Debbie Egan-Chin/New York Daily NewsMichael Uyaguari, 7, has a crush on his doctor’s secretary Wendy Rodriguez (r.).
Michael Uyaguari flashes a grin that’s shy a few front teeth, as he chants: “MRI. MRI. MRI.”
He isn’t quite sure what he’s saying. But at 7, he’s no stranger to those letters.
Michael has an inoperable brain tumor.
It’s not cancerous, and about 95% of kids with this sort of tumor survive. There are tough side effects though. He’s legally blind, his right arm atrophied and the tumor set off early puberty, which is controlled with hormones.
At the moment, the friendly first grader is holding court, while hooked up to a chemo drip.
STATEN ISLAND NEIGHBORHOOD RALLIES AROUND ISABELLA ACIERNO AS SHE BATTLES BRAIN TUMOR AGAIN
“Donde esta Wendy?” he asks. “We need Wendy.”
Debbie Egan-Chin/New York Daily News“The most important thing the doctor told me is he will live,” Rosa (c.) says. “And we can control it. It’s hard for us. But he loves to come here.”
Wendy Rodriguez is his doctor’s secretary, whom Michael adores. It’s mutual.
His parents, Rosa, 34, and Fernando, 36, and sister, Amy, 2, take the train from Port Chester for his weekly chemo session.
Once at NYU Langone’s Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders on East 32nd Street, he settles in. The chemo “feels cold but nothing hurts” Michael says.
“The day after my doctor appointment day, my stomach starts hurting. I have nurses at school and I can tell them,” he says. Michael attends Mt. Pleasant Blythedale School, for patients at Blythedale Children’s Hospital.
As a newborn, he was not thriving. His mother, who already had a son, Fernando, a year older, knew there was a problem.
“He did not seem right because he was throwing up a lot,” she says. “I explained to pediatricians and no one seemed to believe me.”Pediatricians sent them to a gastroenterologist who recommended a neurologist.
“He was very, very skinny,” Rosa says. “One doctor thought he had a stroke because of his hand. He was sent for an MRI and they found the tumor on his brain. My husband and I were crying and thinking the worst.”
Brain tumors are rare in babies. So it’s not surprising many pediatricians don’t instantly recognize them, says pediatric oncologist Matthias Karajannis, who has taken care of Michael since he was 9-months-old.
Debbie Egan-Chin/New York Daily NewsPediatric oncologist Matthias Karajannis has taken care of Michael since he was 9-months-old.
Some 4,600 children up to age 19 are diagnosed with brain tumors each year in the United States, Karajannis says. Of those tumors, about half are cancerous. And around 250 children each year are diagnosed with optic pathway glioma, like Michael.
“The expectation is at some point the tumor will stop growing,” Karajannis says. “The chemo will shrink the tumor or slow it down. Chemo is not a durable response.”
This means while he’s on chemo, all seems fine — for a while. Then, Michael goes off it, the tumor grows and the cycle resumes.
Karajannis, though, is hopeful.
“Every year that he grows older, the chances increase that the tumor will stop growing even without chemotherapy,” he says.
Michael’s neurological problems won’t go away. His sight can’t be repaired. His arm is twisted at a useless angle and he walks with a gait. The doctor’s goal is to “prevent any other problems.”
Debbie Egan-Chin/New York Daily News“I have other friends,” Wendy Rodriguez (r.) says of the young patients. “But this is my special friend. He has been here for so many years.”
Over the years, Michael had surgeries to analyze the tumor, remove a portion of it growing on the part of his brain that weakened his right side, and to install ports — devices under the skin to deliver medicine.
Though legally blind, he can see large objects, colors and light and loves creating art.
Today, Michael is excited because he’s making a special Valentine’s Day card for Wendy. He grips a paint marker and coats half of a plastic plate with green paint to make a dinosaur.
As he works, Rodriguez arrives, carrying bags of goodies: different colors and shapes of Post-its, gummies, a cake pop she baked and a bag with chocolates and princess stickers for Amy.
“I have other friends,” Rodriguez says of the young patients. “But this is my special friend. He has been here for so many years.”
As she talks, Michael calls out, “I know who’s that voice! I know! It’s Wendy!”
Rodriguez eases herself onto one of the tiny chairs in the room, where children are hooked up to machines. She gives Michael gifts. He presents the card. They hug.
Within an hour, his parents will bundle Michael back into the hat and gloves and jacket he’s not wild about and the family will make the return trek by train. The parents take turns, cuddling Amy and doting on Michael.
Fernando works in construction and Rosa takes care of the children.
“The most important thing the doctor told me is he will live,” Rosa says. “And we can control it. It’s hard for us. But he loves to come here.”
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