They could have been posing for a Norman Rockwell painting: Nathan VanDeVoorde, 5, splashing around on a balmy mid-June evening with his sister, Natalie, and brother, Jake, in their new in-ground pool; their parents, Dave and Julie, watching attentively from a nearby deck behind their handsome Fairport home; and Nathan announcing his enthusiasm for his T-ball league.
"I like running the bases. My baseball teacher, he showed me how to run fast around the bases," Nathan said, adding that he enjoys playing football and golf as well.
It’s unfathomable, yet true, that Nathan was nearly killed without warning by meningitis last October, shortly after his fifth birthday. Two additional attacks followed this spring, causing Nathan’s parents to hold their breath in fear of another excruciating headache that would land him back in the hospital.
Deacon Robert Burke and his wife, Kathryn, are familiar with cruel surprises of this sort. In April 1996 their son Tom experienced double vision when he bent over to field a ground ball while playing for the McQuaid Jesuit High School freshman baseball team. A trip to the doctor led to an MRI and biopsy, followed by the news that he had a malignant brain tumor. Tom Burke died in July 1998 at age 17.
The experience was what is often described as a parent’s worst nightmare, Kathryn Burke acknowledged. Yet she and her husband said they’ve endured the tragedy by embracing their faith and their friends.
"You can’t, you just can’t do it alone," she said.
Though having a seriously ill child is a relatively new challenge for the VanDeVoordes, Julie said that she, also, is acutely aware of the need for support — particularly in her spiritual life, which has deeply intensified.
"When you go through something so traumatic, the lights go on," she said.
According to the Centers for Disease Control and Prevention, the survival rate for children other than infants is extremely high in the United States. The death rate is 639.4 per 100,000 live births for infants; the ratio falls to 26.1 per 100,000 for ages 1 to 4, 13.9 for ages 5 to 14 and 53.5 for ages 15 to 19.
Yet the CDC reports that nearly 20 percent of youths ages 5 to 17 have health ratings that fall below "excellent" and "very good" — meaning that a lot of American children are sick in some form or another. That became apparent to Julie VanDeVoorde during Nathan’s stays in the pediatric intensive care unit of Golisano Children’s Hospital, located at Rochester’s Strong Memorial Hospital, in October 2011 and April and May of this year.
"It really is eye-opening, the amount of people who have to deal with such difficult situations day in and day out," she said, remarking that "you really take life for granted" until landing in such an environment.
Another eye-opener is the potentially long list of stressors for families while a child is ill or injured. The VanDeVoordes and Burkes cited as examples the struggle to meet the needs of their other children; missing work time; the resulting loss of income; mounting medical bills; and deciding who will provide daily care to the child when he/she is not in the hospital.
Observing that such toxic mixtures have torn families apart, Deacon Burke said he’s thankful that he, his wife and their other five children stuck together through Tom’s ordeal.
"I think it drew them all closer together," said the deacon, who serves at St. Monica Parish in Rochester.
The VanDeVoordes said they’ve hung in there since Nathan became sick, but that daily stress runs high — especially when coupled with the reality that mommy and daddy can’t erase their beloved child’s suffering.
"He’s such an innocent little kid, he doesn’t know what’s happening to him," Dave VanDeVoorde said.
"You always want to be in control. And our control has been completely taken away from us," Julie VanDeVoorde added.
Seeing one’s child so adversely affected can spark deep questions about God’s role in such sickness.
"I have a lot of questions — why is this happening, what did we do that was so bad?" Dave VanDeVoorde remarked. His wife added that she wondered if "God was punishing me" when Nathan first became sick.
Father Paul Bonacci, pastor of Schuyler Catholic Community, acknowledged that these types of ponderings are common when he ministers to young patients and their families.
"One of the first things a priest, deacon or lay minister will encounter is the surrealism of it. Most parents do not expect their children are going to be so seriously ill or deathly ill. It goes against the archetype of growing up; suddenly the archetype is gone," he said. "Each circumstance is different, but what I try to say to them is, ‘Yeah this stinks, this is lousy’ and I think that needs to be acknowledged."
Father Bonacci said he made several trips to Rochester’s Highland Hospital a few years back to anoint Liz Amisano, a young Schuyler parishioner, and pray with her family as she battled ovarian cancer. Yet he also recalled that a mother of a sick child once screamed at him to go away when he appeared in the youth’s hospital room. He said outrage by family members is not surprising, and doesn’t necessarily mean a person has lost faith "as long as there’s still a communication with God. I will give them some psalms that express anger and frustration and still say, ‘Thanks be to God.’"
Julie VanDeVoorde, for one, is steadfast with her thanks. She said she doesn’t know why God has spared Nathan while he takes other young children, but that she’s profoundly grateful that he’s still here.
"I thank God in the night, I thank God in the morning, I thank God in the afternoon — much more than ever before," she said, adding that she’s found serenity and a deeper trust in God’s will through reading religious books and utilizing the Stephen Ministry — which offers emotional support to people in crisis — at her family’s parish, Church of the Assumption in Fairport.
The Burkes, meanwhile, said they never stopped praying for a miracle with Tom. And though the miracle didn’t occur, they’re still grateful that Tom had many quality moments with loved ones during his final weeks.
"God gave Tom time with his family and friends," Kathryn Burke said.
Following Tom’s death, Deacon Burke said he found spiritual solace in his field work for the permanent diaconate with Matt Talbot Ministries, which strives in part to support people experiencing family stress.
"Getting my feelings out, it was so helpful to me. I tend to stuff things quite a bit," said Deacon Burke, who continues to be involved with the organization as a spiritual facilitator and board member.
Streams of support
The Burkes and VanDeVoordes noted that a bevy of priests, deacons and chaplains supported them at the height of their children’s illnesses, not to mention substantial backing from the wider community as well. The Burkes said rosary groups formed in her neighborhood when Tom was ill, and that prayerful support from McQuaid was a constant. Julie VanDeVoorde said the medical staff at Golisano Children’s Hospital became "true friends and family," as have other families she met there.
Many have helped out financially. A party thrown by Nathan’s parents at the end of his first illness unexpectedly turned into a fundraiser, producing several thousand dollars for the children’s hospital. And, following Liz Amisano’s death in 2005 at the age of 20, her legacy continues through the Elizabeth Amisano Ovarian Cancer Education Fund — a grassroots movement in the spirit of such well-known children’s charities as the Muscular Dystrophy Association, St. Jude Children’s Research Hospital, Make-A-Wish Foundation and Camp Good Days and Special Times. Meanwhile, Ryan Woodhams, a junior-high student from St. Catherine of Siena Parish in Mendon, has helped coordinate lemonade stands producing $8,000 over the last two years for Alex’s Lemonade Stand Foundation, which aids in the fight against childhood cancer.
Volunteerism is another way of supporting the cause. In 2007 Linda Bolan, a parishioner at St. Dominic in Shortsville, began Boost, a program that provides tutors for children with cancer. And Kathryn Burke has logged considerable time in recent years as "The Play Lady" at Golisano Children’s Hospital through her affiliation with the CURE Childhood Cancer Association.
"I love playing with the little kids. A lot of people would look at them and just want to cry at the little bald heads, (but) they’re just like regular kids and want to play like regular kids," she said.
Kathryn Burke said her son likewise sought ways to savor childhood even during troubling times. In his final months he attended the Rochester Lilac Festival, a wedding and his junior prom, and also passed his final exams.
"Tom was never defined by his cancer," she said.
Meanwhile, Nathan VanDeVoorde’s thoughts are consumed with swimming and superhero movies as he looks forward to first grade. Although doctors still haven’t determined exactly why he’s been a repeat victim of meningitis, his family hopes they’ve seen the last of it — a sentiment expressed by Nathan in his daily prayer.
Asked what he prays for, he replied: "Never for me to get sick again."