Lily Rios’ Journey to Transplant Surgery
Wisdom From Lily: Your Disease Can't Bring You Down
Lily's Full Story Below
It’s hard for most kids to wait for anything. But for 10-year-old Lily Rios, the wait on something a lot more important than dessert or a new game was even tougher – she needed a brand new kidney.
It was Mother’s Day in 2013 when 3-year-old Lily —whose family lives in Ahwatukee— was rushed to the emergency department at Phoenix Children’s Hospital with flu-like symptoms. She didn’t respond to treatment and after weeks of testing, was referred to the nephrology program. Turns out, it wasn’t the flu, but her kidney that was the culprit of her fever and fatigue.
Lily, who had always been active, strong and healthy was initially diagnosed with Nephrotic syndrome. It’s a disorder of the kidneys that causes excess protein to leak into urine that causes swelling, leaving the body susceptible to infections. The kidneys are related to many of the body’s functions including the release of hormones and the regulation of blood pressure, and their failure to perform optimally can wreak havoc.
“Finding out she was so sick was a shock, and it was scary. She never showed any symptoms at all,” says her mom, Rebecca. Along with her dad, Tony, Lily’s family dove in to help nurse her back to health, not knowing then the long journey they would take. Doctors explored further and consulted with experts at other institutions, something for which her mom is grateful. Her case wasn’t typical, and at one point she was under the care of six different specialists.
When her symptoms continued, a biopsy revealed a devastating diagnosis: Focal Segmental Glomerulosclerosis (FSGS). It’s a critical condition in which scar tissues develop that can lead to kidney failure. At any one time, there are more than 93,000 people on the waiting list for a kidney transplant, and the wait can last between five to 10 years.
Her life changed drastically over the next six years as Lily’s nephrologist, Mark Joseph, MD and the team at Phoenix Children’s tried to keep things under control with medication to avoid a kidney transplant for as long as possible. During that time, there were many Hospital stays and visits to the emergency room when her blood pressure was too high or when her kidney function was poor. “The disease caused her to become immune-suppressed, so she got sick with everything you can imagine.”
While Lily had to steer clear of crowds to avoid infections, there were times she had to be isolated in her Hospital room for her own protection, once for 24-days at a time. She couldn’t eat her very favorite foods — potatoes, avocados, and bananas — because they were too high in potassium or phosphorus. Plus, her activity level had to be reduced. The years, her mom says, were rough, but with a little help from her furry friends, Lily kept smiling. She’s got dozens of them now, stuffed animals that her friends and family have given to her growing collection. But she also loves the real-live furry friends – the specially trained dogs that deliver “doses” of Animal-Assisted therapy at the Hospital. These therapeutic visits bring more than just good cheer and smiles, they motivate children to move and help alleviate stress and loneliness, leading to faster healing.
Then, in August of 2018, the bottom dropped out. Lily’s kidneys were functioning at just 13 percent capacity, and she was getting sicker. Doctors knew it was time to remove them, and Lily underwent surgery that October. “Once that happens,” her mom explains, you stop producing urine. That’s all done by dialysis.” So for three days every week for three hours at a time, Lily received dialysis treatment Phoenix Children’s, and the minute-by-minute wait for a transplant began in earnest.
Waiting makes time slow down, Rebecca says. There was one false alarm in January when just minutes before Lily would have gone into surgery, it became clear the kidney wasn’t a match. “It was such a blow; I went from the highest high to the lowest low in those moments,” says Rebecca. “I had to leave the room so Lily wouldn’t see me fall apart. But we tried to stay positive, and we told ourselves that one wasn’t her kidney.”
And it was true. Finding a live donor would offer the best outcome for this little girl her mom calls a “rock star.” People in good health who undergo testing for ideal matching can live healthy, vibrant lives with only one kidney. Rebecca and her family members were all tested, but none were an ideal match for Lily – until she got the call nearly a year after Lily’s kidneys were removed.
A kidney was available, and it was a match. And while not every kidney recipient knows the identity of their donor, Rebecca learned it was one of her closest friends, Jackie, who stepped up to give one of hers but had kept it a surprise. “She is the kindest person, and really wanted to give this gift of life to Lily.” She thought about her constantly too, as Lily was finally being wheeled into surgery at Phoenix Children’s on August 28th, 2019. Lily had drawn a potato on her whiteboard, a reminder that after all her sacrifices, she was looking forward to those more than almost anything.
The surgery was a success, and Rebecca says she didn’t even realize how tense she had been for so long. “I’m not a crier, but when the doctor said, ‘we have urine!’” all the stress, worry, and anxiety melted away at that moment. I had finally breathed a sigh of relief. After surgery, Music Therapy helped Lily — who loves to sing and play piano — to get up from her bed, despite the pain of recovery. “The music therapist said she would play anything that was Lily’s favorite, and she chose country. The therapist played Darius Rucker’s ‘Wagon Wheel,” and that inspired Lily to get up.”
It will take Lily three months to recover from surgery before she can head back to school full-time. Doctors predict she can go horseback riding, eat all the potatoes she wants and finally get to do all the things she’s missed out on. But Rebecca says she’ll never forget the incredible care they all received at Phoenix Children’s.
“No matter how hard it’s gotten, there is always an encouraging face here cheering her on. The first few days after surgery were the hardest she has ever gone through because of the pain. But there was always someone encouraging her and joking with her – the positive environment here helped her to get back to feeling like herself. You would never guess she just had a massive surgery to receive a new organ. You can great medical care at a lot of places, but it’s the people here make the difference.
Just 10 days after surgery, Lily has eaten scores of potatoes and even got to enjoy a Happy Meal, normally a forbidden menu item. She’s been approved for horseback riding. And that makes her and her family, well, very happy.
7-year-old Leighton is like most kids. After school she juggles a full roster of sports – hockey and baseball are her favorites. (Her dad’s a former MLB pitcher and her mom, a coach and manager of a league of girls’ softball teams). But she’s not like most kids in that a diagnosis in May stopped all the juggling balls as she underwent surgery and chemotherapy at Phoenix Children’s.