Saturday, December 13, 2014

A really overwhelming week...

This has been a really overwhelming week for me.  

How so? (you might ask, if we were sitting across from each other at a restaurant with cold, frosty beverages in front of us.  Coca-Colas, of course. Stop that)

Amie’s health is declining, and I believe it’s happening quite aggressively.

The fluidity of her movements has always been a major flag for us, in being able to see how easily she can pick up things, grasp a crayon, or do other simple movements.  We’ve gotten really used to picking up on that kind of thing as part of our daily monitoring of her.  Seeing it decline, and watch her having trouble doing the few things she can do independently is really hard.

Additionally, her blood counts have been literally the worst they have ever been.  Her platelets, which help her blood clot, were at 12 on Monday. As you’re reading this, yours are probably in excess of 150. She had a 90 minute nosebleed and we could not stop, and just went into the hospital to get her blood checked and transfused.  Her hemoglobin (red blood) was at 6, and yours is probably around 13-15.  That’s a little girl operating at less than 50% of the oxygen that she needs to thrive.  Marcia told me that most people, when they go below 10 refuse to get out of bed because their fatigue is so extensive.  Now make that 40% worse.  Yeah, we've got a tough kid.

Add into the mix that her radiation has all of a sudden exploded into radiation burns.  I could show you the pictures I’ve taken, but in all honesty, that’s not going to help anyone do anything, and is just going to scare and sadden so many of you to see it.  She says it does not hurt, and her blisters do not bother her… (we think we can say thank you to the methadone for that), but it is still REALLY hard to see, and not be overcome by it.

Top it all off with the fact that she’s vomited twice today, for no reason that we can really see.  She had some blood clots in her vomit, but nothing sizable to trigger her vomiting.  It's been a year since she tossed her cookies, so that's a warning sign.  Looking at the wikipedia entry for symptoms of a brain stem tumor, meaning that the tumor is spreading from the cerebellum into the brain stem, we’re hitting several of the qualifying symptoms.  Or she could just be vomiting.

Put it all together, and the signs that things are progressing, that the relief from the radiation is coming to an end, is very, very hard.

This is Amie and Shelley crafting this week.  Emotion shift!

But this week has also been ridiculously full of overwhelming and outlandish generosity from people.  We have received a constant stream of donations on our GoFundMe page.  Then Thursday night a virtual stranger to our family, with assistance from a passel of former students, hosted an event raised a ton of money for us at Egan’s Pub, in Belleville.  They donated 15% of their receipts to my family for all their sales this weekend, on top of the profits from the basket raffles/silent auctions that were held.  Then, tonight, Angels of Hope brought a whole car-load of presents to the girls.

What does a person even say to all of that.  It seems thank you is so pitifully insufficient, but then again, that’s not the reason they are doing this, that you are doing things….  

What does all this mean to us?  

We don’t have to worry, about the extra things.  I know that I will run out of vacation days on January 9th, and the money that is coming in will dramatically help supplement us until I can return to work….whenever that is.  I think we can all agree that the 8th graders don’t need to see a 42 year old dude weeping whilest teaching about the emerging antebellum emancipation movements, and how that helped precipitate the American Civil War.  That’s only going to be scary.

I'll be able to not work, to not worry about the money for as long as we need to.  To take care of our family, to take care of the details, and not have to stress about that side of things.  Oh, don't get me wrong, we've got plenty of stress...just not that stuff....and that's the power of the gift of weeks like these....of people like you. To lift the stress off of us that we have due to all this, at least the stuff that you can.

So, yeah.  I’m not feeling the spirit of writing today, at least like I normally do, but wanted to check in and say thank you, from the deepest depths our hearts, for all the generosity that people have shown to us.

Saturday, December 6, 2014

It was the best of times, it was the worst of times

Greetings All,

“It was the best of times, it was the worst of times”.

I remember reading that when I was a young lad, thinking it was a strange thing to say, probably not really understanding it very much…and moving along past it.

Well folks, I realize now that I’m living it.  Funny, how life works sometimes.

This past week has been really amazing, but also really crappy.  

Amie’s platelets are low.  Like crazy low, and have always been a consistent problem for her.  The platelets are the part of the blood that stop you from bleeding, and help clots form.  So, a low platelet count can be a really bad thing if you get hit hard, or do something really jarring to your body, because the bleeding can be internal, and really cause problems.  A “normal” person with no problems hovers in the 150,000+ level when their platelets are checked via blood test.  Amie gets transfusions at 30,000.  She’s had a few of those during and since radiation concluded, and was just above that threshold last Wednesday when she was last at Mott.

So, all week long, Amie has been getting small bleeds through her various body openings <ahem>, and that’s most likely due to the normal everyday things that she does.  Her platelets are most likely really low right now, and the coughing (more on that later) is probably causing some minor tears and ruptures, causing her to bleed.  

In what world does your normal shift to where you’re ignoring the nasal and anal bleeds from your 4-year old, and chalking it up to things just being as they are.  Ugh.

But then again, she still has 3-ish hours a day to really have fun with Shelley and Anya, crafting and creating, and coloring, and eating, and eating.  During those hours, she’s so animated, so fun to listen to and talk to, so…Amie.

But back on the crappy side those hours are so few, and she’s sleeping more and more as time goes on.  She’s sleeping about 16 hours a day now.  She “wakes up” at 7:30a.  She starts coughing around 5am, and then we give her an Oxycodone, to attempt to limit her coughing.  She coughs off and on for 2-hours.  Horrible, wracking coughs that have moved into that “normal” that disturbs me so much.  She’s energetic and awake until Noon, and then sleeps for 2-4 hours.  She wakes up, and is running between 25-50% energy until dinner, at which time she crashes for the rest of the night by 6p most days.

But back on the happy side, she’s amazingly affectionate all of a sudden.  She keeps giving us these amazing kisses, hugs, and wanting long stretches of snuggle time.  It’s primarily been with me she wants to snuggle, which I’m not going to argue with…ever.  So these periods of snuggling, where she pushes her little arm over my neck and attempts to pull me close to her are just….transcendently amazing.  Life affirming, memory making, and beyond special.

But back over to the crappy side, the steroids, of which we have taken almost down to zero, have inflated her face so far beyond what I think of as Amie.  

Here is a pic of Amie from November 9th.  

Here is a pic of Amie from December 6th.  The change is so, so dramatic.

Her skin is pulled tight, like a swollen area after a bee sting.  Her smile is so awkward, because it looks like it might even be a bit painful….which I know is just parental overreaching, but still.

It all just builds into this really, really weird time period….because we’re essentially on a death watch, paired with a memory acquisition imperative.  Wait for the bad, build the good.  What a screwed up, but completely special time.  

If any of this sounds like complaining, I swear to you it isn’t.  Not even a little.  I’m just riffing on the existential weirdness of this time, and could probably do so in another venue….but y’all have said to me that you want me to process what I need to process, write about what I need to write about, and move along.  I imagine that there’s tons of people out there who could read what I just wrote and think that I’m complaining because they’d love to get that kind of time with the person that died unexpectedly.

But as a parent, living in this time is so. strange.  We’re programmed by society to do everything we possibly can do to fight, to protect, to prolong our kids’ lives…and there’s a giant slice of acceptance and surrender that are present in this time.  But I know that if we were to start pumping her full of all types of experimental stuff, we’d just be doing that for us, as it would be our desires to “win”, and not her overall quality of life, that would be the reason for doing so.

Ugh….so much stuff to unpack in there.

Last thoughts before a slew of pictures:   Our final fundraiser (I promise. Really. I’m feeling like a burden) will be December 11th at Egan’s Pub in Belleville.  The organizer, the amazing Ms. Laura Ridenour, would love a few people to help her run 50/50, Silent Raffle, and other things on 12.11.14.  If you’d like to help, and can commit to being there for her, send me an email and I’ll give you her information to coordinate stuff.

Shelley had first knit Anya a cupcake hat, many years ago.  She knit another for Amie a few months ago, and it has become Amie's go-to hat for a while now.  She DOES NOT TAKE IT OFF, except for when she's in the bathtub (which is less than 5m each time) and when we're changing her clothes (which is less than 30s each time).  It's now how I see her, in my mind.  Shelley just finished another hat for Anya, and of course one for Baby Jumping.  Three cupcake hats! Yay!

Here's the snuggling that we do. I've gotten a lot of practice at it.  It. Is. Priceless.

Night all.

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.  :)