Her Faith

It’s been two months, and of course, I have much to share.  So with a little less artfulness than I'd prefer…

The medicine Aida restarted a couple of months ago has seemed to have a really positive effect.  Several of the larger lesions made an almost immediate improvement, which has been pretty encouraging.  It has since leveled off, but many are unquestionably smaller.  There are, however, new lesions.  I wasn’t really aware that was part of the deal until they started appearing.  I don’t think it’s unheard of, but it pretty much falls under her one-of-a-kind diagnosis.  Sooooo…surprise!  I’ve been trying to ignore them as if my not acknowledging them means they aren’t really there…or maybe they’ll just go away.  Honestly, I was hoping that these new ones would be the first to go – sort of like how the last place you gain weight is the first place you lose.  No such luck.

After a failed attempt at an MRI in Cincinnati (due to illness) a couple of months ago, we finally got Aida’s MRI done in Nashville several weeks back.  We heard back from Vanderbilt that everything looked pretty good.  In fact, they told us that the lesion on the brain appeared smaller.  Amazing, right?  Still, we were holding off on really celebrating because they were referring to pretty old scans in comparison to what they would have in Cincinnati.  But smaller is smaller, right?  Seemed logical.  Ultimately, I was just waiting to hear HOW good the news would be once the radiologist in Cincinnati had a chance to review the scans.

So when the call came yesterday from our favorite doctor with less than stellar news, I was caught off guard.  First of all, the lesion on the brain appeared to be the same.  No biggie, but it was a little frustrating to have previously heard otherwise.  Then she told me that the radiologist was “impressed” - and not in the “I can’t believe how she’s totally better – what a miracle” sort of way.  Nope.  She said the radiologist was impressed by how many MORE lesions there were on her liver and in her bones.  So those new ones we’ve been noticing on the outside aren’t imagined, and they aren’t alone. 

 

We talked a little while about the ins and outs of what that might mean.  She tried to offer what was sort of encouraging about the situation.  We have an identified mutation with a known drug treatment, for example.  But then of course, she also said she worries about Aida every day because

she just doesn’t know what might happen.  She’s anxious when she sees an email from me in her inbox.  She told me about a handful of other kids who have one-of-a-kind (similar but different) situations.  Some are okay – some not so okay.  The word “malignant” was tossed out.  Some other kid – with a family like us – is facing that.  I asked if Aida would be on this seemingly intense medication “forever.”  The short time side effects are minimal, but I think there might be concern about the liver long term – not to mention the cost.  Ironic, no?  The medicine treating the lesions all over her body – including a significant one on her liver – might damage her surprisingly normally functioning liver.  But people somewhere are researching…maybe there will be other drugs down the road.

We will have another MRI in a couple of months to see if the drugs are helping this new proliferation.  If not, they will likely biopsy something from the inside for the first time.  They have had “plenty of tissue” from the outside, but if this new growth continues, they’ll have to start digging for more answers…if there are any to be had.

So pause for a moment with me if you have the time…take a deep breath.

The first 6-8 months of Aida’s life were eventful to say the least, but after that time we began to settle into something resembling normal.  I’ve talked many times before about the season of miracles we lived in during those first months, and that I knew it couldn’t possibly continue forever – that strange experience of being simultaneously on a mountain-top and in the depths of the valley.  But in a way, we are still in a season of miracles.

In inexplicable God fashion, I got a job when Aida was about 8 months old.  It is part time and mostly from home - a whole new kind of struggle that I’ll write more about elsewhere.  Suffice it to say, it has been a complicated and amazing 20 months (as of today.)  The last few months, however, have been impressive in at least one good way. 

It has not been easy – physically, financially, emotionally or in any other –ly – but it has been better than I expected.  Don’t get me wrong.  We are usually exhausted, broke and spent…but God has provided grace and many other things.  (He also gave us Aida – the happiest little girl in the world!) One day, I’ll write a book that will almost certainly focus on grace.  I told someone the other day that I only want to write ONE book though because once I’ve accumulated the life experiences required to fill the pages, I will have had about enough.  Ha!

I say all that to say, God has been GOOD.  He continues to be good, and he cares for me in amazing ways, which again, I’ll have to write about at another time.  I will share these bits of hope, however.  After processing the information I got on the phone for a bit, I cried for just a minute.  Aida laughed.  Mark was out of town working, so I didn’t want to interrupt his day with the news that had shaken me.  While interrupting my mom’s day instead, the Lord brought to mind something that I had randomly shared with someone just the day before.

Very early on in Aida’s life, someone shared with us something God had given him while praying for Aida.  She will live and not die.  It was pretty huge, and I held on to it for a long time.  After a while, it was easy to believe it because she seemed to be improving all the time.  There was always uncertainty, but she was okay. 

Then on Good Friday of this year, at what was a very somber and moving service at our church, I had a strikingly hopeful experience with God.  The crowd was small compared to what would be there for Easter Sunday.  Mark & Aida had stayed home.  I sat by myself, engaging with God, sobbing and wrote the following…on my phone:

Her healing is coming. 

Good Friday – Jesus who had been their hope, died.  He left.  They were confused.  They were lost.  They were embarrassed.  They were discouraged.  They’d believed and it wasn’t true.  There is risk in believing, but Jesus hadn’t abandoned them.  There was no mistake.

Her healing is coming. 

It is coming regardless of what I do or don’t do.  Her healing – her salvation – isn’t dependent on my disciplines.  My sacrifice.  My faith.  God requires those from me – for my relationship, but she has been promised.  She will live and not die…and now her healing is coming.  All God’s promises are yes and amen.

Beneficial sure [my efforts] – but he died for her.  By his stripes she will be healed – with or without me.  My part is MY part.  I will not lose faith in the waiting – in the not knowing.  Challenges – even familiar ones will try me – again and again, but I will have faith.  I can do all things through Christ who strengthens me.  I am nothing on my own.

Her healing is coming.

So I have held on to that word that God gave to me – just weeks after her 1^st birthday.  Her healing is coming.  Of course, I immediately wondered, “What does that mean?  What does “healing” mean?  Will she be 2 or 22 or…”  He didn’t feel the need to be any more specific. 

Several months later, however, I had a profound – perhaps divine – thought.  I was listening to our pastor speak about the woman with the issue of blood who touched the hem of Jesus’ garment.  (If you’re not familiar, you can read the story HERE.)  After being healed, Jesus told her, “Daughter, your faith has healed you.”  (Luke 8:48)  Really and truly – I have NO IDEA what the story’s application was supposed to be about that day…because at that moment God delivered a personal, specific glimmer of hope to me. 

What if Aida’s faith will heal her?  Daughter, YOUR FAITH.  It feels almost selfish of me to wish it all away when she’s not even old enough to know that it’s part of her story.  If God healed her tomorrow, he would be glorified no doubt, but it would really only be part of our story.  What if it will be HER FAITH that will make her whole?  Who wouldn’t want that for their child?  Of course, I don’t want her to suffer, but we ALL suffer.  I can't spare her of that.  How fantastic would it be for HER to know what it means to be healed?

That said, if God wants to heal her today I am TOTALLY OKAY WITH THAT.  Great really.  I’ll tell her her story so much she’ll think she can actually remember being a baby.  The 5 million pictures will help too.  Just wanted to clear that up in case anyone thinks I’m praying for her healing to be delayed.  I am not.  J

As usual, there is virtually nothing we can do today or next week or next month for Aida except pray and implore others to join us.  It is genuinely easier not to worry when you fully grasp your lack of control.  (There’s a lesson in there I’m still learning.)  I would like to feed her a little better, but I’m pretty sure canned peas versus dried peas is not a determining factor in her major health issues, so I’ll start with prayer.  

Oh!  And because I forgot and have written too much to try to creatively weave in this last bit…we visited the ophthalmologist yesterday.  All is stable in that area.  The glasses and patching are doing what they’re supposed to do.  Her eyes are straight when looking through her bifocals, though one still turns in (as expected) when the glasses are off or she’s looking above the bifocal.  All normal, considering.

So to FINALLY wrap up, please continue to pray for Aida and our family.  Pray for BIG, beautiful, undeniable, can’t help but laugh and cry at the same time miracles.  Pray for our family to be strong in a very busy time of life (healthy kiddo or not).  Pray for wisdom in decisions we will face – from surgeries to budgets to child-care.  Pray for her doctors and THEIR families.  Pray blessings on the people around us – our Nashville family – who cares for us like our own family.

We are so grateful for you all.  Until next time…

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!