Patients in the Spotlight: Avrie Sinesiou
Girl battling cancer finds comfort in an unusual friend
Since the beginning of the school year a stuffed monkey named Mavrie has sat in Avrie Sinesiou’s chair in her first grade classroom at Seneca Elementary. “Monkey in My Chair” is a national campaign to help cancer patients, like Avrie, stay connected to their classmates. Avrie hasn’t been able to meet her peers or teacher because she had a bone marrow transplant after a relapse with leukemia and her immune system isn’t strong enough yet.
When Avrie was 4 years old, her parents Kate and Adam Sinesiou noticed she developed a rash that looked like a series of small broken blood vessels all over her body. Her pediatrician Kristen Savage, M.D., at Irondequoit Pediatrics sent the family to UR Medicine’s Golisano Children’s Hospital, where doctors identified the rash as petechiae, red or purple spots on the skin caused by a minor hemorrhage.
The real concern was that Avrie’s white blood cell count was 123,000, almost nine times the normal amount. Avrie was diagnosed with high-risk acute lymphoblastic leukemia (ALL) and was admitted to 4-3600 to begin her first round of chemotherapy right away.
“The phases of chemo she went through and treatment is all a blur,” Kate said. “We were in and out so many times I lost track.”
Avrie had the standard chemotherapy for a patient with her diagnosis, which required regular intensive treatments and a month stay in the hospital. On day 29 of her stay, Avrie’s hematology/oncology team looked at her bone marrow biopsy and deemed her in remission.
“Avrie was what we call a rapid early responder,” said Avrie’s primary oncologist Lauren Bruckner, M.D., Ph.D. “Her disease responded very well to therapy and Avrie tolerated the chemotherapy and bone marrow transplant well.”
Avrie continued routine maintenance therapy at home and at Golisano Children’s Hospital’s B&L Wholesale Pediatric Outpatient Treatment Center for the next two years. This included having a nurse come to her home for blood tests, taking chemotherapy pills, and having treatments done at the outpatient clinic once a week.
During her treatment, Avrie missed out on a great deal of both preschool and kindergarten. Mavrie the monkey has kept Avrie and her family up-to-date on the latest happenings in her classrooms. Students take and send pictures of Mavrie on the playground, on field trips, and even participating in class science projects with worms and dirt, demonstrating how integral Avrie is to their class structure and experience.
When Avrie finished her maintenance therapy in November 2013, her parents were excited to have some normalcy back in their lives and for their daughter to be in a classroom with other kids her age.
“She needed the socialization,” Kate said. “Being with kids who were doing normal things was going to be the best thing for her.”
Just as she was getting settled with her new teacher and classmates, Avrie relapsed about five months later in April 2014, right after having her port removed. The rash had returned and her parents were devastated. At age 6, Avrie would undergo a more aggressive treatment for relapsed ALL with increased chemotherapy and a bone marrow transplant.
“We had to decide where the best place for her to have the transplant would be,” Kate said. “We got a few different opinions and visited another children’s hospital out of state, but ultimately decided that the best place for Avrie was Golisano Children’s Hospital. The support and care we had already had there certainly made the decision easier.”
A 10 out of 10 match was found for Avrie, the best case scenario, and she had her transplant on Aug. 19, 2014. Avrie stayed on the transplant unit for about five weeks over the summer, allowing her stem cell count to recover.
“Everyone knew us from our first stay and many of the nurses came to visit Avrie in her room,” said Katie. “They even took the time to make a ‘Welcome Avrie’ sign and had it hung up when we arrived. Her entire medical team was very supportive and understanding.”
“We knew we needed to do something stronger the second time around,” Bruckner said. “Avrie’s bone marrow transplant allowed us to totally clear out her stem cells and replant the healthy seeds.”
Avrie developed acute graft-versus-host disease (GVHD) soon after her bone marrow transplant. GVHD is a relatively common complication following a transplant where the donor cells attack the host’s body cells. The disease has required Avrie to be on high-dose immunosuppression with corticosteroids since.
As the rash goes away and she weans off the steroids, Avrie is also waiting for her immune system to get stronger.
“It’s a waiting game,” Kate said. “In the beginning, Avrie would want to go out and do what her friends were doing, but because of her weakened immune system she still can’t go to certain places. She understands and continues to have good spirits, though, no matter the obstacle put in her way.”
“Through this whole process we have really seen Avrie grow up, both literally and figuratively,” Bruckner said.
Avrie’s family deeply appreciates the support shown from the West Irondequoit community and people around the world. Orange ribbons hang around posts and trees throughout West Irondequoit in support of Avrie and leukemia awareness. Area restaurants and community groups have been integral in organizing and executing several fundraisers for the Sinesiou family and a “Prayers 4 Avrie” Facebook page is full of well wishes from people near and far.
Some of the best and most meaningful support Avrie receives is from her fellow first graders at Seneca who are anxiously waiting for their class to officially be complete with Avrie’s arrival.
Until then, Mavrie the Monkey will continue to hold Avrie’s place in her classroom and a special place in her family’s hearts.