Day 3: Radiation + Chemo + A New Appreciation For Home

Three days of radiation down, eight left on the docket. It feels like we are in full swing with this little bridge called Radiation. That feels good.

Pablo and I arrived at the Radiation Oncology clinic at 8:15 a.m. As we walked in the door, the nurses rushed us into the prep room, flushed his port, popped his electrodes on, and wheeled Pablo down the hall to the radiation room. It was cool that we didn't have to wait.

While all the prep stuff was going down, Arlene, one of the CHLA Child Life Specialists who joins us every morning, turned up a giant poster board calendar. There's a whole team of Child Life Specialists who roam the hospital, interacting with children in a playful/therapeutic way, and helping parents understand how to deal with what their child is going through. Like the docs and nurses at CHLA, the CLS staff know their stuff. They make a huge difference. They are the mortar to the doctors' and nurses' bricks in the 'you're not in it alone' wall.

I have to say, this thing lit him up today. He was tired, and although he wasn't in full-blown cranky mode, he was not a happy camper. When Arlene rolled in and introduced him to the sticker game, and he saw his name, and all those Batman stickers, his eyes widened and his beautiful smile filled his grill.

In the mornings, our trick is to let him sleep as late as possible. Usually we wake him 15 minutes prior to our CHLA appointment. I have his clothes at the ready when I wake him, my bag in the car, his shoes ready at the front door, so we can run and gun. Since he can't eat after midnight the night before any radiation treatment, we don't want to have him awake, watching us eat breakfast. It's torturous for him, and a real bummer for us to be screamed at by a little boy who doesn't understand why he can't eat.

So, Arlene, our CLS radiation angel, came in with this giant calendar, which she made by hand, with Batman stickers all over the borders, and Pablo's name written at the top. The calendar grid covers each of the 11 days of his radiation treatment. Every day, he gets to put a sticker on the calendar. And at the end of the week, he gets a prize. On the one hand, Pablo is receiving the benefit of billions of dollars worth of technology, medical training, medicines and procedures. On the other hand, this age old game of sticker/reward is helping just as much as all the hi-tech stuff. I love the poetry of it all. And I can't wait til he's old enough to appreciate the story.

Jo Ann came to the hospital after dropping Grady at school. We hung in the lobby until P was ready for us. Our radiation nurse, Sally—a lovely, empathetic, supportive woman—gave Pablo his chemo while he was still asleep, and before we came in to see him. Pretty cool. When P woke up, he was READY to go home. He makes no bones about it—it's quite funny, actually. He never said things sternly before cancer. Now, he just busts out, 'I. Want. To. Go. Hooooooome!'

The rest of our day was very nice. Aside from minor tummy pains, which came and went all day, Pablo had a great, chill day at home. Polly was here, and they got into their normal at-home groove of games, books and talking. Jo Ann had a million things to do in and our of the house, and dug into all that. I worked from my laptop and Blackberry, and eventually went out for a couple meetings. Grady came home, started his homework, and sat down to dinner with me and Jo Ann (P was sleeping).

The workers are almost—almost—done with the play room. Although most of the workers are buddies of ours, after working on various projects in our house over the past few years, we are eager to have our house back. That said, the play room is looking incredible, and we are grateful that we're able to do such work on our home.

What I'm saying here is that our lives are getting back to normal. It's forever a new 'normal,' and the constant newness surrounding the word has become normal itself.

We are not thinking we will have to be in the hospital for a prolonged period of time for the rest of Pablo's treatment. The 28 day extended stay we just got through is a significant chapter in the story of our family. It cut a deep, wide impression into our family's psyche, and toughened our moral fabric. I feel closer to Jo Ann than I ever have. Although I still find plenty of ways to be a brat to her, there is a renewed efficiency and respect in our teamwork.

Now that we are home, and nearly two weeks past that marathon in-patient stay, I can say I appreciate the experience. And that I hope we never have to repeat it.