When Lisa Chuinard Hepner's doctor told her she had skin cancer and needed surgery, she was mad.
"I was like this is enough," she recalled. "Cancer took my job. My house. It's taken my daughter's hearing and some of her vision and my son's schooling. I had had enough. I was pissed."
Almost two years ago, her son was diagnosed with leukemia and her daughter with neurofibromatosis type 2, a rare disorder that causes tumors to grow on nerve-endings.
So the 46-year-old mother of five fought back.
Noah, Lisa and MeiLi Chuinard Hepner stand strong together. Lisa has committed to riding at least 300 miles on her bicycle during the month of June with the goal of raising $1,000 dollars for the Great Cycle Challenge USA. She has currently raised about $4,5000.
She decided to do one triathalon every month for 12 months and started raising funds through the Great Cycle Challenge USA, a fundraising event in which cyclists commit to riding a certain number of miles in one month.
Lisa's goal is 300 miles for the month of June.
"I feel like I'm doing something that has a greater purpose," she said. "We're almost at $4 million collectively in the U.S. and it's amazing. That money could save so many kids' lives and heartache. The outcome is that this organization could find a cure. That would be pretty profound. We can only hope.
However small my part is, helping to donate towards research that could possibly find a cure some day so no other family has to go through this ever again would be amazing."
Noah
It was August 25, 2015 when Lisa's world started crashing down on her.
It's the day doctors told her that her "amazing" 8-year-old son, Noah had leukemia.
He had been getting fevers.
"I kept taking him to the doctor and they were running all kinds of tests," Lisa recalled. "The doctor's office said they thought he had a virus in his blood and we were referred to hematology to see what the virus was."
But it wasn't just a virus.
"We were ushered into this private room where the doctor came out with it," Lisa said. "I'm sorry. I have bad news. Your son has leukemia."
It's news nobody wants to hear about their child.
"I lost it," Lisa said. "I went running in the hallway."
Noah was admitted into the hospital that day and stayed for a couple weeks. He had a port put in and he started chemotherapy the next day.
"From August 2015 to August 2016 we were in the hospital every single holiday, except Halloween, and every birthday for everyone in the family," Lisa said.
All that hospital time meant Noah missed most of third grade and a lot of fourth grade.
When his hair was thinning from chemotherapy, Noah said he didn't want cancer to decide when he would be bald. He wanted to decide himself. So his whole family got their heads shaved together.
Lisa's husband, Jonathan helps her keep it together.
"Jon's kinda the glue that holds us all together," Lisa said. "He's the voice of reason and the sound mind. He doesn't worry. So I do all the worrying probably enough for ten people."
Noah is currently in remission. He is two years into his three-and-a-half year protocol. His last treatment will be on December 9, 2018. In the meantime he takes oral chemo every day, once a month through his port and once every three months in his spine.
"He's amazing," Lisa said. "He has this mantra that he says 'don't stop, won't stop.' It's what gets him through the hard days."
Noah and MeiLi Chuinard Hepner walk the halls of the Diamond Children's Medical Center. Noah has leukemia and MeiLi has a rare condition called neurofibromatosis type 2.
MeiLi
In April 2016, while shopping with her daughter, MeiLi, Lisa noticed the girl's eyes weren't on track. They were going in different directions.
"Being in this cancer world, I knew that could very well mean she had a brain tumor," Lisa said. "I freaked out."
The next day MeiLi saw the doctor and was given a CT scan and an MRI.
The results were not what Lisa expected.
"She didn't have a brain tumor. She had around 20," she said.
MeiLi was diagnosed with type 2 neurofibromatosis, a rare genetic disorder that causes tumors to form on nerve tissue. The tumors can develop anywhere in the nervous system including the brain, spinal cord and nerves.
The tumors are benign, but but can sometimes turn cancerous. Doctors prescribed chemotherapy, but it didn't help.
"They're very slow-growing tumors," Lisa said. "She was adopted from China and I was reading in the notes they wrote that they knew she was deaf at 11 months old. So the tumors had already been growing. And, it's causing vision impairments also. There is no cure."
MeLei had brain surgery right after she was diagnosed to remove the tumor that was making her eyes go in different directions. Most of the tumor was removed and her eye is mostly fixed, but her vision is bad.
"She's got a tumor on her brain stem that's totally inoperable that can cause all kinds of havoc if it grows," Lisa said. "The info we've been given is not what you want to hear about your kid. We can only hope science can catch up before this thing gets out of control."
Her condition doesn't stop MeLei, now 11, from being a normal kid, though.
"There's a whole multitude of things that can happen," Lisa said. "But, hey. She's running 5Ks and going to Tucson Racquet Club Camp."
Community and family
After the shock wore off, Lisa says she started to find her community at Diamond Children's Medical Center.
"We formed such a community among families that just knowing you're not alone sometimes is comforting in itself...The one thread that bonds us all is our love for our kids and the fear that we could lose them," Lisa said. "So there's a lot of camaraderie among families, moms especially. That's been a huge saving grace."
Barbara Anderson is one of the moms Lisa bonded with. They were in the hospital at the same time for about two weeks.
Both of their sons have leukemia. Barbara's son, Jude had relapsed for the third time when the two mothers met.
"Lisa is amazing," Barbara said. "She's always the type of person on days Jude was in the hospital she would text and ask if she could bring us Starbucks. On days we have to go to clinic, it's easy to be like I don't have time to stop for other people. But seeing her do that has motivated me to think about other families and to be kind. It just has this ripple effect...She's a leader in the sense that her actions motivate others in our community."
Despite that, there are times when Lisa feels like running away from all of it.
"Everything cancer. I'm just so tired of it sometimes," she said. "But the more I run away the more I'm called to do things."
Though this whole experience has been "scary and doom and gloom," Lisa says her family is so much closer because of it.
"Even having external losses of job and house and stuff, it just pales in comparison to families who have lost their kids to this horrible disease," Lisa said. "We are filled with gratitude..."
Through the scary doom and gloom of treating illnesses, losing jobs and houses, the Chuinard Hepner family has gotten even closer. Pictured clockwise from the top are Amira, Jonathan, Lisa, Sequoia, Milan, MeiLi and Noah.
Fighting back
For about two years, Lisa, who had always been pretty active, didn't exercise.
"My life was just focused on my kids. I worried constantly," she said. "So I decided I need to get up. Even if it's just to run a block, I just need to get up and do something, so I was literally forcing myself to get up and do something."
She went for a few runs and realized she would never stick to it if she didn't have a goal. So, she signed up for a 5K.
"It was so awesome and it was a superhero run and I ran it for my kids and they were all there," she said.
From there, a friend of hers said she wanted to do a triathalon.
"I thought that's amazing. I can swim and probably ride a bike and she said 'Yeah, just put it together,'" she recalled. "So I started training and put it together and thought 'I think I could do this.'"
She did her first triathalon this past March in Rocky Point after undergoing surgery to remove the skin cancer, which turned out to be "no big deal."
She came in fourth in her age group.
Exercise became therapeutic for her.
"So, I decided I'd do 12 in 12 months," Lisa said. "It's fun and it's the only time when I'm training or racing that I'm not worrying. Because the rest of the time I'm in my head and that's a scary place to be."
Her friend Barbara can relate.
"It's this state of hyper-vigilance, fear and just thinking. And physical exercise can clear your mind, give you something to focus on other than your child and I think that's a healthy way to cope," Barbara said.
Shortly after she started competing in triathalons, Lisa found the Great Cycle Challenge.
"I thought this is fantastic. It's a great way to train cycling for a month and raise money for cancer research," she said. "No brainer. So I started with the goal to raise $500..."
When she surpassed $500, Lisa suggested raising the goal to $750, but Noah said "Heck no, let's raise it to $1,000."
She has crushed that goal and is now at $4,500.
"It definitely is probably inspiring to other people and I like what she's doing," Noah said.
Raising money for research is a way for families to have some control during a time when nothing else in life is controllable, Barbara said.
"With a child with cancer, it's a lot of powerlessness," she said. "Aside from making sure they get medicines on time and keeping an eye out for stuff, there's not a lot you can do in the broader sense...Whether your child relapses or gets the flu, there's just so many factors out of your control, so to be able to control something in terms of fundraising and working out really helps."
What's extraordinary, Barbara said, is Lisa started taking charge early into Noah's treatment — from creating a group for families with kids going through treatment to fundraising.
"I didn't do a big fundraising push until we were almost four years into this," Barbara said. "But, from the time Noah was diagnosed, she was ready to fight Noah's illness, lead groups, raise money. She was able to do it all...She's one of the most extraordinary people I've met, if not the most extraordinary."
For Lisa, training and racing is symbolic of what kids with cancer are going through.
Noah's mantra, "don't stop, won't stop" provides inspiration during rough times.
"The whole point is to go and not stop," she said. "It's like when the kids are in treatment, Noah doesn't have a choice. He can't say 'I don't feel like going to chemo today.' So when I'm not feeling like I want to train or I don't know if I can finish it...He doesn't have a choice."
Click here to learn more about Lisa's fundraising efforts
