Life­line

Milwaukee Health - - HEALTH - By DAN SIMMONS

Peo­ple like Muskego pre­teen Ash­ley Ro­hde are thriv­ing be­cause of the work the Leukemia and Lym­phoma So­ci­ety is do­ing for blood cancer pa­tients.

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, and that breaks my heart,” she says.

got home from his first DAVID TAG­GART 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.”

DAN SIMMONS WRITES OF­TEN FOR THE MAG­A­ZINE, IN­CLUD­ING FE­BRU­ARY’S PRO­FILE OF JOE REED, “FROM DARK­NESS, LIGHT.”

Top: David Tag­gart (yel­low cap, cen­ter) with his Scenic Shore 150 team, Chemo Sabe Above: A Scenic Shore rider with a blood droplet on her hel­met Right: Manny Guer­rero, right, with his mom, Anna; his dad, Epi; and his older brother, Ri­cardo

Ash­ley and Laura Ro­hde style one of Ash­ley’s wigs.

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