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.
