A Life Everlasting

by Sarah Gray

  For more than a century, corneal transplant has been the only option for those with a damaged cornea. One of the drawbacks to a corneal transplant is that there’s a propensity for rejection, so patients often need to use immunosuppressive eyedrops for the rest of their lives.

  Also, a corneal transplant involves getting stitches in your eye.

  In the study published in Molecular Vision, researchers at Schepens described their attempts to find a way to make the cornea heal itself. They tried adding stem cells that were derived from donated umbilical-cord blood to the donated cornea—maybe Thomas’s—and found that the corneal cells did show signs of being able to regrow.

  The study was dense with scientific jargon, and it was difficult for me to really understand its importance. I wanted to know what the study really meant and to learn more about its context from someone not personally involved, so I contacted Dr. Albert Wu, an oculoplastic surgeon and corneal researcher at Mount Sinai School of Medicine.

  Dr. Wu has a B.S. in molecular biophysics and biochemistry from Yale and an M.D. and a Ph.D. in molecular and cellular biology from the University of Washington. In addition, he’s currently working on his own corneal research project involving stem cells.

  “Is it possible that this study could take some people off the corneal transplant list?” I asked him.

  “Absolutely,” Dr. Wu said. “This study is just the beginning. It shows that, potentially, mesenchymal cells can be used to heal damaged corneas so our patients no longer require transplant.” He went on to explain that in the United States every year, about forty thousand corneal transplants take place and that, worldwide, about six million people suffer from corneal blindness.

  Thomas could have restored sight in up to two people if his corneas had gone for transplant. Instead, thanks to his contribution to this study, he was assisting a research effort that could potentially restore sight to millions of people. (As of the publication date of this book, this study has since been cited in seventeen more studies.)

  Thomas was giving this proud mom more and more to brag about with every passing year. And he wasn’t done yet.

  In April 2014, WRTC invited me to speak about Thomas at a National Donate Life Month event at Children’s National Medical Center in Washington, DC. This is the facility where Thomas’s eye and liver recovery took place, so I was delighted to give a talk there.

  When Thomas’s body left our home for the first time without one of us, Ross and I wondered where he had gone. Four years later, I was finally able to ask WRTC to give me a behind-the-scenes tour of the most likely path Thomas’s body took after he left our home. I wanted to see the operating room where the recovery happened, and I also wanted to meet any of the team who might have been working that day or who may have been involved in the work on Thomas.

  After the event, I had the honor of meeting Dr. Mark Batshaw, executive vice president, chief academic officer and physician-in-chief, and director of the research institute at Children’s. But most fascinating to me was that, as one of the doctors who actually performs the infusion of hepatocytes on children, Dr. Batshaw was an end user of the Cytonet treatment. I excitedly explained that my son was a Cytonet donor, and told him about my visit.

  Then it was time for the tour. This is where Thomas had been; it was hard to believe I was getting to fill in more of his story.

  I was joined by an entire medical team, including an anesthesiologist and some transplant nurses. We began where ambulances drop off emergency patients, and then we headed up to the operating-room floor, where we changed into white gowns and put blue paper booties over our shoes.

  The operating room that Thomas had been in, OR #1, was occupied, so we toured one next door. I couldn’t resist asking a question.

  “Were any of you working here that day—March 29, 2010?”

  One nurse raised her hand. “I didn’t work that morning, but I was an employee here at that time.”

  “Has anyone here been in the room when a recovery happens?”

  Everyone nodded and looked at the floor.

  “What is it like to be in the room during a recovery?” I asked.

  There was a pause. It was clearly a hard question to answer.

  Eventually, one of the nurses said, “Emotionally, it’s difficult. You spend all your energy thinking about saving these children’s lives. When all the efforts fail, it gets to you.” Everyone nodded in recognition. “I remember that, the first time I saw a recovery, the hospital was really good about providing counseling, and making the chaplain available and everything. But while you are doing it, you are just focusing on your job. I guess it’s the adrenaline. Once the day was over and I got in my car, I just broke down. That’s when I needed the counseling.”

  Someone else said, “You feel so bad for the parents that it came to this. You wonder how they feel about it.”

  I really wanted to give these wonderful people some succor.

  “I was actually excited to be able to donate,” I said. “This was the one good thing that might come from my son’s death. I was like, ‘Please, please, take everything you can.’ I was sending good vibes to the whole team—like, ‘Please let this be successful. Do whatever you need to do.’”

  Donating had lifted my burden, not made it heavier. I felt so lucky to be able to put faces to the team that had looked after Thomas, and was also glad they now had seen the face of a parent who had been blessed by their work. I hoped that seeing my gratitude for their work also gave them permission to do their job without feeling embarrassed or guilty. Being part of a recovery is an act of kindness for the donor’s family as well as for the recipient. I wanted this team to hear that, unvarnished and straight from a parent’s mouth.

  The importance of this moment, and the emotion it brought out in me, overwhelmed me, and I suddenly felt very dizzy. I had to sit down and put my head between my legs.

  Luckily, I was already surrounded by a team of medical professionals.

  Eventually the blood started flowing again, and I asked Kimberly Woodard, Hospital Services and Professional Education specialist with WRTC, how eye recoveries are done. She told me that she performs them all over the state of Maryland, and that she often transports the tissue in her car: there’s only a short window of time in which they can be processed, so she happily drives them to Medical Eye Bank of Maryland.

  “So there are corneas sitting next to you in the passenger seat?” I asked.

  “Yeah,” she said, like it was no big deal.

  “Do you ever get a speeding ticket?” someone asked her.

  “Well, we are not supposed to speed, but I admit I have gotten a ticket with eyes in the car. I still had to pay it,” Kimberly said, and everyone booed.

  A few months later, as part of my job at AATB, I went to Baltimore to attend the annual meeting of the Association of Organ Procurement Organizations.

  This annual meeting is the national conference for all fifty-eight OPOs from around the country, as well as other industry groups, and I was really excited because I would finally get to meet Bill Leinweber and Jeff Thomas of the National Disease Research Interchange. I wanted to tell them in person how much I appreciated NDRI’s facilitating Thomas’s cornea donation to Schepens.

  Not willing to leave it to chance that I’d run into them, I made an appointment to sit down with them so I could tell them about Thomas and how important it had been to me that I was able to visit Dr. Zieske and learn about the amazing work the scientists were doing to restore sight to people with corneal blindness.

  After I showed them pictures of Thomas and talked about tours I’d gotten, Jeff Thomas said, “Since I knew I’d be seeing you here, I pulled up Thomas’s file to remind myself of where his gifts went.”

  And then he dropped his bombshell.

  “It looks like his retinas were also sent out for research.”

  Surely if the retinas had also been placed, I would have heard about it before. I had visited the facility that processed his
eyes, and they didn’t mention anything. I thought, Jeff must be thinking of some other donor.

  “No, I don’t think so,” I said. “I just went to Old Dominion Eye Foundation last year and talked to Bill Proctor. He confirmed what WRTC had told me back in April 2010. Only his corneas were placed.”

  “I’m pretty sure the retinas were, too,” Jeff said. He looked like he was sure of himself, and I was confused—and suddenly hopeful. What if another donation was out there somewhere?

  “I’ll look into it when I get back to the office,” Jeff said.

  I wished his office had been open right then.

  After a long day of sessions, at the evening reception I ran into some WRTC friends. As we mingled and politely sipped our pinot grigio, a distinguished man with white hair and glasses joined us.

  “Sarah, do you know Dr. Carlos Fernandez?” someone said.

  I had never met Dr. Fernandez but always hoped I might, because he was the medical director of WRTC, and the surgeon who recovered Thomas’s liver.

  We made small talk for a few minutes, and then I plucked up the courage to say what I wanted to say.

  “I’m a donor mom. My son was an infant, with anencephaly.”

  “I’m so sorry,” Dr. Fernandez said.

  “I understand that you are the surgeon who did his liver recovery.”

  “Oh, when was it?”

  I explained the circumstances of the recovery—the hospital, the time of day, the size of the baby. He said he remembered it.

  “The donation brought our family a lot of healing,” I said. “It was early in the morning. So thank you for getting up that early.”

  Dr. Fernandez and I sat next to each other during dinner that night and continued our lovely conversation. Later on, we had an epic time on the dance floor. As I said to one of his colleagues, “Don’t let the gray hair fool you—this guy has moves!”

  Shortly after the AOPO conference, I got news I’d long been waiting for. I could hardly believe it, but it was true: Jeff Thomas and Bill Proctor contacted me to tell me that yes, Thomas’s retinas had indeed been donated to a research facility. There had been a paperwork mix-up, which is why ODEF had no record of the donation.

  But NDRI did. The retinas . . . after all that.

  I knew I had another trip to make. And I couldn’t wait.

  SUE’S STORY

  Sue Scott was just thirty-six years old in July 2012 when her doctor told her there was nothing more he could do for her: her cervical cancer had metastasized to her lymph nodes, and she had tumors all over her body.

  “There must be options,” Sue said.

  She was met with silence.

  Radiation?

  She’d already had the maximum.

  Chemotherapy?

  There was none that worked for her type of advanced cancer.

  Sue Scott said, “Stick a fork in me. I’m done.”

  Nine months earlier, on Halloween 2011, after Sue had started to noticed some vaginal bleeding, she was handed down the verdict: she had a one-and-a-half-inch tumor in her cervix. The two most common types of cervical cancer are squamous cell, which begins in the cervical lining, and adenocarcinoma, which starts in the cells that make fluids. Sue’s was an aggressive adenocarcinoma that had likely been growing inside her for years.

  Some cancers are caused by environmental factors, such as smoking or exposure to other toxins, and some are genetic or caused by random mutation. Sue’s cancer was the result of an infection by human papillomavirus (HPV), by far the most common sexually transmitted infection out there; something on the order of fourteen million new cases occur every year.

  According to the Centers for Disease Control and Prevention, there are more than two hundred kinds of HPV virus, and 90 percent of men and 80 percent of women will contract at least one kind during their lifetimes. The good news, if there is such a thing in a disease that is so prevalent, is that most strains of HPV are deemed low-risk and do not cause cancer—just warts, a.k.a. condylomata acuminate, on or near the genitals, anus, mouth, or throat. But about a dozen strains of so-called high-risk HPV can cause cancer. Nearly all cases of cervical cancer, as well as most anal, oral, throat, and tonsil cancers, and a large percentage of vaginal, vulvar, and penile cancers, are the direct result of HPV infection—most commonly HPV types 16 and 18.

  The U.S. Food and Drug Administration has approved three vaccines against high-risk strains of HPV: Gardasil, in 2006; Cervarix, in 2009; and, in 2014, Gardasil 9—which covers, as the name suggests, a total of nine strains. These new drugs provide excellent protection against new HPV infections, including the high-risk strains, thereby preventing as many as 90 percent of cervical and anal cancers, but they don’t help patients who already have an infection. Given the size of Sue’s tumor, she had probably contracted HPV before any of these vaccines became available.

  Cervical cancer used to be a significant cause of death for women of childbearing age in the United States, according to the National Institutes of Health. But with the introduction of the Pap smear in the 1950s, which allows doctors to examine cells under a microscope to look for abnormalities, the frequency has dropped dramatically, since precancerous lesions can be treated or removed before they turn malignant. In other words, regular screening makes the disease rare, and highly treatable if caught early. That said, of the approximately twelve thousand women who do develop cervical cancer every year, about four thousand will die of it. Unfortunately for Sue, her cancer wasn’t found until it was pretty far along.

  After her diagnosis, Sue’s doctors put her on a standard three-part course of treatment for a patient with her degree of disease: external radiation—also known as external beam radiation therapy, or EBRT—in which X-rays are beamed at the cancer from outside the body (like a regular X-ray but with a much higher dose of radiation); internal radiation, or intracavity brachytherapy, in which the radiation material is put in a metal tube that is then inserted into the body, applying the radiation directly to the cervix; and finally, a course of low-dose chemotherapy.

  Sue thought, “Some of everything. I guess that’s good.”

  When her treatment was complete, a CT scan found no detectable signs of her tumor.

  But three months later, Sue Scott found herself with new and worrying abdominal pain. This time, her doctor prescribed a positron emission topography, or PET, scan, which found that her cancer not only had returned, but had spread catastrophically. Sue had tumors on her liver, her bladder, her uterus, and her abdominal wall and in the lymph nodes in her groin and chest.

  What Sue hadn’t known at the start of all this was that the standard course of care works for only 65 percent of cervical cancer patients. Sue was one of the 35 percent for whom it didn’t work. With the results of the PET scan in hand, her doctor informed her that there was nothing he could do.

  It was time to see what else was available.

  Sue Scott first met with an oncologist at the National Institutes of Health, who said, “We have a chemo that we’re trying on HPV cancers. We haven’t had a lot of success with it yet, but we can do that for you.”

  Trying to maintain a positive outlook, Sue said, “What’s the success rate?”

  “We’re not talking cure here. We’re talking slowing the growth.”

  “Well, I’m talking cure. Is there anything for cure?”

  At this point, Sue’s mother had been, by grim coincidence, diagnosed with uterine cancer, and had had a hysterectomy. Sue paid $350 out of pocket to get a consultation with her mother’s surgeon; he was her seventh doctor in nine months.

  This new surgeon told Sue that, depending on what he found when he opened her up, she might need, at the least, a radical hysterectomy, which would take out her uterus, cervix, and ovaries. At worst, he discussed the possibility of something Sue had never even heard of: exenteration. As the American Cancer Society describes it, exenteration is the most extensive pelvic surgery—a procedure so drastic you can’t imagine someone thought it
up. It is performed when a woman has experienced a recurrence of cervical cancer, as Sue had. The surgery removes not only the reproductive organs that are excised during a radical hysterectomy, but also the vagina, bladder, urethra, and rectum. It is called a total pelvic exenteration if the surgery also includes two ostomies, or surgically made openings: one for urine, called a urostomy; and one for stool, called a colostomy.

  “Basically, they would cut off my lower half and stick my legs back on,” said Sue, employing admirable gallows humor.

  When Sue woke up from the surgery, she didn’t know how much of her body she still had. So she asked her mother, Sharon, who was with her in the recovery room, “Do I still have my vagina?”

  “You do. Your rectum and your bladder, too.”

  Sue was understandably relieved—until, that is, the surgeon came in to see her. It turned out that her cancer was so extensive that there had been no point in the most debilitating surgery since it wasn’t going to cure her cancer.

  It was another great blow, and Sue thought she’d hit another dead end, until the surgeon said, “At this point immunotherapy is your only chance.”

  “What the heck is that?”

  “Basically, it’s a way of enhancing your body’s own immune system to fight the cancer. I don’t know if there’s a clinical trial for your type of cancer, but I’ll look into it.”

  Sue was finally in luck. Through her surgeon she learned that Dr. Christian Hinrichs, of the National Cancer Institute in Bethesda, Maryland—which is part of the National Institutes of Health—had just started an immunotherapy trial that May. This is how her first conversation with Dr. Hinrichs went:

  “How many people are in your study?” Sue asked.

  “Four.”

  “The entire study is four people?”

  “Yes.”

  “Is it working for any of them?”

  “It’s too early to tell. We’re only three months out. We have one patient for whom it seems to be working. She has had some tumor reduction. The other three have not.”