Wednesday, October 26, 2011

Just another visit to the doctor

Tucker has bad skin.

Since he was born, Tucker has been plagued with what we've called eczema. All by itself, it sounds minor. But it's not minor.

He has spent his entire life covered in sores. His arms and legs, specifically, have been completely healed only once in his life, and that was for about two weeks last spring when he took a powerful anti-rejection medication that is usually given to organ transplant patients. We knew at the time it was a one time deal  -- he could never take it again. Other than those two weeks, he itches and scabs and bleeds and scratches. His sores are innumerable, and he has truly never known relief from them. This is kind of a blessing, actually. He doesn't know what it's like to not itch and hurt, and so he lives. He plays baseball and swims in the summer and goes to school and bleeds and scratches and it's his life.

We've seen dermatologists and allergists and the like, and we've "controlled" it sometimes and it's been infected and then it's better but just gross and painful and we continue on.

In the past three months, however, I've decided that I am a horrible mother. I think I realized this because he's started a new school, and I get to be there with him every day. It occurred to me that these new friends and new people at this new school know Tucker first as the kid with the sores. I knew they asked him about it. They asked me, too, "why does Tucker have sores all over him?" and it broke my heart.  I began to see him going into intermediate school and middle school and high school and having to first overcome his skin before he could make his mark in his new place. The thought still gives me this horrible feeling deep in my gut.

So I took him to the doctor, like we always do when the skin gets increasingly worse instead of staying just plain awful. He took an antibiotic for staph (as we often do because he has open wounds all over his body), and we hoped for the best. Two weeks later I took him again because he still seemed to be getting worse. Our awesome pediatrician, who always looks for new ways to help Tucker, put him on a different antibiotic and mentioned that there is a pediatric dermatologist in Round Rock that he'd be glad to send us to if we were up for trying something new yet again.

I made an appointment for early November, the soonest they could see him, but his skin continued to worsen. Finally I called the doctor, desperate for an earlier appointment, and they agreed to fit me in the next day provided that I changed to a different doctor in the practice. It wasn't what I wanted, but it was something, so I took the appointment.

Tucker and I made the hour and forty five minute drive and decided to have lunch before the appointment. Tucker chose a place called "Z Pizza," and it turned out to be the most hilarious place to have lunch. This was because Tucker spoke with an Italian accent the whole time, exchanged all the's for zee's. "Z Pizza at Zhis place is Zee best pizza I've ever had!" He was cracking himself up.

Off we went to the doctor, and when we arrived we learned that Dr. Tee, the pediatric dermatologist we wanted to see, found out we were coming and rearranged his entire schedule so he could see us. The nurse ushered us to a room and made Tucker don his very first doctor's office gown, booty hanging out in the back and all. Doctors don't usually make kids strip down and put on a gown, so it was pretty funny to see my eight year old's face when the nurse said those classic words: Take everything off and put on this gown, open in the back.

Dr. Tee was amazing. He studied Tucker, asked tons of questions, and really paid attention to us. After a few minutes he offered some theories and began explaining the tests he wanted to run.

There are moments in life that stop your heart. When the world around you keeps moving and panic rises in your throat and, just for that second, you can't breathe. You want to scream for time to stop and back up and I can't do this and no thank you and you must be wrong and this isn't really happening.

I learned this week that the word "biopsy" has that kind of power.

As the moment passed, all I could think was that I could feel my face. I felt it change into the face of one hiding what was really happening, one who appeared brave and strong and positive and altogether unaffected when what I really wanted was to cry. I knew Tucker was watching me, and I couldn't hear what the doctor was saying because I was so focused on what to do with my damn face.

I knew he wasn't doing a biopsy because he thought Tucker had cancer, but it didn't matter. It was like this thing, this giant monster of Tucker's skin that loomed over every day of his life was coming out of hiding and facing us. I realized that for so long I'd feared that what causes Tucker's skin to break out is something devastating, terrible. Something that would take him from me. The biopsy was going to show me how big the monster really was, and I don't think I was ready at that moment to know the answer. We had worked so hard to keep the monster stuffed in a little box, and I knew that we would never be able to put it back in. It was terrifying.

Long story short - okay, long story less long - the doctor did two 3 millimeter punch biopsies in Tucker's right arm, and then we went to the lab where they drew four vials of blood (he almost passed out). I smiled, I joked, I made a bet with Tucker about how many homers Pujols would hit in the World Series, and Tucker never once cried. He tolerated all of this a million times better than I ever expected. We have since joked that Trey and Keaton should never again send the babies to the doctor alone, but the babies did okay.

I must say here that I realize people all over the world and here in our own back yard have real problems. There are incurable diseases and debilitating conditions that make Tucker's skin problems look minor. I am well aware that in the big scheme of things, this is not the worst. But we just can't keep watching him suffer if we can help it.

Today the incredible Dr. Tee called with results. Tucker does not have celiac disease (that was a theory), and we now have documented evidence that he is one incredibly healthy eight year old who happens to bleed all over the place. His liver and kidneys and electrolytes and everything else they can test with your blood are all normal.

He does, however, have both eczema and psoriasis, an overlay that occurs very rarely. It seems people are supposed to get one or the other, and my little over achiever has managed to have severe cases of both.

But Dr. Tee thinks he can help. He wants to start Tucker on a new oral medication. It has lots of scary side effects, as do all medicines, but Dr. Tee's professional opinion is that the benefits will far outweigh the risks. For the first time in his life, Tucker could have complete relief. I'm so excited I can hardly stand it, but I'm also a little afraid to be too hopeful. Either way, the monster is a great deal smaller.

Tonight I asked Tucker what he thought it would be like to not itch all the time. He laughed a little and said, "I guess it would be like being a normal kid." 

"Oh, honey," I told him, "You are way too special to ever be a normal kid."

I'm pretty sure he made a face at me.

Then I told him when his skin got better, I was going to buy him new sheets. I think he was genuinely excited when he said, "And they won't get bloodstains on them!"

I know of no better way to end this post than to let Trey end it for me. As he told my mom in our latest facebook message conversation: "It seems like there are some risks with taking the medicine, but they think the benefits outweigh the risks. I would rather take a calculated risk for myself then to decide to take a calculated risk for my kid. I'll try not to worry....God always takes care of us and there is no reason to think he won't continue."

Tuesday, October 4, 2011

Keaton's First T-Ball Game

I haven't blogged in over a month. I've formulated several posts in my head, but none of them have actually made it out onto the keyboard. Perhaps they'll come soon.

Part of my trepidation is that the post rattling around in my head is regarding the differences and similarities between high school and elementary school. I'm very concerned that my people on both ends of the spectrum will interpret something I have to say as an implication that one is easier than the other, and that is most certainly not the case. Someone I respect more than just about anyone in my professional life told me from the beginning (I'm paraphrasing here) that people think elementary is easy, but it's not easy, just different. She, too, worked in both elementary and secondary schools, and now that I'm six weeks in I know exactly what she meant.

So that post will someday be posted, but for now I'll share about one of my favorite subjects in the world. Keaton.

It's good to be Keaton. It's fun and exciting and an all around good time just to BE Keaton Hickman. After six years of his life, I've realized that the rest of us in the world just don't enjoy ourselves enough.

Tonight he had his first t-ball game, and he couldn't have been more excited. He was serious business as a player -- he made sure he wore his batting gloves and showed off his swagger. You could just see the fun seeping off of him while he was on the field.

Now, in t-ball, the kid hits the ball off of the tee. The opposing team attempts to field said ball, and the player runs to first base. As the next batter hits the ball, all of the runners advance one base, and this continues throughout the entire batting order. Every great once in a while the defense gets an out, and the out player takes a seat on the bench, hopefully without crying. Finally, when the last batter hits the ball, all of the runners run through to home to finish out the inning.

Keaton was the last batter.

Here's how he told the story of his game to several people after it was over.

"I hit two home runs!  One time, I was running, and the player got in my way, but I was running so fast that he got scared and moved and then I scored a home run. I scared him because I was so fast!  The other time, the score was four to four and the pitcher was at home plate, and he had the ball, and I ran so fast to him, and when I got to home plate I just jumped right over him. The coach said I was safe. I JUMPED over him and scored another home run. It was awesome."

In reality, I'm pretty sure the score was like 30 to 30 because virtually every kid rounded the bases, and Keaton did run all the way through THREE times because there were three innings and he was the last batter. (I'm not sure why he didn't include the third one in his home run count.) But also, in reality, on the last play of the game the pitcher was waiting for Keaton on home plate with the ball, and Keaton did his level best to leap over the player's head so that he could be safe. Both boys ended up on the ground, and Keaton earned his final imaginary home run of the night.

It's fun to be Keaton Hickman.