Sunday, March 17, 2013
Fellow "cancer moms" often refer to this new world I live in as Cancerland. You know, just like Candyland...except it's not fun and it's not a game and it can't be boxed up and put on a shelf for a few years.
(And you really don't want to lose.) Yeah, so it's nothing like Candyland...save for the copious amounts of sugar and junk food they give kids with cancer (because at the conclusion of treatment, every kid wants to go get a root canal or two. Right?).
To me, Cancerland is scary and traumatic, but to Ari, Cancerland is just where he lives. It's all he knows. It's his life. He doesn't comprehend that he's different from other kids and he sure as heck does not realize that he has a serious medical condition. He must think all kids Purel twenty times a day, and have their temperature taken every morning and evening, and have nurses come visit them at home to draw their blood. And I'm pretty sure he thinks he is Caillou.
Sometimes I wish I could explain it all to him. But most of the time, I'm glad he lives in happy oblivion.
But as Ari becomes older and reflects on his daily experiences both in conversation with me and in imaginary play, I realize just how all this cancer stuff has taken over his life. The majority of the time he's playing, he pretends he's taking his animals on trips to the clinic or speeding his excavator truck to go dig dirt at the hospital. He loves to use his toy syringe to give us all our "tubey" and he has mastered the blood pressure cuff. When he gags, he says, "quick, get the bucket" and he even asks for "ativan" when he's not feeling so hot.
I imagine that you who are reading this feel sad for Ari, but I gotta admit, watching him "play cancer" puts me more at ease. Why? Because I am convinced that not much about Cancerland is scary or traumatic for him and I will even go so far as to say that a lot of this cancer stuff is enjoyable. (This is why the Make a Wish Foundation often says the wishes ganted are just as much for the families as they are for the kids. The parents sometimes need the fun more than the patients. Therefore, Ari's going to wish to go to the Seychelles. Wink.)
But if you want to feel bad for us, here's a story that made my heart ache.
One morning, Ari was pretending the remote control was a telephone and he accidentally turned on the TV. Airing was an hour-long St. Jude's fundraising special featuring many kids with cancer. Ari sat fixated on the kids on the screen. And then he started excitedly narrating for me. He pointed out doctors and nurses and medical equipment and all of the things he sees on a regular basis. I let him watch because I realized this was very exciting for him. It was like watching a show all about Ari. But then, towards the end, they showed a bald boy around Ari's age playing with trains. Ari looked at me and said, "Mommy, Ari play trains too?" and I responded, "sure, let's go play trains" and he pointed and said, "Go to hospital and play trains with boy?"...
(Deep breath JulieSue. No tears.)
..."Sure, let's go next week after Clinic."
Satisfied, Ari jumped off the sofa to go play with his trucks.
It took me a few minutes to recover. And then, after a moment of reflection, I smiled. To my 2 1/2 year-old, this is all just fun and games.
I'm thankful for this. And one day I will explain to him that he won in the real version of the game of Life.
Quick medical update & a refresher of our routine:
Every 3 weeks, Ari receives a whole slew of chemo and 7 days of a crazy high dose of steroids (steroids keep leukemia cells from growing). It plays out like this - 1 horrible/neurotic/hungry/insomnia filled steroid week, 1 week to recover from the effects of the steroids, and then 1 really feel good week. And then it repeats. Ari has 3 more courses like this and then the steroid dosage drops significantly, and his "whole slew" of chemo changes as well. The docs claim that this new regimen makes the kids feel much better. And, knock on wood, he will remain on this new protocol for 1 year, and then treatment will conclude.
This Wednesday begins the next cycle. I'm stocking rice and edamame and hot dogs and pasta, but only time will tell what he wants to eat. Do I think he'll want matzah and hard boiled eggs? Doubtful.
Hopefully we have enough ativan
for all of us to get through the week.