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!