Wednesday, November 26, 2014

You matter more than you know.

Greetings all, and Happy Thanksgiving Eve!

Before I get to talking about Amie's 2nd ringing of the bell, signifying her end of radiation for the 2nd time, I need to talk about just how awesome and amazing a group of people are.

The above picture is Kristan, the Child Life specialist who works with the kids who are getting radiation.  Her job is help the kids have a calm and fun experience before they start radiation, and then to navigate the radiation therapies themselves with the least amount of stress, anxiety, or frustration.

Radiation, for you new readers, is a much more extensive thing than chemotherapy.  In chemo, we'd get 1-5 days of chemo, usually in-patient.  Radiation is quick (10-25m per session), but happens every day for weeks on end.  This time, we had 21 sessions of radiation, each time in Ann Arbor.  

Every day, when we arrive, we'd walk into the Radiation Oncology playroom and find Kristan setting up a craft, a game, or some other activity that would bring joy to Amelie.  I cannot possibly explain to you how much joy this brought to her to know that every single day someone amazing was going to be there waiting for her, to do crafts and play.

Shelley was really, really disappointed to learn earlier this week that Kristan was not going to be there for her last day in radiation.  Kristan held Amie last time when she got to ring the bell, and Amie adored her for it.  Kristan was heading up north for her husband's side of the family's Thanksgiving, and needed to leave immediately after work on Tuesday to get there.

While driving to Mott, she said to me that she really hoped that someone was going to be there from Child Life, because Amie really wanted to paint her Spider-Man mask after her treatment (more on that later).  If they weren't there, Amie wouldn't be able to do that.

When we rounded the corner, the entire Child Life staff (minus Kristan) was there.  All of Amie's best hossabill friends.  Jennie, J.J., Stephanie, Mariana, and well as Kiersten from music therapy.  They had all dressed up in pink (more on that later), and J.J. even improvised a cape, with J.J. and Molly covering themselves in pink post-it notes, as they hadn't worn pink that day.

Shelley and I were immediately overcome with emotion, seeing that they had all ditched all their other responsibilities to come give such an amazing send-off to my daughter.  The level of dedication, love, and affection that showed towards Amie  Want to know how overwhelmed I was?  I forgot to get a picture of them sitting there after we arrived. :)

To the Child Life staff who was there today (if you read this):  Thank you from the bottom of our hearts.  You made our lives today.

When Amie finished her radiation treatments this summer (in July?), she asked people to wear pink to celebrate the experience.  Most of the staff wore them, as well as our family.  It was an explosion in pink. As it worked so well last time, they decided to do it again, and  Amie was able to ring the bell again surrounded by an explosion of pink.

She was quite tired today, and as such, was really overwhelmed by all the attention...but that's par for the course for any interactions with Amie after her 12p nap these days.  As I said previously, she has a few really strong hours in the morning, and then fades quickly in the afternoon, and crashes really early for the day.

After she finished radiation today, she was able to paint her Spider-Man mask.  Last time she painted it red.  This time...she wanted to paint it Rainbow. 

Amie did almost all the painting herself, as the palliative radiation has done exactly what Dr. Robertson said it would, giving Amie a relatively pain-free few weeks, and far more muscle control over her body.  

She's got full control of her torso, bladder, and bowels...and probably 70% control of her legs and movement.  She has 0 desire to walk, but she will walk with someone holding her under her arms and supporting her...if you make her.

The masks that they make for radiation oncology are there to stabilize the head, ensure their lack of movement during the therapy itself, and help them line it up exactly for each treatment.  They do so much work to make the therapy as benign and happy as possible, that the mask becomes a non-entity in the experience.  

But to me, it's a scary as hell artifact of a scary as hell experience.  I am not claustrophobic in the least.  I fell asleep during my only MRI.  However, the idea of having my head strapped to a platform while radiation is streamed into my head... that's creepy as hell.

So Amie painting her mask, and us hanging said mask in our living room on the wall is both awesome and horrifying in the same moment.  It's a torture instrument, an artifact of hope, and a medical instrument all in one simple device.  Ahhh, cancer treatment.  What a devious monster you are.

Now:  For my big plan.  I need help.  From you.  My loyal readers.

Amie loves jokes.  I can't find a specific video right now of just her telling a joke, but there's several inside of videos we've already posted.  Anyway, the below two images, which are from a card that Grammie sent to Amie a week ago or so, explain perfectly the sweet-spot of jokes that Amie loves to tell, and hear.

Her jokes are simple, easy to understand for a 4-year old, and often revolve around animals.

Here's one of her current favorites:

What's a bird called in Winter?

A Brrrrrrrrrrrrrrrd.

So, your mission, if you choose to accept it:  I need jokes.  Fitting the above description.  Lots of them.  Possibly hundreds.

Send them to me in Facebook messages.
Send them to me in texts:  810-513-3180
Send them to me in emails:
Send them to me in actual mail:  email me for our address

Thank you, giant loving community of people who care for Amie.  You matter more than you know.

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!