‘It Made Me Feel Like I Can Do Anything’ - The Missourian: Feature Stories

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‘It Made Me Feel Like I Can Do Anything’

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Posted: Saturday, August 16, 2014 12:00 pm

Wearing two bronze medals around her neck and a big smile across her face, 8-year-old Gracie Greenhoff has a look like she can overcome any challenge.

She feels that way too since coming home from the Transplant Games of America held July 11-15 at Rice University in Houston, Texas.

“I think it was a happy moment because it made me feel like I can do anything,” Gracie remarked.

If you’ve never heard of them before, the Transplant Games of America are like many other multisport, Olympic-style tournaments. They are held every two years exclusively for organ and tissue recipients and living donors.

The daughter of Jenn and Ryann Greenhoff, Union, Gracie was just 20 months old when she had a kidney transplant.

She was born with multicystic dysplastic kidneys — one that didn’t work, a second that didn’t grow to its full potential and both with cysts, her mom said. Gracie had surgery to remove the nonfunctioning kidney and, when her remaining kidney quit, she was placed on the transplant list.

“Then a 17-year-old died and gave his kidney to me,” said Gracie, smiling.

After the transplant, Gracie twice developed post-transplant lymphoproliferative disease (PTLD), which is a type of cancer that behaves like an aggressive lymphoma.

“The Epstein-Barr virus is what carries it,” Jenn Greenhoff explained. “To you and me, it’s just like a cold. Our numbers are at zero. Hers were at 7 million. So they started chemo and some other infusions.

“We lived in the hospital for like a month and a half. ”

Gracie wasn’t even 3 years old yet.

The treatment pushed Gracie into remission, but she has blood drawn weekly to make sure the PTLD isn’t coming back, Jenn Greenhoff said.

On top of that, Gracie’s new kidney has never functioned at its best. Doctors called it “acute rejection,” said Jenn Greenhoff, noting at one point there was a concern that it was chronic rejection, but that was ruled out.

“Still, her kidney is only at 50 percent . . . and that was two years ago,” Jenn Greenhoff said.

Doctors have told the family that Gracie’s kidney could quit functioning any time, and when it does she will need a second kidney transplant.

Outside of the kidney problems, Gracie has had a spinal fusion and her doctors are talking about starting her on growth hormone shots because she is so small for her age. Her growth chart has stayed the same for years, said Jenn Greenhoff.

Gracie doesn’t let it bother her.

“I’m fun size!” she remarked with a smile.

Gracie said she mostly feels happy, but her body does feel tired sometimes, mostly on days that she gets infusions.

She has to take 11 medications a day, Jenn Greenhoff noted. She takes them all at once, all in pill form.

“I just take two handfuls and stuff them in my mouth and do it,” said Gracie, who just started third grade at Beaufort Elementary.

The Transplant Games

This was the first year that Gracie has been able to compete at the Transplant Games. In previous years, she was never healthy enough to go, her mom said.

Gracie competed in the 8- to 10-year-old age category, even though she’s the size of a 5-year-old.

She entered four events — long jump, running, 25-meter swim and cornhole tournament. She won bronze medals for swimming and cornhole.

“Cornhole was some trouble for me, but I catched up, and I won it,” Gracie remarked, proudly.

Jenn Greenhoff thought Gracie might have some trouble with the swimming contest because in practice, she was having trouble getting her breathing right. So Mom did some impromptu coaching.

“She said to watch the adults, and do what they do,” Gracie recalled.

“She was having trouble breathing and getting a hold of her breath . . . so I said, ‘Lets watch the adults, see how they swim, turn their heads (to get a breath), swim, turn their heads,’ ” Jenn Greenhoff explained.

“When the gun went off, she dove in — she barely knows how to dive — went under the water, came up, swam, turned her head, swam, turned her head, and got third place.

“And it was milliseconds between her and the second person,” Jenn Greenhoff remarked. “They were just taller.”

Gracie competed at the Transplant Games as a member of Team Transplant St. Louis. She was one of 12 athletes and several donor families and supporters who attended as part of the group.

Mid-America Transplant Services (MTS) is a sponsor of Team Transplant St. Louis and the Transplant Games of America, helping athletes nationwide show the life-saving benefits of donation and transplantation.

The medals at the 2014 games featured the face of Anabel Stenzel, an organ recipient who passed away last year. Anabel’s sister competed in the swimming at this year’s games and won gold, Jenn Greenhoff said.

Making Connections

The purpose of the Transplant Games of America is to raise awareness about the need for more organ and tissue donors, but the Greenhoffs found the games also filled an emotional need among the participants and their families.

“When people were swimming, there were a couple older people who couldn’t swim as fast as everybody else, but they still did it,” said Jenn Greenhoff. “And so we would all cheer them on until they made it to the finish.”

She believes winning isn’t the biggest part of what the games are about. It’s about seeing people who have struggled physically overcome those odds and accomplish these things, she said.

Gracie agreed. She had a lot of fun competing in her four events, but making new friends was the best part of the entire experience, she said.

“It was really fun,” Gracie commented. “At first, I was pretty scared, because I didn’t know what was going to happen . . . but I got to make new friends, and that made me not so scared . . . it made me happy.”

It was nice, too, to be around so many other children who’ve grown up with similar experiences as herself, said Gracie.

Her family felt the same way. Even from the opening ceremony, Jenn Greenhoff said it was clear the games were less about competition and all about support.

“It was no competition — it was everyone cheering for everyone. It’s being in an arena where people understand you and the struggles,” she said, with tears in her eyes. “You don’t have to explain. You just say, ‘kidney’ or ‘liver’ or whatever.”

The connections are real, Jenn Greenhoff added, recalling how a lady the family met on the bus to the swimming competition took a video of Gracie competing and gave it to the family.

“She said she just felt like she needed to do it for us,” Jenn Greenhoff said.

The family is hopeful that they will be able to attend the 2016 Transplant Games in Cleveland, Ohio.

“As a parent who’s never really been into the whole support group thing, we got a lot closer to our team, and friends that we already had on the team, and for me, it was seeing everybody on the other side,” said Jenn Greenhoff.

“Being around that is just something you can’t explain. It’s one of the most difficult emotions I’ve ever felt. You’re relieved, you feel like you’re at home, and you’re literally family with everybody.”

For more information, people can visit www.TransplantGamesOfAmerica.com.

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