Oh My Darlin' Aida Bec

I never intend to write long essays when I start these posts, but that's how it usually goes.  So for those of you who could live without the pure pearls of wisdom I'm sharing, jump to the final 3 paragraphs for the nuts and bolts. I know...the final THREE. How many paragraphs are there??? If it makes you feel any better, it takes me an embarassingly long time to write, re-read, edit, re-read, edit, re-read, edit... Honest. I'm editing.

I was reading a friend's blog yesterday about the day his daughter was born, and it felt like a movie script...sort of the way all those fairy tales feel once you've experienced real life. It was a lovely story, and I'm terribly glad they have it to tell. Of course, our story reads a little differently. Aida is almost 6 months old now, and miraculously peace, grace, gratitude and the like have been winning out over worry, confusion and desperation since she came - 4.5 weeks early. But just for a moment today, as I read the story of broken water, epidurals and family, I felt a little short changed or jealous or some other selfish emotion I can't articulate. To be fair, my water did break in the middle of the night - all dramatic like - and I had an epidural (or two plus a spinal) and my family did come. I had all those normal things. I also happened to have the previous afternoon's notice that little else about this event would  be so delightfully normal.

I've said before that finding out Aida had troubles before she was born (albeit a day before) was a blessing, and it was. We had been in touch with family, went to the right hospital, knew to alert the doctors, etc...all very significant advantages. Since this is how we lived it, I can't imagine getting the difficult news after a painful delivery instead. Perhaps that's worse. Again, I am grateful. Still, how nice would it have been to not have the somber grey clouding her grand entrance? A little more "Yay! She's here!" and a little less "Here's the update..." 

I read my friend's post as the evening news anchor talked in the background about a sick little girl in the area. I think I stopped to listen probably because I have a sick little girl too. In that moment of selfish longing for a simpler, happier Aida story, the news lady described this little girl's condition...incurable. I cried. My baby girl still has a lot of healing to do, but whatever it is she has is responding to something...she's improving - slowly but surely. Her dramatic entry was not what one hopes for. The first few months were extremely difficult, but it is getting better. She is getting better. She will be better . (Amen and amen!) I find myself humbled and broken by the things we haven't had to endure. God has been good.

It's been suggested to me that I gather my writings so that someone else might somehow be encouraged by our story. I imagine there are people out there that could be, but I hesitate when I consider the families I've seen in recent months who aren't facing such good prognoses. They've been fighting for years not months. Their children's lives, and their own for that matter, will never be normal. We are so blessed that top of mind today is getting her to sleep through the night not whether she'll be here for Christmas. The unknowns are still there. The unattractive and the unseen tumors are still there, but I keep remembering, praying, claiming "His grace is sufficient." It has been sufficient for us. It must be sufficient for all those families as well.

I am happy to report that she is doing well. We opted to leave the central line in that has been so successful up until now and are at peace with that decision. We're hoping/expecting it can stay in for the duration of chemo. And there is good news on that front as well. Her numbers yesterday were good after the week off, so after getting chemo yesterday, she's off for another two weeks. :) This makes Mommy and Daddy (and everyone else) very happy. She will probably continue the bi-weekly regimen for another 6 - 8 weeks until it is time to image again (looking at the lesions on the brain and liver). If she has continued to improve to that point, chemo will be spaced to every 3 weeks, but that's a while from now.  

During our recent two week break, she finally saw her pediatrician and was given immunizations which, apparently, is now safe to do. She wasn't thrilled about it the next day, but it is definitely big picture good news. We also saw an ophthalmologist who said there were no lesions hiding in/on/around her eyes.  Other than all that good news ;), things are stable. The big (and small), ugly masses don't appear to be improving noticeably. Only time will tell if these will go away or if she'll require more surgeries down the road. I'm getting tired of looking at and scrutinizing them for growth or change, so I'm anxious for fall to arrive with its pants and sleeves weather.  Also, football, changing leaves, and the general romance of the season will be welcome. :)

Finally, I hope you are celebrating with us about all this good news. You are all a part of her story...our story. Please continue to pray. 

Pray the lesions disappear... and quickly!

Pray that rest will come soon for this tired mommy. 

Pray for provision and for opportunities for me to be a part of that...like NOW.

Pray for Mark (Daddy) who has been working long hours to provide then spending his weekends helping to relieve me. (Of course, that means hanging with Aida!) His work can be stressful and there is no end in sight to the extra heavy workload. While this is undoubtedly a blessing financially, it is taxing physically, mentally and emotionally. 

Pray for Mark and me as we are finally looking for the time to break free and go wild and crazy...like out on a date to Outback or some such nonsense. A date! What an idea!

Pray the next post won't be so long. God is a God of miracles. ;)

With so much love...

Over The River And Through The Woods

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!