Leukemia diagnosis leads family to fund raise
WORTHINGTON -- Heidi Heckenlaible has never attended a Relay for Life event, but this year she will not only be there surrounded by her family and friends, she will be the guest of honor.
Heckenlaible was selected as the Honorary Chair for this year's event, which begins at 5 p.m. Friday at the Nobles County Fairgrounds in Worthington. The 16th annual Relay raises money for the American Cancer Society to fund research, education and advocacy for those living with cancer.
It was more than a year ago that the word cancer was uttered to Heckenlaible as the reason she'd been feeling so tired, with aching joints and a propensity to bruise easily.
She went to the doctor late on a Friday morning, telling her co-workers in the technology department at Minnesota West Community and Technical College she'd be back after lunch. She did come back after lunch, but it was 11 months later.
"I had a cough that was lingering, so they did a blood draw and a chest x-ray," she said of her visit to the local clinic. "When I came back into the room, there were three people there. I knew something was wrong."
Heckenlaible's blood work showed her hemoglobin level was less than half of what is considered normal. She needed a transfusion, but she also realized her anemia had to be a symptom of something.
It wasn't until after she was transferred to a Sioux Falls, S.D., hospital that she learned her diagnosis --Acute Promyelocytic Leukemia.
"I had no experience with leukemia and I didn't realize how grim my prognosis was until it came back as APL," Heckenlaible said. Her first biopsy revealed 75 percent of her cells were cancerous.
"When I look back on it now, I can't believe I let myself get that sick," she said. Yet, her initial visit to the doctor came with the prognosis of tennis elbow --that was because of the joint pain she felt.
More symptoms presented during the winter months, and Heckenlaible said she just felt achy.
"My right arm hurt from my shoulder down to my elbows, and my elbow was very uncomfortable," she said. "I work on computers, so I thought maybe there was something I was doing (wrong)."
After taking prescribed anti-inflammatory medication, Heckenlaible said the pain subsided within about a week.
"Then, a week later, my left elbow started to hurt. The leukemia cells were collecting in my joints and they collect for only about eight days," she said. "As we got closer to March, I was pretty pale and started to bruise easily."
Prior to making an appointment with her doctor, Heckenlaible did what so many do in today's world of technology -- she turned to sites like Web MD on the Internet.
"I thought I was heading toward (a diagnosis of rheumatoid arthritis)," she said, saying that on every site she visited, there was a clause at the bottom that said "or, it could be cancer." Never once did she click on one of those links.
One in 1,200
After a whirlwind of tests and an allergic reaction to a blood transfusion, Heckenlaible was transferred to Sioux Falls and wheeled into the blood disorders and leukemia wing.
"That's when it really hit me," she recalled. "There was no doubt I had leukemia."
Her husband Justin, the men's basketball coach at Minnesota West, met her at the hospital, and she was fortunate to have family nearby -- her parents live in Sioux Falls and her in-laws in nearby Harrisburg, S.D.
Heckenlaible was prescribed oral chemo medication and quickly began an 8-day regimen of intravenous chemotherapy. As part of her treatment, all of her white blood cells were killed. It's a process the 1,200 people diagnosed annually with APL must endure. The diagnosis is so rare, Sanford Sioux Falls hadn't seen a case in three years.
Because the cancer was in her blood and immune systems, Heckenlaible was basically quarantined to her hospital room for the next six weeks.
The hardest thing for her during that time wasn't treatment, it was being separated from her son, Trey, then a first grader at St. Mary's School.
"Trey wasn't allowed to come and see me," she said. "I had to have a mask on if I left my room, and if I needed testing, they brought it to my room. I wasn't allowed to leave the wing."
Heckenlaible said she "got really good at Skyping" with Trey, his first grade class, and her family and friends.
"Everyone at St. Mary's was so wonderful -- that and daycare. Those women had been constants in his life for a long time, and that was important." Heckenlaible said
Road to remission
After her six-week hospital stay, Heckenlaible was allowed to go home for two weeks, and then return for a bone marrow biopsy.
"I was in remission by that point, which is pretty standard for this type (of leukemia)," she said. "It's keeping you in remission that's the challenge for this type."
In all, she had four weeks rest before beginning a 12-week program that involved taking a low dose of arsenic trioxide.
"That's kind of revolutionary," she said, giving credit to the strides made in cancer research. This particular treatment, developed by a Chinese scientist, has shown some survival rates up to 90 percent, with the average survival rate at about 70 percent.
"Those research dollars have made a huge difference," Heckenlaible said. "Forty years ago if you had APL, the survival rate was 0 percent. Acute leukemias are aggressive cancers. Even in the last 15 years they've made great strides; and we all know that costs money. I'm very fortunate to be diagnosed in this decade."
Heckenlaible completed her treatments of arsenic trioxide in November; and will continue on an oral chemotherapy drug for the next year or two.
She has monthly doctor appointments, with blood draws every three months to monitor her health; and with the side effects of the medication, she has learned to live with feelings of nausea and fatigue, as well as "very bad" headaches.
Raising money for Relay
Heckenlaible was nearing the end of her treatment when Justin and Minnesota West women's basketball coach Mike Fury came up with a "Treys for Jays" program at the college.
"With Heidi's diagnosis, we decided to make a difference and do something," Justin said. "(We) decided to get sponsorships for the number of three's we made, and also sold T-shirts and bracelets."
"Justin has talked about the positives that came out of my diagnosis, and that's definitely one of them," she added.
The bookstore at each of the Minnesota West campuses sold T-shirts and bracelets, and the entire fundraiser earned $5,200 for Nobles County Relay for Life.
Heckenlaible said she wants to raise even more next year, and now that's she's done with her treatment, she can take a more active role in raising money.
"We want to get our students involved," she said. "The support from Minnesota West has been tremendous. It's really overwhelming and humbling. People reach out to you in a lot of unexpected ways -- it's been one of the big positives of this process."
Not only have the Heckenlaibles encouraged people to donate to Relay for Life, they've also encouraged many to donate blood.
"I didn't realize how much blood donations help," she said. "Justin became a blood donor. We're proud to say that we've gotten a lot of first time donors out of this. I didn't realize how much cancer patients use blood -- we've learned so much.
"I think Relay is an absolutely wonderful thing, but donate blood too," she added.
Daily Globe Reporter Julie Buntjer may be reached at 376-7330.