Sunday, April 7, 2013

My best friends...Mac & Cheese {Day 6}

It was a rough night. Sam fell asleep at 7:30 pm for what I thought was the night, and then woke up bright-eyed and bushy-tailed at 9:30 pm. He was very frustrated at 11 when he still wasn't tired. I was frustrated with the whining. "Sam, accept that you aren't tired and let's move on from there to plan all the mayhem and madness we might experience!"

We read Z is for Moose (MY NEW FAVORITE BOOK EVER!) and watched a little screen. Finally at around midnight Sam was ready to try once more and a small bribe didn't hurt to give him incentive to close his eyes and relax. He grumped here and there throughout the night, but I just rolled over since none of his grumping needed immediate attention. I was amazed when, at 8:30am, he piped up in his sweet voice "Hello, is anyone else awake in here?" Usually I would pray to sleep late, but for Sam it meant that his body was recovering if he was awake so late and up so early without being exhausted. He didn't even need a nap all day (no, I did).

His best friends in the world in the hospital, his mama's Mac & Cheese, sustained Sam all day. From breakfast, to snack, to lunch, back to snack and finally to dinner, Sam asked if his two best friends would dine with him all day. Sam ate like a real trouper and kept it all down. Real good signs even though he claimed to be too nauseous to walk around the unit.

Grandma came mid-day and Bubbe and Zayde arrived a little while after. Sam worked with Grandma drawing a book together. Sam has become an incredible freehand artist. He was very disappointed when some of his pages ripped when he tried to remove them from his book. This turned into thirty minutes of tantrum hell as a hunger crash accompanied this set back. With food and some incentive, I was able to coax Sam literally back to the drawing board. He preceded to render Eric Winter's vision of a snail just by looking at a copy of Alef is for Alien.

Sam never ceases to amaze me. The Gargantuan continues to frustrate him as he tries to draw the alien from Gimel is for Gadol. 

I was told I was remiss for not including the "Hair today goon tomorrow" photos except for my favorite mohawk shot yesterday. I claimed artistic license, but was called out on the fact that I just plain forgot to include them. 
Here of course is my favorite image of Sam and how I think his hair should look all the time, even when he accepts his diploma from Harvard Law School someday (a father must dream!). 

The shearing continued of my young sheep as his glorious hair fell to the floor. Sam didn't believe me, but in five months no scissors touched his hair and it grew to the longest it's ever been in his life. It came in wavy and curly and allowed him to play with it and style it when it was wet.

A picture from the curly-hair-days not too long ago...
He took such joy in being able to play with it and make it do his bidding.

And yet his soul shines whether bedecked with hair King David would have been jealous of or shorn like a fresh recruit for the Navy Seals (he truly believes he will grow up to be a Ninja if he watches enough of Disney XD's Kickin' It on Netflix ...Netflix has truly saved us on this endeavor. Sammy turns down almost every movie I bring back from the HOT Unit's secret closet. I swear he wants me to bring him Disney/Pixar movies that haven't been made yet as if I have some super powers to do such a thing.) 

Sammy's Howie Mandel sense of humor is always en fuego when he's up for it. He is a comedian, an actor, a singer and a dancer on his best days. And of course Uncle Josh could not go unscathed. Payment must be made for Sam's locks to fall from his head uncontested. The price, all of Josh's facial hair in exchange for Sam's peaceful acquiescence (better than arm hair like last time). 
A small price to pay when victory is so close at hand:

Sam's imagination and grasp of the world astounds me and leaves me speechless. He brightens our world almost every day (except when he's throwing a raging tantrum about not being able to sleep or due to accidentally ripped pieces of art work). He serenades me right now with his victory song as he crushes the legions of soldiers in Stick War 3. I wish you could all hear his victory song. Until I really thought about it just now, he's been singing for about fifteen minutes straight while playing. He's also reading all instructions out loud to himself. 

And thus day 6 draws to a close. I am hoping Sam sleeps better tonight than he did last night. No itching or rash today. One less nausea med than yesterday. One day further along in the latest chemo regimen, and one day closer to the all powerful Bone Marrow Transplant. Dr. M and I had a wonderful conversation today. I assured him that I only sleep well at night because I know that he is part of our family's team. During this travel through hell, Sam, my family and I are always surrounded by what we believe to be the greatest angels ever trained in medicine. And so we rest for one more night in Base Camp Milwaukee blanketed in all your love and prayers.


  1. Sam's beautiful neshama shines through these posts so clearly.

    In a funny way I'm glad to hear that there are occasional tantrums. Signs that he's a normal kid who struggles with ordinary things (torn drawings), not just these extraordinary ones.

    Thinking of y'all.

  2. My son Evan says to tell you, when you're going through hell keep on moving cause you might get through before the devil even knows you're there.

    (You probably know Evan is autistic, loves kids and is cheering for his friend Sam)

    Me too :-)