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Carson Toepfer of U-D Jesuit fights blood disorder

By: Tom Markowski, November 27, 2016, 7:46 pm


Detroit – Now that the leftovers have been eaten, the turkeys are safe once again and all of us can get back to our normal routine, let’s not forget what we need to be thankful for – life.

Carson Toepfer didn’t forget. If fact he’ll never forget this Thanksgiving, the weeks leading up and those to follow.

Toepfer, 16, is a sophomore at U-D Jesuit. He’s not attending school right now. He has no choice.

On Oct. 30 Toepfer was admitted to Beaumont Hospital in Royal Oak. He had complained of being fatigued and, on this day, it had reached a point where it just didn’t seem normal.

Toepfer was, by all accounts, a normal student. He’s a good student and enjoys participating in sports. As a freshman last season he made the varsity lacrosse as a midfielder. He also played freshman football and this season he was on varsity as a linebacker and running back, and he played on special teams. Again, Toepfer is average size, 5-10 and 174 pounds, for a person his age. He’s quite proficient as a lacrosse player and has aspirations of playing in college. He’s an above average football player, too, having stated two games this season because of injuries and coach Oscar Olejniczak said he expected Toepfer to move into the starting lineup next season at linebacker.

That might have to wait. Anything is possible but Toepfer has more immediate concerns.

Toepfer was diagnosed with aplastic anemia, a rare blood disorder. It’s so rare that fewer than 1,000 in the U.S. have been diagnosed with it. It’s not something doctors commonly look for.

Toepfer spent a week in hospital and for four days he received treatment to kill his immune system with the hope of stopping the disease from attacking his bone marrow. He was released from hospital but with many restrictions. Because his immune system is weak he has limited contact with anyone, outside of his immediate family, for fear that he will contract other illnesses.

He takes medication daily, 20 pills. Toepfer takes some in the morning, another dose at lunchtime and a third around 9 p.m. Three days a week he goes to a clinic to have his blood cell count checked and at least once a week he has a blood transfusion.

Toepfer said the doctors told him it might take three months before there are signs that the medication is working.

He began taking the pills two weeks ago so, as much as he’s gone through, his journey is still in its early stages.

“When I went to the hospital, I really didn’t know what to expect,” he said. “At first they thought it might be anemia or leukemia. My parents and I were waiting for the results and it took over two to get them. I kind of knew something was wrong then.”

To combat this disease, the ideal treatment is a bone marrow transplant from a sibling. Unfortunately, his sister, Reilly, is not a good match.

The second option is what Toepfer is going through now – drugs. If the second doesn’t work a third option is a bone marrow transplant from a donor.

As unlucky Toepfer in contracting this disease, he’s also fortunate that he did not receive a hard hit to hit head while playing football. The consequences could have been much worse.

“(The doctors) couldn’t believe it,” Toepfer said. “I played every game, I didn’t miss one, and didn’t take a big hit.”

Olejniczak said Toepfer is a quite person and not prone to complain, about an injury or anything else, but there was one incident that did raise an eyebrow.

“He was feeling tired, and he got some bruising,” Olejniczak said. “No one thought much about it. Then after the playoff game against Oak Park (Oct. 28) he said he was tired and had trouble breathing.”

That was the first alarm. The bruising took place in midseason and came in the game before U-D had a bye week. Toepfer said he wouldn’t have been able to play had there been a game that week.

Looking back, yes there were signs but who would think Toepfer would be stricken with a blood disorder?

Oddly enough there is a teacher at U-D, Darrin Flowers, who was diagnosed with aplastic anemia in May of 2012 when he was 29. Flowers continues to receive treatment, is in remission and he received some good news recently about his treatment.

“I was in the hospital for two, two and half weeks,” Flowers said. “In May of 2013 I had a relapse. I went back in the hospital for 10 days for treatment including (blood) transfusions.”

Flowers, 33, said he and his physician discussed weening Flowers off the medication, which he takes twice a day.

Flowers teaches geography and civics, and had Toepfer as one of his student in junior high. Flowers has met with Toepfer a few times since Toepfer received his diagnosis. Flowers said he talks to Toepfer about the process and to remain positive.

“”I really gave him some tips on eating,” Flowers said. “I ate a lot of salads but now I just eat spinach and kale. I told to insert more dark green vegetables into his diet and stay away from fatty foods, which would block the flow of blood.

“It’s the fear of the unknown. When I was diagnosed I thought it was strep throat. It was going around at that time.”

For Toepfer, the waiting game continues. He said he feels OK but that it it’s his immune system that he must monitor closely.

To keep up with his school work he goes online and has met with teachers, after school when the majority of people are gone, to set up a plan so he can get through this semester and he’s keeping his hopes high that he can return to school in January.