Thursday, August 17, 2017

Growing Strong

Three young Hudson Valley residents beat cancer with the help of family, friends and the advanced care provided at Maria Fareri Children’s Hospital.

By Melissa F. Pheterson

Julianna Vano

At just 9 years old, Julianna Vano of Yorktown Heights unleashed both her creativity and her fighting spirit within the corridors and courtyards of Maria Fareri Children’s Hospital while undergoing treatment for lymphoma.

In November 2014, Vano’s mother, Joann, noticed that Julianna — her little “Energizer bunny” who loved dancing, soccer and basketball — was feeling lethargic and complaining of abdominal pain. Initial bloodwork suggested hepatitis A. When she turned a sickly shade of yellow, Julianna’s family went to Maria Fareri Children’s Hospital. The medical team performed scans that revealed masses on Julianna’s organs and suggested diffuse large B-cell lymphoma, a form of non-Hodgkins’ lymphoma. Fortunately, a cutting-edge chemoimmunotherapy clinical-research trial, developed by Mitchell Cairo, MD, Chief of Pediatric Hematology, Oncology and Stem Cell Transplantation at Maria Fareri Children’s Hospital, was available to Julianna at the Children’s Hospital. Julianna spent the holidays there, beginning with her first chemoimmunotherapy cycle.

Thanks to the hospital’s Child Life & Creative Arts Therapy Department, Julianna enjoyed painting, music, guitar, games, kite-flying and other activities with Certified Child Life Specialist Lauren Nittoli, MS, who helps children recover through creative engagement.

Julianna’s 20-day chemoimmunotherapy cycle meant that she checked in every 20 days for about a week, then left the hospital for two weeks. Inside the hospital, she would play with LEGOs, have Nerf gunfights in the garden and meet up with younger friends, wearing a cape that read: “I fight cancer; what’s your superpower?” Outside the hospital, she continued dancing, even performing at the halftime show for the Westchester Knicks — with double-sided tape to secure her hairband to her bald head.

Two summers ago, Julianna completed her last round of chemoimmunotherapy. “Not even a trace of cancer,” says her mother. She has resumed dance, soccer and basketball, and has taken up lacrosse. This past summer, she was honored as “Girl of the Year” at a Leukemia and Lymphoma Society gala in Connecticut. “She started off the night in heels,” says her mother, “and ended it wearing Converse sneakers.”

Ryan Gilchrist

With a packed calendar of hockey, lacrosse and basketball, there was no time
for stomach aches to sideline Ryan Gilchrist of Yonkers. But in January 2013, the pain grew so severe that the eighth grader had to interrupt his midterms to
visit the hospital. Hopefully, I’ll bounce back soon, Ryan recalls thinking; his hockey team was scheduled to play in the state championship. “I’d been looking forward to that for so long,” he recalls.

Ryan was “shocked and scared” to hear the diagnosis of B-cell lymphoma. “I didn’t know what to expect.” His parents reached out to friends, family and coworkers, nearly all of whom urged a consultation with Mitchell Cairo, MD, Chief of Pediatric Hematology, Oncology and Stem Cell Transplantation at Maria Fareri Children’s Hospital.

“Dr. Cairo has made this his life’s work,” says Ryan’s father, Tom Gilchrist. “My wife knew right away we were in the right spot.”

Ryan began treatment on the state-of-the-art chemoimmuno- therapy trial. Dr. Cairo was confident that Ryan would emerge cancer-free in 90 days, enabling him to return to life as a teen athlete by mid-April.

Meanwhile, Ryan’s family, friends, classmates, teammates and hockey coach united into an enthusiastic “Team Gilly.”

In the hospital, doctors and nurses also broke down strategy — in this case, to skate circles around the cancer. “The social workers were always there to talk to me,” says Ryan. “Before an operation, I had a port put into my chest, and they explained everything, giving me the rundown before I even asked.”

True to Dr. Cairo’s word, Ryan was cancer-free by April 15. Now a senior, Ryan plays lacrosse competitively and is applying to colleges, but he always makes time to speak with other cancer patients, caregivers and donors as a survivor.

“It was humbling, and taught me to live life to the fullest,” he says.

Hanif Mouehla

As a boy living with sickle cell anemia, a genetic disease that causes red blood cells to break down, Hanif Mouehla of Pomona was always bracing for the worst: discomfort that would ratchet into episodes of intense pain.

In 2013, just after turning 8, Hanif complained of a backache; within a day, both of his lungs had collapsed. On a ventilator, fighting for his life, Hanif arrived at the Pediatric Intensive Care Unit of Maria Fareri Children’s Hospital. There, doctors induced a coma to speed recovery, then approached Hanif’s parents to discuss a clinical trial for which the hospital is a leading facility: a stem-cell transplant study that recruits family members as bone marrow donors to replace sickle hemoglobin red blood cells with healthy ones.

“For any person who has nearly lost a loved one,” Hanif’s mother, Khuraira Mouehla, says, “Finding out there is a potential solution is a gift from God. I knew whatever the doctors asked of us was something they truly believed in.”

Hanif’s twin brothers, then 11, weren’t compatible donors. Thankfully, though Khuraira was a half-match to her son, he was eligible to undergo treatment in a national trial conducted by Dr. Cairo, using selected stem cells from his mother while receiving a Haploidentical stem-cell transplant.

“They explained it might be uncomfortable,” Khuraira says, “but I always said: ‘Is it as bad as labor?’” She channeled that maternal strength into giving life, a second time, to Hanif. “Honestly, to me, the procedure was a walk in the park compared with what it could do for my son.”

On September 15, 2014, Khuraira watched in amazement as the technician drew blood and dashed out of the room to prepare the stem cells for Hanif – an influx that created a repair network for the boy to replenish healthy cells without limit.

While he will always have the sickle cell trait, the crisis that plagued him has disappeared, and he can live a complete, normal life. Now, Hanif is a healthy 12-year-old with strong basketball skills and straight As, living in Bergen County, NJ, with his family. He wants to become a doctor, just like the “real heroes with big hearts” who saved his life, he says.

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