Tuesday, August 7, 2012

Loooong Monday

Yesterday was a long and boring day.  I will try not to bore you with too many details, but since we spent the majority of the day at the hospital after oxygen for a regular check-up and infusion, I think it's time to share some medical updates.

First, Ty is almost done with oxygen therapy.  Thursday is our last day.  He was SO upset in the chamber yesterday, he cried for me almost the entire time (he is in for two hours every morning).  It makes me sad that it never got any easier for him.  In fact, he seems to be fighting me more and more as treatment is coming to an end - which I take as a good sign because he must be feeling better if he can put up such a fight!  You should have heard him screaming as they were closing the door this morning.  Yelling, "Take me back outside!!" over and over again.  This is not the boy who barely had the strength to whisper when we began.  I have the team here at Phelps Memorial Hospital to thank for that.  For not being afraid to take on a very unstable four-year-old and help to make him better. 

Second, Ty's bloodwork is still perfect on this daily chemo regimen.  He also showed some pretty decent strength in his arms and legs when he tried to fight us at the time of accessing and deaccessing his port.  He was angry and it showed!  As much as I hate the needles, I was happy to see him so trying so hard to move.  He is definitely our little fighter.  Saturday will mark two years since his diagnosis.  I can't get over how much he's grown and how much our lives have changed. 

What else?  His surgical site is healing well from the latest shunt revision.  It looks very red and irritated, but no signs of infection and all of the stitches are gone.  The shunt seems to be working just fine.  The team believes his intermittent headpain is largely due to muscle pain in his neck more than intracranial pressure - although occassional pressure waves are not ruled out and likely par for the course when it comes to Ty.  All-in-all, it was a good day because Ty is doing well. 

The actual hospital experience was grueling (we were there 5 hours for 1/2 hour infusion), but some days are just like that.  The ninth floor, sadly, is very busy at times.  It shouldn't be, but it is bustling.  All those little baldies and their families.  Sometimes I catch the eyes of a new cancer mom and I think, "that was me two years ago, staring at the wall wondering how this happened to me, to my baby.  She will be okay, I hope."  When I was the new one on the floor, I kinda hated the veteran moms.  Not because they deserved my angst - just the opposite - but because I didn't want to be one of them.  I was resentful at the way they navigated the toy room, knowing where everything is.  How they knew lunch is delivered in the side room on Wednesday's and you have to be first in line if you want a tuna sandwich.  How they wore their bracelets and their hope t-shirts.  I wanted to run away from it all.  Now I embrace it because I was forced to, and can barely remember life before cancer.  I can never try to hide from such a painful reality again.  Instead, I will keep doing what I can to change it by sharing Ty's story. 

Yesterday I had a casual conversation with a dad about the various types of positioners he purchased so his disabled son can sit upright at home.  Last week I spotted a dad that we shared a room with a year ago and I knew immediately that it wasn't good news.  Relapse.  I'm so sorry.  Can I get you a tuna sandwich?  The ninth floor looks like rainbows and butterflies - but it is pure hell on earth.  And it is our home away from home.  I am just so grateful for the amazing nurses and doctors who have the courage to walk those halls alongside us.  They are the greatest caregivers in the world and they are helping families like mine fight against terrible odds, guns blaring, laughing like lunatics as we shoot at the sky. 
Riding the elevator to the 9th floor

Love to you all.  XOXOXO.


  1. Fight Ty Fight!!! His spirit is amazing and his strength is an inspiration. Hang in there. If there is anything we can do to help get Ty the positioners he needs - please let us know. I'd be happy to help fund raise for it.

  2. Keep fighting Super Ty! I hope you will recover soon! It is not fair that you or anyone as to go through this.

  3. Cindy
    Your insights and your writing is as raw as it is majestic . Your are so human, honest and real. We love you and wish all the very best of everything for you and Super Ty..XOXOXO