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.