Sunday, October 25, 2009

Reluctant Change . . . .

We've made the switch to Humira. No more daily pills for now. No more weekly Methotrexate shots (and the vomiting that always accompanied those shots). Those "pluses" are what Anna is focused on, so she's happy. After two months on Cellcept, the inflammation in Anna's left eye had not changed. In fact, the ophthalmologist explained that even though the inflammation wasn't terrible that day of our appointment, there were cells sticking/clumping together in the front of the chamber of her eye, which indicated that the inflammation is ongoing and fluctuating. Left with very few options, we've gone to Humira.

Although I read the warnings about Humira occasionally to familiarize myself with the side effects and possible complications, they can be rather scary, so I choose not to dwell on them. Even though I'd been told by many people (and read on the internet by writers whom themselves take Humira) that the shot burns going in, Anna didn't seem to mind so much. Lidocaine had been prescribed, which we used to fill up the extra space in the pre-filled syringe (and then mixed it in with the Humira). I coached Anna on "Lamaze breathing," just in case she found the shot to be painful. But afterward, she told me that the shot just felt like "Dad getting a splinter out."

I know that so many people were praying for us--thank you!!! I felt your prayers! I had to gather up my courage, give myself some pep talks, and sing a few songs to myself to psych me up in order to give her this shot. Scott didn't stick close by (as he always did for the Methotrexate shots, to provide a distraction and to hold the bucket), because the Humira needs to be given in her thigh or stomach (Anna chose the thigh), and she's 12 and very much a young lady, so modesty and privacy were a concern for her.

I always have to think through everything. It's taken me well over a week to come to the conclusion that this is okay, and it's what we need to do. I pray constantly for wisdom and direction, and this must be the direction for now. I would have loved for Anna's eye to clear up, for other, less scary options to be available, but that wasn't the case. We go for an MRI on Friday to see if Anna has jaw involvement, and that's okay, too. This (life, and Juvenile Arthritis, etc.) is a journey, and we were never promised a smooth ride---but God promises strength and grace and peace to deal with the hard parts of the journey when we lay it all at the feet of Jesus. We are so blessed to live in the era in which we live, when so many medical advances are available to us. We as a family are very blessed to live so close (relatively speaking) to excellent medical professionals and facilities. So even though our trips to Hershey are many (in the past three months, anyway), at least we live only 20 miles away and not hours away. There is much to be thankful for. We don't know what the future will bring (how long Anna will be on this, etc.), but we can trust God with our future. I know that without reservation.

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.