A Life Everlasting (18 page)

Finally, at the beginning of February, after the clots in her lungs had resolved, she was accepted into the trial. In the six months since she had first approached Dr. Hinrichs, only three other patients had been accepted, making Sue patient number eight.

The first step was to put in the stent to fix Sue's kidney problem, and it worked out great: no infection. Then she had surgery to remove the tumor on her liver to isolate the T cells to be subsequently grown in the lab. It would take five weeks to grow a sufficient quantity, and Sue, being Sue, figured that was enough time for an adventure.

Sue and her mom, Sharon, had always wanted to go to Australia, but Sue figured that now they weren't going to get there. When she said as much to her mom, Sharon said, “Oh, we're going to Australia.” The doctors at NIH thought a seventeen-hour flight each way was a bad idea for someone with late-stage cancer—not to mention that while they were there, they would be spending their time in the outback, a hundred miles from the nearest hospital.

It hardly needs to be said that Sue and Sharon went to Australia. When they got back, Sue was energized and ready for the most difficult three weeks of her life.

During her first week back, Sue received chemo to knock out her own immune system. She lost her hair and felt sick to her stomach. At the beginning of the second week, a nurse brought in an IV bag filled with what looked like condensed milk.

Sue's brother, a super-smart math guy, was in the room at the time, and as the nurse hung the bag up on the IV stand and arranged the tubing to begin the infusion, he asked her, “Do you know how many cells are in there?”

“We sure do. There's actually a calculation on this bag that tells us how many are in there.” The nurse looked at the bag and began to read off a complicated equation. “I think that comes to seven and a half billion cells.”

Sue said, “Wow! Incredible there are so many in that little bag!”

When the nurse left the room, Sue's brother said, “I think she might have gotten the equation wrong and it's more than that.”

“How could it be
more?”

A few minutes later, with the infusion complete, a doctor came in to check on Sue.

“I'm Dr. Yang,” he said. “How do you feel?”

“I feel seven and a half billion cells heavier,” Sue joked.

“Seven and a half? Who told you that?” the doctor said.

“One of the nurses.”

“Well, she missed a decimal place. You're actually seventy-five billion cells heavier.”

Her brother smiled and gave her a look that said, “I told you so!”

Sue was amazed how fast and painless the infusion had been. But then the really hard part started.

The next day, Sue began to receive doses every eight hours of interleukin-2, a protein that encourages the TILs (tumor infiltrating lymphocytes) to grow. By the time she received the fifth dose, she couldn't eat and she required oxygen full-time. The next few days were even more brutal, but at the end of the twenty-one days, Sue managed to walk out of the hospital and head home. Now, all she had to do was wait.

Two months later, miraculous news arrived: there was no detectable trace of tumors on Sue Scott's scans, and her lymph nodes had returned to normal.

Doctors have continued to check Sue every six months, but as of 2015, Dr. Hinrichs was able to tell her, “I think you're in the clear.”

The science that led to Sue's miraculous recovery—one she never expected for herself—is complicated and changing all the time. “It's a fast-moving target,” as Dr. Hinrichs puts it. But Sue, now an advocate for NIH, has come up with an amusing way of describing what saved her life:

“I tell people that my immune cells were like these superintelligent little nerds with pocket protectors that knew my cancer was
there and it wasn't supposed to be but they didn't have the strength to more than say, ‘Excuse me, I don't think you're supposed to be here.' The doctors took out those little nerdy cells and they sent them to kung-fu school, trained them how to find the cancer cells and kill them, and then they put them back in. Those same cells went and found my tumors and were like, ‘You need to get the eff out,' like bouncers at a bar. Those little nerdy guys came back with a vengeance and went all through my body and found the tumors and kicked them to the curb.”

Sue's case was written up—sadly, without any reference to nerdy cells and bouncers—in the March 2015 issue of the
Journal of Clinical Oncology
. The article gives the game away even in its very title: “Complete Regression of Metastatic Cervical Cancer After Treatment with Human Papillomavirus-Targeted Tumor-Infiltrating T Cells.”

There were a total of sixteen patients in the trial in which Sue participated; only she and one other woman saw their tumors go away. Another woman had some shrinkage of her tumors, but it was temporary.

In the other patients, sadly, there was no response.

What researchers learned in studying Sue's cells versus the cells of the women who did not respond to the treatment was that the patients with the greatest reactivity against HPV antigens were the ones who did the best in the trial. As a result, doctors now know that potential patients who have a similarly high level of reactivity will have the greatest likelihood of responding well to treatment; and those without the reactivity can be spared a difficult protocol that would cause them unnecessary misery.

Sue Scott didn't offer herself up for the NIH trial expecting to help herself; rather, she thought she might at least help the next woman unlucky enough to find herself in the same terrible shoes. But Sue was fortunate in two ways: The first was that she got sick
when she did; if she'd received the same diagnosis even a year earlier, there wouldn't have been a trial for her to join. The second piece of good fortune was that the trial protocol worked spectacularly well for her.

The long-term benefit for future patients because of what Christian Hinrichs and his team at NIH learned from the trial is boundless. A handful of patients, only two of whom recovered, have, through their contribution, furthered and augmented the arsenal that medical science has to combat what was once a near-certain death sentence.

And for Sue, she gets to advocate for change with a smile on her face and a joke at the ready.

T
he news about the retinas was fantastic. And it meant I started to hope that I could make one more trip to meet the scientists who were working with my son's donation.

As I thought about ways to most effectively connect with Thomas's retina researchers, I figured I'd try a new tactic. In keeping with the style of the letters that are often written from donor families to transplant recipients, I penned a “Dear Researcher” email. In it, I explained who I was and what had happened, and asked if they could tell me why they had needed the retinas. I also broached the subject of a lab visit one day.

In September 2014, I sent the email to Christina Jenkins—associate director with Old Dominion Eye Foundation—and asked her if she could forward it to the person who had wanted the retinas. She said that ODEF had never done such a thing before, and though she could not guarantee a response, she would give it a try.

It took two days.

On September 25, 2014, I received an email from Dr. Arupa Ganguly, a professor in the Department of Genetics at the Perelman School of Medicine at the University of Pennsylvania. Dr. Ganguly thanked us for the donation and explained that she was studying retinoblastoma, a rare but deadly cancer that affects children under the age of five.

And yes. My family was welcome to visit her lab.

A few days later Dr. Ganguly and I spoke on the phone. I could feel my heart beating hard; I would never get used to connecting with Thomas's “colleagues.”

“It is an honor to talk to you,” Dr. Ganguly said. Imagine—an honor. This was almost too much. “I can't imagine how you must feel,” she went on. “Thomas made the ultimate sacrifice.”

Whoa, whoa, whoa
, I thought.
Sacrifice? We didn't kill our son just so we could donate his body to a study
. The word seemed to imply that she felt guilty, or somehow indebted to me, and it took me by surprise. I didn't want her to feel that way at all.

“I don't see it that way,” I said. “If you hadn't wanted Thomas's tissue, it would have been buried in the ground where it wouldn't be helping anyone. Our choice was not between an alive child and a dead child. We would have picked the alive child, of course. So our choice was between burying our dead child and donating his tissue. Donating to your study added a layer of meaning to his life that was not there before. So we are very grateful he could be part of your study.”

I asked Dr. Ganguly if she remembered receiving the tissue; after all, it was almost five years earlier.

“Yes, I remember that day. I have a log book, but I don't need to look in it. It's the only healthy tissue sample we received in six years.”

Dr. Arupa Ganguly had been waiting on a sample like
Thomas's
for six years
? I was floored. It validated my hunch that donating for research was worth the effort. It did matter to someone—and it mattered a lot. Arupa told me that the tissue was so precious she was saving it, because she didn't know when she might get more.

And then she said something that stopped my heart.

“I still have some of it in a lab freezer. You can see it if you like.”

Yes, I wanted to see it. Seeing Thomas's journey from the very beginning to the very end—how many people get to do something like that? To see what a donation looks like, and understand what it means. And to be in the presence of a lost boy's RNA.

It had been one of the most meaningful phone calls of my life.

Yes, I wanted to see it.

The tour of Dr. Ganguly's lab was set for Monday, March 23, 2015, which would be the twins' fifth birthday. We decided to make a stop at the National Disease Research Interchange headquarters, too, ahead of our trip to see Dr. Ganguly. In the meantime, Arupa sent Callum a toddler-sized Penn T-shirt for his collection.

Ross, Callum, and I drove to Philadelphia a day early and spent the Sunday at the child-friendly Please Touch Museum. We had a dinner at an Irish pub and carried all of Callum's birthday presents up to our hotel room so he could open them in the morning. But I couldn't wait for the next day to arrive.

Callum woke up bright and early that Monday, eager to get on with our celebration of his special day. His favorite gift was a two-foot-tall Godzilla he had been talking about for weeks.

Our appointment at NDRI in Center City was set for 9:30
A.M
. When we arrived, an athletically wiry man in his fifties,
with a pair of reading glasses perched on his forehead, was waiting in the lobby. I had contacted the
Philadelphia Inquirer
to see if they thought there was a story in my family's trip, and they had sent the best of the best: Michael Vitez, a thirty-year veteran staffer with a Pulitzer under his belt for his human-interest stories.

In a conference room, NDRI president and CEO Bill Leinweber and about thirty members of his staff were sitting around a large table.

Bill thanked us for coming: we were, once again, the first donor family to request a visit. I introduced myself, Ross, and Callum to the assembled group.

I gave them my presentation about Thomas and the researchers I had already met, and I thanked them for making this journey possible. When I was done, I handed Bill a framed copy of a photograph of Thomas.

“May I have a high-res digital copy? I'd like to make an enlargement for the lobby here,” he said.

Bill presented Callum with a birthday card and several stuffed animals as presents. I went around the room introducing myself to every member of the staff and thanked them for the work they were doing. It was a privilege to meet the people who were vital to so many groundbreaking medical advancements.

Michael Vitez joined us in the cab for the ride over to Penn, where Maiken Scott of radio station WHYY—I'd contacted NPR, too—and her photographer, Kimberly Paynter, met us. Joining us was
Philadelphia Inquirer
photographer David Maialetti. It was quite the media crowd.

Jessica Ebrahimzadeh, a genetic counselor working in Dr. Ganguly's lab, and senior science communications manager Karen Kreeger were waiting for us. It was a sprawling complex, and
we were led through the labyrinth of hallways and elevators to Dr. Ganguly's fourth-floor lab in the Anatomy Chemistry Building. When we got to the conference room, Dr. Ganguly's staff and yet another photographer—this time from Penn—met us.

Dr. Ganguly had not yet arrived, so I took the opportunity to introduce myself to everyone else. “Thanks for having me,” I said. “It's an honor to be here, so thanks for letting this happen.”

I sat down next to Jennifer Yutz, the lab manager. “Do you remember Thomas's tissue coming here?”

“I do, yes.”

“Did it come in Styrofoam or a cardboard box?”

“Either.” Her hesitation made me realize that no one had ever asked Jennifer these questions before.

“Did it say Human Eyes on the side?”

There was a ripple of nervous laughter in the room.

“It did, yes,” Jennifer said, with a smile.

Eventually Dr. Ganguly arrived, and she quickly set about explaining why it was so important to have received Thomas's donation. It had been the first healthy infant retina sample her lab had ever received, and it was vital to her work.

In order to understand the uncontrolled cell growth of cancer, Dr. Ganguly needed to be able to compare diseased eye tissue with healthy eye tissue. She had samples of diseased tissue, but, as she put it, “there is no normal situation in which one can get a healthy sample.” In other words, a child had to die for her to get what she needed to complete her study. I remembered James Selby Jr.'s poem from the donor family gathering:

For me to live,

you had to die.

While my family rejoiced,

your family cried.

But it wasn't just that a child had to die. The logistics of collecting the tissue—which had to be done within four hours of the death, with the tissue then placed in a particular solution so that the DNA and the messenger RNA (mRNA) were not degraded—made viable healthy samples very rare.

“Please don't feel guilty about it,” I said. “You didn't make my son die.”Then I repeated for all to hear what I'd said to her during our initial phone call: “If you didn't have his tissue, it would be in the ground not doing anybody any good.”

Dr. Ganguly smiled. “That is a relief to hear. Thank you, Sarah. When I first learned that you wanted to come here, it immediately changed my perception of my work. When we received the sample in 2010, it was simply entered into a database and assigned a number. Thomas is RES360. It's completely impersonal. But now, here is a mother who has lost a baby boy. It made me sad, because now this sample that had been so good for my research was connected to a deceased child. Then I wondered how I would react. Would you like to know what we did with your son's eyes?”

“I'm happy that you have them,” I said. “Share what you learn with the medical community, and share it with us when you can. If you get published, that would be cool.”

I gave Dr. Ganguly a framed photo of Thomas, like the one I had given Bill Leinweber, with a brief inscription commemorating the date of this visit.

Thanking everyone for their time, Dr. Ganguly took us to her lab.

As we walked down the hall, Callum ahead, and I heard him say, “Oh!”When I got there, I found him with his arms wrapped around a large inflatable dinosaur, a surprise gift from Dr. Ganguly. He didn't lose the smile—or let go of that dinosaur—for the rest of the visit.

Back at Dr. Ganguly's office, Jennifer Yutz joined us again and showed me a black-and-white marbled composition book. “This is our log book. We make an entry for each sample that we get.”

Jennifer opened the log book to a page with an entry for March 30, 2010. As the 360th specimen the lab had received, it was assigned the number RES360.

“Oh my gosh, that's him! Ross, look at this!”

There was Jennifer's handwriting; she had personally recorded Thomas's donation.

Then they showed me the FedEx envelope that Thomas's retinas had arrived in.

“Can I make a copy of these?”

“We have copies for you.”

That shipping label felt like an heirloom to me.

Jennifer Yutz said, “Come with me.” We walked back through the lab toward a freezer across from a bank of student lockers.

Jennifer put on thick blue rubber gloves before opening the door and then pulled out a tray holding 1.5-milliliter vials. There appeared to be hundreds of them in that freezer. Jennifer pointed to two of them. “There,” she said. I leaned closer. “Careful, don't touch.” The ambient temperature in the freezer was minus 80 degrees Celsius, or minus 112 degrees Fahrenheit. (That's about 100 degrees Fahrenheit colder than the threshold for getting frostbite.) “That's the RNA that we isolated from Thomas's retina tissue.”

When I looked closely, I could see the handwriting in blue ball-point ink.

“RES360.”

That was it. That was Thomas's donation in those little tubes. They had saved some of his tissue because it was so valuable, and they hoped to use it again in the future.

RNA in a test tube is like a turtle on a fence: you know it didn't get there by itself. At that moment, I thought of all the people who had worked together to make it happen. Counting professionals connected with Inova, WRTC, ODEF, NDRI, and Penn, there were at least twenty-five people who worked together to make those little vials possible—not counting the people who helped improve and contribute to these processes over the course of more than fifty years of research. There was the person who invented the preservation solution; the person who figured out how to recover eyes; the person who figured out how to extract RNA; the people who founded WRTC, NDRI, the Lions Clubs, Old Dominion Eye Foundation, the Penn Genetics Diagnostic Laboratory. The list was long.

It was a lot to take in, and not just for me: the lab staff had never met a donor's family before. I think we all needed a moment to take a deep breath. I had preordered lunch for the staff and the media, so we filled our plates, ate, and relaxed. I passed around the book of photographs of Callum and Thomas that I'd made for Callum and the memory box that contained Thomas's handprint and medical bracelet.

I asked some of the staff how they got into this field in the first place. One person said that when she was little she had been given a kit that showed you how to get DNA out of a strawberry—DNA you could see with the naked eye. Just when I thought she must have been the most science-focused kid in the world, two of her colleagues chimed in that they, too, had the strawberry DNA kit as a child. I realized then that these people were really in the right job. Dr. Ganguly told a story about getting hit by a car on the way to lunch, and still attending the U.S. Supreme Court to watch the proceedings of a historic case about patenting genes in which she was a plaintiff.

“You lead an exciting life,” I said, and noticed that the staff
all nodded and laughed in a way that betrayed their affection and respect for their colleague.

Further evidence of the passion of these amazing people came when someone chimed in that they intended to offer Callum an internship.

“I won't be here by the time he's ready for that,” Dr. Ganguly said, but she had a smile on her face that seemed to say she would, in fact, make sure she was around then.

“I will be around,” Jennifer Yutz said. “I love it here. I'm not going anywhere.”

And with that, it was time to serenade the birthday boy with a rousing rendition of “Happy Birthday.” Callum blew out a candle, then tucked into his favorite treat—a sticky cinnamon bun. The staff even gave him a toy science kit with goggles and beakers.