This past February, just a few weeks after our daughter Porter was born, Stacey went to see an ENT doctor because she had been having trouble swallowing throughout her pregnancy. Prior to this she had been assured multiple times by her doctor that this was a “normal” pregnancy symptom.

We were expecting Stacey to be treated for allergies or something minor. Instead we were told that she has a very large tumor in her throat almost entirely blocking her airway, and that it needed to be removed as soon as possible before her airway was compromised. Within just a couple of days we quickly got several opinions and learned that a variety of highly specialized multidisciplinary surgical teams were needed to safely remove the tumor. With the help of a dear friend, we were able to get Stacey urgently seen by a surgeon at Johns Hopkins Hospital.

She was soon admitted to Hopkins and immediately underwent an awake tracheostomy, in which a breathing tube was placed into her throat, as her breathing had become more difficult. The tracheostomy allowed her to breathe, but left her unable to speak, hopefully temporarily until the tumor is removed. Her surgeon said that had she been admitted even a day later, the tumor may have entirely blocked her airway, thereby cutting off her ability to breathe completely. A few days after the tracheostomy, Stacey had another surgery for the placement of a feeding tube in her stomach because she could no longer swallow any foods, solid or liquid. 

After reviewing the MRI and CT Scan of the tumor her doctor decided that she needed to present her case to the Johns Hopkins Tumor Board. The consensus was that Stacey has a “one of a kind tumor” that is unlike any tumor the surgeons at Hopkins have seen before. We are so grateful to have the care of so many experts in such a wide variety of medical fields. The Board recommended immediate next steps, and she is scheduled for an embolization procedure and then a surgery this Thursday and Friday. The goal of these surgeries will be to try to safely remove as much of the tumor as possible while trying to preserve her ability to swallow and speak. Additional surgeries are likely and at this point we don’t really know what the future will hold.

Stacey has now been in the hospital almost three weeks and will likely remain here for two to three more. The doctors said we should prepare for her needing to return to the hospital for a second surgery three to eight weeks after this one. We have a long road ahead of us.

The hardest part of our time spent in the hospital is being away from Bennett and Porter, and our dog Benny (aka, “Frank”). We miss them terribly. Porter was 8 weeks old when Stacey was admitted and now she is 11 weeks and just learned how to smile. Bennett seems to be growing taller and more inquisitive every day.  My parents have been tirelessly caring for our children and we are forever grateful. FaceTime helps, but our hearts hurt from missing them.

The prospect of losing the ability to speak would be scary for anyone, but for Stacey, her identity is so intricately tied to her voice. 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. Her voice has powerfully brought to life countless characters, young and old, funny and profound. Her voice was a comfort to the communities she visited in South Africa, Morocco, Ghana, Rwanda, and Tanzania. And in this latest decade of her life, she uses her voice every day to empower others to tell their own personal stories and proudly be their authentic selves. She believes in the art of storytelling for healing, to help people make meaning of this world and to find what connects us all. Her voice helps so many to feel the love in their own lives, and to learn to foster that love in order to spread and share it abundantly. 

With or without a speaking voice, Stacey will continue to work to make the world a better place. Though she hasn’t had a voice for the last two weeks, Stacey has befriended many staff members at Johns Hopkins and receives hugs during the laps she does in the hallway. She makes a point of getting the attention of all who enter her room. Whether someone is changing the garbage bag or giving medications, she finds ways to say thank you, to make sure that all those who enter feel seen and valued. Faced with so much pain and uncertainty, she still radiates light in her uniquely Stacey way.

In these coming days, as we see what will unfold, please hold her and our family close to your heart.

Many friends and family members have already asked us how they can be a support at this time. Here are some ideas: a text of support, a video message, a meal dropped on the porch, books or activities to help Bennett during this time when he is missing his “Mama and Dada” so much. If you’d like to help in any of the above ways or have other ideas, please email: [email protected] for more information about how to help.

Contributions from this fundraiser will help our family with expenses such as in-home nursing care, speech and swallowing therapies, additional childcare, parking, hotels, transportation to and from the hospital, meals, etc., . Please feel no pressure to make a monetary donation. Just thinking of us and keeping us in your hearts makes us feel such deep gratitude.

Although this is a scary chapter of our story, we feel the love and care of our friends and family gently taking us by the hand as we move forward, one breath at a time. 

Sending love to our village, both near and far.

With deep gratitude,

Jaime