When death came knocking, all Makayla Claussen could think about was living long enough to earn her college degree.
More than 4,800 students will graduate during UT commencement exercises this week.
Claussen’s steep climb to graduation and the drive she has demonstrated to get there will make Saturday’s ceremony cause for a Big Orange celebration.
Growing up, the Nashville native was a star soccer player, honors student, and homecoming queen who never got sick. But in April 2013, during her sophomore year at UT, she made three trips to the emergency room with a temperature of 106. Doctors diagnosed her with mononucleosis.
A few weeks later, on Claussen’s third trip to the ER, an oncology doctor happened to be on call and ordered blood work. After reviewing her results, the doctor told her she needed to summon her parents because her white blood cell count was dangerously low.
Once Claussen’s parents arrived, the doctor told them she had secondary hemophagocytic lymphohistiocytosis (HLH). The rare and potentially fatal autoimmune disease occurs in one out of 1.2 million people worldwide.
Claussen needed to be transported by ambulance to Vanderbilt Medical Center in Nashville.
“I remember my heart was racing in the ambulance and I kept feeling hot one minute and then cold the next,” said Claussen. “They had to stop and get ice to try and keep my body cool.”
Once Claussen arrived at Vanderbilt, her body crashed. She coded four times and had to have her heart shocked. With a room full of doctors fighting to save Claussen’s life, even her parents were asked to clear the room.
“That’s when I knew how serious it was,” said LeAnn Claussen, Makayla’s mother. “We didn’t expect her to make it through the night. Her fever was 106. Anything higher than that is when your organs start to shut down.”
Claussen spent the next ten days in the intensive care unit, including four days on a ventilator.
After Claussen woke up, she was told she’d been receiving chemotherapy to treat the HLH, which had been caused by a severe reaction to the Epstein-Barr virus, which causes mononucleosis, and is the most common virus associated with secondary HLH.
“It’s like mono on steroids,” said her mother. “If HLH is not properly diagnosed it can be fatal in two months. We were a day or two away from losing her.”
A Steep Climb
The medical team at Vanderbilt worked with Cincinnati Children’s Hospital, which is considered a world leader for HLH treatment.
As if fighting a rare disease wasn’t enough, Claussen learned from her next round of blood work that she also had cancer—stage four non-Hodgkin’s T-cell lymphoma.
Claussen received chemotherapy, blood transfusions, steroids, antibiotics, and two central line placements.
“In early May, Makayla was sent home for the first time in since her diagnosis,” said her mother. “She’d be weaned off the steroids and sent home but would get sick again and end up back at Vanderbilt. This back and forth happened three times.”
On May 31, while getting ready to attend a church fundraiser to help pay her medical expenses, she spiked a 104-degree fever.
She had relapsed again.
“Even with treatment, remission is temporary because the disease always returns,” she explains. “Every time they weaned me from the steroids, the HLH would come back.”
Claussen was told she needed a stem cell transplant to save her life.
Only One Among Millions
Her brother, Aaron, was tested but wasn’t an exact match. Her medical team then reached out to Be the Match agency, a global registry with nearly 27 million potential donors.
Two potential donors matched Claussen, but one was automatically eliminated. Her doctors needed a donor who had experienced mono as a child and whose stem cells could fight off the virus if it ever returned.
One potential donor remained—out of 27 million people on the registry.
Claudia Reverts, in Emden, Germany, lived 4,000 miles and an ocean away.
Reverts agreed to donate, but Claussen had to be in remission and mono-free in order to receive the transplant.
Claussen’s mother said doctors administered an extreme round of chemotherapy to wipe out her daughter’s immune system in preparation for the procedure.
Meanwhile, across the Atlantic, Reverts was already devoting thirty hours of her time over a month to give her stem cells to a complete stranger.
On August 23, 2013, just four months after her initial diagnosis, Claussen received Reverts’s stem cells.
Most patients spend two weeks in the hospital after a stem cell transplant. Claussen stayed more than three months, with sixty days spent in complete isolation.
“It was a roller coaster for the next year,” said Claussen. “I had some complications after the transplant. I gained a lot of weight because of the steroids, lost some of my vision and had some heart issues. The medical team at Vandy calls me their miracle child.”
Claussen spent 162 days in the hospital in 2013, racking up medical bills that total $4 million, before insurance, to date.
By fall 2014, the doctors told Claussen she was strong enough to go back to school.
“The whole time I was sick I kept thinking to myself that I don’t want to die without a degree,” she said. “All I wanted was to get back to UT.”
Claussen’s transition back to campus was difficult. She battled depression because she couldn’t go out much, tired easily, and had to stay out of the sun. She had missed a full year of school and was now a year behind her peers. She had to make new friends.
“Some people thought I was playing the cancer card and trying to be a loner,” she said. “Assistant Vice Chancellor of Student Life Maxine Davis and the Office of Disability Services were really there for me the whole time.”
A Very Special Guest
By August 2015—the start of Claussen’s senior year—she was able to request information about her donor. International stem cell recipients must wait two years before requesting to contact their donor.
Reverts agreed to share her information with the unknown recipient who had requested it.
“I sent her an e-mail and basically told her thank you for giving me the best gift anyone has given me, a second chance to live,” said Claussen. “I told her about being a senior at UT and that I want to go into the medical field in Nashville when I graduate so I can help other people who are fighting cancer.”
Reverts e-mailed back and told Claussen how much she’d thought of her, wondering about who received her stem cells and whether it had prompted their recovery.
After a few e-mails back and forth, Reverts mentioned that she worked for Volkswagen but had never been out of Germany. She said she always wanted to visit the United States.
“I just flat-out asked her if she wanted to come to my graduation,” said Claussen. “I didn’t think she’d say yes, but she did. My parents offered to pay for her flight but she refused to take their money.”
Reverts made the ten-hour flight to Nashville on Thursday, May 12. Claussen’s parents were there to greet her.
“How do you tell someone thank you for saving your daughter’s life?” said her mother. “To not know someone and yet give so selflessly. I think I’ll probably just cry and hug her.”
The Claussens will drive Reverts to Knoxville the day of Makayla’s graduation so she and Makayla can meet for the first time.
“I think I’m going to have the ugly cry when I meet her,” said Claussen. “I can’t thank her enough. I wouldn’t be graduating without her. All I wanted was to get my degree and now I’m getting it.”
With a diploma in hand, Miracle Makayla looks forward to walking off the graduation stage and into the arms of her mother, the woman who gave her life, and then her donor, the woman who saved it.
Tyra Haag (865-974-5460, firstname.lastname@example.org)