April 6, 2018 at 1:53 p.m.
Grace helped couple survive child's death
Danny and Kris Ferris make no secret of the fact that they've struggled with their faith. When you've lost a toddler to cancer, the struggle is inevitable.
But faith, said Mr. Ferris, "is the only thing that kept us in the game. There's no way you can lose a child and not have God with you."
Their son, Daniel, was born June 19, 1997. He died last August, just five months after being diagnosed with a primitive neuroectodermal tumor, a type of brain tumor so virulent that only four percent of patients who have it survive.
Why me?
Mrs. Ferris was nine months pregnant with another son, Michael, when Daniel passed away. "I used to think, `Why am I pregnant while going through this?'" she remembered. "Afterward, I said, `This is God's plan.' It's God's way of saying, `You can love again.'"Before Daniel's illness, the Ferrises described themselves as staunch Catholics who so loved their parish, Our Lady of the Assumption in Latham, that they continued to make the trek there after moving to Mechanicville. They team-taught religious education, took part in a Bible study course and brought Daniel along to the many parish functions they attended.
Daniel was a joyful boy who loved Elmo and the Teletubbies, and delighted in ladybugs. His mother, whom he often called "Hon" in imitation of his father, said he was so gentle that he would give up a toy to another child rather than fighting for it.
First signs
Last Easter Sunday, Daniel was laughing with his cousins at a party when the adults noticed that one side of his face wasn't smiling. Since his mother had had Bell's palsy the year before (a condition that causes facial paralysis), they thought he might have the same problem when they brought him to the emergency room at Albany Medical Center."We figured it was a virus or something like that," Mr. Ferris remembered. "We were taking Easter pictures in the emergency room."
Instead, a doctor looked at Daniel's X-rays and said, "There's a lesion." The next day, a neurologist explained further: "He has a tumor, and it doesn't look good."
"This is a dream. You can't tell me there's nothing we can do," Mrs. Ferris remembered saying. But since the tumor wrapped around Daniel's spinal cord, doctors told them it couldn't be removed surgically.
Surgery
The toddler was eating and acting well, so he was sent home while the medical team decided how to treat him. But within days, the tumor cut off the flow of cerebrospinal fluid in his body, giving him a massive headache and finally a seizure.His doctors decided to try surgery. Afterward, they told the Ferrises, "It was malignant, and we only got 40 percent of it. He won't make it to his second birthday."
The only options were chemotherapy and radiation, the latter risky for young children because it destroys brain cells. "If he survives, he'll never be able to live on his own," doctors warned.
"Fine. Small potatoes," said Mr. Ferris. The couple agreed that they would rather have their son alive and developmentally delayed than give up.
Coping with disease
First, Daniel had two rounds of chemotherapy, doing so well that even his doctors were hopeful. Then the toddler had another seizure, and an MRI revealed that the tumor had doubled in size.As the Ferrises struggled to decide whether to try radiation, Mr. Ferris remembered a family he often saw in church whose son had cerebral palsy. Knowing that Daniel could develop similar disabilities from the radiation, "I thought, `That's not a problem,'" he said. "How much love a parent has for a child!"
The couple opted to continue treatment. Daniel tolerated his first four weeks of treatment as an outpatient well, waking up demanding "mac-cheese" -- macaroni and cheese, his favorite food. But during the fifth week, he started to show negative signs.
"We were scared," Mrs. Ferris said. "His eyes started to close. He was lethargic; he had apnea; he kept choking. He ended up having to be admitted."
Daniel rallied enough to have a second birthday party in the hospital with a visit from his beloved Elmo. The Ferrises believe "Jesus stepped in and gave Daniel the strength" to enjoy the celebration.
Saying goodbye
Soon afterward, the radiation treatments had to stop. Looking back, Mr. Ferris admitted he had been in denial: "We were so intent on making him better, I don't think we looked at anything else."Doctors told the couple that Daniel would not survive much longer. At first, Mrs. Ferris was terrified to bring him home, fearing that something would go wrong and the couple would not know what to do. One day, at the end of July, she went into the bathroom in Daniel's hospital room to cry alone. When she came out, she told her husband, "I want to go home."
Hospice nurses settled Daniel in a large bed in the living room, where his parents could lay next to him and have easy access to all of his medications. Daniel occasionally squeezed his parents' hands, his only form of communication by then.
During the next few weeks, a host of visitors supported the family. Rev. Geoffrey Burke, their pastor, noted that Daniel looked as peaceful as Rev. James Cribbs had before he died the year before. The thought comforted the couple, who saw it as a sign that Daniel would be okay in heaven.
The Ferrises were amazed at how much people went out of their way to help. Rev. John Hardiman, former pastor of Our Lady of the Assumption, even insisted on calling from his own hospital bed to say a prayer with the couple.
Thief in the night
The priest died a week before Daniel. Later, after seeing two deer in a field -- one large, one small -- Mrs. Ferris would say, "There's Father Hardiman and Daniel."Not knowing when Daniel would die scared his parents. Mr. Ferris kept recalling the Bible verse about death coming "like a thief in the night," so he sat up all night, listening to Christian music and playing with a Nintendo Gameboy to stay awake.
Mrs. Ferris told The Evangelist that she postponed her last OB-GYN appointments before Michael's birth for so long that her doctor worried that he wouldn't see her before the baby was born. But she was afraid that if she left the house, Daniel might die while she was gone.
Still, the Ferrises never gave up hope that Daniel might recover. Until the week before he died, they were calling Children's Hospital in Boston, trying to get doctors there to look at his MRIs.
Losing a child
At one point, Daniel had an apnea attack that lasted so long, it seemed that it was the end. Mrs. Ferris cried as she remembered screaming, "No! You're not ready!" Surprisingly, Daniel recovered and had no more attacks the rest of the week.On the afternoon of August 28, however, the Ferrises realized the end was near. They lay next to him in bed, hugging him, until he quietly passed away.
Not long before, Mr. Ferris had learned that a co-worker's wife was also dying, and that she'd had a vision of a child that seemed to be Daniel. "Up here," she told her husband, "all the little kids have hair."
Mr. Ferris' sister also had a vision in which Daniel appeared and said, "Tell Mom and Dad I'm okay."
Help from heaven
The Ferrises said that they could not have survived the next few days without God's help."Afterward, we would say, `That was Jesus -- He helped us get through this,'" Mrs. Ferris recalled. "I look back and think to myself, `How did I get through picking out a coffin? How did I sit at the wake for five hours?' Plus being pregnant -- I carried Michael to term. I fall apart now more than I did then. Something comes and gets you through it."
God's gift
Michael was born Sept. 8, 11 days after his brother died. "Michael has definitely been a blessing," said Mr. Ferris. "I come home and he's got that big Popeye grin on."His wife believes that through Michael, "God gave me back that motherly thing." The arms that ached to hold a child after losing Daniel almost immediately cuddled his brother.
Still, it has taken time for the couple to find peace after Daniel's death. His mother remembered telling Rev. Ken Gregory, "I'm really mad. I feel like God let us down."
The priest answered, "You got your miracle -- just not how you wanted it. Daniel is healed." Besides, he said, it's all right to be angry with God: "He can take it."
Keeping faith
Mr. Ferris allowed that "there may have been times when I felt my faith was getting weaker. Our relationship was strained, too. But I feel like it's getting better. There aren't too many things that rattle me any more. I feel like I've seen the worst."The Ferrises feel that Daniel taught them about what's really important in life: each other. Mrs. Ferris no longer worries whether her house is clean, if Michael wants her attention instead.
"If he wants to be held all day, then I hold him all day," she said. "Family is the most important."
Spirit of Daniel
Prayer and certain songs at church are still a struggle, but the couple are gradually returning to their parish activities. Mr. Ferris is a sixth-grade catechist again, and he and his wife recently attended their first parish dance since Daniel died."It's really hard to have a good time and not have him with you," said Mrs. Ferris. "He was at the age where he was doing everything. It's just not fair he's not there."
But the Ferrises feel that Daniel is still with them in spirit. The hardest time of Mr. Ferris' day is being alone in his Federal Express delivery truck, but on his way home, he'll often hear a song on the radio that makes him smile and he'll say, "Thank you, Daniel."
The ladybugs and chickadees that Daniel loved have appeared everywhere the couple go, including the new house they will move into soon. Seeing small signs like these, said Mr. Ferris, "I always think of Daniel. I don't know what it is, but it feels awful good."
Lasting memories
Trying to find meaning in Daniel's death has led the couple to a new project: cookie-making. Mr. Ferris' homemade cookies have long been in demand from friends and family; now, he plans to market several varieties to raise funds for charities like Lake Luzerne's Double-H Hole in the Woods Camp for children with serious illnesses.A former boxer, Mr. Ferris also hopes to use his connections to famous people to launch a celebrity golf tournament for charity. Already, he has spoken to an NBA referee and representatives of several renowned boxers.
"This could be huge," he declared. "It's almost like it was meant to be.
"Things happen for a reason," said Mr. Ferris. "I believe Daniel must have been very, very special to have been called so early. I know God doesn't make mistakes."
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