Saturday, August 31, 2013

Ouch - Day +3 and +4


We've just been so lucky up until now. Sam has largely sailed through his treatments, with such minimal painful side effects that I honestly and truly did not want to believe Dr. M when he described the terrible mucositis that Sam would experience.

And he never ever says "I told you so" to me -- but he does feel that Sam is doing exactly what he should be doing. Even though it totally and completely sucks.

Sam has quite a bit of pain in his throat and his tongue is all sore and red, with large ridges that look like he bit his tongue over and over again. It hurts to talk, which is hard for him but a great excuse not to talk to the doctors! He still has the PCA (that's the morphine he can control) and special mouthwashes, and he took a lot of naps over the last two days.

Naps make the time go by faster, I think. For him, at least.
Usually he's napping while waiting for David to show up.

In addition to napping, there's been a lot of iPad-game-playing. I know that it totally helps to distract from the discomfort and the pain so I'm not doing nearly as much limiting as I usually do. He went through four whole levels of Cut The Rope today! It's good brainwork and it's good to see him focus on a challenge...even if it is screen time!
He has a set of exercises that the Physical Therapist left for him, and he's actually been great about getting up and doing them. He's mostly confined to the room, but after "dark" -- meaning, after 8pm, when the lights are turned down in the hallways and all the visitors have left -- he is allowed to make a few laps around the floor. On Friday night, he didn't feel up to taking a walk. But tonight, I cajoled him out of bed to stretch his legs with the promise of "just one lap!" and when we finally got out the door of the room, he looked at me and said "let's do six." I was so proud of him! I could tell that six laps tuckered him out....but he did step at a day at a time....moving forward.
And so it goes...

September is Childhood Cancer Awareness Month.
If you're reading this blog, I know that you are aware!
I also know how silly it is to have ONE month of awareness. 
We are aware ALL the time.
But nevertheless, September is the month --  we are just one story in a terrible sea of stories about childhood cancer. Over here on my regular blog there are some links to posts that you might find interesting...


  1. Thinking of you, Superman Sam! Sending good thoughts to you and your family!
    Jessica, Doug, Carly, Nate and Maisy Millen

  2. refuah shleimah
    may it be a wonderful year

  3. Six laps! Sam is awesome. I hope the pain passes fast!

  4. Love, hugs, and prayers--and I'm looking for a good joke to send for Sam.

  5. Sending you love and good thoughts today Superman Sam. How about those laps.


  6. Always thinking about you, Sam.