For Eric
A nurse's profound journey helps comfort young cancer patients and their families…an honors the son she lost

By Glen Fest
June 18, 2003

Calvin was unresponsive. His parents sat nearby, knowing their bedside company was now a vigil. He was only 15.

Winnie Kittiko remembers that night well. A hematology/oncology nurse in the cancer ward of Children's Healthcare of Atlanta, Kittiko had cared for the teenager throughout his hospitalization. Leukemia was ravaging his body and devastating the couple's spirits.

She made a point to comfort and speak to the parents daily, to be more than just the caretaker who arrived only when called. She earned their appreciation for the little things, such as timing her pager to buzz every 27 minutes to change the boy's IV medications-preventing the annoying pump alarm that would otherwise wake him every half-hour.

The 24-year veteran nurse talked with the parents again that final night, when Calvin was not yet gone, but not coming back. She walked over to the bed and handed the parents a photo of another boy. The photo captured a tall, thin, handsome kid, roughly the same age as the couple's son. He sported an effortlessly wide smile, highlighted by a hint of peach-fuzz facial hair.

"This was my son, Eric," Kittiko said.

The right words

What do you say to the parents of a dying child? "I'm sorry"? "How are you coping?"

Kittiko has found the right words because of her own experience. Four years ago, the Atlanta nurse lost the eldest of her three children after his nearly three-year battle with bone cancer.

Eric Kittiko was only 17, still enjoying parasailing trips in Florida and reading John Knowles when he died in April 1999. His mother spent most of the preceding 31 months tending to him, from the time they heard the shocking diagnosis until the final week when Eric told her, "Mom, I think I'm dying."

Those last days of Eric's life brought Kittiko her deepest grief, yet led her to a discovery she said was needed for her: the ability to remain appreciative of the time at hand and to look beyond the regrets of experiences that will never happen.

"How I looked at it with Eric's death … I got to plan for his birth, and I also got to plan for his death. And although I wouldn't have wanted to do it, a lot of families don't get that privilege," Kittiko said. "Their children are taken from them suddenly, without any forewarning. And while I can't say that one's better or worse, I decided I would make the best I could out of a bad situation."

After his death four years ago, Kittiko chose to use those lessons in making a courageous decision in her profession. A lifelong pediatrics nurse who experienced the happiness of new beginnings, she dedicated herself to pediatric oncology nursing and education, helping those who need help in their life's coda. And she did it at the risk of reliving her own pain.

"A lot of parents, at that time, they're so wrapped up in their own situation, most of the time they're not real receptive emotionally to hearing somebody else's story," Kittiko said. "The one family I actually told [about Eric], the night before their son died, I used that as an introduction just to share with them that I had been through a similar experience.

"It was an opportunity for them to talk about what their concerns were" for their child's final moments, Kittiko said, "and not necessarily so much to share my story, but to offer myself for whatever questions they might have. I remember this particular couple, especially the dad, asking about siblings. He was real interested to hear how my daughters coped and how we helped them to cope with it."

All-star

Baseball was one of Eric's passions. He not only loved to follow his Atlanta Braves, but at 15, he played well enough to merit selection as a local all-star second baseman. At 5-foot-8, he was making big steps toward fulfilling his big league dreams, both figuratively and literally: A growth spurt pushed his shoe size from 8 to 12 in just one year.

In the summer of 1996, Eric went to a weeklong baseball camp to hone his skills. He was named the camp's most improved player, made all the more remarkable because of a persistent left knee pain that hobbled his fielding and running ability. Kittiko said no one, including Eric, remembered how he hurt his knee-a bike fall, a baseball slide or a long hike through his beloved North Georgia Mountains could have strained it.

"He was always an outdoor kid," Kittiko said. "I have pictures of him riding his tricycle over a mound of snow when we lived up in Michigan. Nothing detracted him."

The Tuesday after Labor Day, Eric could not stand the pain any longer. His mother took him for X-rays and, that September afternoon, they learned of a 7- by 9-centimeter tumor found in his left femur. A biopsy result the next Monday revealed a malignancy, and Eric was diagnosed with osteogenic sarcoma, one of the most common types of bone cancer disease in children. The Kittikos had no family history of cancer, and doctors had no answer to the potential cause of Eric's cancer.

"I was completely stunned and so was Eric," Kittiko said. "Eric had been very healthy. He had a broken collarbone when he was 3, and had stitches twice. Nothing else."

He started a chemotherapy program within weeks, on a day that brought a new wrinkle to the family's struggle. Youngest daughter Katie had her 13th birthday on Eric's first day of treatments. Even with friends, presents and a cake, Katie's special day was robbed of its celebration. Kittiko said she found herself at a loss to help her daughters cope.

"What people say about healthy children is that 'they just need to understand.' I don't accept that philosophy," Kittiko said. "How could I expect them to understand when it's hard for me to understand?"

Life after death

Since moving into her nursing education administrative role in May 2001, Kittiko doesn't see many patients these days. But she has a regular visitor.

On certain mornings a young boy peeks through her open door, having discovered a freely accessible candy jar in her office near the family kitchen at Atlanta Children's. He steps inside for a treat upon Kittiko's warm invitation.

His candy quest has given Kittiko the opportunity to befriend his mother, who brings the child to visit his hospitalized brother being treated for acute lymphoblastic leukemia. Kittiko talks with her regularly to follow the boy's progress, but mainly listens. Because the child's prognosis is good, she refrains from talking about herself and Eric.

"She is not someone I would necessarily tell," Kittiko said. "I think with a lot of people, [Eric's story] can give them hope that there is life after death, and that I appear to be coping well and surviving and doing fine. But a lot of parents are going to believe their child is going to be a survivor, and that's what they need to believe" and focus on.

The Kittikos believed early in Eric's illness that he would beat the cancer, especially when finding out that the survival rate was between 70 percent and 80 percent, according to Kittiko. Eric learned to talk with his sisters, Katie and Becky, about his disease and reassure them of his will to fight, even though nine months of chemotherapy wreaked as much havoc on Eric's frail system as it did the tumor, it seems.

"He had a lot of re-admissions between [sessions] because his blood counts would drop so far, and then he was nauseated," Kittiko said. "He had to have a feeding tube into his abdomen so we could give him two feedings at night."

In his regimen, Eric would have three treatments in 30 days-a set of intravenous drugs on the first day, another set on day 21 and a repeat of those drugs on day 28 before the cycle started again just seven days later. Some drugs took three hours to administer; some, nearly three days.

Killing the tumor before it metastasized in the lungs would be crucial to his recovery. He had already earned a small victory in December 1996, when doctors ruled out amputation and performed a limb salvage surgery that substituted 18 inches of Eric's femur and his knee joint with a cobalt chrome replacement. His physical therapy went slowly as he worked through his chemotherapy, but he still was walking around quicker than anyone expected, Kittiko said.

His chemotherapy ended in June 1997, and he appeared to be in remission.

Mirror image

Cameron Shaw is a childhood cancer survivor. Diagnosed in the mid-1980s with leukemia and lymphoma, the Atlanta sales and marketing executive found himself in a two-prong struggle in those years.

"From my experience, being a teenager and being a child is difficult enough," said Shaw, 32. "And when you're also trying to get healthy …"

Shaw saw a mirror image of himself while working as a volunteer counselor at Camp Sunshine, an Atlanta-area camp offered each summer for childhood cancer patients. In a cabin with other sick boys and two adult counselors, Eric Kittiko was withdrawn and shy like Shaw was as a 14-year-old. For the first time, however, Eric was hearing stories about survival from people who were past their affliction. He grew especially close to Shaw and his story.

"He reminded me of myself," Shaw said. "When I was sick, I was a shy kid like him. But when you're in a cabin with six other kids with cancer, it brings you out of your shell."

A summer of skeet shooting, archery and fishing with kids like himself improved Eric's spirit and outlook. "In the beginning, it felt like he was going to beat it," Shaw said.

In the fall of 1997, Eric started his ninth-grade year at a new school after a year's absence from education. He made a few new friends while maintaining close ties with his friends from the cancer ward and camp. Putting his cancer into remission somehow sparked his burgeoning academic skills-his GPA improved to 3.2-and prompted him to establish close ties with his literature teacher.

He also became attached to A Separate Peace, a novel by John Knowles that captures a teenage boy's regrets about never acknowledging a late classmate's friendship.

Eric's good fortune did not last. A CT scan of his chest in December 1997 showed tumors had spread to his lungs. He would undergo two surgeries in the months to come, with the tumors returning each time.

Eric and his family discussed his options with the doctor, measuring his diminishing odds against the quality of life he wanted to have. In an essay he wrote for school called "My Separate Peace," Eric recalled how he "felt pressured and confused because this was a decision about my life. I don't think it's fair I'm only 16 and I have to decide whether I live or die."

Eric opted for the treatment, but days before he was to begin them, another setback occurred. In a postop scan in June 1998, tumors had returned to his lungs and now were inoperable. A subsequent CT scan revealed a 4-centimeter brain tumor that was inoperable as well. There would be no more operations and only limited chemotherapy, Kittiko said. "It was enough to keep the tumors under control to a degree, but not so harsh of a chemo that he couldn't be happy and enjoy what he was doing."

Friends and family made sure Eric experienced all he could imagine in the time he had left. He was a guest of a NASCAR racing team, and flew down in a private jet to watch the Daytona 500. He went canoeing. And he returned to Camp Sunshine, where Eric was interviewed for a "CBS This Morning" segment about the camp.

Eric accomplished all this, even though he was not expected to live through the summer of 1998. Throughout that fall and winter he received home health treatments, and although he did not experience a total physical deterioration, more accommodations were becoming necessary. During spring break in March 1999-just weeks before his death-Eric and his family traveled to Cocoa Beach, Fla., where he enjoyed the thrills of flying above the waves parasailing with his younger sisters and a neighbor friend. The trip was possible only because Eric's home hospice care provider was able to temporarily ship his medications and treatment equipment to the family's vacation lodgings.

Despite his eagerness for the outdoors, Eric's growing weakness was evident. He needed IV fluids daily and medications to fight back a fungal infection in his brain. He told Kittiko at that time, "Mom, just pray that it happens soon. I'm tired of fighting and I'm ready to go."

Eric died quietly on a Sunday morning after retiring to bed the evening before. His large extended family of cousins and church friends came by to pay their last respects. Flowers, gentle music and fond memories of Eric permeated the room much more than tears.

"A lot of the kids sat around him, listened to music and talked about Eric," Kittiko said. "They just did what kids needed to do. And it was great."

Always on my mind

Kittiko said she was steeled for Eric's passing through a long period of "anticipatory grieving." Life after Eric, however, was not something she could have prepared for.

For about a year after his death, Kittiko's thoughts and daily life still involved Eric. She wrote a volume of memoirs about him that she would like to publish one day. She became involved with other parents of cancer victims, including volunteering at Camp Sunshine.

It was while looking for Eric's medical records to help a parent she met on an Internet listserv support group that she had an epiphany. While thumbing through Eric's belongings, she stopped herself from another crying spell.

"I realized I was opening up old wounds that I don't need to be opening up anymore," Kittiko said. "That I was healed, and I was happy because I came to the realization that there was no need for me to keep going back over these things and trying to remember."

Kittiko's commitment to move on also came through a calling that was encouraged by Eric's doctor. By going into pediatrics oncology, the doctor told her she could make use of what she learned and use those experiences to help other parents, Kittiko said.

Before Eric's illness, Kittiko worked in the hospital's computer department handling documentation and the order-entry system. When she returned to the hospital in early 2000, she applied for a position as a staff nurse, working 12-hour shifts in the oncology area. It was, first and foremost, a patient care setting she needed to serve before moving into the nursing education role she has in the department today, Kittiko said.

But it was also her chance to make a difference.

"People say, 'I bet Eric must be really proud of you for doing what you're doing,' " Kittiko said. "But anybody who knew Eric would have known he had high expectations. He would have expected me to do this. Granted, he may have been proud I was doing this, but he would have expected it."

A miracle

Kittiko believes her discussions that night with Calvin's parents helped them in finding some of the answers they were grasping for, and also gave them a preparation for closure. She told them how much caring for their son helped her, too.

"I told them it was a privilege to take care of their child. To be the one there when that child is passing from life here on earth to life on the other side, which, to me, is another miracle," Kittiko said. "It's just one we can't see the end result of."

Contact Glen Fest at glenf@nurseweek.com