5:55 p.m.—THE PHAGES ARE HERE!!! Dr. Abdel-Massih takes the cooler to the lab to prepare the first doses.
6:00 p.m.—Dr. Abdel-Massih brings three syringes into Mallory’s room, and delivers them to Dr. Pilewski. Dr. P empties one through a bronchoscope into Mallory’s right lung, and then a second one into Mallory’s left lung. He then administers a micro-dose intravenously. I ask Mark how long it’s supposed to take, and he tells me that Tom Patterson woke up from a month’s-long coma and recognized his daughter seventy-two hours after the phages were administered. Now there’s nothing to do but wait for them to work.
11/15/17—Diane
Mal started desatting around 7:00 a.m. UPMC docs paralyzed her chest to keep her from expending energy fighting against the ventilator.
Mark, Micah, Maria, Jack, Meryl, Danny, Eileen, Stacy, Cindy, Ron, Jesse, Marissa, Mich, Nicki, and Tyler are here for Mal, with Susie fetching food for all of us as we stand by in a minute-by-minute race with time.
11/15/17—Jack
I have to fight to wake myself up when I first hear the phone ring.
It’s Eileen. “You need to come to the hospital now.”
I throw on some clothes and run straight to the hospital. At the entrance to Mal’s room, I gown up and join Diane and Mark, who are stroking her hands and speaking softly to Mallory. Her playlist of favorite songs is on in the background. They see me, then step aside to give me time with her.
Mallory is on her left side, her body angled to encourage the flow of blood to her left lung, the one that isn’t completely overtaken by pneumonia. The right lung is completely saturated.
I sit beside Mal, holding her hand, squeezing it hard. Her vitals are terrible and visibly dropping.
“Mal…I’m really glad I met you…I want to thank you…for making me a better man…I love you Mal…always.”
I break down in the moment. I had only cried once this hard before, the night that Mallory’s Stanford doctor had said she’d have a year to live. Now here we are, fifteen months later, powerless. We had fought so hard—and she had come so far—but now she is slipping away.
When I leave the room to give others their chance to sit with Mallory, Dr. Pilewski takes Mark, Diane, Micah, and me aside. In the staff room, he informs us, in clear, simple language that irreparable damage has been done to her brain due to lack of oxygen. Mallory’s identity—her endless wit, fierce love of others, and inner spirit—is gone.
In that moment, we know it is time to let her go. She has endured enough. Diane doesn’t want to tell Mallory she is dying and makes the decision that our last words will be ones of hope.
Diane is resolute: “If anyone deserves to rest in peace, it’s Mallory.” Micah is sobbing. Mark is distraught. We walk back to Mallory’s room and join Meryl, who had stayed with Mal while we left to confer with the doctor. Everyone else is in the waiting room so it’s just family for the final moments. Doctors begin switching off the devices working so diligently to keep her alive. One by one, the whirs of each machine vanish.
Together we hold Mallory so she feels our love, each of us taking a hand, her head, a leg. We speak to her, saying, “It’s okay to sleep. You have the phage, it’s going to work.”
11/15/17—Diane
Despite everyone’s heroic efforts, our brave, beautiful, loving Mallory passed peacefully today at 4:52 p.m., surrounded by Mark, Micah, Jack, Meryl, Danny, and me. The phage therapy we got for Mal couldn’t be administered in time to save her but she will provide a lung biopsy so that researchers can learn from her case. Our hope is gone but Mallory’s memory will be a blessing forever.
*1 “Clear Lungs” by Jesse Karlan can be heard at jessekarlan.com.
*2 an excessive convex curvature of the spine
*3 meaning the donor had hepatitis C
*4 ear, nose, and throat doctor
*5 a device used to measure pulse and oxygen saturation
*6 the ENT treating Mallory’s vocal cords
*7 one of the surgeons on D’Cunha’s team
*8 a condition in which pus gathers in the area between the lungs and the inner surface of the chest wall
PART SIX
I have a strong urge to do something more…to write something that will change people, that will have an infectious influence on the way they think and feel that will last. I want to create a piece so moving that people are in disbelief. And I want it to be like handing people a pair of glasses, giving them a way of seeing something they didn’t even realize they weren’t seeing.
—MALLORY SMITH
11/18/17—Diane
Mal called herself a cockroach, saying, “CF keeps trying to kill me but I don’t die.” In fact, she knew dying was a real possibility and left this note:
WHEN I DIE:
When I die, the most important thing I want my parents to know is that everything I am (and all the things I’ve been able to do) is because of them. As a daughter, a granddaughter, and a sister, my relationships have always been lopsided, because I can never give as much as I take. I wish I could repay them for everything they’ve done for me. Everything my parents and grandparents have done since I’ve been born was with the single-minded purpose of keeping me alive and well and happy and motivated, no matter how much it meant sacrificing themselves. I’ve never felt like I could express how much it meant that they were willing to give and give without expecting anything in return; I’d write cards, buy gifts for the holidays and birthdays, but no gesture comes close to being big enough.
The tiniest moments have stuck with me in the most profound ways: that time my dad slept on a springy cot in my hospital room for the eighth night in a row, in hospitalization number twenty-something, and told me about how he felt when his own dad died (lost and lonely, like he had come untethered, all of a sudden lacking roots or a home); all the times my mom put my needs over hers and didn’t pursue the illustrious career she, as such a smart and hardworking woman, could have had; the times my brother offered to do my errands because I hadn’t slept or wasn’t breathing well; the hours Grandpa and I spent listening to symphonies and chamber music string quartets, bonding over Bach and Beethoven; sunny days spent sitting on the beach with Grandma in Hawaii throughout the years, joyous because we were together and by the water; lazy hours passed in the kitchen with Maria, debating the merits of Catholicism and the existence of God, knowing that despite our wildly different upbringings we would always be connected.
The most important thing they must know when I die is that none of these moments are forgotten, and they all contributed to me becoming a person who feels the world is a good place. I could have been a bitter person, might have felt cheated by getting stuck with a chronic terminal illness, if I weren’t born into a family that surrounded me with fierce love and unwavering support from my very first breath.
I hope to be remembered as a kind, honest, good-hearted person who worked hard and put others before herself whenever possible.
I would like to be cremated, and hope to be celebrated on the water, where I always felt most at home, and for my remains to live on there.
A big funeral party would be good, too, for those who are unable to paddle out or are not comfortable on the water. Overall, I want people to celebrate my life with joy for the time we had together, rather than mourning my passing.
POSTSCRIPT
by Steffanie Strathdee
I never had a daughter, but if I had, I would want her to be just like Mallory. People might find it strange that we never actually met, spoke, emailed, or texted. That’s because the first time I heard about Mallory, she was two months out from her double-lung transplant, fighting for her life against a superbug—B. cepacia—that threatened to devour her new healthy lungs. All her energy was expended on living. And breathing.
In early November 2017, her dad, Mark, reached out
to me through their family friend, Rebecca. I returned his call immediately and felt Mallory’s anguish through her dad’s voice. He and his wife, Diane, had heard about phage therapy a few years earlier, so they were excited to read the news that my husband, Tom, had been successfully treated for a superbug infection.
I learned about phage therapy when Tom’s dire prognosis caused me to look into alternative treatments. Desperate to see if phage therapy could save Tom, I reached out to my physician colleagues at UC San Diego and to researchers around the world. Together, we launched a “phage hunt” to find phages that would match Tom’s bacterium. At the eleventh hour, they found several matching phages and we obtained approval from the Food and Drug Administration to use it on a compassionate basis.
It worked. Tom’s recovery was a watershed moment in the strange history of phage therapy and the story went viral. But could it be a miracle for Mallory? Mallory’s family, her boyfriend Jack, and I pledged to do everything in our power to find out.
I turned to Twitter, pleading to phage researchers around the globe, asking if they had phages active against Mallory’s nemesis, B. cepacia. My message was retweeted 432 times. A colleague of mine at UCSD, Dr. Robert (Chip) Schooley, who oversaw Tom’s phage therapy, joined in the effort. We also turned to the people who had helped save Tom, phage researchers from Texas A&M and the U.S. Navy Medical Research Center, along with a new company that worked with them, Adaptive Phage Therapeutics (APT). A researcher from Alberta, Canada, Dr. Jon Dennis, who responded to my crowdsourcing tweet, agreed to assist, too. Mallory’s doctors sent her bacterial cultures to all the labs who had joined the phage hunt. The press picked up the story. Suddenly, the whole world was watching.
The wait was interminable. I knew what it was like, since I had been there myself. I sent Mallory a plush phage toy to give her hope while she was in the hospital. Mark, Diane, and I emailed and texted one another, Chip, and the other doctors around the clock. We waited only for a few days, but they felt like months.
The Dennis lab was the first to find a phage active against Mallory’s bacterial infection. They couriered it to APT’s lab for purification and expansion. While it was en route, the Navy found another phage with activity against Mallory’s organism. The team was energized. Just when it seemed that we were going to pull it off, Mark called me at dawn one morning to tell me that Mallory had taken a turn for the worse. Her doctors thought they could keep her alive, but only for a few more days. The phages weren’t yet scrubbed of all of the debris that accompanies them. And the phages had yet to be “grown up”—amplified—so that they existed in sufficient quantity to treat Mallory for at least a few weeks. The lab techs had pulled multiple all-nighters, but they were out of time. It was now or never; if we didn’t act now, Mallory would die. Jack, who has a Masters in Engineering from Stanford but knew nothing about phage therapy, suggested that the existing phage preparation be split in two, with one part to be administered in its existing “dirty” state, and the other half to be amplified and scrubbed for later use. It was an incredible idea that no one else had thought of.
Mallory’s family and friends were filled with hope when the phages arrived. Friends who had flown to Pittsburgh to be with Mallory took videos. Facebook lit up with hundreds of posts, prayers, and cheers. I watched from afar with bated breath, knowing that my job as a “phage wrangler” was done. It was the phages’ turn.
Chip coached the Pittsburgh doctors on how the phages should be administered, deciding they should be given intratracheally instead of intravenously, as they had been in Tom’s case. Mark suggested, and the doctors agreed, that Mallory should also receive a microdose intravenously in the hope that intravenously administered phages might be better equipped to reach their superbug targets. Every clinical decision was agonizing.
By the time the first doses of phage were administered, Mallory was no longer conscious. She received one dose intratracheally into each lung, and the intravenous microdose. Then we waited to see what would happen. The next morning, as the doctors were preparing the second set of phage doses, Mallory continued to deteriorate, prompting her doctors to explain that her low blood oxygen level had persisted long enough to cause irreversible brain damage. Mark and Diane made the most gut-wrenching decision parents will ever make: to remove their child’s life support. The moment I got Mark’s text that she had passed away, I was overcome with a deep sense of grief.
A few days later, Tom and I drove from San Diego to L.A. for Mallory’s celebration of life, held at a school in the Smiths’ neighborhood. The auditorium overflowed with more than a thousand friends and family members who sang, read poems, showed pictures and videos, and told story after story that reflected how special Mallory was. No one wanted it to end…to face the fact that she was really gone.
After the service, I wove through the crowd to introduce myself to Mallory’s parents. When they embraced me, I knew that we had become family and would forever be bonded.
At the reception, I met Jack. The pain in his eyes was almost too much to bear. I told him how sorry I was, but no words could capture what either of us felt.
“You and Tom were our inspiration,” he whispered.
“Mallory was mine. And still is,” I responded.
After I gave Mark and Diane big hugs, Mark pulled me aside and reminded me of something he had told me when we first talked on the phone. Had it only been a month ago?
“When I first heard about phage therapy,” he said, “I asked Mallory’s doctors if we could treat her before she had her lung transplant, so we could clear her infection and give her new lungs a chance.” I nodded. It made total sense. “But they had never heard of this treatment,” he continued. “They thought it was too risky and dismissed it. I can’t help but wonder if it could have worked.”
Even in their grief, Mark and Diane knew that Mallory’s death and experience with phage therapy could help others. They had a biopsy of Mallory’s lung sent to the Navy lab, where it could be examined to see if anything could be learned to move phage therapy forward. Although Mallory had received too few doses of phage and they had not been adequately prepared, the Navy team was extremely excited to confirm that the phages had found their targets and had multiplied in Mallory’s lungs! This microscopic piece of data offers insight into how to target phage therapy to treat future patients with CF and lung transplants.
Mark’s idea stayed with me. I shared it with Chip, who in turn shared it with Dr. Doug Conrad, who directs the CF clinic at UCSD. “It’s actually a great idea,” Chip told Mark and me later. “I hope we can give it a try someday.”
That day came just a few months later in 2018, when a twenty-six-year-old CF patient from L.A. with a multi-drug resistant Pseudomonas aeruginosa infection came to be treated at UCSD because her infection had made her ineligible for a lung transplant. Chip and Doug presented her with Mark’s idea. Did she want to try phage therapy? She decided to give it a chance. A few weeks later, her infection cleared. She returned to L.A. and was approved for transplant. Based on our experience with this patient and several others, in June, 2018, we launched the Center for Innovative Phage Applications and Therapeutics (IPATH) at UCSD, the first phage therapy center in North America. IPATH is in the planning stage for the first clinical trial of phage therapy among CF patients with multi-drug resistant bacterial infections.
Inspired by Mallory’s story and by my attempt to crowdsource phages, two young researchers, Drs. Jessica Sacher and Jan Zheng, took a bold step and created Phage Directory, a nonprofit database to help patients with superbugs find researchers to donate phages to their cause. The heroic effort to save Mallory’s life sparked an international movement to propel phage therapy forward as a legitimate treatment for superbugs, a movement exemplified by the recent establishment of IPATH. Mark and Diane directed Mallory’s Legacy Fund at the Cystic Fibrosis Foundation to make an inaugural grant of $100,000 to IPATH. As resistan
t strains of bacteria become more virulent and common, phage therapy holds out hope for a future cure when antibiotics fail us.
The most inspiring people are ordinary people who have done something extraordinary. Mallory’s legacy as a fierce young woman, determined to “Live Happy” while overcoming every medical challenge she faced, will live on in the words she left behind in this book.
ACKNOWLEDGMENTS
by Diane Shader Smith
After Mallory passed, and I struggled to accept that she was gone, her journals were the best source of comfort. I spent time every day for many months reading and rereading her words. Laughing, crying, cringing, cursing, I relived her life from the time she was fifteen to her death at the age of twenty-five. Knowing Mallory wanted to share the difficult parts of her story and having her trust me to do so gave me the drive to pursue publication.
My paramount concern was timing: determined to publish within a year (to support our efforts to bring phage therapy from the lab to the clinic, and to offer her words as a source of comfort to so many who loved her), I enlisted my sister, Meryl Shader, to help edit the selections I had pulled to prepare them for publication. We went back and forth for weeks, discussing which entries to use and in what order. Her expert editing was instrumental in helping me get the draft ready. She would continue to provide insightful comments and her immersion in the project enabled her to propose the perfect title. I then sent Lilli Colton the photograph of Mallory doing a headstand on the beach and asked her to design a cover. She did a beautiful job. Micah Smith read the draft and provided feedback with all the TLC a loving brother could offer.
Salt in My Soul Page 28