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Christmas, a time for hope
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By Ernest Gurulé

If it’s been a while since you’ve been in a hospital, they’ve changed. The newest ones are nothing like those of even a generation ago. They’re like medical resorts; airy, sunny, almost unrecognizable as hospitals. But, they’re still hospitals. And while good things happen there, so too, do sad things, made sadder around the holidays.

“Christmas was a big burden,” said Sandi Steffes, recalling some of the holidays she and her husband spent in the hospital with their daughter, McKaila. For more than two years, McKaila fought a rare form of cancer. Neurofibromatosis, sometimes called NSF. McKaila was ten when she lost the fight.

In the more than dozen years that have passed, Steffes remembered how the doctors and nurses did their utmost to make the unimaginable, for them, the inevitable, a bit more bearable, here and at Houston’s M.D. Anderson, a world-class hospital where they saw specialists.

Despite the shadow that darkened those days, in the hospital and at home, Steffes said her first job was not caring for a child with cancer. Her priority was being a mother to McKaila and McKaila’s younger brother. “All I knew is that I had two kids. I was trying to keep their lives as normal as possible.” Some days it was a masquerade, hiding from the reality that she knew would come but trying as hard as she could to make the good days better and the bad ones the best they could be. “They deserved that.” But Christmas was a test.

Cancer can be devilish. Some days its anger is palpable, unrelenting. It’s an illness that first tries to break its victim, then its victim’s loved ones. Other times, it seems to take a break. On McKaila’s last Christmas, it took a break, at least for her. For Steffes, this all too brief respite was a relief. McKaila could be with her family at home. But it would be the family’s last Christmas with the little girl whose life was art and dance and sports. “I knew she wasn’t going to make it to the next Christmas,” she said. “It was so overwhelming. I did everything I could to put a smile on my face.”

For the Steffes family, the heartbreak has ebbed. But this holiday season, other families are tethered to a hospital lifeline. At Childrens Hospital of Aurora, staff does everything it can to lighten the load. “We certainly try to meet all the needs,” said Kathleen McBride, Director of Children’s Association of Volunteers.

Most of the hospital’s young patients are going to go home and resume a normal childhood. But while they’re there, the hospital does everything it can to focus on a positive experience and meet their needs. “We’ll let families know what they might expect,” said McBride, who’s been doing this work for more than three decades.

Beside making certain the kids and their families are comfortable on the medical side, McBride says the same effort is made keeping the kids focused on the emotional side. “From the time they walk through the door there is someone to support the patient,” she said. The hospital lobby is often ground zero for entertainment, including magic shows. But, said McBride, “there are playrooms on each of the floors.” The hospital also has comfort dogs if a child desires a bedside visit.

Making a child’s experience in the hospital is an on-going effort. But it’s not just Childrens Hospital Colorado. An effort to make a hospital stay less stressful is underway at nearly all hospitals. McBride says there are more than three thousand volunteers across the state, “the oldest is 97 and the youngest is 13.”

For children who’ll spend Christmas at the hospital, said McBride, “our Santa will be here.” He’s kept this appointment at Childrens every year for the last twenty-three years. A toy drive also means young patients will get a gift during their stay.

Because of the diverse population that Childrens Hospital serves, it has established a “medical communicators office,” said McBride. The office has available someone who can answer a family’s questions in a number of languages. It also has the facility to assist patients and families who communicate in sign language.

But even with a positive experience---which most are---holiday stays in the hospital can resonate with families for years. One such family, said McBride, has been volunteering at Childrens during the holidays for twenty-three straight years. “Their son was a long-term patient.”

For more than two years, Steffes and her husband came to know the various staffs, the doctors, nurses, even administrators, in Denver and Houston. They were, she said, treated thoughtfully and respectfully. “So many people were so kind and generous,” she remembers. But the memory of one doctor in Houston stands out. “Did we do everything we could,” they asked him. “He assured us that we did. That was huge to hear it from her doctor that we didn’t fail her in any way.”

Steffes has met with numerous parents living with the challenge of a child perhaps facing the worst possible outcome. Every parent, she said, must find their own way. “As I look back and think about how hopeless and grim it seemed, life can still be good. It takes time. But I still miss her every day of my life.”

After their daughter’s death, the Steffes established a foundation in her name. Proceeds from the annual ‘McKaila’s Ball,’ a kickball event held each fall, go to a scholarship awarded to a deserving student at their daughter’s school, Denver’s Saint Vincent DePaul Catholic School.





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