Community rallies to support 'amazing' La Crosse family during cancer ordeal

Nov. 27—The amount of adversity Rob Leitz has faced in the past three years would bring many to their breaking point, his series of devastating health issues leaving him weak, injured and fighting for his life.

Rob and his wife, Cindy Dolesy Leitz, are not superhuman. They have sobbed, spent long stretches in the hospital and prepared for the worst. And yet, despite limited visits with their beloved children and grandchildren as the pandemic lingers and the upcoming Christmas holiday to be celebrated from a hospital bed, they have gratitude — and hope.

The La Crosse family's ordeal began in 2018 when Rob, who worked in a factory, fell on the job and went to the hospital for his injuries. During his stay he was discovered to have immune thrombocytopenic purpura (ITP), a rare blood disorder that causes extremely low platelet counts. Side effects include severe bruising and bleeding.

"It was a huge shock," says Cindy, internal medicine residency program specialist at Gundersen Health System. "He was bruising a lot, but in factory work that is expected."

Six months later, Rob, still receiving transfusions for his ITP, returned to work only to suffer another fall, this time causing his lung to collapse and breaking seven ribs. Due to his declining health and need for rehabilitation, Rob retired early.

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He spent extensive time in the hospital, experiencing multiple spontaneous hematomas, and averaged 1.5 visits to Gundersen a week for his care for over a year. In February 2020, he experienced a large spontaneous bleed in the abdomen and was put on high dose steroids. Infections developed, biopsies were conducted and by the time Rob left the hospital, the coronavirus pandemic was manifesting locally.

Last July, shortly after Cindy suffered the loss of her brother, Rob received a devastating diagnosis of primary myelofibrosis, a blood cancer, after immature blood cells, or "blasts," were found during routine lab tests and a bone marrow biopsy was conducted.

"We knew he wasn't doing well," Cindy says. "He just wasn't himself (and treatment) just wasn't working. So as shocking as it was, it wasn't."

The cancer has around a five year life expectancy rate, according to Clinical Advances in Hematology & Oncology, and their doctor, Cindy recalls, was honest with the couple, saying, "I don't want to give you no hope, but I don't want to give you false hope."

Rob was told he would need an allogeneic stem cell transplant, the only possible cure for his condition, though the procedure has its own risks and chance for mortality.

"He's an amazing champ," Cindy says of Rob. "At first it really took him down. He was really depressed. But it's his only shot. He's like, '"I want to do this. I want to fight for my grandchildren and my family.' His grandchildren mean everything to them."

Around a month ago, the Leitz's learned there was a near perfect bone marrow donor match through Bethematch.org, though they won't know the donor's identity, should the individual wish to share, until two years post transplant.

If the family should have the opportunity to speak to the donor, Cindy, breaking into tears, says, "I'd bawl, because I'm just so grateful to at least have the chance to try to save his life."

The couple have had limited opportunities to see their two adult children Ashley (Andy) Kuse and Garett (Sara) Leitz, and their four grandchildren, Aiden and Ava Kuse and Garett and Bryce Leitz, during the pandemic, with Rob at high risk for severe COVID complications. They spent Thanksgiving solely with Cindy's mother as a precaution.

On Dec. 9, the couple will travel to U.W. Madison so Rob can begin conditioning therapy for several days, followed by radiation and then his transplant, scheduled for Dec. 14.

How long Rob will remain in the hospital "is really up to his body," Cindy says, with complications expected. Cindy plans to stay at a nearby hotel for the duration of Rob's hospitalization, which could range from five weeks to three months or more.

Complications could occur for up to two years out, with "a lot of ups and downs," Cindy says, and they were warned if Rob develops a fever reaching 104 degrees, "we have one hour to get to the hospital to start antibiotics."

With Cindy needing to take extended time off from her job at Gundersen, and growing expenses including gas, lodging, food and medical fees not covered by insurance, her coworker Yacki (pronounced "Jackie") Hayashi-Tanner has set up a Go Fund Me page for the family. A recent graduate of Gundersen's internal medicine residency program and now a D.O. in Gundersen's hematology and medical oncology department, Hayashi-Tanner calls Cindy "A confidante and a second mother to many of us."

"Cindy is easily one of the most selfless individuals you will meet in your life, always making you feel heard and ensuring your wellness is at the forefront," Hayashi-Tanner writes on the Go Fund Me page. "No one would ever guess that her equally amazing other half, Rob, has been dealing with significant medical issues since 2018."

The fundraiser has raised over $33,000 of its $50,000 goal, which Cindy says "We never could have imagined." Initially hesitant to accept the funds — "We didn't want to ask for help" — every time they see the amount go up, "We bawl," Cindy says.

Cindy calls Hayashi Tanner "a very dear soul, a very special young lady," and is incredibly grateful to her and those who have rallied around them, including financial donors — over 140 so far — friends, family, their beloved children and her Gundersen coworkers, who have been caring, understanding and accommodating, she says, and quick to step up during her absences.

"They've just been so amazing to us," Cindy says of their ever-widening circle of supporters. "It is just so overwhelming, the amount of support we have. We found we are more loved than we ever could have imagined. You feel like you don't deserve it. It's incredible. It's really mind boggling."

As hard as it has been, and will continue to be, Cindy says, "I can't complain. For everything that Rob is going through, to sit back and say 'Why me? Why us?' Well, why not us? We don't wish it on anybody, ever."

While many families will spending the holidays with extended family, cozied up and exchanging gifts, Rob and Cindy will be in the hospital, a successful treatment their Christmas wish.

"It's okay," Cindy says of sharing the holiday in a sterile hospital room rather than by the fireplace. "Because the hope is it will give us more time down the road. Rob is an incredible human. He is a really good person. We can't thank people enough for being on this journey with us. We're just so grateful."

To donate to "Rob Leitz's Bone Marrow Transplant Fundraiser" on Go Fund Me, visit shorturl.at/loAH1

Emily Pyrek can be reached at emily.pyrek@lee.net.

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