Wednesday, April 7, 2010

The Meeting & More

Our meeting with Dr. Adams went extremely well. It lasted about two hours. She talked about the medicines I'm on, my broviac, and the plan moving forward. The words that seemed to stick with me the most went something like this, "Carolyn, you are doing extremely well. I am so pleased. But we aren't out of the woods yet." It summed up where I'm at in this point in time. Another chimerism was drawn. We are anxiously waiting for next Tuesday's results. It will alter the path we take moving forward. We are hoping and praying I am 100% Ryan. If I am not at least heading in that direction we will consider other options to help my counts. They say it isn't unusual to do so. But until I get those results I'm not going to worry about it. I'm tired of the what ifs. It's energy I can't afford to waste.

I got permission to start building strength. Thanks to Pro-Advantage I now have five exercises I perform twice daily. Yes; they're small, but still difficult for my fragile body. I'm not going to wake up one day with stamina; no one will. We have to build it. But the thing I'm most excited I got permission for was shopping. Well, not any shopping exactly, but one store. I can go to Anthropologie under the following provisions: I will wear a mask, arrive at the stores opening time, only go to one location, shower when I get home, and not over do it. Woohoo. I shopped. It was wonderful. It felt so normal and felt like I picked up where I left off. The girls who work at the store were so kind and understanding. It was just what I needed. A reminder of what I'm fighting for. It was refreshing.

However; I was declined permission to eat out and get my license. Getting my license isn't a matter of germs, but it comes down to the fact that I'm on medication that can alter the way I act. Driving without someone in the car watching me could be dangerous. And why do I need a license and a car insurance bill if I can't go anywhere? Eating out has to do with germs. You know those signs in restaurant bathrooms that read "Employees must wash hands before returning to work."? Well, let's just hope they're effective. It was disappointing and I was visibly upset. Even though I got great news that I was getting better and I was so blessed to be in the position I was I couldn't force myself to be happy. Sometimes I forget that it isn't the doctors that gave me MDS. They're not just saying "no" because it's shorter than "yes". Honestly it feels that way a lot of the time. Later on I realized that I am getting better . I'm even on the fast track compared to others. And I should be on my knees thanking the One who's making it possible.

That brings me to my next topic; Dylan. It's my hope you'll send lots of positive thoughts and prayers his way. He's a three year old boy who has MDS. You've probably heard my Mom and I talk about him. I had the honor of watching him sing and play at the clinic when he was first diagnosed. Anytime we mention him to a nurse or doctor we hear how "full of spunk" and "strong" this little fella is. Unfortunately; the last we heard, he was still in the PICU on a ventilator. We just celebrated my day one-hundred which happens to be his hundredth day in-patient. His first transplant was unsuccessful and his second match wasn't compatible. He's fighting stage four GVHD. Sadly for him he's a perfect example of the reason I started Ceci's Climb. He needs our love and more importantly our prayers.

I don't know if you've noticed, but I changed the countdown clock. I'm not sure if June 16th, the day it's counting too, is a big day. It's the date I will have been off of Tacro for three months. None of the doctors have told me I'll have more freedoms, but somewhere along the line I heard that in three months the effects would wear off. It would signify a stronger immune system. So, it's certainly important to me. I'll once again be practicing my MLK Jr. speech. "Free at last, God Almighty, I'm free at last." Until then; I'm just going to keep on keeping on. (And praying for that chimerism!! Let's go Ryan.)


  1. Ceci,I haven't talked to you today, but I certainly enjoyed your blog.. I hope you will be over this afternoon. I am getting used to seeing you each day and look forward to it. These words of wisdom are a little lengthy, but I promise to do a short one next time! "I thoroughly believe in a university education for both men and women, but I believe a knowledge of the Bible without a college course is more valuable than a college course without a knowledge of the Bible."

  2. Good news! I love it! Come on Ryan!! Are you gaining up muscle yet? That is exciting maybe ill come over and do a little workout with you! My mom would thank the Lord if they told me I had to wait to get my license! She doesn't trust me all that well. What! Shopping!! Again! Did you buy the whole store and more!!! Dylan sounded like such a fighter :) good for him. Love you!!!

  3. We love reading all the good news. We will include little Dylan in our prayers. Shopping--HOW WONDERFUL! The driver's license and eating out will come sooner than you think. Thanks for sharing so much FAITH, PATIENCE, ENDURANCE, ENCOURAGEMENT. . . . .with us each time you write. You are touching more people that you ever realized!
    Hugs from Richard and Tamara in WA

  4. Well, Ceci, I hope you found out you are 100% Ryan!!! I am so glad Dr Adams was pleased with your progress! And, SHOPPING!!!! Way to go, girl!!!!! And, thanks for the encouragement on excercising---I guess if you can, I can, too.... I hurt for Dylan and his family--we're praying. Much love, Kathy & Rexie