It was a really good week last week. Really good. Monday - Friday Aida seemed to feel really well. She's getting very fun (a little more interactive), so we're having a blast making faces, funny noises and jerking her arms and legs around for her. :) Her current favorite is what I call "the cowgirl." Funny mouth noises (courtesy of yours truly) with crazy arm motions like she's shooting pistols. I promise it's way cuter than it sounds. Especially since she grins and (tries to) laugh. Maybe "Sheriff Aida" is a better name. She does seem to be the boss. Anyway, early in the week Mark's parents went to see other family for a couple of days so that my Uncle Doug, Aunt Ramona and cousins Meredith and Luke could hang out/help out or a few days. Aida was terribly entertaining if I do say so myself.
Her numbers at clinic last Tuesday were great. No trace of the crazy week before except that her platelet count was actually a little high! We go back tomorrow for more of the same (lab work and chemo) after dropping the grandparents at the airport. I'm posting tonight before any potential news tomorrow since we'll be on our own again by then without so much time on our hands. Aida's not going to know what to do without MULTIPLE people at her beck and call. :) At any rate, Father's Day was generally uneventful...a pleasant contrast to our Mother's Day at the hospital! In fact, we began to notice that some of the tumors are feeling "different." I can't say for sure they're smaller, but they're definitely different. Our Cincinnati doctor told me last week that the numbers would improve (like they have been) before the tumors would significantly shrink. Looks like we may be on track. One day at a time though...celebrating today and knowing tomorrow could bring all sorts of surprises. On a side note, the Cincy doctor is at an international vascular conference in Europe this week. I bet Aida's the talk of the town. :)
At any rate, we're planning a little trip to Cincy to do a little more digging. First, we're planning (again) to have the tumor on the back of her head removed - this time by the surgeon that worked on her last time. They'll do some fancy shmancy testing to look for more info for an actual diagnosis. (For all you Googlers and medical enthusiasts playing at home, we're talking about exome sequencing.) Second, I believe we may look at the bone lesions as well. I'd rather find things out by looking for them than being surprised by them later. We may not find anything out, but we'll do our best! At the very least, we'll be part of a little research that could help some other little boy or girl later. We can only hope! In the mean time, we're very happy with the improvements all around.
I'm personally struggling a little with suddenly (perhaps temporarily) having what appears to be a happy, healthy (excepting the tumors) little girl that is basically quarantined. It's not so much that I want to get out (though I do) but that she can't go with me (us). That was a lot of parentheticals. Anyway, the doctor here says her immune system is equivalent to that of their transplant patients. I so want to share her with our friends here - our Nashville family...not to mention make runs to Target on a whim! I know. I know. We're definitely better to be safe. When we were at the clinic so much time seemed to move more quickly than one might expect. Now that we're home a bit more the prospect of being here ALL THE TIME is a little disheartening. Freedom feels so close yet so far! I'm still very glad to be home and not at clinic or the hospital. Do you hear me preaching to myself? The steroids are still being slowly reduced, so I'm hoping when she's done with that we'll be given a little room to live!
One final note...I've recently been reading about prayer. I realize that many of you may have been doing a better job than me, so this won't be earth shattering. What I mean is that I haven't been putting it all together very well. I've been asking for big things - healing, for example - but have only been specific about small things. I've decided to pray for the following (among other things, of course):
*I pray that the tumors shrink shockingly quickly...in weeks - not months or years
*I pray that the answer to the prayer above will allow her to quit taking all the crazy meds very soon
*I pray that all evidence of these tumors will disappear COMPLETELY - I guess she can keep a cool scar on her liver if she wants ;)
*I pray that the current (and any future) lack of income will go UNNOTICED while medical bills get paid - loaves and fishes anyone?
Again, there are a lot of other things to pray for, but for today, these are my big four. They're all my now tired brain can handle tonight anyway. Thank you all for continuing to support us in every way. We cannot do it without you!
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