|Heather McNamara, 11, is pictured at her family’s Long Island home. Four years ago, she survived a risky, 23-hour surgery that removed a tumor and a number of organs. (photo by Charles Orrico)
When Heather McNamara, 11, wakes up each morning, she thinks about all the things she might do that day: school, swimming, soccer or shopping.
A few years ago, it was different. “I didn’t know if I was going to wake up,” she said.
At the time, Heather, then 7, was preparing for surgery at New York-Presbyterian Hospital for a malignant inflammatory myofibroblastic tumor that had afflicted her for years. Thankfully, the procedure ultimately succeeded in removing the tumor and restoring Heather to health.
“It was like a miracle,” said her mother, Tina McNamara, after recounting the years of struggle, fear and frustration that she and her husband, Joe, a member of Rev. James V. Rogan Council 1816 in Central Islip, N.Y., endured as they watched their daughter suffer.
Since then, Heather and her family, members of St. Peter the Apostle Church in Islip Terrace, have made a point of showing their gratitude to both God and the hospital. Heather has appeared in television ads for New York-Presbyterian and has gone back to visit and encourage other patients, especially children.
The family has also been actively involved in their parish and community, doing things such as organizing blood drives, raising money for juvenile diabetes research and visiting an area soup kitchen. And they plan to do more.
HOPE FOR A CURE
Heather’s health trials started at age 4 when she began experiencing severe stomach distress and vomiting. Doctors were at a loss to diagnose the problem, and some even expressed doubt that the symptoms described by the family were real.
Eventually, physicians found a tumor when they were preparing Heather for a feeding tube. A seemingly successful surgery to remove the growth followed. Six months later, however, the tumor returned. In addition to the physical pain, Heather became bloated, leading to her being teased by some of her peers. Eventually, she needed a wheelchair.
For close to a year, the McNamaras searched for a hospital that could help Heather, contacting several institutions that were well known for treating children with cancer. “But nobody would touch me,” Heather said. “I didn’t really understand. I just knew I was sick.”
The McNamaras found hope after learning that Miami Children’s Hospital could perform a multi-visceral transplant, a procedure by which the patient’s organs are removed and replaced with healthy organs.
At first, there was difficulty getting to Florida, but the Make-A-Wish Foundation contacted the family to offer assistance. The organization sent the McNamaras on a trip to Disney World; from there they went to Miami.
Initially, everything appeared hopeful. According to Tina, the hospital treated Heather, carefully providing nutrition to ensure that she would be ready for surgery. She was no longer bloated or in need of a wheelchair. Yet as the preparatory phase came to a close, the hospital announced that it could not perform the surgery after all. The expense involved, the difficulty of obtaining so many donated organs and the risk of the tumor returning again were too great.
“It was crushing,” Tina said.
The family returned to Long Island, and a staff member at Miami Children’s referred them to New York-based Dr. Tomoaki Kato.
After examining Heather, Dr. Kato concluded that he could remove the tumor as well as her spleen, stomach, pancreas, gall bladder and appendix, and that she could survive without having to replace those organs with transplants.
When the family was told that Heather would need a new liver, her father prepared to donate part of his own.
“That was brutal,” recalled Joe, “but I was willing to do it.”
As it turned out, Dr. Kato was able to save Heather’s liver without a transplant. Still, the surgery was grueling, lasting almost 24 hours. Meanwhile, the family prayed.
“Until that time, I really didn’t pray,” Joe said, “but I prayed that day. I told God I would be a better person. I’d do whatever it takes.”
The McNamaras were not the only ones praying for Heather. “We had so many people praying: Catholics, Protestants, Jews, Jehovah Witnesses. We’re talking about thousands of people,” Tina said.
After the surgery, she noted, “The doctors told me that they felt like something was happening, a presence.”
“I felt like someone was holding my hand,” Heather added, even though she saw no one other than the surgical staff — whose hands were full.
“This whole experience convinced me that God is there,” said Joe, who now regularly attends Sunday Mass with his family. “When you need God, he is there.”
Although the surgery was successful, it was “a long road” to recovery, Tina said. Heather had to stay in the hospital for several months.
After her release, Heather returned to normal activities. “I play soccer and swim, and I get my nails done,” she said, holding up her hand to show the red, white and blue colored fingernails. “And I go shopping.”
Although Heather and her family were happy to return to normalcy, their lives were also changed. They recognized meaning and purpose in their trials and their blessings.
“When you see other people going through something, you can be concerned, but it doesn’t fully hit you until it happens to you,” Joe said. “You realize that life can change in a heartbeat, and we wanted to do what we could for others.”
Tina added, “We want to give back.”
One way the family has done so is by allowing Heather to share her story and bring comfort to others. She has spoken on behalf of the hospital and has visited patients, particularly those close to her age.
“Heather inspires people,” said her mother, who recalled one girl who had been struggling with her own recovery from surgery.
“I taught her some tricks,” said Heather, adding that she showed the girl how to move around while avoiding pain, without pulling on her stitches. By the end of the visit, the patient was ready to get out of bed and was more positive about her recovery.
On another occasion, Heather went to the hospital with her Girl Scout troop, performing a talent show to offer comfort to patients.
Since her pancreas was removed, Heather has developed diabetes and must take insulin. As a result, the family has started raising money for the Juvenile Diabetes Research Foundation — collecting about $40,000 so far.
And because Heather relied on donated blood for her surgery, the family has organized three local blood drives and is planning another.
“She also appears in advertisements for us,” said Doreen Fiscina, of the Long Island Blood Center. “When you consider all that she and her family have been through, it’s incredible.”
Local Knights of Columbus councils learned about Heather’s story after General Agent Larry Sarraga of Suffolk County contacted the family.
“[Joe] was interested in insurance but said that his daughter, Heather, was uninsurable because of her medical history,” Sarraga said. “I explained our family fraternal benefit program,” which guarantees insurance for children of K of C members.
Members of the Knights of Columbus Suffolk County Chapter have been so intrigued and touched by Heather’s story that they invited her to speak before a recent chapter meeting July 12. They also took the opportunity to honor her and her family for their charitable work.
The McNamara family is happy to have opportunities to help others, but they also focus on what they see as the bigger picture.
“They are a very involved family in the parish,” said Rose Oldham, faith formation director at St. Peter the Apostle Church. “Mrs. McNamara brings a great deal of excitement to teaching the children about God.” She added that Heather is also active in the parish and “always willing to help out.”
“I want to teach those kids that if God is in your life, anything can happen,” Tina said.
Through it all, Heather appreciates her family and all the sacrifices in her long journey to health and wholeness.
“It wasn’t easy,” said her sister, Stephanie, 14, who feared she would lose her little sister. “It’s so important that we appreciate each other. I believe that God played a part in all of this.”
Though she starts each morning thinking about what she might do that day, Heather said, “I also take time to pray. I want to thank God for giving me another day.”
PETE SHEEHAN is a veteran reporter who writes from Long Island, N.Y.