Friday, October 02, 2009

Untitled Update on Anna's Eyes . . . .

Well, I have multiple titles I could use for this update. As I was driving home from Anna's appointment in Hershey this afternoon, I was thinking of everything I could use for the title . . .

"Cellcept Isn't Working"
"Appointments Every Two Weeks are Getting Really Old" (and tiring, . . . we're weary of traveling to Hershey so often!)
"May be Switching to Humira" (in the near future, not right away)
"It Was the Best of Times and the Worst of Times" (these words are probably copyrighted, and really way too dramatic for the situation, but it stinks to get bad news on the birthday of your oldest child)

Those titles just about sum everything up. There is no change in Anna's left eye, even after increasing Cellcept for the past two weeks (from 1,000 mg daily to 1,500 mg. daily). (How can that be?! Except that it must not be working for her.) Another phone conference between the pediatric ophthalmologist and the pediatric rheumatologist, and the conclusion is that we continue with the increased Cellcept dose (plus the Methotrexate, Leucovorin, and Pepcid Complete that she's been taking all along) for two more weeks, then we meet with both doctors (separately--the ped. ophthalm. first, then the ped. rheum. an hour and a half later.) (Maybe we'll have time for lunch in between, but Anna is going to miss all but one and a half hours of school that day). Humira is now "on the table" as the next step.

A comedian is going to be at our local college (my alma mater) that evening (October 16) for Homecoming events, and my son wants to go. I told him we probably should (he and I--Anna doesn't want to, and my husband just wants to come home after working there and overseeing the event setups all day). I think I may need a good laugh at the end of that day.

My words from my last update are a reminder to me---it is what it is, and we do what we have to do. I'm to the point (took a few years to get here) that I can just hear the "plan," file it in my mental filing cabinet to mull over every now and then, and put it aside to focus on life in the meantime. No use worrying about tomorrow and what might be, but focus on the gift of today. Still praying fervently for a miracle of some sort, and for the possibility that we don't need to go down another road of yet another medication with its many pros and cons. Ultimately, as I've said before, my children belong to Jesus before they belong to me. I trust God completely, knowing that with every storm of life, He's our anchor.

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