Monday, January 28, 2013

Off to Camp!

To all future bloggers out there:  You know when it's been too long since your last post? When you start getting the emails asking if you are alright out there.  Point taken!

I last posted on Monday, 7 days ago, and we were looking to check into Mott on Wednesday, which we did.  As we had the last time, the chemo was a breeze, and she didn't get sick even once in the hospital.  Amelie really and truly doesn't mind going into the hospital, and how could she?  She only gets poked once the entire time she's there.  She gets 1 on 1 time with Mommy or Daddy, she has all these fun people come visit her, and she gets to watch a ton of Dora/Calliou/Diego.  What's not to like about all of that?  Seriously people!

Of course, more than anything, that's a testament to how we keep all the emotion of what's going on away from Amelie.  A parent told me this week that they couldn't believe how strong Shelley and I were in the face of all of this.  I thought to myself that I really don't remember being given a choice in the matter.  Amelie only knows the emotions we give her.  If we are strong, so is she.  If we are fearful, she'll learn to be fearful too.  

An extra bit of goodness in this round was that they accelerated the chemo regimen.  Instead of waiting 24 hours before starting doses, they moved to 18 hours.  Over the three days, and with the knowledge that we were extra diligent with the at-home IV fluids she's on at night, they let us go super early.  We checked into the hospital on Wednesday morning, and were home on Friday night.

Speaking of Friday, that's also when Anya left for the Special Days Winter Camp.  We had heard about this from Jennie in Child Life at Mott, and checked into it.  It seemed to be a great thing, and they allayed our fears about sending her to a camp by herself.  Anya had no such fears.  None whatsoever.

Grammie and Papa dropped her off on Friday afternoon at the Sheraton in Ann Arbor.  It was a 3+ hour bus ride to an area north of Muskegon, and she was looking forward to the bus ride more than anything else.

So, getting out of the hospital on Friday night, and having Anya gone for camp made for lots of really relaxed play time with Amie.  Not that Anya is bad or anything, but her play pacing is really, really hectic.  Not at all like what Amie's pacing is when she's by herself.  She's been asking to watch us use the bathroom lately, and now she's been asking to spend some private time on the potty with a a certain someone else.

Amie broke into Anya's dress up stuff too, and was enjoying a pair of Yit-Yit's glasses.

She also got to curl up in Mommy and Daddy's bed with Icey and Baby and enjoy some shows.

(I spent the last 15 minutes trying to get the pictures on the blog, but they're semi-protected, so I just dropped the link for those of you who want to check out the camp in progress)

Anya had to be picked up in Ann Arbor on Sunday, so we made a day of it.  We grabbed good food, went shopping in Kerrytown, and then headed to the Sheraton to pick up Anya.  The girls had made a sign for Anya, and it was really cool to see how happy both girls were to see each other.  Shelley and I were an afterthought, which is what we love about the way they play together.

It's been a great week thus far.  Both girls are in high spirits, Shel and I are both rested as we can be.

Speaking of rested, today is a snow-day for me.  I was 45 minutes into the drive into work in the hellacious conditions, but we hadn't called off, so I had to head in.  I got the call near 5:50a, and headed home.  I got there at 6:30a to find everyone waking up.  I requested the right to get some sleep, as I was exhausted and wanted to get a little more rest.  Of course, with the terrible way I treat my body most weeks, I slept for over 4 hours, and woke up to little gremlins planning a surprise for me.

This was on the bedroom door as I emerged.

A little closer.

One more.

So there ya go.  A massive post about what's going on.  Amelie has no eyebrows left, no eyelashes either.  It gives her a very serious look on her face, somehow.  All part of the process, I guess.  :)

Shelley is working on a massive blog post that details what she goes through, with a ton of pictures, on a day at the hospital.  Her mom came up on 1/11 and took all the pictures, and we now have them on our home hard drive to work with.  Expect that within a few days, for those of you who want to know more about the thrice weekly blood draws and transfusions.

Hope all is well with each and every one of you!


IMG_0383 by thombrooks
IMG_0383, a photo by thombrooks on Flickr.

Monday, January 21, 2013

75,000 - What the heck.....?

Greetings All!

It was a long weekend for me, and a whole lot of time playing with the kids.  Also, I took some time to go through all the various electronic devices that take pictures, and sort through the mess.  I had several hundred pics to wade through, so there's going to be a bit of a gallery of pics in this post.

First up is this picture of Amelie.  It looks like a still from a reshoot from The Shining, or some other similar horror movie.  What it actually is not quite that.  Amelie and Anya have a "little girl table" that was built for Shelley by her father when she was a kid.  The girls play with it in the living room often, and Amie was sitting underneath it.  She looks freaking terrified, but that's just one of the more extreme expressions she likes to sport.

This is part of the photo wall at 7E Mott.  I detailed a long time ago how amazed we are at it, and what it means to us to walk in and feel like we're part of a community, and not so amazingly alone in this experience.  

We get so much love and care from so many people, but when you're walking the halls at 2am here, it's just a collection of ghosts.  So there's times where I walk down and look at the picture of Amelie and all these other kids who have struggled with similar experiences, and it makes me feel like there's a whole lot of people in this boat, or at least there's a whole lot of boats aiming in the same direction.

So that leads us to this particular picture.  They added a TON more pictures in the last month (easily doubling more maybe tripling the pics) and Laurence's picture was in the mix.  This is the young man who donated his brain to research in his teenage years when he heard his diagnosis, and the prognosis for treatment.

I can't really put it into words accurately why his story affects me so damned much, but it does.  I totally  teared up again today seeing it, seeing Amie's picture just down the road, and thinking how amazingly powerful this kid's will and vision and belief in the overall good of humanity was....the same things that are really shaken in me so often in the last year.  Anyway, wanted to share the pic, and remind you (and me) that there are visionaries out there who see past all the hate and distrust to invest...invest in each other and in the future of us.

This is a picture of my Dad, and was on a device that Anya uses to take pictures.  I loved it, because it's insane.

Shelley bought Amie a balance board to play with for Christmas.  We were a bit worried about her ability to use it, but thought it might have great play/therapeutic value.  Amie has LOVED it, but always says that she feels a bit "tippy" when she's using it.  That's her word for lacking overall balance.  That's something she's going to battle the rest of her life.  Quoting the neurosurgeon, the balance beam is never going to be her friend.

Our friend Sarah took this for us, a few weeks back.  She was dropping off food from CMH (Shel's former co-workers), and we were talking at the bottom of the stairs.  I thought it was a great picture, and really showcased how decent things are going with all of us right now.  

The girls have been playing so well most days lately.  In their matching homemade Hello Kitty aprons (Thanks Grammie!), they play so many games with food and restaurants, and cooking.  They love it.

This, my friends, is me at my sexiest.  More suave than Daniel Craig, that's me.

This is an explosion of Scrunchy Face.  It has hit epidemic levels.

...and this is a Scrunchy Face so scrunchy that it seems as though it has swallowed her face.

Amie's numbers were good enough that they didn't need to transfuse today, so we're on track for a Wednesday admit to Mott for Round 5 of Chemo.  That puts us into the hospital on Wednesday and out (in theory) on Saturday night.

One last thing...with this post we'll probably cross 75,000 pageviews.  That is so beyond crazy to me.  For all of you who are still hanging in there and interested in finding out about this crazy adventure we're on, I say thanks.  You're a great audience, and I love sending out these little bottles full of messages.  Thanks for helping me process, helping me inform, and wanting to know about this little bundle of awesome.


Saturday, January 19, 2013

Updates! Updates! Plans! Happiness!

What a great week, and a scary week too.

Let's detail the good stuff.  First a little background.

Most people that I consider "friends", who I talk to on a daily basis are women.  Maybe this is because I don't watch sports, don't eat meat, don't care about cars, have no idea how to fix basically anything, don't hunt, don't fish, don't cook meat, don't have a lawn to mow, don't drive motorbikes/snowmobiles/boats, don't have any powertools or basically do anything that 90% of the males in this country focus their energies on.

So, the one guy who I can hang out with for hours and hours and talk movies and all other types of stuff without delay used to work across the hall from me.  Then he had the gall an audacity to move to freaking New Zealand <yea, everything is about me apparently.  :) >.  Anyway, he was back in town and we got to hang out a few times, and saw a movie this week and grabbed dinner afterwards.  That was awesome. < Zero Dark Thirty was the movie, btw.>  Great conversation, a good meal, several tasty beverages, and all on a school night.  It was a great night indeed.

Also, I was given permission to switch my schedule around a little bit for 2nd semester, and I'm going to be teaching the Gifted and Talented Students for 8th grade social studies.  I am BEYOND excited for this switch.  (For those of you who read this whose students are in that group, I hope I will do you proud).

I've really been struggling this year teaching this group of students I had 1st semester.  In all previous years, I taught groups of students who were across the spectrum of ability and interest.  I had the kids who really struggled and were apathetic, and then groups of kids who truly loved learning and were beyond curious about all things.  Dealing with the kids who are bursting with curiosity makes it easier to wage war against apathy.  Also, when you have the full spectrum of kids in class, it offers a peer group who acts as a role model, and often inspires some borderline students to get a bit more connected to class.

I also got to go and have a great lunch with my co-workers yesterday to celebrate the end of the semester, and my successful completion of one year as a middle school teacher.  I must say it was as hard, or harder, than my first year as a high school teacher.  Middle school is definitely harder, without.a.doubt.

So...  there's a bunch more I could write about, but y'all are bored by now.

But there's also some scary stuff too.

Anya was sick last Saturday and Sunday, and we thought it was just a cold.  It got worse into Monday, and we kept her home from school.  Same with Wednesday.  We just figured it was a big old chest cold virus that was kicking her butt. (no use in going to the Doctor, it's just a virus, and we're already keeping her hydrated) The cough got worse on Wednesday, so we took her to the Doctor on Thursday.

Yawp.  She has pneumonia.  Not a baby case either.  Soooooo.....  we've been doing our best to keep the girls from sharing any germs, but with Amelie's decreased immune system, it's bound to jump at some point.  She's coughed a few times this morning already, so I think the gestation of that particular bug is about to come home to roost.

Amie's blood numbers (platelets and red blood) are also really low.  She was supposed to start round 5 of chemotherapy on Wednesday, but that didn't happen.  They checked her numbers on Friday, and say that they are hoping she'll be ready to go by Wednesday, but can't guarantee anything.

They've also scheduled another MRI for Valentines Day (2/14).  Their view is that they want to see if everything is the same after two rounds of Carboplatin and no Vincristine.  If it looks good after round 5 with the current regimen, they'll go ahead and do the 6th round with the stem cell rescue as planned.  If things don't look good, they'll sit down and talk about next steps.

Lots of good stuff, some not so good stuff.

As a co-worker said this week, there's lots of people who have it worse.  :)

Hope all is well with you and yours!

Wednesday, January 16, 2013

Heeeerrrrrrrrreeeee's Shelley!

Hi All, It's Shelley this time around.  

We'd hoped that Amie's blood counts would be good enough for her to be admitted today for her 5th round of chemo.  Unfortunately, they were not, and they'd gone down since Monday instead of up, so we are back for another blood draw on Friday to make sure she doesn't need any transfusions.  Our new target date for admit is next Wed.  

Amie is doing great.  As we said before she's been eating with gusto and her weight today was up to 27lbs!  Her energy is really good and she is back to playing all day long and just enjoying being a kid.  She's still at little "tippy" as she says, but otherwise right now is the closest she has been to before she had the surgery.  

We also had another audiology appointment today and the results remained the same, as we expected they would, since they changed the chemo drug that was causing the hearing loss for round 4 of chemo.  Amie has minimal hearing loss of high tones not needed for speech in her left ear.  

So that leaves us with this next week to enjoy having Amie full of energy and fun.  I've got ice cream for breakfast, lots of crafts, some playing and just being silly on my calendar.

Saturday, January 12, 2013

Everyone's looking for the same thing...

Yes, yes....  I know that I need to write more.  

I know that I need to take the time to do it, especially when we start getting emails inquiring how things are going.

....and REALLY especially when I get guilt-laden calls from the parental units letting me know that a lack of information is not an indication that things are going well, and is not appreciated.

Point taken.

So. Things are going splendidly.  Amelie is eating like an elephant that is recently freed from a famine plagued area.  She is eating buckets of things.  She asks for her first meal approximately 15 seconds after you get her out of her crib.  

Me:  Hi Amie.
Amie:  Daddy!
(2 second pause)
Amie:  Noo-Noos, Daddy. Noo-Noos.  Sauce on.  Cheese on.  Heat up.  Beep Beep.  Mikoway.  
            Done.  Amie cheese on.  Noo-Noos, Daddy.  Noo-Noos.
Me:  Ok, Amie.  Let's get you some noodles.
Amie:  Sauce on?
Me:  Yes, Amelie.  I'll put your sauce on it.
Amie:  Cheese on?  Amie put cheese on?

Now imagine this conversation goes on for roughly 90 minutes, with her commenting on the speed and efficiency with which you are making said food....and then critiquing the food itself....and requesting more.  And requesting ice cream.  And more ice cream.

So yeah, she's eating well.  She bottomed out at 24.4# and is now at 26.8.  Woo!  

Shelley and I went grocery shopping today (thanks parents for watching the kids!) and specifically bought the most fattening popcorn and ice cream for the girls.  I'd say for Amelie, but we can all admit that if we don't give it to Anya she's going to lose her poop.  So it's for the girls.

Medical wise, the change in chemo is doing great stuff for us at home.   As I mentioned, she's eating like crazy (we've been told that's the difference between the Cisplatin/Carboplatin), and her energy is OVERWHELMINGLY increased.  For the last two days, she had her boots on and was playing outside in the mud/muck/snow/sludge that is the common area in front of our condo.  Compared to the girl who sat on our laps for 2 weeks straight, it's amazing.

They're aiming towards admitting us in the hospital this week for round 5 of Chemo, but it all depends on platelet levels.  As they warned us, the carboplatin is really hard on the blood, so she's gotten red blood cells twice, and platelets twice, in the last 10 days.  That's way more than normal.  But you'd never guess it by the way she's acting.  Her platelet levels have to be at 100 on Monday for them to schedule the admit for Wednesday.  They were below 50 on Friday, which is the level for transfusion.  so who knows, but it doesn't look likely.

Not much else going on around here.  I had my student teacher start this week (which is a LOT more work for me in the short term, but should be less work for me in the long term), and Shelley took down the Christmas tree.

We went and saw the movie "The Impossible" today when we were on our date, and it was very good.  It's about the 2004 Tsunami in SE Asia.  There's several personal connections to our world, and it was good to have something to focus upon outside of our lives.  The tsunami hit when I was in my 1st year of teaching, and I remember talking about it often in class.  Shelley also spent 12 weeks in Thailand during and after her Peace Corps time, and talked extensively about how kind and generous the Thai people were.  We both really want to travel there, and possibly live there one day.  Seeing the devastation of the tsunami, and the level to which people struggle to survive in the face of adversity is always a good thing.

Shelley made the comment as we were walking out that it was great to see yet another example of how we are all connected, on how we are all human beings who seek the same things.  I totally agreed....and thought that the above quote really said the same thing in a different way.

This is a tie that a co-worker (thanks, Amy!) gave to me this week.  It was a pic that she ripped off the blog/facebook and used to make the tie.  The cool thing (above how cool the tie is) is that I was already wearing a purple dress shirt, so it totally matched.  The kids in the classes really dug the tie.  Woo!

Amelie is silly.  I do crazy stuff like put garbage baskets on my head.  Now she does it.  I love that I've corrupted her.

Shelley and I went shopping for glasses for her.  Here are her two final choices:

The above picture is MY favorite choice.  It has a lime green inside, which you can occasionally see when she turns her head off a straight on look.  They are the BEST.

Here are the 2nd choice.  They are fancy on the sides, and purple-y in front.  They are totally fine.  But they lack the panache and style of the first pair.

Shelley needs to know what you think.  Feel free to email her...especially if you want to tell her how rocking she looks in the first pair.  :)

I love this picture so much.  Thought it was a great way to end the post.  Night Night!

Saturday, January 5, 2013

Nom Nom Nom...

Are there things in your life that are really good that you don't want to talk about, don't want to reference, don't want to jinx?

Yeah, for the last 10 days, we've been in the middle of one of those periods, and we didn't want to talk about it until we were really sure that it is was really happening.  Well, it has, and I'll now trumpet it.

Amelie is eating again, and is eating way, way more than she normally would.  This is, of course, a good thing.  We're attributing it to the change in the chemo regimen that happened when we went in last week.

So, a bit of history.  Rounds 1-3 Amelie was given doses of Etopicide, Cisplatin, Vincristine and Cytoxan.  She was given them in varying amounts for 3 days, and then hydration for one, and then sent us home.

Amelie was then given booster doses of Vincristine at the infusion clinic on Wednesdays as well.

Once the chemo started in round 1, she pretty much lost all her appetite.  She was ingesting maybe 100 calories a day from the small bites she was eating.  As you can imagine, she's lost a lot of weight.

Round 4 saw two switches in the chemo regimen.  They stopped giving her vincristine totally, and switched the Cisplatin for Carboplatin.  But actually, they had stopped giving her the updates of Vincristine a bit before that, so her appetite returned for real on Christmas Day.

So, throughout the entire hospital stay last week, she ate.  She came home, and she ate.

How much are we talking about?  Here's what she's eaten today, in order of what she's eaten:


  • 1.5 cups of cooked pasta with spaghetti sauce, liberally sprinkled with fresh parmesan.
  • 6 mini-tater tots.
  • 1 scoop ultra-scoop ice cream
  • 2 cups of cooked pasta with spaghetti sauce, liberally sprinkled with fresh parmesan.

  • 1 cup Kraft Mac and Cheese made with Half and Half and a LOT of butter.
  • .25 scoop ultra-good ice cream.
  • Several Handfuls of popcorn
  • Several handfuls of animal crackers
  • 1/2 cup milk
Now I imagine that some of you are saying that it isn't that much, but the above list of food was more than she ate for the entire month of November.  Shelley will say that I'm exaggerating (as she claims I'm prone to do....whatever.), but its so shocking to us.

She has gained a full pound in a full week.  Now, once again, some of you are going to say...who cares.  At diagnosis, she was nearly 29 lbs.  Her lowest point was her at 24.4 lbs.  She weighed in at 25.6 the other day.

So....we can keep doing what we're doing, hopefully, and avoid the specter of the feeding tube.  At least for now.

yay for eating!

There's a ton more I need to write about, but I'm really enjoying doing nothing for this break.  School starts back on Monday, and so does my discipline.  

For now?