Saturday, November 22, 2014

The final product!

Greetings All!

Before I get into the meaty substance of this post, I will warn you loyal readers that there’s a few details in this post that are a bit…  much.  You’ll see when you get to them.  If you’d rather stay warm and fuzzy, you might want to skip this post.

But of course, you clicked through voluntarily….to a blog about a family that’s taking care of a kid who is dying, albeit gloriously and happily.  So.  You probably weren’t looking for warm and fuzzy, but Real.  True.  Honest.  I’ll do my part on all three.

People keep emailing us, calling us, texting us, FB messaging us (my, my…we have so many ways to communicate these days, and I’m not even listing them all!) and wanting to know “How are you doing?”  My response to each of those queries is the same, we’re as good as can be, given everything going on.

…and we are.  Really.

I can’t speak for Shelley, but I’m profoundly unhinged right now, unmoored.  Adrift.

For the past two+ years, I’ve had a schedule, a structure.  I take care of my girls, then I go to work and take care of my kids.  Work, home, work, home, rest.  It has a pace and a structure that are exhausting, yet profoundly comforting.  It gave me a constant source of positive/affective support that I could count on daily.

Now that I’m not working, and don’t have that…  it’s profoundly unsettling in some weird ways.  That’s not to say that I don’t enjoy the living crap out of being home every day with Amie, making videos, making her smile, cuddling her to sleep most naps and nights.  I do.  It’s the stuff of legend.  But that’s the entire kit and caboodle right now, and my brain doesn’t have much else to focus on…but death, dying, survival, and the process of the previous three.

As a total aside, I have no idea how Shelley has done this for the past 2+ years.  She quit her job immediately after diagnosis in September 2012.  (To be precise:  she went on FMLA, and then quit when her time to come back to work came due, but I digress). This has been her whole life, for the past 26 months, and I’m not altogether sure I could have done what she has done.  Moving along…

Being at home each day, in some weird way, is this weird waiting game. We know she’s going to die, but we have no idea when.  I find myself, at times when I’m off in my own head, thinking about life after cancer.  Thinking about what possibilities are going to be there for us as a family to travel again, to live again….without being tethered to cancer treatments.  I barely even remember what the hell that feels like.  

But then I immediately snap back and feel really crappy for thinking that, because in a sense I’m looking forward to her death in having those thoughts.  But then again, having those thoughts is completely normal, wishing to have the life back that was taken from you.  It’s…surreal.

We’ve gotten a lot of inquiries into people wanting to set up times to come visit us…a lot of them.  We’ve quietly declined most of them, and we wanted to kind of explain what Amie’s days look like, so that you can see why most of the time, bringing people into her life right now is really hard, and not so practical:

5am - 7am:  Amie starts coughing.  This is not a normal cough.  It’s a profoundly unsettling cough.  It’s a “grandpa who smoked for 40 years” cough.  She starts coughing, and you can hear her fighting to get a breath back at times.  She does this for several hours each morning, as she’s getting close to waking up.  

Marsha has listened to her lungs several times, and says they are clear, so it’s not pneumonia developing.  Dr. Robertson said that for people on such intense regimens of radiation, they can sometimes have bits of tissue and fluid leaking from their lungs which come loose and cause coughing like this.  She just needs to work through it.  

I cannot explain to you how awful it is to hear your 4-year old daughter have emphysemic coughing jags.

7am:  Amie wakes up.  Many mornings she wakes up in a massive pool of her own urine.  We have no idea why she’s not going to the bathroom during the day.  We take her multiple times a day and have her sit on the toilet.  Most of the time she says that she doesn’t need to go.

7:01am - 10:30a:  This is Amie’s prime-time. She’s energetic, funny, alive, and wanting to play/craft/interact.  We are not sending Anya to school in the mornings right now to take advantage of this time.

10:30a - 12:00p:  Sometime in this magical window, Amie fades. She starts getting grumpy, touchy, and overall wanting nothing to do with people.  That means it’s time for snuggle time, and then a nap.

11a:  Anya goes to school.  Usually I take her.

11:30a - 2:00p:  Amie is sleeping.  Hardcore sleeping.  Once she wakes up, she’s not overly energetic…but she’s awake.  She might do a little crafting, or maybe just snuggle on the couch.

3p: Shelley heads to the hospital to get radiation with Amie.

4:15p: I pick up Anya from school.

5:30:  Shelley and Amie get home from radiation at Mott.

6p:  Amie goes to sleep.

As you can see, adding anything into this schedule is….  hard.

Right around when Amie turned 2, Grammie made Amie a Kitty dress.  As you might imagine, she grew out of it, as she's now 4+.  She got the new Kitty dress a few weeks ago, and Grammie made another one for Baby Jumping.  SO CUTE.  

Amie and Baby Jumping can now wear matching Kitty dresses, as well as matching cupcake hats.

Steroids.  Not sure what the difference is between the steroids that bodybuilders use (illegally?) and the steroids that Amie is on, but she's poofy.  Hella poofy.  In order to fit her radiation mask, they've begun giving her a "Snowman beard" to help with discomfort.

A week ago, we went and cut down a Christmas tree from Broadview Christmas Tree Farm in Highland.  It sat (well hydrated) in our garage, waiting for today.  

Ya see.... putting up a tree is an event for the Shelley.  She starts off with a bare tree.

The kids need to be taken out of the way.  I ensconced them in Anya's bed, wrapped them in blankets, gave them treats, and gave them an iPad.  'Nuff said.

Once Shelley had the lights up, it was time for the kids to put on ornaments.

The final product!
(edit:  Shelley says she looks crazy in this picture, but I told her to do her best Vanna White, 
and she did....hence, the crazy.)

Once that was done, it was time for a Jet's Pizza and breadstick picnic!

This is another of my far-too-long posts.  So I'll end it here.  I have more to say, but I'll hold that until the next one.

Thanks again everyone for your support, for your thoughts and messages....sincerely.  :)

Monday, November 17, 2014

Some people are worth melting for...

The last 4 days have been.....full.

Not full like, I just ate a bagel from Panera, and man I'm full.

More like, I just ordered the bread bowl from Panera, with a side of baguette (yes, bread with a side of bread), and ate all the soup, the baguette, the torn off little hunk from where they poured the soup in, and then the entire bread bowl too.  That kind of full.

Thursday was the pool party that I described in the previous post.

Friday I went and bought a suit, the first since 1998.  Sarah rocked that out, and we were out in less than 40 minutes.  Good stuff.  Thanks Men's Wearhouse for making things stupid easy for me.

Saturday.  Wow.

First, we went to the Broadview Christmas Tree Farm in Highland to get a Christmas tree.  A family friend knows the owners, and contacted them so that we might be able to get a free tree, and have the experience together to cut it down.  The girls both liked that, although we had to bundle Amie up something serious in her off-road stroller to make her part of the experience.

Janey at Broadview was completely patient with Anya and Shelley as they wandered among the trees, waiting for one to speak to them.  This only took 20ish minutes, which was freakishly fast for my legendarily indecisive girls (Shelley and Anya).  Amie and I are way, way more decisive about things.  Probably to our own detriment.  We got TimBits on the way home, which made it even better for all of them.

Yes, I said them because side note, I don't really care about sweet things, for the most part.  After a meal, I might want a single square of chocolate like I do at work some times, but for the most part, I never want dessert. Or candy.  Or donuts. Or cakes. Or pies. Or really anything that I am supposed to like.  In the summer, I can get behind some ice cream, but for the most part, I can pass so easily.  All my cravings are liquid, unfortunately.  :)

Anyway, after we got home, and got Amie a nap (every day between 12-2), we received a visit from the lovely people who arranged the "Christmas in November" for us, courtesy of The Bayou Grill in Belleville.  Our elves?  Brian and Mary Copsey, Keith Barthauer, and three former students of mine, Janell Couperthwaite, Jillian Nelson and Leia LaPensee.

To say they brought a lot of stuff would be the most massive understatement.  This picture did not even encompass everything, as there was a lot of stuff on the kitchen table behind where we were taking pictures.  Yikes.

We spent the next 2.5 hours going through all the bags, organizing the gifts so that we could figure out what the girls could use now, what they could use in a few weeks, and what would be good for the future.  The girls were just blown away by the sheer amount of kindness, thoughtfulness, and generosity of everyone.

...and then we found the gift bag full of cards.  Wow.  There are no words.  Really.

Truly humbling.

We went to bed on Saturday night utterly exhausted, but surrounded by the love and well-wishes of a massive group of people who care about us, and are totally invested in the welfare of my daughter.

Sunday brought another event to us, and one with a slightly more unique visitor.

Camp Casey is a non-profit group that brings horseback riding to kids with cancer, to their houses, for them and their friends.  

They start off with grooming and education about horses, and then have the kids each take a ride on the horse...this one was named Ashley.

The girls had an amazing time riding Ashley, as you can imagine, and then got to do crafts afterwards, while the other kids rode.

It was chilly, but everyone had a great time with the Camp Casey folks, and especially Ashley.

Overall, the weekend was beyond good, but also beyond tiring for Amie.  We're hoping she gets her energy up/back over the next few days, as her nap requests have more than doubled since all that activity started.  :)  Good problems to have though.

One last little thing:  this is a piece of artwork I got from a student who I got to know well, but was never actually in my class.  She is a 10th grader these days, and I was so pleased to see this in our gift bags from the event on Thursday.  Thank you Ms. Lexie.  Truly.

Friday, November 14, 2014

We're humbled, and glad you're along for the journey

Greetings all, tons to talk about, but want to start out on some philosophizing, if you'll bear with me.

Going to work, dealing with pubescent and pre-pubescent kids from amazing to....less than amazing, I've had to become a master at compartmentalizing things.  I take all my feelings about everything that is going on, and ram them (teenager style) into the closet in the back of my head, and deal with them when they pop out.  I've become good enough at this process that I'm awfully numb to the details, as they arrive.  The details should horrify me, but I'm pretty much in a "help everyone else get through things" mode most days.

This past week, my carefully cultivated numbness has been getting shredded.

There are lots of reasons for this.  Amie's health (or lack thereof) is way, way more in my face being with her pretty much 24-hours a day, 7-days a week.  I've also been seeing a bunch of movies, sneaking out in the mornings here and there, and that always taps way deeper into my consciousness than other things.

But more than anything else, it's Amanda Palmer's fault.  <Warning to my more sensitive readers, she is a whole bucket of sharing....everything>

For those of you who have been with me since the beginning, I wrote about her here, a mere two months after Amie's diagnosis.  She's been a favorite of mine for a long, long time, for many reasons. Anyway, I'm reading her book, which is named "The Art of Asking: How I Learned to Stop Worrying and Let People Help".  The book takes a lot of material from her TED Talk, which is beyond amazing.

For those of you who don't have the time/inclination to watch the 13m video, here's the crux of her message...  We are told all our lives that to ask for help is to be weak, but only in letting others help, in being vulnerable, can we ever really develop "real" relationships with people, and the intimacy we get in being vulnerable is the stuff of legend.

Reading her book (to be honest, listening, because I'm an Audible addict), it's all those same messages, but blown up far larger, and way past her professional life.

Listening to her stories, as they unfold, have so many corollaries to my life as it exists right now.  The blog is nothing but a giant open vulnerability, letting people in, letting people hear the pain and sorrow, but also the joy and elation, of the day to day experience of living with cancer, and now, in watching it kill, albeit slowly.

So, that leads us to this past week, which has been a massive outpouring of love and affection for me and my family, for Amie and Anya and Shelley.

It started last Friday, with Tracy Delfuoco meeting us at the hospital, and giving me a bunch of stuff from my classroom that I needed to finish off grades for the marking period.  Along with those dreaded papers, came bags and bags of gifts for the girls, from students, parents, and staff members.  The notes from current students, past students, parents....all overwhelming in their desire to do something to lessen our burdens, to help in some way.  

Things accelerated greatly last night, due to our Impromptu Pool Party at the Hartland Aquatic Center.  The "monkey pool", as Amie calls it due the inflatable monkeys in the trees next to the lazy river, is one of Amie's favorite places on Earth, and consistently reminds her of her time at Aulani in Hawai'i.

The party was accidental, truly.  We went to the pool last Thursday morning, and apologized to the head lifeguard <I believe her name was Beverly, will check for sure later> for bringing the stroller out into the pool area, due to Amie's lack of ability to walk.  She told us it was no problem, and we started to swim.  As we went to leave, the Pool Manager, Sean Corcoran, approached us, and offered a free pool party for Amie.  After talking through some details, he shared that the entire kids' side of things would be free, and we could have up to 75 people in the pool.  They even scored free food from two local vendors as well. (I don't have the notes on me.  I'll fix when I have them to make things official)

That party was last night.  It was beyond overwhelming.  We many people there who have been huge supporters of Amie.  To look around, as I floated in the lazy river with Amie, and see dozens of families having a great time, playing with their kids, talking to each other, some of which had not seen in each other in was a massive affirmation of life, of friendships, of the hard work we put in to raise our kids, to hold together friendships under said kids, to hold together relationships under the stress of life and illness and jobs and kids and...everything.

But as I was packing up all the gifts that people brought (totally unnecessarily), I saw this massive line up of people waiting to leave....and I realized it was also a party that was the opposite of a funeral in some ways.  It was a small gift that a terminal diagnosis has given us.  People are able to say goodbye to her, to experience her joy and language and jokes and fun...while she's alive.  They were able to hear her laugh (at 9pm!), have her tell a joke, get a hug (if you were really lucky like Jennifer Overholt!), and just enjoy her.

Watching that, I realized that the party wasn't just for Amie, it was also for them.  For those who have been helping us keep strong, keep together, and stay whole through this was a gift for them.

So.  For all those who have helped us, and will continue to help us in this journey...Thank you. Sincerely.

There are a ton more things I'd like to write about right now, but I think what I've written is the perfect amount.  The pictures of last night will follow in the days ahead, as will the events of the weekend that we've got planned.

Thank you, everyone. For everything.  We're humbled, and glad you're along for the journey.

ps.  The blog passed 200,000 views this past week.  Wow.

Sunday, November 9, 2014

They are helpful for walking, but you and Daddy can carry me.

Greetings All,

I’ve spent a lot of time thinking about the blog over the last two weeks, and heard a lot of voices.

Here’s a summary of the main two sides, both of which have very valid points:
  • Quit worrying about the blog and be present with your daughter.
  • Keep writing whatever you feel called to write, it’s therapeutic for you, and we’ll decide what is too much.
I think I’m leaning quite heavily on the 2nd set of voices, but I will say that I’m not going to actively worry about the affect of what I have written here on the people who choose to read it.  In the end, as someone pointed out to me in a FB private message, no one is encountering this stuff accidentally, they have to click through to the blog to see it.

So, the palliative care plan that they laid out is working, and seems to be doing so rather quickly, which we really like.  Amie is much much much more comfortable today than she was two weeks ago, when she was so fragile and in so much more pain.

We talked to Marcia, Amie’s Nurse Practitioner who works closely with Dr. Robertson, and we talked extensively about the plans, and here’s the gist of what I learned:  there’s the brain cancer locations and the cancer in her spine.  The cancer in the spine is going to cause massive discomfort, as it is affecting the spinal column, the nerve coverings, and creating structures that are pressing against nerves.  This is pure pain, and causes radiating nerve pain.  The palliative radiation is to knock this down as much as possible.

Then there’s the brain cancer sites, which are also growing.  The radiation should slow this down and knock it around a bit…but it’s already shown itself to survive through the radiation, so there’s no assumption that it will be taken out.  

In short, the brain cancer will kill her, but the spine cancer will make her horrifically uncomfortable. The cancer is the same type in both areas, to be specific, though.

An Amie story from the last two weeks:

Amie's legs don't really work much anymore.  She has some limited strength to lift up her butt when you're changing her diaper, and can sit unassisted again (thank you steroids and radiation!), but there's no walking.

Shelley asked her if it bothered her that she can't use her legs much anymore.  She responded with “It ok, I don’t need them much” and followed up with “They are helpful for walking, but you and Daddy can carry me.”

How can you not melt at that level of.....kindness and lack of worry?


We've moved Amie into our bedroom, with a mattress on the floor next to Shelley's side of the bed.  She normally sleeps in her bedroom with Anya, which is about 20 feet away, and harder to hear her.  She really has to belt it out for us to hear her call for us.  

The steroids are making her really eat.  Like 2-3x as much as she normally would, and at all times of the day.  Usually around 4a-5a, we'll hear this little voice chime out...  "Mumma...can I have a clementine?"  So cute.  So early in the morning.  Of course one of us gets up immediately and gives it to her, because it's the drugs talking, not the child.  She'll go back to sleep after the clementine (...or the clementine and a bagel...or the clementine, and a bagel, and a donut).

Any idea of a proper diet is totally gone, btw.  Yes, we're feeding her cinnamon and sugar donuts, and bagels, and toast, and Mini Tater-Tots (these are called hash browns, btw), and buckets of Fruit Punch gatorade.  Her taste buds are shot, but she's hungry as heck.  So crap food it is!

For anyone who wants to watch a LOT of video of Amie and Anya interacting, here is the link to the YouTube channel where I'm uploading our archive of videos.  It's just our desire to take chunks of these weeks and make sure we have really solid memories for years to come.  

We met with the hospice intake nurse on Friday, and the regular hospice nurse is coming for our first weekly visit tomorrow.  Plans are moving to make sure that everything that needs to be in place when the time comes, will be in place.

....I've even got plans in place to buy my first suit since I applied for a job at WNEM in 1998, explicitly to impress Ms. Jennifer Hogan.  :)  Thanks Sarah, btw, for agreeing to go suit shopping with me.  You've got far better taste than I.

One more thing before I check out...thanks for all the incredibly well-thought out responses to my last blog, both on the idea of what is "strong", and what I should do with the blog.  I really appreciated the responses, and they are a testament to the level of respect and consideration y'all give my words.  I really appreciate the time you spent sending them to me....especially the ones from former students, even with the swear words included.  :)

Saturday, November 1, 2014

Here's to small victories, and doing your best with what you've got...

There's a band that I've been obsessed with for years, and I imagine that most of you haven't heard of them.  Their name is Dead Can Dance.  A story I read a long time ago (which could be off, or made up, or just plain a lie) is that the name of their band came from an aboriginal ceremony where found wood is carved into a mask, and then used in a ceremony to celebrate life.  Thus the dead (the wood) comes back to life in the most life affirming

I have been gravitating back towards them in the last month, and their live album "Towards the Within" specifically.  I took a long walk around Ann Arbor this afternoon, headphones in, and listened to this album twice.  It was a great time to clear my head, have some time to process, enjoy being outside, and think.

Here is a video of the concert that the live album was recorded at.  Feel free to enjoy, or if nothing else, listen to where Lisa Gerrard drops her voice in at 4:11.  Her voice is so...otherworldly to me. Lisa Gerrard is the the lady playing the hammered dulcimer at the start of the video.  No I did not know the name of that instrument.  I looked it up.

Anyway, I bring this all up, because I don't know what to do with the blog now.  It's been weighing heavily on my mind for the last few days.  I don't feel as though me telling you the beat by beat of her decline is going to do anyone any good.  At all.

However, I don't feel as though just talking about the good moments she is having would be faithful either.  It would mislead people into believing something that was not true, or at least not the true picture of where she is at.

If I ask you for feedback, people are going to either not respond, or tell me to do whatever the hell I want to do, because it is my blog after all.  :)  But I'm torn.  Pondering.  Feel free to email/comment your thoughts, but only if you feel compelled.

One thing I did want to talk about though...the idea that Shelley and I are "strong".  I feel inherently dishonest in people consistently saying that.  It's as though we've got something special going on, and that other people would be acting differently.  I mean, sure, some might...but I think most wouldn't.  I think most people, put into this situation, would be acting quite similarly.  Really.

Here's what I know:  I've done some fantastically cowardly things in my lifetime (yes, I'm speaking to you, CC/CF), and other things that I'm really not overly proud of having done.  I've had to learn to see confrontation as something that can be a teachable moment, and not just something to avoid like ebola.

I can't really speak to Shelley's feelings, but I do know that I don't feel that strong at all...I just feel like someone doing their absolute best, under nearly unbearable stress, to hold it all together.  I show a really good face at work, on Facebook, and on the blog.  But I'm a mess a LOT.  Just like the people who think their life is substandard after looking at FB, know that we are balls of mess quite often...we just don't publicize that side of things.

A few things to highlight:

We got our Angels of Hope grant!  Angels of Hope is a Metro Detroit based group that helps out families struggling with things like this, and tries to lift the burden a bit.  After a bit of conversation and discussion, we came to the decision that helping us out with gasoline would be a fantastic way to help us.  We received the gift cards last night.  Thanks!  Click here to Donate to them.

Uncle Chad and Aunt Emily were able to come to the hospital today, and hang out with us for a few hours.  Amie really loved getting her car rides from them.  And me.  And Mommy.  And me.  And Mommy.

Oh yeah! We're in the hospital for the weekend getting palliative radiation, and helping get her pain under control.  We might be out tomorrow night, or Monday afternoon.  Not sure when or which.

Pardon the graininess, but I didn't want to raise the light level nor use a flash (iPhone 6+ camera is AMAZING, btw).  I wanted to end the blog post with a picture of just how serene she is still, when she sleeps.  The pain hasn't taken that yet.  Celebrate what you have, and the victories when you have them.

I'm sleeping here tonight.

Nighty night all!

Wednesday, October 29, 2014

My friends, the 3rd time is....not the charm

This, my friends, is the blog post that I have been dreading writing for a long, long time.

To make it quick like a bandaid, the MRI was not good.  Profoundly not good.

The MRI showed, much like it has each time we've had an emergency MRI after a quick and swift decrease in her mobility, that the cancer has leaped forward past all the therapies, and become more aggressive.

To be succinct:  The cancer has now spread aggressively into her spinal column, and is now past the point of any possible therapies.

We looked at the MRI in an office with Dr. Robertson and Marcia, and there was significant growth all along the spinal column.  To quote Dr. Robertson, the MRI looked like her spine had been dipped in sugar.  The dye makes the cancerous cells become far more prominent in the image, and the prominence was easy to see.

(Here's a picture of Amie to make this 1% less depressing)

So what does that mean from here on out?

All the rest of the therapies that we do will be palliative in nature, and not therapeutic.

Google will tell us: pal·li·a·tive  <ˈpalēˌādiv,ˈpalēədiv/>;  adjective
1.  (of a treatment or medicine) relieving pain or alleviating a problem without dealing with the underlying cause.  "short-term, palliative measures had been taken"
synonyms: soothing, alleviating, sedative, calmative; for the terminally ill
"palliative medicine”

We are going to start a course of cranial-spinal radiation on Friday.  This will dramatically lower her counts, destroy her bone marrow, and cause increased nausea.  But they believe it will also dramatically decrease the pain levels she will be feeling as the cancerous cells are attacking the nerve cells in the spine, as well as increase muscle functions in her legs over the next weeks (and months?).

We also started her on a steroid tonight that could help with some quality of life issues.  They aren't sure that it will help, but it was believed to help before, and she tolerated the steroids quite well last time.

Some of you are saying…what the hell?  The tumor shrunk in the last MRI!  What the hell is going on?

In short, that’s how aggressive this cancer is that Amie has.  It went from getting knocked around, to colonizing the spine in just a little over two weeks.

I could make a comparison here about how we were Oberyn Martell, gloating over the downed body of Gregor Clegane…but that might just be a bit overstepping my bounds, and a little much.  But I will say that yes, we were positive as of the last MRI.

They can’t say what’s going to happen specifically, as the radiation could help more than they're expecting, but it's not a positive prognosis.  At all.

My personality at this point wants to start cracking jokes, to make all of you feel better, because that's what we've learned to do, make others feel better about all of this.

My Dad always says that's crap, and I don't need to spend any time making other people feel more comfortable with the fact that my daughter has cancer, and that if people feel sad that's not my job to make it better.  But, to me, it is.  I have all the time in the world to come to terms with this life, and her prognosis.  I have some serious callouses built up against it.  I can look at it in the face and only cry a little.  But for people who do not have a situation like this going on, it's like standing above a slab of molten steel (I've done that too.  Courtesy of said Father)....  it's extremely unpleasant, and causes you to quickly want to move along.

But I think me cracking jokes, making people feel better, somehow makes me feel....less burdened by it all.  I have no idea how.  I've always read about the British habit of "taking the piss" out of someone and something, in the sense that you make fun of someone/take them down a few pegs if they're getting above themselves.  I kind of feel like making jokes about the cancer, about the terminal nature of it, about the whole freaking endeavor is just part of me taking the piss out of cancer....removing some of it's power over me, in thinking that it can destroy me.'s going to destroy parts of me, and hopefully fertilize others.  That's what really awful things do to you.  I got divorced 14 years ago (actually 11.11.00), and it destroyed me...but I never would have been a teacher if that hadn't happened.  I never would have had the stamina and drive to re-do so many of my classes to get there.  

Here's the girl pile from tonight. 2% less depressing now!


I'm heading into work tomorrow.
Shelley is going to stay at home and play with Amie tomorrow.
Anya is going to school tomorrow.
We're going to start radiation on Friday.
We're going to play it by ear from here on out.

At some point, when things look like they're moving towards the end, I'm going to stop working.
At some point, we are probably going to pull Anya out of school for a while.
At some point, Amelie is going to die.

But before all of that, we're going to do exactly what we've been doing for the last two years....enjoy every single last stinking moment that we've got her...and go from there.

Sound good folks?


Saturday, October 18, 2014

4th Birthday... looking back and forward

Today is Amie’s Birthday, and we spent most of the day at Cranbrook Science Museum.  (More on that later).  During one point in the day when the girls were doing a craft, I took a moment to read the last two blog posts from Amie’s birthdays.  Wow.

Sometimes the blog, for me, is a way to shield Shelley from the burdens of updating the incredibly well-intentioned people who want to know about how Amie is doing.  Other times, the blog is a way for me to show off defeats, successes, minor miracles, or plain failures.  These are all successful blog posts for a variety of reasons.

However, there are times when I use this platform as a means to dump out the contents of my head, and use it as a cathartic experience, no matter how much it might not make others feel well.  Last year’s post was one such post.

I read it, and immediately started crying, standing in Cranbrook.  It was such a raw, visceral piece of writing that was a testimony to how much pain I was in last year at this time.  Hell…for most of the last year.

Anyway, I also read the post from two years ago, and it made me smile.  I was holding onto so much hope, and humor, and excitement, and love for this tiny creature.  I was bubbling over with the idea that this (unwanted) journey might not be a derailment of the train of our plans and hopes and dreams…and just a pitstop.  

I think I’m in a better place now, with the theoretical upswing of Amie’s prognosis.  But I still don’t have a place to put those feelings, to trust those feelings. I have them.  I am protecting them, but they’re still just in my pocket, and not in any sort of formal mental architecture.  

So that leaves me with a third birthday post for Amelie, and I guess also for me, because my birthday starts in 3 hours and 38 minutes.  We’re bound together that way.

I just walked out of the movie “Fury”, a WWII tank movie starring Brad Pitt, Jon Bernthal, Logan Lerman, Michael Peña and Shia LeBouf.  It was not a normal war movie, nor was it a normal abnormal war movie.  It was…..unsure of itself at times.  I can say this because I’ve watched a lot of war movies with my Dad.  A lot.  For a while during HS, especially when he was working afternoons and would get home around midnight, WWII war movies would frequently be on TV and we’d watch The Dirty Dozen (which always seemed to be on), or some other war movie.  

Fury was typical in telling the story of the sage older soldier (Pitt), and the new recruit (Lerman), as the older soldier both tries to protect the innocence of the new recruit, while also getting him ready for the necessities of war. There were periods in the movie that were quiet, and contemplative, and made me think to our journey with cancer.  Times where my faith in things, where holding onto my positivity has been thoroughly shaken.  But there are also times where people have stepped up for my family, out of the blue, and made things happen for us that would truly have never been possible.  Times where my faith in humanity is filled to bursting.

Here’s what I know for sure:
  • No matter what happens to Amie in the years ahead, I am truly amazed and proud at the kid she is becoming.  She is a kind hearted kid who loves the living hell out of her sister, and constantly surprises me at her overt kindness towards others.
  • Anya is a kid who has levels of strength and courage far beyond what can be expected for a 7-year old.  She is the secondary victim in all of this, and the one who gets the shaft the most often.  We do everything we can for her, but there are just times we can’t shield her from the realities of what is going on with our family, and with her best friend.
  • Shelley and I have developed skills upon skills to deal with this journey.  I like using the idea of it being a journey, because there is no defined destination.  We can’t say for sure that she will defeat this, nor is there any real way to ever say so.  The treatments for her illness are nearly as toxic as the illness itself.  Are we trading years for years here?  Yes.  We acknowledge that.  But the years we’re getting now are ones that we are savoring deeply, taking breaths and living in the moment as much as we can possibly do. 

Over and over, people surprise us through the power of their dedication towards my family.  Tomorrow morning is a perfect example.  We’re going down to Detroit to watch a former student run the Detroit Free Press Marathon, and doing it as a means to celebrate her own personal journey towards health, as a mirror to Amelie.  

A former student who I had on my very first day of teaching (ever), and had me as a teacher almost a decade ago.  I have no words to speak to that kind of generosity and passion for my daughter.  None.

Back to today:  Cranbrook Museum of Science closes a few times a year, and opens their doors to an organization called Kids Kicking Cancer.  We had the opportunity to go there last spring (the weather was virtually the same both days), and enjoyed the heck out of it both times.  

They clean the place from top to bottom to ensure lack of infection risk to cancer kids whose immune systems are shot.  They have all types of crafts, experiments, treats, and fun things for the kids.  

The person who coordinates the event had figured out that it was going to be Amie’s birthday on the day of the event, and communicated that with the director of the Museum, Mr. Stafford.  He shared with us the story of how the events started, and arranged for a special gift for both girls.  In talking to him, he shared with us his son’s journey through Leukemia, and then later on his own diagnosis of the same.  It…  made the whole day that much more personal, knowing that the people who were providing the day for us understood how big of a deal it was, and knew that normal is something we’re always chasing, and often failing to find.

We got home tonight, Shelley made Apple Crisp for Amie (by special request), and we did the birthday thing again tonight, after last week's pre-birthday.

Opened presents, and Anya got to show Amie her special card and gift she made (no picture of Anya's gift.  It was amazing.  Next time)

So.  Another birthday post draws to a close, and another year stretches out before us.  I have no idea what this year will bring, but I know that we’re equipped to deal with it, whatever it is.  Let’s just hope that most of the stops on this journey bring us a modicum of peace and comfort wherever possible.  As Jean Luc Picard might say, “Make it so.”