Tuesday, September 17, 2013


Amie's been using the British version of Ready, Set, Go for a while now, instead saying Ready, Steady, Go!

Not sure where she picked it up, but it's quite cute and really unique.

She's also been watching a bit more TV as of late, having gotten sick twice now in the last month.  The show she's gravitated towards is Daniel Tiger, which we quickly figured out is a cartoon version of the friends from Mr. Rogers.  It's really cool.  Katerina Kitty-Cat, Daniel Tiger, and all the other friends that Mr. Rogers used to rock out back in the day.  He (Daniel) even changes into a sweater and switches his shoes when they start the show.  Check it out, oldsters!

Chemo round 2 starts today.  They were supposed to start it yesterday, but apparently Mondays are really hectic in the clinic.  We are really wondering how things are going to go with this time. (She has a mask on because she has a cold, btw).

When we started a year ago, Amie was a baby...  she was very compliant at all times and had no real idea that anything major was going on.  But we're a year older now, and she's a hella lot more aware of the world and what's going on with her own body.  She sees her sister's hair growing, and sees that she has much shorter hair.  Just that awareness is pretty major.  If she loses it all again, she's going to be seriously devastated.  We'll have to wait and see.

Here's what we know/ the plan thus far:

  • Shel and Amie will be going into the infusion clinic at Mott each day to get her dose of intravenous Chemo.  Assuming that goes well each day, and she's not feverish (she has a basic cold right now), they'll send her home each day.
  • Once that first week is done, we have a week of oral chemotherapy to follow up with the intravenous.  This will start approximately 15 days after the intravenous is done.  
  • They will repeat this process one more time, and then do a follow up MRI.
  • If that MRI shows a decrease in the tumor, then they will schedule a brain surgery to remove the lesions/tumor that are showing up.
  • If that MRI does not show a decrease in the tumor, they will switch to a new chemo protocol to attack it in a new way.

Walked into work today and saw a Co-Worker wearing one of Leia's "Sleep Fights Cancer" shirts today.  I often forget, somehow, that we've got a great team of people offering help, helping in small ways, and overall cheering us on.  I know that it's obvious that we do, based on the responses when we post things on FB and the number of blog hits that we get....but it's also amazing how....separate you sometimes feel in all of these times.  This cancer, this sickness is so damned overwhelming, it just swallows all the rest of the conversations that exist around it.

I find myself being in small groups of people at work and forcibly telling myself NOT TO TALK ABOUT CANCER...because who the hell really wants to hear about it, and who the hell really wants to talk about it?  To quote a co-worker at McBride "It fucking sucks, and that's just about all you can really say about it".  (Sorry for the swearing, but I believe the word is appropriate to the conversation).

Yes it does kind sir, yes it does.

...and ya know what else really sucks?  Each night at dinner, we try to do what we call "Grateful", in that we all talk about what we are grateful for, anything.  Amie ALWAYS talks about whatever food she's recently eaten that makes her heart happy.  Shel and I mention something that filled our buckets.

Anya?  She always says that she's happy that Amie's not sick anymore, and that we haven't had to go to the hospital recently.  How crappy is it that her wishes/gratefuls are about her sister, and not her own life, and that the one thing that she really wants is no longer happening.

So, I've depressed myself writing all of this, but hey, maybe some of you are still reading.  :)  Things are fine, things are great.  I've got an AMAZING group of students this year, and the curiosity/affective feedback, and overall awesomeness of my students crashes like waves on me each day.  Lots of good stuff is coming from the medical side of things, lots of good stuff going on at school.  Shel and I are totally hanging on, and Anya loves the crap out of her school and the experience she has there each day.  Tons to celebrate.

It's just amazing at the power of this illness to suck the color out of things.

Monday, September 9, 2013

Round and Round we go, the 2nd time is always better than the 1st...right?

Just got off the phone with Dr. Robertson, our Pediatric Oncologist.

They had a 2nd look, with a new team of radiologists, and have now concluded that it is in fact a recurrence of the same cancer, but with massively slow growth.

They believe that it's actually growing off/near the original resection (surgery) site, in the 1-2% of the tumor that was left behind.  They couldn't remove the entire tumor because it was wrapped around a vein, and near the brain stem...and believed that the possible complications of the further resection far outweighed any possible benefits of it.

So, they're going to re-start Chemotherapy on Monday the 16th. The original surgery was on the 14th last year.

The regimen that they're going to use is quite new, and they're hoping to see some good results.  They'll do the oral outpatient + infusion clinic therapy for two months, and then do another scan to see if it is showing any results.  

She said that she has consulted with Dr. Maher, the original surgeon, and he said that the lesions, as they are calling them,  could be removed with surgery.  However, if we removed them right now, we wouldn't know if the chemotherapy was having any effects.

But Dr. Robertson was quite optimistic on several fronts.  The tumor has not spread anywhere, it is recurring near the original site, it is SUPER slow growing, and isn't that big yet.

Not sure if we're numb to the idea, if we are already prepared for the idea, or if this is just one long marathon that we're conditioned for...but we're taking this well.  Maybe we've just been walking on broken glass for so damned long that we're used to the cuts/have tougher feet.  Who knows.  I'll tell you in a few months.

 On a lighter note, here's some pictures from round our world as of late, for the Non-FB types:

Amie is quite the hipster with the Faux-Hawk.  :)

Anya made my parents cards for Grandparents Day.  This was a rough draft of my Dad before she finished his mustache.

This is my Mom and Anya.  :)

This is Anya's getting ready chart in the morning with Mom.  Her illustrations are always amazing to me.  Far better than I could do at 40.

If Anya does really well in the mornings, she wins "Icey Bucks" that she can spend on things.  She chose a movie night, in which our bedroom became Theatre 12.