Wednesday, April 14, 2010

Searching...for so many things.

This is me, last March, throwing away my Tacro.

As I mentioned before; last weekend had been a hard one. Initially I thought my busy weeks had started to catch up with me. I soon found out Graft vs. Host is acting up. Which technically; we've been asking for. We want Ryan to fight MDS. I got news that Dylan had passed away on Friday morning. It's a harsh and tragic ending to this journey that so many families have to face. That same evening the Chimerism results came in. Both lines were up. The doctors are so pleased. We all needed good news. We needed to hear that MDS is indeed losing. Whole blood is 92% and T Cells were 84%. Isn't that awesome? We couldn't ask for better news. Honestly; it is such a blessing. When I say, "Go"; you say, "Ryan". "Go Ryan!" As we deal with side effects we realize that the Chimerism was the test we really needed to improve and GVHD will be manageable.

Although it provides comfort mentally; it doesn't seem to ease the physical burden. You can see the Graft vs. Host acting up in three different ways: skin, liver, and stomach. I have red, warm skin, elevated liver functions, and an upset stomach. I have headaches that affect my vision, dry skin and throat, I'm extremely tired, itchy, nauseated, and sensitive to smell. All of these could be symptoms of a)GVHD or b)an infection. They tested for infection on Tuesday and the results came back clear. Plus, all of my counts are holding steady. Today, after they decided a liver biopsy could be more harmful than helpful, they started me on high doses of steroids and Tacrolimus. I'm obviously not thrilled about the addition of meds. The plan is to hit hard with steroids at first and remove them quickly. The goal is to help my liver, but minimize side affects. My family has been warned that it will make me irritable and snappy, constantly hungry, and potentially puffy. Now they're really excited. Basically, it has similar side effects of recreational drugs. I am so thankful to have been able to avoid steroids for this long. But it's just beyond frustrating. I could see the doctors displeasure as she realized I quickly caught on to what adding these medications entails. It means losing the privileges I had just recently gained. I held back tears and reinforced myself saying, "It's just a step backward. I'll get through it." I guess I've come to the realization that life is hard. Extremely hard at times. My Mom is shocked its taken me this long to find that out. Obviously; I knew it was hard. But when you are reminded of it daily, and it's your life; it's nearly impossible to avoid the reality.

To be honest; lately, I've chosen to ignore text messages, facebook, and talking to people. Sometimes I find it easier to do so. It hurts to see what your missing, but it also shows that it's coming soon and knowing that is imperative for me. I didn't do anything until Sunday night when Ryan took me to a drive-in movie. I really enjoyed it. It was the new one with Miley Cyrus. She goes off on summer vacation and meets a boy. It's about the love shared between both a father and daughter and a boy and a girl. One of these days it'll be me laying on that beach. And one of these days I'll be standing next to Miley Cyrus while she rants and raves about Ceci's Climb.

This is me today; looking for my Tacro :)

7 comments:

  1. First of all...I'm so sorry to hear about your friend Dylan. I won't even try to pretend what your world is like Ceci. You have been so strong and positive throughout your Climb. Its only natural I think to be tired of the steps backward even if they are not often. I know that you are anxious to get out and do all of the things that you are unable to...just be 16. It WILL come (not soon enough I'm sure) but it will come. Look back at where you were and how far you've come. You have a lot of great things ahead of you and they will come. You are a bright star that will always find a way to shine through, no matter the clouds. Keep the faith Beautiful and it will come. Love, Kindra

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  2. Oh, Ceci, how you continue to amaze me! You are such a strong young lady.......most people would not be able to always get back to the positive, but you do. Thanks for sharing your pain and sadness with us also.....I grieve with you over Dylan. Much love and prayers, Kathy & Rexie

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  3. Once again, Ceci, you are such an inspiration! I don't know how you do what you do. I'm almost 10 years older than you, and I know that I could not have handled this situation as amazingly as you have. So just know, that even though you're young, you never know who you're being a role model for! On a lighter note, I cannot wait to see "The Last Song"! I absolutely loved the book. But out here in Northwestern Oklahoma, we have to wait a little longer for movies to get here;) Please know that I am constantly praying for you--when I'm getting ready in the morning, when my students are doing their math lesson, when I'm working out, watching TV, etc. You are always in my thoughts. Love ya, Jena

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  4. Uncle Vaden & GammieApril 15, 2010 at 2:17 PM

    Ceci: This is from Gammie and Uncle Vaden. When we were out walking last evening and saw you and your Mom coming home from getting medicine, we took the opportunity to catch up with what had taken place in your busy day yesterday. It was so good to see you! We hope you are having a good day and that we will catch up with you tonight. Thanks for all of the info in the blog. We love you!!!!!!

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  5. Thanks Ceci for sharing the good, the difficult, the hard, and the challenging. We are so sad to hear about your little friend Dylan. Because of him, all of us have been touched and you will fight harder in your climb. His memory will not be lost. One of the favorite pictures in my home is a picture of Jesus Christ. The title says, "I never promised you it would be easy; only worth it." You truly are enforcing that in all of our minds. Because of you we pray harder. Because of you we have felt truer love. Because of you we strive to be kinder to others. Thanks for being a true disciple of Christ. Hugs from WA!

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  6. Trust me your not missing much! Go Ryan! I believe in you! Like the little engine that could would say...I think I can I think I can... I know you can do this girly! We will keep faith if you keep on climbing (: Usually you put a smiley the other way but I switched up. I LOVE YOU!

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  7. The McCord FamilyApril 19, 2010 at 6:44 PM

    Well Ceci....what to say...what to do??? Most importantly I say that without fail, you share the things that are dear to you, good or bad! That is so important!!! When I think of all you are going through, I also think of everyone who loves and cares about you, and how so many of us look forward to your blogs or texts and such, but we know it's hard on you. Please know we certainly understand the dilemma you are in by sometimes not wanting to communicate, but sister, let me tell you, I know it helps us, and even after the bad days, I know it helps you too!!! So keep on keepin on and know that as you said, there are many things to look forward to, but the road always seems long and the journey difficult. I have no doubt your journey has been more difficult than any of us can imagine, but I know that you will come through and shine brighter than us all!!! As to what to do.....keep getting better, become one with Ryan(hmmm, or at least become Ryan on the inside of that marrow! haha), keep the faith, and keep climbing Ceci!! We love you!!
    The McCord Family

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