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Robin Grapa beat death twice. The first battle she won was against bone marrow disease. Her second victory was against treatment for bone marrow disease.
“I was having symptoms for two, maybe three years. I don’t really know how long. But nobody ever realized what it was,” said Grapa.
She was an 18-year-old college freshman when routine blood work came back with abnormal results. The doctor recommended she see a specialist. That’s when she was diagnosed with aplastic anemia.
“Basically your body stops producing blood. Your bone marrow produces stem cells that turn into blood cells and your bone marrow stops doing that and you don’t have the blood to survive,” she said.
Now 26, Grapa of Oshkosh, Wis., has been in full remission for eight years.
“I’m clinically cured but I could relapse, I could get it back. I think I’m 100 percent cured. I think I beat it,” Grapa said with confidence.
“But her doctor won’t tell you that. It could come back,” said her mother Patty Laatsch.
Grapa and Laatsch on Saturday, Feb. 4, set out on a journey to celebrate life, raise awareness about bone marrow diseases and raise a $1 million for research.
The pair has been training for the hike for months.
The 5,000-mile trek will take them along the entire length of the American Discovery Trail (ADT), starting at Cape Henlopen State Park and ending at the Point Reyes National Seashore in Calif.
“I’ve always wanted to do something huge and this trail is huge, it goes from coast-to-coast and through a lot of cities. We’re really going to be able to reach out to a lot of people,” said Robin.
Today, Robin appears to be the picture of health, a picture that only a few years ago was dramatically different.
Grapa said medical experts estimate that in the United States someone is diagnosed with bone marrow disease every 17 minutes. An estimated 30,000 people a year are stricken with some form of the disease without regard for age, gender or race.
She said a person could suffer from one form of the disease, be treated and go into remission only to develop another type of marrow disease within a year.
Bone marrow transplants are the preferred method of treatment but they don’t always work. In Robin’s case, her brother’s bone marrow wasn’t a match.
“We opted for a treatment called ATG, short for antithymocyte globulin,” she said laughing at the complexity of the words that tripped so easily off her tongue.
The drug ATG is derived from horses or rabbits and is given intravenously over four days along with other powerful immune system suppression drugs.
“It kind of jump-starts your bone marrow into producing blood again. For me it just stuck and it worked. The only complication I had was major seizures,” she said.
She had to be flown to a hospital where she spent several days in the intensive care unit.
“A priest came in and read me my last rites. They pretty much thought I was going to go. I think my family pulled me through on that one,” she said.
Reflecting on what she’s been through, Grapa said she knows how others feel upon hearing they have a life-threatening disease.
“That’s what’s really scary. A lot of times many patients don’t know they’re ill and then boom, they have this fatal illness,” said Grapa.
Laatsch said she’s on the journey, which they’re calling “Our Hike,” for all of those who suffer from the disease, because she made a promise to God that if Robin lived, whatever she asked of her she would do.
Grapa said the hike would take about 8? months to complete if they maintain a pace of 20 miles a day. That puts them at the end of the journey sometime around Oct. 20.
They’ve received expert advice from hikers who have ADT experience.
“You have to plan for the mountains. You can’t get to Denver any earlier than July 1 because that’s when the snow starts to melt and you can get through.
You can’t get to the Sierra Nevadas any later than Oct. 1 because you might not be able to get through because of snowstorms,” she said.
Robin’s husband Adam and her father Keith will mail food, equipment and supplies in advance of stops the hikers will make along the way.
They expect to go through 10 pairs of shoes each in what is the equivalent of running 193 back-to-back marathons.
“Robin and I both left our jobs so that we could do this,” said Patty. The women received a leave of absence from their employers for the hike.
Patty is in real estate sales and Robin is a graphic designer for 4imprint, one of the companies along with Celgene, a pharmaceutical manufacturer, which is co-sponsoring the hike.
Robin said she considered hiking other trails – the Appalachian Trail and the Continental Divide Trail – but decided they just weren’t huge enough.
“Those are wonderful, beautiful trails but this one just seemed perfect. It is truly an American trail,” said Grapa.
She said another reason she selected the ADT is that it’s an undulating pathway, mirroring the ups and downs of her fight against aplastic anemia.
“Day to day, it will parallel what I went through when I was sick,” she said.
The team trained in northern Wisconsin’s winter environment, camping in cold weather and strength training and conditioning at a gym.
They added 30-to-35 pound weighted backpacks to their regime and walked everywhere they had to go whenever possible.
They plan to pitch a tent most nights of the hike but they have also planned more comfortable accommodations along the way.
“We have had people offer us their homes, which has been absolutely wonderful. Also, some aplastic anemia fellow patients and survivors have offered to put us up. That’s really going to push us along,” Robin said.
Follow Robin and Patty’s hike along the American Discovery Trail at www.ourhike.com. Donations to the Aplastic Anemia and MDS (myelodysplastic syndromes) International Foundation Inc., can be made through the website.
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