A family copes as their 2-year-old child struggles to live

BERNE — The life of a 2-year old Berne child has become an endless succession of medical treatments since her diagnosis of neuroblastoma in May. And more is on the way.

Ava Byrne, daughter of Justin Byrne and Leanne Baker, has completed five weeks of chemotherapy but faces another 13 weeks of “aggressive treatment” far from home, her mother says.    

“Her body is responding well,” says Byrne. “The tumors are shrinking and lining up perfectly with the [planned] stem- cell transplants.”

According  to the Children’s Neuroblastoma Cancer Foundation, neuroblastoma is the most common form of childhood cancer, occurring almost twice as frequently as leukemia and  diagnosed in 650 to 750 children in the United States yearly.

It causes tumors to form in nerve tissue, most commonly in the adrenal glands.

Ava’s treatment plan  calls for her to receive  a combination of chemotherapy, radiation, and stem-cell transplants, along with any surgery required. Ava will undergo surgery Friday at Albany Medical Center to remove a tumor from an adrenal gland. The adrenal glands produce hormones that regulate several physiological functions.

Once recovered from the surgery and after undergoing a sixth week of “conditioning chemotherapy” at Albany Medical Center, she and her family will travel to Strong Memorial Hospital in Rochester where the next stage of her treatment will begin.

The family will be in Rochester and traveling back and forth to that city for many  months.

First Ava’s own bone-marrow stem cells will be “harvested” — removed from her body. Then she will receive radiation to kill any remaining malignant cells.

After her own stem cells are reinfused and after a “few weeks’  break, “ her mother says,  the process will be repeated. All together, the two transplants and follow-up radiation will require nine months to be completed, and they will be followed by four months of immunotherapy.

This double — or tandem —  stem-cell transplant  is a recent development in neuroblastoma treatment and has produced better results than a single transplant.

 Ava’s father works in construction. Her mother has taken a year off from her job at a recovery center because of Ava’s illness. She is also caring for Ava’s 10-month old sister, Addalyn. Insurance is paying for Ava’s medical expenses, her mother says, but the family is incurring a lot of incidental expenses in traveling back and forth to Albany Medical Center — sometimes on an emergency basis. The family is faced with considerably more travel expenses as well as other expenses during the long stay required in Rochester, where the family will stay at the Ronald McDonald House.

Berne Highway Department employees have collected $200 so far to help the family. Highway Superintendent Randy Bashwinger said contributions may be sent to: NBT Bank, Post Office Box 688, Schoharie, New York 12157, to the attention of Leeann Arnold. Checks may be made out to: FBO Ava Byrne.

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