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Friday, February 19, 2016

She's In -- Clinical Trial

We have been trying to get Bethany into a clinical trial for cystic fibrosis since fall. Well, she finally got in and we are so happy. Today was Day 1 for her and it was a long day. Her appointment lasted 10 hours. It really did and that is a long day for a 9 year old. It was long to me!

She was exhausted by the time we left the hospital. She was hungry and asked if I could get her something to eat. So, while we waited for our car, I got her a kid's meal from Wendy's. We got in the car and we had been driving about 5 minutes and I asked her something and she never answered so I asked again. Then I realized she was sound asleep. Exhausted from such a long day.

We go back tomorrow, but it will be a short visit. We think it will be worth the time spent and hopefully this medication will benefit Bethany and other children that have cystic fibrosis -- though we don't even know if she is getting the "real thing".

Though the day was exhausting, Bethany really was a trooper. She has a cough and she could hardly do the spirometer without coughing until she gagged, but she kept on trying and trying as it had to be done. There were several blood draws and, of course, she wasn't thrilled with that, but said nothing while the nurse stuck her -- though she did ask several times how many times were they going to stick her. But, she really did do well considering how long we were there and how many tests they had to do. 

















































































































9 comments:

  1. Such a beautiful little girl. She really is very special, isn't she? I will be praying for you, sweet Bethany. <3 Jo

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  2. So glad you got her into the clinical trial! I had a cousin with cystic fibrosis, and she got into every clinical trial she possibly could, always hoping to be a part of finding that elusive cure :) She did very well her whole life, grew up, married, had a child...all things she was not supposed to do when she was born in the 70s. The prognosis and treatment gets better and better as the years go on, and even though she is no longer with us, we cheer every advancement made in the research of CF! I love to see Bethany thriving and doing so well :)

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    1. So glad your cousin did so well. Always good to hear positive things as it can be a hard road. Bethany has done very well, but there is an awful lot of work involved in her care which I don't think many people know. We are hoping, like your cousin, that this trial may one day be of help to Bethany and others with CF.

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  3. Brave girl! Three cheers for Bethany. I hope any future trial participation will minimize the necessary sticks. Meanwhile, sticks always hurt me less if I pop a piece of hard peppermint candy into my mouth at the critical moment, while focussing intently on my toes - they are the part of my body which is farthest away from the "stick site". Maybe Bethany could see if these tricks work for her, if more sticks are part of the deal. Meanwhile, tell her I think she is doing something very heroic!

    Best wishes,
    Susan in Kentucky
    Cousin to 2 from U.

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    1. She will definitely be getting more sticks so I will suggest some of your "tricks".

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  4. Stopping by to catch up...........finally!! How wonderful Bethany is in our thoughts and prayers as well as your new daughters.Praying this trial will bring a wonderful break through!!
    Things here have been hard, our SP who has lived in our Group Home 27 years had some health scares. But then things worked out we and we were relieved. Until last Friday, she was diagnosed with inoperable brain cancer. She is 60. And we are devastated. I wish it was last Thursday. I can't sleep, and wake up lost.
    ((((HUGS))) to you all!

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    1. How sad. I can imagine how hard it is for you -- especially since she has been with you so long.

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  5. I have been wondering how this is going for Bethany? How long is this trial?
    (((HUGS)))

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    1. The trial is six months long and then I think there is another part to the trial she can try to get into and it is about two years. Thanks for thinking about her.

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