Wednesday, September 30, 2009

Light the Night Eve

I cannot believe our big day is tomorrow. I am nervous, excited, emotional, scattered, you name it. Tonight I spent some time with Kate, my old college roommate from Miami, and her husband Matt. They travelled six hours to be here for our girl Ally. My other college roommates are also coming in...2 from Michigan, and 1 from Wisconsin. I have met a lot of wonderful friends in my life, and most of them will be marching right behind us tomorrow night. I am lucky.

So I will see everyone tomorrow night. I did forget to mention last night, but they are going to have a booth set up to do bone marrow screenings. This is not hard! I think they basically swab the inside of your mouth with a q-tip and send it away for DNA work. I would really appreciate if anyone would be willing to do this. I am not sure if Ally will have to go the bone marrow transplant route, but it is always a possibility and I would like to be prepared if at all possible. You never know if you could be a match for Ally, or even some other child in need. One of the fellow families from the hospital, Lincoln (the one who shared the Lemonade Stand profits with Ally) has just relapsed back into his leukemia. He is only 9 months old. Please keep him in your prayers and also look for them to be walking tomorrow night. He will be in the hospital with Ally getting chemo on Friday.

So you heard it right, Ally has passed her "ANC count" and will have her port accessed at 3:30 tomorrow afternoon. Just in time to head over to the walk. When she arrives back home, we will hook her back pack of fluids up to her port and have another night of no sleeping! She is admitted on Friday morning for three to four days of more chemo.

We have made some further progress on getting those MRD results from Johns Hopkins. One of Ally's doctors is going to try to call and get the info for us. We also found out that the test Miami Valley did a couple weeks back is now more detailed than the one they ran back in June. And they still found zero leukemia cells. So I think that is a very good thing. I just keep staying on top of everybody until I get her results. Just as is the case with almost everything, it is true that you have to fight sometimes even for your own healthcare. And I am always willing to take on that challenge.

See you at the walk!!! If anyone is willing to take some cool pictures and send them to me, I would be very appreciative!

5 comments:

  1. Terri Barnett ShumakerOctober 1, 2009 at 6:40 AM

    Sorry that I won't be there tonight but I am wearing my Ally's Army Tshirt to support the cause today back here in Perry County. I know that it will be a great night and can't wait to see pictures.
    We will be thinking of you all during the next 4 days of the hospital stay too.

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  2. We are honored to be there with you and can't wait to meet the ARMY of people who will be standing behind Ally. Prayers that money raised might some day stop this disease so others don't have to go through this journey. Extra prayers for Lincoln too...

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  3. Janel,
    I hope tonight can be a celebration, too. You have accomplished so much already. So glad Ally's counts are good. Here's to a great night tonight, a quick few days of chemo, and Lincoln's health.

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  4. We are really looking forward to tonight Janel. It is a beautiful day for a beautiful cause for your beautiful girl. Hope maybe I can "meet" you tonight but if not, know that we are behind you, having fun and proud to walk to help find a cure.
    By the way, if there are readers that are interested in registering for the National Marrow Registry but will not be there tonight, they can visit this site and they will send you a kit in the mail
    www.marrow.org

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  5. Have been thinking about you guys ALL WEEK and will continue to do so tonight. Can't wait to hear how it goes! Blessings to Ally's entire Army...near and far!

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