Rare Community Profiles: St. Jude Children’s Research Hospital Opens 45,000 Square Foot “Family Commons” to Support and Offer Comfort to Families

Rare Community Profiles

 

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Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

St. Jude Children’s Research Hospital Opens 45,000 Square Foot “Family Commons” to Support and Offer Comfort to Families

Made possible by a $50M donation from global biopharmaceutical company AbbVie, St. Jude Children’s Research Hospital opened the doors to the 45,000 square foot Family Commons, the first-ever treatment-and-clinical-staff-free floor at St. Jude with a purpose of providing a full suite of amenities to offer families what they need—whether that’s rest, art, food, play time, or anything in between. Family Commons opened its doors on February 7, 2023, and has already been conferring benefits to patients and their families.

Located on the second floor of the St. Jude Patient Care Center, Family Commons offers reading alcoves, resting nooks, play areas, an art room, private relaxation rooms, a cafe, a sacred space for prayer and reflection, centralized patient and housing services, classroom spaces, an event space, and parent-to-parent mentor meeting space (and more).

Recently, Jason Winkle—who is on the Patient Family Advisory Council and whose son Micah was treated at St. Jude—and Amanda Chandler, part of the Patient Experience Team, shared why Family Commons is so impactful for families and how they hope it will change healthcare approaches nationwide.

Jason and Micah’s Story

Although Jason, his wife, and their children enjoyed living in China, they always found comfort in returning to the United States to visit family. But during one visit, Micah began complaining about leg pain near his hip. At first, his parents weren’t concerned; after all, rambunctious nine-year-olds sometimes tend to innocently injure themselves.

The concern grew as Micah began avoiding outside activity or even using the stairs. His parents took him to the pediatrician, assuming they would just need some medication. But the x-ray showed a shadow and Jason heard the words no parent wants to hear: your child has cancer. He says:

“We had no idea what to do. Nobody prepares you for when your child has a catastrophic disease.”

Jason’s father recommended looking into St. Jude; as Jason read about the scientific and research-based approach, he knew it was going to be the best place for Micah. After a referral, the family headed to Memphis, where tests performed at St. Jude showed that his Ewing sarcoma—which began on the ball of his femur—had spread to the knee, pelvis, ribcage, and spine. By this point, Micah was fatigued; he struggled with appetite loss and severe weight loss.

The prognosis looked grim, but Jason enrolled Micah in clinical trials, something that St. Jude offers. After the first clinical trial, none of Micah’s lesions showed active cancer signs. Micah then began standard treatment protocol for Ewing sarcoma, underwent months of chemotherapy, and surgery to remove the tumor. Jason shares:

“St. Jude is committed to limb-sparing. Surgeons couldn’t give us any promises but were hopeful that they could save his leg, which they did. His femur was replaced with a telescoping rod. Since he was ten years old, the rod could be manipulated to grow longer without Micah needing additional surgery.”

In 2015, after more than 20 rounds of chemotherapy and additional surgery, the scans showed no evidence of disease; the family had a “No Mo’ Chemo” party. Micah eventually had his telescoping rod replaced with a permanent titanium rod, as well as a hip replacement.

Although he still deals with nerve damage, the 17-year-old is the 3x defending National US Champion in paraclimbing!

Joining the Advisory Council

After treatment, Micah was at high risk for relapse, so the family stayed in Memphis for a while. Wanting to give back to other families and support St. Jude, Jason volunteered to be a Parent Advisor, as well as serve on the Patient Family Advisory Council. As a Parent Advisor, he provides advice and guidance to families facing a new diagnosis. He shares:

“Childhood cancer is rare. For many families, their child with cancer is the only one they know. It feels isolating and disconnected. And if you have to travel for care, it can be overwhelming to leave everything behind. I tell families that being afraid and sad are totally legitimate ways to feel. You don’t have to try and cover those emotions, but you do have to find healthy and appropriate coping mechanisms. That’s why I think Family Commons is such an amazing space. It provides families with support, care for siblings, help with housing and food, and just gives families the opportunity to cope and process in meaningful ways.”

As part of the Patient Family Advisory Council, Jason and his peers bring ideas to the hospital about ways to improve the patient and family experience; St. Jude also presents at meetings to gain input on new programs. Says Jason:

“This has been a great opportunity for the hospital to gain valuable feedback on how families feel and think. We have questions, concerns, and a pretty diverse disease background so we can speak from different experiences. But I love that St. Jude is always asking how they can improve and what the real needs of families are. It has really expanded their commitment and desire to create this beautiful, open space.”

When it comes to Family Commons, Amanda shares that St. Jude CEO Dr. James R. Downing, MD came into the role envisioning a space where families could just be families—a space that offered normalcy among the chaos. She reaffirms Jason’s experience, sharing:

“The most impactful thing was that Dr. Downing went directly to patients and families, explained the vision, and got their input on unmet needs, what would bring joy, and what would be the most useful. Families came together to tell us what they wanted, and we made that a reality.”

Building Family Commons

In terms of Family Commons, Jason had a pretty hands-on role. His background is in construction. As St. Jude planned Family Commons, Jason was approached to provide feedback on wheelchair accessibility, enough space for families to maneuver through it, appropriate furniture (i.e. nothing that sticks out too far and could be hazardous for children with crutches or limited vision), and the need for a place to rest. He explains:

“Taking pills or dealing with treatment can be a high-anxiety time, and sitting in the waiting room or cafeteria can be overwhelming for patients. Resting nooks in Family Commons offer a place to lay down and get respite.”

Amanda adds that the resting nooks were directly related based on family insight and feedback:

“Our kids undergo so much treatment and it is physically, emotionally, and mentally exhausting for them—and also for caregivers who watch their child go through this. Prior to Family Commons, you could walk through the waiting room and see people waiting for a significant portion of the day. We developed 19 different resting nooks, all of which include a couch or chaise, low lighting, and sound machines, to give families a place to escape to. It is first-come-first-served to give the families autonomy with their time. We’ve already heard from so many people how amazing it is to have a space to rest while waiting on lab results.”

Another interesting element of Family Commons is the inclusion of full-time IS staff on the floor who can help the families with any technological issues or questions. Amanda shares:

“It can be really daunting for a family to not just have to learn and digest diagnostic information, but to learn about electronic health records, patient apps, or even how to print from the St. Jude network. Our IS staff will be available for parents to ask questions like, ‘How can I access my medical records?’ or ‘How can I make an appointment at the salon in Family Commons?’ I think we’ll continue to see this offering expand and become a blessing, especially for international families or families who speak a different language.”

The Impact in Month One

Family Commons officially opened over one month ago. Amanda saw its benefits that very day when she met a mother and her young son in the play area. The mother had been dreading bringing her child to the hospital that morning. He couldn’t eat or drink before his procedure, and she had no idea how to distract him…until she found Family Commons. Amanda says:

“It seems simple, but these families go through so much. Having these small moments of peace can be incredibly beneficial.”

On the second day, Amanda watched as a young boy and his sister did karaoke in the music studio. The brother sang “Billie Jean” and the sister, decked out in a princess dress, sang backup (before moving on to “Girls Just Want to Have Fun!”). When Amanda saw the music therapist in tears, she asked if everything was okay:

“The music therapist mentioned that the boy had been struggling. He had been in and out of in-patient status, didn’t speak much, and had been butting heads with his sister. Seeing them interact without fighting was just so powerful to her. To hear these stories is amazing. One of the most rewarding things about my job is seeing how joy and sadness can live in the same space, and how transformative that is for families.

When they are at their saddest and hardest points, when they feel like they don’t have anything left to give, St. Jude comes behind them in a variety of ways and carries that burden for them, even if just for a minute. We get to provide that. And I think it’s transformative because it gives hope. It gives them something to look forward to. When you’re watching your kid go through something so hard as a cancer journey, that’s really the best thing that you can give them.”

Ultimately, Jason views Family Commons as the new standard for patient and family-centered care in hospitals: a place for families to find emotional, psychological, physical, and spiritual healing. He hopes that looking at the full need of families and patients can be a gold standard for other hospitals. Amanda agrees, also noting that she looks forward to seeing where they can improve and pivoting in that direction. She shares:

“Working with pediatric oncology patients is not always easy. But working at St. Jude is a beautiful opportunity to meet people in horrific circumstances and help them find joy in their daily life. That’s something tangible we’ve seen since Family Commons started. One of my favorite aspects of St. Jude is the focus on collaboration. We want other hospitals to be great and we want children to have good outcomes. So I’m excited to see how we can share this information on Family Commons and how it can be scaled in a way that makes sense in other places to offer the highest benefit for patients across the country.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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