Saturday, September 20, 2014

It's Long-term Hospital Stay Scavenger Hunt time...want to play?

I’ve previously talked about the power of expectations, and how with proper notice, we feel as though we can get through just about anything.  Give us a week to wrap our heads around a brain surgery that will take 12+ hours?  We can do it.  Radiation every day for 6 weeks?  No problem.  Just let us ponder it.

Give us a seizure in the middle of the day, during chemo infusion, with no notice?  That’s not funny.  At all.

So, to back up… 

Amie was scheduled to go in for a 5-day chemo infusion stay on Tuesday.  She received her first dose of Ifosfamide and Etopiside on Tuesday with no negative side effects.  She was scheduled to get the same dose every 20 hours until she’d received 5 doses.  This is what she did 6 weeks ago, with no negatives (other than the hair loss…)

As an aside, all of this is being told through Shelley’s multiple, multiple retellings to me and doctors, as I wasn’t there.  More on that later.

Amie had just received the full dose of Ifosfamide, and they were 10 minutes into the Etopiside dose, when Amie fell back from a sitting position on the bed and started to have a seizure.  Shelley pressed the “Staff Assist” button that’s above the beds, but it didn’t make a sound or give her any visual or audio alerts to acknowledge that she’d pressed it.  She waited a sec to hear something, didn’t hear it, and then took it up a notch.

There’s this big blue button that says “Code” that’s underneath a plastic protector panel, just to make sure you never accidentally hit it.  Shel flipped up the panel, hit the button.  She said that within a minute there were 50 doctors and nurses in the room.  The rooms are not that large. A generous bedroom in a modest middle class home is about the size of the room.

I have this mental scavenger hunt in my head. A list of all the various things that they might give to long, long term hospital parents like us.  

Here are a few on that list:
  • Have a 12 hour surgery   - Check
  • Buy a coffee from all the different coffee stands in the hospital (I’ve found 4) Check!
  • Have an MRI – Check
  • Have a CT Scan – Check
  • Take an emergency ambulance ride back to the hospital – Check

Well, we got two new ones this week!

Firstly, we got to hit the big CODE BLUE button.  Who wouldn’t want to do that.  It’s like pulling the fire alarm, or a button that’s labeled “Absolutely never hit this button…unless you really, really have to.”  So yeah, we now know that if you hit that button, it’s like kicking a bees nest insanely hard, except the bees are all highly trained professionals whose entire job it is to wrap your daughter in the overwhelming and dedicated arms of medical care and intervention.  Those are the kind of bees that we appreciate.

The seizure lasted about 3 minutes, and Shelley said that it was quite bad to witness.  Quite freaky.  I wasn’t there because I was up in Brighton taking Anya to her first art lesson.  (Thank you people who give us money so we can do awesome things for our kids!)  Shelley called me and kindly asked me to get Anya, get her to her parents, and then get to the hospital.  I did all that and got there quick.

As I was on my way, Amie got a CT scan, and they decided to end the chemo cycle for the remainder of the cycle, and just monitor Amie to see what would transpire over the next few hours.

She did not get another seizure, and have come to believe that it was caused by Ifosfamide toxicity, which can be present in as much as 30% of the people who get it.  Some patients just have mild confusion, others get a much more severe seizure.  We’re really good at things, so of course we got the advanced response to it.  We’re good like that.

We got the opportunity to talk with Dr. Chamdin, the oncologist who deals more with body tumors like Rhabdomyosarcoma, instead of our regular Neuro-oncologist, Dr. Robertson, who is at a conference this weekend.  He set our minds at ease quite a bit talking about the seizure.  He explained the short seizures like this are really, really scary for the parent, but are largely benign (harmless) to the patient.  He said that it’s just that it’s so out of control, and external, that it freaks us out so much.  But that the Ifosfamide is really good at targeting Rhabdomyosarcoma, and that we can treat seizures quite easily.  To sum up for people who are tired like me, Cancer is much much much much much much worse than having a seizure.  Got it?  Good.  J

They observed Amie for the rest of the day on Wednesday and Thursday, and then discharged on Friday afternoon around 1pm.  Somewhere in there she got an EEG, where they monitored her brainwaves to see if she had normal brainwave activity.  Even this did not annoy her.

She had regularish results, within the bounds of what was to be expected for a kid who has been treated as much as she has.

Flash forward to 10pm on Friday night.  I had a guys night scheduled in Lansing with friends for the last 6 weeks.  I was there, sitting around a campfire.  Shelley was home with the girls, all of them sound asleep.  I got a call from the Hematology/Oncology Fellow, letting me know that they had found a positive blood culture in Amie’s central line, and they needed us to come back to the hospital ASAP.  I left Lansing immediately, headed back to Howell, grabbed my gear and Amie, and burned rubber towards Mott.

Here’s where we scored our second achievement for the list…  

  • Check back into the hospital less than 12 hours after you were discharged.  – Check!

So here I sit again.  But at least I can help out Shelley as it’s not a work day, and have the time and mental clarity to write this at a bright and early 8am.  We’ll be here for at least 48 hours while they dose her with antibiotics, and attempt to grow bacteria cultures in her blood.

Amie doesn't want me to take her picture, so this is what she does.  Will that stop me?  NO!

I want to actually create the Long-Term Stay Scavenger Hunt in a fun an whimsical way…so feel free to add comments to this blog, or to FB as to what else should be on it.  I think this could be actually fun, and not just morbid humor.  Thoughts?

Friday, September 12, 2014

Two Years. Two Years, today.

Hey All,

I had grand delusions about writing an epic post for the two-year anniversary of our diagnosis.

Today is that anniversary, and honestly, we're both so tired that writing a ton seems like an epic task.

That day is, of course, etched into my mind in so many ways.  Here are a few from me:

  • I remember that I had forgotten that Shelley had even taken Amie to the pediatrician's appointment that day.  I was so wrapped up in the start of the school year at the newly named McBride Middle School, and wanted to get the year off on a great start, as my first moments in MS at South in 6th grade were so, so hard for me.  When Shelley called me, saying that she was on her way to Mott ER in Ann Arbor, it was a shock.  My world had not yet shifted.
  • While in the ER at Mott, I pre-ordered my iPhone 5.  I was very excited to upgrade.  I pre-ordered my new iPhone today.  Strange.
  • Amie was entranced with the examination light in the ER room.  It's a massive circular light that I associate with operating rooms, and allows the light to be focused and diffused, depending on the needs of the moment.
  • I remember an endless amount of ascending specialists visiting us, so completely kind and overwhelming.  They were curious, asked a 1000 questions, yet all the same ones.  I remember Shelley being a trooper answering the same ones over and over with precision, patience, and kindness.  We didn't sleep much.
  • Amie was not very old at the time (22 months), and didn't have many words.  But she was so patient with us, and a little scared about whatever was going on, as she knew that it wasn't really normal.  But she had us both, and ultimately that's all she needed.
  • Here's what Shelley and Amie looked like, being brave that day:

Two years later, taken earlier this afternoon by Shel, we are now here:

Amie is pale, thinner, with almost no hair.  Her appetite is shot to hell, she has very little energy some days.  Her blood is crap because of the chemo, she needs frequent transfusions, refuses to have her picture taken 99% of the time unless we flat out bribe her, and she is frequently unkind due to her exhaustion.


She's consistently one of the most kind and thoughtful kids I've ever met.  She loves playing with her sister more than anything else in the world.  She giggles so freely and honestly, that it destroys you with joy.  She embraces every stinking moment of the day with her utmost.

Two days in, when we had our brain surgery, I wasn't sure how we could do it.

Two years in, I don't remember what it was like not to do it.

Two days in, we wondered if she was going to live through the night...and how we weren't sure what we were going to have left of our daughter when she woke up.

Two years later, we see what an amazing fighter she is, how strong we have both grown to be, and wonder constantly what the future will bring to us.

She's passionately alive.  She's wonderfully alive.  She's overwhelmingly alive.

For now, that's all we can ask for, and that's what we're going to celebrate.

Night all.

Monday, September 1, 2014

Ferocious gnarly viking teeth...

Good morning everyone!

I got out of the house extra early this morning in an attempt to write this blog post before I engage in some extra geeky fun. 

I’m sitting typing this in a Biggby coffee that just happens to be the first store ever.  It’s directly across the street from the apartment I had in East Lansing in the summer of 1992 through the Spring of 1993, just past where Michigan and Grand River split apart.  Makin’ me all kinds of nostalgic, to be honest.

Our brains are funny and strange things.  Did you ever think about the power of expectations?  If someone says to you that in 10 days, you’re going to have to work at 20 hour shift, you can get yourself ready for that.  You’ll have a certain kind of sick pride that you can get through it with grace and wit…or maybe just grace.  After a 20 hour shift you’re mostly brain dead.  But I digress.  My point was that if you have the warning, you can do it.  Get asked to stay 30 minutes past where you thought you were going to leave on a normal day?  Total breakdown, massive pain in the butt.

The hospital is a lot like that.  You have a general expectation that any time you walk into the building, it’s going to be a 6-hour ordeal.  Some days are much less, some days are longer.

Shelley walked into Mott on Tuesday expecting a normal 6-ish hour day, and found herself in a nightmarish 11-hour extravaganza.   We had been told that our next chemo drop was going to be on Thursday, and the visit on Tuesday was just to get blood counts to make sure Amie was ready for the next round.  When she got there, however, she found out that the protocols for the insurance company had changed, and the specific chemo that she was receiving was now only authorized for outpatient care, with IV Mesna (to protect her bladder) and fluids to continue for 5 hours.  6 hours turns into 11 hours (with traffic), and normal becomes nightmarish.  Good times.

Amie is doing alright.  Her hair loss from last blog post seems to have plateaued for the moment.

You know what’s the saddest thing about it for me right now?  Her stoicism.  She isn’t yelling, crying, screaming, or any other antics, about her hair loss.  She’s taking it in stride, like everything else. 

She said to Shelley the other day, “Mumma, I don’t think I can do a braid across or sprouts today.”  As you can see, she has this fine, wispy cap of hair left…and almost nothing else.  She can have no hairstyle at all.  It might look better shaved.  But what is she thinking about?  Letting Mom know that she doesn’t think she can manage a hairstyle, as though she’s notifying her that she doesn’t want to wear a dress today.  So impressive on so many levels.  So worthy of teaching all the adults in her life what’s the proper way to deal with adversity.

As you can see here, Shelley can make anything look good, as these girls make it super easy to make things look good.  Keep me out of the picture though...

So the week of September 12th brings us two things I wanted to spent a little time talking about...

The first of which is the two year anniversary of Amie's diagnosis.  How in the heck have we done this for 2 years?  I remember meeting some people in clinic and hearing them talk about how they had been in treatment for 2 years and thought that there was no way we could ever do that.   Well, we are.  We have no idea about when treatment for Amie might ever be done as we're in seriously uncharted territory with her specific diagnosis....  but we're going to keep plugging along.  2 years.  Yikes.  Will we hit 4?

Next, on Saturday September 13th is the 10th Annual Tim Watson Golf Tournament and fundraiser.  We are one of the two families they have chosen to donate towards, as I've spoken about here previously.  I spoke to Kim Dybicki yesterday, and she said that anyone who wishes to donate gift certificates, baskets, or anything of the like for their charity raffle would be greatly appreciated.  Email her here to get in touch with her about that.

I originally posted this on Facebook, and wanted to close out the post with my pre-school preparations.  Anya is helping me garner the proper ferocity to be a Viking (the mascot of my middle school).  I plan on wearing the hat the first day of school to help get me into character.

Have a great day, y'all!

Thursday, August 21, 2014

Caught up...

I think blogging is a lot like working out. 

When you’re in a good swing, it becomes part of your normal routine, and you just do it, and know that it’s not hard.

When you get out of regular practice, it just backs up and backs up, and you start creating reasons to avoid it <there’s so much I have to write about!> that you just decide to play more video games instead.  Ahhhh….

So yes, I have a block of time here for the next three+ hours while Shelley has a minor surgery (she’s having hear ears removed so that she doesn’t have to listen to me anymore), and this seems like the perfect time to do some serious writing.

I’m going to do the Amie update stuff up front, so those of you who are not overly interested in the inner-most workings of my family and my mind can opt-out of the blog post early.  J

Amie got done with her first round of chemo (for this cycle, which is actually her 15th round of chemo, according to Shelley) on August 9th, and has handled it great.  She hasn’t vomited once, and we’ve gotten really quite good at anticipating when to give her Miralax to help with the...other side effects.

However, we knew it was coming…She’s started to lose her hair again, big time.  She lost about 30% of her hair in the last 24 hours.  Here’s what came out last night after she was sitting on my lap, with her head against my chest.

It is what it is, but it’s just sad.

Also, Amie’s memory seems to be really wobbly (like her movement) these days.  Dr. Robertson says she believes it’s chemo induced (and temporary), and not radiation brain damage cognitive deficits.

For example, in June, Amie could sing the entire song of “Do you want to be a snowman?” from Frozen.  Now she knows the first line, and then she gets a really confused look on her face and says, “I  fregot”.  Same with shapes, letters, and some words she was already working on. 

We’re hoping that it is temporary, but let me tell you, to see a kid’s memory literally disappear….her quickness disappear, and her confidence in her memories disappear…it’s a kick in the pants.

Other than that, things have been really peaceful and quiet.  Some would say boring, but that has such a negative connotation, and the new me has gotten so much better at appreciating the silent periods in life, and living more in the moment.  I will never say I’m good at it yet, but I will say that I’ve gotten much better.

Anya had Special Days camp the week before last, and as it was the last 3 times she’s gone, it was amazing for her. She walked onto the bus with no fear of being away from Mom and Dad for a week, and had the best time ever.  I love the idea that she has this place that is only hers, and that she can count on, year after year until she’s 18.  Even after, if she wants to be a counselor and work there after she is done being a camper.  So, so cool.

Working backwards…  Hawai’i. 


I think that when I die, it will go down that Aulani is the nicest place that I have stayed in my life.  Part of that is Make-A-Wish granting our ability to get there, and part of it is our room being upgraded by an awesome guy….  But either way, it was magical for the girls and I.

We’re a month after getting back from the trip, and they haven’t stopped talking about it.  Whether it’s the family time that we spent on the beach, in the water, on the waterslides, in the lazy river or just walking around, they enjoyed it on a level that I think they’ll remember it for a long time.

People keep asking them “What was their favorite part?”, and Anya has a really hard time answering that.  I think part of that is that it was just overwhelmingly great, and a treat to spend so much time as a family together, not worrying about any of the cancer stuff…and just being as normal as possible. 

A good story about the return trip:

On the way to Hawai’i, we had a calm one hour layover in Phoenix, so we assumed we would have the same on the way back.

The flight from Honolulu to Phoenix was smooth and kind to us, going overnight and landing at 7:30a in Phoenix.  We knew we had to board the next plane at 8:40, and shouldn’t have been a problem being that we had only carry-ons, and were in the same airport.

We were wrong.

So we land at 7:30a, and start disembarking within a few minutes.  We were in the very last row, row 35.  At 8:00a, we still hadn’t moved an inch from our seats, due to the number of people in front of us.  By 8:10a, we are off the plane, and look at our tickets to see which gate we’re loading on.  BIG MISTAKE.  NEWBIE MISTAKE JASON!

We move quickly across the airport to our gate, which is about a mile walk away…..ya see, Phoenix Sky Harbor is way, way bigger than Detroit Metro Airport, and our gates were at opposite ends.  We make the quick walk between them (knowing the doors will close 10 minutes before takeoff) and arrive to see that they had moved our gates back to about ½ way between the two points.

I grabbed all 4 carry-ons, put Amie on Shelley’s back, and we started to run.  I’m not a small guy, as you might know.  Now imagine what I look like with my messenger bag, Anya’s backpack, my backpack, and Amie’s string backpack all slung around my arms, neck and back…it must have been quite a sight.  At one point, rounding a corner, Anya’s right shoe flew off, and she grabbed it and kept running.  She was crying by the end, but she made it (with both shoes off and in her hands by the end).  We made the gate just in time, and made the flight.  It was straight out of a bad movie.

The last thing I had to write about was the fundraiser we had with The Link Fund and the two couples from Teen Mom/Teen Mom2.  To start off with, everyone involved was incredibly nice.  Insanely incredibly nice.  You have these preconceived notions about what “reality TV” stars might be like, and you’re hesitant.  But they were sincere, genuine, and kind people.

The thing we couldn’t talk about beforehand is that we knew that the MTV cameras were going to be there.  We didn’t want to have that part get out because the event might have quickly become a madhouse with people who just wanted to get on TV, and would have tainted the spirit of the event.  But from what I’ve been able to figure out so far, MTV is doing another season with the original cast members of Teen Mom, minus one who seems to have gone off the rails a bit.

It was so incredibly cute to see your daughters performing songs from Frozen to groups of people, some of whom have Twitter followers in the millions.  Amie, of course, charmed the pants off everyone, and Anya loved doing art projects with Javi and Kailyn’s son. 

I got an email from a former student who works at a local chapter of the Boys and Girls club, and the kids there (some of which are former students) got together and did a Team Amie walk.  I was so proud and humbled by their actions, and wanted to give them a little love.  Thanks y'all!

I can't remember if I've talked about this before, but Shelley and Amie (as a means to develop rapport and break the ice with Amie meeting a ton of new people this summer) had a habit where they asked every new person they knew "What's your favorite color?".  They then came home and Anya graphed the results.  (Go Simons and Churchill!)  Mott recently included their summer survey in their Camp Little Victors mailing that went home.  Good stuff!

Someone asked me the other day when I was at school how my summer was…and I think the proper answer would be overwhelming.  It was overwhelmingly good to see my family having so many normal moments.  It was overwhelming to see so many people coming together to raise money for my family.  It was overwhelming to go to Hawai’i in such bittersweet way.  It was overwhelming for Amie to have radiation every day for so long, even though I had to be part of so little of it.  It was overwhelming to see Amie starting to lose her hair (again) and her ability to remember things so quickly.  Yes, overwhelming is proper.

SO… I’m going to call this caught up on the blog, and move on from here.  School starts on Tuesday, which means I’m back on a schedule, and much more able to keep focused on doing blog posts.

Hope all is well with each of you.

ps.  In case there’s blog readers on who aren’t on Facebook…I’m collecting Xbox 360 games for the kids on Mott’s cancer ward.  If you have any extra Xbox 360 games laying around and would like to donate them to me, send me an email and we’ll figure out how to get them there.  

Tuesday, August 5, 2014

He's Back!

Greetings All!

Sorry I took most of the last month off blogging.  I wasn't in a good head space to do it, and figured that it was better to not post than to post some angry/whiny/annoyed post. But playing a bunch of video games, chilling out, and being geeky has been good for my head, apparently.  Or at least I'm good at faking it right now.  :)

So today starts the next 6 months of treatment for Amie.  We've just settled into our room on 7-East, and we're scheduled to be here for the next 5 nights.

We met with Dr. Robertson a few minutes ago, and she was able to show us the images from the most recent MRI.  She lined up the images from the late May MRI where we knew that the tumor was growing aggressively, and then the MRI from just after we got back from Hawai'i.  

They had told us that the change was substantive, but it was more than that.  I'd say that it has significantly decreased, possibly by as much as 30-40%.  Let me tell you, that's quite cool to see.

Anecdote #1:  Amelie loves the hospital.  LOVES.  She's been talking about how excited she is for her "sleepover" at the hospital for the last few weeks.  She was originally scheduled to go inpatient a week ago, and her blood numbers were not high enough (platelets, specifically).  She was devastated.  I don't know if it's the number of shows she gets to watch, the attention from staff, the 1-on-1 time with me and Shel...but whatever it is, she loves it.  The picture above is her waiting today in clinic.

Summer has been great for the girls thus far.  We've been doing our best to make it as special as possible, knowing that the next 6 months is going to have a LOT of hospital time.  A LOT.

One of the things that I wanted to do last summer was to do a movie night on the ceiling.  It was a smashing success!

I projected the movie on the ceiling, and the girls nestled in their snuggly blankets (we cranked up the AC to make it movie theatre-like), and watched the movie.  Mommy's special popcorn, of course, was delivered mid-way through the movie.

The above is Amie's latest and greatest artwork.  Anya has been teaching her how to draw things, and this is her Lion.

Anya's instruction is the best, and I don't have a copy of her directions...she draws out each step, just like the books she uses.  Step 1:  Draw a circle.  Step 2....  Great stuff.

Anya's artwork continues to amaze me though.  The level of detail that she includes just stuns me.  She is drawing with more detail, more patience, and more skill than nearly all my students last year.  
Cool, eh?

Anya is at Special Days camp right now, for the 2nd year.  No hesitation at all to leave us for a week.  None.  She's fearless to leave...  makes me proud.  :)

Special days camp posts pictures each day, and this is one from yesterday.  
She looks miserable, don't you agree?

Another thing we were introduced to through Mott was an organization called Peach's Neet Feet.  They give away hand painted canvas shoes to children in situations like Amie.  You send in a questionnaire, and a while later, voila!  Here are the shots of the super-special shoes she received.  

I realize that I need to do a full blog post about the Teen Mom fundraiser, as well as the Make-A-Wish experience.  I'm going to do those this week.  
I figure 3 long blog posts are better than 1 GIGANTIC one...

One last thing!

As many of you know, I teach in Belleville, and was at the HS for 8 years.  During that time, I had the pleasure to work with Rachel and Ryan Dybicki, as well as Sara Watson.  They were all amazing kids, who constantly worked hard and were awesome to have in class.  Top notch kids. 

Tim Watson is Sara's older brother, and Rachel and Ryan's uncle...and he died of brain cancer in 2006.  The family started the Tim Watson Memorial Golf outing as a charity to help out families suffering from cancer diagnoses.  They have chosen us to be one of the families who are the beneficiaries of the charity this year, once again showing the amazing generosity of people in our communities.

If you want to be part of this, click here to email Kim, or to get more information.

More tomorrow.  I don't want to wear out my welcome now that I'm back!
Hope all is well with each of you.

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..