Moving across the country is stressful under the best of circumstances. Doing it in the midst of a cancer diagnosis and a life-changing genetic discovery? Overwhelming doesn’t even begin to cover it. When my family relocated from North Carolina to San Diego, I had no idea just how much this move would shape my medical journey.
Within 24 hours of arriving, I met with my surgical oncologist at Scripps, who immediately referred me to City of Hope. Within a week, I was connected with a genetic counselor, Anuja, and a geneticist, Dr. Idos—both of whom have handled my endless questions and sheer terror with so much grace. Dr. Idos could tell how scared I was about waiting months for a whole-body MRI to monitor TP53, so he reached out to me the next day with an appointment for the following week—just three days before my bilateral mastectomy and reconstruction. I don’t think he knows just how much relief that small act of kindness gave me during such a terrifying time.
The past eight months have been a whirlwind of medical appointments, tough conversations, and more scans than I can count. But amid the uncertainty, City of Hope has been a beacon. It’s not just a hospital; it’s a place where groundbreaking research meets compassionate care. A place where I feel like more than just a patient navigating a complicated diagnosis—I feel seen.
After learning about my LFS diagnosis and the high childhood cancer risk, we decided to have our daughters tested. In October, we learned that they both also have the TP53 mutation and were thus also diagnosed with Li-Fraumeni Syndrome. When the results came back, we were immediately connected with Dr. Gruber to begin the surveillance protocol. We met him on January 2nd, and he spent two hours with the girls, making them feel comfortable, laughing, and conducting a neurological exam. At that time, we also signed them up to participate in the LiftUp study, a study designed to scrutinize the differences in cancer risk associated with specific variants of TP53 mutations.
And just this month, while I was in North Carolina with my sister—who just had a prophylactic mastectomy—the girls traveled to City of Hope for their first MRI. My 8 year old, who has spent her entire life creating chaos at every medical and dental visit (seriously, if there was an Olympic event for “most dramatic vaccine application,” she’d have a gold medal), was able to get blood drawn, have an IV placed, and actually lay still in an MRI machine for an hour and half. I honestly don’t know what the child life specialists and nurses and techs at City of Hope do, but whatever it is, they deserve a standing ovation, a raise, and possibly medal of their own. Their blend of patience, magic, and perhaps a few carefully honed jedi mind tricks made the impossible seem like just another part of the day. They somehow turned what should’ve been a stressful, high-energy ordeal into a calm, smooth process. For that, I’m forever grateful (and maybe a little suspicious of their secret superpowers).
Two life-changing diagnoses in the middle of a move across the country was more than I thought I was going to be able to handle at the time. When speaking with Tarik, my husband, about how scared I was and how the timing felt unbelievably cruel, he reminded me, as he always does, of the silver lining—City of Hope. Being connected to a leader in cancer research and TP53 mutations/Li-Fraumeni Syndrome has given me so much confidence to deal with this diagnosis. Dr. Idos, Dr. Gruber, Anuja—they have shared knowledge and hope, giving us the opportunity to feel empowered rather than scared.
As painful as the timing was, as hard as it was to be moving away from my entire village at this time, I’m reminded that access to medical care and cancer research matters more than it ever has before. The move that once felt impossibly cruel has, in so many ways, become a lifeline. City of Hope has not only provided exceptional medical care but has also given us a sense of direction in the chaos. Their expertise, compassion, and unwavering commitment to patients like me and my daughters have made all the difference. In the midst of so much uncertainty, they have given us hope. And for that, I will always be thankful.
This journey has been overwhelming, heartbreaking, and at times, surreal. But it has also been one of resilience, connection, and gratitude. I never imagined I’d be navigating two life-changing diagnoses while also trying to build a new life on the opposite side of the country. And yet, here we are—taking it one step, one scan, and one silver lining at a time.
The Three Li-Fraumeni Muskateers
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