A stethoscope lay on the bed upstairs, in case someone asked Shae Brown to listen to her triumphant heartbeat.
She placed the medical instrument there, anticipating an opportunity to share the joyous sound with new friends. The Millers from Glencoe, Illinois, had travelled to Shiner, Texas – a small town of 2,069 people in the southeast part of the state – to meet Brown, whose heart once pumped inside their beloved daughter and sister.
Her successful heart transplant occurred May 20, 2013, in Houston after her donor, Alyssa Miller, passed away at the age of 24 following a long illness, leaving behind a twin sister, Eva, and parents Fred and Barbara.
This is the extraordinary story of Brown and Fred, of strength and courage, grieving and living, perspective and perseverance.
This will help explain why Fred plans to run every step of the Chicago Marathon alongside Brown, who recalled that memorable June 2016 weekend as the time the families began to share more than medical history.
On the second day of the Millers’ visit to Texas, Eva worked up the nerve to ask Brown something she expected.
“Eva said, ‘This is probably a really strange question, but is there any way we could listen to Alyssa’s heart beating inside of you?’” recalled Brown, 49, a dental hygienist.
“I said, ‘That’s not a strange question, and yes you can.’ So I went up the stairs and got my stethoscope.”
Eva pressed the device against Brown’s chest and listened emotionally. Then Barbara leaned in close and heard the beating that once had provided the rhythm for so much joy in her life.
When it was Fred’s turn, he wanted to hear too, but hesitated.
A father still struggling to cope found the timing too soon, the pain surprisingly fresh.
“I think I was more shocked by my own reaction that day than I was that Eva brought it up to Shae,” said Fred, 62, a psychiatrist for NorthShore University HealthSystem in Evanston, Illinois.
“But no, I just… couldn’t do it. I couldn’t listen. It’s a very surreal experience knowing that there is a part of my daughter that is still here.
“To be clear, this is Shae’s heart. This is Shae’s life. We get that and don’t want to put any burdens on her. We want her to be herself. That said, it is kind of a weird thing.”
Fred paused, looking for the right thing to say, like good psychiatrists do. “In a way,” he said, “I’ll be running a marathon with a part of my daughter.”
Medical professionals encourage heart transplant recipients to wait a minimum of one year to contact the donor’s family and Brown was counting the days. But as the anniversary arrived, reality hit her.
“I was like, ‘You can’t write that letter now, on the one-year mark, when it’s going to be all new and fresh to them,’” she said.
“I couldn’t have them relive that. So I clammed up.”
Another year of doubt and curiosity passed until Brown received some good advice: Instead of sending what amounts to a thank-you card, tell the Millers her story – and what an inspiring one it was.
At 16, doctors diagnosed Brown with rhabdomyosarcoma – a cancer of cells that normally develop into skeletal muscles.
At Stage 4, the scared teenager faced long odds of survival.
She recalled one doctor giving her three months.
The chemotherapy drug, doxorubicin, damaged her heart, but her cancer required the most aggressive treatment possible to stop the tumours from spreading.
One Sunday, hours after Brown remembers the local pastor visiting, nurses noticed a difference in the colour of fluid in the bag connected to her catheter. Her abdomen softened. Unbelievably, her prognosis changed by the time she went to bed.
“I’ll never forget my doctor saying before he walked out of my room that night, ‘It looks like the man above is doing some work here,’” Brown said.
“They were shocked my tumour started shrinking. Most people who had that kind of cancer didn’t make it, but here I am.”
There she was, almost a lifetime later, hitting the highlights of her incredible journey in a letter to the Miller family she desperately wanted to meet.
Brown included how the chemo drug weakened her heart enough to need a pacemaker installed at the age of 35. How in 2012, at 43 years old, she was placed on a transplant list where she remained for 14 months of uncertainty.
How after the transplant, doctors told Brown her heart had been functioning at 1% of its capacity.
“I didn’t realise how close to death I was,” she said. “I learned at 16 you don’t take life for granted. You’re never guaranteed tomorrow.
“Each day since then I’ve lived with an extreme thankfulness that you get to wake up every day.”
This was the type of truth she shared with strangers in the letter she finally sent the Millers, a handwritten note that still sits on a desk in Fred’s basement.
Those were some of the words that provided a glimmer of light during a dark period for a family still trying to comprehend its incomprehensible loss.
“What really rang true about Shae’s letter was how grateful she was and her empathically understanding that we were grieving and this might help us,” Fred said.
“That the heart went to somebody who wouldn’t let us down. … I’m never going to lose that letter.”
As Brown lay in the hospital imagining all the possibilities of life a new heart allowed her, someone asked if there was anything specific she wanted to accomplish.
Brown’s immediate answer surprised even her. “I said, ‘One of these days, I’m going to run a marathon,’” she said.
That recollection came up in conversation the weekend Brown first met Fred, a lifelong runner who had endured 10 marathons, but ran his last in 2010.
Brown had no idea of Fred’s running background when she related her goal of going 26.2 miles (42.2km). The bucket-list item was simply mentioned casually as the two families got to know each other better.
The next morning, after having time to process everything back home in Illinois, Fred sent Brown an email in which he made a pledge.
“He let me know he had run 10 marathons, and if and when I ever got to the day I wanted to do it, to let him know and he’d run right there with me,” Brown said.
Looking back, Fred admits the promise to run with Brown was a bit impulsive.
But something greater than the concern over his sore knees and back compelled him, something stronger than self-preservation.
“I think there was a desire to be close to Shae, and to her family,” Fred said. “I can’t put it exactly into words. It was a feeling that, if this person who had just had a heart transplant was willing to put herself through that, then that’s the least I can do is go with her.
“I’m not sure it was the most thought-through thing but I’m happy to be doing it with her.”
“How it will affect me in terms of emotions, I’m sure it’s going to stir up a lot of things as it already has, but that’s part of the grieving process,” Fred said. “I really don’t know what to expect.”
He only knows it gives him a platform to pay tribute to the daughter affectionately called Lissy, a creative soul who loved to laugh and write and act and take pictures.
A play Alyssa wrote as a kid was once performed at a local theatre. A photograph she took of a grandfather and a granddaughter staring into each other’s eyes still makes Fred brag. The illness the Millers wish not to publicly discuss robbed Alyssa of so much so soon, but seeing Brown live life with such passion since the heart transplant has provided some solace.
“There are elements of the marathon that are consistent with Lissy’s personality; she was a real determined person,” Fred said.
“There is part of me that wants to let the world know it. I’m not a person that seeks the limelight, so it’s a little awkward for me to be in this position. But in a very cerebral way, I’m really gratified to be doing it. It gives me a chance to really honor my daughter.”
“One of the striking things for me about this is that there’s also another message that everybody needs one another,” Fred said.
“We’re in this time that’s incredibly divisive. We’d have never have met these people in Shiner, Texas. And I think I can say most likely they’d never have come to Glencoe, Illinois.
“But there’s something that transcends all that; that there isn’t really an us and them. It’s really kind of just us. Everybody needs everybody. Shae needed a heart, obviously. But we need her to help us. She really gets that.” – Chicago Tribune/Tribune News Service