Monday, July 26, 2010

GI Consult

As I had somewhat prepared myself for, we got little answers today on Ally's liver numbers. We met with Dr Muniyappa, from Gastroenterology at Children's. She examined Ally, but you can't really tell anything by looking at her. She remarked that she thought Ally looked healthy. She wanted some time to review Ally's chart...and the chart is literally about five inches thick, so I think it will take her some time. She wants to check the liver numbers again on Wednesday. She was also going to run a few other tests looking for markers on a few things. She was going to discuss the case with her partner.

She thought the numbers could be caused by a virus, but then they should be going down (which they haven't yet). She was interested in looking at Ally's meds, because she said meds can cause this condition. I had read that methotrexate can do some of this, and that is the chemo she is currently taking. She mentioned a disease called HLH, which I didn't want to hear because another leukemia patient we know is currently dealing with this...and it is not curable. But she said she really didn't think that could be it because Ally is not appearing sick/symptomatic in any way.
So again, not too many answers until the labs are drawn on Wednesday again. We just have to pray those numbers go down. If they continue to go up, our next step is a liver biopsy. And I really really don't want to go that route. She has been through enough already.

Ally is on her fourth day of five of the monthly steroids. This month the steroids do seem to be making her more subdued. She gets very quiet and reclusive. She is not as bad as she was with the Decadron, but we are seeing some of the effects. Her sleeping and eating patterns are shifting also.
Thank you to the army for the prayers. Thank you to all who are organizing a concert for this coming Saturday night....the band is called Live Bait and they are playing a benefit near Jerad's hometown with the proceeds going to LLS in Ally's Army's name. They have been working on this project for nearly a year!

I also wanted to share some pictures from a fun event that we were invited to courtesy of Special Wish Foundation. They invited all the wish kids to come out for a private viewing of the Blue Angels as they practiced their routine for the Dayton Air Show. After almost an hour long performance, (breathtaking really) they got out of their jets and walked over to the kids and signed autographs, did pictures etc. Thank you so much for including us in this annual event and we will certainly be there every year that we can!

Just like Top Gun
Ally is wearing the light blue hat towards the front right...all the wish kids here.

Jerad took some great shots. He liked the show more than anybody!


3 comments:

  1. You've got my prayers for those liver numbers. Love the blue angels pics, but I'm such an air show junkie. Thanks for the call, I'm not even sure how I missed it, but I will be in touch today. Love you!

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  2. For what it is worth, Maggie's liver numbers got very close to where it sounds like Ally's are. It was pretty close to the beginning of her maintenance time, too. I think part of it, for Maggie, was to get the doses of the 6MP and methotrexate to the right spot. I hope that's what is going on with Ally.

    Andy

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  3. It looks like you've got great support and that event looks like a lot of fun! Thanks for coming to visit my blog too!

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