Friday, July 25, 2014

Repost from FB...

This was a blog post I posted to FB from Hawai'i, as Blogger was running so slow...

Long couple of days over-filled with great stuff. Amie is still waking up at the utter crack of dawn, which makes things really complicated when you have one kid who is up and READY! at 3:30a, but the rest of everyone is not. As it was Shelley's birthday today, I grabbed Amie and we went for a walkabout.

Tonight's big event was the Paradise Cove Luau. Walking into it, I expected cheese. Not sure if it was going to be the good cheese where you can enjoy it, or the bad cheese where you feel tired because of it.

Boy was I wrong. Totally wrong.

The singing of traditional island songs from across the South Pacific was really impressive. The dancing from all the different styles was really impressive, more so because I'm so horrifically uncoordinated that it's light years outside of my comfort zone.

The star part of tonight was the performance of the Haka (the Maori warrior chant) and the Tongan Fire Knife Dance. I've OFTEN been accused of being too tech driven and not in the moment, so I just put down the phone and experienced both without attempting to record them. I'm glad I did.

Here's what I loved about both things....I live in America where we have so few rituals, so few customs... I yearn for them. I love to know about how other people eat, drink, worship, dress, talk...and all other parts of their custom. Hell... I struggle to be a vegetarian on days like this because I just want to eat the Japanese traditional breakfast, or the Hawaiian loco moco breakfast, both of which are meaty to the extreme...just to try them. The dances tonight were a celebration of a culture that is alive and amazing to those who come from it, and defines who they are in so many ways.

The other thing I wanted to mention is the use of the terms "Cousin", "Aunty", and "Uncle" here. Over and over, people are referred to as family....not in the blood relation sense, but in the Hawaiian 'Ohana sense that we're all related, we're all here to help each other, and things only get better when we slow down and help each other. Strangers are Cousins in that we ought to treat them with respect and love and patience. Elders are Aunties and Uncles in that they have stories and lessons to teach us, and that might just help us avoid a few catastrophic blunders in our own lives, or at the very least give us a little context to how they became who they are today.

Yesterday was the solo character meet and greet with our ‘Ohana. <Seriously, I’m going to import this idea into my classroom this year> Shelley and I both were thinking that the girls were not going to be into it very much because they have had so little exposure to Mickey and Minnie. Once again, boy were we wrong!

The girls both loved the crap out of it, and were so happy it went as long as it did. For 30 minutes the girls hung out in a private courtyard, with both characters pantomiming all their responses. The girls loved every minute of it, and kept coming back with hugs and hugs and hugs for them. Aulani provided a disc with all the pictures from the event, and I of course shot my share as well.

The girls are all sleeping, so I’m going to end this now. There’s a TON more I could write about, but I pick that up later.

This should have been a proper blog post with all of this, but FB was loading the pictures much faster than blogspot, so I loaded them here. 

Night All!

Monday, July 7, 2014

Is there anything she can't do?!?

Greetings All,

I wanted to wait a bit on this blog post for some news from Google, and now that I got it I can proceed.

By encouraging you to click on the ads, I violated their terms of service, and they turned off the ads and removed all the ad profits I had been accumulating from the month of June.  C’est la vie.  It wasn’t ever going to be a replacement income for Shelley…but it was nice.  Whatever.  J

Amie Update:
  • She had her final radiation treatment last week, and it sent swimmingly well, as it had all along.  She’s really a trooper.  At the end of the process of radiation at UMHS/Mott, the patient gets to ring this bell.  It’s the type of bell that ends rounds of a professional boxing fight and is really, really loud.  Here’s the video of it that we posted on FB last week.
  • Amie is also having side effects from the Irinotecan, which are these weird ghostly lower-GI stomach cramps.  I’d say they look like menstrual cramps that I’ve seen people reacting to…but that might be considered “too much!”, so I won’t….but I did.  <See what  I did there?>.
  • We are scheduled to go into Mott tomorrow for a blood draw and a meeting with Dr. Robertson and Marcia, and they’ll give us the timeline of where we go from here.
  • Also, as we’ve posted on FB, our Make-A-Wish trip is scheduled for July 16th – July 23rd.  The resort is on the SW corner of O’ahu, about a 30-minute drive from Honolulu International Airport.  They’ve scheduled us a 4-ish hour flight leaving Detroit Metro at 10am to Phoenix with a small layover (90-minutes) and then a 6-hour flight to O’ahu.  We’ll lose 6 hours on the flight, and get there around 5:30p local time.  I can’t wait to see what the girls look like after that time shift.  The first experience with jet-lag is never good.  J  More information later, as we’re meeting with our wonderful Make-A-Wish coordinator on Tuesday.

However, the big event on our horizon is the Mom-2-Mom eventon Sunday with the stars of Teen Mom and Teen Mom2.   The entire event is being organized by the people who own The Link Fund, and much of the proceeds are going to be donated to us.  Here are the hard details:
  • Doors open at 9:30am and the event goes to 4pm.
  • The event will be at Mt. Brighton.
  • There will be food and beverages sold at the event, by the Mt. Brighton location staff.  No idea on what or how much.
  • The Teen Mom/Teen Mom 2 couples are both going to be there signing for the entirety of the event.
  • The cost of admission is $4.
  • There will be a variety of vendors selling goods + Moms selling gently used goods of their own.
  • There will be copies of the Kailyn's book available for sale.
  • There will be a package for sale at the event for a signed postcard, a linkfund bracelet, and a picture with the stars that will be mailed to you after the event.  I believe that is $15.
  • I'm sure there's more.  Email me with questions.

For those of you who want to help out at the event, the coordinator is Ashley Haponek, and she’d love the help.  Contact me and I will coordinate.  She needs people to help organize people, take pictures, collect admissions, etc, etc.  Anyone want to hang out and help?

One last thing…  it was recommended to us that the GoFundMe website was a bit more well-known and trusted, so we switched over to that from fundrazr.  The fees to use them both are roughly the same. 

Lastly, a few pictures!

Shelley and I got a break on our anniversary that I talked about on the last post and I took this picture.  The peony gardens are a stone's throw (literally) from Mott, and amazingly gorgeous.  Take a walk through there (handicap accessible too, with metered parking nearby) next time you're near there.  Part of the Nichols Arboretum footprint.

Shelley's been on a crafty binge for a while, and I need to show her off.  She is too humble to do so herself.  Here are a few of her crafty bits...

We're leaving in 10 days.  Instead of just answering the question every time it's asked, she created a palm tree with a coconut on it for each day until we leave.  Each of the girls get to pull one down (alternating on evens/odds of course) each day.

I love these fingerless gloves.  Shel gave them to the Child Life person who worked with Amie every day of her radiation treatment.  I think they are beyond cool.

 Shelley is now making her own clothes.  She knit the top.  Is there anything she can't do?

Anya's classroom is the Narwhal classroom.  
Shelley made these for Anya's teachers as a gift to finish off the school-year.  So, so cool.

More news in the days to come..

Wednesday, June 25, 2014

Cancer Compromises...

Greetings All,

Let’s knock out the medical/update stuff before I get all philosophical: 

  • ·      Amie is doing really well this week, and is right now at her 23rd radiation appointment.
  • ·      As they said would happen, she’s starting to get these slight radiation burns on the back of her head.  I haven’t had a chance to take pictures of them yet, but they look like a bad rash.  They haven’t bothered her one bit yet, so I’m hesitant to bring any attention to them at all.
  • ·      She started her next round of chemotherapy yesterday, and will get that every day this week, through Saturday.  We’re hoping the medicines they gave her prior to her start this round will help ameliorate (see what I did there….) some of the more negative side effects of Irinotecan….without a doubt the worst of the chemo meds we’ve encountered this far.
  • ·      We are waiting on the travel agent’s call to get the final details on the trip to Hawaii.  We’ve asked to go the week of July 13th, just after the Teen Mom/Teen Mom 2 fundraiser on July 13th at Mt. Brighton.

Without a doubt, this was the best year of teaching that I have ever had.  I’ve had better relationships with students, felt more on the ball with certain things other years…but this was the best year overall for everything coming together in my classroom.  However…

I am so glad this school year is over.  By the end, I was barely holding things together… my filter was terrible.  I can’t remember if I said this to a parent, or in the blog…but the kids who need the most patience in my classroom are often the ones that inspire the least patience in teachers.  It was so, so hard to summon that patience for kids who were not being the best versions of themselves.  Those students are often the ones that lack the guidance, discipline, mentorship…whatever you want to call it, outside the classroom.  They need patience, and boy oh boy did I run out of it after I got back from Washington DC.  I’m very lucky I didn’t say something too snarky to someone.  Looking forward to having a few months to recharge my well of patience.  J

I’ve been thinking recently about parenting, and more specifically about parenting during a struggle such as we’re going through right now.  I know we don’t have a monopoly on struggles…and there’s tons of other parents going through really hard situations too. 

In my mind, I was thinking of many of the situations we’re going through as “Cancer Compromises”.  For instance:  Anya has developed a serious habit of denying any responsibility for mistakes with the words, “I didn’t mean to…” or “I wasn’t trying to...”  For example, Shelley asks Anya to put away her art supplies at the table, and she gets sidetracked playing with Amie.  Shelley will then ask again 10-15 minutes later.  She’ll get sidetracked again, and Shelley will repeat again.  By the 3rd time reminding Anya, Shelley’s voice will get much sharper (and this could easily be me too…but mine would sharpen on the 1st reminder) and Anya will immediately launch into a conversation about how she didn’t intend to forget, and why her forgetting was justified.  She often ends this whole episode in a ball of tears when we explain ourselves.

To me, all she has to say is “Ok, Dad.” …and then do it.  That’s all.

So.  Cancer Compromise: 
  • ·      Is Anya acting like this because this is a natural developmental milestone where she’s asserting her independence, and she needs our firmness to fall into line with our family’s expectations?
  • Is Anya acting like this because she’s having a hard time dealing with the stress of knowing that her best friend/little sister is massively struggling with cancer and could die, and has so many emotions bubbling around in her mind that she has an extremely hard time processing them, and gets overly flustered?

Just so you don’t think this is just Anya, let’s do one on Amie.  Shelley asks Amie to put her Princess nightgown back in her PJ drawer so she could wear it to bed tonight.  Amie looks right at Shelley and says, “No.”  Shelley asks Amie what she just said, and Amie says “I said No, Mommy.  I not going to do it.”

Cancer Compromise:
  • Is Amie acting this way because she’s 3.5 years old, and its natural to assert one’s independence, and needs to understand that our family does not talk like that, and her sass is rude?
  •  Is Amie acting this way because she’s undergoing an inhumane torture of radiation and chemotherapy that you wouldn’t wish on your worst enemy, thus making her grumpy, tired, irritable?

In both situations <and I could type out 20 more if I felt like taking the time>, we feel totally justified in talking to our daughters about the way our family acts, the expectations we have for communication, and how we expect them to behave. 

In both situations, we struggle….knowing what both kids are going through.  We know that as adults we are constantly wrestling with the emotions that are going through our minds, and what that does to our behaviors and reactions towards others.

Shouldn’t we be far more lax in how we react towards the kids?  But can’t that same argument be used for why I have students in class who are constantly focused on themselves, rude as hell to others in 8th grade, trying the patience of teachers on a daily basis?

I do not have the answer to this question…  and not sure there even is one other than for us/me to  our hearts and guts and live with the results. 

Anyway… just thought like riffing on this idea for a while as I wait for Shelley’s car repairs to be done (recall work).

One last thing…  it’s our 10th anniversary tomorrow.  We’re spending it together at radiation and chemotherapy, and then home.  We had grand plans this time last year, but those are on hold.  I think we’ll have a ceremonial dinner in Hawaii in a few weeks, and make that our “official” 10th anniversary.

I did buy Shelley an awesome present though.  I can’t wait to give it to her.  I have a problem with things like that.  It actually hurts me to be patient.  So I will now shut up…

Finally, pictures!

I've long showcased Anya's drawings here, but not sure I've shown you any of Amie's "Persons".  
I love them, but they can be profoundly creepy in an awesome way.
Put a knife in any of their hands, and they can easily jump into a horror movie.  MUAHAH!
But I possibly love them even more because of that.

Not sure if any of you have as many apps as I do going on your phone, but I've recently become a big fan of the Google app that hooks your pictures up with Google+.  If you take a bunch of pictures in succession, the app recognizes that...and then automatically makes pictures like this for you.  In some of them, they make an animated .gif, in others they arrange them in cool ways.  Anyway, I thought this one was cool, and immediately made me think of The Brady Bunch....with cloned Amies.

This picture got a ton of love on FB yesterday, but I wanted to highlight it for another reason.  I know a LOT of you are passionate Detroit Tigers fans.  If you look at the door behind Amie, that's the Child Life playroom in the cancer infusion clinic, where she and others get chemotherapy delivered.  This room was sponsored by Brandon Inge and his wife.  
I know nothing about this guy, but love that the room is a place that she gets lots of enjoyment out of when she has the energy, and his donation made that possible.  :)

We went to Book Buddies last night at the Howell Carnegie Library.  This was in their Build It room, while we were waiting for it to start.  
I love love love how Anya is always willing to take a silly picture with me, no matter what it is.  

Amie hasn't done a scrunchy face for me in a long, long time.  He's an update with her sheepdog hair.

Have a great day everyone!

Thursday, June 19, 2014

What a week...what. a. week.

What an absolutely surreal week.  Truly.

Here's a few highlights:

  1. We were still in school today, and it is June 19th.  June 19th.  When I first started teaching, we were always out of school by the end of the first week of June.  There's nothing like teaching in khakis that are wet to the touch from sweat.  I was going to say moist to the touch, but that would be uncouth.
  2. We lost power for 2.5 hours on day 1 of final exams, and had to sit in the dark for several hours.  When the power didn't come back on, we bussed the kids to the HS to eat, as we have such a high percentage of kids who get the majority of their meals at school.  As soon as we left, the electricity came back on.  We came back to have two more hours at school.  
  3. An article about Amie was in the Livingston Press and Argus on Wednesday.  That article then got picked up on Thursday by the Detroit Free Press.  That article (with modifications) then got picked up by, due to the inclusion of the Teen Mom/Teen Mom 2 participants.
  4. We were tentatively approved by Make-A-Wish for our request to go to the Aulani resort in Hawaii.  There's a bunch of stuff that could derail it, but as of right now, we're headed there for 5 days in about 3 weeks.  Crazy.

Yeah...  what a week.  What. A. Week.

....and we got the results of our Spinal Tap back and we're happy/proud/elated to announce that Amie's cancer has not spread to her spinal fluid.  YAY!  That is a giant thing.  Massive.  Huge.  

There's a TON of things I could write about, but honestly, I just want to run around and celebrate and not be writing at the moment.  Please excuse me, Shelley and I need to dance around a bit.

<Insert Counter-Argument Figure on Shoulder>  To temper our enthusiasm, it might be appropriate to note that having a clean Spinal Tap means that we're going to have another 6 months of bone-blistering chemotherapy starting soon...  Amie will lose all her hair again, be in the hospital for days/weeks on end, and that will go on for the remainder of 2014.  It will be awful.

<Kicking Counter-Argument to the Curb.  PUNT!>  But that's all about next month.  Let's focus on now.  Now?  We've got something to celebrate.  Amie's cancer has not spread.  I'm done with school after noon tomorrow.  TONS of people are reading about Amie in newspapers and websites across America.

Tonight's for the good stuff only.

As a final moment, here's a picture from the fundraiser Shannon did for us almost two weeks ago.  So many good shots, y'all need to go give her more of your business. woo!

Saturday, June 14, 2014

Samson lost his hair too....

This week was a busy week.  I'm in the process of wrapping up school, and all the panic and elation that that sort of thing entails.  I never in my wildest dreams thought I'd be in school until June 19th.  Ugh.

Amelie has no real interest to take pictures these days, for whatever reason.  However, according to Shelley, if you give her the opportunity to take one silly picture, she'll do one serious one as well. 
Here's the evidence to that.

Shelley and Amie got the opportunity to  head to Grammie's place on Friday, while Anya had a full day of school.  She usually has half days each friday at CSA, because they do planning and professional development each Friday.

As some of you might know, Grammie has a massive flower and vegetable garden.  Apparently, the last few weeks have been plentiful to her garden with the heat and wet.

Of course, in Shelley land, you must process and store those fruits!  Strawberry Jam it is!
She made a LOT of jam.  I'd guess 16+ pints of it.  
The girls will eat that for the next 12 months, so it's a good investment of an afternoon.
<edit:  Shelley, ever humble, wants you to know that she only made 8 pints of jam!>

Shelley had an appointment to meet with the couple from Teen Mom this week, to plan out the fundraiser that's going to happen on July 13th.  She said that they were really kind, super-good with Amie, and of course Amie charmed the living heck out of them, as per her usual habits.

Amie loves to tell jokes, and she's been telling this one all week.  
Thanks Janell and Rawlin for providing the gift, and the joke.  
Both were well received and we're super appreciative.

Firstly, I love the picture for a lot of reasons.  She's playing like a regular kid on a slide.  She's happy, and her hair is going static crazy.

However, take a second and look how much hair she has underneath.  
The picture above was shot on Monday June 9th.

The picture above was shot tonight, Saturday June 14th.

What is it about hair that makes things so much more real?  We tie so much to virility, power, and ability in this culture to the hair.  Wigs, rogaine, toupees....we seek to cover up our loss of power.  Or else we cut our hair as a sign of mourning, as a show of change or harnessing our own destiny.  Britney did it, Miley did it, Samson did it.  When kids lose hair (and lose hair again) it punches us in our gut, because it's such a powerful manifestation of illness.

Anyway.  Amie lost all this hair since Monday.  Each day it was just....gone.  They had said that most likely she would lose some around the incision site, but warned that it could be worse.  Looking at the next three pictures will prove that it's worse.

When her hair is down, you still can't see much as far as hair loss.  Scrunchy face still wins.

Medically, it was a normal week for us.  
  • Amelie continues to move around more comfortably, and needs far less assistance in her movement.  That's a total plus. 
  • We're now 1/2 way done with radiation, and Amie continues to amaze everyone with her ability to cruise through what is nightmarish for some.
  • We've got the lumbar puncture to check for the spread of the cancer <with all that information entails> for Wednesday.
As a final note, we met with the Make-A-Wish people tonight at our place to discuss our views on Amie's trip.  After much thought, much weighing the pros and cons of all the things we'd hope she'd get to do, matched with our fears of complications, we've requested a trip to Hawaii.  

There's a resort there that's specifically tailored towards families, and is owned by Disney.  It's called Aulani, and we're really hoping it falls together.  If Amie has no energy, she can sit in one of our laps and we can enjoy the quiet serenity of the waves on the beach.  If Amie has a massive amount of energy, we can swim all day to our heart's content.  It offers flexibility to us, and instant access to modern hospitals if needed.  Let's hope it falls within what they can offer us...

<edit:  Shelley said that I didn't have anything uplifting in this post, and it was too much, so here's an addendum>

I can't even explain, nor do I have the words to do so, to talk about the generosity of all of you over the last few weeks.  Between the BWW fundraiser, gifts that have found themselves to us in the hands of friends and postal workers, or the fundraiser that Shannon threw last week, it's beyond overwhelming.  (In all seriousness, go give Shannon some business.  She's great, and really got the girls to open up to her!)    So thank you all.  I feel bad that I don't have anything witty, funny, sarcastic, or.....  whatever in me for this post.  I've got nothing for today.  I'll go digging for it tomorrow.

More news after we get the LP back on Wednesday...  Hope all is well with each of you!

Saturday, June 7, 2014

Sto lat, sto lat, Niech żyje, żyje nam

Greetings All!

To get the Amie medical stuff out of the way, we're seeing some serious improvement in her walking since the start of her chemotherapy/radiation regimen.  She's far more tired, sure, but we're seeing a far more stable little girl walking around.  Got to like signs of improvement.

As some of you might know, steroids can often cause facial swelling.  I'm putting this picture here not because it's a good picture, but its a good example of the swelling that we're seeing in Amie's face.  Her "Spider-Man" mask is much much tighter these days.  It hasn't caused a problem yet, but we're hoping that the cessation of the steroids this past week will alleviate the need to create a new mask for her.  Here's for hoping!

Thank you so much for clicking on the ads.  It's making us a tidy sum of money.  Crazy.  
Keep it up, faithful readers!

Anya turned 7 on Friday.  For those of you who weren't around back then, she was born during finals week in 2007, approximately 8 weeks early.  For our 3 lb 5oz preemie, she's doing pretty darned well.  

This is a picture of Anya on her way to school, the last day of being 6.

The girls had gone bowling a while ago, and part of the birthday celebration was to go bowling on Friday.  I am so impressed about their ability to make bowling easier for kids these days.  This easy contraption was the best in getting even Amie to be able to bowl, once the bumpers had been raised that is.

Birthdays are a great time for Shelley's craftiness to emerge.  The special birthday girl gets to have her special birthday chair decoration, underneath her special birthday banner.  Special birthday hats are matched with special birthday cakes (see below).

This is a strawberry ice cream cake made to look like a ladybug.  Shelley cut it before she took a pic, of which she was heartbroken about.  I think it still looks dandy.  Don't you agree?

Allyssa, Amie and Anya (nice alliteration, eh?).  Selfies.

I just have this image of Amie at a car show, in her brand new Tesla Roadster, looking basically the same.

Love, love, love this picture of Anya.  Auntie Beth took it, I monkeyed around with it.

We also took a bunch of wacky pictures.  Of course, being that I'm in this one, it was the best.
I live for my vanity, as you can imagine.  I am frequently voted best dressed, and hottest all around.

Before you click on the video below, be aware that the cuteness meter is about to blow apart.
There is nothing practiced about this video.
This is the way the girls act towards each other when they're both being kind.  It's not constant by any means, but when their moods are aligned, this is normal.

Shelley and I got the chance to see The Fault in Our Stars this afternoon.  If you click through on the name in the previous sentence, it will launch the trailer to the movie.  Give the trailer a watch if you haven't seen it yet.  I'll wait.  :)

The movie was great.  Really enjoyed it, really and truly.

My sister said we might not want to see it, as she wasn't sure that we would be able to handle it with our current mind set.  We took her advice in stride and went to see it anyway.  

Here are some of my thoughts, walking out of the movie. 

  • Firstly, it was sad, but not overwhelmingly so. I can honestly say that in my daily life, no matter how upbeat I might seem on a daily basis, I am profoundly sadder than that movie.  Knowing that, the movie was much easier to absorb than it might otherwise we're living it in a lot of ways.  I might not be Augustus Waters, but I am definitely Mr. Lancaster.
  • I love the book, but I realized watching the movie, I love the book for different reasons than most other people.  I love it in spite of the love story, and not because of it.  Shelley asserted that without the love story, it falls apart, and I agree.  It is the glue of the story.  However, I love the book/movie because it gives me hope.  Yes, my friends, TFIOS gives me hope.  It gives me hope that I can survive this horrible mess.  Cancer is a grenade.  Hazel is totally right.  However, all people do not die from the grenade, and honestly most people don't.  We get hit with shrapnel.  We are the walking wounded.  In our wounded states, we get to decide HOW we react, how we recover, and where we go after the explosion.  It gives me hope that I can survive this, no matter which way it turns out.  
  • As I mentioned in a previous post after I watched X-Men, I loved the Professor X quote about witnessing pain/suffering.  I took the time to look it up this time:  “It’s the greatest gift of all, to bear their pain without breaking. And it’s born from the most human power – hope.” There's a scene in TFIOS where Isaac's girlfriend breaks up with him (not spoiling anything from the movie, it's super early, I swear) because she can't bear to be with him as he goes totally blind.  I think about that, and the previous post about Comfort IN, and Dump OUT.  She was dumping in, and breaking from witnessing his pain.  People often say that Shelley and I are strong, and I guess we are.  But in the end, we're only doing this for Amie and Anya.  We've never been surveyed about whether or not we're interested in bearing this pain.  We just do it because it's necessary, it's required, and it's our lot in life.
  • I want to talk about more...but I won't for a while, because it has mucho spoilers for the movie.  Believe it or not, there are many people who haven't read the book, nor seen the movie.  I'll do that in the future.  :)

Ok y'all.  Time to post this bad boy and let it ride.  Two weeks of radiation are done, and another 4 to go!  Woo!  Now if we could just get the Irinotecan cramping under control....