Courage of Another Kind

DSC_0288Here is my courageous daughter. She has endured so much. Through her endurance, she has also developed faith, maturity, responsibility, and a very positive outlook on life. She is amazing.

On Monday, she had a follow-up biopsy to see if the oral steroid treatment helped her rejection. Everything (echo, pressures, numbers, etc.) looked beautiful. We were all happy (including her transplant team) with how good everything “looked”. When the biopsy results came back, however, we discovered that looks can be deceiving, even in this situation. Her mild cellular rejection is exactly the same as last time. (It’s crazy to me how early on, we were sure she was in rejection several times because of all the indicators in her other tests, and after biopsy, we’d see that her heart was always fine. And, now that she seems to be fine and all other indicators are within good ranges, the biopsies show rejection. I guess that just proves how very necessary those invasive biopsies really are.) The transplant team decided we needed to “bring out the big guns” and do six doses of IV steroids. These are administered every 12 hours and take about 15 minutes each. The kicker is that she has to be admitted to the hospital for three days to do them.

Transplant team decided to let us go back home so Sarah could have the opportunity to go to her New Year’s party she had been looking so forward to. They asked us to bring her back on Wednesday (yes, New Year’s Day) to be admitted. Steve drove down yesterday with Sarah and all of her stuff: guitar, games, book, ipod and laptop, favorite pillow and blanket, clothes, and make-up. She checked in last night, and has already had 2 of the 6 doses.

This girl plans to get dressed every morning, including fixing her hair and wearing make-up. She’s planning to make her bed, play some games, watch a movie or two, get in some very-missed sessions with music therapy and Rainbow Kids, have a paper-airplane contest in the hall with Dad, and spread as much sunshine and happiness as she can while she’s there. I’m so proud of her. I’m sure she’s worried about how these high-powered steroids will affect her. I know she’s frustrated that she’s still in rejection and has to be back at the hospital. I’m positive that it was hard when she realized that after getting off two more drugs last week, she’s back on every single one she had after transplant again. But, after a tear or two trickle down her cheek, she puts on her brave face, and looks for something good. The very best thing about this hospitalization is that it should get rid of the rejection. Another good thing is that it happened AFTER Christmas and we got to be home together for the holidays. And yet another good thing is that she gets to have this treatment while she feels good. I’m not sure she’s ever felt good at the hospital. I really wonder if anyone ever has…. We’re also very grateful for the close watch her doctors and nurses keep on her so we can stay on top of these little bumps along the way.

Here are some of the text messages I’ve gotten from her in the last 24 hours… (Notice the 😀 at the end of all of her sentences. For those of you who don’t know, that’s a Sarah smiley.)

Guess what?! …Because we had labs done Monday, Dr. Everitt said no labs…!! 😀

…And each infusion is only about a half hour long!! 😀

Just got disconnected for the day!! 😀

People keep asking my tech and nurse if I get to go home today…. My bed’s made, my room’s clean and sunny, I’m dressed, hair fixed, some makeup, and feeling great! 😀

I hope she and Steve will take some pictures of this amazing new phenomenon at Primary Children’s Hospital called “Healthy Sarah”. I’m sure it’s blown a lot of people away.

~Julia

5 thoughts on “Courage of Another Kind

  1. I feel like I know Sarah just from talking to Steve. What an amazing young woman and what an amazing family she has. My thoughts and prayers are with you.

  2. I am so happy for Sarah and for you as a family! So happy that you were all able to be home for the holiday.
    I love reading your blog! Thanks for the great Christmas card. HAPPY NEW YEAR!!!

  3. Keeping Sarah in our prayers…what an amazing girl and what an amazing family. She looks so good! Glad you were able to all be together for Christmas. Sending love and hugs your way! 🙂

  4. This little Sarah makes my heart smile. What a wonderful daughter you have, Julia. I hope my girls can be even close to her happy spirit and upbeat nature. Thank you so much for sharing that joy that is her, with us!

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