Tuesday, June 15, 2010

Let's Talk About Ryan


Ryan Paul had a very big week last week starting with Monday night. We got a phone call from PCH at about 7:30pm. They had chimerism results to share with us! Are you ready? I am 98.5% whole blood Ryan (same as last time) and 83.4% T Cells Ryan (8% improved). It was wonderful news. He's got feisty little cells. They are using steroids to calm the graft vs. host down and he is still improving! That stubborn personality is a blessing (in this situation at least).

Tuesday was the second day of the MLB amateur draft. As I've mentioned before, Ryan, was scouted by various teams. I was at Gamie's house making a baseball cake and cupcakes to surprise him when I heard it,"the LA Dodgers select Ryan Christenson, a left handed pitcher, from South Mountain Community College in the seventh round". The feeling of absolute joy and happiness that consumed my body was incredible. I was jumping, crying, screaming, and thanking God. I am so proud of Ryan. The little boy who sat the bench on the team his Dad coached has the opportunity to play professional baseball. "Keep a dream in your pocket and faith in your heart. Anything is possible."Things have been extremely crazy around my house for the past 15 months. My brothers and the entire family have graciously made my health the number one priority. Tuesday was something we all needed. It was hope for the future, reward for Ryan's hard work, and a reminder that things are worth fighting for. The high I felt was not induced by medication, and I was on cloud nine. As a matter of fact; I still am. I am one proud sister.

Well last week had been quite an exciting (and busy) week. I'll save you the boring details of the medication changing throughout the week. We will jump straight to yesterdays labs. Chelsea went to clinic with us. I am officially off of Tacrolimus and I'm starting a new form of anti-rejection. They think I have something called "TAM". That is where the Tacrolimus eats my red blood cells. Then they turn into indirect Bilirubin. Plus, the Tacro is metabolizing my magnesium. (That tacro likes to eat everything I guess). My mag level continues to drop no matter the amount they infuse nightly and is the reason I feel so poorly. So, they decided it would be best to try a new anti-rejection med that has less of a chance of metabolizing the mag and irritating the liver. We still tapered on the steroids; 7.5mg in the am and 5mg in the pm. We are getting there! At this rate we are looking at about four more weeks on the little monsters. We are finally starting to see lower and almost normal blood sugars! It took a lot of playing with the insulin, but we are definitely making strides. I am at an average of 4 pricks and 4 shots a day.

The summer flu is going around. I know that because both Allan and my Dad caught it. I'm hanging at Gamie's for the time being. I showed up at her house yesterday afternoon, smiled, and said "Hi Roomie". Thank you for loving me Gamie; that's all I can say.

Last week was a good week emotionally. My life has revolved around MDS, transplant, and the medical world for so long. I was losing sight of the fact that that is not who I am, but merely what I am dealing with. Last week helped me see that more clearly. There's a teenage girl full of life and personality behind the needles and the mask. Praise God for Ryan, his cells, an improved chimerism, oh the list goes on and on.

10 comments:

  1. Keep it coming Christenson family....

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  2. Good boy Ryan! I am so thankful for you right now! You too are an inspiration and we are so happy you got drafted. I was so glad I could go to clinic :) Those doctors adore you! I am praying by thursday they will lower those steroids to 5 and 5. You will be done soon I can feel it! Go Ryan's cells!!!!! We are neighbors again haha! You are dealing with this so well! I am so proud of you :)
    P.S. good luck being that 3rd leg to help Tyler. I know you just didn't want to tell the doctor it was illegal because she wouldn't let you anymore. hahahaha just kidding...that will be the day when Carolyn Christenson did something illegal!
    I LOVE YOU!!!!!!!

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  3. Yeah for Ryan. I wish our nephew, Mitch Jones was still with the Dodgers. He is with the Atlanta Braves right now. Thanks for all the updates and good news. Keep it coming. Tell momma Ronda hello for us. We love and pray for you.

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  4. Wahoo that is so awesome for Ryan, like father like son:) And so happy about the improved chimerism! I love you so much!!
    Love, Corinne

    p.s. That is the cutest baseball cake and cupcakes I've ever seen, you have got some amazing cooking skills!

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  5. Wahoo that is so awesome for Ryan, like father like son:) And so happy about the improved chimerism! I love you so much!!
    Love Corinne

    P.S. That has to be the cutest baseball cake and cupcakes I've ever seen! You have got some amazing cooking skills!

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  6. Carolyn - I know Ryan from his days at Nebraska, and know a little about your story through him. As I have discovered and read parts of your blog, I am greatly encouraged by your faith and determination in the midst of difficult circumstances. It's no wonder Ryan thinks so highly of you!

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  7. Hooray for Ryan!!!! And for you and your family!!!! Isn't it wonderful to have all those exciting emotions going in and thru out your whole body? We celebrate with you all! I love your quote, "Keep a dream in your pocket and faith in your heart. Anything is possible." I am soooo glad God blessed you with your Gamie just out your back door basically----I know she thoroughly enjoys having her "roomie" show up at any time! Love & Prayers, Kathy & Rexie

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  8. I have a wonderful idea for your next blog, "Let's Talk About Allan"

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  9. hahahahahahaha "not allan" a.k.a ACTUALLY IS ALLAN.... best comment ever. love you cec miss you terribly,im buying a motorcycle so we can take it out as soon as your better. you can drive this time though... haha! xoxo<3

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  10. With God on our side anthing and everything is possible. You are living proof of that, dear Ceci. We are thrilled about Ryan being drafted, about your numbers improving, and REJOICE with you in so many ways. Please feel a HUGE HUG from WA!

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