Wednesday, October 29, 2014

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

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

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

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

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

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


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

So what does that mean from here on out?

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

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

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

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

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

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

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


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

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

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

But I think me cracking jokes, making people feel better, somehow makes me feel....less burdened by it all.  I have no idea how.  I've always read about the British habit of "taking the piss" out of someone and something, in the sense that you make fun of someone/take them down a few pegs if they're getting above themselves.  I kind of feel like making jokes about the cancer, about the terminal nature of it, about the whole freaking endeavor is just part of me taking the piss out of cancer....removing some of it's power over me, in thinking that it can destroy me.

Sure....it's going to destroy parts of me, and hopefully fertilize others.  That's what really awful things do to you.  I got divorced 14 years ago (actually 11.11.00), and it destroyed me...but I never would have been a teacher if that hadn't happened.  I never would have had the stamina and drive to re-do so many of my classes to get there.  


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

So.

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

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


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

Sound good folks?

Good.

Saturday, October 18, 2014

4th Birthday... looking back and forward

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

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

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

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

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

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

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

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

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

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


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



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

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


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



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


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


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



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


Tuesday, October 14, 2014

2 in a row? What the heck?

Good Tuesday evening to all ladies and gents, boys and girls.

We come to you tonight having seen the results!

Ok, maybe not me, but Shelley was able to see the actual MRI results on a computer screen tonight, with Dr. Robertson.

When they view the results, they view them side by side, to give the best comparison.  Shelley was able to do that tonight, and here’s the paraphrase of her report to me:

  • The tumor was demonstrably smaller, possibly as much as 30% smaller than last time.  
  • Note that the last MRI showed a significant decrease as well, with the radiation starting to really kick in.
  • The tumor was less dense, and more broken up, which means that the chemo and radiation are both working.

Moving forward, provided that Amie’s blood counts are adequate come the week of the 28th, we’re going to get another full round of the Ifosfamide that likely caused her to seize 4 weeks ago.  The evidence is that the Ifosfamide is a direct threat to Rhabdo, so they’re going to use it, and pre-medicate Amie against seizures.  Yay for threats. Boo for seizures.

So, what the hell!  That’s two really positive MRIs in a row.  One could get used to this kind of thing.

Of course, this is all a wicked good news.  Dare I begin to believe positive thoughts?



Other stuff…. 

Amie is turning 4 years old this week!  This is actually the first birthday that she hasn’t been in the hospital since her 1st.  (Am I jinxing anything by noting that?  Hopefully not.)  We’re really, really hoping that we don’t end up in the hospital this weekend.  :)

I have a ton more stuff I’d like to write about, comment on, riff on, and the rest…  but I don’t feel like writing right now.  SO.  

I’m going to sign off, and write a blog post later this week with more more more.

A few last thoughts tho:
  • Jillian’s marathon is on Sunday, on my birthday.  So looking forward to going down into Detroit to watch her, maybe check out a few places with the girls, and have an overall great time.
  • Cranbrook is once again shutting down for cancer kids on Saturday, Amie’s actual birthday, and we’d love to go there.  But I think something more important is raising it’s head.  More on that later…
  • Shelley saw a double rainbow today after getting home and hearing great cancer news.  Great sunrise, great sunset, double rainbow….good stuff!

Tuesday, October 7, 2014

Stretching out the words to see where they go....

In summer, we spend so many lazy days.  We have all the time in the world, and most days we don’t go anywhere.  I’m not complaining, at all.  It’s just funny juxtaposed with our lives in the fall.  I have no idea how things stack up to make us so busy, but we have our next 3 weekends packed full of activities, and our weeks are pretty busy too.

For example, this past weekend…  We were referred to a group called Horses for Hope, and had an amazing time in the farmlands west of Flint watching the girls ride horses, eat, and do crafts for a few hours.  The volunteers who have been putting it on (for 15 years now) were so patient, so kind, and so welcoming that it was beyond awesome and overwhelming.




Anya was her normal fearless self in those situations, and Amie was so fierce too.  After the experience with the dolphins this summer, we weren’t sure how it would work out with horses.  But she was the first to go out and ride, and showed no fear at all.  She remembered all the horses names, is still talking about it, and kept wanting to go again and again.

Sunday brought us to a free concert at Brighton High School of the Detroit Symphony Orchestra.  The director/conductor of the orchestra, Leonard Slotkin, recently turned 70, and there was a birthday celebration (and song) for him to start the concert.  They handed out kazoos to everyone going in, and Amelie loved loved loved her kazoo.  She played it for most of the concert, albeit quietly due to my urging.





At one point in the concert, a kid (around 6ish) came up to conduct Stars and Stripes Forever from John Phillip Souza.   Mr. Slotkin came and sat in Amelie’s seat (we were really close to the stage), and when he sat down, Amie was covering her ears.  He laughed a good laugh and said to her, “It’s not THAT loud”, and everyone around us giggled.

Watching the kids have so much fun, and enjoy themselves with the music that much, was really a huge boost to my mood.  When we were getting ready to go, I was all grumpy thinking that it was going to be a failure, and that Amie was going to demand to go, much like she did with my movie expedition earlier this summer.  Once we got there, it reminded me of how willing to try things that my kids are, and how I need to remember that at times.  I love it when I get kicked in the pants a bit by my kids.

Today, we’re in Mott for a single overnight chemo drop and hydration session.  This was the round 6 weeks ago that Shelley had to do all in one day, and do hydration outpatient at home…frustrating us to no end.  Apparently the outpatient part of things was a mistake/misunderstanding of new changes to insurance payments, of which they apologized.  So we’re inpatient for one night, and are scheduled to get bounced out in the morning.



Something that was really amazing tonight…  Dr. Yanik, who was our Pediatric Hematologist from Amie’s stem cell transfer 18 months ago stopped in to see her.  For those dutiful readers, you might remember that he was the Doctor whose son organized the Make-A-Wish fundraiser between U-M and MSU, where I got to meet Maddie for the first time. (I feel like I’m name-dropping, but man what great names to drop).  Anyway, he stopped in, and prior to tonight, she has never wanted anything to do with him.  It was a guy thing, and nothing personal. 

But she has changed so much in the last 6 months, in so many ways… he came in, and she was immediately engaged with him.  She talked with him for a few minutes, asked him his favorite color, and even exchanged funny rhyming greetings with him.  But more than anything else, she let him take her picture in these really über cute ways that she is utterly unwilling to let us do these days.  She posed for several minutes in all these different ways with him, and then even took his picture with Baby Jumping.

The reason I go through all this exhaustive detail is to say how much I am impressed with what a great kid she’s becoming.  Through the last year, she’s gone through all of the fussiness of being 3, and is growing into that magical 4-year old stage that I loved so much with Anya.

For another example, over the last few weeks, she’s discovered manners.  Now, we’ve been modeling manners for years now.  Please, this.  Thank you, that.  If you have a moment, could you get me…  But all of a sudden, all the manners clicked into place.  She’s got all these internal skills and behaviors that we’ve been building, and they’re all coming into their own.  But, all that internal stuff is still trapped into this gorgeous but apocalyptic little shell.  Ugh.


Yep.  That’s the problem, eh?

Moving past all of that, we’ve got our next MRI on Tuesday of next week, so you can expect a quick update on whatever that might bring to us.  As you can imagine, this is a big one, as it will tell us what the treatments are bringing to bear with the new diagnosis of Rhabdomyosarcoma.



To end the whole thing on a far more positive note than that last paragraph (as it is my wont to do), I give you the two sides of my family.  

The stately and poised side.

The off-kilter and wacky side.

Yin and Yang.

Pot and Lid.


Work and Rest.


Thanks for the support y'all.  More to come in the days ahead.

oooh, one more thing.  This video:



If you want to see more Amie videos, here is my YouTube channel.

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.

However.

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!