Monday, June 24, 2013

Jane update:
While on our way to Riley Children’s Hospital for Jane’s MRI this morning we saw the gorgeous super-moon still in the sky even as the sun was rising.  Jane is such a brave little girl—met six different hospital staff and was examined by two different doctors all within about an hour of waking up.  Her patience reached its limit when she was asked to change into the hospital gown (the nurse relented), but she didn’t shed a tear.

After the test Jane came out of anesthesia more slowly today than usual.  Even three hours after the procedure she still didn’t want to sit up, and when she did she threw up!  Apparently (I learned later) she's been given IV Zofran, an anti-nausea medicine, preventatively in the past, but this anesthesiologist didn't give it :(  We’ve heard that back at home Yale has an MRI simulator for kids to practice lying still in so they don’t have to go to sleep for studies.  Usually it’s for older kids, but we might have to look into it for Jane—this anesthesia thing is a drag.

In the end, relatively good news!  Jane's tumor has "only" grown 10% since last visit, so it is actually considered "stable".  We’ve been told Gleevec can take as little as 4 months or as long as 8-12 months to take effect, so we can still be hopeful.  I am actually quite pleased--I was convinced we were going to find the tumor had grown more than 20%, in which case we would not longer have qualified for the study.  (Seems crazy that we consider it "good" even though the tumor grew...)  As it is, we'll continue Gleevec for now, and return to Indianapolis again in 6 months.

Back at the hotel this evening we celebrated.  Jane played a bit with her new stuffed animal, a kitty we named Marshmallow.  Even before the trip she had told me she wanted a kitty stuffed animal from the gift shop after her MRI :)  We bought little presents for her brother and sister today, too.  Had a swim in the hotel pool then treated ourselves to the Steak 'n Shake, Indianapolis!  Jane was one hungry little girl—she devoured her dinner and proclaimed, “This is a good meal!” 

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