Join Stacey In This Critical Cancer Journey

Dear Friends, Family and Caring Community, 

Just after midnight on January 2nd, 2023, our family was blessed with the arrival of our beautiful baby girl, Porter Grace. What should have been a special time for our family to adjust and appreciate the joy of being a family of four quickly turned into a time of separation, fear and pain.

Before I detail my wife’s current struggle with a rare cancer that has threatened her ability to breathe, speak, eat, and drink, I wanted to provide some background for those who may not know us.

Stacey and I met at a pumpkin carving party nine years ago. Our shared passion for public service and caring for children and adults in need brought us both to the Washington, DC area for graduate school. Our mutual friend offered his annual pumpkin carving party as the setting for a blind date. Stacey says that she recalls walking into a room and seeing me smiling, surrounded by kids, pumpkin guts everywhere. I recall her sweet hug goodbye. She had started to leave but came back up to me saying, “I’m a hugger!” and gave me a hug goodbye. We have celebrated that day every year for the past nine years and call it our Pumpkin-versary.

We dreamed of one day starting a family together and owning a home. We still pinch ourselves when we realize how many of our dreams have already come true. Stacey and I got married in September 2018. Despite the impending impossibly rare Category 4 Hurricane Florence headed to Virginia, the storm pivoted at the last moment and the sun shined down on us as we said our vows.

In the six years since, we have celebrated the births of children, Bennett Hudson and Porter Grace. Our kids, now 3 and 1 years old, bring us so much joy. Despite some “three-nager” moments and perpetual sleeplessness, we truly savor our time with them.

During her pregnancy with our daughter, my wife, Stacey, began experiencing difficulty swallowing. We shared our concerns with her doctor but were told that this was a common pregnancy symptom related to hormones that relax muscles in the body to prepare for birth and were told not to worry about it. Regrettably, her doctor was wrong.

Stacey's condition took a devastating turn six weeks after our daughter was born. During an appointment with an ENT to get help with the difficulty swallowing that hadn’t gone away after Porter’s birth, we learned that she had a large tumor in her throat that by that point was almost entirely obstructing her airway. Quickly after the tumor was discovered, she was admitted to Johns Hopkins Hospital and underwent a painful and traumatizing awake tracheostomy and had a feeding tube placed in her abdomen.

Upon leaving Johns Hopkins after a 35-day hospital stay, we finally received the biopsy results. To our and her doctor’s surprise the pathology report showed that the tumor in Stacey’s throat was an incredibly rare cancer that only one in a million people are diagnosed with. This cancer was so rare that the lab ran their analysis multiple times to ensure the accuracy of the diagnosis. Having been told by several different specialists that the tumor, in their experience, did not have obvious traits of cancer, we were all shocked and scared when we learned that the biopsy results indicated that she not only had cancer but had a rare and life threatening cancer. What we thought was the end of a month of hospitalization and trauma was only the beginning of a year of fighting for Stacey’s life that continues today.

Soon after the biopsy results, we learned that there is no treatment for this type of cancer other than surgical removal. Chemotherapy and radiation can sometimes slow its growth but these treatments cannot eradicate the cancer. In Stacey’s unique case, treatment could also permanently damage her vocal cords and throat and complicate any future surgical options. At this point we were being told by her team at Hopkins that to save her life she would have to lose her vocal cords and therefore permanently lose her voice and the ability to breathe without a lifelong tracheostomy.

The prospect of losing the ability to speak would be scary for anyone, but for Stacey whose identity is so inextricably tied to her voice, it would be a devastating loss. Since she was a child Stacey has used her voice to speak out against injustice and to bring joy and love to others. She has sung and acted on stages all over the world, connecting with communities as both an artist and a clinician. She has worked in various HIV/AIDS and other community health settings in South Africa, Morocco, Ghana, Rwanda, and Tanzania. In the latest decade and a half of her life, she used her voice every day as a psychotherapist to empower others to tell their own personal stories and proudly be their authentic selves, and was promoted to the position of Director of the Behavioral Health Department at an LGBTQ/HIV specialized health center. In her private psychotherapy practice she dedicated the little time she had outside of her full-time job to help adults and children as young as three and their families navigate gender identity exploration. Whether mentoring or teaching, as a therapist, a friend, a wife and as a devoted mom, she has used her heart and her voice to help so many people feel heard and loved. Countless patients have thanked her for saving their lives, giving them hope when hope felt impossible. She is loving and kind, known for her smile that lights up any room. She is also a fierce and tireless advocate whose voice has changed the world for the better.

Once the biopsy results were in, her team of doctors at Johns Hopkins were admittedly at a loss as to how to remove the tumor without removing both her vocal cords. Desperate to save her voice and further damage from this terrifying rare cancer, we decided to transfer Stacey’s care to Memorial Sloan Kettering Cancer Center in New York City.

Within weeks of our first call, a team was carefully appointed including a surgical oncologist, laryngologist, interventional radiologists, speech language pathologist, plastic surgeon, pain and palliative care specialists, and several other dedicated healthcare providers. We were told that though they have treated other patients with this rare cancer, they have never dealt with this type of tumor situated in such a complicated location. Without wavering, they took on our case and made clear that their goal was to come up with a treatment plan that would not require a complete laryngectomy, the surgery that would permanently rob her of her voice. However, they did not minimize the many risks, possible outcomes, and terrifyingly high rates of recurrence for this type of cancer. To put it simply, we were scared of what lay ahead, but grateful to have found a team that was determined to help while treating Stacey with humanity and respect, care that had been lacking in prior encounters with the health care system. 

There are many things that make Stacey incredibly unique, but no one wants to hear that the top cancer specialists in the world are stumped by your “unique” tumor! Her case was presented at multiple tumor board meetings, and a 3D model of the tumor and her throat anatomy was created as a way for the surgical team to develop an approach to removing the part of the tumor above her voice box. The goal of the surgery was to preserve her voice and attempt to improve her breathing and swallowing in hopes that she would ultimately no longer need the tracheostomy and feeding tube. The surgery that was ultimately decided on had never been done before. Our whole family temporarily moved to New York for several months this past Fall while Stacey underwent treatments and surgery. On October 19th, she underwent an 18 hour surgery. Teams of surgeons rotated in and out and worked together to remove the tumor and then reconstructed her throat using muscle and fascia from an incision made from her knee to her hip.  The tumor was removed and Stacey’s throat was reconstructed. Her one working vocal cord remained and though she would not be able to speak for the first several months of her recovery, her doctors were hopeful that she’d have a voice, albeit weak and hoarse. Only time would tell if she would regain the ability to breathe without a tracheostomy, to swallow her own saliva, eat foods, and drink liquids. We were also warned that there is a high probability of this type of cancer returning in her throat or other parts of her body. We were told Stacey will need to be monitored closely for the rest of her life. This particular type of cancer doesn’t go into remission, once you have it you have it for life.

We try our best to remain hopeful while dealing with challenges we could have never imagined. Stacey is in severe physical pain every day. The simplest of daily tasks, like walking, breathing, etc. are painful and require energy that can be very difficult to muster. Along with the physical challenges, Stacey’s health has taken a massive emotional toll on our entire family. Unfortunately, we also now face the immense financial burdens of cancer. This is where we humbly turn to our friends, family, and community for help. We have been so deeply moved by the generosity of so many people we know and many that we don’t know who have been able to donate funds through our GoFundMe fundraiser. We need your help now more than ever. We learned recently that Stacey’s employer in the job that she has loved and been devoted to for the past 14 years is terminating her employment. As a result, we will be losing our employee sponsored health insurance. The cost of the monthly cobra for medical coverage alone is over $4000 a month which exceeds Stacey’s monthly long term disability payment which is our only income. During this tumultuous time, I have had to be the primary caregiver for both Stacey and our children. While Stacey‘s health continues to be so precarious and our young children need care, I am not able to seek employment. Therefore, all of our living expenses, including our mortgage, utilities and food, have all been taken out of our savings which has dwindled quickly. Other costs include: transportation and other travel costs back and forth from our home in Virginia to Memorial Sloan Kettering Cancer Center in NYC, parking, lodging, childcare for our 14 month old and 3 year old during medical appointments and hospitalizations, groceries and food delivery, medical supplies not covered by insurance (many related to tracheostomy and feeding tube care), doctors office co-pays, medication co-pays, adaptive equipment (wheelchair, bath chair, sink extender, etc.), air purifiers and filters (needed for tracheostomy). These are just a few of the many expenses we are currently incurring.

For those of you who have met Stacey, you know that she brings light and love into every space she enters. Even if she loses her ability to speak, there is no doubt that she will continue to find new ways to use her gift of spreading love. Stacey will always work to help people to build connection, understand their own strengths and to find joy in life. My mom says that Stacey brought “sparkle” into my life. Stacey has brought many many positive things into my life, more then she may ever fully know. She has taught me so much about what it really means to understand someone and truly love them, unconditionally. 

On our wedding day, she promised to love me “fiercely” and with all of her might. That is how Stacey gives to all things that are close to her heart. She is passionate and wholeheartedly spreads kindness, generosity and love to all who have the pleasure of even simply crossing her path. 

The words she used the day of our wedding to communicate how she would love and care for me truly embodies her character and the love she has given to not only myself but to many people and communities during times of need. In this time, she is turning to us, her community who she loves fiercely, for support. 

Your support has and will continue to mean the world to her and enable us as a family to focus on Stacey's well-being and recovery. As she fights for her life, I don’t want financial worries to weigh on her mind. Your compassion and generosity will provide a glimmer of hope during this challenging time.  We deeply appreciate your consideration and support in our family's fight against this rare and relentless cancer. If you would like to support in other ways or have additional fundraising ideas, please email [email redacted]. Thank you for being part of Stacey's journey to recovery.   

With heartfelt gratitude,  

Jaime