22 December 2009

For the last 4 years, 4 months and 4 days our sweet Reagan Elizabeth has had a tumor growing in her left ear.

I obscurely referred to the congenital cholesteatoma here and have been meaning to explain that post, but have had trouble putting this whole thing into words. I called a few people (grandparents, of course, and some prayer warriors) on the day we found out. Just a few days ago, I finally told other friends that I hadn't talked to in way too long. Emailing them to say, "Hey, it doesn't seem like I care much about you since I haven't emailed in way too long, but here's what's going on with me..." was hard and a good reminder to take the time to stay in touch better.

The surgery is scheduled for December 29th. Our doctor is pretty certain it will be an "easy" removal since the tumor has remained encapsulated and, even though it is congenital, it was caught early. We are thankful she'll have a nice Christmas before her surgery.

Are you wondering how it was discovered? I'll tell you. On the morning of Reagan's preschool Christmas program she started complaining that her ear hurt. After her nap, she mentioned it again, so I called our pediatrician (who is a wonderful, smart doctor) to make an appointment for the next morning. She wasn't complaining that much, so I wasn't sure she had an ear infection and knew I didn't want to pay for a sick visit just to hear she was perfectly well. So, I figured I'd put her to bed without any Tylenol and see how she slept. She slept well, never waking in pain. The next morning, I called and canceled her appointment. Soon after, I talked to Bryan, who was in Houston and knew about the appointment, and told him she was fine and I'd canceled the appointment. He wisely reminded me Libby doesn't complain unless something is really wrong. Even after his advice and knowing she has a high pain-tolerance, I decided I would wait and take her in the next day, if she complained any more.

We got ready and headed for the door. The van needed an inspection. As I grabbed Levi's bag and watched my kids open the shared door between the laundry room and garage, I was stopped dead in my tracks. I knew I could not leave the house without calling the pediatrician's office again and making another appointment. It wasn't a nagging feeling or a questioning feeling. It was without a doubt a hit-me-over-the-head-so-I-would-stop-thinking-about-what-I-wanted-to-do feeling sent from God. You see, I had a hair appointment that morning and by that time there was no way I would have time to get my car inspected (and that was way over due), take Libs to the doctor and get my hair cut. Without really understanding why I was doing it, I stopped the kids from leaving the house and called the doctor. Then I called and canceled my hair appointment.

While we waited for my car to be inspected, I repeatedly asked Libby if her ear hurt. She would always answer yes, but not very convincingly. Still, I knew I must take her to the doctor.

I knew something was up after the doctor continued to look in her "hurt" ear for more than 30 seconds without saying a word. My first thought was, "Great, she has a tiny Polly Pocket shoe stuck in her ear and he's trying to decide how he'll remove it!" He looked in her other ear, instantly proclaiming it "just fine" and then he went back to the first one, saying he'd like to blow some air into it. After that, Dr. Schwartz told us the nurse would be in to give Reagan a hearing test and he left the room. That was the first inclination I had that something more serious than a toy was causing a problem in my daughter's ear.

Even after Dr. Schwartz told me Reagan failed her hearing test and he was pretty sure she had a cholesteatoma, I remained optimistic. I had never heard the word cholesteatoma and, honestly, I forgot what he termed her condition a few minutes after he'd uttered it. He told us we'd need to see an ENT and gave us a recommendation. When he mentioned what she had was a tumor, assuring me it was not cancer, my anxiety began to rise. By the time we were in the car, I was on the phone with Bryan trying to pronounce "cholesteatoma" and crying. And, by naptime that day, I was a wreck. Beyond all reason, I looked online. After reading all about other peoples' nightmares with, what I later found out where acquired (not congenital, which is what Libby has) cholesteatomas, I was a mess. I called Bryan to tell him not to look online. I was too late. He spent three days in Houston working during the day and searching the internet at night. I spent three days the way I normally do with the addition of doctors appointments each of those days.

We met Dr. Ehmer the next day and almost immediately he put me at ease. After two seconds of looking in Libby's ear, he confirmed she had a congenital cholesteatoma and that it looked as if Dr. Schwartz had caught it very early. He gave me a million reasons why a congenital cholesteatoma is the better one to have, if you have to have one.
Bryan caught an early flight home on Friday afternoon and was so relieved to see his sweet girl. He still hasn't met Dr. Ehmer, trusting my judgement and our Lord completely.

We'll have a nice Christmas and a few days after, we'll take our precious child in to have the tumor removed. She'll have frequent check-ups for a while and you better believe I'm turning into one of those moms who drives her pediatrician nuts! This type of cholesteatoma is extremely rare. We have no reason to believe she will face any other problems from them or that either of our other children have them. Of course, I will, at some point, let everyone know how the surgery goes and how Libby does. If I'm not around much it's because I'm soaking up every second of this week with the kids before we have a more subdued week next.
Merry Christmas! May the Lord bless you abunduntly with His peace, love and joy!