As many of you know, Kayleigh had a visit at the Almost Home Unit today for two scheduled procedures. She had a bone marrow aspiration in which the bone marrow is used for a couple of tests. She also had a lumbar puncture to withdraw some spinal fluid for testing and to inject a chemo treatment within.
Kayleigh once again was a trooper! Her appointment was scheduled for 8:30am, but she wasn't actually taken back for the procedures until noon. We felt so bad for her because she was starving. She wasn't allowed to have anything to eat after midnight. Since she's been on the steroid, she's been eating like crazy, including in the middle of the night. So not having anything after midnight was very difficult for her. This meant that she missed her middle of the night snack, breakfast, morning snack, and lunch was pushed back. I can only imagine how her stomach felt! I'm guessing like a stampede of wild horses!
Kayleigh has to be sedated for these procedures, so she's not completely asleep, but she has no idea what's going on. Jason and I have been in with her for all of her BMA's and LP's so far, so we get to see and hear what's going on. The first couple of times, Kayleigh was dreaming she was in the rain forest and we were animals. She also saw double and triple, and thought she was missing some body parts. Well, she did see multiples today, but had no adventure in the rain forest. Today, she was cooking! She was cooking her "mommy's famous macaroni and cheese", at least that's what she thinks. It was pretty comical, nice to find a little humor in all of this. She was sprinkling cheese with her hand and stirring the macaroni. She said to be sure to scrape the sides of the bowl so the macaroni didn't stick. At one point, she was floating on a spoon boat in a sea of macaroni and cheese. She never remembers any of these stories, but we sure do. :)
Back to her tests, they both went well. We were very pleased when Dr. Dole came in a couple of hours later and shared that they saw no blasts (cancer cells) in the bone marrow they tested at Children's. Some was sent to Miami Valley for further testing and we'll no more about that tomorrow hopefully. He also sent some for genetic testing, in which we won't have results for a couple of weeks. Her blood levels were all about the same as last week, which were good, so no transfusions today. :) Her ANC (immune) level did go down by 1,000 but is still in a good range. We're very happy with these results so far and hope and pray the news continues to be good.
As for Kayleigh now, she's having quite a bit of back pain, I'm guessing from the LP. Her stomach's a little upset, but could be from all the things she managed to eat for the remainder of the day. Many of you have never seen Kayleigh and many of you haven't seen her in a long time. She's definitely gone from a very petite little girl to an extremely bloated young lady. It's hard to believe that in just three weeks time, she's gained almost 13 pounds. All of her weight is in her tummy and cheeks. Today is day 28 of her treatment, the last day that she had to take her steroid, at least for this phase. The doctor told us that her appetite should decrease and her swelling should go down in the next couple of weeks. He also said she may get to the point where she doesn't want to eat for a few days. I guess she's stored up enough energy for that, but I worry about her not wanting to eat for longer than that. We're just going to have to continue to take each day one step at a time.
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