New lungs, new life
A transplant survivor's struggle to keep her smile
Cassie Stockton reclines on a doctor’s exam chair, preparing for yet another medical procedure. The 21-year-old community college student, who hopes to become an ultrasound technician, is a patient at Stanford’s Laser and Aesthetic Dermatology Clinic. A tiny woman, with white-blonde hair and full lips, Stockton is here regularly for what are common cosmetic treatments for much older women — injectable fillers, chemical peels, pulsed light rejuvenation.
For Stockton, these skin treatments have meant so much more. They’ve helped give her back her smile.
Stockton was 15 years old when she came out of a surgery born into a new life. No longer would she have to hide at home from germs like the common cold virus. No longer would there be panicked, middle-of-the-night emergency room trips, the constant struggle to breathe, the gasping for air.
The oxygen machines, the vasodilators, the feeding tubes, a childhood spent living in fear — all tossed.
From this day forward, Stockton could be almost like other teenagers — go out on dates, hang at the lake, go to school every day even during the germ-filled winter months. She could play soccer in PE, have a first kiss, go to prom. Breathe deeply. Belong.
The day Stockton woke up out of the anesthesia six years ago after a 13-hour surgery at the Transplant Center at Lucile Packard Children’s Hospital Stanford, she breathed in oxygen with newly transplanted lungs, and breathed out sobs. Tears streamed down her face.
“At first, I thought she was in pain,” says her mother, Jennifer Scott, who stood by her side. But that wasn’t it. Stockton was overwhelmingly sad because she now knew her new lungs were the gift of a child.
It was Dec. 6, 2009, just before Christmas. The death of someone else’s child had given her a whole new life.
Six years later, Stockton’s sickly childhood has become a thing of the past. But as an organ transplant recipient she faces new medical challenges. A daily regimen of immunosuppressant medications — a handful every morning and night — is essential for keeping her body from rejecting her new lungs, but they caused an increased susceptibility to diabetes and a high risk of skin cancer. Now she’s a diabetic whose strict, daily, self-care regimen includes insulin injections and waging war against a barrage of skin cancers.
Every four months, she and her fiancé make the four-hour drive from their home in Bakersfield, California, past the oil rigs and cattle farms to Stanford’s Redwood City-based dermatology clinic for her skin cancer screening. It’s been two years of treatments: freezings, laserings, a total of eight outpatient skin surgeries — the most significant resulting in the removal of the left half of her lower lip. The dermatologic surgeon removes the skin cancers, and then gets to work to repair the damage.
“It’s heart-breaking to have to remove the lip of a 21-year-old woman,” says Tyler Hollmig, MD, clinical assistant professor of dermatology and director of the Stanford Laser and Aesthetic Dermatology Clinic, who leads Stockton’s treatment and keeps her looking like the young woman she is, restoring her skin, rebuilding her lip, making sure she keeps her smile.
Stockton doesn’t complain about any of it. It’s her job to take care of the lungs given to her by that child, she says. She knows she got a second chance at life.
“After the transplant I felt like I threw half of everything bad away,” Stockton says. “Now I stay on a strict regimen of medications. I can’t skip a day of it. The more I work out at the gym, the more it helps my lungs. I protect my skin and stay out of the sun. A lot depends on how well you take care of yourself. Finally I can breathe.”
Stockton’s own lungs never really had a chance. Born premature, the newborn was intubated the first two weeks of life, then sent home with her mother and an oxygen tank. She remained on oxygen 24 hours a day for the first two years of her life.
Eventually, she was diagnosed with bronchopulmonary dysplasia, a chronic lung disorder more common in infants who get mechanical ventilation to treat respiratory distress syndrome.
“She was always so sick,” says her mother. She and Stockton are together at the Scotts’ home in Bakersfield looking at childhood snapshots scattered across the dining room table — a 1-year-old Cassie with oxygen tubes in her nose, a smiling Cassie posing at the prom in a short skirt and high heels.
“She was always short of breath and prone to lung infections,” Scott says. “She would not thrive. She didn’t walk until a year and a half.”
To protect her baby from the lung infections that resulted in repeated emergency room visits, Scott kept her at home away from any possible germ sources, including playmates.
“She was always congested,” Scott says. “She would sit in my lap and I’d pat on her chest saying, ‘Come on lungs, come on lungs.’ That was what she said when she first started to talk.”
At the age of 2, Stockton was able to come off the oxygen machine during the day, but remained on oxygen during the night. She was still sickly, but she could do a bit more, ride her tricycle, run around. But during visits to the park, mother and daughter sat alone at a bench away from any germs and watched the other kids play.
“I remember being angry, really angry,” says Scott. “I just wanted her to be able to get up and play.”
At 5, Stockton got sick again, this time with the flu, and was back in the hospital, intubated once more.
“This time Cassie’s lungs were destroyed,” Scott says. “Doctors told me it may be years from now, but she would need a double-lung transplant. After that there was a huge change in Cassie. She couldn’t ride her tricycle anymore, she could barely breathe to walk.
“She was so skinny, so frail, even malnourished. She was always breathing so hard, burning up calories. At 6 years old, she was just 25 pounds,” her mother recalls.
A physician kept Stockton, who also had a gastric reflux condition, on a feeding tube for the next two years. Eventually she got strong enough to go to a small, private kindergarten and on to first grade at a public school. By homeschooling Stockton during the germ-filled winter months, her mom was able to keep her out of the ER for the next decade. Then at 15, Stockton came down with pneumonia.
That year there were heavy wildfires surrounding Bakersfield, the smoke and smog settling thick as soup into the Central Valley’s bowl-like basin. It affected a lot of people’s lungs. Stockton was an eighth grader at Fruitvale Junior High.
“One day we were sitting at the table at home, eating cookies and drinking milk,” Scott says. “Cassie wanted her lip pierced. I said no. She got mad and went to her room. When I peeked in, she was crying.”
But it wasn’t about the piercing. Stockton was having really bad chest pain. It was pneumonia. The two headed back to the ER. This time, Stockton’s lungs wouldn’t survive the attack.
Afraid her lungs were too weak to keep her alive, the staff at Children’s Hospital in Madera inserted a catheter into the main artery of her neck and connected her to an ECMO (extracorporeal membrane oxygenation) machine. ECMO is a life-support system. Oxygen-depleted blood from the patient flows through the machine where it gets re-oxygenated and sent back to the body. Then they sent her to Stanford, well-known for its expertise in transplant medicine.
“She was in complete lung failure,” her mom says.
Over the next two weeks while at Stanford, Stockton was slowly weaned off the ECMO machine until she was able to walk around her unit. She wasn’t going to die, not yet at least. But she needed a lung transplant as soon as possible. Stockton, not her mother, would need to give her own approval to undergo the life-changing surgery.
“The doctors told me, ‘It’s not up to you,’” her mom says. “‘Cassie’s old enough to make that decision herself.’” When they asked Stockton, she refused.
“I was shocked,” her mother says. “I guess she was just so sick, so tired of all of it.”
As Stockton listens to her mom tell the story of her childhood, the tears continually start and stop. Maybe it’s more for her mother than for herself, but lines of mascara stream down her cheeks. She walks off to the kitchen to compose herself, circles back into the dining room, then walks away again, the tears still flowing.
Through it all she keeps smiling.
“I was scared,” Stockton says, remembering back to the transplant decision. Two weeks later, after talking to other young transplant patients at the hospital, she changed her mind. She agreed to the surgery, was put on the lung transplant waiting list, and went home — to wait.
Six months later, in December, they got the call.
“We got in the car and drove to Stanford,” Scott says. “It was a 13-hour surgery that lasted all night long.”
During the four-month recovery period spent living in the Ronald McDonald House at Stanford, Stockton’s first order of business was studying for her online driving test. She couldn’t wait to start life as a “normal” 16-year-old.
Her transplant had come at a particularly tricky age, smack dab in the middle of those rebellious adolescent years. Stockton’s pulmonologist knew there would be battles to come. Teenage rebellion for transplant patients isn’t allowed. It’s too risky.
“They have the worst outcomes, adolescents,” says Carol Conrad, MD, a Stanford pediatric pulmonologist who has been Stockton’s physician since she first transferred to Stanford from Madera on the ECMO machine.
“They forget things, or they think they are going to live forever. I tend to be very strict and very clear that my patients have to follow every single one of my directions because we really don’t have options for treatments after transplants. Poor Cassie, she wanted to be so normal, to look like everybody else, to get up and get out of the house, to go out and date boys.”
After the transplant, Stockton did turn into a full-time teenager just like she wanted. She hung out at the lake. She drank sodas. Got a tan. Dated boys. Nothing so rebellious, but she soon learned that as a post-transplant patient with diabetes, she had a new set of rules to follow. Conrad helpfully pointed these rules out.
“One time, I showed up at her office drinking a Gatorade,” Stockton says, the sugar-filled drink off limits to diabetics.
“Dr. Conrad told me to ‘throw that out.’”
Another time, she showed up at an appointment wearing a tank top and a tan. The no-tan rule took a little longer to sink in.
“She told me to, ‘Please throw the tank top away,’” Stockton says, laughing. “It took me a while to get used to Dr. Conrad. It was like having a second mom. We have hot, humid weather in the summers in Bakersfield, and it’s torturous. Everybody likes to go to the lake. My friend has a boat.”
“She would come very, very red to clinic,” Conrad says. “She would say she was out at the beach. I kept on telling her, ‘You can’t do that.’”
About two years post-transplant, Stockton began to understand why.
One of the drugs that Stockton was prescribed after her transplant put her at a high risk of skin cancers. (It was voriconazol, an antifungal to protect against fungal diseases such as Valley Fever, which is common in Bakersfield.)
No signs of skin cancer appeared until Stockton turned 17. She went to Pismo Beach with her family one weekend, and thought it was strange that her hands got burned even though it was a chilly, windy day. Then over a short period of time, dark spots began to appear on her hands, on her lower lip, on her chest, even on her scalp.
“I got a little concerned,” she says. Conrad sent her to the dermatology clinic. And thus began another merry-go-round of doctor visits, this time to battle an onslaught of basal and squamous cell skin cancers.
Since 2012, Stockton has undergone a wide assortment of dermatological treatments at Stanford including liquid nitrogen to freeze off precancerous growths and eight rounds of a procedure known as Mohs surgery to remove deeper, more serious cancerous growths: several on her chest, scalp and, the most severe, on her lower lip.
“At 21 years old, Cassie has significant sun damage to her skin,” says Hollmig, who was the surgeon for the Mohs procedure that resulted in the removal of the left half of her lower lip. “She had two recurrent, high-risk squamous cell cancers invading the visible portion of the lower lip. We were forced to excise almost half the lip to clear the tumors.” Stockton’s lip cancer could have metastasized and traveled to her lymph cells, a deadly risk. She had the procedure done in one day at the end of September.
Mohs surgery, developed in 1938 by Wisconsin surgeon Frederic Mohs, MD, is a type of microscope-controlled surgery used to treat common types of skin cancer. It involves slicing off thin layers of the cancerous tissue, then studying the slice under the microscope as soon as a slide of the tissue is prepared. If the surgeon sees any cancer cells left along the borders of the excised tissue, the patient gets called back in from the waiting room for another tissue excision. This process continues until the surgeon is certain the last bit of tissue removed is completely free of cancer cells at all its borders. Studies show it’s by far the most effective and efficient way of eliminating dangerous skin cancers and those arising in important anatomic regions such as the eyelids, nose and lips since it removes the entire skin cancer while sparing the maximum amount of normal skin cells, Hollmig says.
“It takes about 15-20 minutes to remove each layer,” Hollmig says. “Patients have to plan to be there all day. To identify every cancer cell we want our slides to be perfect. It takes 45 minutes to over an hour to make these high-quality slides of the removed tissue so that we can see every cell at the edge of the skin cancer.
“Cassie’s largest skin cancer was removed with three layers of Mohs surgery. We got all the cancer out but it had extended to invade the muscle of the lower lip so a substantial portion of muscle, in addition to skin, had to be removed. As such, rebuilding her lip required a relatively large reconstructive procedure.”
That procedure was an hour-long “advancement flap” surgery. The idea was to use skin from a nearby area on her body to fill in the U-shaped gash where the left half of Stockton’s lower lip used to be.
“The best way to do that was to borrow some ‘extra’ skin from the right side of the remainder of the lower lip area,” Hollmig explains. He cut further down into the U-shaped wound left behind by the Mohs surgery to loosen up the muscle of the entire lower lip area. This created an even deeper V-shaped opening, but it also made it possible to stretch the entire right side of the lower lip across to fill the opening in.
Hollmig then sutured the two sides of the lip area together, reconnecting the inner lining of the mouth, the muscle and skin.
“Now her lip functions fine. She can talk. She can whistle.” Still, there was an unavoidable side effect from the surgery that had Hollmig worried. Stockton’s normally plump, full, lower lip was left thin and scarred on the left side. She was only 21, and recently engaged to be married. He wanted to help get back her rounded lips for future wedding photos.
“I didn’t have much of a lip left. It was very, very thin. I hated it,” Stockton says. “I’ve always had puffy lips and that’s what I’m used to. It was hard having half of a full lip.”
To further battle the skin cancer, Hollmig worked with Conrad in pulmonology to change Stockton’s antifungal medication, helping find alternatives that can help prevent fungal diseases like Valley Fever but without the skin cancer side effects.
“Working with Dr. Hollmig has been incredibly useful,” Conrad says. “He came up with alternatives that I was completely clueless about.” Now they are together working to make the same medication changes for other transplant patients.
The new medications along with Stockton’s own efforts to protect her skin from the sun — using spray tans and sun block, tinting her car windows and visiting the lake less often — have slowed the spread of the skin damage and skin cancers. Things are getting better. Stockton returns regularly to the dermatology clinics for skin checks and restorative skin procedures.
Since the September surgery, her full lips have been restored through injections with a protein filler. Laser treatments have helped soften the scar. It’s still there, a faded line dissecting her lower lip, but she can deal with that. She’s got “puffy lips” back. And she’s accepted her scars, in fact, pointing them out with something akin to pride.
“This one is from the ECMO machine,” she says, indicating the scar on her neck from her bout with pneumonia, deftly hidden under makeup.
“I always check my scalp now,” she says, running her hands through her hair to find the first of the Mohs scars, a slight dent in her scalp.
Then she discreetly lifts her shirt to show the scar from the feeding tube in her abdomen. And next to it the long transplant scar that dissects her chest.
“It’s crazy to think I’ve had all these procedures,” she says.
Her health is now better than expected. The average life of transplanted lungs is about five to six years, but with good self-care, Stockton has stretched hers to a life expectancy of about 10-15 years, says Conrad.
“She’s an excellent patient,” Conrad says. “She takes care of herself very well. She’s beat the statistics.”
Now, Stockton’s looking ahead to the future. Marriage, children, a normal life. She and her doctor are afraid pregnancy would be too dangerous for her, so she’s considering surrogacy. She’ll make it all work out somehow. “It’s been quite a journey,” she says.