Thursday, October 30, 2008

Introductions are in Order!


Let me introduce you to a future cancer survivor.

We got some really great news today. It's 'normal progress' news, but it IS progress and we are thanking God for it.

When Von first arrived in Minnesota two weeks ago, his cancer levels were at 30%. Last week, they were at 7%. Today, they were at 0.8%. If you ask me, any cancer-describing number that starts with a zero is reason to have a bust-out-the-windows celebration.

My smart wife explained to me how Leukemia works and that this is just the beginning of a Lord of the Rings type battle.

It goes like this:
1) Cancer cells show up in the blood and bone marrow. They not only demand equal treatment but say they are the new guys in charge and they're going to multiply and even the local authorities won't stop them.
2) You beat back these cancer cells as fast as possible before they know what hit them and before they mutate or get more sympathizers to join them.
3) You defeat the rogue cells in the blood and while it looks like they are defeated, they are really moving to a safe spot in the spinal fluid to regroup.
4) You do some delayed intensification treatment to chase them out of the spine. you lose hair in the process and have some other painful side effects, but it's worth it. You flushed them out of their hiding place and killed them all...but they have one last stand planned.
5) Since you thought you killed them in the bone marrow, and the spinal fluid, the cells think the best place to make a last stand is back in the bone marrow and blood, so they regroup.
6) You once again do battle and finish every last one of them off in the blood and bone marrow.
7) You look at the carnage on the battle field and wait to see if there are any fakers laying 'dead'.
8) And you wait.
9) And wait.
10) And after 6 years from your first battle with the cancer cells, you are officially pronounced the victor. You get a burger king crown and go on to rule your kingdom in peace and harmony. And if you were gracious in the battle, you might just get to marry the sweetheart that was looking on during the ordeal.

Ok, I know that isn't the most medically accurate way to describe it, but since Von likes fighting the bad guys so much, I think it works and that is how I am describing it to him.

If you're near a root beer float, a record player with your favorite opera singer, or close to someone that looks huggable, celebrate with us today. God is good and we had the gift of today to enjoy it!

(And a special thanks to Hans for the most excellent encouragement card. I have some friends in the biz that might be interested in talking to you!)

Monday, October 27, 2008

Just a Spoon Full of Sugar...



Let me tell you, Mary Poppins is a liar! The sugar thing doesn't work.

In about three years, when this is all through, Von will be a master negotiator. He is learning the art now and practicing twice a day every time we engage him on taking his medicine.

We both have something that we want.

Me? I want him to take two squirts of his medicine. One that tastes awful and one that tastes really awful.

Him? Anything BUT the medicine.

So here is how it goes:

Me: Time for your medicine.
Von: (Mumbling through a hand covered mouth with panicked eyes) I don't want medicine.
Me: You have to. It's not open for discussion.

And then the discussion starts, him stalling for time, me looking for leverage to get him to take his medicine.

At the hospital it was easy. We had fake dog poo and the leverage I had was promising he could roam the halls placing the thing on the floor to trick the nurses. It worked beautifully, every time, on the same nurses. But at home, sisters aren't as impressed and...no leverage.

Sometimes, because of his salt cravings, he negotiates a pizza or chips or he negotiates a sit in the hot tub.

Once he negotiated for me to get a 'poke' with a syringe because he had to get one.

But tonight I made a tactical error in the negotiating process and the photo shows he knows he had the upper hand. He masterfully suggested a trip to Home Depot (complete with protective face mask and in his new 'pajamies'). But when I agreed to this too quickly, he knew he had me and asked for more.

"Home Depot AND a bag of Cheetos."

We shared the Cheetos after we got home. Win. Win.

Saturday, October 25, 2008

Big Mac

I haven't had a Big Mac in years. But last night I had one that I will remember for the rest of my life.

This morning, I found three photos on my phone that tell the story.

1) Von shivers, acts funny, and after waiting a day for him to improve, we take him to the hospital where they admit him. He gets the Iron Man port put back into his heart and he is overcome with sadness (and some salt cravings) as he realizes he has to spend a few nights back at the hospital.


2) Uncle Kent and Aunt Betty hear that Von is in the hospital, and Betty being a cancer survivor, and having a grandchild who survived cancer, dropped in to encourage us. Knowing we were famished and that Von was craving fries, they brought McDonalds. Von, deeply touched by their kindness (or just happy to eat) goes into goofy-face mode.

3) After Kent and Betty leave and the McDonalds bag is tossed into the trash for a three pointer, Von feels a deep sense of satisfaction and offers to give me a head rub. (He gets this from his mom). I receive his kind offer and feel the happiest I have in a few weeks.


I can't quote it exactly, but there is this scripture in the bible that says if you give a cup of cold water to someone, God is so blessed by that that it's almost like you are giving him the cup of water and he promises you won't lose your reward. I had to think of Uncle Kent and Aunt Betty and their bringing a Big Mac to the emergency room last night.

I'd like to think that if my interpretation of that scripture is close to right, at about 10pm last night, God had a Big Mac, thanks to Uncle Kent and Aunt Betty.

Thanks Kent and Betty!

Friday, October 24, 2008

Mr. Genius


We had a visitor yesterday.

Bret dropped into town to do a worship concert gig. He is a fascinating guy. His specialty is making people sound good, especially when the pressure is on and they have thousands of fans in the stadium that expect their favorite musician to sound just as good live as they did on their CD. I could go on all day about how cool Bret is and the master artist he is with a soundboard and effects. He is pure genius!

I work with his wife, Barbara, who is also a genius. She writes, edits, and helps me figure out important stuff like if I put too many commas, in this sentence. (And she does it without being a smarty pants, which is why she is so loveable.)

Barbara sent a whole heap of goodies for Von with Bret and because they have two boys, the things they sent were perfect for our little guy.

(Sorry B, you can't tell from the photo but he really was happy with the gifts, especially the necklace that lights up like Iron Man's heart).

The drugs Von is on affects his mood and all he wants to do is eat salty things. He keeps asking for pizza and specifies 'with salts on it'. He also gets a little grumpy at times but the upside, he also gets really goofy.

Yesterday's lab tests were given to us over the phone. Von's cancer levels are slightly reduced and his progress is normal.

Normal....

As a parent, I can't tell you how disappointing 'normal' is. It wasn't bad news, but it wasn't glowing either. I wanted, "We've never seen a little boy fight cancer with such success!" I know, it's only week one.

I was reminded today of Psalm 118:8: "It is better to trust in the Lord than to trust in people (or doctors or lab reports).

You may need to help me remember this again in a day or two.

Wednesday, October 22, 2008

First Checkup


Thanks to all our friends and family for the overwhelming amount of prayer and love we are feeling.

Von goes in for his first weekly IV chemo and a follow-up bone marrow biopsy to see how the treatments are working on the cancer.

You can pray for that to go amazingly well. As you can imagine, Von is anxious about having to return to the hospital.
(Although he is hoping to see, and someday marry, the nurse with a purse, Carrie).

It was cute today. Von overheard Lisa talking to a friend on the phone and heard the concern in her voice over his well-being.

He said in the cutest little man voice, "Don't worry about me, Mom. I'm going to get better."

We are agreeing with Von.

Thanks for your prayers!

(Now that I look at this photo, I'm realizing he wears this shirt a whole lot as most of his other blog photos have this shirt in it. He has more than one shirt, I promise!)

Tuesday, October 21, 2008

85%



Today was a really good day. I enjoyed the gift of today, the people around me, the food before me, and the sunshine outside. It's amazing how the good things of today become when you are unsure of the things of tomorrow.

It's funny how our finite human minds want assurances for tomorrow.

Relating to the issue most on our minds these days, Von's life expectancy is one of those areas where we want an assurance. The doctors are squeamish about throwing out numbers, which I respect. They don't want to play God in the patient's life (and probably don't want to get sued either).

If you press them, they won't tell you Von has an 85% chance of living or a 15% chance of dying, they will tell you that the incidents of his type of cancer see an 85% cure rate.

Cure rate/chance of living...call it what you want, the temptation for me this week has been to look to a percentage and cling to it for some sense of comfort and put my heart at ease. And in that number, I have found no hope or sense of comfort.

I've asked myself if a 90% would make me feel lots better or a little better. What about 95%? I even raised it to 100% chance of living in my mind, and even that felt empty.

Through this, I was reminded that God is the only thing I can look to or find comfort in. He knows the number of my days. He knows the number of Von's days. (Yeah, he knows yours too!) I have given Von's future over to him and in that, I find a sense of peace that God has a plan and it will all work out in the right way and time.

Yep, today was a good day.

Sunday, October 19, 2008

Punch to the face


I am daddy-happy to report Von was released from the hospital today and will continue his treatments as an outpatient. It was difficult. Can any parent hold their kid down so they can get chemo shots in the thigh and do it without crying a little and wishing it was them instead? But he was a brave boy and settled down after a promised visit to Papa Rolf's hot-tub. It is good to be a family together in a home again.

I remember a time when I was a kid on the school playground on a nice fall day, enjoying recess when I was stunned by a blow to the face. The first 5 seconds of that incident were like the first 5 days of this week since we learned Von has cancer.

On the playground, there was this feeling of confusion, before the pain arrived. Something had hit me. Or was it someone? The class bully? My head turned and searched for answers in those few seconds before the pain arrived.

Then as the pain started warming up my face I quit looking for the school bully or asking questions about why, and started examining the damage to see if there was blood and to feel if there was still an ear attached to my head.

After feeling an ear, I became aware of the silence in my peers as they looked on at my pain and wondered what my reaction would be. My focus shifted from the damage to my face to figuring out what I was going to say so that I didn't look like a complete fool for it.

After those brief 5 seconds, I found that a stray kickball had hit me in the face, knocked me silly, and I would recover.

I thought of this today as I looked for a way to describe this past week. I've wanted to communicate and express our gratitude to friends and family for an outpouring of love and prayers. But I guess I'm still like that kid on the playground that is a bit dazed and silent trying to figure out exactly what hit him, why and the next steps to take.

Tonight, we sleep in a normal bed, Von by our sides, and rest in the fact that God knows what he is doing even when the occasional stray kickball meets an unsuspecting obstacle.

Friday, October 17, 2008

Iron man



I got to meet Iron Man today.

I flew to Minneapolis today with our three girls and caught up with the little Iron Man, Von, and his amazingly hot mom in the children's hospital. They told me Von had been grumpy and fussing quite a bit. But when he saw his sisters come through the door, he quickly started showing off.

He showed us how to recline the hospital bed at the touch of a button.

We learned how the blood pressure cuff is really called the 'hugger' that hugs your arm.

He also showed me the coolest trick. You can press this one button and a nurse comes busting through the door in panic to see if you are ok.

"See dad?", he said, proud of himself for figuring it out and pleading for me to try it.

Von saw the movie Iron Man (well, parts of it) recently and really has found something to connect to in it. In the movie, the hero was operated on after being wounded in a battle. A doctor put an aparatus in his chest to keep him well that looks like a saucer. So when Von got a saucer shaped port that delivers chemo directly to his heart, he thinks he has graduated to 'iron man' status.

"See Sofie? Iron man!" he beamed while lifting up his shirt.

It was great to be a family and together again and see little Iron man at work fighting the bad guys in his body. Iron Mans, even the almost 4 year old versions, need a family to fight the good fight.

Wednesday, October 15, 2008

Jr. High Swimming Pool Locker room


Today was not the worst day of my life.

Today doctors told my wife and I that we need to start a 3 year regiment of Chemo treatments for my 3 year old son because he has Leukemia. (Kudos to the doctors for being masters at delivering bad news. I bet my mechanic must have skipped that class.)

My spell checker tells me that this disease is foreign to me. And while I've heard of it, I don't really know what it means.

As a younger man, I once imagined what it would be like to get some really bad news like this.

It feels so weird now that it is happening....like I’m supposed to be more dazed than I am. I always thought something bad like Leukemia would be the worst day of my life. Actually, the worst day of my life was when I had to change in front of my peers for Jr. high swim lessons in my pre-pubescent existence. I'm still whirling from that one.

I cried some today. I did fine at the grocery store and at the service station that fixed my flat. I was strong for my daughters in explaining the more naive version of Von's sickness to them. In my sadness for what Von and Lisa will be going through, I came to realize that God is ok with us crying.

As my friend Rick Suarez told me today, King David, the man after God's own heart, did two things in the Psalms. He praised God and he cried out to God. That makes me feel good. Big warrior David not only did the right thing and praised God, but he also did the human thing and cried out to Him.

In the next few days, I'm going to cry a little, praise a little, and be sure to laugh a little. Von and Lisa wouldn't want it any other way.

Monday, October 13, 2008

International Travel

I have to brag on my friend John Lasater. (Not the guy with cool cowboy shades)


He isn't one of those guys who has trotted all over the globe. But you wouldn't know it by the way he eats tacos or rubs shoulders with the locals here.

First, his art...it's amazing and he was gracious to spend a week with us, teaching us to paint and exposing us to a different way to view light and colors. Amazing!!! www.lasaterart.com


This is my very favorite piece he has ever done. (Can't collect this one, already sold!)

It's amazes me how universal art is. Each time John would paint in public, people gathered. And even the most hardened and practical person walking by couldn't help adjusting their course to get a peek at what was behind the easel.

He's also fast and focused. The rainclouds were building and the light was fading, but John whipped out what I think was his best piece in just moments. It was a dizzying whirl to watch, but the end result was amazing. (My wife also got in on the action and got to paint as well).

Not only is he talented, he is humble. He did this painting in 45 minutes during a church service and then gave it away to the 'bird lady' after the service. (The bird lady deserves her own blog entry and explanation some time)

And we would dump him off at these places to paint, and leave him there for hours and he acted like it was no big deal.
And everyone loved him. He made friends, got offers for bottles of whiskey in exchange for his art, and coaxed the town hermit out of his house for a peek at his art. He is a real pro at this international travel thing.

Thanks John! Let's do it again real soon!

Tuesday, October 7, 2008

Artist


Do any of my blogger friends recognize this guy?

Here he is painting a pond on the golf course. He is here all this week and this afternoon we head out to an old Hacienda.

Will post some of his work later this week.




I'm also posting a photo of what I was supposed to be painting yesterday. I'll refrain from posting my interpretation until the Master Artist can give me a few pointers.

Friday, October 3, 2008

Our Family is Growing

Between wrapping up a major publishing project, surviving a silly mountain biking accident leaving me mono-handed for a few days, and spending a week in the US on business, I've gotten a little behind in blogging.

Big news! Our family is growing. We have a teenager living with us and will be the house-helper (fancy word for maid).

Her name is Eva and she is a Mejica Indian who is beautiful and simple. I hope we're not ruining her. My girls are here introducing her to Tom and Jerry cartoons.


Our girls love her and Von must still think she speaks English by the way he talks to her.

Our friends say it is an incredible opportunity for her to be here in our house. But honestly? I feel badly for her.

Imagine leaving your little Indian village in the mountains, being transported 7 hours away to live with a family that doesn't speak a language you understand and then have to wash their laundry and take out their trash and be on call 24 hours a day only get $30 a week for it. (Am i the only one that think this appears a whole lot like child slavery?)

We're trying not to spoil her with too many fun things like CD players and modern looking clothes. My parents tell us that for Eva, with only a 3rd grade education, it's an incredible opportunity for her and the pay is better than what she can get elsewhere.

She has her own private quarters and her wardrobe has doubled (by my wife's and my mom's help) in the first two days she has been here. And she giggles all the time, which is nice to hear, but also makes me suspicious that she saving up stories on the Gringo family to share with her family back home.

Spanish is a second language for us and for her, so it will be interesting. For now, we'll take it easy on her and ease her into the maid role at our house. Hopefully between the love we will pour out on her and the Tom and Jerry Cartoons, it won't be too bad for her.