Archive for October, 2008

Make-a-Wish Trip, Day 1

Day 1

Exhaustion. Pure exhaustion, and the trip is just beginning. Hopefully, we will be efficient sleepers, so that we can be ready for the next few days…

We started off this morning at 4:30, getting ready to be picked up by a limousine, which was a first for all of us. The driver was very kind, and gave us the first of many thrills for the day. We were met at the Minneapolis/St. Paul airport by a Make-a-Wish volunteer named Martha. She escorted us through check-in and security, and waited with us a while at the terminal.

When we boarded the plane, Ian was allowed to sit in the cockpit for a few minutes and work the controls.

We had an uneventful flight (the best kind), and arrived at Orlando to 70 degrees and lots of sun. We were met there by a volunteer from Give Kids the World (the name of the complex where we are staying) named Helen. Helen took us through the baggage claim to the car rental.

Half an hour later, we pulled into Give Kids the World. This place is amazing. It’s perhaps the most kid-friendly place I’ve ever seen (and, yes, I realize that how close we are to Walt Disney World). Within minutes of arriving, Ian was given a stuffed Mickey Mouse, and that wasn’t the last gift he received. We ate a quick lunch (with ice cream), checked in and then explored the village.

After supper at The Gingerbread House (an on-site restaurant), it was Christmas. Every kid got an age-appropriate present; Ian chose a Sorry game.

Click here for pictures of the trip. Click on a thumbnail to enlarge it, or just view the slideshow.

Tomorrow, we hit Disney Hollywood…

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108300 Seconds and counting (Temporal Echoes of the Eternal, Events, Make-a-Wish Trip)

Yes, we’re a little excited about the upcoming trip. We’re all looking forward to a special time away, when we can relax and forget about MRIs, treatments and obligations. We’ve all got attractions that we especially want to see, but all three of the adults are looking forward to watching Ian enjoy everything.

We’ve verified that we’ll have Internet access at our villa, so (hopefully) starting Thursday evening we’ll be making nightly daily posts here at on the Caring Bridge site. Because of limitations on Caring Bridge, this site will have more pictures, and video. I’ve also created a Flickr account, so I’ll be putting pictures there as well; as soon as there are photos there, I’ll post a link to the side.

In the meantime, please pray that the weather forecast clears up a bit for Sunday

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Thank You For Being a Friend (Graces and Mercies, Tom)

A friend loves at all times,
and a brother is born for adversity
- Proverbs 17:17

We’re getting a big blessing this weekend. One of my best friends and his lovely wife are visiting from Columbia, Missouri. Paul and I met (if my dim memory serves me) in preschool, and we have been friends ever since. Through grade school, junior high and high school, we saw each other daily, and at least once or twice a week through college. I moved to Minneapolis in 1993; Paul and I have made occasional attempts to catch up with one another since then, but this is a rare opportunity to really see what the past 15 years have done to each other.

That, and play some of the video games that we used to play in college, like Blades of Steel and Super Dodge-Ball…

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More Thoughts On the New Normal (Tom)

I almost gave this the label (Ian), but that’s not true; this is about me.

I was listening to a local Christian radio station on the way to work Thursday morning.  The DJ read a post from a blog by a young girl who has cerebral palsy, as well as other issues.  She talked about how much it hurts when other people stare at her.  My first thought was:

How awful!  I would never do that.

My second thought:

Thank you, Lord, that my child doesn’t have to deal with people staring at him.

My third thought:

Oh yeah…Ian will have to deal with that.

I had just remembered that, when we go to DisneyWorld (18 days and counting), we’re going to draw attention.  For every ride, we’re going to go straight to the front of the line. That sounds really cool, but I’m sure it’s going to draw attention.  We’ll also have some kind of stickers that announce we’re a “Make-a-Wish” family.  More than likely, some people will stare at us.

So be it.

They will see a little boy who is getting the reward from a really rotten summer.   They will see parents to are getting the gift of being able to see their only child have the time of his life.  They will see a grandmother who will be enjoying time with her family that is precious and special.  They will a family who are rejoicing in the midst of circumstances for which nobody would ask.

Let ‘em watch.

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Update (Ian)

This isn’t going to be a long post–I’m at work, duty calls, etc.–but I wanted to get something up.

Ian continues to do pretty well. He’s been falling more, and complaining about his legs hurting. At this point, we’re chalking it up to inflammation (as a result of the steroids). Deb and I are going to try managing his diet better, in the hopes that it will reduce the inflammation.

I’ve noticed that the past few days, he’s had a harder time swallowing. This one scares me. It could be a sign of radiation scatter…or of the tumor. I think that he’s getting sick and tired of me asking him if he has any problems swallowing, because when I ask him about it, he just indicates that everything is fine.

As far as we’re concerned, Tuesday can’t come soon enough. At this point, the waiting is the hardest part (hey, that sounds like a song…)

* * *

I’ve had a little bit of money saved up from my birthday last month, and I’ve been spending waaay too much time figuring out what to do with it. I took a cue from a devotional yesterday that covered materialism; one fo the standout sentences was to “want what you already have.”

Ian and I have been sharing a Nintendo DS game system for a while, but lately he’s been hinting that he would like his own for Christmas. The main reason he gives is that he would like for the both of us to be able to play each other at the same time (the systems can be connected wirelessly, so that multiple people can play each other). I got to surprise him last night, when I took him to a game store and bought another DS. When he realized what I was purchasing, he coyly asked:

“Dad…what are you going to do with the old DS?”

(I love pausing in moments like these, just to stretch the tension out a little bit.)

“I don’t know son.” … Pause … “I thought I might give it to you.”

The joy in that little boy’s heart was worth every penny. I got several hugs and kisses, and even a few from his stuffed raccoon, Fisher. (I seem to have a good rapport with stuffed animals.)

* * *

Ok, looking back at previous posts, maybe it is a longer one.

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On the other hand… (Graces and Mercies, Tom)

I asked Deb to look at that last post, and she thought it was a little big fatalistic…OK, maybe a lot fatalistic. She pointed out that, not only are do we still have a live little boy, he’s actually doing very well. There are no tumor symptoms, we’re working on the existing conditions successfully, and he’s doing very well in school.

So, it’s obvious that something is causing me to paint everything black from time to time. It’s sometimes difficult to see spiritual warfare for what it is when the enemy is actively engaging me, but that’s 90% of the battle, IMHO. So, in order to more effectively combat this, I’ve started reading the followup to Victory Over the Darkness. It’s The Bondage Breaker (once again, by Neil Anderson). I’ve just started it, but from what I’ve read so far, it seems like one of the best materials I’ve seen that deals with personal spiritual warfare. The premise is simple: Satan’s weapon is the lie. Our counter-weapon is God’s truth.

Stay tuned for more postings as I get more into this book.

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A Slow, One-Way Trip (Graces and Mercies, Pictures)

Deb and I were looking for a blank video tape last night, and happened to find one with some home movie footage from 2005. We watched Ian, then 3 1/2, looking for Easter eggs and playing in the rain. It has occurred to me before, but was driven home last night, that if I knew then what I know now, I would be heartbroken.

Our temporal-ness is a mercy. I was suddenly glad that I had almost seven years of getting to be with my son before we found out that he had a DIPG. If we lived our lives with full knowledge of what was to come…every blessing, every heartbreak…then I don’t think we would be able to truly live in the “now.”

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