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.'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!


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?


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.