Because Moments Make Memories

The Malena Family and Ronald McDonald House New York 

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Malena family's path through Ronald McDonald House New York (RMH-NY) showcases the family’s immense strength, eternal, unwavering optimism, and the life-transforming impact the RMH-NY community’s support can create for every family it touches.

Hailing originally from the Dominican Republic, the Malena family—comprising parents Claudia and Daniel, and their children, Daniel Alfredo and Valentina—first arrived at RMH-NY in 2018. Daniel, the older of the children, fell into urgent need of progressive medical treatment a child might only find in an international healthcare hub like New York City.

Daniel had Bilateral Wilms Tumor and no treatment at home in the Dominican Republic could save him. The Malena Family arrived at Ronald McDonald House New York with one last hope left.

 

Would New York City hold the secret formula, the magic that could help his doctors wage war on this disease and finally vanquish the enemy living inside Daniel once and for all? When they arrived at Ronald McDonald House New York in 2018, that was the Malena family’s one fervent prayer.

 

The Road to the Ronald

Claudia and Daniel Malena come from Santo Domingo, the ultra-bustling capital city of the Dominican Republic. Life in Santo Domingo was a routine blend of work, school, and after-school activities for their children. Daniel loved playing basketball, while Valentina was passionate about her gym classes. Their days were marked by a rhythm of early morning starts, busy school and work schedules, and limited family time in the evening before a good night’s sleep to properly prepare to wake up, rinse and repeat.

However, life took an unexpected turn when their oldest child, Daniel was diagnosed with Bilateral Wilms Tumor infecting both of his kidneys. It was basically untreatable in their country. The need for specialized medical care brought them to New York City, and it was at the same time that they found a temporary home away from home at Ronald McDonald House New York (RMH-NY).

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Understanding Bilateral Wilms Tumor

Wilms tumor (WT) is the most common pediatric kidney cancer, affecting approximately one in 10,000 children. It is associated with undifferentiated embryonic lesions known as nephrogenic rests (NRs), or nephroblastomatosis when diffuse. Bilateral disease, where WT or NRs occur in both kidneys, is present in 5-8% of cases and poses significant clinical challenges.

Managing bilateral WT involves balancing the goals of maximizing survival, preserving renal function, and understanding genetic risks. Recent advances in molecular genetics have identified key genetic mutations involved in WT, aiding in the development of targeted therapies. Innovations in radiological imaging and surgical techniques, such as nephron-sparing procedures, have improved diagnosis, treatment, and preservation of kidney function.

Analyzing clinical data from numerous cases highlights the importance of personalized treatment plans. Epidemiological studies provide insights into risk factors and disease patterns, contributing to better understanding and management of bilateral WT. Ongoing research and collaboration are essential to improve outcomes for affected children.

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Upon arrival, the Malena Family, usually only Claudia and the children, stayed in the House full time. Daniel Sr. travelled back and forth with frequency to visit his family and check up on Daniel’s progression, but did need to keep the family financially afloat continuing to work at home in Dominican Republic between his trips to the House.

 

The End… A Little Early

This initial stay was a critical time for young Daniel’s treatment and eventual recovery.

Oh no... That was not the time to give that bit of information away. But it certainly isn’t a secret around here. So, might as well come clean now…

This specific family tale entrenched in a world of unknowns and hard times, ends on a rather triumphant note for Daniel and his family. That wonderful information could have been shared a bit later in the story, but now that it’s out there, it’s out there.  

That said, let’s all take a deep sigh of relief and get back to the story.

 

A Malena Day at RMH-NY

Claudia recalls the family’s daily routine at the House: waking up early for hospital appointments, returning to RMH-NY for lunch, and then engaging in various activities within the House. Daniel would spend any free time he had in the playroom with his sister, Valentina.   

Playroom Perfection

Daniel Jr. was never happier than when he was with his friends in the playroom either playing video games, watching movies, or enjoying Storytime or Slimetime with Nadia.

Daniel Jr. and Valentina took full advantage of the robust and incredibly entertaining and educational programming provided by the hyper-creative House Programs team every day of every week of every year at the House on East 73rd street.

Daniel Jr. recalls the many nights in the RMH-NY playroom:

"We all went to the playroom, my friends that I knew from different countries. Yes, they were from everywhere, from the States, from Russia, from Poland, from Europe, from Mexico, from Honduras. I miss the playroom and my friends the most when I go home."

 

Malena Memory Moment #1: The Hedgehog Hat

When Daniel initially started chemotherapy treatments, he lost his hair like most every child and adult does. But Nadia took notice that Daniel, more than most, just did not like the new state of things on top of his head. So, she and the programs team found Daniel this Sonic, the Hedgehog hat/mask that Daniel loved and could wear at any time. And, oh boy, did he wear that hat. It basically never left his head in eight months’ time.

Daniel fondly remembers the yellow hat:

"They (the programs team members) gave it to me, you know, when I had leukemia and was going through treatment. I wore it everywhere. I never took it off. And so, when I was leaving to return home, and my hair had grown, I took it off. I signed it, and I left it to Nadia and the programs team. Especially for Nadia though, as a memory of me."

 

Wellness Wishes

Malena family mom, Claudia also found moments of respite through organized support groups with other parents and caregivers organized by RMH-NY’s Family Support team that were disguised as extended weekly coffee breaks. Claudia also participated in weekly Zumba dance classes in The Blavatnik Family Foundation Wellness Center, and a slate of varied classes and services. Everything was held on the 11th floor of the House and geared toward the caregivers living in the House, strengthening their overall health and wellness.

Claudia recalls how necessary retreats to the Wellness Center became:

"For caregivers, the programs they do in the Wellness Center area, for example, Reiki, meditation, that helps a lot. In the case of us women, it is true that they pamper us a little bit, and we can do manicures, we have a space where we can relax, attend to ourselves. That is extremely important. I even participated in a karate class, personal defense, and it was super fun, because it helps you to get rid of stress, to channel all that energy, and be able to use it to relax, to de-stress, and to be able to continue doing that day after day."

 

Malena Memory Moment #2: ZumbaTime

Claudia also recalled another moment that left the family ‘in stiches’ even before she began to tell it.

Frequently, Claudia would even call her husband, Daniel, who would end up stuck in the Dominican Republic working to support the family at many times during their first eight months in the House, and he would join the Zumba dance class remotely from the phone. It must be the memory of Dad’s amazing Tele-Zumba dance abilities.

 

Ronald McDonald House New York Eases the Burden

The support provided by RMH-NY was immediate and comprehensive. Daniel Sr. emphasizes the immense relief of having access to reliable housing, nutritious food, and safe transportation, which alleviated many of the logistical burdens associated with his son's treatment. This allowed the family to focus entirely on Daniel’s health without the additional stress of managing everyday necessities in a foreign city:

"It is an immense support to be able to count on the help of Ronald McDonald House New York, especially because we, as parents, we no longer have that responsibility of looking for a place to stay in NYC, the correct food that Daniel should have during his treatment, the same issue of transportation and the risk, especially public transportation, of being infected with any other disease. And the truth is that counting on the help of Ronald McDonald House New York gives us an incredible peace and tranquility as parents, because we can concentrate on what is important, which is Daniel healing. And with that part already covered by Ronald McDonald House New York’s services, our burden to carry is so much lighter."       

                              ---- Daniel Malena Sr.

 

Building a New Community

One of the most profound impacts of staying at RMH-NY was the sense of community and security it provided. Claudia and Daniel both speak passionately about the friendships they formed with other families going through similar experiences. These relationships offered emotional support and solidarity, turning RMH-NY into more than just a place to stay; it became a home away from home.

Daniel Sr.:

"My first observation was that we had just come to another house. And all the families that are here, we are one family, all of us. Ronald McDonald House New York is not just four walls and a roof. The truth is that one creates a family in here, the neighbors become a family, you share with them day to day, and the truth is that during your time here, which is the worst because your son has leukemia, I saw the same or even worse cases in other families here. So, that made you aware that you really have to support each other, as friends, as a family, so that between each other, we can endure all the burdens and pressures we face."

 

The sense of community extended beyond the families to the volunteers and staff. Claudia highlights the importance of the emotional support provided by the RMH-NY team. Simple gestures, like checking in with the families and offering a listening ear, made a significant difference. This compassionate environment ensured that the Malena family never felt alone in their journey.

Claudia:

"Being inside Ronald McDonald House New York also gives us that security and tranquility that we are in a safe place, that we are in a place where we can count on people who have similar situations and that we can support each other. We can count on having volunteers, and a staff that helps us and guide us.  And when they see us a little bit, perhaps, low, or sad, they approach you and ask us how we are. That small conversation also helps us not feel so alone."

Every member of the Malena family quickly understood that there was an incredible community of people who were exactly like them, all living within a few feet of each other and all that you had to do to access this priceless gift was to engage in all the communal activities that the House already offered on the other side of the door to the family’s 7th floor bedroom. If there was an event or activity happening in the House, for those eight months it was a guarantee that the Malena family would be in attendance.

Malena Memory Moment #3: Bingo

The family fondly remembers a particular instance when Daniel won a game of Bingo at RMH-NY always brought to the House by our friends and amazing partners at Bloomberg. His joy and excitement were palpable, highlighting the importance of these small yet significant moments of happiness in the middle of their daily challenges.

 

Memorable Malena Experiences and Lasting Impact

Memories #4 and #5

One of the most memorable experiences for the Malena family at Ronald McDonald House New York was attending a gala where Daniel had the opportunity to meet the author of one of his favorite book series, the Teen Titans. Despite his initial nervousness to say hello, the night ended up being a total blast showcasing the unique opportunities and authentic moments of joy that RMH-NY provides to its children as well as all of its residents

Another standout memory was the visit from the New York Knicks basketball team. As a basketball enthusiast, Daniel was thrilled to meet the players and have his book signed by them. These experiences not only brought happiness but also created lasting memories that bolstered the family’s spirits.

With memorable moment after memorable moment, RMH-NY allowed Daniel more time to be a kid first and a cancer patient second.

 

Advice for New Families and Appreciation for Donors

Claudia and her children have valuable advice for families coming to RMH-NY for the first time. They encourage new residents to open and connect with other families, to foster a support network that can provide immediate comfort and guidance. They emphasize the importance of taking advantage of the various programs and resources available at RMH-NY, and most importantly, putting their trust in the supportive environment that the House offers.

Daniel Sr. passionately addresses the donors of RMH-NY, expressing deep gratitude for their contributions. He emphasizes that the donations have a direct and significant impact on families like his, providing the essential support needed to navigate their difficult journeys. The programs and facilities funded by these donations make a tangible difference in the lives of the families, offering them not just a place to stay, but a holistic support system and a true home away from home.

 

The Heartfelt Gratitude and the Journey Ahead

As the Malena family reflects on their time at RMH-NY, their gratitude is profound. The House has been a sanctuary during their most challenging times, offering not only practical support but also emotional and communal strength. The relationships they have built, the programs they have participated in, and the unwavering support from the RMH-NY team have all contributed to the success of Daniel’s treatment.

For Daniel, RMH-NY has been a place of healing and joy. His memories of playing in the playroom, participating in activities, and making friends from around the world are treasures that will stay with him forever. For Claudia and Daniel Sr., the House has been a lifeline, providing stability and peace of mind as they navigated their son’s medical journey.

 

Celebrating RMH-NY's 45th Anniversary

As RMH-NY celebrates its 45th anniversary, the Malena family joins in the festivities with heartfelt wishes. They recognize that RMH-NY is more than a house; it is a home filled with compassion, support, and love. The House’s commitment to creating a nurturing environment for families facing medical crises is unparalleled, and the Malena family’s story is a testament to its profound impact.

The Malena family’s journey at RMH-NY underscores the importance of community, support, and compassion in times of crisis. The House has not only provided a haven for Daniel’s treatment but also fostered a sense of belonging and hope that has been crucial for the family’s well-being. As they look to the future, the Malena family remains deeply grateful for the support of RMH-NY and its donors, knowing that this incredible community will continue to be a source of strength for many families to come.

 

YOU Can Help Make Memories

If you would like to ensure that more families like the Malena’s have the chance to create life-affirming connections at RMH-NY and a community that thrives and uplifts in the wake of so much pain, consider donating to Ronald McDonald House New York today.

Every dollar you give to RMH-NY creates another memory-making moment to lift-up and ease the burden for brave families who courageously fight for their children’s lives every day.

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