Back from Pennsylvania, and off to a wedding in Hilton Head. Busy times around here. Jerad and I were lucky to have a weekend to ourselves to see our friends Pat and Kathy get married on the beach. Thanks to Grandma, Aunt Tara and Uncle Bunk, we knew our kids were in good hands. Although Ally did not really want us to go, it turned out she did really great and even spent the night at her Aunt's house in Columbus. This is a huge step for her. She has had so much trouble sleeping over the past couple years that she never wants to be away from her bed or her parents. She spent the night once with her Pa and now this....baby steps in the right direction. Her nurses at the hospital keep trying to convince Ally to go to one of Paul Newman's world famous camps for kids with cancer....to which she adamantly says NO. Maybe someday, though. Maybe.
I have to admit I am getting a bit more nervous as the days click by with no chemo. It has now been 2 weeks. Part of me just wants to run her to the lab and get a blood draw. But that wasn't in the plan and when the feeling comes up I just say a little prayer instead. I keep constantly studying her...is she pale? What is that rash? I feel so guilty for never seeing the paleness right before her original diagnosis, because now looking back at pictures it was very evidently there.
Tomorrow we are doing a 2 hour interview with K99 FM's Nancy Wilson...I was trying to prepare Ally for it. I said "you just have to answer questions about your leukemia and the hospital, etc" So we started talking: The best thing about the hospital: obviously, Dr Broccoli (as we call him). The worst thing: she started remembering the time she had pancreatitis in the middle of the night and begged us to take her there. Pain.
I have failed to mention on here until now....well I actually purposely didn't mention because I don't want to ask anyone to do anything at all for us....but we are walking in the Light the Night walk for LLS on Thursday night (Oct 6). It is again at the Fraze Pavilion at dusk with the lighted balloons. We have had huge teams for the last two years, but this year I focused on the Curesearch Walk instead. (Thank you by the way...we raised almost $7000!) But I love this walk and watching my girl walk and wear her survivor shirt and carry a white balloon. Anyway, several of you that didn't do the Curesearch walk asked me about it. Here is our webpage to sign up:
http://pages.lightthenight.org/soh/Dayton11/JBarnett
No obligation! Or you can probably just show up and look for the orange shirts too! We would be thrilled to have anyone walk with us. Supposed to be a nice night again.
I will continue to pray that many more people get to wear that SURVIVOR shirt including my sweet daughter Ally.
Sunday, October 2, 2011
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Janel, I am the exact same way with Maggie-- checking her color, looking for bumps, rashes, etc. We are 19 months out and it hasn't gotten any easier yet. I now think of myself as crazy because I panic over every little thing.
ReplyDeleteAlso, congratulations on the end of chemo! What a wonderful thing to not have to deal with all the side effects anymore. Only good days ahead!
Whitney