Keep On Moving On!

It has been more than 8 months since I’ve written an update on Aida!  As usual, there are several reasons for that.  First, until last week, she had not had any scans (or subsequent news) since just after Christmas at Vanderbilt.  If you’re looking closely, you might notice that there wasn’t an update then either, which was mostly because we didn’t get the results for an absurdly long time and when we did, we got a very abbreviated version. As might be expected, going between two hospitals can make things difficult, and additionally, Vanderbilt simply doesn’t give us the kind of information that Cincinnati does.  What we heard was basically that things were pretty good, and we were okay to wait 6 months for her next scans instead of 3.  All of that to say, there has been little to report on the medical front.  Apologies in advance for way too many pictures. 

I should report that we celebrated Aida’s 2^nd birthday in March along with a friend who is a day older (or two days if it’s a leap year) – a party complete with way too many adults for Aida’s liking, a little kid bounce house, and a visit from ELMO!  She LOVES Elmo, and our AMAZING friends were really into celebrating Aida with us!  Unfortunately for my friend who suggested and volunteered to be Elmo, her identity must remain a secret to the kiddos, lest all the toddlers get very confused and freaked out.  Maybe when Aida is 5 we’ll tell her that our awesome friend Karrie is the reason she remembers her 2^nd birthday at all.

And she does.  Of course, we have pictures, but Aida has a ridiculous memory.  Maybe I’m just biased and unaware of how normal it may be, but she wows me all the time with details and “stories” (usually a list of names, locations, activities and/or foods) from events that happened weeks or even months before that we never discuss.  She has little concern for letters or colors, but she lives for fun experiences that she can later day dream about and share with whomever is nearby.  Her stories are getting a little better now as she has recently arrived at the stage where she talks ALL THE TIME and repeats EVERYTHING.  Some of it is incredibly clear, some of it a mystery, and a delightful amount of it is unintentionally and hilariously inappropriate.  It sounds cliché to say, but she is a JOY.  We are having so much fun!  She is two, so there are time outs and often more ‘no ma’ams” than I’d like in day, but mostly we just laugh.  A lot.

So on to her health – in my typical, round about way!  Aida and I made the trip to Cincinnati last week – this time with my mom.  At this point, traveling 4.5-5.5 hours alone in a car with Aida would probably take twice that time and definitely more patience than I have in a day, so a back seat playmate and extra set of hands is invaluable. Over time, we’ve been able to take different family members and friends with us, which I love because they get to meet the team of doctors there that we love so much and experience what we get to see and hear each time.  This was mom’s first chance to go, and unfortunately, one of our very favorite doctors was not there!  We didn’t know until the day before the appointment, so it was a bit of a bummer at first.  Still, we got to see our surgeon (who hasn’t operated on Aida since last summer but always sees us anyway).  In fact, the surgeon would be the one to share the results of the MRI with us.

We arrived in Cincinnati late Sunday night to the home of our friends who always so generously host us, got too little sleep, and went in for Aida’s MRI first thing Monday morning.  I’m always nervous about the first few hours of the day because she can’t eat before the MRI, and it can be difficult to explain to a toddler why you’re refusing them food.  (She can’t eat because she has to be sedated in order to be still enough for the very long scans.)  Fortunately, she was AWESOME as we met medical staff and talked with her over and over about how she was going to get a mask, then a long nap, then she could eat.   She did fuss a bit when they put the mask up to her face, but someone was blowing bubbles, and I sang “ABC” at her request, and in no time at all she was out.  A few hours later we were called back to recovery for the greatest wake up I’ve seen so far.  She’s always super groggy and drunk, but this time – because she can speak so much – was FANTASTIC.  Sadly, we weren’t quick enough to get video of the drunken, slurred speech with exaggerated inflection as she identified “Meeeeeeemeee Mooooouuuuuuse” on the sticker they’d given her, but it was hilarious.  She sounded like a drunk Borat.   And then, as her mind cleared, she recounted the experience that I assumed she’d forget…“mask (hand over face), bubbles, mommy ABC.”

"Higher!!!"

The following day we returned to the hospital to hear the results before making the drive back to Nashville.  On the whole, the news is good.  Not GREAT but definitely good.  That is to say, most of the lesions are stable or smaller with no significant new ones internally (in comparison to scans from October 2013 and November 2012).  Having heard last fall about an “impressive” increase in the number of lesions in her spine and pelvis, I was greatly relieved with this report!  There were a couple of lesions that were stable to slightly increased in size, but I like to think about the fact that she has also increased in size!  We still spot new tiny red dots on her body from time to time, but so far these have not grown to a significant degree.  So as with everything else, we’ll just have to wait and see what happens with those.

The doctor showed us as many images as possible despite it taking a lot of her time to access the pictures.  Honestly, even with “good” news, it’s a lot to take in – maybe even more so for my mom who was seeing them for the first time.  And because we haven’t had a scan in Cincinnati in a while, I haven’t had an opportunity to see the images recently myself either.  Viewing what used to be a massive lesion on her liver that is now just huge was almost uplifting…in a “her liver used to be half tumor/half marbled steak and now it’s like one third tumor/two thirds marbled steak!” kind of way.  The spots all over her spine and crazy lesion behind her eye, however, are always simultaneously sobering and faith building.  The doctor noted that it’s pretty amazing that all of this doesn’t cause other problems for her.  “Miraculous!” I said.  She didn’t enthusiastically agree or high five me, but that’s cool.

It really is miraculous, and we are SO GRATEFUL that while no one can predict how this will all progress over the course of her life, we continue to live relatively normal lives for the time being.  So for now, we will continue with monthly lab work, largely to monitor/manage the level of her medication as well as keep an eye out for potential negative side effects of said drug.  Then, six or so months from now we’ll return to Cincinnati for another peak inside this little miracle.  Her eyes are doing reasonably well though a little "worse" than they were a year ago.  The ophthalmologist said he didn't like to use the word "worse" because it is what he would expect in a growing child, so I guess that's good.  

As always, thank you for suffering through yet another long overdue and lengthy update on the greatest little girl there ever was!  And thank you for continued prayers for us all!