Saturday, June 23, 2012

Day 9 - are we there yet? (Friday's post*)

*I don't post on Shabbat, so you'll probably get multiple posts on Saturday night as I catch up from Friday and Saturday.

I know that Day 9 of chemo and Day 12 (?) of hospital stay are faaarrr from even seeing "there."

But today was one of those days when Sam asked to go home about a million times.

Not because there was anything particularly difficult today.
He slept in.
There weren't too many visitors. (Which can be both exhausting but exhilarating, so I suppose this was a part of it perhaps.)
Side effects were relatively minimal and there was a LOT of time "off the pole," unhooked from the IV.

I think he is just starting to feel the reality of how long this is going to be.
And so he started to wallow a little.
He pointed out that even when his sibs come to visit, they don't get to stay very long.
He pointed out that my one hour trip to shower at the Ronald McDonald House was an inconvenience to him. (Even long after I had returned.)
He pointed out that my insistence on exercise and water and food were horrifically unreasonable.
He pointed out how "little" time he gets just sitting in bed playing his games or watching TV. (due to my unreasonable demands on him.)
He pointed out that the letters and packages are fun and make him happy but that all he really wants is his family. (cute, huh?)

It's remarkable how much this is making all of my children appreciate each other more. I would prefer they learned that appreciation in another way....but oh well.

He spent a ton of time on FaceTime this afternoon/evening, with the family. 
Shabbat was quiet and unremarkable.

When he wants to go home my heart just breaks. But I know we are so blessed to be here, so lucky to have good doctors who got us here, who figured out what was wrong, who know how to treat it and don't panic and tell me that weird things are actually "normal" in this bizarre world of leukemia treatment. And so I plug away at it...wishing to snuggle my kid who hates to be kissed and relishing the FaceTime moments because he lets me lay down next to him on the bed and I can pretend we are snuggling and he doesn't notice. And sometimes I sneak in a kiss and let me tell you, those of you who know Sam best can tell you, what a feat this is. And I know, deep down, this is going to be ok. His frustrating stubbornness is going to see us all through. There's no rolling over from my Sam...he will argue the damn leukemia out of his body.

Anyway, medically he is doing great.
All his counts are going in the right direction (down) and he is probably due for a blood transfusion tomorrow. While that sounds all Twilight-ish to me, I'm sure it will be just as lowkey as the chemo is. Consent forms are all signed...just waiting for a handsome Dr. Cullen to walk in with some red stuff. (Probably not. Oh well, a gal can dream, right? The pharmacist is awfully handsome. I'm a married spud...)

I think I just need a little break. Hooray! Uncle Josh arrives tomorrow for a turn with Mr. Picky Pants my beloved child. And of course, someone will write some blog posts along the way, I'm sure. Whew.

From today:
I love this shot...
Beating me at air hockey. Too bad the thing doesn't actually keep score.
And an update on our wall:
Wow. We have actually moved over into the entryway and covered up a poster...THANK YOU to everyone.
One more day of chemo. Then we wait.
Shabbat Shalom!


  1. "...relishing the FaceTime moments because he lets me lay down next to him on the bed and I can pretend we are snuggling and he doesn't notice." This made me smile, as did the picture of Superman Sam in his cape and seeing my babies cheering Sam on from his wall. continuing to think of you all and cheer for the chemo to do it's work! Hang in there, Sam. You're doing great!

  2. If marathons were easy, everyone would run them. Your family never chose this race -- it chose you -- but I know you'll all cross the finish line with raised arms and big grins. The middle part is frustrating, with aches, pains, and fatigue, so you each can pick a day every now and then to kvetsch. Just keep putting one foot in front of the other and one day, you'll find yourselves in the home stretch, with all of us cheering your victory.

  3. Shabbat Shalom, Phyllis. I so admire the way you are handling everything and even keeping your sense of humor. You are one special lady. Sam is so lucky to have such a Mom. Much love to you.

  4. I check every few hours for your latest news. Thank you for keeping up all posted. I love the cape picture. I have one of Sam with his cape and my dad also sporting one. Oh the things grandparents do for their grandkids. Gotta look for that pic. Anyway, we love you all and I think of you at least once an hour!

  5. Need to send my pic before you run out of wall space!! Love the pic of him in the cape!!

  6. The pics are great...your sense of humor is inspiring...and we are thinking of you!!


  7. Lovely pictures. Why the anti-popsicles sign? :-)

  8. Hang in there. Blessings to everyone taking care of Sam (including Mom, Dad, sibs, extended family). They know what they are doing! Miss you all.

  9. I love the superman cape. and I love that you write to keep me and everyone else up to date on all that is going on. And I wonder what Sam will be when he grows up-- maybe a superman movie star. You are certainly giving him superman values. Maybe he will save a whole city. Maybe we will never have crime anymore-- and we will all say "He learned how to change the world when he was only six years old.
    Love you,
    sharon morton