Preslie Mantsch, her father Tom and her mother Nikki, attended the Iron River portion of the “Pedaling for Preslie” bicycling tour on Aug. 26. Local residents John Kolbas and Bill Mellstrom supported the Mantsch family by raising funds with a bike tour across the Upper Peninsula. See page 2 for more.
By Allison Joy
IRON RIVER/MILWAUKEE — In a lot of ways, 3-year-old Preslie Mantsch is your typical Yooper. She enjoys fishing and driving her side-by-side around the yard. She’s eager for any excuse to take out her toolbox (though unfortunately, banging on Dad’s motorcycle is a no-no).
In a lot of ways, Preslie is far from typical. She draws her own blood and knows how to flush the port near her shoulder where her feeding tube enters her body. She’s had to learn to walk twice and spends more time in a hospital than any toddler should.
“She can’t play like a normal 3-year-old child can,” said Tom Mantsch, Preslie’s father. “It’s kind of robbing her of her childhood.”
Nikki and Tom Mantsch found themselves living every parents’ nightmare when, in April, Preslie was diagnosed with acute lymphoblastic leukemia, a form of blood and bone marrow cancer that would, at minimum, require over two years of chemo treatments for their little girl.
It started with a limp -- odd, but not necessarily cause for immediate concern. Preslie’s limp persisted for a few weeks from February into early March. X-rays revealed no visible fracture, and the Mantsch family was told that Preslie had probably strained a muscle and would recover on her own.
Preslie continued to limp. Her parents started to notice petechiae (little red dots on the skin), and that Preslie seemed to be bruising more easily. She reverted to crawling, instead of walking.
Back at the hospital on April 28, this time both Preslie’s legs were X-rayed, as well as her hips and ankles. Nothing. Then, some bloodwork revealed that Preslie’s platelets, cell fragments created in the bone marrow to form blood clots or prevent bleeding, were critically low: A normal range is 150,000-400,000 per microliter of blood; Preslie’s were at 15,000.
Tom and Nikki were directed to pack Preslie into the car and immediately head for Children’s Hospital of Wisconsin in Milwaukee. When they arrived at the emergency room late that evening, sheriff’s officers guarded the door and medical professionals greeted them in full PPE. Restrictions put in place to prevent the spread of COVID-19 meant that only one of Preslie’s parents could accompany her into the hospital.
Tom kissed his girls goodbye and retreated to the parking lot, where he would spend a grueling night in his truck, staring at the ER door awaiting news on his daughter.
Nikki’s evening was a blur. Preslie had more bloodwork drawn. At some point, she spoke with a couple of oncologists but, “I guess you just don’t put two and two together,” in that situation, she said. Doctors officially admitted Preslie for observation and scheduled a bone marrow biopsy.
The next day, a doctor sat Nikki down and called Tom to inform Preslie’s parents that their young daughter had cancer in her blood and bone marrow.
“Sitting in a parking lot and being told your daughter has cancer by phone was just crushing,” Tom said.
Nikki went through a brief period of denial. Her oldest daughter, Harlie Melstrom (now 15) and one of two from a previous marriage, had a leukemia scare when she was around the same age as Preslie. Nikki traveled with her to Mayo Clinic in Rochester, Minn. for a series of tests that ultimately determined Harlie was misdiagnosed and actually had mononucleosis, a rather common and non-lethal viral infection, not leukemia.
“I asked them a million times, ‘Are you sure? Is it an error? Could there be something else?’” Nikki said. The bone marrow biopsy confirmed it: Preslie’s results revealed she was “98 percent full of cancer,” Nikki said.
Though Nikki focused on remaining strong for Preslie, she still found herself biting back tears as Preslie tried to comfort her mother: “Mommy, don’t cry. I’m OK.”
So started an exhausting and chaotic routine of Nikki driving back and forth between Milwaukee and Iron River for Preslie’s appointments. She took leave from her job with Dickinson Iron District Health Department.
Given the family’s mounting medical expenses and limited access to the hospital, Tom has been forced to spend a lot of time away from his family, focused on earning enough to provide for them all and pay for Preslie’s treatments. He works a few jobs: one as an advance EMT for a critical care ambulance in Iron River, another as a part-time fireman in Iron Mountain, and a third gig teaching fire safety and emergency care as an adjunct professor at Nicolet College.
“Being a father, a medical care provider and a first responder -- knowing you can’t even be there for your own family, it’s hard,” Tom said, adding that he also worries about exposing himself and his immune-compromised daughter to the coronavirus.
Acute lymphoblastic leukemia is a fast-acting form of cancer that, if not treated, can be fatal within months -- though the survival rate is high among children, roughly 90 percent when treated. It starts in the bone marrow targeting immature lymphocytes, a type of white blood cell, and the leukemia cells then travel quickly to the blood stream. It’s also common for them to invade the lymph nodes, liver, spleen, brain and spinal cord.
There are three main phases to Preslie’s treatment that span two and one-quarter years at minimum: induction, consolidation and maintenance. In the initial phase of induction, Preslie was put on steroids in addition to multiple rounds and forms of chemotherapy, the goal being remission with no detectable levels of cancer.
Steroidal treatments caused Preslie’s face to puff up. In addition to taking oral chemo medication, she was also in Milwaukee, often more than weekly, for treatments, including about seven done intrathecally -- where chemo is injected into the cerebrospinal fluid via a spinal tap -- in addition to regular intravenous chemo treatments..
Preslie suffered painful, serious side effects to the drugs needed to save her life -- leading to additional hospital visits. Over the course of three months, these included pancreatitis and septic blood due to infection. She lost her hair, and excessive nausea and vomiting ultimately led to the feeding tube. Preslie spent her third birthday, on May 31, alone in a hospital with her mother.
In late May, at the end of her induction phase, Preslie had a second bone marrow biopsy that brought more unsettling news: Even after the heavy schedule of treatments, there remained detectable levels of cancer in her bone marrow -- making her a high-risk case requiring more intense drugs for her ongoing chemo treatments.
After months of perseverance, it was in that moment that the full gravity of the situation truly hit Nikki.
“It really, really hurt,” she said. “Like, this is real, and she still has cancer and we have a really long road ahead. It took me personally a good month to truly accept everything and realize this is how life is going to be for her.”
Preslie moved into the consolidation phase of her treatment, with a wider array of treatment drugs and without reaching remission. This meant additional months of uncertainty and frequent six-hour car rides to the hospital for the Mantsch family. Tom is originally from Milwaukee with family still in the area. It’s a blessing for Nikki, Preslie, her two older sisters and other family who have been able to stay there when traveling for Preslie’s treatments.
Tom and Nikki tried to provide their daughter with some semblance of normalcy. Preslie’s high risk for infection made it difficult to allow their daughter to play like a normal child. And Preslie was aware of her situation enough to know that she had to be careful, often asking if it was OK to play outside or promising her mother she wouldn’t fall.
But there were reasons to celebrate. In mid-July, Preslie started walking on her own again for the first time in over two months, with the help of a walker.
“I think it was better to see her take her first steps the second time than when she was a baby,” Tom said. He was also eventually allowed to accompany Nikki and Preslie into the hospital for certain procedures and discussions.
Also, a swell of community of support rose around the Mantsch family. Donations began to pour in, and Nikki’s sister, Melissa, took over fielding calls from concerned local residents looking to host fundraising events or sell crafts, like T-shirts and bracelets, to raise money.
Thirty two-person teams participated in the Iron River Country Club’s golf scramble fundraiser. Jim Brolin donated 75,000 can tabs. A motorcycle rally in Green Bay donated a new swingset for Preslie. The Iron County Youth Market Livestock Council raised $14,000 in 20 minutes by selling a club hog during a virtual auction. John Kolbas and Bill Mellstrom, two local residents, raised donations by biking roughly 320 miles across the Upper Peninsula for what they called “Pedaling for Preslie.”
“We all have our own niche,” said Kolbas, a day after completing the ride. “What I see is people came out and started giving to help Preslie, giving their niche or their passion or their love.”
Nikki said it’s impossible to list all the people whose generosity have helped her family weather these challenging times.
“It’s overwhelming,” Nikki said, both eager to express gratitude but hesitant to list specifics lest anyone get left out. “I don’t even have words to say, because it has made things so much easier ... I’m able to focus more on Preslie, rather than [how to pay for] each trip.”
On Thursday, Aug. 27, the results came back from Preslie’s third biopsy. It was what Tom and Nikki had been waiting to hear: Finally, no detectable traces of cancer.
“It was just like a weight was lifted off our shoulders,” Nikki said, “You just feel that relief.”
And yet, while they’ve reached an important milestone worth celebrating, the Mantsch family’s road ahead remains long and difficult. Preslie’s results put her at the end of phase one of her treatment. She’ll now move into the longest and most intense phase of her treatment: maintenance.
While Preslie’s results shows no signs of cancer, that does not mean her cancer is gone -- only that her levels are too low to be detected. And because Preslie didn’t reach remission by the end of phase one, she remains a high-risk case.
For about the next six months, Preslie’s tiny body will be bombarded with chemo to further reduce the number of cancerous cells. Multiple drugs will be combined to prevent remaining leukemia cells from developing resistance to treatments. In addition to oral and IV treatments, she’ll continue the intrathecal treatments that require a spinal tap.
“She could still have cancer cells,” Tom explained, “we just can’t detect it.”
They’ll also need to deal with ongoing side effects as Preslie is given a wider variety of chemo drugs as part of her treatment regimen. For example, a given drug may increase her survival rate to 90 percent, while also putting her at risk for kidney failure.
“It’s really scary,” Tom admitted, “trying to pick the lesser of all the evils.”
So, with the good news comes the realization that Preslie’s treatments are about to get even more challenging than they have been these past few months. Yet at least now, there is an end date. On September XX, 2022, Preslie will complete her chemo treatments and be able to look toward a more normal life.
“She should be able to ring that bell and walk out of that hospital and be free,” Nikki said. “I know it’s a long way away, but to have a target date in mind, that’s at least something you’re working toward.”
On a recent afternoon at home, Preslie sounded like any other 3-year-old, though this time her toolbox had been replaced with a doctor’s kit. She pulled out a disposable stethoscope (given to her at the hospital) to check Nikki’s heart rate. She instructed her mother to “say aah” because “it’s time to take your temperature.”
As Preslie, apparently satisfied with Mom’s results, turned her attention to a row of blue teddy bears awaiting their turn with Doctor Preslie, Nikki watched her daughter.
“She has way more knowledge in that little brain of hers than any other kid her age,” she said.
In a lot of ways, Preslie Mantsch is your typical Yooper. In a lot of ways, she’s anything but.