Energy EXPLOSION!

Greetings All,

Today was such a different day for Amelie that I felt it necessary to do the first video in a long time to show you.

The standard practice as of late, while we are in the hospital, is for Amelie to be really lethargic, and demand to watch shows on the iPad.

We know we're weird, we know we're different...but we don't believe as a couple that kids need to watch TV.  For under 3 years old, we had decided on no TV at all.  After 3, we believe it should be very, very limited.

But then the cancer happened, and we got launched into a place we didn't expect.  So Amie watches a lot of Netflix shows, specifically Dora, Diego, Kipper and Calliou.  They're all really mild, and slow(ish) paced.....but we have to live with it.  When she doesn't have energy, it's hard to get her to do anything else.

So that leads to today.  I stayed there last night, and she woke up like normal.  She awoke, and immediately demanded DORA!  I changed her and tried to divert, but got no traction.  I relented after 20+ minutes of that, and she watched TV for 2-ish hours.

However, I kept seeing glimmers of energy, as she was playing with her friends (Baby, Pak-Pak and Penguin) quite a bit while she was sitting there.  Usually, she's just a gelatinous blob while she watches TV.

So I gave her a warning that we were going to stop, and then did at the end of that show.  We moved onto the floor and played with Shelley's multi-sensory box for several hours.  Then we went for a walk for another hour.  Then into the playroom after that.  All together she was playing for 4ish hours.

She watched shows for a bit in the middle, and then wanted to play more.  They took us off the IV tubes from 5-9 tonight, which will be a nightly ritual from now on to promote physical movement, and it was great.

She ran and played and kicked balls and threw things at us and carried her "poke-it stick" (a hockey stick) and then went for a massive walk around the ward.

Without a doubt, she had more physical activity and energy today than she did in the last 3 combined.  it was awesome.

The video isn't fantastic by any means, as I was just letting my phone capture it while I played with her.  But it shows how much energy she has.  So surreal that this day arrived in the middle of what was supposed to be the hardest part.  

It gives a bloke a lot of hope, that's for sure.

Hope all is well, and that each of you enjoyed the snowfall last night.

CREAMED CORN!

Greetings All.

I am tired, so this won't be overly long.

I got poked by a photographer friend to take some more "professional" type photos with my DSLR (Cannon 7D), instead of just shooting everything with my iPhone.  Good advice, lazy and overburdened dude.  Here's the pics I shot, or at least the cream as it were.

Those were all shot either Thursday or Friday, before the Chemo started.

As a bit of narrative, for those who aren't connected to us on Facebook, I have a bit more info to share.

We had our MRI last Wednesday.  At the last minute, a former student of mine who works here did a little magic, and got the Friday surgery scheduled in tandem with the Wednesday MRI.  They did both procedures while she was under one anesthetic, and that worked great.

We got the results of the MRI late that night, via email, from Dr. Yanik.  He took the time to email us to let us know that the MRI was once again clean, and that Amie was now officially "In Remission".  We of course are overjoyed at the use of that word.  Not that we're done yet, but it's a nice word.

Friday we admitted to the hospital for the BIG NUKE CHEMO round.  They just hydrated us and gave us rest.  Saturday was the first does of BIG NUKE CHEMO.

Here's how big of a dose/high intensity it was.  We had to change diapers every two hours, for 2 days straight.  We had to give her baths every 6 hours, with vigorous scrubbings.  That was fun at night!

Monday was a day of rest and observation, and today was the stem cell transplant.

They warned us that she would smell due to the chemical preservatives that were used to stabilize the stem cells.  They mentioned that it would smell like creamed corn.  I'd need to talk to Ms. White to see what the specific chemical signature that is being released from her skin, but man.....creamed corn is right.  Super heavy smell of creamed corn in the room right now.  How strange!

The rest of the hospital stay is just like this from now on.  Observe, protect, and treat the symptoms of the BIG NUKE CHEMO as they arise...and they will.

Amie is super lethargic and really grumpy today.  She doesn't want to see anyone, do anything, or even move...just watch Dora.  So that's what she shall do.

I'm going to grab some shuteye for a bit before more people want to poke at her tonight.

Night all!

Observations from the lobby, and MORE!

I've been sitting in the lobby of Mott Children's Hospital for the last two hours.  I was supposed to be grading papers, writing lessons, writing the blog, blah blah blah.  Doing stuff.  I was supposed to be productive, as I wait for Shelley to get to the hospital for the MRI.

But I wasn't productive at all.  I was people watching.

This lobby is such a strange, strange mix of emotions.  Here's a smattering of what I saw these last two hours.

• I see parents waiting for kids in surgery.  For those of you who were long-time blog readers, you'll remember how we talked about this large screen TV that lists the status of surgeries, and how Amie was the first one to get started, and the last one going.....5 months ago now.  I watched those parents worry and talk quietly to each other, like their words, if spoken with enough volume, were going to shatter the calm that they've carefully constructed.  I remember that day, and how we tried to find humor and patience in that waiting process, and having absolutely no idea what kind of kid we were going to have left.
• I see parents walking through the lobby, on the way to the cafe.  These are the parents who are like us, who are on a journey...and have been for a while.  Some have kids with them, others are just couples, others are by themselves.  They have a smile or a frown, but their level of emotion is tempered.  They know the journey is far from over, and maybe a coffee or a muffin will help make today a little better.
• I see parents walking in the door, bursting with child.  They are moments/hours/minutes/days/weeks from giving birth, but they are shooting forth energy and excitement and smiles for the adventure that is about to begin.  
• I see relatives of those pregnant parents come in with gifts  and balloons and other sorts of things that will act as a token of their affection.  They're bursting with hopefulness, but also a little wary because they know that the future adventure doesn't always follow the path that people plan on Pinterest.

(Shelley and Amie arrived, flash forward 60 minutes)

We're now waiting for the MRI, and are waiting in the main waiting room.  Amie is watching Diego and hopefully not thinking about how she hasn't eaten in a while.  She keeps chanting "Bagel! Bagel!" on the way up here from the blood draws, and we just kept acting like she hadn't said anything.  We figure an "ignore" is better than a "no", because the no will bring the "TEARS!".  

As an aside, tears on a kid with no eyelashes, hair and eyebrows are way more pathetic.  They don't pool on the eyelids, they just fly down the face.  There's nothing to catch them.  So, so much more pathetic.  I personally would be willing to impale myself on a spear if it would help her not cry.  Really.  Provide the spear and I'll do it, if you can promise she'd be happy for a year.  Takers?  Guess not.

The MRI today is just to make sure that there's no new tumor growth.  They don't anticipate any, at all. Provided that today goes as expected, they'll do a surgery to implant another port in her chest.  Some of you are thinking, what the heck do they need that for? (I was thinking that too).

Well, right now they can only give her one type of liquid through the port at a time.  If she needs platelets, they give her those, and then red blood cells.  Then IV fluids, meds, or whatever else.  Another port gives them more options.  We like options.

What I've affectionately started calling the BIG NUKE CHEMO (always typed in caps, btw) will start on Saturday.  This will be for an estimated 4 week hospitalization.

Shelley and I debated with how much information to share with y'all that they have told us, and decided there's a lot you don't need to know.  Dr. Yanik said to Shelley yesterday that "If you aren't scared when I'm done telling you this, then I haven't done my job properly."  We'll leave it at that.

Anya is at Grammie and Papa's house, and has been there since Saturday.  It's a good thing that she likes being there, because she's going to be there or at Beth's place for a while.

More details when we have them!

10 years later, in a therapist's office...

Oh, my.

Parents, have you ever had a day where at the end, you're sure that 10 years from now, your kids are going to be talking about the decisions you made that day in a therapists' office?

Yeah, today is that day.

Around 2am, Anya came into our room and said that her head hurt, that she was hot, and wanted to sleep in our room.  She laid on the floor in our room the rest of the night, and was obviously getting sick.

Come morning she had a mild fever, a sore throat, and was starting to sneeze and sniffle.

We know that for Amelie to have any hope at moving along on her treatment, SHE CANNOT GET SICK AGAIN.

So...what do we do?  We punted a kid.

Yep, we punted Anya to Shelley's parents...who were more than willing to have her come over there.

She's not "sick" like most people would consider sick, but she's borderline enough that someone with a compromised immune system is definitely at risk.

Yeah, can totally see her saying that she felt abandoned because her illness wasn't a real illness and we cared less.  But it's the next 4-6 weeks that's going to be more important, so we needed to call this one for Amie.

Ugh!

On a positive note, we got a call last night from Dr. Robertson, who apologized for the mix-up with the MRI on Wednesday.  She said that she had pre-authorized them to do the MRI with the recent illness, but the person who needed to hear that didn't, and it got cancelled.  They're going to flex their muscles and get her an MRI this Wednesday.

Dr. Yanik (he's the oncologist who focuses on bone marrow/stem cell issues) is ready for us to do an appt. on Tuesday, and said to expect for the whole shebang to start by the weekend.




...and man does Amelie act differently when Anya's not around.  She's chatty!  Normally, Anya talks constantly...and I mean does not stop talking for hours at a time.  Amie is more of  a fun assistant to her.  When Anya's not around, Amie is just chatting away, and is a really funny kid.

Night All!

Oh, yeah. The blog!

The blog kinda got away from me again, so I'm going to do some recapping of the last week.

Last Friday just happened to be a snow day, so I was able to go w/ Shel and Amie to the hospital to help, and to see what it looked like to film the Make a Wish video.  We got to meet with a bunch of other kids who are in treatment, and chatted for a bit with Lloyd Carr, former coach at U-M.

The small world thing is that he used to teach at Belleville High School, and was a coach there back in the beginning of his career.  I mentioned my connection to belleville and he was eager to chat about the new school, and his desire to see the new facilities.

The video shoot went well, and I picked up competing arm bands for the spirit of it all.  My heart is still with MSU, due to going to school there, but Mott and U-M have done soooooo much for us thus far that I have to give them serious cred in my loyalties.

I included the above two pictures just to show y'all how much hair she's lost thus far.  She definitely has the mad scientist look going on most days.  She reminds me of people with bad comb-overs who just need to shave their heads.  Not nice, I know, but my truth.  :)

It just boggles my mind how good of a sport Amie is with getting her port accessed.  Can you even imagine having a needle semi-permanently sticking into a part of your body, and being alright with that?  As you can see by the redness, the tape is far more of an annoyance.  They tape it all up to keep it as germ free as possible.

We are so gansta, so thug.

When Amie went to the video shoot, they gave her a gift of dress up shoes, jewelry and a purse.  She had no real desire to put on the earrings, but Anya did.  Why do earrings make kids look so much more grown up?

A big shout out to Aidan and Sophie Delfuoco for giving Anya (and eventually Amie) a GIANT popup book from Richard Scarry.  His Busytown stuff is a massive favorite of Anya.  As you can see on her face, she was exploding with happiness to check it out, and spent several hours with it thus far.

Are you on Pinterest?  If not, why not?

You could be doing someone's hair in these amazing heart shapes!  

Stop doing other things, and start pinning!

I'm not sure what it is about this picture, but it doubles Anya's age.

So today was SUPPOSED to be our MRI.  They have been doing a series of tests to make sure that Amie's body is ready for the rigor of the stem cell rescue that is coming.  They did a kidney test last week.  Today was the echo cardiogram to look at her heart.  Amie handled it about 90% awesome.  The 10% sucked was when we had to hold her down at this really awkward angle so that they could see where the port accessed a major artery in her chest, to make sure there was no damage.  That was fun!

We went up to the infusion clinic to get her blood numbers, and found that she's holding her own at the moment, and didn't need any blood.  They de-accessed her so she could take a bath tonight, and sent us home.  As we were walking out the door, they told us to stop by the family center because there were some friends there.

Amie was TERRIFIED...and warmed up a bit before we left.  She had no real interest in touching them, and wouldn't even high five them...but she wanted to watch them for quite a bit.

So that's the very logistical rundown of our last week.  We were supposed to be marching towards round 6 and the stem cell rescue, but we're currently in limbo.  We have an appointment with Dr. Yanik on Tuesday, and should know more then.

Tonight?  What are we doing for Valentines Day?  

We are getting an impromptu Date courtesy of Mr. and Mrs. Adler.  I'm writing this from a place in Ferndale while Shelley shops.  We just had an amazing Thai lunch/dinner, and we are going to catch one of the last movies for the Oscars that we haven't seen yet, Beasts of the Southern Wild.  Looking forward to it big time!

Hope all is well with each of you!

Let's have a party for the Garzas!

Have I told all of you how awesome my sister and her family are?

No?

Really?

Let's talk about that for a bit tonight.

I posted this picture on Friday to Facebook, and it started our weekend journey:

This was roughly 4pm on Friday afternoon.  I had called my sister to ask if she had any interest in taking Anya for the weekend, so that Anya could have some fun and see Charlie and Allyssa.  Not only did she take her, but she met us up at the hospital almost at the same time as we got there, so that Anya didn't have to hang with us in the small hospital room.  

They noticed that she had a ton of extra energy, so they took her to Southland Mall (they live in Riverview...Downriver!), and let her play at the bouncy place to burn off that extra energy.

Busytown Adventures are her favorite for a long time, and seeing Lowly totally made her day.

Allyssa, of course, is a helluva great big sister for Anya.  She let's her sleep with her, and helps her have fun over there.  They provide amazing fun for her, and really help shelter her from the madness of all of this.

They have a membership to the Romulus Athletic Club, the RAC, and wanted to take Anya.  We didn't send a bathing suit, because, well....it's 10 degrees outside and we don't get to the pool much.  So, Noe (brother-in-law extraordinaire) ran out and went to the store to buy one....and scored a Dora one too.  Amelie will grow into it and love the crap out of that too.  More points!

So that was this weekend.

Now on to today.  I convinced Shelley to let my sister come up there to help for a little bit, as she was already in Ann Arbor.  She hadn't been OUT OF THE ROOM in days.  So Beth came up there, and brought Amie a ton of stuff.

Look how stinking happy this little girl is!  She's shooting glitter out of her eyesockets she's so happy.  She's been trapped in a hospital room with no walks, no playroom, no anything...and she's that happy.

...and Beth watched Amelie while Shelley and I went to Whole Foods (Eisenhower, not Washtenaw).  We saw Ms. Briley (go Linnie!) who had led a fundraiser for us there, and we had some noodles (and Shelley a glass of wine), and it was great.  It seemed to be just what Shel needed.  She bought some stuff to make the hospital stays easier, and relaxed a bit.

On the whole, it was a great day.  I'm staying down in Belleville, and got a bunch of lesson planning done for the GT class.  

Amie did not present a fever all day (woo!) and her WBC (white blood cell) count was up to .2 from .01 the previous day.  I'm totally game for a 20x growth in one day! Woo!  Good stuff!

Time for bed.  Night all!

Who needs an immune system? (Apparently, Amie does.)

Oh, what a germ filled weekend we have had!

Friday was our 10 year blind date anniversary, as I stated in my last post.  I'd worked out a way for Shelley and I to spend 2 days away from everything, and have a DATE!  Not just a date, but a DATE!

Apparently, the Universe chuckled at that idea.  oh, presumptuous petty humans!  You made plans! Muahaha.

With all that said, Amie got sick on Friday morning with a mild fever, and it has just accelerated since then.  In that same time span, the massive sneezy head cold that I had at the beginning of last week has totally recouped and attacked again.

Those of you who are taking notes can now see that Shelley's been at the hospital for 2 days by herself.  Whee.  But that's getting ahead of ourselves.

At this point, after lots of antibiotics and no reaction from them, they've decided that she has RSV.  We had known what this was because Anya, in her preemie days, got a $1200 a month shot to help her avoid getting RSV for the first 6 months of her life.  I believe the drug was called Synagis.

So Amie has RSV, and it's really not good, but it's not horrible either.  It just has to work itself out of her, with the suppressed immune system that she has.

In order to get out of the hospital, she has to have the following:

• 48 hours without a fever.  (she had a 103 fever this afternoon)
• Blood cultures back without bacterial infections (they check daily)
• White blood count at 500 (it's currently less than .01.  Yes, you read that correctly)

I don't know if I got her sick, if Anya got her sick, or if it just popped from somewhere else, but she's going to be at Mott for a bit, and most likely through the week.

EVEN BETTER, I can't be there until I am well, and she's on lockdown procedures meaning that Shelley can't leave the room (or else she might get something on her) and people can't visit her.   

I'm thinking that Shelley is in lockup, and she's ticked off the guards.  She's got a really, really cute cell-mate though.  She says that having Amie there is great though.

I've been at home for two days trying to get better, drinking tons of fluids and watching tons of episodes of The West Wing (I'm ending Season 4 right now).  The quality is definitely sinking from Seasons 1-3, but I'm OK with it.  

Anya is at Grammie's for the week, so any of y'all who know where that's at and want to visit, feel free. 

I'm off to finish up lesson planning for tomorrow!  Night All!

The Story of Shelley and Jason

I'll start off this post by saying that there's going to be no information whatsoever about Amelie in this post. I will do a 2nd post after this one, and post pertinent information in that.








Still there?  Ok, here is the story of Shelley and Jason.

Yesterday was not our 10 year anniversary, that will be on June 26th, 2014.  We still have a little bit until that fortuitous date.  Yesterday was the 10 year anniversary of our blind date.

I'm going to state upfront that this entire post is MY recollection of what happened on that date.  This is NOT Shelley's recollection, therefore I'm right, and she's wrong, and she's the one who misspoke, and I'm not the one who misheard, and therefore I am right.  Got it there, Knittergirl?  History is written by the winners, and I guess by having a blog with MILLIONS of readers, I'm the winner. (did I overstate that a bit?  Never.)

So I went to Michigan State University, and I knew this girl named Sarah. (1993/1994-ish). We went to a few concerts together, and then fell out of touch for one reason or another.  Fast forward 7 years.

I bump into Sarah in Ann Arbor, and she's married, and I've just gotten divorced.  Sarah's husband doesn't particularly like watching 'chick flicks' and he sends her out to see them with me.  We do so every once in a while, and we go out and have a drink and talk afterwards.  We talk alot, as we're both massively extroverted. We talk about relationships, positive ones we can look up to, and all other sorts of stuff.  She's good peeps.

Over the next 2 years, Sarah and I exchange many emails, and watch some movies, and she is the person I explain all my TERRIBLE mistakes I make getting back into the dating pool.  There's still one person who I treated so bad that she'd rather I never talk to her again.  I still feel really bad about that, but how do you change the past?  You don't.  You just make sure you don't do the same thing again.

So in the late summer/fall of 2002, Sarah tells me that this woman just started working at her agency, and that she's absolutely perfect for me.  BUT..... she's not going to introduce me to her because I "need to get my shit together".  (Pardon the language, but I felt it appropriate)  She was totally right.  I did.  But she did promise to set us up once she was sure that I was ready.

In January of 2003, Sarah passed my email address along to this winsome lass named Shelley.  As a bit of background, when she did this, I was at the busiest point of my entire life.  I was working for WNEM in Saginaw full time (usually 45-60 hrs a week) and taking classes to be a teacher (18 credits at EMU, and another 6 at Mott Community College).  Yeah, do that math.

Shelley and I started emailing back and forth, and after a few weeks of getting to know you emails, settled on February 1st as a blind date.  I asked her to meet me at the Blue Nile Ethiopian Restaurant....because it was a total test.  I admit it now, and it was a jerky thing to do, but I figured if she couldn't handle trying Ethiopian food with me, she wasn't going to be my kinda girl anyway.

She did meet me (roughly 4p), loved the food, and enjoyed the framed picture I brought for her of a sunset off Mission Point north of Traverse City.  We talked for nearly 4 hours.  We were at a table just to the left of the door when you walk in.  It's a great place to sit.  :)

After we got done talking there, I asked her a very specific question, and one in which I was paying very close attention to her answer.  I asked her if she wanted to go grab a drink somewhere to keep talking.  She said she'd love to.  I said, "Do you prefer beer or wine?"  She said "I prefer beer."   I had worked out that I needed two places ready to go, within walking distance.  We were going to go to Palio on Main St. for wine, or the Arbor Brewing Company for beer.  I was ready for both.

So she said beer, so  we head to Arbor Brewing Company, a block away.  She acts really strange the entire time we're there, a total change from how she was acting when we were at Blue Nile.  I'm totally confused.  We talk about beer choices, and she is really hesitant to drink anything that's really beer-y.  I am confused!  SHE SAID BEER!  We order beers, I'm trying to roll with it.  She drinks maybe half, and then we leave.  

I ask her if she wants some coffee and dessert.  She loves the idea, and there's this little Eastern European place called Amadeus that's right next to Arbor Brewing.  We go in there, it's a great time, and we close the place talking.  Its' probably near midnight at this point, and most things are closing, and I totally want to stay away from the alcohol thing again, so we start walking.

So we walk, and talk, and walk and talk, and somewhere after 2am, maybe as late as 3am, we say goodbye.

I send Sarah an email, and tell her that I'll marry Shelley if I don't f**k it up.  The date was that good.  Sarah responds that of course it was, and that of course I will, and she knew that all along, and that's why she didn't let me talk to her until I was ready.

We got engaged 7 months later, and then married 8 months after that.

So last night was the anniversary of that first blind date.  I could include a LOT more details, like how I blurted out at the Blue Nile that I both had a really large tattoo (totally not large for 2013's standards, but large for 2003's) on my back, and that I was divorced, and that if either of those were dealbreakers I'd understand.

I could talk about how fast I talked, and how she said I was a totally anxious whirlwind that first night.  Or how I got cold at the end of the night and grabbed my fleece out of my car, which I had promised Sarah would NOT make an appearance on this date.  I love this fleece, and I still have it.  But it is horrendous, and needs to be immortalized in pictures, yet I have none that I know about.  I'll do so for a future post.

What I'm really trying to say here is that I did not have my shit together, as Ms. Sarah said....but Shelley saw something worth......refining, and decided to dig a little deeper.  She's been refining and digging for 10 years now.

To quote a note that Shelley wrote to me, and is now laminated and on my classroom wall,
"There is no one else that I'd rather fight this fight with, or for."

I'd say ditto, but then I'd be making a bad reference to Ghost, and I never did much like Patrick Swayze movies.

So I'll totally agree with her, and say that there's no one that I could think could handle a diagnosis and treatment for Medulloblastoma better than she. If I can just keep her together as she keeps everyone else together, then I've done my job, and a damned good job it was to do.

Another post later if the stars align!