Wednesday, February 25, 2009

Excellent News!!!!

Thanks to so many of you who have prayed for Von recently. We got some great news today!

The results of the MRI Tuesday showed that there is no sign of Avascular Necrosis. AVN is the condition where the steroids they use to kill the cancer in the bones actually kill the bones themselves. You don't think of bones as being living but image being an adult with a 4 year-old femur that died and never grew. It is a condition that has no cure yet, so you can imagine when this came up as a possibility, were were very disheartened.

But thank you for praying for him. He is well enough to blaze ahead with his treatments.

This is incredibly good news and I can't tell you how happy we are to get it. Thank you God!

My wife captured a couple highlights of the MRI day. They had planed on a 4 hour procedure, but it ended up only taking one and a half hours.

They put Von in a diaper for the MRI. He thought that was pretty funny. And when they place him in the MRI tube he closed his eyes really tight. At first Lisa thought he was scared and closing his eyes to forget about what was happening, but then it dawned on her that he was trying really hard to go to sleep. He thought he had to put himself to sleep. Thankfully the drugs take care of that in about 8 seconds. This picture is after the procedure. there is something very peaceful and eerie about seeing a person unconscious.

Tomorrow Von starts back up with Chemo. It is his birthday tomorrow, but we're not telling him. We're going to celebrate this weekend as tomorrow will likely be tough for us all and he will be too sick to enjoy Darth Vader cake.

AVN free body. What a beautiful birthday gift!

Tuesday, February 24, 2009

No Cash Value

This little ticket caused quite a stir Sunday.

We went to little Ellie's funeral and prepped the kids beforehand and told them we would be viewing Ellie's body in a casket. We told them that it isn't polite to touch and that you're just supposed to stand there and say goodbye quietly in your mind, and above all else, please don't say anything or ask any questions out loud.

The line was long and during the wait Von kept playing with this ticket. I told him to put it away but he protested that he wanted to give it to Ellie. I explained he couldn't give it to her and told him to hide it in his pocket for later.

So finally we get to the front of the line, we hug Ellie's parents and hurt with them a little, and then walk over to the casket. My girls did beautifully. It was a special moment.

But Von kept squirming in my arms, and kept trying to lean over to put this ticket in the casket. The following was heard by pretty much everyone in the funeral hall.

Me: Put the ticket away, son.

Von: But dad? I want to give it to her.

Me: She doesn't need it.

Von: But dad, it's for when she wakes up!

That was the point where I could sense a few stares in the room through the back of my head and I quickly exited while whispering an apology to Ellie's parents. I can't imagine the loss they are feeling right now.

But what I liked about the whole deal was that while Von couldn't comprehend the significance of the occasion or the irony in an interaction between one future cancer survivor and one who didn't, he knew something was different and special about the event. He kept saying, "I feel sad", but he didn't exactly know why. He thought up the idea of expressing compassion through the giving of a gift. He insisted on expressing his care even when I told him it was useless.

Compassion. Care. Empathy. I'm not sure what the experts call it, but I think it is love in action. I think God gave humans this built-in capacity for it.

The ticket now has a home in my wallet in the little window over my driver's license. And every time I see it, I'm going to remember Ellie and look around for someone that needs some love in action.

No cash value never felt so good!

Monday, February 23, 2009

Monkey Boots

You know you have good friends when you have a bad day, gripe and complain a little, and they still come around and want to hang out with you.

You, my blog reading friend, are one of those pals! Thank you!

I'd like to ask you to pray for Von tomorrow. Some of the drugs he takes to kill the cancer also attack muscles, bones and structural components in his extremities. Recently he has not been walking as much and tires easily. (I get this way when it comes time to mow the lawn and will have to remember the medical terminology to try and use on my wife as an excuse.)

Von got braces recently and loves wearing them. I've been so impressed with our family and visitors who come over and make a big to-do over the fact that he gets to wear these and how cool they are. At his age, he looks to us for how he should respond to stuff and it's an easy sell if you call them Star Wars boots or his monkey boots. (He puts a half-peeled banana in between the bottom of his feet and the braces and eats it like curious George eats a banana with his feet.)

You and I would want to get out our long pants to cover them. Von? He asked Lisa on the way home from the hospital to stop at Target and buy him some shorts so he could show them off.

Von's treatments will last three more years, but the more intense treatments come in the first six months. We're entering month five and six and then it is on to the maintenance stage.

Because of the intensity of this last stage before maintenance, he has to be healthy and ready to take the last barrage of steroids and chemo. They call it 'delayed intensification' with is a really convenient phrase for 'the poopiest part of the whole deal'.

Today Von was flagged at his checkup for some abnormalities in his bone structures and they suspect the steroids have done damage and are hesitant to proceed. He goes in for a 4 hour MRI tomorrow to see what is up.

I'd like to ask you to pray for his protection while he is put under anesthesia for that long. I'd like for there to be nothing wrong with him and I'd like for us to be able to proceed to the last stage of the first 6 months.

Thanks for your love and support! If you're in the area, stop on by. We'll invent some new names for Von's boots together and eat a banana in any fashion that suites your fancy!

Sunday, February 22, 2009

A Good Cry Over Pizza

I cried at Chuck E. Cheeses yesterday.

When you hear that, you probably envision a grown man blinking away a few tears before anyone can catch him clouding up.

It wasn't that. It was the other kind where your shoulders shake and you have to borrow your kids pizza stained napkins to wipe the tears. The kind where you don't look up, because if you did, you might risk sharing a personally humiliating moment with someone by making eye contact with them.

Some times, a person just needs a good cry. It's been a while since my last one.

Ellie Willaert is a sweet little 4-year-old girl that we met on New Year's Eve at a cancer fund raising event. When we met her, the inoperable brain tumor in her head had already disfigured her face and was challenging her motor skills. But she was beautiful and we fell in love with her.

That very night, my girls wanted to pray for her before bed and we each took turns. Then they said they wanted to pray again, and I had to finally cut them off after round three. We loved her.

Ellie passed into eternity, Friday night, her delicate little body finally finding permanent rest laying between both of her parents in her bad at home. Good news for her. But for the rest of us? Not so much. (You can pray for Pat and Niki as they have a funeral Monday.)

So when I got the news of Ellie's passing, I loaded my two youngest in the car and bolted to Chuck E. Cheeses. I hate that place and whenever they ask, I always find a reason to be busy or invent some diversion that makes it just not possible to do.

But I went to Chuck E. Cheeses. I did it for my kids and I did it for Ellie. In my own weird little way, I wanted to thank Ellie for touching our lives in a very brief but significant way. And it was there at the Chucksters that I lost control and started to cry.

Coming away from the experience, I'm realizing that there are only certain parts of life that I process in real time. My tendency is to enjoy the laughter, excitement and adventure in real time and not put it on a shelf for consideration later. I enjoy and process these in the present. But when it comes to loss or pain, I like to put things on the shelf and tell myself I'll think about them later.

These past 4 months have had a lot of changes, losses, disappointments or things that just didn't turn out how I wanted them to. When I got the news of Ellie pasing, it was just one of those things in the loss category that I put on the bookshelf for processing later.

Then, in the most unusual of places (like Chuck E. Cheeses), I take one book off that shelf, to consider and process, and they all come falling off. I end up on the floor, picking each one up and evaluating it and yielding up the ones to God that I don't want to put back on the shelf.

Some day, I'm going to tell my grandkids about Ellie Willaert. I'm going to tell them this beautiful girl helped me realize that loss and pain are part of life and that talking about them with God, with family and friends, when they happen is way better than ending up processing those alone with all the crazy noises, games and bad pizza at Chuck E. Cheese's.

Tuesday, February 3, 2009

A Hug for the Chimney Cleaner Dude

I had a blast with a little social experiment this morning based on a video I found on one of my favorite blogs. (Thanks Mike!) You can read Mike's more mature take on this video here.

After watching this video, I had to think of my father-in-law, Rolf Garborg. He is the most affirming guy I know.

I once witnessed him on an affirmation rampage at a little cafe in the Swiss Alps. It was amazing, after affirming the hostess, the cook, and the old men smoking pipes by the fire, he proceeded to affirm the dog.

Then the chimney sweep guy comes this morning and is explaining how a chimney works I go all Rolf on him. There is magic in the air that doesn't fade, even after I try to give him a hug.

Please watch this clip. It's 16 minutes and I promise that you will thank me afterwards and that you're even going to want to send me a message about your very own Rolfesque experience.