Beating big odds

Samantha Phelan wasn’t keeping up with the basketball team. Doctors told her she had asthma but inhalers didn’t help. She was very anemic, but iron supplements weren’t making a difference. 

By the time her family took the 15-year-old to the pediatrician, Phelan’s hemoglobin levels were so low that she was rushed to an emergency room for an immediate blood transfusion. Doctors determined Phelan didn’t have leukemia but weren’t sure what, exactly, she was suffering from. 

A month later a specialist discovered the Oak Park and River Forest High School freshman had paroxysmal nocturnal hemoglobinuria (PNH), a rare disease that causes the body’s immune system to attack its blood cells and affects about 1 in every million people. 

After three years of treatment, a bone marrow transplant and year spent in recovery, the OPRF graduate was cured of the illness and enrolled at the University of San Francisco (USF), where this year she graduated early as valedictorian of her class.

“Before my arrival at USF I looked very different. I had an IV line inserted into my right arm and an orange plastic feeding tube traced a path from my nose to my stomach. I was bald and quite a few pounds lighter,” Phelan told her graduating class. 

“For a long time, I didn’t expect I would ever attend college. I was not sure how many years were left in my life or how many of those would be ones where I felt good. So when I arrived in USF in 2016 as a freshman, healthy and free from disease, I was elated.” 

In April 2012, Phelan had been diagnosed with PNH, after months spent visiting doctors around the country. After a specialist finally diagnosed her, Phelan settled into her comfortable childhood room in River Forest and googled the illness, reading the horror stories against the advice of her doctor. 

She learned PNH was life-threatening and started to cry. 

“My dad came in and told me, ‘We’re going to take care of this, we’re in this together, it’s going to take a lot, but we’ve got it in us,'” she said.  

Doctors were divided on how PNH should be treated. Some recommended a bone marrow transplant, but others recommended continuing on a new drug named Soliris that’s long-term effects hadn’t yet been determined. At the time, Soliris was the most expensive drug in the world, costing about $20,000 per dose. Her family’s insurance covered almost all of the cost, and Phelan decided to temporarily take the drug but continued to evaluate a transplant. 

Every two weeks, she visited Lurie Children’s Hospital, where she spent at least half a day receiving the infusion. She remembers examining the small bag containing the Soliris and feeling awed by its price. 

“Don’t drop it,” she thought. 

After the procedure, she would try to return to OPRF but often traffic, a wait at the hospital or simply the doctor’s visit would hold her up. 

Classmates asked why she missed so much school, but Phelan grew tired of explaining her complicated illness. She wore long sleeves to cover the bruises from treatment and told school mates she was tired, wasn’t feeling well or that how she spent her time was none of their business. 

“It just kind of consumed a lot of my time and energy, especially also just having the effects of you mentally knowing you have this life-threatening illness,” she said. “I felt like I had to deal with it all the time, think about it all the time, I didn’t want to have to explain it all the time.”

Phelan told her close friends about her condition, but no one else. Her parents emailed her teachers about her diagnosis, and her father John Phelan — who at the time served as president of the OPRF District 200 Board of Education — would go in occasionally and speak to individual teachers. 

“Some teachers would be really understanding, and they were super helpful, and others were not helpful at all and I would really struggle in their classes,” Phelan said.

When Phelan was initially diagnosed with PNH, doctors tested her five brothers and sisters to see if their bone marrow was a match for a donor. Finding a perfect match was important because, if the match wasn’t nearly identical, Phelan’s body could recognize the bone marrow as foreign and attack it, causing her to break out in a vicious rash or go into organ failure. Her brother John matched, and Phelan decided to go through with the bone marrow transplant once she graduated from OPRF. 

“If I was 18 I could make the decision for myself,” she said. “I didn’t want to have my parents sign off, I didn’t want them to feel any sort of guilt.”

Phelan graduated and, a few days later, was admitted to Lurie Children’s Hospital, where she spent the next 10 days receiving chemotherapy and radiation.

Once Phelan’s bone marrow had been destroyed, her brother John flew in from New York City, where he was living at the time, and checked into a hospital room. On June 10, 2015, doctors inserted a giant needle into his hip bone and sucked out a small bag of red marrow. Specialists them immediately delivered the bone marrow to the room downstairs where Phelan was staying and used an IV to inject it into her blood stream, where it coursed through her body, finding its way into her bones. 

Doctors nicknamed the day of the transplant “Day 0” and watched her recovery closely over the next 100 days. 

Phelan doesn’t remember those next few weeks in the hospital very well but knows that her parents rotated nights and daytime visits to her, so that she was never alone. Her sister parented her three younger siblings. 

“I recovered super fast compared to so many transplant patients,” she said. “It was a whole group effort.”  

After five weeks, she was transferred to the Ronald McDonald House so she could stay in a larger but still sterile room. Two weeks later, Phelan returned to her home in River Forest, where she would spend the next year rebuilding her immune system.    

In anticipation of her arrival, her family installed an air filter, sterile sheets and had their old home professionally cleaned. Phelan was also placed on a low-bacteria diet, which meant that she could only eat prepackaged or frozen food, or fruits with a thick peel. When she got well enough she would stand outside — away from people, who could make her sick — and simply breathe in the fresh air. 

“I wasn’t allowed to go to the church or grocery store or anything like that, so just getting again out in the world and staying away from people,” she said. “People could give me a cold or something I can’t fight, especially there’s always a risk for people who didn’t vaccinate their kids. That’s a huge risk.” 

By August 2016, Phelan had recovered and enrolled at the University of San Francisco, a school she chose because it was near family and in a city with convenient pharmacies and a major hospital. Her freshman year she contracted at least four sinus infections, and worried constantly over the cleanliness of the open salad bar in her school’s cafeteria, but survived. 

Phelan petitioned the university to let her take extra credit hours and finished her communications studies degree a year early, earning a grade-point average of 4.0. The university awarded her the Father Flynn award, which recognized her perfect GPA. Officials invited her to apply to be valedictorian and, after presenting three references and the speech she intended to deliver, they chose her for the high honor. 

“I wonder where I might be without my mom and dad here to guide me. What would I do in times of distress without my friends to rely on? Who would I be without my professors to challenge me, and would I be alive without my brother’s bone marrow? I’ll never know. But what I do know is that I can be that pivotal person in someone else’s story. We all can,” Phelan told her graduating class.  

CONTACT: ntepper@wjinc.com