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?