Thursday, June 21, 2012

Negotiation...Chemo Day 8

Sam is a MASTER negotiator. Yes, that was in all caps. Yes, I am shouting just a little.
Seriously, Sam and I had some major negotiations today.

Remember how I showed you our checklists?
Sam has become a rockstar about the mouthwash and the eating/drinking.

It's the walking.
Ugh, he is so determined to spend all day in bed.
Part of this is his furious anger at the whole thing.
I totally get it.
I would like to spend all day in bed too.
Wait, I would not.
I need a little fresh air.
I think Sam has realized how badly I want to go outside and he is determined to keep me indoors!
But this is not about me, right?!

Anyway, we got a few walks in.
And a visit with the music therapist (who knew!?):
Also, isn't that a cool gizmo for guitar teaching? Sam wishes they had a full keyboard, they only have little ones. He did pluck out his piano recital piece though.
(He was so entranced with her that he actually stopped playing xbox with another child to spend time doing music!)

He also got some mail....
This was the second delivery of the day. The first one had 18 letters with superhero pictures...
Sam had quite a few visitors today, which helps to give him something to distract him from ME trying to cajole him into taking walks!

Do you recall how Sam had a big complaint with his IV pole? Things have lightened up a little now that we have time away from it (we're only hooked up for chemo and a few meds, a little bit of fluids now and then) but while we were frustrated with it, my dad remembered that Stephen Colbert wrote a whole book about a Pole. Yes, a Pole. (Not a person from Poland, mind you, but an actual Pole.)
Zeyde ordered the book and brought it in today to read to Sam. Sam's review of the book: "It was silly and didn't make sense." Yep, that about sums it up. But it's Stephen Colbert! So we giggled all the way through it. (In case you care, here is my one-line review: "A sweet coming-of-age story!")

Here's your smiling Sam for the day:
We are in Wisconsin, after all.
Two more days of chemo treatments, followed by a bunch of waiting.
I think I may have a plan for tomorrow that will eliminate some of the frustration - will report back tomorrow on that one.

In mama-land, I started watching Downton Abbey on Netflix. Aside from the glitchy wi-fi, I can actually see why people are so hooked on the show. I need a fun bring on the costumes and the British accents!


  1. Phyllis, I'm sending all of you a lot of love, and soon, a photo. Lemme see how many superheroes I can round up at HSJacobs Camp. One or two, I bet. So sad to read of your Grandma Rose's passing. On top of everything else, indeed. And scratch that message I left you about St. Jude's. I'm so glad you are in such a good place. (I mean, considering the circumstances.) You continue to amaze. Blessings.

  2. Rabbi Sommer,

    The first thing I do in the morning lately is to go on Face book or Sammy's blog to find out how Sammy is doing. And I'm happy he's ok. He has a lot of friends, u and your husband, u have a lot of friends; all these friends together will fight the sickness and will win!
    Sammy is doing well in the hospital and I'm proud of him! I can't wait the moment when he'll be out of here, going to Am Shalom and everybody would be happy to see him! Believe me that moment will come!
    I'm sorry for your big loss; there are not enough words to say. The only thing I'd like to say that your grandma helped in some way to Sammy. She took all the bad energy and the sickness from him and took it far away....
    Years ago we had two beautiful dogs -German dog and boxer. They died and we were crying, because they were like part of our family. Someone told me that sometimes dogs die to save people from something bad; I don't know if this is right or wrong; but I was thinking and I could say it makes sense.
    Tonight, at Shabbat all of us, we'll pray for Sammy and your family! We'll pray for Sammy's health and for your happiness!
    Sammy, be superhero!
    I'll send more and more of my positive energy to help you, for your healing!
    Shabbat Shalom!

  3. I'm glad you got the Pole book! Eli read it and didn't understand it, but loved that all of the adults around him laughed. Maybe you can tell Sam that his pole just wants a job? I'm fairly certain Sam has gotten some of his negotiation skills from you, so just remember that. :) Have you tried a scavenger hunt for things in and around the hospital? An "Eye Spy" list so he'd be engaged on a walk?

    Keep fighting on. Take care, Sara

  4. I love that he got two mail deliveries in one day, and that the second one required a wheel chair! What a rock star! Those walks can be a chore. What six-year-old likes to do chores? Do you use motivations/rewards for doing chores at home?

    I second the scavenger hunt idea. What if you 'hid' his next packages around the floor and he had to follow clues to find them? Or, if that's too much work for you (you're already doing so much!) maybe he could take a walk down to the other end of the hall to retrieve his mail chair and push it back to the room? Like the mouth care, the walks are so important as preventative care. The more walking he can do now, the more he will be able to run and play when this is over. Hang in there, his energy should start to bounce back in a few days as his counts come back up.

  5. Have you heard of the Gerson Therapy? Please go to or look at their books on Amazon. Wishing the best for your son.

  6. I am rooting for all of you! And thinking about you and keeping you in my thoughts and prayers! xoxo
    and Shabbat Shalom!

  7. Phyllis,

    We have been with you since I read of Sammy's diagnosis in Israel. We have a special present from the Holy Land that we will be sending very soon.

    Thanks for blogging about everything.. it helps us feel closer to you and everything you are going through. We love you all dearly and think and pray for you constantly.

    With much love from Texas,
    Adrienne, David, Beryt and Ezra Scott

  8. So sorry for all you are going through. You are such a strong mom and what a brave boy you have. Wishing you nothing but the best.

  9. Happy to see the envelope we sent in the second photo. Get well soon, kid.