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Maryland's Brenda Frese, Family Tackle Son's Leukemia Head-On

Dec 24, 2010 – 12:24 PM
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Milton Kent

Milton Kent %BloggerTitle%

Brenda Frese BALTIMORE -- Four months from now, Brenda Frese would relish the chance to devise a game plan for her Maryland team to bring the Connecticut women's basketball team's vaunted Division I record winning streak to an end, if it hasn't ended by then.

But on a chilly Wednesday morning -- the day after the Huskies won their 89th straight game to pass the UCLA men's team of the 1970s -- Frese's most intricate strategy of the day was getting her 2-year-old son, Tyler Thomas, quiet enough to get attached to an intravenous tube in an examination room of the Johns Hopkins Pediatric Oncology Center.

A container of cereal proved to do the trick for Tyler to settle in to accept the chemotherapy that helps him battle the leukemia running through his little body.

Frese's Terps, off to a 10-1 start, have the mix of talented veterans and the No. 2 freshman class to play deep into March. At moments like these, though, where her son's life hangs in the balance, Frese can be forgiven for placing basketball off to the side.

"We all can get tunnel vision in our day-to-day, our work, our jobs," Frese said. "There's such a bigger meaning and so many other things going on. I'm constantly reminded of that when I walk in here and see so many sick people with worse situations than our own. You get the perspective of not taking any single day for granted."

"Our win is about beating leukemia."

Tyler has come a long way -- figuratively and literally -- since Sept. 28, when, in a whirlwind five hours, he was diagnosed with acute lymphoblastic leukemia (ALL), a form of cancer where the body produces an abnormally large number of white blood cells.

Mark Thomas, Frese's husband of five years, had taken Tyler and his fraternal twin brother, Markus, to their pediatrician, Cathy Parrish, for a visit after they each had alternately suffered bouts with what he believed was the hand-foot-mouth virus that had gone through the preschool they attended.

Though Markus' fever had been the most recent, Parrish noted that Tyler looked particularly pale and that his cuticles looked odd. Thomas told her that Tyler had been sluggish over the previous three weeks, and she ordered blood work.

Thomas and the boys returned home. While they went out for a late afternoon drive in their neighborhood, located roughly between Baltimore and Washington, Parrish called Thomas, telling him to pull their minivan over.
"We all can get tunnel vision in our day-to-day, our work, our jobs. There's such a bigger meaning and so many other things going on. I'm constantly reminded of that when I walk in here and see so many sick people with worse situations than our own. You get the perspective of not taking any single day for granted."
-- Brenda Frese

The blood test strongly suggested leukemia and Parrish told Thomas that he should get Tyler to the emergency room at Johns Hopkins Hospital in Baltimore. Immediately.

Indeed, while a normal white blood cell count in a two-year old is in the 6,000-17,000 range, Thomas said Tyler's count was around 44,000 at the time Parrish saw him, and still near 41,000 two days later.

"Our pediatrician saved his life," Thomas said. "There's no doubt about it."

Thomas' parents, who live in the area, took care of Markus, while Thomas and Frese, who rushed home early from a recruiting trip, held vigil in the hospital's emergency room, while the doctors and nurses worked to bring down Tyler's white blood cell count, with a mix of chemotherapy, some applied directly to the little boy's spine.

Meanwhile, all Tyler knew was that he wanted to go home, he wanted to "go bye-bye," according to Thomas.

"In my mind, I'm thinking, 'I do too, but I don't know how this is going to go. I don't know if you're ever going to go home.'"

After a week at Hopkins, Tyler was able to go home, and he has been treated since on an outpatient basis. For a time, he was taking a steroid that made him listless and caused him to gain weight.

Tyler's in-home treatment involves receiving an oral dose of chemo each Friday, Saturday and Sunday. He also returns to the Hopkins Pediatric Oncology Center every 10 days for an IV dose of two forms of chemo through a needle port in his chest as he did Wednesday.

Often, the dosage causes him pain in his joints and roughly once a month Tyler gets a spinal tap, which can't be a day at the beach.

Tyler's hair has fallen out and he occasionally wears a cap. In addition, he no longer attends daycare with his slightly older brother, though there's hope that if his progress continues that he can go back in the spring or over the summer.

The chemo initially did a number on Tyler's immune system and forced both Frese and Thomas to continually wash both their hands and his to keep potentially infectious germs out of his fragile system.

It's quite an ordeal for anyone, much less for a two-year-old who isn't quite able to fully comprehend what is happening to him or to fully articulate whatever pains and fears he might be feeling.

Yet, to watch him climb over the play equipment in the center waiting room and to chat up his parents, doctors and nurses is to see a child with more bravery and courage than people many times his age.

"One of the great things with dealing with this age group is despite everything they're going through, they just want to act like kids. That's what they know. That's what they are," said Julie Sussan, a Hopkins pediatric oncology nurse for 3 ½ years.

To help him feel better, Sussan and her colleagues present Tyler with a series of colored beads, as a part of a national program called Beads of Courage.

During each visit, Tyler gets beads that correspond to the procedure that he undergoes; white for chemo, blue for the visit; purple for nausea medication to cope with the chemo and black for getting injections in his needle port.

Eventually, over the three years that Tyler will be coming to Hopkins for treatments, he could end up with thousands of beads, which may turn into a bracelet or necklace and become a lasting testament to overcoming cancer.

Frese, who guided Maryland to a national title in 2006, is one of women's basketball's most visible coaches. During her pregnancy, which was announced on the team's reality show, "Under the Shell," Frese and her players made appearances on the national morning news shows.

The boys made their world debut in their mother's arms shortly after their birth in a video that aired during the telecast of the Terps' win over Duke that February day, and were shown resting in the arms of players a month later when the team found out their seeding for the NCAA tournament.

"One of the great things with dealing with this age group is despite everything they're going through, they just want to act like kids. That's what they know. That's what they are."
-- Pediatric Oncology Nurse Julie Sussan
So, as word of Tyler's illness was revealed, the women's basketball community rallied to lend support. Four starters on that national title team -- guards Shay Doron and Kristi Toliver, forward Marissa Coleman and center Laura Harper -- created the Team Tyler Foundation, to boost awareness of childhood leukemia.

And players from UMBC, Loyola University in Maryland and Purdue have presented contributions to Frese before their games this season with Maryland.

"Obviously, everyone can relate to a child when they're going through cancer," said Frese. "Absolutely, it hits home for everybody."

Patrick Brown, the director of Hopkins Pediatric Oncology Center, said ALL occurs in one of every 30,000 children nationwide.

For instance, in a population of about 1 million, there are roughly 120 newly diagnosed cases of cancer in children each year. Of that, 40 of them would be leukemia, Brown said, and the overwhelming majority of those would be ALL.

Brown, one of the team of physicians attending to Tyler, said the toddler is off to a good start in defeating his illness. He successfully navigated the phase of treatment called induction, where the body is bombarded with chemo and other drugs to get rid of leukemia cells.

Tyler has moved into what is known as consolidation, a phase, where new drugs are introduced to clear out cells that might have been resistant to the original drugs.

That treatment will go on for a few months, before Tyler moves into the maintenance phase, where his visits to the clinic become less frequent and he'll take lower intensity oral medicine at home, Brown said. His hair will grow back and he'll be able to go back to school.

Maintenance is the longest phase, lasting about 2-2 ½ years, but at the end, Tyler could become a part of the 80 percent cure rate for childhood ALL patients.

"That doesn't change the fact that there is uncertainty in this business and whole lot of anxiety that goes into this and there's no guarantee that each of these steps is going to lead to ultimate success," said Brown, a West Point graduate.

"But, at each step of the way, he (Tyler) has gone the favorable route."

And because Markus is a fraternal twin, he is no more genetically predisposed to contracting leukemia than a normal child, Brown said.

Meanwhile, life in the Thomas household is settling back into something resembling a normal routine. Frese is not only coaching a top 25 team, but is maintaining her reputation as a fierce recruiter. Indeed, hours after Tyler's visit, Frese and Thomas were off on a drive to Pennsylvania to see a high school player, while Thomas' parents and their nanny watched the boys.

"It's very hard,' Frese said of juggling home and basketball. "You want to be in a lot of different places at once. But at the same point, life continues on."

"It's a delicate balance between work and home. I know what I'm doing with my job is ultimately helping our family. And the great thing is when I'm out recruiting, he's in great hands with people who love him and support him. That's reassuring when you have so many great people involved."

This present group of Maryland freshmen could add a national championship banner or two or more to the rafters of Comcast Center before they leave.

But the real celebration at Brenda Frese and Mark Thomas' home will come in five years. That's when Tyler would be officially out of the woods and cured of leukemia.

"We're a good chunk of the way through that (initial treatment) and everything's been going great," Thomas said. "We're hoping to get to that five year finish line and have a big party one day."

For information on how to contribute to the Team Tyler Foundation, send an e-mail to: teamtylerfoundation@gmail.com

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