Dawn and Chad Millen are realists.
They know their 3-year-old son, John, probably will never ride a school bus to kindergarten, or scare his younger sister, Charlotte, with a frog or enjoy his first kiss or graduation day.
So the Millens have had to adjust their goals for their son, who has an inoperable brain-stem tumor.
While they take him for radiation therapy five days a week and explore every possible medical option, they also are doing everything they can to ensure that his life is as happy and normal and full as it can be, for as long as it can be.
“All he knows is that Mommy and Daddy love him, that he’s warm and safe, that he’s not in pain, and that Charlotte is a pain in the butt,” his mother said, with a laugh. “We want to buy quality time, to make memories for John and to make memories for our family.”
“And maybe he will live long enough that his little sister can remember him,” Chad Millen said of 15-month-old Charlotte.
While John displayed a slight speech delay at age 2, his first symptoms surfaced at the end of September, when he became a little cross-eyed. On Oct. 5, while visiting the Buffalo Museum of Science, he began walking with his head a little cocked, shuffling and clenching his fist.
That day he went to Women and Children’s Hospital, where the next day an MRI revealed the brain-stem tumor, known as a Diffuse Intrinsic Pontine Glioma. His parents were taken into a small room and told the prognosis.
“Disbelief is the only thing I can say,” Dawn Millen recalled. “Then we had a good cry.”
The statistics are rough. Most children with that kind of tumor live between 9 and 12 months after the diagnosis, and only 10 percent live for another two years, the family noted.
“Being optimistic, kindergarten might happen, but high school probably not, and kindergarten will be a stretch,” Chad Millen noted.
So those dreams we all have for our children – including the first game or school concert, high school graduation, college, marriage and raising a family – seem like long shots for John.
“We need a miracle for him to make those milestones,” his father said.
The Orchard Park parents have come forward to tell their story, for several reasons.
“What keeps me going is prayer from other people and faith and hope,” Dawn Millen said. “This isn’t me doing this. Without all that support, I’d be hiding under the blanket.
“I’ve got hope and prayer that the big miracle will happen, but I also know it’s probably not going to happen,” she added. “I’m afraid to ask God for the big miracle and have that not happen and what that will do to my faith.”
The Millens had few options for treating their son. The tumor is inoperable, and no data support the use of chemotherapy on this type of tumor. So John is undergoing radiation five days a week for six weeks at Roswell Park Cancer Institute, plus taking steroids.
Treatment for John’s type of brain tumor can cost into six figures per year, so a benefit has been planned. The family still is looking for corporate sponsors for the event, being held from 6 to 11 p.m. Jan. 24 at Michael’s Banquet Facility in Hamburg. More information is available on the family’s website, www.johns-journey.org.
Among the many lessons the Millens have learned is to meet their young son’s needs, not their own. They wanted a big third birthday party for him on Nov. 19, with all of John’s friends. But they realized he wouldn’t be well enough to enjoy it.
Instead, they had a small family celebration, complete with about 50 balloons.
“We sat around, watched movies, opened presents, cuddled and laughed,” his mother said. “It wasn’t my expectation of what it should be. If this is his last birthday, I wanted everything to be perfect and make perfect memories.”
Some of the small things they’ve done have been painful. Like removing a large mirror, because they realize John doesn’t like looking at his reflection anymore.
John speaks in phrases now, like “Mommy, more hot dog.” Short of playfully hitting his little sister, he gets most of what he requests, whether it’s a dozen chocolate puddings a day or lying on the couch watching countless reruns of his favorite movies, “Cars” and “Cars 2.”
That’s a far cry from the younger, more active John, before all the treatments.
“He’s the type of kid you could never slow down,” his mother said. “He was running around the vestibule in church, zig-zagging between people and coming close to knocking old ladies down.”
His parents now appreciate the smallest thing, whether it’s a touching interaction with his younger sister or his doing a cute non-verbal interpretive dance of a scene in the movie “How to Train Your Dragon.”
The goals become more short-term.
John made it to his third birthday. Other goals include Thanksgiving, the end of radiation therapy on Dec. 2 and Christmas.
The Millens remain so appreciative of the community response to John’s disease. Even little things, like friends and neighbors dropping off a dinner, so that the couple can spend more time at John’s side and less time cooking.
“I try to be in the moment, being with John and enjoying the time I have with him,” his father said. “Long-term for me is about a week.
“We’re focusing on the immediate need, the immediate moment.”