Taagen Benner has one kidney.
The subject came up when the now eight year old was in Grade 1 at St. Patrick’s elementary school as part of a teacher’s “what makes you special” assignment.
Young Taagen blurted out his one kidney fact.
The ‘why’ in simplest terms, is that his second kidney was claimed by cancer.
Taagen, now in Grade 3, is the picture of health but he really always was, says mom Natalie Gaines. He was mostly a happy, rosy-cheeked baby, even at 11 months when doctors discovered a large tumour in his stomach.
Gaines knew there was something not right early on, though she was primarily dismissed as a worrisome first-time mommy. But her baby boy disliked sitting and crawling, preferring a straight-legged, upright position, and she knew something was wrong.
Then a doctor agreed the hard feeling of Taagan’s stomach was more than constipation or gas and whisked him off for an ultrasound.
“They saw the mass immediately,” Gaines says, the lilt of Leeds, England still in her voice, despite 15 years living in Canada. “I didn’t even feel like I was in the real world.”
A social worker came along and their lives changed dramatically. Mom and dad put their relationship difficulties aside and without stopping to pack a bag, they headed for Vancouver. Taagen was diagnosed with a Wilms’ tumour, or nephroblastoma, cancer of the kidneys that typically occurs in children and rarely in adults.
A week later, the infant endured a five-hour surgery to remove the tumour; two hours longer than expected and it included a blood transfusion. Then treatment started with a couple of weeks of radiation “just in case” followed by six months of chemotherapy.
“It was so stressful going to Vancouver for treatment,” Gaines says.
Fortunately, most of the travel was cut to trips to Victoria General Hospital’s pediatric oncology unit, where they were able to administer the chemotherapy.
“It becomes like a little family there. Not only a safe place for Taagen but I knew them and I felt safe,” she says. “It’s great when it’s localized.”
While Gaines says the staff in Vancouver were amazing, VGH staff provided a welcome calm in a sea of anxiety. It’s simply “how the Island is” she said. Those connections became critical, even pseudo-friendships.
“(Cancer) changed me. Friendships changed,” she says. “I’m reserved a bit about things, but you don’t know what tomorrow brings.”
It didn’t help that Gaines was at the end of her maternity leave and struggling to pay the mortgage, but her step grandparents came through, as did the businesses of Oak Bay and neighbouring communities. They raised $10,000 through a pub event, Gaines says, the relief and gratitude still evident in her voice years later.
“The women at Nicholas Randall (on Oak Bay Avenue) still know Taagen,” Gaines says. “It’s like old England used to be – friendly community, so close knit.”
Taagen doesn’t recall his bout with cancer.
“I don’t know because I was just a baby,” he says, flashing the type of grin only an eight year old can conjure. “I remember the nurses, but I don’t remember having cancer.”
He does remember weekly, then monthly and now annual tests that can include blood, X-ray and heart monitoring (ECG and ECHO) both to keep the cancer in check and watch for known side effects of the treatment as he grows.
“I used to be really afraid (of needles) but I’m not anymore,” he says.
Parents’ association events soothe all ages
Taagen Benner isn’t likely to jump into things like sports at school according to his mom Natalie Gaines.
“He’s really quite shy,” she said. Recently Taagen’s developed a more outgoing character at school and is excited to do things such as an interview with his local community newspaper.
Part of his personal growth, Gaines feels, is hanging out with other kids who bear the scars of surgery and tiny tattoos from radiation treatment. The gatherings of children who have defeated cancer – or are still in the fight – organized through the BC Childhood Cancer Parents’ Association are designed to bring out the joy in a child.
“That seems to be his connection to confidence,” Gaines said, adding the parent-only meetings have also helped her, providing the opportunity to be the supportive fellow mom with the “positive outcome” for her child.
“It sounds strange but (cancer’s) been a positive experience,” she said. “People were always there to help. The bad experience was the fear of what might happen.”
Learn more about the B.C. Childhood Cancer Parent’s Association at bcccpa.org online.