Wednesday, January 13, 2010

A Little Bit of Everything

Woah. It's been crazy. I feel so busy. Trying to stay rested yet active is more difficult than I imagined.

Thank you for all of the support. There's been an outpour of love. I got to watch Grandpa's funeral (live) online thanks t0 Sun Valley Church. It was almost like sitting in the back row. It was an absolutely beautiful service. Grandpa's heart of gold and love for God were made clear. I am so thankful and happy I got to be a part of it. To anyone who was a part of the remarkable celebration of his life thank you again for your generosity. Happy 77th birthday GP.

The doctors say everything is going extremely well. It's so exciting to hear yet almost scary in a way. There have been small rashes found on my body that come and go (and itch). They say it is a "good rash". I've never considered a rash a good thing. After you have a transplant you want to see small signs of graft vs. host disease. The reasoning behind it is that we want Ryan's cells to fight against the MDS. We do not want it to come back. So basically the rashes we are seeing are signs that Ryan's cells are indeed moving in.

Recently; I've become restless and so ready to get home. After they started taking me off certain medicine it was a mental struggle. Apparently some of the meds can mess with your head while being removed. The combination of a stressful couple of weeks, the medicine being removed, and being cooped up seemed to hit me hard. Thankfully; it's passing. The doctors say it's a good sign. Dr. Adams said that it tells her I am feeling better.

Hot, cold, hot, cold, hot, and cold. Both the room and my temperature changes frequently. I'm always adding and shedding clothing. My new favorite accessory, hats, keep my head warm.

I seem to get better sleep during the day with less interruptions. They fear I'll mix my nights and days up. They say it happens to most of the transplant kids. However; I certainly understand how. Being woken up at 4am for labs, 5am for vitals, 6am for weigh in, and 7am for shift change seems to do the trick. However; shhh don't tell, but we've talked one of the nurses into doing 3/4 things at one time. It makes the nights easier to sleep through.

I have some big news to share. I am OFFICIALLY ENGRAFTED as of January 10, 2010. My ANC was above 500 for three days in a row which meets the qualifications. Now, we hope and pray for no infections, fever, or significant graft vs. host disease. It's a big step towards moving home.

Speaking of home, we have a tentative release date!! I cannot tell you how excited I am. They are planning to release me on Monday, the 18th. That is less than 5 days away. I miss my bed, Tylie, and the peace and quiet. I have to admit I'm going a little (or a lot) stir crazy. Although all of the planning is taking place and we're on track there are a few more steps we have to take to go home. I have to be eating and drinking enough, all medication has to be given by mouth. I am not taking that pole home. That's for sure! For now I am only on two new pills.

Time to go to bed. Sweet dreams. So thankful for the blessings we've received this past month!


  1. Oh, Ceci! What a JOY to read your posts. We wish we could have been to the funeral, but grateful through modern miracles that you were able to participate. What good news about your numbers and a RELEASE DATE! Wow. . . . .prayers, prayers, and more prayers! God's love is being manifest through YOU and YOU are touching so many of us! Rest, rest, rest. . . .we know the climb is hard, but you are doing exceptionally well!

  2. A release date!? I had no idea that you would be able to go home that soon! That is fabulous! I can only imagine the little things that you miss at home. I think that will help your Climb even more being there in your own bed where you can rest more. You are my inspiration for any struggles that may come my way. I admire your courage and faith so very much. I will continue to pray for you and am thrilled to hear your ANC is going up. You're always in my thoughts. Love, Kindra

  3. Ceci,

    Congratulations on being OFFICIALLY ENGRAFTED and heading home on the 18th!!!!

    Wonderfull, Wonderfull News!!!!!!

    Thank God!

    Gary Lynch

  4. Heather (Hook) FietzeJanuary 14, 2010 at 7:30 AM

    I would have never guessed those nurses keep you up at night by the picture :o). You look beautiful! Such exciting news that you will be going home soon!

  5. Ceci! This is fabulous news!! I'm so happy things are going like they are supposed to and that you will be going home soon! God IS good, isn't he?! I'll continue praying that everything keeps going well, and once again, you look beautiful in your picture! :)
    Love ya girl,
    Jena Belle

  6. I was thrilled to see a post from you. Been a little worried. I thought no news may be bad news, so it was great to see your latest post. You don't know me. I am a fellow MDS patient in the Chicago area. Don't slack off. Don't let your guard down. Keep doing what your docs and nurses recommend. I am expecting your complete recovery. Wishing you all the best. Glenn

  7. Hooray for Ryan's cells!!! You have such a wonderful family and also such a wonderful support group of friends----we enjoyed meeting them so much. Rexie even got to hug one of them since he couldn't hug you. She was so sweet and I know you feel so blessed. You did such a good job with what you wrote for Ray Bob's funeral---I'm glad you got to be a part of his special service. Oh, your hat looks really cute but you also look gorgeous without it!!! Keep climbing--we'll keep praying. Love, Kathy & Rexie

  8. Yay for being OFFICIALLY ENGRAFTED!! We love love you so dearly much and are so glad to hear those counts are going up! Rebellious nurses are the best!
    Love, Karissa and Corinne

    P.S. Your beanie is the cutest.