushed herself to her limit, taking on marathons, triathlons, an Iron Man and an eighthour adventure race, all to raise funds for Kenzie’s Gift.
Sport became a coping mechanism to deal with the trauma she had been through. ‘‘It became so much part of who I was.’’
In 2012, while training for 226-kilometre iron distance event, Challenge Wa¯naka, Russell started to falter. ‘‘When you’re training at that level, you’re told it’s ‘mind over matter’ – push through the pain, and you can get through it,’’ Russell says. But at a cardiology appointment two months after the event, Russell, then 39, learned her heart function had dropped by 11 per cent. Her heart was stiffening due to a chronic, degenerative condition called hypertrophic cardiomyopathy. Although not life-threatening, the condition, which her father died of, was life-changing, hampering her ability to train and compete at sport at the same level.
She adapted and beganwalking over running, swimming with fins on and using an e-bike, but over the following two years began experiencing new issues, such as stiffness and rigidity. Russellwas ‘‘shuffling a lot’’ and in constant pain. A tremor developed in her leg and hands, she was having trouble swallowing and was choking often.
At a review appointment with her oncologist late last year someone connected the dots: it was Parkinson’s.
Though it’s a ‘‘daunting’’ diagnosis, Russell says she can’t worry about the future, as ‘‘I’m here now’’.
Dopamine replacement therapy has worked ‘‘amazingly well’’, bringing the dexterity back in her hands, and putting an end to most of her stiffness and rigidity.
She gets on a bike and into the water as often as she can, but between her heart condition and Parkinson’s, Russell can swim only 50-100 metres in one go. But she’s not letting that stop her.
She has raised $5300 through the ocean swim challenge so far, with another week to go.
Swimming – though ‘‘it isn’t pretty’’ – is rhythmic, she can pace herself. The cold water also eases the daily pain Russell carries.
Like many charities, Kenzie’s Gift felt the sting of Covid-19, with young clients feeling increased anxiety and stress.
One-on-one therapy makes up most of the charity’s work, supporting about 50 families a year to access 500-600 therapy sessions, funding permitting.
The appointments cost roughly $160 each, and ‘‘you can’t fix what these kids are going through in a couple of sessions’’.
‘‘We want to create a brighter future for them, [to] give them the tools and resilience they need.’’
They’ve facilitated more than 3000 therapy sessions since their inception, supporting families in Auckland, Waikato, Tauranga and Christchurch, and provide grief packs and online resources to many more.
A single mum, Russell couldn’t afford therapy but had the support of a ‘‘wonderful’’ psychotherapist who ran her own foundation. It’s kindness like that that pushes Russell forward.
Life has not been easy, but ‘‘I’m still squeezing every bit of life I can out of it’’. ‘‘Kenzie had a short life, and I for some reason got to have one. I thought it would be awful to dishonour her legacy and not live life to the fullest I could.’’
Russell, a self-described ‘‘good natured Irish loon’’, says our ‘‘death-averse’’ society doesn’t talk openly enough about grief – something she wants to change.
She says people can survive ‘‘the most traumatic things life can throw at you’’, and though things may not be the same, you’re never alone. ‘‘The human spirit is stronger than we give it credit for.’’
Kenzie had a short life, and I for some reason got to have one. I thought it would be awful to dishonour her legacy and not live life to the fullest I could.