Beyond the Diagnosis: A 9-year-old Tale of Resilience at Ronald McDonald House New York

 Hope Triumphs

Within the Ronald McDonald House New York (RMH-NY) walls, families that face intense and daunting challenges surrounding pediatric cancer and other life-threatening illnesses find hope and a sense of community unlike any other. Heather (Mom) and Zea's (9 years-old) lives were forever changed by Zea’s diagnosis. The family came to NYC seeking alternative treatment to chemotherapy at Memorial Sloan Kettering Cancer Center while they found refuge and support and unlocked their family’s incredible resilience staying at Ronald McDonald House New York.

The Diagnosis, The Treatment, and an Important 2^nd Opinion

The journey began when Zea was only three months old. The family received the cancer diagnosis that rocked their world to its core. Zea was Heather’s sweet little infant girl, and it was unimaginable to believe that only three months into this precious little life, she would be struck with this unthinkable diagnosis.

The doctors found an aggressive form of Neuroblastoma cancer already squarely in stage four and little Zea was admitted into immediate surgery on her spine to take out the primary tumor in her body. After surgery, Zea was left paralyzed from the chest down and her doctors feared she would never find the ability to walk.

Two days later, Zea started chemotherapy.

After eight rounds of chemotherapy, a one-year-old Zea barely holding on to life after each round, her doctors ordered four more. Opting to not put her little girl through the pain and the possible side effects of ongoing chemotherapy, Heather and Zea, with big sister, Kaia, traveled to NYC and meet with doctors at NYC’s Memorial Sloan Kettering Cancer Center (MSK Kids) to gather a second opinion.

"When we first learned that Zea needed treatment in NYC, it was overwhelming," recalls Heather. "But coming to Ronald McDonald House New York was like coming home to a whole new family." The supportive community at RMH-NY provided them with the strength and solidarity they needed to navigate the uncertain road ahead.

Doctors at MSK Kids put Zea on a ‘watch and wait’ plan. No more chemotherapy was needed. Doctors told Heather that sometimes neuroblastoma cells can resolve on their own and go away. After chemotherapy, that is exactly what they did.

FUN FACT ABOUT NEUROBLASTOMA

Neuroblastomas show a remarkable capacity to undergo spontaneous regression. The prevalence of this phenomenon is hard to determine precisely but the experience from mass screening programs suggests that there are at least as many children who have tumors undergoing spontaneous regression without clinical detection as there are patients with neuroblastoma detected clinically.

Brodeur, Garrett M. “Spontaneous Regression of Neuroblastoma.” Cell and Tissue Research, U.S. National Library of Medicine, May 2018, www.ncbi.nlm.nih.gov/pmc/articles/PMC5920563/.

A Community Lifeline in Times of Turmoil

Heather and husband Nicholas, now adding Oriana (2 years-old) and Devin (1 year-old) and totaling a family of six, have been staying in the House when they come for Zea’s treatment at Memorial Sloan Kettering about five times each year for the last eight years.

For her entire life, Zea has carried the weight of this sickness on her shoulders, but the House and the people that Zea and Heather befriended, some of whom they met eight years ago during their first stay and many that still work for RMH-NY today, always help to lighten that load a bit.

a Young Zea held by The Rockettes

"Being surrounded by people who understand what you're going through makes all the difference," affirms Heather.

A Sister’s Love and RMH-NY’s Sibling Support System

Kaia, Heather’s oldest daughter, now 17 years old and thriving at an arts school at home in Miami, (Kaia has been locally and nationally recognized for her work at a very early age.) was only eight years old when she became a big sister for the first time. Kaia and Zea possessed a very special bond from the beginning, so you can imagine the sadness Kaia felt when Zea’s diagnosis came three months into her life.

“Siblings are very affected as well and it is so important they are seen, supported, and heard.” Heather pointed out the change Kaia experienced through it all.

Kaia and Heather both agreed that it would be easiest for Kaia to be home schooled allowing her to travel with the family every time that they had to come to NYC for Zea’s treatment. Mom would teach her when they were home in Miami and Ronald McDonald House New York provided tutors to assist with Kaia’s school tasks every time the family was in NYC.

“Kaia loved the RMH-NY, and she still does. At that time there was a music room and a game room and that is where you would find her most days.” Heather said about her oldest daughter’s relationship with Ronald McDonald House New York. “She was always encouraged and supported by the RMH-NY staff, and it made a big difference in her life.”

Zea and Kaia remain very close to this day. Kaia was even in NYC recently during the family’s visit to the House visiting prospective art schools to attend after graduation. Kaia’s art school of choice is in NYC. There is no doubt she will get a great education there, but perhaps the school was also chosen to keep her close to Zea and Heather and family when they visit for treatment.

Creating Bonds That Transcend Adversity

At RMH-NY, connections are forged that transcend the boundaries of illness and adversity. Heather and Zea found comfort and camaraderie in the company of other families facing similar challenges.

"Meeting other families going through similar experiences was so helpful," shares Heather. "We’ve made friends from all over the world and kept in touch with all of them… which is amazing.”

These connections serve as a source of strength and support, reminding families that they are never alone in their journey.

Meeting a Family’s Diverse Needs with Compassion

Beyond providing a warm and welcoming place to stay, RMH-NY offers a comprehensive range of supportive services to meet the diverse needs of families seeking treatment for their child’s illness. From counseling and support groups to educational workshops and recreational activities, Heather and Zea found comfort and empowerment in the holistic care provided by the dedicated staff and volunteers.

"Having access to resources like caregiver coffee break made a world of difference for me and our family," said Heather.

 Baby Zea with her Great Grandmother. At one point in Zea's treatment, four generations of women in her family were all in the House together. Zea, Heather (mom), and Zea's Grandmother, and Heather's Grandmother! #keepingfamilyclose

Years and Years of Service Accumulated

Speaking of dedicated staff, the team inherited and assembled under the leadership of Dr. Ruth Browne, CEO and President of Ronald McDonald House New York, is a solid, mission-focused group of compassionate individuals, many who have served the families at the 405 East 73^rd Street House since before the House’s address was 405 East 73^rd Street.

The dedication that RMH-NY’s leadership team and staff have to the mission of the organization, and more importantly, every single family who walks through the front door, is unwavering. Here is a short list of the longest-serving members of the RMH-NY team:

Wini Cudjoe, Chief Operations & Management Officer and Longest Serving Team Member at Ronald McDonald House New York

 Longest Serving Team Members at Ronald McDonald House New York

A Sound Bath Meditation

An activity that Heather and Zea return to take part in on a weekly basis when they are in the House is the Sound bath class taught up in The Blavatnik Family Foundation Wellness Center for caregivers on the 11^th floor. The relaxation and calm experienced during that hour-long escape was enough to keep this mom and daughter duo coming back many weeks in a row to catch the meditation fix they needed.

Zea takes us through the specifics of her Thursday Sound Bath retreat in the Wellness Center:

“There's this girl. She has different instruments. She has a little drum with beads in it, and it sounds like the ocean. And she goes around the circle of people, and she plays the instruments over people. And then she has this little box and singing bowls. And she also has these little metal things that she puts them together to make other soothing sounds. We (the class attendees) just lay down on yoga mats in a circle around her. So here's the yoga mat, we lay down and then there's a blanket. And then there's a pillow.”

Heather and Zea both jokingly alluded to the fact that by the end of each session they are usually sound asleep and need to be awakened. The Wellness Center welcomes sleeping caregivers during class as it proves that the meditation technique is only allowing people to find exactly what they need in the moment - even if it is a nap.

Bringing Families Even Closer Together

When the family goes home to Miami after each stint in the House, life resumes its crazy pace and Heather and Zea both say they miss many different things about RMH-NY when they are not here Heather recalls what she misses most about the House when they return home: “You know, Zea and I do a lot of crafting together. When we're here we go to the playroom and we get a lot of, you know, creative projects that we do together. Today, we made snowflakes for our door. So that's what I miss.”

Once the duo returns home, there will be school and daily routines and three other children to look after which leaves little time for bonding moments over craft projects. Heather makes certain to carve out that one-on-one time with Zea when she can at home but misses the ability to create that special focused time with Zea in the playroom at Ronald McDonald House New York on a weekly basis.

Milestones and Miracles: Celebrating Every Victory

Zea with the New York Giants

In the face of adversity, every milestone achieved becomes a cause for celebration at RMH-NY. Whether it's a successful surgery, a clear scan, or a moment of joy in the middle of months of uncertainty, each victory is met with unwavering support and generous applause.

"Every step forward, no matter how small, is a reason to celebrate. We would not have been able to do any of this without Ronald McDonald House New York. It just wouldn’t have happened.” affirms Heather. These moments of triumph serve as a reminder that even in the darkest of times, there is always light to be found.

Zea’s fighting spirit has afforded her many triumphs over the years. Through her work at the Kennedy Kreiger Institute at John’s Hopkins in Baltimore, Zea went from a diagnosis that left the damage to her spinal cord ‘irreversible’ to wiggling her toes, to assisted walking, to walking on her own with the help of a walker. Zea has a determination for the ages. It shows in her body’s willingness to overcome and move beyond each hurdle that might be thrown her way.

Zea’s Growing Mobility and Needed Accessibility at RMH-NY

Zéa’s limited mobility is caused by the two primary tumors which compressed her spine at diagnosis. The pressure from the tumors caused a spinal cord injury and she was completely paralyzed after her initial surgery at three months old. She has worked diligently her entire life to gain normal function.

After a surgery last November left her in incredible amounts of pain and wearing two full leg casts, Zea had to essentially learn to walk all over again.

Heather recalls the months of rehabilitation that took place in the hallways at Ronald McDonald House New York after her surgery late in 2023.

Heather and Zea before the NYCB's Nutcracker 

“She had a routine at RMH-NY every morning as she slowly walked the halls with the help of a walker until she was strong enough to go to the elevator and then down to the living room to see the fish. Day by day she slowly built endurance and strength. The RMH-NY staff gave us a safe place for her rehabilitation and the necessary accessible areas for her recovery. She is now working on building strength through physical therapy and her goal is to ambulate independently one day.” 

Zea will walk on her own one day, but until then accessibility is crucial for the family and rarely something that you can find in New York City. Ronald McDonald House New York offered Zea a fully accessible ‘home’ to come to when in NYC. This relieved Heather of the duty and worry of finding a new place to stay with all the same accessibility for Zea every single time they came to NYC. Heather could breathe with the confidence that RMH-NY would have a place for them to stay that was a positive place where Zea could easily regain her strength and mobility over the years.

Featured Family: Zea and Heather Shine in the Spotlight at Miracle on 73rd Street

Zea's little brother, Devin (1), and sister, Oriana (2) sizing up Santa from the stroller at RMH-NY's Miracle on 73rd street

In a heartwarming display of holiday spirit, Heather and Zea graciously stepped into the spotlight as the focal family during Ronald McDonald House New York's Miracle on 73rd Street celebration last year. Despite spending eight years at the House, the holiday season had never previously found them in residence. However, in 2023, Santa himself extended a special invitation, ensuring that Zea and her family experienced the enchantment of the festive season within the comforting embrace of the House.

The evening unfolded into a delightful affair, filled with Santa's jovial presence and merry celebrations. Zea and Heather found themselves surrounded by eager reporters, each keen to capture their inspiring tale. After enduring eight arduous years dominated by neuroblastoma cancer, Zea emerged victorious, finally entering remission, and reclaiming her life from the clutches of the disease. With jubilant hearts, they shared their journey with major news outlets such as ABC, NBC, and NY1, offering a glimpse into the resilience and hope that permeates the halls of RMH-NY during the holiday season.

Here is a snippet of Zea and Heather's uplifting interview during Miracle on 73rd Street in these excerpts from NBC and NY1:

Advice to New Families from a Veteran Mother

Heather and Zea have been a part of the Ronald McDonald House New York family for almost a decade now and both have learned many things in their time at the House. Here were Heather’s words of advice to new families that are coming to stay at RMH-NY for the very first time:

“Meet with other parents. There’re programs like the caregiver coffee break, that's every week. There's also a book area (usually in the 2^nd floor dining room) where you can grab a book that's donated and bring it to your appointments. That's nice. I've done that many times. Sometimes when the days are too long, you have to take it one moment at a time. And I think, for me, that's been the lesson through this whole journey: to just stay in the moment and appreciate the little things because they really do make a big difference.”

At Ronald McDonald House New York, our mission is clear. We strive to take care of the small things that can quickly add up to a big difference in the lives of our families. Our priority is making sure that families can stay together through their child’s treatment and that every kid gets to be a kid first; and a cancer patient a very distant second. Our leadership team, our Board of Directors, our volunteers and staff members all agree that each child’s journey is unique and must be personalized and shaped to give them the environment to create the healthiest outcome possible.

Embracing Hope and Finding Strength

As Heather and Zea reflect on their journey at Ronald McDonald House New York, they are filled with gratitude for the unwavering support and compassion that carried them through their darkest days. Their story serves as a show of hope for families facing similar challenges, a reminder that even in the face of adversity, there is strength to be found in the everyday small things.

Ronald McDonald House New York stands as a testament to the power of compassion and the transformative impact of support, providing a home away from home where families of all kinds, just like Heather and Zea, can find hope and resilience during their greatest trials.

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The family has also started a nonprofit, Whimsy World, an art therapy program for children with cancer in hospitals.

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