"God's Burdens"

-by Silke E. Deeley, Chicago, Illinois

We have often heard that God never gives us a larger burden than we can carry. How often we had heard that, and even espoused that very phrase to friends and acquaintances who were going through difficult times. We never dreamed that someday it would pertain to us.

The year 1984 found us wondering why we were spending so much time in doctors' offices with our daughter Alyssia, who had just turned 6 in July. One infection after another, constant mouth sores, and bloody noses and the pediatrician was unable to determine a cause. "Perhaps this was just a phase and she would outgrow it in time," was what we heard, and because a "doctor" had said it, it must be true. Another 2 years went by and Alyssia became sicker and the infections became more serious, requiring terrifying bone marrows, hospitalizations, surgeries, and more specialists than we care to remember. None of them had any answers. Was it possible that in the entire medical community in the city of Chicago there wasn't a single physician who might diagnose the illness of our daughter had? We had given them 2 1/2 years and subjected Alyssia to so many tests; how much more could we put her through? How much more could we take?

We prayed for an answer because our next step was the Mayo Clinic. Our prayers were answered in the form of Dr. Jong Kwon, who came to Lutheran General Hospital in Park Ridge, ILL, from Sloan-Kettering in New York. Finally, in 1987, we had a diagnosis. Alyssia had Idiopathic Neutropenia, but there was no cure. Hospitalizations for 3 weeks at a time to receive intravenous antibiotics were going to be a way of life. Even though the constant hospitalizations took their toll, we found ourselves being grateful that Alyssia didn't have cancer like so many of the children we became so familiar with during these visits. We also clung to the hope that someone knew more about this disease and we would eventually find out who and where they were.

Doctor Laurence Boxer was that someone. Finding him proved to be a bit of a hunt (he had moved), but thanks to Dr. Kwon, and many phone calls, we caught up with Dr. Boxer at the University of Michigan Hospital. The Spring of 1988 found us in Ann Arbor with Alyssia in hopes that she fit the protocol and would be chosen as a participant to receive a new drug called G-CSF. By the luck of the draw Alyssia was accepted but became ill during the waiting period, and the first two weeks of our 6 week stay had Alyssia in the hospital and me at the Ronald McDonald House. The anxiety and depression of having a sick child was beginning to take its toll on me, especially since my husband and I had found it necessary to divide the time required in Michigan and I found myself alone during this first two weeks. The Ronald McDonald House staff and other parents who found themselves in similar situations certainly helped to make this time easier. Talking to other parents whose children would eventually die, made us see our situation from a totally different perspective. We would eventually be able to take Alyssia home.

Once Alyssia was on the drug and on the road to wellness, my husband Patrick spent the remaining weeks in Michigan. His stay with Alyssia certainly turned out to me much more enjoyable because G-CSF was working and hospital stays were going to be a thing of the past.

And so it has remained. Alyssia has been well for 5 years. She is no longer on a first name basis with hospital staff. Her classmates don't send monthly get-well cards. We no longer panic at every symptom of a possible illness. Sometimes, we even forget that she has an illness and sometimes she forgets too. But we do not take for granted how precious is the life she is able to have because of Amgen and G-CSF.