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Navigating the Labyrinth
A Day in the Life of a Family Fighting Childhood Cancer
May, 2005 - Issue #7
Thirteen-year-old Lauren of Stevenson Ranch was hospitalized at Children
Thirteen-year-old Lauren of Stevenson Ranch was hospitalized at Children's Hospital in Los Angeles while receiving a bone marrow transplant after a brain tumor relapse
"Step out of the way," directed the security officer in front of Mattel Children's Hospital at UCLA. It was a brisk November morning and the hustle and bustle of a thriving hospital community was reflected by the white coats, multicolored scrubs and business-attired personnel buzzing around the main entrance to the outpatient facility of one of the largest hospitals in the United States. To add to the surreal experience, ambulances pulled up in droves to greet passerby with a loud wailing siren and flash of bright lights. We were only there ten minutes, but we couldn't wait to get inside.

At a glance you could tell who the seasoned veterans of this environment were; they didn't even flinch at the morning's flurry. It was the small girl holding tightly to her mother's hand, it was the father who pulled his tiny son into his arms that reflected the plight of the unsuspecting pediatric patient. Imagine driving 40 or 50 miles in Southern California traffic, jockeying for parking for 20 minutes and then having to navigate a chaotic entrance to a major southland hospital - with a cranky toddler at your side. Just the beginning of typical day for a family fighting cancer.

As part of the Family Outreach Program for the Michael Hoefflin Foundation for Children's Cancer, we provide toys to Pediatric Oncology departments at local cancer centers. On this particular day, we arrived, feeling very Santa-like, with three large bags of toys, although I doubt Santa ever had to squeeze into a crowded elevator in order to deliver his goodies. We managed to present our gifts to a very busy outpatient clinic. The toys we bring are given to kids who have to endure difficult procedures, like lumbar punctures and bone marrow aspirations. For a child, the thought of getting a new G.I. Joe or cuddly Minnie Mouse doll is enough to evoke cooperation, which benefits both patient and parent.

Today, we had a special gift to deliver to little Mikey, a very special 4-year-old boy with leukemia who was recovering from a bone marrow transplant completed a few months prior. Mikey had not been able to return home and remained hospitalized for months after his transplant. Unable to come to us, we came to him, which was no simple task.

Getting to the inpatient facility meant having to cross the street, accompanied by lost-looking individuals hoping to navigate their way to the room of a loved one. While there were no sirens wailing on this side of the street, it was easy to get caught in the current of focused employees. The in-patient facility was a daunting sight, looming over the healthy glow of Westwood's college atmosphere. It is an entity all its own.

If you have ever had to enter the labyrinth-like corridors of a major medical center, you know the frustration of trying to get from one place to another. Some facilities have color coded lines or catchy themes to follow in order to ease the frustration of feeling like a mouse in a maze. It is an actual fact that UCLA's corridors are longer than those of the Pentagon! Luckily we did not have to rely on arrows and lines to point us in the right direction. We had a lovely escort named Bette to lead the way, but most parents entering the medical world do not.

Young Mikey, 4, was hospitalized with leukemia at UCLA medical center in Westwood.  Mikey lost his battle with ALL this past December
Young Mikey, 4, was hospitalized with leukemia at UCLA medical center in Westwood. Mikey lost his battle with ALL this past December
We eventually arrived at our destination. Like so many children with cancer, the therapies required to save Mikey's life could also contribute to ending his life, so great precautions were taken to keep him as germ-free as possible. These children have extremely vulnerable immune systems and require long periods of isolation from friends and family and at the same time require large teams of medical professionals to care for their needs. Mikey's room had special filters which kept the air as pure as possible.

We met him and his father walking in the hallway with his dad pushing his I.V. pole, like a scene from Star Wars with one of the little fuzzy-headed people in drab gowns reaching down to their ankles. Mikey was in his petite hospital gown and face mask, holding his dad's hand who was dressed in standard parent hospital attire: sweat pants and t-shirt. Mikey smiled shyly; another new face in his life, no privacy, the constant interruption of the beep, beep, beep from the infusion pump always around him.

Although it was Mikey we were visiting on this particular day, it could have been any of the children we serve. It could have been 4-year-old Elizabeth fighting pancreatic cancer or 14-year-old Nick battling Ewing's Sarcoma. It could have been Children's Hospital Los Angeles, City of Hope, Cedars Sinai or Kaiser Permanente in Woodland Hills or Sunset Boulevard. So many children faced with enemies they cannot see or hear, like little soldiers, they push their weapons, their I.V. poles, carrying their greatest defense, chemotherapy. They forge ahead, day in and day out through treacherous procedures and they come up smiling whenever possible, eager to take a moment to open a gift, play in childish bliss and leave the battle for a moment of rest.

Mikey opened our gift, a large stuffed Mickey Mouse and tickets to Disneyland, which had been a wish, requested by him and donated by the College of the Canyons staff. He smiled and began passing out the tickets to those of us in the room, inviting us to go with him, another heartwarming reminder of the pure generosity of a child.

Sadly, the trip to Disneyland was not to be. Mikey, like Justin, Megan, Danielle, Griffin, Oscar, Briannica, Grace and an endless list of others, will not be going to amusement parks, graduating from high school or someday having children of their own. They fought their cancers valiantly but their young bodies could not conquer the enemy. Unless there is a Magic Kingdom in the heavens, where little Mikey's dream can be fulfilled, it is up to us to fight for these little ones, and so we do.

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Lisa DeLong is the outreach coordinator for the Michael Hoefflin Foundation. Andy Gallardo is the organization's executive director. For more information on how to get involved with the Michael Hoefflin Foundation for Children's Cancer, please call 250-4100 or visit www.mhf.org.
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