Catching Up

Yeah, right.  It’s been a busy while.  We’ve had 2 very quick trips to Cincinnati for one surgery and one failed attempt at an MRI.  Add in a week long trip to North & South Carolina, regular busy life stuff, and you’re about caught up!

A couple of months ago one of the small-ish, superficial hemangiomas on the bottom of Aida’s left foot blew up like a tick and “ulcerated.”  Sounds crude, but that’s really and truly the best description.  Basically, it broke the skin and began to bleed a little.  Okay, so maybe that’s a better description.  Anyway, it was pretty manageable though annoying for Aida and me both.  It wasn’t really painful but seemed to itch some.  Mostly she was annoyed with the bandage…which was annoying to me.  Pretty quickly we sent photos and consulted with the doctors in Cincinnati.  Given its location, there was really no chance of it healing or improving, so we were told it needed to be removed.

We discussed removing a couple other not-yet-yucky little tumors but didn’t get the final call until we saw the surgeon.  I mean, if we’re driving all the way there and knocking Aida out, we might as well get the most bang for our insurance (and anesthesia) buck.  The surgeon removed a large (relative to the toes) tumor from her right big toe, which had been making shoes a little difficult.  Fortunately, Aida’s still running around barefoot most of the time…but winter is coming.  I think.  I hope.  Man, I hate summer.  But I digress. 

The surgeon also removed a really small lesion from the bottom of her right foot that looked just like the one on the left did before it turned into a bleeding tick.  J  No guarantee it would have done the same, but it’s likely.  So!  After a traffic-laden trip up and a very short sleep, Aida went into surgery at 8:00a.  As in the past, she did awesome.  No trouble with anesthesia or bleeding or whatever else.  Such a blessing.  Her recovery was not bad either considering.  And by considering I mean, considering we were trying to keep a toddler off her feet for a week.  Hilarious.  Impossible.  But we did our best, and she’s pretty well healed up!

We had planned to see our “regular”/favorite doctor in pre-op but couldn’t connect, so she tracked us down in the cafeteria while Aida was in surgery.  Love her.  It was there we had a conversation about these troublesome little tumors.  The reality is that some of the bumps we can see have grown or are growing, which means the ones on we can’t see could be growing as well.  Mind you, except for the tick, the growth is generally pretty slow.  Still, livers and brains and bones are more precarious locations for these little boogers, so it’s a concern.

Entertainment for the couch-ridden toddler

At some point in our cafeteria conversation with our doctor, I told her that we worry surprisingly little about all this mess.  She agreed, though I’m not sure if she thinks it’s amazing or ignorant.  (I think it’s a lot of Grace.)  Either way, as I told her, we know there’s almost nothing we can “do” about any of this, so worrying isn’t productive.  (Wouldn’t it be fantastic if I could live the rest of my life this way too?)  Of course, living a “normal,” scare-free day-to-day life makes it a little easier too.  And that smile…seriously…there’s a lot of very contagious joy in that 22 pound nugget.

Anyway, with the recent growth in mind, we returned this week for an MRI to decide the next step.  Trouble was, yesterday, Aida developed a little cough.  It wasn’t anything major, but it’s always a discussion when she’s going to be sedated.  In fact, I can only think of one occasion in the last year or so when she hasn’t been a little congested before sedation.  Unfortunately, the nastiness worsened today.  By the time we saw the nurse, the gunk was thickening making the MRI too risky.  I wasn’t thrilled, given our 5 hour drive the night before and plans to return this afternoon, but obviously didn’t want to take unnecessary risk.  Even if I had, it wasn’t really my decision.  J 

As it turned out, they weren’t overreacting anyway.  She got worse as the day wore on, so now we’re dealing with an ear and upper respiratory infection.  J  Suffice it to say, it was a long day.  Thankfully, I had a friend along for the ride helping with Aida and even driving while we napped!  We have THE MOST AMAZING FRIENDS.  When you pray for Aida and our family, please pray blessings on our Nashville family that takes such good care of us.  Seriously, I could gush, but I’ll just let you imagine the greatness.

So back to Aida.  Even without the scans, the current plan is to return to the anti-rejection drug (Rapamycin) she was previously taking.  (Nothing to do with a transplant – just the best treatment option.)  Of course, we don’t know the drug will shrink anything that’s already there, but it may reduce proliferation.  It will be a hassle, but in the scheme of things, I’m grateful for the caution.  The dose will be a little bigger, but I’m hoping the side effects will be minimal.  She’ll have to continue antibiotics and may well need blood pressure meds again.  For a variety of reasons, we’ll also have to return to the clinic here in Nashville once a month or so and then to Cincinnati every 3 months.  It’s not exciting, but it could be (and at times, has been) worse…like when tumors are growing.

***Side Note***

We were fortunate to have some genetic testing/mapping/something done awhile back from some of the tissue that was removed previously.  We received the results a couple of months ago.  The very simple version is that Rapamycin – the last drug Aida was on – is actually the best drug available for the alteration that they found in her little genes.

            ***Inside the side note***

            The “genomic alteration” is not hereditary, nor is it explainable.  Soooo,

good news, I guess, for future children.  J

***Side Note Over***

Aida will need to be clear for a few weeks before they’ll go ahead with the MRI, but we’ll be able to do it from here in Nashville thankfully.  And as for future surgeries, we are going to give the new (old) medicine a little time to work before doing anything else.  Of course, it’s always possible some of the lesions could ulcerate, which would likely lead to other surgeries.  Our surgeon is so terrific, and Aida does so well with it all, I’m not too worried either way.   

So that is all for now…or at least as much as I can manage tonight, and more than you probably need anyway.  Many thanks for continued prayers and support!!!

So That's New

THE GOOD NEWS:

About a week or so after our latest trip to Cincinnati, Aida & I made our monthly visit to Vanderbilt.  At our previous visit we’d been told that if all went well in Cincy, Aida would be able quit the last of her serious meds.  Since all was well, I took it upon myself to wean her from the miniscule dose that she had been taking.  I figured it’d be better to be weaned before going to Vanderbilt so if there was any change or cause for concern we’d know.  But there wasn’t cause for concern.  At least not in regard to this medication and her lab work.  In fact, we haven’t even scheduled our next clinic visit.  Since our pediatrician & hematologist communicate (God bless Vanderbilt Health!), we’ll just follow up with our pediatrician at our next visit.

***Applause Break***

The question that remained was whether she would be able to stop taking her blood pressure medicine.  Hypertension was supposed to have been a side effect of this last (significant) drug, but since the dose was so low, I was half expecting the blood pressure to be an independent issue.   It was indeed a bit high that day at clinic, but it wasn’t as high as it had been previously so we held out hope!  We saw our pediatrician a week or so later and had it checked again.  It was still high but better than before.  I was encouraged, but the doctor at Vanderbilt was still concerned.  If it didn’t improve she was going to refer Aida to a nephrologist.  Something to do with her kidneys.  I don’t know.

I told her I’d stop by our pediatrician’s office again the next week to have it checked once more before taking that step.  Lo and behold it was normal.  NORMAL.  Apparently the tee tiny dose had been causing the high blood pressure.  Woohoo!  So now we are left with Pepcid & the weekend anti-biotic which should continue for a couple more months.  In my professional, medical opinion we could probably go ahead and quit the anti-biotic too, but I’ll follow the doctors’ orders. :)

***Applause Break***

THE NEW ADVENTURE:

A few weeks ago we went for our third visit to the opthamologist.  Just before going I’d said I thought Aida’s eyes were looking better…but then I figured I was probably just getting used to it.  Maybe it’s a little of both.  Nevertheless, her right eye (or sometimes left) continues to turn in.  She’s farsighted, as babies generally are, but for whatever reason (perhaps genetic, perhaps a side effect of meds) her eye is turning to compensate.  (It’s called accommodative esotropia.)  Her vision isn’t really all that bad, and if the eye weren’t turning there’d be no real concern at the moment. 

But alas, it turns in.  The first option to correct the problem is glasses.  The doctor said her eyes were straighter when he held lenses in front of them, so we’re very hopeful this will be all she needs.  If the glasses don’t do the trick we will likely move on to patching before ultimately discussing surgery. 

***Boooooooooo Break***

Like I said, I’m hopeful the glasses are all she needs.

***Prayer Break***

With the exception of immediate family, I waited several days to tell people about this new adventure.  I wasn’t ready to talk about it.  It reminded me of when Aida was born.  I didn’t talk to anyone on the phone for weeks.  This was obviously less intense, so it only took few days to process.  :)  Anyway, I wasn’t ready to respond to what I knew I would hear.  “That’s gonna be SO cute!!!”  In fact, I had to apologize to my brother after I responded to him (via text), “…said every parent (person) whose kid doesn’t have to get glasses.”

Cute was not what I was thinking.  I was just trying not to bawl.

I had recently made my own cuteness comment to a parent whose child (about Aida’s age) had gotten glasses several months before, knowing Aida might have to get them as well.  Maybe I was trying to psych myself up.  I’m not sure, but when I talked with them more recently about what kind of glasses he had, I apologized if my comments were insensitive.  The truth is, the tiny little glasses on tiny little people can be cute.  And they’re obviously purposeful.  But it’s not something this parent wanted to be a part of her little girl’s life.  

Anyway, I’m adjusting to the idea, but I’m still not excited about it.  I kept saying how much I just like her face.  Then I wondered if all her pretty headbands covering her still generally bald head would still work with the glasses.  And then there’s the hassle of convincing a 15 month old to wear them.  Super fun, right?  Also, it turns out, they’re bifocals.  Yes, bifocals.  That definitely detracts from the cuteness a litte.  I’m about as happy as I can be with the frames we chose (they’re magenta), and I’m encouraged that the bigger she gets the cuter the frames get.  :)

We actually got the glasses just a few days ago, and they are cute in their own way.  I’m getting used to them quicker than I thought I would.  Mark, on the other hand, liked them to start.  He said he was partial to glasses and wished I’d wear mine.  Ha!  Opposites and all that…

Aida LOVES to be outside.  Mama sure could sure use a covered porch!

I’m still in shock about Aida’s feelings about them.  She pulled at them 2 or 3 times in the doctor’s office then not again until she was tired.  She always pulls her headbands off when she gets sleepy, and so now she pulls off her glasses too.  :)  When she got up the next morning she spotted them on the table and pointed so I could put them on.  I didn’t think they were going to make such a difference since her vision is not that bad.   Apparently they do. 

So far, only one headband doesn’t work with the glasses.  Also, so long as we have these magenta frames there will be no more red shirts.  Burgundy maybe, but not red.  I can live with that.  Good thing.  We have no idea how long she may need to wear them.  Age 8 or so seems to be the ballpark estimate…which is about the age I started wearing glasses.  Everyone in my immediate family has been in contacts or glasses most of their lives, but Mark’s family can see ALL BY THEMSELVES.  Here’s hoping this resolves itself in time, and she got her daddy’s vision genes.

THE PERSPECTIVE:

As much as I have whined about these glasses…and even told my closest friends they couldn’t rave about how cute they are when they first saw them…I am incredibly grateful to be where we are.  Terribly, terribly grateful.  Of course, we’re still not totally out of the woods.  But as I gave the three sentence version of Aida’s situation (I bet you don’t believe I can do that) to a new doctor yesterday I was yet again reminded how far she’s come.  I said just the other day that I have always been so glad God gave Aida to us. 

We are spoiled and continually amazed by the most amazing little girl.  She is incredibly easy (as babies go), and is one of the happiest little people I’ve ever seen.  EVER.  She radiates joy…the contagious kind.  If she can’t make you smile, you may be dead inside.  She has more personality than Mark and me combined.  She grabs our phones and iPods then dances to tell us that she wants to hear music…then claps when the song ends.  (I may have taught her the clapping part.)  She laughs ridiculously easily and loves to laugh so much that she fakes it if there’s nothing to laugh at.   She adores her “dadadadadadadada.”  If she’s not already, she really wants to be your friend.  Rest assured, we’re not counting on any future siblings to be this easy going.  But then maybe God just likes us.  :)

Getting Better All The Time

It’s been a good week!!!  We left for Cincinnati on Sunday afternoon, and with the exception of one interstate construction hold up and the fact that the KFC we stopped at was closed...at 9:30, it was a good trip.  We went to the hospital for Aida’s PET scan on Monday afternoon, and she was awesome.  You’d never know she’d not eaten all day!  She did finally fall asleep on Mark shortly before the procedure, which was wonderful.  She’s generally a great sleeper – in her crib…with her sound machine – not so much when we’re out and about.  She’s still sweet…just perpetually awake.  Anyway, though we were there for about 3.5 hours, the scan itself was only about 45 minutes.

Once she could hold her head up again, we made a quick stop at the house (our friends’ that always host us when we’re in town - so thankful for them!) before we all went to Aida’s first ever baseball game…Reds vs Cubs. 

  

We lasted through the 11^th inning before calling it a night.  (It ultimately went 13; Reds over Cubs 5-4)  Anyway, we had a great time.  I’m only a tiny bit sad that her first game wasn’t a Braves game.  At least it was the National League. J

Don't let this fool you...
she was just resting her eyes while she ate.
She was up 'til 11p.  ;)

After a bit of a late night, we headed in to see our favorite doctors Tuesday morning to get the results of the scan.  They were, of course, thrilled to see her.  It never hurts to have the happiest, friendliest, and probably cutest baby in the world.  We were pretty excited to see them too!  Almost immediately they told us that everything looked very stable (pretty much the same), and they didn’t see a need for the bone biopsy that had already been tentatively scheduled for Wednesday afternoon.  I’m pretty sure I threw my hands in the air and said, “Yay!!!”  This particular doctor describes herself as “conservative” – meaning she errs on the side of caution - so I was thrilled to hear that what they’d seen on the scan the day before didn’t warrant further exploration.

The bottom line(s) are these…they still don’t entirely know what’s going on, and she is still very much one of a kind.  We will continue to monitor every 6 months or so because it is possible that all of this could turn into something else, though the concern was tempered with the pleasure of the current status.  Essentially, everything looks the same.  Not better, not worse.  And while better would be better, “not worse” is still fantastic.  Since it does not appear that these are going away on their own, there will most likely be surgeries down the road to remove the lesions (from the outside).  We may even begin that process when we return in 6 months.  At the moment, we don’t have serious concern that any of them is causing developmental problems (as some have in the past) so removing them isn’t urgent. 

It looks like she’ll be able to quit taking some or all of her daily medicines now as well.  Two of the three drugs are to treat issues that may be caused by the third.  We don’t know that for sure, but at the very least, she should be quitting the most expensive and potentially problematic one.   Woohoo!!!  Of course, lots of babies (and adults, ahem) have reflux so that may or may not remain.  And it wouldn’t be a stretch to think that all the extra vascular mess she has is causing high blood pressure.  We’ll just have to wait and see if the reflux and high blood pressure exist independent of the immunosuppressant.  She’ll also likely continue her antibiotic for a few more months as is protocol post-chemo.

And finally, our doctor in Cincy is recommending that our visits here in Nashville be spaced out to every 3 months instead of every one.  How great would that be???  Crazy great!  All in all, we left the hospital in great spirits and celebrated at our favorite little place, just a few minutes from the hospital.  We’ve only been to 2 or 3 places, but we found this one first, so why keep looking?  If you’re in town, go visit Adriataco’s.  SO SO SO yummy. I may or may not be hungry for some more right now...Anyway, after packing up, we hit the road and had a great trip home.  We’re all pretty worn out and spent the day “recuperating.”  Aida took TWO 2+ hour naps!  :)  

So for now, we keep believing for complete healing and giving thanks for an amazing last 13+ months.  Thanks for the continued prayers.  We are eternally grateful!

Happy Birthday (Month)

It has been quite some time since my last post - which is almost entirely good news.  We’ve been busy living semi-normal lives with only the watermark of Aida’s health concerns. It’s always there – medications, “bumps,” checks to Vanderbilt J – but it generally doesn’t overwhelm our day-to-day function.  At a glance, some people don’t even notice it. 

Of course, a hot, humid, Nashville summer is coming, and people will see.  I will see – much more than I care to, but I really am so very grateful that the ugliness doesn’t represent the imminent danger it once did. And while I have a tendency to pre-worry about what we cannot know, I’m trying to focus on how far she’s come.  And I rely on my old faithful “Do not worry about tomorrow for tomorrow will worry about itself…” or as The Message puts it,

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. – Matthew 6:34

Aida turned one a couple of weeks ago.  And as every parent ever said, “I can’t believe it’s here already.”  It has been a transformative year – simultaneously freeing & terrifying; desperate & hopeful, broken & strong; jealous & grateful; surviving & thriving; exhausted & exhausted.  Then exhausted some more.  Babies.  Geeze.

After months of not writing, I’d like to be entertaining, but having not written in so long, it seems there are too many important things to say.  Boring, but I’ll control myself and save some for later – whenever that may be.  As I said not writing is almost entirely good news.  Sadly, I started writing this post a couple of weeks BEFORE Aida's birthday...2-1/2 weeks ago!  The bad news is that we are so busy, I can’t seem to find the time.  I already get way too little sleep.  Bummer.

***

A lot happened in Aida’s first year.  There are several themes that echo in my mind and spirit over and over. 

Grace

Trust

Peace

Provision

Community

Love

Sacrifice (that of others, not ours)

I could go on…

But if you asked me for the first word that comes to mind in describing Aida’s first year, it is undoubtedly “grateful.”  I am so happy she is alive – and happy she is happy!  She seems to be laughing and smiling all the time!  I’m so happy we’re not at the hospital every day and that she can have a bath any time she wants…though Mommy & Daddy don’t manage to give her one but once or twice a week.  I feel badly about that occasionally, but honestly, she’s a baby.  All the really dirty parts are getting wiped all day anyway, right?  J

I don’t know how to begin to thank the people that have walked with us through an eventful year; sacrificed time, money & energy; prayed countless prayers; offered endless encouragement.  I wrestle with accepting what feels like the biggest tab we could ever owe.  I am continually humbled as the support continues.  We are overwhelmingly loved.  There is unbelievable peace in knowing that you have people on your side that will do whatever, wherever, whenever and at whatever cost.

To our families, village and friends:

We can never say thank you enough for all you’ve done for us, but we’ll try.  Know that you – all of you – have spent the last year being God’s hands in an expression of His indescribable love.  Until now, I have never truly felt the weight of God’s grace and undeserving favor.  It is terribly humbling. 

I’ve told people recently that I don’t feel like I can ask anymore – from anyone.  I don’t have room to list all the blessings we’ve received, but as I said before, Aida is alive, happy and making us happy.  How could I ask for more than that? 

Several months ago, a family member told me that to not ask for help when it has been offered is insulting.  It’s true of my family, and I know it’s true of God as well.  But that doesn’t make it any easier. Still, while we have much to be thankful for, there are still significant needs.

***

If I’m being honest, some days the watermark I referenced earlier is more prominent than others.  I took Aida to the audiologist this past week for her second hearing test.  It seems she’s still too little (restless) for the doctors to have a complete picture, but there is apparently some hearing damage.  Honestly, we’re a little surprised based on her responses to us.  Of course, we can’t know if what she hears is, “Aida, I love you” or “Wah wah wah wah wah wah wah” like the nanny from the Muppets.  We’ll go back again in 3 months, this time to a doctor familiar with hearing damage caused by chemo.  We’re praying for some sort of, “Oh, she’s fine.   She’s a baby. She just couldn’t sit still long enough.”  In reality, sitting still or not, an “all clear” will require a miracle.

Last month we went to the ophthalmologist and while they’re not yet ready to sound the alarm either, we see that Aida’s eyes are not quite right every day.  We will go back there in a couple of months as well.  Later this spring, we’ll head to Cincinnati for scans…because while we can see some of the tumors on the outside of her body growing, we have no idea what is happening on the inside.  If the one on her knee can grow, so can the one on her brain.  Today I photoshopped a tumor off her knee so I could post the picture on Etsy.  I felt guilty about it as I kept staring, wishing it were reality. 

Some days, I sort of feel like we’ve crossed the line from survival and adrenaline driven living into a deep breath, stay focused, we have a long way to go phase.  When our house burned when I was in high school, the fire didn’t destroy the entire house.  It was still standing, and some items were salvageable.  But what wasn’t damaged by fire was affected by smoke and water.  Those things that we could save required work to restore and many were left stained with smoke or its stench.  At the moment, it seems the fire from a year ago is contained, but we have a lot of cleaning up to do.  How much, we just don’t know. 

On the other hand, some days I just think about how I’m going to contain her when she really starts walking on her own.  We’ve seen a few steps so far, but she’s not very happy about it.  Any celebration of standing or stepping is promptly followed by sitting and limp legs.  Of course, I CAN.  I just don’t WANT to.

***

Finally, I’ve prayed a lot of verses and had them prayed over us.  But perhaps the most consistent comfort has been a song.   I often change the “Him’s” to “you’s,” but you get the idea.  If Aida ever said anything besides “Dadadada” and “Babababa” she  would probably say this song is her second favorite behind “Take Me Out To The Ballgame,” which is her absolute favorite.  Anyway…

‘Tis so sweet to trust in Jesus,

Just to take Him at His word

Just to rest upon His promise:

Just to know, Thus saith the Lord

Jesus, Jesus, how I trust you

How I’ve proved you o’er and o’er

Jesus, Jesus, Precious Jesus!

O for grace to trust you more

Thanks for trusting with us thus far and thank you for continuing to pray for…

*HEALING for Aida’s eyesight, hearing, tumor growth (inside and out), immune system (so that 2 days bug doesn’t last 6)`

*PROVISION

*RELATIONSHIPS

*BALANCE

*WISDOM

*PEACE