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!!!