How was your day?

I know it's a simple question. I hear it all the time, or variations of it: How was your day? What are you up to? Have fun plans tonight? Enjoying the weather? Simple, innocent questions asked by nice people: the checker at the grocery store, the nice lady making my morning latte, a waiter at a restaurant. I will always reply, with a simple sigh, fine, not much, sure... the weather's fine.

But what I want to wear is a big sign that says, "MY BABY HAS CANCER" Or maybe hand out a card that says, "I am not OK, and my day was not that good. I was at the hospital this morning, like I am every morning. My son was crying because he doesn't feel good and doesn't know why. But I know why... he has leukemia. No, not the leukemia like your second grade teacher's four year old son, who's 17 now had... infant leukemia, much worse. We will be in the hospital for the next YEAR... that's right 53 weeks. So, I hope you have a good day... I really do... but please don't ask me. It's too hard to lie and smile and say, I'm good".

But, maybe that's a little too dramatic. I've never really been a dramatic type. In all honesty, most days I wouldn't need to hand out that card, but some days...

This is a marathon of a journey, a trek up a very steep mountain... and each day is a step, a step forwards, backwards or sideways... but a step. We all just have to keep trudging...

Happy... really

Today we played and played in the children's garden. We ran, chased, flew and rested. Here Owen is smiling at the camera. Suzi joked that when he's older, he's going to think he was never happy... but I swear, when you say "smile" this is it!

But, if you happen to capture a spontaneous turn, there's his handsome smile.

Suzi flew him around as a jumbo jet. He loved it!

But, pose for a smile with Suzi.

Back in the room, a quick smile.

Suzi stayed at the hospital last night to give me and Lucas a night at home together. It had been 23 days. That's a long time. It was so nice.

Steroid Baby

It's official. Henry does steroids. I think this may rule him out for any future Olympic activities. His face has the typical steroid "moon face". While some of those cheeks are pudding, most of it is from the steroids. But, the next round of chemo doesn't involve steroids, so better to bulk him up now.

Each day is getting worse for him. He's more tired, more cranky, more pathetic. He has no white blood cells, which can make him feel horrible and achy, but we can't give too much Tylenol, for worry that we will hide a fever, a sign of infection. Today, we tried Ativan. Then he played and played, at least for a little while.

The hospital is so great with Owen. They have art and play activities almost every day. While this is mostly geared toward patients, they open arm welcome Owen to them. He got to paint a birdhouse last Thursday.

Trial bath #2.

He didn't like that one either.

Suzi and Henry... Henry got pink face from Suzi's sweater. A perfect combination of sticky pudding face and fuzzy pink sweater.

I love his eyes.

Garden Time

After our morning with Owen, mom took Owen home and Lucas and I had some quality time with Henry at the hospital. It started with a nap. Lucas and I played UNO. Then we got unhooked from the IV and took a quick opportunity to visit the children's garden while the sun was shinning. When we leave the room, Henry has to wear a mask to protect against germs, but once outside, where there are less people, we can see his face. The turtle hat was made by my friend Christy.

OMSI morning

This morning, mom came up and sat with Henry, so we could take Owen to OMSI. Some quality, away from the hospital time. Lucas picked me up at he hospital, Owen was happy I got in the car, but quickly asked "where's brother?" I tell ya, it breaks my heart!



But, OMSI is always a big hit...play in sand and water, and even pretend to can be an astronaut.

Self-portrait (we really do feel and look that tired!)

Owen loves playing in the water. In theory, learning about sailboats, but really just loving to splash in the water.

Brothers at Play

I love the mornings when all four of us can play together. Owen is getting more and more comfortable with the hospital, and he's almost willing to play with his brother.

We are playing around a musical table. I just love the Henry butt shots... reminds me of him as an old man.

I think both boys were getting tired of Lucas trying to capture their pictures.

Bath Time

Yesterday morning, when Owen and I made it to the hospital, Henry was napping. So, we started out playing in the playroom. It's a huge room full of toys and more toys for patients and patient's brothers. Owen loves it... and really loves Diane, our child life person. Every day, "where's Diane". She is so wonderfully helpful with both kids. What a great job!
After Henry woke up we saw this: a kid desperate for a bath.

We needed to give Henry a bath... a real bath. So, after over two weeks, they found a bathtub just the right size for Henry. I love how he's looking at me, and I love how he has a death grip on his rattle.

Owen loved helping. Splashing, washing Henry and dumping water on his head.

After about two minutes, Henry decided he hated the bath. It was flashbacks to his first few baths after he came home.

But so handsome and clean!

Henry is also making progress on using a sippy cup...

Such concentration, but he's getting better.

I love him.