Truly Loved

Baby Christi, Dec. 1997 - 7 months

I continue to plan Christi’s “Celebration of Life” and Shayne continues to rack his brain with treatment options that might possibly be viable. (He continues to beat himself up with, “Why am I letting her down? Why can’t I figure this out?”) Even as much as I tell him he’s in “desperate parent mode” as we’ve witnessed this with our cancer friends time and time again, I do admit I’d glad he’s doing it. When she’s feeling well for a time, it’s hard not to believe that she still can’t yet put up a good fight. Dr. Maris did tell us days ago, “Her body says it’s time to stop.” I agree she looks horrible at times- so pale and weak, but other times she doesn’t look so bad. Again today’s blood counts were great: hgb. 11.4, platelets 70 (to be transfused again tomorrow) white count 6.4 with an ANC of 5,550. Amazing for a terminal kid, eh?! I guess that’s what’s hard. If she had a hemoglobin of 7.8 we could rationally say, “Ok, we’ll stop the blood transfusions and just let her pass,” but it has been 11.4-13.2 for weeks! It’s hard and we want to life with “no regrets” even though we’ve said many times that will never be possible. So while I received word from the funeral home back home that her gown arrived from Los Angeles and it is gorgeous, I also slipped into “desperate parent mode” asked Dr. Maris, “What about low dose MIBG therapy?"

Dr. Maris sort of laughed (Well as much as “Mr. Serious” can laugh) and said, “That was scheduled for next week and recently cancelled.” He paused, then responded, “There’s no reason that she couldn’t get it next week though.” He said that just because she’s had two “good” days doesn’t mean that will continue. He does believe she’s stable enough now that we could try to transfer her home to hospice next week, but he’s also considering some mild anti-cancer treatments (low dose VP-16, perhaps) depending on how she does over the weekend. It wouldn’t be to cure her, but to try to continue this “decent’ quality of life she’s had the past two days and to give us more precious time with our beloved daughter that we just don’t want to part with.

Late last night Eric uploaded some pics which you can see by scrolling down the blog. I particularly love the two of her hugging Shayne, despite how pale and weak she looks. This morning she made me laugh and giggle many times while she sat on my lap while the wonderful nurse changed her bed. Earlier, while sitting on the potty, I laughed so hard I thought I was going to let go of supporting her. After I told her, “I love you, honey, “ she said, “Ah, mommy loves me. Even here in my natural habitat.” What a card! She’s lost some spark and dazzle, but definitely not her humor!

Shayla continues with this “anger” mood it seems. This morning when I called her before school to check on her she seemed to be upset with the Principal. “It’s really foggy and school isn’t even delayed!” She’ll spend the weekend with her good friend Amber and I know she’ll be well taken care of and happy, especially since I won’t keep calling and checking in on her.

Many have emailed me that the prayer website that has been set up for Christi is quite lovely. Because “myspace” websites are all blocked from the hospital, we’ve yet to see it but I will when we return home. Thanks, Jennifer www.myspace.com/sayaprayerforchristi Here’s thanking you all for lifting us up in prayer and here’s wishing you all a grand weekend! Enjoy!