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Friday, January 22, 2010

Thursday at St. Judes

This is actually an email sent from Jenn last night...

"Started the day early only to get halfway through the prep for the MRI and find out they had not identified the material used in the clips placed in Avery's head during her initial resection surgery....because they were not certain what type was used, St judes was unable to do the MRI -- very cautious on this side. So the whole morning was shot and Avery had to wake up from the sedation with no results. I got a lesson in flushing and changing her lines -- the St Judes way....needless to say very different from they way it was taught to us in KC. Tomorrow I take a test on it...then we take a test later on changing the dressing on her boob tube. Who knew I was in nursing school?

Talked with the Dr and he said their pathologist report came back....they found that the tumor is not Anaplastic....according to the path report from KC it was. Bottom line -- not as aggressive as they had thought. Good for us. We will have a full day tomorrow with MRI and other tests and we should go in for inpatient starting tomorrow. The plan is to give her fluids all night Friday followed by her first round of Chemo on Sat. She will then be in the hospital until Tuesday. She will be discharged for a few days and then be readmitted on Friday again for days 8-12, different drugs this time. Then she will have periodic chemo through day 15 that is pushed daily through a syringe rather than an IV.

That's about it for today.....hopefully the MRI shows a complete resection and no other issues.....keep em crossed!!


So, please pray that the MRI shows that KC did, in fact, get all of the tumor!

Now that they are getting settled in and have a better idea of what the treatment protocol will be, it's becoming clear that Jenn is going to need some help for 3-5 day blocks of time after the 15th of February when Jeremy has to come back to Kansas City to work. Caring for Avery is a 2 person job right now, and on top of that, Jenn is just really going to need someone to lean on when Jeremy can't be there with them. The plan is to arrange a schedule of people to be there with them for these blocks of time from Mid-February through August when they get to come home to Kansas City. We will have a better understanding of exactly what the need will be once Avery has gone through a couple of chemo treatments, but we would at least like to start getting an idea of how many people will be able to go and what times would be best for those people. Jenn's mom, Kristie, is organizing this, so please email her at or and let her know when you might be able to go.

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