The miracle of a patient’s recovery
Written by Cassie Myers
If it was a movie script, you wouldn’t believe it. A 28-year-old woman has a miscarriage while on vacation in Mexico. When she goes to the doctor, a nightmare begins. She ends up spending the next five years in and out of hospitals. At one point, she’s told she’s going to die. She takes chemotherapy, sees a naturopath, sees doctors in her native Ukiah and at Stanford, even goes to Philadelphia and Boston to see experts on the disease. They all agree that nothing can be done.
And then? She gets better. Nobody knows exactly why or how, but she puts on weight. Her skin, once a jaundiced yellow, returns to its normal color. Her doctors’ visits decrease. And as of right now, Lindsey Freeman, 33, is healthy. She lives in Ukiah, where she grew up, with her husband Jordan, daughter Millie, and extended family nearby. She takes Millie to preschool every morning. As she puts it, “I feel like I’ve been given this really strange gift.”
The start of the problem
It all started in March of 2012. On vacation in Mexico, Lindsey Ingram, then 28, suffered a miscarriage. “We didn't really understand why right away,” she explains. “They just knew that I had a hematoma in my uterus.” The doctors discovered a shadow on her lung, and she had surgery to remove a mass.
Ten days before the surgery, Lindsey Ingram married her boyfriend Jordan and became Lindsey Freeman. In December, they were cleared to get pregnant. “I always wanted to be a mom,” Lindsey explains, “so we jumped on the opportunity.” By the end of December she was pregnant again. The pregnancy seemed normal and healthy up until her due date, when she had to have an emergency C-section and nearly bled out.
Nevertheless, her daughter, Millie Freeman, was born on September 13, 2013. To everyone’s relief Millie, named to honor both Lindsey and Jordan’s grandmothers, was perfectly healthy.
“Knowing later what they ended up finding out, they said that she was actually an absolute miracle,” Lindsey says. “She’s our little miracle child.”
First trips to Stanford
Millie may have been healthy, but Lindsey was not. She was bleeding, a lot, to the point where it became difficult for her to walk. She saw a local hematologist and was in and out of her local hospital, but it was clear that she needed a larger hospital’s resources.
When Millie was eight weeks old, Lindsey went to Stanford. Her first stint there was five and a half weeks. Jordan and Millie moved down with her. “My husband works for my dad, so my dad was just like, ‘Don't even think about coming to work, you need to go be with her and Millie,’” Lindsey says. She was given a private room, where Jordan camped out and Millie played in a playpen.
The Stanford doctors tried everything they could to staunch her bleeding. They tried numerous medications, and eventually one seemed to work. They stopped the bleeding and sent her back home to Ukiah.
But a day after she left the hospital, she started bleeding again. She worked with doctors in Ukiah and Stanford to up the dosage of the medication, but nothing was working. And they still didn’t know the underlying cause. At this point, she explains, “I have zero diagnosis. Their goal was literally just to get me to stop bleeding, and then they would try to figure out what was wrong with me.”
Around this time, Lindsey met Dr. Caroline Berube, a hematologist who became her primary outpatient physician for much of her time at Stanford. Dr. Berube and her colleagues in various departments, including pulmonology, gastroenterology, pediatric hematology, and hospital medicine, desperately tried to stop the bleeding, and—what’s more—to find out what was wrong.
In February of 2014, Lindsey finally had a diagnosis: KLA, or Kaposiform lymphangiomatosis: a very rare, newly-identified, incurable condition caused by abnormal lymphatic vessels that often cause life-threatening bleeding. It’s usually a pediatric condition-- only a handful of adult cases have ever been reported. Most patients die within three years.
But Lindsey’s team of doctors didn’t give up. They put her on medication and, as she puts it, “For a year and a half I did okay. I wasn't super sick but I didn't really have energy.” She still had blood and iron transfusions, mostly in Ukiah, but she’d also occasionally start bleeding again and wind up back at the hospital.
A turn for the worse
In September of 2015, Lindsey started to turn yellow. She called Jillian Settlemire, RN, a nurse coordinator in Dr. Berube’s office who often calmed Lindsey down and was always a “huge help” during her illness, and explained what was happening. Jillian told Lindsey to come back down to Stanford.
Lindsey calls that “the beginning of this huge kick in the stomach for the next year and a half. I got down to 96 pounds. I was mustard yellow all over: my mouth, my eyes, my fingernails, my skin. And I just kept hearing over and over, ‘We don't know what to do.’” The disease was taking over her liver, and the doctors were working frantically to save her, but she was still sick.
In December of 2015, during one of her stints at Stanford, she and her family were given an apartment near the hospital, so she could come and go with ease. She remembers one particular day, when Dr. Berube came to see her. “I went up there with my dad,” she says “and we just thought we were going over there just for a blood transfusion. But Dr. Berube was really, really worried about me. She looked at my dad and me, and she said, ‘You know, I think it's time you start preparing for the worst if it does happen.’ This was the first time we had heard it. My dad took his glasses and he just chucked them, he was so upset. He punched himself in the face. It was horrible, so horrible. And he walked out. He can't stand crying in front of me -- or anybody -- but he went to the bathroom and he came back and this was the first time that I said, ‘Dad, we have to be strong. We can't think like that. I'm not going anywhere.’ That was the first time we heard it and I thought, Okay, well, this is real now.”
Dr. Berube and Dr. Michael Jeng suggested that she go to the East Coast to see Denise Adams, an expert in the disease, in Boston. Adams suggested that she go to Philadelphia as well. So in March 2016 Lindsey, her husband, her daughter, her parents, and in her in-laws flew to the East Coast to speak to the experts. In both cases, the results were devastating: there was nothing anyone could do. Again she was told that she was going to die.
“That was always what I heard,” Lindsey says. “So I just remember feeling really calm and saying, ‘Okay.’ And I don't know if I was in denial or what, but I always felt like I wasn't gonna die, even though I heard it over and over and over. I just kept thinking, That's not gonna happen. I have to be here for my daughter, you know?”
She saw a naturopath. She kept fighting. As Dr. Berube put it, “This woman would not give up.”
“I really don’t know how I was even alive”
In May of 2016, everything looked even darker. “I don't even know how I could've gotten worse, but I did,” Lindsey says. She was sent back down to Stanford, to see Dr. Berube and her other doctors. A man from Florida, Jack Kelly, happened to be in the area. His daughter had had KLA, too, and had died from it.
Lindsey’s doctors wanted him to visit her. They’d been urging her to start chemotherapy, and hoped talking to him would help persuade her. She agreed to see him. “I was terrified to talk to him just knowing that his daughter had passed away from this disease, “she says, “but he was actually really inspiring. He was really kind.” They talked for a long time, and he told her the chemo was the only chance she had.
“I thought about it, and I was like, I said I would do anything to stay alive for my daughter,” Lindsey says. She agreed to the chemotherapy in June of 2016, doing it about every three weeks until January 2017.
“It just kicked my butt. I was sick, I was throwing up, my liver just wasn't getting any better. I was on all kinds of medication,” she says. And in the meantime, other symptoms were cropping up. She started getting ascites, an accumulation of fluid in the peritoneal cavity that causes abdominal swelling, and had to go regularly to the doctors to get the fluid drained, probably twenty or thirty times overall. And, she adds, “Every time they drained my abdomen or my lung it was blood. It scared every doctor who ever touched me. I really don't even know how I was alive. It was horrible. But I just kept--if I didn't have my daughter, I probably wouldn't have cared so much, but, you know, I had her, I wanted to be there for her.”
Moments of joy
There were moments of joy. If you spend five years in and out of hospitals, you’ll end up spending holidays there, even birthdays, and you’ll grow very close to the staff, doctors and nurses alike. Lindsey remembers one birthday when the Stanford nurses worked especially hard to please her. One nurse “brought me a coffee with my name on it and cookies and then all day long I got flowers and gifts from all these nurses, who were just like so sweet, made my birthday so special. We had dance parties, we were singing and you know, it was great. It was like, well, if I'm gonna be here…”
She remembers another great nurse, Shelly Gray, and says, “Instantly we just loved each other. She came in and she would take Millie for walks. Millie kind of grew up at Stanford. The doctors and the nurses would get to know her as well and so she'd get to know them. Shelly brought Millie this cute little doctor kit, and then we just became friends.”
Lindsey loved Dr. Berube. “She was the sweetest lady. Whether it was good or bad, she just--she was just really heartfelt and really caring.” Another one of her doctors, Errol Ozdalga, “was always so nice and so positive and just upbeat. He was never like that doctor who came in with a sad look on his face. He was always just like smiley and trying to figure out the next thing that we could do.”
A community of collaborators
During her various visits to Stanford, Lindsey interacted with an enormous amount of people: doctors, nurses, staff, and trainees, who were all part of what Dr. Berube calls the “huge collaboration” of people who worked to save their patient. During her hospitalizations, for example, Lindsey saw dozens of trainees for her daily care, and of course the work took “an emotional toll” on them, too, as Dr. Berube attests. Lindsey’s first hematologist, for example, was Dr. Ameen Salahudeen, and her main GI doctor was Dr. Kirsten Regalia. Both doctors were with her during her first stint at Stanford and became “huge supports” for her throughout the years of her illness.
Even people Lindsey never interacted with personally were involved in her care. “While we were trying to keep her alive,” Dr. Berube explains, “other teams in Stanford research labs were analyzing her biopsy samples and genetics trying to figure out what was wrong with this rare condition.” In the end, Lindsey’s recovery was both unearthly and decidedly earthbound: a surprising result of the work of literally dozens of doctors, nurses, researchers, and staff, all working together to heal one patient.
Even in illness, Lindsey inspired the other people around her. Dr. Berube loved her. “She is this lovely beautiful woman, you know, beautiful inside and out,” she says. “She was very special to us.” She emphasizes Lindsey’s positive attitude and family support, adding that the family’s gratitude for their providers helped not just Lindsey, but the doctors as well. In such a multi-department, interdisciplinary effort, Lindsey’s family’s gratitude helped her providers keep going, even while they coordinated her care through three or four different specialties, as well as on- and off-site clinics.
Jillian Settlemire, Dr. Berube’s nurse coordinator, echoes this praise. She calls Lindsey “probably one of the strongest women I know,” adding that she’s “kind-hearted and optimistic” even through such a “large ordeal.” Taking care of her was a challenge. Jillian and Lindsey were around the same age, and Jillian says, “I would always think about how I would feel if I was her and how scared she must have been.” Ultimately, though, taking care of Lindsey was “a really great experience” for Settlemire. “She’s become one of my favorite patients and I’m happy that I was able to participate in her care,” she concludes.
Lindsey’s hometown of Ukiah is a small community, and they raised $70,000 for her trip to Philadelphia and all the other out-of-pocket expenses (Stanford doctor Kirsten Regalia also contributed).
“My community did not want us to worry about money,” she says. “When I was really bitter at first, somebody told me, ‘You know, you need to have an attitude of gratitude or you're gonna hate this process.’ And it changed my outlook on the whole thing.”
A ray of hope
By November 2016, everything was dire. That Thanksgiving Lindsey was back down at Stanford, and her whole family came down “to say goodbye.” Lindsey thinks it was probably the second or third time they’d done this, but this one seems to stick in her mind. “I was so, so sick,” she says. She was still bleeding, nauseated, jaundiced, and very thin. She’d also gotten a severe infection. “She looked like an end-stage cancer patient,” Berube says.
They tried a few new different treatments. They gave Lindsey IV nutrition, upped the dosage of one of her medications, and Dr. Berube wanted to keep the ascites in Lindsey’s body a little longer to minimize the number of abdominal punctures.
What happened next is still more than a little unexplainable: “Nobody really knows what made me better,” Lindsey says. “Nobody can actually tell me. So we all think it was kind of just like everything combined. And it worked. That's kind of when things just turned around.”
Lindsey’s bleeding subsided. Her ascites stayed away. Dr. Berube wanted her to continue with chemo after she was released from the hospital in early December.
“And all of a sudden, I started putting on weight,” Lindsey says. “I walked past my mirror one day and I was like, ‘there's a little jiggle that I didn't have,’ you know? And I just kind of feel like a miracle was given to me.”
No one rushed to proclaim her healthy. She’d had times, during various stints in the hospital, when things improved briefly and then she “fell off a cliff again.” “It took us a little while to celebrate,” Lindsey says. “We held back. But I also think that once I started putting on weight that we were all a little bit more hopeful.”
Dr. Berube was as surprised as anyone. “Clearly she was dying,” she says. She doesn’t know what fixed Lindsey, but says she thinks it’s “a combination of factors, but I don't know which one was the most important one.” It could’ve been the IV nutrition, or the treatment of the infection, the chemotherapy, or an increased dosage of one of Lindsey’s medications.
“Honestly,” Dr. Berube says, “I've been doing hematology for thirty years. I've never used the word miracle, but I think this was it.”
Lindsey continued to have regular doctor’s visits, but in early 2017 she asked Dr. Berube if she could stop chemotherapy, and Dr. Berube agreed, but reminded her there was no guarantee that they wouldn’t have to start again. But as of this writing, Lindsey hasn’t needed it. Her disease has entered what Dr. Berube calls a “quiet phase” or “a good partial remission.”
Lindsey’s checkups decreased. She still has her blood drawn regularly, but for the first time in five years, she’s been back to normal. She hasn’t been back to the hospital since that Thanksgiving admission in 2016.
“One thing that was really scary for me always was knowing that my daughter was approaching preschool age,” Lindsey says. “I was terrified that I wasn't going to be able to do these normal mom things with her. And now I get to get up in the morning and make her breakfast and get her dressed. Which is all I ever wanted. I just feel like this whole entire thing was this crazy weird bad dream.”
The new normal
So Lindsey’s back in Ukiah, with her family and her daughter. Things are mostly back to normal—she’s woken up from the dream. But she’s carried memories of it with her into waking life.
“I still at least once a week get somebody coming up to me in tears,” Lindsey says. “The other night it happened twice. And now I'm a thousand times more grateful just that I'm healthy.”
The story is bigger than Lindsey, in some ways, but in other ways, it isn’t. “I think it's not only the disease, it's Lindsey's story,” Dr. Berube says. “She's a very special person.”