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Lilly Timmerman stays strong

The Hawk Eye - 6/30/2018

June 30--When 10-year-old Lilly Timmerman returned home from a bone marrow transplant a year ago, she was relieved.

She was also determined. The North Hill Elementary fifth-grader won her fight against leukemia, but the battle for her health and well-being was far from over.

"It was exciting. I got to do a lot more things (at home) than I did in the hospital," Lilly said.

Just not nearly as many things as she would have liked.

It takes the body about a year to rebuild its immune system after a bone marrow transplant, and Lilly had to spend that year in isolation, at home. On the rare occasion she did leave, she had to wear a mask so thick it could make an adult pass out if they over exerted themselves.

But much like the slogan her family used during Lilly's battle with leukemia -- "Stay Strong for Lilly" -- Lilly stayed strong by feeding on the support of those around her. Her North Hill teachers tutored her online, and she did her lessons at home. Her mother, Maria Timmerman, quit her job to stay with Lilly, both in the hospital and at home.

"I just pulled up a cot," Maria said. "Everything else went out the window."

Lilly's year of self-imposed house arrest afforded her a lot more freedom than the 30 days of post-transplant isolation she endured at the University of Iowa Children's Hospital in Iowa City. But not the kind of freedom a 10-year-old desires.

That freedom came last week, on the one year anniversary of Lilly's bone marrow transplant. Now she can finally be around people, without wearing a mask.

"It's fun, playing with your friends," she said.

Lilly can pretty much do whatever she wants now, within reason. The 14 medications she used to take have been whittled down to two -- a vitamin and a pill for stomach aches. Her monthly hospital visits have been spaced to every three months.

Best of all, she will be returning to school for the first time since she was diagnosed with leukemia on Christmas Eve of 2016. She started taking half-day summer courses last week, and is still getting used to being around other people again.

"You don't know what it's like to be in isolation for a year until you've done it," said Maria Timmerman said.

Maria was with Lilly every step of the way, from regular hospital visits to a month of isolation in a pressurized hospital ward designed to keep out infection. It didn't work all the time -- Lilly suffered from multiple stomach infections while she was there -- but it helped keep her alive.

It was the bone marrow and a minor miracle of genetic luck that saved Lilly's life.

None of Lilly's relatives were a bone marrow match, including Lilly's fraternal twin sister, Josie. But an anonymous bone marrow donor from Germany proved to be a rare, 100 percent match. Most of those waiting for a bone marrow transplant aren't as lucky.

"Without the bone marrow transplant, we wouldn't be here," Maria Timmerman said.

Maria was awestruck by the community's response to Lilly's plight. "The "Stay Strong for Lilly" phrase became a mantra around Burlington, attached to a several fundraisers and benefits to help cover medical expenses.

"It's amazing how everyone pulled together," Maria said.

Lilly's family treated her June 23 transplant anniversary as a kind of second birthday, celebrating her newfound freedom. She gets to swim again, and play basketball. After suffering through chemotherapy that temporarily robbed her of her hair, Lilly gets to be a kid again.

And what kid wouldn't want to go on a Disney cruise? Thanks to the Make-A-Wish Foundation, Lilly and her family are going next week.

"She's been really excited," Maria said.

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(c)2018 The Hawk Eye (Burlington, Iowa)

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