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In late February or early March of 2001, Camille got sick with RSV. She was in the ICU in our local hospital, but after a week, she wasn’t getting any better. Angie and I got to the hospital on a Monday afternoon and she seemed to be worse. After talking with the respiratory therapist, Baahnah decided that Camille needed to be moved to one of the larger children’s hospital. This would have been Kosairs in Louisville or Vanderbilt in Nashville. By the time the doctor had gotten to the hospital to sign the release papers, Camille’s condition had deteriorated. An emergency call was placed to both hospitals to try and get an emergency life flight.
Kosairs responded by immediately dispatching their small medical jet along with two nurses. Upon arriving and taking her vital signs, they immediately induced Camille into a comma. The nurses advised us to take our time and to go home and get clothing and other necessities because we would be in Louisville for several days. This may have been the first time in my life that I felt absolutely helpless as I watched them wheeling Camille away. The two nurses assured as that as bad as things looked, they promised us that Camille would be alive when we got to Kosairs. That three-hour drive was the longest trip I had ever taken. The entire trip we cried, prayed, and tried to encourage one another that God had things in control.
 Well, as the nurses had promised when we arrived, Camille’s condition was critical, but she was alive. The next ten to twelve days were unlike anything I had ever experienced before. Everyday we saw children coming into Kosairs with just about every kind of sickness imaginable. We prayed constantly not only for Camille, but for all the children and families that we were meeting through those terrible circumstances. A couple of days past and Camille was still in the coma. The doctors continued to assure us that she was going to get well. But, one day a doctor came in and said he had noticed the rather large birthmark that Camille had on her backside. He informed us that he had seen this before and it was a good indication that Camille might have a disease that would be worse than the RSV.
I remember sitting there thinking what could be worse than what she was going through now. The doctor advised us to have Camille checked for this disease that he called MAS. He left us some brochures to read when we felt like it. That night Angie and I spent the night at the hospital with Camille. We wanted to give her mom and dad a break as well as let them have some time with the other two siblings. Late that night, I picked up some of the literature and started reading. To say I was in shock about what I was reading would be an understatement.
Precocious puberty, fibrous dysplasia, broken bones, possible blindness, and so many other symptoms that I couldn’t even begin to remember. Today, I can’t remember much else about those next days. I do know that the doctors and nurses at Kosairs kept their promise because eleven days later we got to go home with Camille. As we were traveling the interstate back home, we were rejoicing that all was well. We all vowed that no matter what, we would be there not only for Camille, but for one another as well.
A couple of months later Camille was diagnosed at Vanderbilt with MAS. We knew nothing about the disease and we could not find anybody that did. Fortunately, one day Angie was on the Internet and came across an organization called Magic. We got in contact with one of the directors, Annie Miller, and learned that once a year there was a convention held in Chicago. It was here that families could find information about child growth disorders. We decided that we were all going to attend and see if we could really find a little “Magic.”
Unfortunately, Camille suffered her first break just before the convention. Being in a body cast that encapsulated both legs and continuing up to her rib cage, she couldn’t make the trip. Angie and I decided that we were would still attend and after several conversations with Annie, we made our reservations. We arrived at the Marriott on Thursday afternoon. We went to the window to register and that was when we finally meet Annie face to face. Finally, someone who knew about McCune-Albright was standing before us.
That night, Annie introduced us to other families whom had been or were currently going through the learning curve. Angie and I both felt like we were attending a family reunion. Each person we met felt as if we had a kinship. There was Rich, Russ, Scott, Jeannie, Gina, Dawn, Elizabeth, Connie, Phil, Rob, Andrea, and so many others. We meet some of their children and we quickly felt as if we had been adopted into a much larger family. Over the next couple of days, these mothers and fathers related to us their experiences with MAS. I remember three wise men named Rich, Scott, and Russ encouraging me. They told me to enjoy the good years that Camille would have, because there would be years that would not be so good. How I have found that advice to be so true.
What I do know is that the MAGIC Foundation has been a blessing. It is an excellent source for locating people who know about MAS. Last year we meet Dr. Stanton who performed the surgery on Camille’s legs this past October. Dr. Collins and Dr. Feullian from the NIH have attended the convention each of the three years that we have been there and what a knowledge base they possess. Maybe as important, it is a place to gain support and encouragement for all those that have become like our family. So, I look forward to our annual July pilgrimage to Chicago for our family reunion. Hope to see the old gang there and look forward to meeting others for the first time.
GOD BLESS EACH OF YOU.
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