It seems I have inadvertently made downplaying important events in my life a noble pursuit. If I get praise, judgment, attention or even compassion I want to know they're warranted. Let the facts speak for themselves, I say. Understated is the new black. The problem, I'm learning, is that I sometimes forget or diminish the facts after having successfully NOT embellished them. Recently, while praying with/for our family, my great uncle thanked God that Aida was alive. He thanked Him that we know she will live - that we are now seeing what we were believing for before we knew. I can only liken my reflexive response to such comments to that of listening to someone sing off key. My teeth clinch, eyes squint ever so slightly, and I try to just breathe through it without giving myself away. Talking life or death just seems so dramatic. She's doing so well.
It just took a second for God to remind me. It's only been a few months since we discussed her living in the hospital because she was getting transfusions every day and needing them more and more frequently. And I can clearly remember the doctor telling us they were going to "throw everything at her" because they didn't know what else to do. They said if we tried liver surgery she "wouldn't make it off the table." I calmly but seriously considered whether I should be pursuing life insurance for her...did it exist? If it did, would she even be eligible? I talked with Mom about Hannah and Samuel...then Abraham and Isaac. My parents, brothers, sisters-in-law and brand new nephew came to visit...not really because she was at death's door but because she could be at any time.
I don't even know how to express the grace we feel for being where we are today. I see and hear stories all the time that don't progress like ours has, and my heart breaks for those families. I pray they experience Grace, Mercy and Love like we have...regardless of our outcome or theirs. I pray I don't so easily forget where we were only MONTHS ago. I'm not feeling ready for a tattoo or anything drastic just yet, but apparently I need a reminder. Still, I'm grateful that she's so well that sometimes, for a moment, we CAN forget. What miracles.
And we continue to hear good news. GREAT news really. Yesterday they imaged the lesions on her brain and liver. BOTH are smaller. They're still large. They're still on her brain and liver...but they are SMALLER. Next week we'll be skipping chemo altogether as she moves into a bi-weekly regimen. We'll visit an ophthalmologist, though her eyes seem to be just fine. We'll also see her good, old fashioned pediatrician. Woohoo! Also, we had a developmental screening today, and she's doing great. She's probably a tiny bit behind average in an area or two but not to any degree of concern. And since she's been off steroids she is picking up the pace, so she'll be good to go in no time!
We do have some decisions to make and would appreciate your prayers for guidance. First, doctors here want to remove the central line she's had in her leg the last 5 months. It has made her life of blood draws, transfusions and drugs much more tolerable than it would have been otherwise. It works exceptionally well and has remained free of infection...truly amazing. Still, the risk of infection with it in is still high, so now that she's bigger, they want to replace it with a surgically implanted port. It's routine and safer in the long run. She could even have a real, live, sitting-in-the-water bath! The question is, how long will she really need it if we're working to get off chemo? Would it be worth it? There's no way to tell. Second, there's discussion about immunizations. She's not had any because of the steroids and other drugs, but since she's finally off steroids, it may be possible. After all, NOT being immunized carries risk as well. We just don't want her to actually get the mumps (or whatever) because we're trying to prevent them, if that makes sense. For now, the doctors are still discussing, but it will be up to us soon enough.
I'm wrapping up. I promise. And I now sound like my pastor dad. Speaking of Dad...Aida and I made our first non-medical trip last week...to the grandparents' house! Aida travelled well and entertained even better. I told them the threat level has been lowered, but we're still being careful; so we're sorry we didn't get to have everyone over for a meet and greet. :) Soon, we hope! And FINALLY...because we are settling in to our new normal, the time is coming for me to find a way to bring home some bacon bits. God's provision has blown us away so far, and we continue to trust Him. In the event that the much needed and appreciated monetary donations are not his long term plan, I will be looking of some part time, from home, not 9-5 work. If you know of some, please pass it along. If not, please pray for opportunities and continued provision. I'm not planning to spend my day with online surveys, but I'm not above data entry or stuffing envelopes! And I'm always happy to organize...whatever. :)
Thanks for reading, keeping up, giving, supporting and praying!
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