The Leukemia and Lymphoma Society offers critical supports to families whose worlds are turned upside down by blood cancers that often strike children.
The text that changed Laura Rohde’s life arrived on a Friday night in June 2016. She was working the overnight shift as a surgical technician. Her daughter Paige, then 13, sent a shoulders-and-up photo of younger sister Ashley, then 9. On the left side of Ashley’s upper body, where the neck meets the shoulder, was a lump. It looked bulging and unsightly. Rohde says she was concerned but not terrified – her daughter had always been healthy and was living a normal life, recently beating the boys at school in a race and prepping for an upcoming gymnastics recital – and she continued working through the night before returning to their home in Muskego.
The family visited a Saturday morning walk-in clinic at QuadMed in West Allis, their provider. Doctors diagnosed an infected lymph node and prescribed antibiotics. A follow-up appointment the next Tuesday brought more concerning news: Ashley likely had cancer and needed to be seen at Children’s Hospital the next day. Wednesday brought an appointment with an oncologist at Children’s and a CT scan. After hours of waiting for the results, the family got a new diagnosis: Ashley had lymphoma. A biopsy of an infected lymph node on Friday brought more specific and even scarier news: she had T-cell lymphoblastic lymphoma with bone marrow involvement. It was in Stage 4, the most advanced. There was a liquid mass in the girl’s chest surrounding her heart, and it was working its way into the lymph nodes in her neck.
A week earlier, the family had been preparing for her gymnastics recital. They now prepared for two-and-a-half years of grueling cancer treatment for a girl who barely understood what cancer is. Ashley was admitted to the hospital, with chemotherapy treatments to start immediately. She wouldn’t return home for at least a month. Her mother wouldn’t return to work anytime soon, taking indefinite leave to care for her younger daughter. Her husband, Bill, kept his job and its medical benefits and was able to take unpaid leave through the Family Medical Leave Act.
“It’s going from a normal life to chaos,” Laura Rohde says. “You don’t have a schedule. The cancer has a schedule now.”
Ashley was among the 173,000 Americans diagnosed with one of the many types of blood diseases yearly. They account for 10 percent of overall cancer diagnoses. They hit with urgency. As with Ashley, treatment usually must begin immediately and run for years. All phases of life get turned upside down. The hospital becomes a second home, and home becomes a place that needs to be kept nearly as germ-free as a hospital. “We’re hand sanitizer freaks,” Rohde says. “We have them in every room.” Life slows down. “It’s one day at a time, sometimes one hour, sometimes one minute,” Rohde says.
The process takes a financial toll few can handle with their own resources. Of course, “How are we going to pay for this?” takes a back seat to more urgent and important questions: How can we keep our loved one alive? How do we keep our family together? Will this ever end?
Into that maelstrom walks the Leukemia and Lymphoma Society.
“Part of our strategic plan is to get in touch with patients within the first 90 days of diagnosis,” says Liz Klug, executive director of the Wisconsin chapter of LLS. Staffers branch out throughout Wisconsin, connecting regularly with the social workers, nurses, patient navigators and other front-line medical workers who encounter those suffering from the diseases so they’re made aware that LLS exists and can help. In 2017, the Wisconsin chapter contributed $2 million in direct support to 750 patients statewide to help with an array of unmet financial needs including co-pays, travel if treatments can’t be found close to home, and some prescription drug costs. That’s up from $1.5 million the year before and marks the organization’s highest level of help in its 30-year history. The support and advocacy represent one of the two major pieces of LLS’ mission. The other entails raising money to support research to find cures and improve treatments.
The Rohde family first crossed paths with the nonprofit when LLS organized a penny drive at Muskego Elementary School, where Ashley was scheduled to start fourth grade in 2016 but had to stay home for the entire year. The relationship grew, as did the need. Laura’s mother-in-law, Shirley Rohde, was diagnosed with lymphoma a year after Ashley got her diagnosis. LLS staffer Chelsey Metzger lent a lot of in-person support to the family, especially helping Ashley through her treatment and being a resource and shoulder to cry on for Paige. She also connected them with other families who were in the same process or past it. It culminated with LLS choosing Ashley in January as one of its 2018 Honored Heroes. In a YouTube video, two other students introduce the campaign, asking viewers to help with donations to fund 500 hours of research. When they introduce Ashley, she pops up from behind the red leather couch they’re sitting on. In her teal sweatshirt, she gives a spirited, at times lighthearted testimonial about being diagnosed, saying she has just eight treatments left. They thank her, and she dives back behind the couch, off camera. Her mother says they were honored to be chosen and happy to help.
“For us, the LLS trying to raise awareness and money for blood cancer is huge, because there are kids out there dying every day.”
David Taggart got home from his first Scenic Shore 150 bike weekend euphoric about finishing but determined not to do it alone again. Offsetting the grind of pedaling over hill and dale for long stretches in the two-day, Mequon-toSturgeon-Bay trek were moments of serenity: riding the miles of boardwalk just past Manitowoc with Lake Michigan blue and sun-drenched and ever in view, passing through Point Beach State Forest near Two Rivers, enduring the climbs of farm country roads, rolling down the homestretch in Sturgeon Bay with a party waiting at the finish line. There was also the satisfaction of knowing he was pedaling for a cause dear to him – Scenic Shore is a major fundraiser for LLS Wisconsin.
On that day in 2004, he told his wife, Terry, that they needed to do it together starting the next year. One problem: their riding styles and speeds didn’t match. So they decided to ride a recumbent tandem. “Neither of us had even been on a tandem,” says Taggart, 64, who spent his career as a violist for Milwaukee Symphony Orchestra. “We heard it was a treacherous move for couples. Many never make it to the end of the driveway.”
For them, no such trouble. They took to the tandem without strife, rode the Scenic Shore the next year and every year after that. This July will mark their 14th straight year. It also marks the 14th year that Taggart has captained their fundraising team, which he dubbed “Team Chemo Sabe.” The team started with just a few riders. Last year, they had 75 and are likely to grow to 80 for this year’s ride. In that time, Team Chemo Sabe has garnered more than $400,000 in donations for LLS, and will likely cross the half-million mark this year.
Overall, the Scenic Shore ride, in existence since 1993, has generated $10 million for LLS. Money raised by Scenic Shore and events like it becomes part of the more than $1 billion in research grants the national organization has awarded to fight blood diseases in its nearly 70 years. There are a constellation of fitness-oriented fundraising efforts, from the well-established Team in Training marathon running groups to newer fundraising efforts framed around triathlons or even climbing Mount Kilimanjaro. Amid all these efforts that get people moving and get dollars flowing into LLS, Scenic Shore stands somewhat apart. It’s believed to be the largest and highest-generating event sponsored by any of LLS’ 74 branches, attracting 1,350 riders yearly supported by 400 volunteers.
Research into blood diseases has yielded vast gains but still no cure. When LLS started in 1949, diseases like leukemia were nearly 100 percent fatal. Three-quarters of a century later, the number is reversed for most of these diseases, with strong majorities surviving five years or more. But the treatment regimen remains grueling, debilitating and expensive, although new treatment strategies in recent decades have helped on that front, too.
Like many Scenic Shore riders, Taggart pedals with deep personal experience of the diseases. He lost a grandfather and two uncles to blood cancers. His own bout started in fall 2000, when he was otherwise healthy but noticed inflamed lymph nodes near his neck. He was diagnosed with stage 4 non-Hodgkin’s lymphoma. He went through a course of chemotherapy in 2001 then again when the cancer recurred in 2004 and 2005. The second course brought a newly developed chemo drug, Rituxan, a targeted therapy that kills only cancer cells and causes dramatically fewer and less severe side effects than previous chemo treatments. By spring 2006, his cancer went into remission. Last fall, it came back. He’s gone back to regular Rituxan treatments, which will continue throughout this year.
“I feel very fortunate to benefit from all the blood cancer research that’s been refining treatments over the years,” he says, “so I can go into remission without experiencing all the bad side effects I did 17 years ago.”
It’s a gospel he preaches to all he meets, and appreciates the megaphone provided by the ride. “Scenic Shore is a particularly vibrant effort in the overall picture of how LLS runs around the country,” he says. “I believe people are learning more about the missions to cure blood cancers, and people are participating more and more because of that.”
Everyone – mom, dad and the oncologist delivering the news – burst into tears. Manny Guerrero, who had turned 3 a month earlier, had childhood acute lymphoblastic leukemia. That news was just the first sobering moment for his parents: Anna, a nurse at a Cudahy clinic, and Epi, a chef. At their first clinical appointment, a social worker prefaced a statement with “I don’t want to scare you,” then continued: “Eighty percent of couples who go through this end up divorced.”
Their next shock was financial. Epi quit his job to care for Manny in their Bay View home, while Anna kept working. Still, their income perched on the brink of not qualifying for federal Social Security disability funds, which helped pay the 20 percent of bills not covered by insurance.
“In the first couple years I begged my manager not to give me raises,” Anna says. “That was really upsetting but as a parent you gotta do what you gotta do.” They scrimped wherever they could, including selling a motorcycle, and got plenty of support.
“There’s no way we would’ve been able to meet basic needs without organizations like LLS,” Anna says.
Manny didn’t finish treatment until he was almost 7. Boys go through an extra year of chemotherapy to fend off the disease’s tendency to spread to the testes. The first year was especially rough, with setbacks including infections related to the chemo treatments. Because he didn’t go into remission at the usual time, he was deemed high-risk, with higher bursts of the chemo drugs during some phases of treatment. He had a port installed in his chest for delivery of the drugs at the hospital.
When it came time to go to kindergarten, he was improved enough to attend. Anna had to visit his class and remind his classmates the importance of washing hands and caution against playing rough because of the port in his chest.
“How do you explain that to kindergartners?” she says. “My anxiety with being a nurse and him going to school was crazy. Kids are germ factories. Not everyone washes their hands. It made me very nervous.”
Fast forward to 2018. On Feb. 15th, they celebrated three years since Manny’s last chemotherapy treatment. He’s 9 years old, doing well in fourth grade. His mother and father remain married, and older brother Ricardo is doing well. Anna, inspired by the nurse practitioners who treated her son, took extra classes to become one herself. Epi went back to work as a chef. They have some holdover debt from the treatment – medications had to be paid out of pocket, with some assistance – but are otherwise on solid financial ground.
“We beat the odds in multiple ways, in multiple senses,” Anna says.
When LLS asked Manny to be Boy of the Year in 2018, he didn’t hesitate.
“He’s the biggest childhood cancer advocate you could imagine,” Anna says. “He’s like a grown man in a boy’s body.”