Monday, May 13, 2013

Re-balancing {day 8}

Things that are hard for kids:
a. transitions
b. cooped-up-ness
c. low hemoglobin*
d. cancer
e. all of the above about that.
Today I got to the hospital today mid-afternoon.
Sam had just completed his penultimate bath in the care of Grandma.
And he was mad.

Mad at me.
Mad at the world.
Mad at the hospital.
Mad at cancer.
Mad at being hooked up to his IV pole for almost eight days straight.

I haven't seen a Sam meltdown like that in a while. But it was interesting and impressive, at the same time. He was mad. Super angry. But also remarkably controlled. Yes, he yelled and screamed and cried. But he tried so very hard to get himself out of it. He really did. He tested out ideas (art? walking? snack? hug? okay not all the ideas...) and he kept saying "I don't know why I'm so angry but I am. so. upset!" (And I alternated between letting him rant and trying to help him work out of it. I'm sure there is something very comfortable about throwing your best tantrum of the week for your mom...who loves you no matter what, right?)

Then finally...finally...finally....he was free of the pole. First time in so many days, we had three free hours. It turned his mood around almost immediately. It was after 5pm, we headed downstairs and outdoors. Sam breathed in fresh air and then turned right around to go back in. After all, it was cold outside!

We had dinner together in the cafeteria. With his improved mood, he was a lovely dinner companion. He chose 8 slices of tomato and 5 slices of American cheese off the salad bar and had one piece of pizza. Plus 20 ounces of sprite! The cafeteria was nearly empty so Sam tried out moves. I kid you not. And he said "why isn't there a playground with dangerous play structures here at the hospital?" (Why do you think, Sam?)

Then we headed back upstairs with the hopes of finding someone to be the third player in our favorite hospital game, Monkey in the Middle. Instead, Sam found a small group of kids -- two were siblings of other patients and one was another patient, all around 6 years old. They started a rousing game of catch and throw and dodgeball and just....normal....kid fun. One of the nurses remarked how nice it was to see them all playing together. And it just was good.

After a while, the ball game broke up and Sam went on to do about 10 laps on a rolling chair. Yes, some laps were done sitting and some were pushing the chair. Hey, whatever works, right? Plus he made for great entertainment for the nurses and doctors who debated the safety merits of his behavior with each lap.

Finally, Sam settled back in with one of his ballgame playmates for a little Kinect experience. I love when he's able to connect with other kids on the floor. This little guy just got here today and he's here all week for his chemo treatment. They are planning another playdate for tomorrow. Bald kids unite! (And mamas, too. We had a nice chat while the boys were playing.)
Nurse Eric gets the photo credit on this one :-) I promised!
Then came a major milestone. If you'll recall, Sam was on a three-baths-a-day regimen thanks to a drug called thiotepa. Tonight was the LAST BATH. Yes, 18 baths in six days and Sam is now the cleanest kid I know. He told me that he doesn't think he needs a bath again for a very long time. Perhaps 18 days, he said. We'll see about that, Sam.

The doctors are pleased with how he's doing. Things are, so far, going according to plan. We're just at the beginning. It's hard to believe that today is only the 8th day....time moves both so very fast and so very we settle in for our second week of this hospital stay...


  1. Throwing your best tantrum for your mom who you know loves you no matter what -- yes. Oh, yes. I can relate to that one.

    Thinking of y'all. So glad there was some normalcy, some play with other kids, some fun in the day.

  2. Back in my counseling days, I always told my mommies who marveled at how angelic their kids could be with strangers & what hellions they could be at home to take it as a compliment. It's a wonderful thing to see kids so loved & secure in the knowledge that momma won't sell them to the gypsies, no matter how badly they show their asses on occasion!

    Thinking of you all - positive healing juju from Texas!


  3. Love the neon crocs Sam! You look like you are doing some Krav Maga with the X Box.

  4. I think throwing a tantrum is so incredibly normal. An adult in SuperSam's situation would, no doubt, be grouchy & demanding & probably whiny. Sam is so blessed to have a mom that understands & doesn't judge the tantrum. And I'll bet you welcome the normality of the "fit", don't you , Phyllis?

    While they shouldn't become a habit, Sam, I say, you get to have a tantrum on an occasional basis. You're entitled.

    Refuah Sheleimah.....