Mom Talk: One Liver, Two Kids Later
Written by Eunice Ross
Photography by Photo Courtesy of Eunice Ross
The fragile, unpredictable nature of life has been hammered home for many of us over the last two years. And for San Francisco-based writer Eunice Ross, this dose of reality came a year before the pandemic, when the man she recently married was diagnosed with a life-altering condition. Below, she shares her story of starting a family on an accelerated deadline.
The sterile aesthetic of the hospital waiting room brought me an immediate feeling of dread and discomfort. I kept looking at the clock in the corner wall and anxiously waited for the phone to ring to tell me that my husband’s procedure was over. When I finally heard the phone ring, my adrenaline kicked in as the ominous voice on the line said that Josh was out. I clutched my sister’s hand as we walked through the empty hallway with doors opening automatically into the recovery room.
There he lay conscious in bed, chatting with the nurse like he just struck a friendly conversation with a stranger at a bar. Seeing him lucid gave me an immediate sense of relief. He was still coming out of anesthesia, and the nurse told us that the doctor would be in shortly. Josh smiled. He asked the nurse, my sister, and me to spell anesthesiologist backwards. Knowing Josh after a few drinks of whiskey, he is as annoyingly smart as he is silly. He slurred spelling out anesthesiologist at the top of his lungs. I tried to focus on what the nurse was saying, but his impromptu spelling bee performance distracted me. His silly behavior brought light to a serious situation. He spelled it again and again, which prompted all of us to laugh in unison.
When Josh and I met, we watched the San Francisco Giants play the Detroit Tigers during the 2012 World Series at a bar together. I wasn’t a huge baseball fan, but it was the second time our home team made The World Series in two years. I couldn’t resist taking part in the city’s electric energy. I’ve never seen so much camaraderie among fans. People were out and about, watching the game at every restaurant and bar. The city’s atmosphere became alive and intoxicating. It practically begged everyone, including me, to be a bandwagon fan.
When I walked into Perry’s to meet my friend, she casually introduced me to Josh, her other friend. People were packed liked sardines. I split my time catching up with my friend while tracking the innings on TV and pretending I knew what was happening. Josh, with his orange shirt and light-washed denim, stood behind me for most of the game. “Sorry,” I said, turning around. “There’s not a lot of room. I didn’t want you to think that I was being rude and ignoring you.” “It’s ok,” he cleared his throat. “Your hair smells nice.”
His awkward response became the story I loved to tell when asked how we met. After months of dating, he admitted that he tried to make a funny joke about my hair though it sounded creepier than he intended. While our meet-cute could have gone the wrong direction, I was instead charmed by his awkward attempted humor. I wasn’t put off by the joke. Knowing my social awkwardness, I gave him a chance, and we ended talking for the rest of the night. Our connection was immediate. Once the game ended, celebrations crowded the streets; I took a leap and grabbed his hand as we walked out of the bar together. Four years later, we were married. We picked New Year’s Eve as our wedding date to ring in 2017 with our loved ones together. Our official wedding hashtag was #RingingInRoss, with Ross being my new married last name.
We went to Portland to celebrate the following New Year’s Eve. During our dinner anniversary celebration, Josh started to experience pain in his lower abdomen that would not go away. When the pain started to become unbearable, we went to the hospital emergency room. It wasn’t how I imagined spending my first anniversary. An unwanted surprise interruption to our romantic getaway, all I wanted was for Josh to be in and out of the ER as quickly as possible. Instead, we stayed for hours confined in a room a few feet away from a green privacy curtain that separated us from the medical staff who were wishing each other a Happy New Year. Unable to identify what was happening, the doctor admitted Josh to the hospital because of his elevated liver enzymes. This led to a series of blood tests, ultrasounds, stent procedures, and ultimately an autoimmune diagnosis of his liver.
Josh has Primary Sclerosing Cholangitis or PSC. No one I know has heard of it, and when you Google it, “PSC life expectancy” was a top related search. The condition of Josh’s liver wasn’t clear at the beginning of his diagnosis. Up until this point, we hadn’t spent that much time in hospitals. A year after we became husband and wife, we became the patient and caregiver. While the vows of marriage include “in sickness and in health,” being a caregiver to my husband’s incurable disease wasn’t a role I expected this early in our marriage.
Josh’s first procedure was having a stent inserted into his liver’s bile duct to open up the clogged passage. Convinced that his organ could fail any day, we both thought that he needed a transplant to survive. When we shared the diagnosis with family members and friends, some willingly volunteered to donate their liver despite not knowing the details of a transplant. Each time someone said, “sign me up,” Josh cried. To him, it was synonymous with another three-word phrase: I love you.
Before going into his stent procedure, I looked at Josh. I was scared for him. A mental list of what-ifs was going through my mind like a deck of cards with each one presenting our future. The image that kept coming back over and over was our child together. I pictured us happy and present as we held her hand in an open field like the closing scene of a feel good movie. This is what I truly wanted. When I told Josh, he confessed that he wanted the same thing. By the time he was discharged from the hospital, we both knew we would try to start a family.
As we navigated life with PSC, we were surprised and relieved to find out that Josh’s liver was not at the end-stage like we initially thought. Instead, it was a wait-and-see approach for when he would need a liver transplant. But with every doctor visit and every blood test scheduled, Josh’s disease served as a constant reminder to move forward with our lives. PSC became the catalyst that started our family. We welcomed our daughter two years after the diagnosis, bought a home in San Francisco the same year, and even got a puppy. We re-claimed our wedding anniversary and made happy memories by traveling to and ringing in the 2020 New Year in New Zealand. We couldn’t let the diagnosis cripple our lives.
Because there are no effective treatments or therapies for the disease, our glimmer of hope came when Josh was selected to enroll in a clinical drug trial. As part of the three-year participation, we were not allowed to get pregnant while on the drug. Knowing that the clock was ticking for his disease’s progression and our fertility, our circumstances forced us to discuss having another child before the trial started and when our daughter was eight months old.
We went from answering, “Should we have a baby because of your failing liver?” to “Should we have another baby to explore saving your liver?” I didn’t know how I felt about having a second kid. My body was still healing from the first one. I knew that Josh wanted to expand our family even without explicitly telling me. When our daughter was born, I could tell that fatherhood gave his life a new purpose. There was unintended pressure to say “yes” because the situation forced my hand to decide, since we didn’t know what would happen. What if we wait until after the drug trial to have another child? Or what if we pursue IVF during the trial? Our heads were spinning, discussing our options. “The train is already running, might as well stay on,” a friend of mine said about motherhood once. We were lucky to conceive again so soon, and nine months later, we happily welcomed a son.
When I was in my first trimester, Josh began the preliminary requirements of the clinical drug trial. During his liver biopsy, a thin needle was inserted in his abdomen to remove a small piece of tissue. At this moment, I was reminded of how big we had to live our lives for the sake of fixing and treating something small, even microscopic. The drug trial stopped accepting new candidates when the pandemic happened, and Josh was automatically ineligible to participate. Our hope returned when the trial reopened as the lockdown began to lift, but COVID-19 took a turn for the worst, and we received word before Josh could participate that the trial was closed indefinitely.
Sometimes we joke that we made two babies thanks to Josh’s still healthy liver. I asked him once what his wildest dream for our children would be, and he answered without hesitation, “to see them grow old.” We’ve been grateful to live each day as a family, and while PSC lurks in the shadow, I find comfort in knowing that the reality we wanted is here and our family is complete.
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