Tuesday, May 27, 2014

A post in reverse from my normal...

Just because I feel like being wacky, I'm going to do this blog post in reverse.

Normally, I'd give you a bunch of medical information, and then finish it off with pictures.  

Now?  Backwards time!

Anya's school had a volunteer appreciation concert today at 1p, and I was able to go to it as I did not go to work today, for a variety of family reasons.  They had written a lot of the songs themselves, and then sang "It's a Wonderful World" and "Hakuna Matata" on top of that.  It was really nice!  Great job Narwhal, Dusky, and Hector classrooms!

They also had some of the kids' artwork on display.  This is Anya's self-portrait.
I tell ya, the kid's got more talent than me, hands down.  It's proof that mastery = practice.

This is the Child Life play area in the radiation quarters of the U of M Hospital.  Due to the cost, they do not have a "children only" radiation suite.  Kids get their radiation treatments in the adult suite, and we had just finished here.  Note the redness on the left side of her face.  
You'll see what that's from in a second. 

All photo credits for the radiation shots go to Shelley, as they were shot last Friday.

Amie starts the process getting loaded onto this bench, and is lined up precisely.  They have previously made a mask (far right) that is made of similar material to a broken arm cast.  

They then snap the mask into place, with push-rivets attached to the side of the mask that physically attach her head to the table.

Once her head and body are positioned correctly, they scan her head to assure that it's 100% in the correct location, as the radiation needs to be delivered to the exact spot to avoid damage and enhance treatment possibilities.  

Amie is covered with a blanket, she holds Baby tight, and she stays "flat like a board" and "doesn't move a muscle" for over 15 minutes.  Dr. Hamstra says that she's the youngest patient he's ever seen who can do this treatment without anesthesia....by a lot.

I'm including this one not as overkill, but to show you just how tight this mask is.  It's smashing her face in pretty good, and the damned kid never makes a sound about it.  Helps remind you to stop complaining about little stuff, eh?

Bet you didn't know hunting the elusive "Anyapants" was in season, did you.

I caught me a good 'un.  Them's tasty.

Shelley decided we needed to teach Anya something about sports.  We started here.  

As you might imagine, she had about as much desire to eat beef jerky as she did to learn how to hit a ball.  But as with everything else, she was incredibly patient with us, and did her best.

Shelley has really gotten into the selfie craze, even pushing me to take them.  Since I look like a goof in them, I have to push that further.

We spent a few hours on the beach in Luna Pier on Sunday.  Gorgeous day.  Learned that all of Amie's treatments and medicines make her HIGHLY sensitive to the sun, no matter how much sunblock we put on.  Have to make sure we have sun shelters all summer, or only play in the shade.

Saw this on FB the other day, and really enjoyed it.  It aligns with so many of my successes, and so many of my failures.  Wanted to share it.

Memorial Day...I had every intention to write this post yesterday, with all of Memorial Day's symbolism, but didn't have my heart in it, and knowing that I was seeing Dr. Robertson today made it easier to delay.

Over a year ago, Amie was in a promo spot for a challenge between U-M and MSU.  It was there that I met Maddie, the 8th grader from Woodhaven that I have praised on previous blog posts. (She's on the far left) I got to know her a little more over the next few months, and then she took a massive turn for the worse and passed away last July. 

I was reading the paper on Sunday morning and saw an article about a Harland High School student. Mid-way through the article I realized it was another kid from the Make-a-Wish video, this time the kid on the far right.  Pulled me apart quite a bit reading that.

I still think about Maddie a LOT, and about the strength that it takes to be a parent of a kid with cancer.  We are constantly told that Shelley and I are strong, and that we are inspiring...  and I feel like anything but some days.  For those of you who have read "The Fault in Our Stars", I am Hazel's Dad.  Not a real presence in the book by any means, but when he's there, he's in tears more often than not.  I found myself tearing up over and over and over at Anya's school today.  To reference Fight Club, I am Jason's overactive emotions.

So while Memorial Day is a day to be spent honoring the nation's soldiers, I think it might just be alright to honor kids who are soldiering on valiantly in the face of cancer too.  Any veterans out there who disagree with me, let me know.  I don't think I'm offending, but I might be.  Amie's a soldier in my book anyday.  

Her orders come from somewhere outside of her ability to respond to them, she has to follow them to a T lest a consequence happen that would be overwhelming, and as I've heard said in many films, "Shit rolls downhill."  Yep.  She's a soldier.

Finally, to the medical stuff:
  • Amie has been far more balanced the last few days, and got some of her energy back as well.  Not that you knew that she had no energy, because I haven't blogged in a week.  But she spent most of the last week with no energy at all.  They're attributing her increased balance to the steroids she's now on, as it should decrease the intracranial swelling that was going on.
  • Dr. Robertson came back from vacation and was able to review all the findings.  She says she's more positive about the MRI results than those who had looked at them before.  She says that she believes the growth in the MRI that was stated to us is smaller than others had said.  
  • She also reviewed the MRI results for the spine, and talked about how doing MRIs of the spine is a mixed blessing.  Things are not as clean and clear as they are in the brain, and you can sometime get false positives for things that you previously would never have known about.  She said that she hopes/believes that the cancer cells have not spread to the spinal fluid, but can't rule it out until we do a spinal tap to directly examine the spinal fluid.
  • They don't want to do a spinal tap (it's properly called a lumbar puncture, but I love the movie Spinal Tap, so I call it a spinal tap) until she's scheduled for her next anesthesia, which may be another 5 weeks or so....
  • In our BEST case scenario, we're looking at another 5 weeks of radiation, with chemotherapy (Temodar and Irinotecan, started today) on top.  After that, a small break, and then 6 rounds (1 round per month) of chemotherapy with different combinations of drugs aimed at the rhabdomyosarcoma, and not the previously targeted medulloblastoma.  Best case scenario puts us in treatment all the way until February (at a minimum).


They also told us about the prognosis if the rhabdomyoscarcoma has metastasized (started to spread out of the original area) into the spinal column.  According to Dr. Robertson, and confirmed by her Nurse Practitioner Marcia, if the rhabdomyosarcoma has spread into the spinal column, any further treatment will be done merely to extend life. With that said, any further treatment might possibly seriously affect her quality of life as well, and should be debated.


We move along with that.

Short term:  Amie looks great, continues to charm the pants off everyone, and is a true joy to be around.
Long term:  If the cancer has spread to her spine, then everything is....  different.

One final message, that will hopefully make you smile.  After mentioning me turning on the ads, apparently many of you started clicking on them.  That clicking made us $50 in 2 days.  

So feel free to keep clicking through on the ads.  Even if you are a young 20-something living in Arkansas (right, seƱor?)

More information as we know it...