Synthia (Mom), Eric (Dad), Jayden (11), and Elias (3) began their stay at Ronald McDonald House New York on July 12th, 2023, and after 16 weeks, they were prepared to return home. Their journey has been marked by resilience, love, and many impactful programs supplied by the amazing Programs Teams at Ronald McDonald House New York (RMH-NY) that have left lasting memories that only a family who has stayed in the House would truly understand.
Embracing the Unexpected
Jayden at Morgan Stanley's Children's Hospital
The family’s life took an unexpected turn when their oldest son, Jayden, developed a mass in his liver about the size of an adult man’s fist and was diagnosed with fibrolamellar carcinoma, a rare type of liver cancer that almost never affects kids his age and is only found in one in every five million people. Faced with the challenging treatment plan and having already gone through over two dozen rounds of chemotherapy in Ft. Myers and a radiation solution with specialists called Y90 in Chicago, Jayden needed an even more highly specialized surgery to get the cancer out of his body.
The family could choose between Dallas and New York City for Jayden’s operation. Since both Synthia and Eric grew up in the area and with family and friends close, New York City was the easy choice. With the decision made, Jayden would have his surgery done by specialists at New York-Presbyterian Morgan Stanley Children's Hospital and after a conversation with their social worker at home, the family would stay at Ronald McDonald House New York.
Dad is Coming Too!
Eric applied for the Family and Medical Leave Act (FMLA). FMLA entitles workers to take unpaid leave for up to 12 weeks per year, without losing job security or health benefits. This type of benefit is for people who need to take time from work to care for a spouse, child, or parent with a serious health condition.
Eric negotiated four additional weeks away from work and that made 16. This secured the opportunity for the whole family to stay in New York together while Jayden was in surgery and recovering.
Now, it was time to fly.
Finding a Home Away from Home
Upon their arrival, the family was pleasantly surprised by the warm and welcoming atmosphere at RMH-NY.
Synthia recalls her first feelings about the House noting that she had not seen one picture of the inside before they arrived.
"I liked how it felt very homey. It wasn't so in your face."
The initial amazement came from the simple joys, like free ice cream in the lobby, which Elias, the youngest, found particularly exciting.
Connecting Through Programs
" It's in the name, Play. Room."
--Jayden, when asked why the RMH-NY playroom was his favorite room in the House
The family quickly immersed themselves in Ronald McDonald House New York’s programs. From Nadia's art classes and Slimetime to the playroom's magna-tiles, Jayden and Elias found joy in every corner.
Jayden recalled a day where he wasn’t feeling so well but went down to the playroom anyways. That day, the programs team brought out their Play-Doh Make Your Own Monster sets. Jayden, who loves all things scary, jumped at the opportunity to make his own monster. At that point, pain was a distant memory for the boy.
Elias, the three-year-old, loved playing with the plastic play kitchen in the back of the playroom near the windows. He especially loved cooking the lemons.
Jayden loved the playroom so much that he proudly left his mark in slime. This underscored the sense of belonging the family experienced after only a few weeks at the House. While the boys loved the playroom, the whole family could find something that made them smile across the hall in our 2nd floor dining room.
Developing Diverse Palates
Synthia and Eric didn’t find much use for the four chef’s kitchens that are available to families for meal preparation, but they found that the meals prepared by the volunteers and local Upper East Side eateries were very tasty for the most part. What they loved even more about the food choices from the meal program at Ronald McDonald House New York was the diversity of the cuisine.
The boys were introduced to so many different foods that they would normally never eat at home in Florida. For example, Elias will devour any amount of hummus that you put in front of him, and Jayden now lives for bar-b-que of any kind.
“I love meat.”
-Jayden on bar-b-que
Mom and Dad were so excited to see their boys branching out and trying foods from other parts of the world. That was a benefit to living in the House that was very unexpected for the family, as was the Wellness Center.
Wellness Center Bliss
The Blavatnik Family Foundation Wellness Center
Taking advantage of the Wellness Center, the family indulged in massages and sound baths, creating moments of relaxation amidst the challenges. The support extended beyond Jayden's medical needs, fostering an environment that nurtured the entire family's well-being.
Jayden exclaimed,
“This is better than a hotel.”
Building a Community at Ronald McDonald House New York
One of the highlights for the family was the sense of community developed between families in the House. Synthia emphasizes the importance of asking questions, using resources, and reaching out to other families during their stay.
"Don't be shy. This is what the house is for,"
Synthia was recognizing the extended family of friends they've found during their stay.
The family, who claim to be introverts, talked about the easiness of Ronald McDonald House New York when meeting new people.
“We made it our own experience. As a family, we were introverted in general. And it was nice being able to break out of our shell on our own terms and meet everyone individually. Let them meet us and get to know us and we do the same for them.”
--- Synthia on meeting other families at RMH-NY
However slowly it may have happened, it was clear that Halloween night. The family marched around the block in the therapy dog parade and laughed with friends. This was because RMH-NY had quickly become a safe place for the family; even a familiar place filled with great friends and cherished memories.
In only 16 weeks, Jayden’s family had found the support they needed in friendships with other families fighting similar battles. In addition, they found support through staff and volunteers who took care of every need. Jayden’s family found a community that they had truly come to love.
Gratitude for Donors
Expressing their gratitude to potential donors, Jayden's family highlights the immeasurable impact of contributions.
"Thank you so much because you have no idea how much you're helping families. I didn't realize how much of a huge help this would be. It just takes the burden off everything that you have. Your focus becomes your child and what they are going through and the last thing you should be thinking about is that ‘I need to go buy laundry detergent’ for instance. It goes to all of that from the big events like tonight to the smallest daily needs that they take care of. And so, we're forever grateful for all the donors that do that and make it happen.”
--Synthia on giving to RMH-NY.
Ronald McDonald House New York takes great pride in being a 360-degree wraparound support system for every member of each family staying in the House. The support provided, from meals to laundry, allows families to focus on their child's health, turning a challenging journey into a manageable one.
As Synthia said,
‘It just takes the burden off of everything.”
That is the central focus of the RMH-NY mission. The staff and leadership at the House strive to accomplish this every day.
Birthday Parties Rule
Jayden’s favorite moment of his time at the House was most likely October 11th or his birthday. Jayden was born on 10-11-12 and this year he turned 11 on the 11th which made it his golden birthday.
When he first realized that he would be in NYC for his birthday, Jayden was bummed to not be at home with his friends and family.
However, when the big day came, Jayden quickly realized there would be nothing to be buzzed about when your birthday is thrown by the Programs team at Ronald McDonald House New York. Programs coordinator Nadia and programs associate Tuesday, who had spent many afternoons with Jayden and Elias making slime and Playdough monsters, decided to pull out all the stops for Jayden’s big day.
Here is how Jayden described his birthday.
“We spent my whole birthday here and we were like, oh, we're going to spend it here, and that's sad. But… Nadia and Tuesday both made my birthday very special. They made it amazing. And they had an amazing cake. They got me an art kit because I like to draw stuff. They got me some T-shirts. Oh, that was cool.”
In all honesty, Nadia and Tuesday made Jayden the happiest of birthday boys who was no longer concerned that he didn’t get to spend his birthday at home in Florida. RMH-NY had given him a day he would remember forever.
Lego Parties Too
Tuesday and Nadia also created a Lego scavenger hunt that was a part of a full house Lego party extravaganza . They played a ton of Lego games to win cool Lego sets. Mom reminded Jayden that they had collected so many Legos, she had to pack it all up and ship it home separately since there was no place in their bedroom where they could keep it.
Paying it Forward
Elias stands mesmerized by the fish tank in the 1st floor living room.
Returning home means easing into or simply getting thrown back into that normal life where Dad commutes to work every day and Mom works as a full-time caretaker juggling an almost teenager and his medical needs and a rambunctious little one who is usually more than two handfuls’ worth of work.
For Synthia and Jayden, it means going back to their budding home business making t-shirts among other things that they sell for the family to make some extra money. More importantly, they take 50% of the business’ profit and donate those funds to local charities in Florida that serve kids battling pediatric illness.
Half of that 50% is reserved for a local charity connected to their Florida hospital called Barbara's Friends. The other is called FibroFighters, an association of doctors in Chicago specializing in fibrolamellar carcinoma research. Before leaving the subject, Mom quietly wanted me to know that It was Jayden’s idea to donate half of the proceeds to charity.
Jayden was proud to display the t-shirt he and his mom made. The images were all his favorite things. He wore it on Halloween night with great pride. The front of the shirt displayed the words “We All Fight Together”.
Follow the family on social media at:
Jayden’s Instagram - @thecancerninja.
T-shirt Business Instagram - @sje_creation
TikTok - @vidadesyn
Memorable Memories
After 16 weeks living in Ronald McDonald House New York, Mom and Dad said that the thing they were going to miss the most was having the whole family within the same four walls. They loved that their boys were right there with them all day long and sleeping all night long the same.
Jayden piped in at that moment to set the story straight.
“Honestly, I’m ready to have my walls back.”
Reflecting on the Journey
As Jayden and his family prepare to return home, they carry with them memories of a shared Halloween celebration on their final night at RMH-NY. This was coupled with a massive birthday celebration for Jayden earlier in the month. There was plenty worth celebrating in October this year.
They also carry the strength they found in each other and in the Ronald McDonald House New York community. Their journey shows the crucial role all our programs play in bringing our House to life and offering our families that compassionate, wraparound care we promise. From the enrichment programs for kids to the meal program to our Wellness Center on the 11th floor designed specifically with the caregiver’s wellbeing in mind, each play a specific part in making Ronald McDonald House New York a true home away from home for the families served.
"Even if it's hard, you can't skip it. Make the most of the bright moments before the light turns off to go home."
--Jayden’s at age 11.
Jayden returned home to Florida at the beginning of November staring down two more years of chemotherapy ahead of him. However, this resilient, wise young man was just so excited to travel home to see his family and friends and to have four walls all to himself again..
He did mention that he will miss running downstairs every afternoon to see what fun Nadia had cooked up for the kids in the Playroom that day..
Synthia, Eric, Jayden, and Elias’ story is a beacon of hope and testament to the advantages of true curiosity. It showcases the profound impact of Ronald McDonald House New York's programs on families facing the unexpected challenges of childhood illness.
