A Big Day (and then some)

Last Monday was a big day.  Aida got what would be her last dose of chemo!  After the doctor left the exam room, I danced to a little ditty I’d like to call “That’s Great News.”  I wrote it right there on the spot.  It was inspired.  The lyrics are “That’s Great News…That’s Great News…That’s Great News.”  Like I said.  Inspired. 

PICC (Peripherally Inserted Central Catheter)

Anyway, the end of chemo also meant the end of the PICC line.  I’m not sure which I was more excited about.  Don’t get me wrong, the PICC was a great blessing, but I was thrilled to see it go.  And with no plans for it at all, I asked to keep it.  I know that’s weird.  Mark was unimpressed…or maybe a little creeped out.  Seriously though, it’s just a big piece of plastic - not a gall stone.  That’d be gross.

Aida has been on a monthly prophylactic antibiotic to guard against some sort of something terrible (because of the drug she is on).  It’s great because it’s monthly and doesn’t seem to have any annoying side effects.  It’s annoying because it is given through IV and takes forever.  That means that with no PICC line, she’ll be getting stuck.   So!  We’ll be trying an oral antibiotic soon (2 days a week) that we hope will replace the monthly IV.  She took this new antibiotic once before, but it bothered her stomach.  Incidentally, this would be the same drug that was initially (and accidentally) prescribed at 8 times the necessary dose.  At any rate, if she is somehow able to take this antibiotic, she’ll only have to get stuck for blood draws which is a LOT better than getting stuck for an IV.

While getting her antibiotic on Monday Aida got SUPER sick.  I’ll spare you the details, but suffice it to say that I now have a Vanderbilt Hospital towel, two washcloths & a nice, new t-shirt from some high school I’ve never heard of.  I’m not exactly sure where the bug came from, but it seems to be all the rage right now.  Fortunately, Aida was finally able to take a REAL BATH.  She was crazy sick, so it wasn’t too exciting for her, but Mark & I enjoyed it anyway. 

So to recap…last Monday was a big day.

Meanwhile, one of her ears was not completely cleared after the double ear infection a couple of weeks before.  It wasn’t too bad, but it would turn out to be enough to interfere with the hearing test she had on Wednesday.   We’ll be going back in 3 months to have her hearing tested again. They’ll check it once a year or so for the next couple of years because she was in the NICU for a while, has had lots of antibiotics and on and on.

On Friday, we had a follow up appointment with our ophthalmologist.  Aida’s a little farsighted which is why her eye turns in sometimes.  Still, the doctor says both eyes can (and do) do everything they’re supposed to in the tests.  She just favors one over the other.  The good news is that the muscles in both eyes are all good, and everything is symmetric.  We go back when she’s 18 months – apparently around the time that things get pretty well settled in.  Who knows, we might be looking for a trendy pair of glasses come September.  For so many reasons though, I pray not.

This past Monday we went back to the pediatrician to have her ear checked out since our holidays involve flying.  It’s still not terrible, but because of the travel, they’ve given her more antibiotics. One day, when she’s not on immunosuppressants, maybe I’ll try garlic and essential oils and all those other granola (natural) remedies for ear infections and whatnot.  One day.  Maybe.  We’ll see. 

 

Daddy's Girl...Mommy's Girl...Aida (Happy) Medium

In the meantime, we still have a long to do list (including but not limited to)…

-see some family

-see some Christmas lights

-survive the wait to see Santa for a photo that will likely involve either crying or eating a strange man’s beard

-find some big people food that Aida will eat without gagging and/or throwing up

-talk, sing, dance, laugh, then belly laugh (Aida’s job every day)

-see more family

-recover from travel

-re-adjust to life without 47 people around to entertain/enjoy/spoil Aida

-re-adjust to life without baked ham, gingerbread cookies and all the other delicious foods that are (wisely) reserved for holidays

Have a very Merry Christmas! Love you all!

The Good, The Good Enough, The Long Haul...and The About Time

It’s a little hard to believe it’s been a month since my last post.  If you’ll keep that in mind when reading, it won’t seem so long.  Maybe.  Busyness at work, the holidays and family visits have filled our time, I guess.  Not to mention…we took a very quick 2-day trip to Cincinnati last week.  Mark’s parents were in town, so his mom & I drove Aida to Cincinnati this past Wednesday for an MRI to be followed by an appointment with our doctors Thursday morning. 

The trip up was not AWESOME – simply because Aida couldn’t eat anything after 4 hours before the appointment time and could have no water or anything after 2 hours before.  She was not thrilled.  Of course, with playing or walking or whatever, we would have been in better shape, but she was stuck in the car seat.  Still it could have been worse.  Anyway, we got there right on time, which would actually be an hour and a half before they would actually sedate her.  So we played, walked, coaxed, sang, danced, and did everything we could to keep her happy until it was finally time.

For some reason, I thought they would only be scanning her pelvis/spine for the lesions in her bones, but in fact, they were scanning her head & abdomen as well.  It’s logical, of course, if you’re going to sedate her.  Just do it all!  I had been expecting about an hour-long procedure, but it was two & a half.  Again, a good plan, but not what I’d had in mind.  Aida had been sick with a cold & was given antibiotic for a double ear infection the day before.  She didn’t seem much worse for the wear, but I sure was.  She wasn’t sleeping well so neither was I.

On that note, I should jump to the “about time” news.   Two days before we left for Thanksgiving, Aida slept through the night.  Two nights in a row.  Obviously, hauling her off to sleep in some new place wouldn’t be ideal, but it wasn’t too bad!  She only got up once the first night we got there.  Had we been at home, we would have been farther away with a sound machine, so we might not have heard her anyway.  The real trouble came when she got that cold I mentioned.  Not breathing well makes sleeping a hassle.  Anyway, we’re just about back to normal now, and while she’s getting up earlier than I’d prefer, she’s sleeping for a good 10 hours at a time.  It’s a beautiful thing.

So the good enough news is this…the lesion(s) on her brain are growing “with” her, as are many on the outside.  She has one that looks like a beauty mark on her eye.  It doesn’t look bigger to me on her eyelid, but of course, SHE’S bigger, so everything is. The bone lesions are still a question.  They looked worse on the MRI, but they’re comparing to an MRI without contrast (this one was with).  We should hear more this week after our doctors talk to the radiologist that initially spotted the lesions months ago.  At the moment, we don’t know if they are actually worse or just look that way.  If they ARE worse, I’m not sure what will happen next.  They can be biopsied, though so far, biopsies have only been sort of helpful.

The good news & the long haul news are related.  For now, the liver lesions are the best.  They are actually, genuinely, measurably smaller.  That’s wonderful news really.  They showed us the comparison from months ago til now.  It does not take a trained eye to see the improvement.  I have the images on a CD but haven’t figured out how to open them.  When I do, I’ll share.  It’s amazing to see.  Still, our doctor is still “nervous.”  There are two reasons. First, they still can’t definitively say what these things are.  That is, they can’t predict how they will behave, so it’s useless.  Anything could happen.  Or nothing.  We just don’t know.  Second, she said they used to say that the liver lesions never turned into anything, so as long as they weren’t causing problems (liver function, for example), it was fine.  Unfortunately, they’ve had patients with “similar” lesions that have turned into something scarier.  I don’t remember what she called it, but it was something something-noma.  Not good.  Anyway, for now, we’re okay in that regard.  They’re shrinking, not growing.  If that changes, we may have other challenges.  Sooooo, we’ll scan every 6 months or so for a while…like til she’s 7 or 8 probably.

All that said, she is doing well TODAY.  They are not consuming like they used to, they are growing at a reasonable pace, and we have phenomenal doctors to count on.  I was so tired the day of, I was just coasting on fumes. I was more positive than everyone else, I think, until I got some sleep.  It’s still all very good.  I just keep looking forward to the day when this is “that thing that happened one time.”  I just thought it’d be here sooner.  The doctor in Cincinnati doesn’t seem to think chemo once a month would do very much, so it sounds like we may be done with that soon.  Yay!!!!!!!!!!

For now, we’re scheduled for chemo on Monday, so I’m hoping that is the last or at least the next to last.  Apparently, they keep kids on the other drug she takes for 2 years.   She’s been on it for 6 months.  It’s really not a hassle except that it has to be refrigerated, costs the most & causes (mild) stomach & blood pressure issues that require two more medications.  The doctor also said that there’s no way to know if any of the medications have done anything at all.  Maybe the coagulopathy (blood issues) got better on its own.  (I’d say maybe it was a miracle.)  Maybe the drugs helped.  Maybe not.

 

In normal life news, Aida is 9 months old and continues to try to eat everything.  Almost.  We got a Christmas tree yesterday, which has thrown her for a loop.  She grabs it and stares but hasn’t tried to eat it yet.  Interesting.  She is progressively more mobile.  This morning, Mark’s mom found her with the monitor across her chest and the fan that was clipped to the side (up high-ish) down inside the crib.  Don’t worry.  They are now permanently out of reach.  Then this afternoon, she crawled the equivalent of a couple steps. Also, I’m afraid she’s been spoiled the last couple of weeks too and/or she is at the beginning stages of separation anxiety.  The latter is a bummer because she’s generally SO easy.  We can break her of the spoiled expectations, but the feeling that we have abandoned her will just take some time.  Boooo.

Please pray for Aida’s eyes.  I’m concerned that her eye that has turned in a little - off and on all along - is worsening.  Fortunately, we already have a follow up visit to the ophthalmologist next week.  As of the last visit, the doctor didn’t think lesions/hemangiomas/whatever were the culprit, so it might just be, as our pediatrician put it recently “bad luck.”  Seriously.  Again, it’s another something that we just don’t know.  I may be transitioning from making pretty headbands to pretty eye patches.  Wonder if there’s a market for that.  Anyway, please pray that for once we have a clear answer!  First pray that it’s nothing, and she’s all good.  Then pray that it’s clear either way.  J  Also, please continue to pray for her complete healing.  I sometimes forget (ignore) how much mess there still is.  I always want to avoid being dramatic, but the reality is still quite serious…and ambiguous.

Thanks so much for continued prayers, support & concern!

Worth A Thousand Words - The Photo Essay

33 pictures must be worth...a LOT.

She turned 8 months old November 1, so here's 8 months of the photos you (mostly) didn't see.
(Scroll to the bottom for the the current status highlights.)

03.01.12   Happy Birthday, Aida!
Four and a half weeks early -- 7lb 6oz, 19.5" 

03.04.12   Three Days Old - In The NICU

03.08.12   First Family Photo

03.10.12   Sun Bathing Under the "Bili" Lights 

03.19.12   Going Home!

04.--.12   The "Bump"
At birth, this hemangioma on the back of Aida's head was about the size of a boxed chocolate.  In a matter of weeks, it would more than double in size on its way to a "bump" that filled my hand. 

04.22.12   The Magic Bullet
The portable sound machine we could NOT have lived without! 

04.26.12   More of "The Bump" and Also Some Butt

05.01.12   An Education

On our first visit to Cincinnati, we got a LOT of information.  The goal was to find out which of these many branches would be Aida's diagnosis.  In the end, we're still not 100% sure.  

She is "one of a kind."

05.01.12   The First To Go
 The first hemangioma to go.  In hopes of arriving at a diagnosis, this lesion (along with a small one on her ankle) was removed for biopsy.  This would be her first of two surgeries (as of 11.01.12).  This one was preceded by nonstop transfusions the night before.

05.01.12   Her Homemade Hyperbaric Chamber 
If you've seen the movie Zoolander, you know what this is about.  
If you haven't, it's just a cute picture of our baby girl post-surgery. :)

05.13.12   Mother's Day
We were spending every day - even Sunday - at the clinic or hospital getting transfusions.  The situation was pretty desperate at the time.  After talking to our doctor in Cincinnati, a mother of 5 herself, on that Mother's Day, we would expand Aida's treatment with yet another drug in hopes of finding something that would help her.

05.21.12   The Clinic

05.21.12   The Clinic

06.01.12 The Bump & The Other Bump

The mass under her arm, which was fairly small at birth, grew very quickly. It would be part of coming conversations about surgical removal.

06.12.12   Those Legs

07.02.12   The Bump - In All It's Glory

This slightly blurry photo was taken the day that hemangioma, the largest external mass, was surgically removed.

07.02.12   That Other Bump

This photo was taken moments before she was taken back for surgery and just moments after we decided to have this mass removed.  We were only scheduled to have the mass on the head removed but upon arriving, it was decided that there was more risk in leaving this one that there was in removing it.  It was a very intense 5 minute conversation/prayer.  The purple mark is for the surgeon...just in case there was another massive lump on her chest wall that might cause confusion. The purple marking on the back of her head left a stain on my arm where I was holding her that lasted for days.

07.07.12   A Week (Or So) Post Surgery

07.17.12   Lumpy Legs

07.17.12   More Lumpy Legs

08.07.12   A Head That Was Healing

08.15.12   Lumpy Legs Not Getting In Her Way!

************

When I finally decided to share all this, I took photos of many of the external bumps and lumps.  I wish I'd made some of these photos earlier on, but at the time, I wasn't interested in documenting the mess!

09.22.12   Left Arm - Elbow, Upper Arm, Wrist

09.22.12  Belly Button, Big Toe

This girl has what looks like an actual button on her belly! That's a hemangioma in there.  Seriously!

09.22.12  Head & Left Leg

She has several bumps on her head (a little difficult to see here) that look like little a dime got slipped under her skin - slightly raised and round.

The left leg has deep hemangiomas on the inner thigh and below the knee that look like bruises.  They've grown some since this photo, so they are now a little more obvious.

09.22.12   Right Leg

The back of her right thigh is a mess.  I use the word "gnarly" a lot.  It's actually several hemangiomas all jammed together...or on top of each other...or something.  These were much smaller at birth and were the site of a punch biopsy just days after she was born.  The results were misrepresented, or at the very least, misleading, but who's counting.

09.22.12  Left Calf, Right Leg, Right Knee, Right Thigh

(clockwise from top right)

09.22.12  The PICC (peripherally inserted central catheter) line

After various temporary IVs, the PICC line made life MUCH easier when she was just 8 days old, providing a port to draw blood, administer blood products and ultimately chemo. Since she is a growing girl, on November 1, the line was "rewired" (for the second time) to lengthen it so the medicine gets where it needs to go.

09.22.12  The Scars 

THIS is what an amazing surgeon leaves behind.

10.03.12   I've Got To Admit It's Getting Better

Still some messy legs and other ugliness, but this is a MUCH happier, healthier Aida!

10.27.12  The Greatest Little Girl In The World

Here's a recap of where we are today...

*Aida is 8 Months old with TWO teeth!

*She's undergoing chemotherapy once a month which we hope will be done altogether before her first birthday!

*She is still on an immunosuppressant (and the blood pressure & reflux meds that go with it), but off steroids.  No steroids = ridiculously happy baby!

*She has not had required a transfusion of any kind since June 19! That's over half her lifetime ago! :)

*The lesions on the brain & liver are stable or possibly shrinking very slowly.  There is an MRI scheduled at the end of November to check in on the lesions in the bones.

*Some of the lesions on the outside are still growing slightly.  Many of them look different from day to day or even throughout the day...sometimes softer or harder, sometimes more red or purple, etc.

*There has been some improvement to a few of the outside lesions, but none have come close to going away completely.

*It is not clear if or when these will go away at all. It's possible some will and some won't, though we are hopeful.  Going away would most likely mean flattening out, likely leaving behind scarring and/or discoloration.  (Cosmetic issues can be addressed down the road if need be.)

*Currently, there are no plans to surgically remove any more lesions unless they become a developmental concern.

*Aida is otherwise happy, healthy and making our lives wonderful!

Hello, Society. We're Back. Ish.

It’s been a busy few weeks.  Aida & I spent the week before last at Grandmommy & Grandpa’s, managing to visit friends nearby, family not as nearby (but at the zoo!), take the customary pumpkin pictures (in the mountains no less :) and do a few projects around their new house.  Also, Aida cut her first tooth. She’s tough and all, but geeze…I’m not excited about doing that over and over.  Mark said he hoped we enjoyed the week-long trip because it wasn’t happening again.  :) We tried to Facetime with him one night, but it FREAKED Aida out.  It was funny for us, sad for him & possibly traumatic for her.  She could see him & hear him, but he was NOT there. WHAT WAS HAPPENING?!?!? Anyway, we flew home on Monday, I started my new job on Tuesday, went to clinic on Wednesday and was been trying to catch up and keep up before a day at church and then “work”…also at church.  :)

Clinic last week involved our bi-weekly chemo treatment (30 second injection into her line) + 2 hours to see the doctor, sit around & wait.  Her numbers continue to be good, so everyone continues to be thrilled.  In fact, pending confirmation from imaging, we were scheduled for chemo in FOUR weeks - not two.  Very good news. Our doctor was giddy.  After clinic, we went downstairs to radiology for ultrasounds of her liver & brain.  The fontanel is closing in, but for now they can still see the lesion from there.  Before too long an MRI will be required.  It’s just as well though since she’ll need one to see the lesions on the bones anyway. She ended up having an x-ray of her belly as well to check the location of the PICC line that runs from her leg to her heart-ish area.  She grows, but the line doesn’t, so we have to be sure the medicine is still getting where we want it to go. Apparently it’s fine because until this moment I didn’t think about the fact that no one said anything about it afterward. 

What they DID say was that the lesions are “stable” with “no change to slight decrease in size.”  I take that to mean the change, if there is any, is so small it’s impossible to tell precisely on a squirmy, sometimes screaming, tired baby.  I would have loved for them to say, “Look at that.  They’re gone,” all nonchalant-like.  They didn’t, but I’ll take “stable” any day of the week. All that to say………we are now on a MONTHLY chemo regimen. AMAZING.  In the mean time, Aida is in the middle of her post-chemo cruddy feeling (only like a 3 or 4 out of 10). But then there’s the teething, so who can tell. Also, we’ve been trying new (real) foods, which has been entertaining.  Today she had avocado.  Sort of.  She spewed most of it back out of her mouth before gagging.  Last night we tried banana (because she likes banana baby food), but she gagged.  In said post-chemo cruddy feeling the gagging made her spit up.  It was pretty funny.  Well, it was funny to me since she was sitting on Mark instead of me, and she was no worse for the wear.  Just think…this time next month we’ll be saying, “Oh, yeah.  I forgot what these few days were like. This is lame.”  Because it will have been SO LONG AGO.  We still have to go to clinic every two weeks to get the dressing on her leg changed, but that’s no big deal.  She hates it but not because it hurts.  It’s more a “LET ME GO! LET ME GO! LET ME GO!” sort of situation than an “OWWWWWW!!!!” It only takes five minutes.

I’d like to pause here to say “kudos” to the PICC line for being so fantastic, infection free & long-lasting.  Gold star, PICC line.  Gold star. We will not miss you when you are gone…which could be only a matter of months.  Lord willing and the creek don’t rise.  Actually, the creek can rise a bit if it wants to.  When the PICC line is gone Aida can finally just “swim” in the creek.  More importantly, she’ll get to have her first REAL bath! Oh! I should also mention we’re heading to Cincinnati in a few weeks to visit our awesome doctors there and have the MRI to see the bone lesions.  I can’t wait for them to see how UH-MAZING she is doing.

I’m already getting long, so maybe another day I’ll write a little more about the miraculous, new job.  It really is going to be great.  Before starting I felt like I was going down a slide, knowing it was the right direction, trying to slow myself with my feet and hands like a little kid.  After all, sometimes a slide is fast and fun and you land on your feet.  Other times you get all static-y or get slide burn or bust your butt at the bottom.  So far, it’s been really amazing.  Parts of it feel very familiar, and other parts - like the MacBook - feel very new.  I’m an iPad, iPhone wannabe user, but the real deal is going to take me a little time. I’ve already researched shortcut keys and had to Google a lot of basic things, but I’m getting the hang of it.  The most troubling part for now is definitely the challenge of getting 6 hours a day in at home.  Here’s hoping we’re in a good rhythm soon. 

And now just for fun…A friend of mine met Aida for the first time while we were in SC, and Aida got all excited - panting like a dog.  I’m serious.  She pants like a dog – tongue and all.  Anyway, my friend said, “That’s not in the blog.”  So now it is.  Also, for your viewing pleasure because I can’t wait any longer…meet Batgirl.  Nananananananana Nananananananana Batgirl!

I’m off…struggling to keep my eyes open at 9:15p.  Photo essay coming very soon!  Please continue to pray for our family and our little miracle.  It will still be a while before these bad boys are gone, and though the risks/consequences are less serious compared to our previous worries, they can still cause problems. Please continue to pray for all of us in this transition time for me.  I wasn’t exercising before, but now I’m REALLY not exercising. :) Ha! Playtime with Aida may need to involve lunges & sit ups with her strapped to my chest. And as always, among all the other usual stuff, pray for continued provision.  God has been amazing thus far, and we continue to live by faith. Thank you to those who are sacrificing on our behalf.  You are all unbelievable.  We will pay it forward one day…or possibly pay it “back,” I guess, if that were the way the cookie crumbled.  :) Know that we seek God for wisdom in our finances and work hard to be good stewards of what He has given us. Thanks also to those who encourage endlessly and to those who have never met us but are praying anyway.  Amazing. We love and appreciate you all.

The News

I've been doing some writing but haven't finished anything because I've been a little distracted. :) I'm going to be traveling this week, and the day after I return, I start my new part time job! It suddenly feels like summer is ending. I'm trying to cross out all the projects on my to do list before everything changes! It's a miraculous arrangement really. I'll be working for our church - primarily from home. I'll spend Tuesdays at the office on a regular basis to start. A mom friend will be keeping Aida at the house for us which is amazing. Ultimately, I'll be having lunches and other meetings, but Aida should be able to come with me for many of those, I hope. She is an incredibly good baby (knock on wood), so she's easy to take along. 

I'm probably disproportionately worried about the changes. Six hours a day four days a week (plus Sundays), three of which are at home, somehow feels like the dream life I've been leading is ending. It's not, of course, but I'm freaking out a bit. We couldn't get a much better set up, but like I said, it feels like summer is over. That said, we're very grateful. Last time I wrote I mentioned having a meltdown then God showing Himself over and over.  One of those showings came in the form of an email from someone at the church asking if I might be interested in a position they had available. Just days before I had blubbered on the phone to Mom about not knowing what the next step was. I didn't have any idea. This time though, I didn't have to know. It just appeared. That almost never happens. 

So the change is here. Aida will be just fine and will hardly know the difference, so please pray for ME :) Aida is doing well (though not yet sleeping through the night. :) I was hoping to have had imaging this past week, but it isn't scheduled for another week and a half. THEN - assuming all is well, and we're pretty sure it is - we will be able to space chemo a bit farther apart. For now, her numbers are pretty good. They bounce around a bit, but it seems only one drops at a time, comes back up then another drops. More importantly, the drops are still in normal range for the most part. It's hard not to be a little concerned when watching so closely like we do, but we've been in pretty good shape for a while. Praying that continues! And seriously, pray for me in the transition. I'm not TOTALLY freaking out. I'm just mostly freaking out. 

And coming soon...I'm finally working on something of a photo essay. I've been pretty good lately about not wanting/needing to hide the exposed tumors when we're out, but I haven't really been ready to "publish" them. Of course, on occasions when the little tumor on her toe has been visible, I've felt badly for unsuspecting people who don't know how to react to the (basic) answer of what they felt was a simple question...and felt annoyed as Mark was given recommendations for alternative therapy to the chemo poison we're giving her. :) I'm sure they all mean well. Anyway, many of the people who have met Aida have seen her in all her glory, and I know that many who know her story are curious. Somehow it feels better in person, but we'll never see all of you in person. :) Besides, at this point there is a progression to see which I'm anxious to share. So! This week when I have access to a computer that moves faster than a snail's pace, I'll get it put together. 

Until then, time to get to work on that to do list!

Oh Me Of Fickle Faith

Notes:

I have recently begun to fear that English buffs have been reading my posts in horror. I apologize in advance for the disastrous grammar.  I used to be better, I think.  Generally, I’m just trying to communicate my pauses and emphasis by ignoring the rules, but all those other troublesome spots are a result of the rules turning to mush in my otherwise occupied brain.  Instead of researching like I used to do, I just guess…or pretend it it’s all correct.  I really do care.  Don’t worry.  When I write a book, I’ll have an editor.  (We will fight.)

As for the length, if you’ll think of it not as a blog post but a really short short story, we’ll be golden.

Until now, I have been writing posts from iPad making it difficult to include pictures.  Sorry about that! I realize everyone doesn't see Instagram & Facebook, so I'll try to do better.  ENJOY!



 

Aida the Needtobreathe Fan

My last post was nearly 4 weeks ago, and I've been thinking a lot about what it is I should be writing. Obviously, an update on Aida is required, but good news of good news is that the update is shortish. And this time around, I'm STARTING with the update! Aida turned 6 months old 2 weeks ago. Since then, she has gotten her ears pierced, taken her first flight (even setting off the metal detector leading to a pat down of us both), and now SADLY gotten her first cold. From me. She is almost over it and was generally less whiny about it than I was; but to be fair, she gets to sleep without interruption..... 



Aida's 6 Month "Photo Shoot"

Anyway, we're still on a bi-weekly chemo schedule which is wonderful. We can hardly wait for even more time in between treatments!  She handles it incredibly well, but it takes about a week for her to totally be herself again.  Even still, the reaction to chemo is easy in comparison to life on steroids! Her counts today were good, and imaging of the brain & liver lesions is being scheduled for our next visit in 2 weeks.  I'm still watching the lesions more closely than I'd like...noticing the subtlest of changes. We've recently discovered that the walls of blood vessels in these vascular tumors can get inflamed which makes the lesions look bigger.  I guess technically they are bigger, but for the most part that seems to recede, returning them to their former glory. 

Aida & Mommy

There HAS been some growth though, which is always a bummer. Also, maybe from the growth or the inflammation or both, one of the lesions on her arm is actually causing pain intermittently which is pretty unusual. It was irritated for several days a couple of weeks ago, and alas, the pain/swelling/inflammation returned yesterday. :( If we touch it with even the slightest pressure she instantly cries big tears. Fortunately, quick hugs and kisses make her forget almost immediately. After freaking out a bit the first time, our Cincy doctor calmed me via text, and the situation improved on its own. Speaking of Cincy, we're talking about a trip that way (just to check in), but gratefully, we're not really in a rush! :) 

And now, after weeks of writing pages and pages of pure brilliance (I promise) in my head (but not on paper/iPad), I'm finally getting it together. Another day I'll write about how procrastination - sometimes out of a need for things to be just so - makes it impossible to succeed. That is to say that the inability to narrow down exactly what to write makes it impossible to complete a blog post. I've just spent 30 minutes writing this paragraph. I am not exaggerating. It's ridiculous. On to what matters...

The last couple of days Johnny Cash's "Folsom Prison Blues" has been popping in my head, but I've been inadvertently changing the lyric. Well, just one word really. I had sung the first few lines several times before I realized my version wasn't making sense. "I hear the change (train) a comin'. It's rollin' 'round the bend..." For those of you taking notes, this is what we call a "Freudian slip." Change IS coming. I am not ready yet. Having had our lives suddenly turned upside down 6 months ago, it's a little odd to be anticipating this still undefined transition. I hear the change/train coming, but I haven't seen it yet. It sounds awfully big and scary - like it could just flatten your little old penny right there on the track. For the first time in a while, I am experiencing some semblance of calm. Even better, this calm is coupled with unadulterated delight, and who wants to change that? Aside from a completely healthy Aida (and perhaps a modest windfall), I can hardly imagine something better…well, maaaaaybe a family trip to Europe with chocolate covered strawberries for dessert at every meal.  That’d be pretty okay.

Anyway, I've always wanted to stay at home and be Supermom. You can imagine the look I got from my freshman advisor in college when I told her. Seventeen year old me liked to think she was lonely and jealous of my idealistic "ambition." OBVIOUSLY I would work first, so the degree was necessary. As was foreign study, of course. Regardless, stay at home supermomdom has always been a dream. So here I am now at home...making head bands and leg warmers. Living the dream...more or less. The thing is, we knew before Aida came that I would need to generate income on some level because it turns out Supermommying does not actually pay in dollars. Monopoly money maybe, but we don't have Monopoly so I can't speak to that definitively. It's truly unfortunate for mommies (and kiddos) everywhere.

So with this in mind, last weekend I had a momentary meltdown. I was fretting over “finances.” Again. I was "pre-worrying" as Mom calls it. Despite an undeniably miraculous 6 months, I quickly reverted to my usual feeling that I am "justified" in my lack of faith in this area. After our leap of faith move to Nashville, our Dave Ramsey inspired financial plan disintegrated. There was little financial peace for a long time. Instead, we came away with war wounds. We truly believed God orchestrated the move (most days anyway), but it was difficult to reconcile our obedience with what felt like an absence of provision. As I write this I am suddenly aware of my absurdity. Did I really just say I feel "justified" in my lack of faith? Yikes. It's true that faith is too present a theme in scripture to even pretend it's not a struggle for pretty much everyone in some way. It's human nature. But then so is sin. And human nature can be a freaking mess.

It's not that I doubt He can. Sometimes I just doubt He will. In fact, I know that sometimes He doesn't. I still can't really understand it, and that's okay (she said convincing herself). On their way into a fiery furnace Shadrach, Meshach & Abednego said "He can, but even if He doesn't...it's cool." I, on the other hand, tend to say "He can, but if He doesn't...Hey! I'm on fire here! Does nobody care I'm on fire?  I. AM. ON. FIRE. FI. YER. Burning! Dying! Anyone? (That means You, God.) No? Fantastic.” (Cue big sigh and eye roll followed shortly thereafter by sobbing.) Fortunately for us, this time He "did." Relief came the very next day. And again the next. And the next. I told a friend that God had his eyebrows raised saying "Yyyyyyyyep. ‘You know the plans I have for you’ and what not. Seriously.  You really should know. No, really. You should know." Oh me of fickle faith.

So now what?

I have no idea. 

In the meantime, please...

Pray for continued provision. 

Pray for a clear path and opportunity. 

Pray for peace in the transition. In fact, go ahead and pray whatever you were praying when things were crazy bad and we were inexplicably calm. That was a good one! ;)

Pray for Aida's continued progress. 

Pray for Mark as he is still working super hard...and still taking care of Aida and me. :) I couldn't ask for a better partner. Two weeks from today we celebrate our 8th anniversary. Go team!

Pray for this beautiful, amazingly happy, laid back baby to SLEEP THROUGH THE NIGHT ALREADY!!!

Aida's First Flight

Thank you for the continued prayers and support. We need it!

With so much love