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!