Saturday, March 30, 2013

What a great day...inside of Hotel California...

Greetings All,

I'll start with the medical stuff, to go opposite of my normal stuff....

As the immortal line from Hotel California goes,  "You can check out any time you like, but you can never leave".

We're stuck in a waiting pattern for now, and have no discernible exit to the hospital.  Here's the situation:

  • The cultures from St. Joe's Livingston (SJL from hereon) came back positive with for a gram-negative bacteria.  Gram-negative bacteria are no joke, especially in people with compromised immune systems.  Some examples of common gram-negative bacterias are e-coli and salmonella.
  • However, she has only shown about 90 minutes of negative effects from this infection, on Wednesday.  They gave her a broad-spectrum antibiotic (cefepime) every 8 hours since Wednesday to beat down the infection, and it hasn't shown its head since then.
  • As of today, they learned from SJL the exact type of bacterial infection that she showed on Wednesday in the culture, and again on Thursday morning in the culture at Mott in her broviac.  However, they're waiting back to hear about what specific sensitivities that the bacteria has, so that they can craft a specific assassination antibiotic for it.
  • The bacteria that she showed evidence of has a tendency to be both mean and resistant to antibiotics.  They need to kill it, and kill it dead (I think I'm quoting an old exterminator from the 80's here), so that it doesn't linger or thrive.  To do so, they have to have all the information on the bug that they can.
  • Amie has shown no fevers, no vomiting, no symptoms at all since having the broviac removed.  before that, she had a few minor fevers....but they might have already killed the bacteria.
  • They want to be really, really careful with her and craft the best plan.  They want to keep us there until that plan is ready, so that if she manifests any symptoms...they're there to immediately jump on it.
We had two sets of visitors today, both wonderful.  Iman brought us a sack o' Samosas.  I ate one, but left the rest for Shelley, who has an eternal and binding love with Samosas.  I love them, totally.  But I'm not IN LOVE, with them.  If Shelley could marry a Samosa, I believe she might divorce me and cozy on up to the wonderful deep-fried folded potato pastry.  

Also, Matt and Tina Royle took time out from their anniversary weekend to drop by.  They braved the craziness of Zingermans on a Spring Saturday to get us brownies.  Seriously, that's dedication and friendship.

It was wonderful seeing all of them, and a great break to the monotony of the hospital.

Then we ventured out into the budding Spring of today.

Today was beautiful.  They disconnected us from the "tubeys" as Amie would call them.  They urged us to take a long walk, and go out and enjoy the weather.

Enjoy we did.  :)

We walked from the hospital to Kerrytown to the Artisan's Market, and then to the Co-Op, and all over the Main Street area to a bunch of different shops.  Ann Arbor Home and Garden to Jazzy Veggie to Espresso Royale to Rock Paper Scissors.  Eventually we decided to head back to the Hospital, and logged our journey at roughly 4 miles and 3.5 hours.

Amie loved the journey, had a great time and I can feel the effects of the sun on our faces.   I cannot possibly explain how much I need the Spring to be here.  I need to get on my bike and ride, take long walks with the kids in a wagon, go on bike rides with the kids in the bike-house chanting "Go Daddy Go", and all other sorts of adventures.

My hibernation of the last 6 months wants to end, and wants to end now.

So.  Mr. Bacteria (it has to be a guy, because ladies would realize it's time to leave and GTFO), please exit my daughter's body so that we can go home and enjoy the rest of Spring Break.

Hope all of you were able to go outside and stand in the sunlight for a few minutes.  It was wonderful in this miserable winter that we've just labored through.

More to come as we know it....  Also, lots of pictures to come...just didn't have access to them for this.

Addendum....  this is the 101st blog post in the series.  I think that deserves some sort of celebration.  Only realized I was that far in the list once I published.

Thursday, March 28, 2013


It's been 11 days since we posted, and for 10.5 of them, we had blissful play, peaceful sleep, and a really amazing homelife.

Then came last night.

I wish I could have recorded the scene as it occurred last night and shown it in a reproductive health class.

Scene:  Jason's Living Room.

  Jason and Amelie are on the couch.  Amelie is shivering, while being wrapped in a blanket in Jason's lap.  Shelley takes Amelie's temperature, and it's 100 degrees.  That's cause to call the hospital.

Shelley calls.  They want us to come in, but stop at Howell St. Joes first to do a blood draw and get a first dose of antibiotics.

Jason picks Amie up, and walks towards the bedroom to put warmer clothes on her for the ride.  Amelie begins to vomit on Jason.  Fountains of vomit that land squarely on his collarbone, and run into his sweater.  Shelley, detesting vomit tries to help but is ordered by Jason to retreat.

Amelie continues to vomit on Jason, for a third...fourth...fifth time.  Amelie looks at Daddy and says, "Daddy...shirt dirty".  She continues to vomit a few more times.  Puke is running down his chest, onto his pants, and even in his underwear.

Jason looks at the camera and says, "Still want a cute little baby?"

Of course to me, this is nothing.  This is minor.  I know that vomit and poop and all the rest of the stuff can be washed off, and therefore doesn't matter at all.  But I bet there'd be some traction with a video like that.  :)

So we went to St. Joe's Howell, and then was moved to Mott via ambulance.  I was dropping Anya off at Grammies, and met them down there afterwards.

They treated us in the ER and moved us to a room on 7E around 12:30am.  I left soon after to set up my classroom the next morning.

Flash forward to today:  Amie's feeling great, but we learn that we have a central line infection.  Apparently the labels on the blood draws from St. Joe's Livingston were jacked, and they don't know WHICH part of the central lines are infected.  We have the port and the two parts of the broviac.  One part is infected, two parts are fine.

We're assuming that the broviac is the problem, and have scheduled its removal for 9am tomorrow morning.

If the labs come back that the port is the problem, we'll have to make some decisions, but sure hoping it isn't that....

So that's where we're at.  If the infection grows, it could get bad.  But we're hoping that tomorrow's surgery to remove the broviac, and then a follow up course of antibiotics will clean everything up.  If not, we'll figure that next part out with the help of the Docs.  :)

Have a great Easter everyone.

Sunday, March 17, 2013

All Quiet on the Homefront

Greetings All,

Firstly, I apologize for the long length of time it's been since I last posted.  Life, Parent-Teacher conferences, and school stuff has derailed me extensively.

A recap of sorts, for those not connected to us on FB.  
  • We got out of the hospital and came home last Sunday, March 10th.  They were very impressed with how well Amie had done with the chemotherapy, and that none of the negative consequences has manifested.  We, of course, loved that too.  I grabbed Anya on the way home, and we had a massive party for everyone.  Amie gave everyone else a thumbs up on the way home.

  • We went into the clinic on Tuesday and got platelets and red blood cells.  It was a long day for all involved, but Amie was in good spirits.  No infections, no side effects.
  • Friday got her platelets again, but no red blood.

As we move forward over the next few weeks, they're keeping with the Tuesday/Friday schedule in clinic, and looking for her blood to stabilize.  

They've asked for us to keep her in seclusion for another 6-9 weeks or so, just to make sure that she doesn't interact with any strange bacteria, fungus or anything else while her immune system rebuilds.

Also, they've roughly scheduled two MRIs for us, one this Tuesday and one in early June.  They're going to keep doing this MRIs as time goes on, and as long as things don't come back, they'll get spread out more and more.

Once we get a little further out, and they're sure we're in the clear, they'll start conversations about removing the Broviac and the original port.  We'd LOVE for the Broviac to be removed, because it's a massively huge pain the butt for Amie on a daily basis....but we're patient people these days.

So for now, we're quiet and we're all good.  Nothing much going on except keeping things simple and letting the girls play together as much as possible.
As a warning of a future event, we're going to do something in June, once we're past MRI #2 (and assuming that will be clear) where we invite people out to Kensington Metropark on a weekend.  We'd love to have anyone/everyone show up and play, ride bikes, go to the petting zoo, and all other sorts of outside fun stuff.  No presents, just a celebration of life, love, support, fun and all that.  No dates chosen right now...just a warning of a plan.

I'll update the blog when there's news, but assume if you don't hear anything that things are quiet, good, boring....perfect.

Tuesday, March 5, 2013

No new pictures, but new news...

Greetings All,

Captain Over-caffeinated reporting for duty here at 11:04pm on Tuesday night, March 5th.

Good news #1 is that we were officially cleared from having C. Diff.  The more we researched it, the more we desperately hoped it wasn't what was causing the poops, and it's not.  The results came back initially that she had antibodies for it, but the conclusive lab tests proved that she does not have it.

To celebrate, Amie and I took some really long, nice walks around the unit today, and have a blast doing so.  There's a lot of hallways around here that intersect.  Every time we reach one, I stop and wait for Amie to tell me where to go.  We did that for about 45 minutes tonight.  It was a blast.

Have I told you about Amie speaking Spanish?  I'm sure I've talked about how little TV she watched prior to last September....and now that we're spending so much time in bed, she's a maniacal little addict.  Much of what she's watching is Diego and Dora.

We were on a stroller ride last week and she said "Daddy....rapido fast Daddy, Rapido!"  I was totally blown away.  She also used "abre"correctly when she asked me to open the door.  Man...the sponge stuff still blows me away the 2nd time.

Good news #2 is that we were told from Dr. Yanik that the plan from here is to wait and see what happens.  We will ride out this hospitalization, and then have an MRI 30 days after the stem cell rescue.  We're currently at Transplant +7 (that's how they refer to it).  At transplant +30 (roughly March 28th), we'll do another MRI to track growth.

Assuming nothing is there, they'll let things chill until Transplant +100.  That is roughly June 10th, finals week for me at school.  They'll do another MRI and make decisions at that point.

As you can imagine, both things are  quite good news.  There's no magic wand in this thing, but it sure looks like we've found a little pile of magic dust.  Just hoping and counting on it not being pocket lint.

Night all.

Sunday, March 3, 2013

Gaining context....

Brain cancer is not good.  I think we can all agree to that.

But ya know what?  There's always something worse.

I was talking to my Assistant Principal the other day and he quoted "The Phantom Menace", Star Wars Episode I.  In general, I hate Episode I, but that's for a different blog (NERD BIAS!).

Anyway, his comment was that "There's always a bigger fish", and it totally made me connect back to so many comments we get from all over.

(I swear to you, if I offend anyone, I really, really don't mean to with any of this)

Amelie has almost no hair right now, and her cranial scars are really, REALLY apparent.  People look at her and wince sometimes.  But then she charms the living hell out of them.  I can't tell you how much she charms them....the nurses line up to be Amie's caregivers.

We know inside of the pool of the damned that we are living in at the moment, that we are at the top of the heap.    She is learning so much so fast, when others have these cognitive delays. She's totally in control of her emotions, when other kids are having really big problems controlling themselves.  We know she's doing badly, compared to all the kids out there...but compared to the kids at Mott, she's doing stellar.  It's this weird juxtaposition.

I could go on and on with my strange mindset that I've found myself in tonight, but I think I'll abscond and just fill y'all in.

Things were doing great as of yesterday, but the inevitable slide has occurred.

Amie went from a white blood cell count of 14, which actually scared them a bit, to below .01 at the moment.  Yep.  that's not much.

She's needed platelets each morning thus far, and red blood once.

They also warned us that this chemo regimen would cause EXPLOSIVE diarrhea, has.  Due to the poops, they have to rule out this massively awful bacterial infection called C. Diff.  To do this, they need to culture the poops, and hold her in seclusion until the culture comes back.  They did that today.

So that means that Amie is locked up again, and Shelley is with her as I move towards school tomorrow morning.

That means that we're once again swearing off visitors (due to the seclusion and the white blood cell counts) for the time being.  Such is life, right?

So we are in the midst of things, and have 9 days down from our projected 28 day stay at Mott for this round.  We'll know more as we go, but things seem to be on the positive side of things, if utterly exhausting.

Hope all is well, and that when we come out the other end of all this, we have some serious Spring weather happening.  :)