Archive for April, 2007

I thought I would share

Thursday, April 26th, 2007

Hi all, I just got back to KS on Tuesday. Not much has changed, I’m doing okay. I gave this speech last night and thought I’d share it with you. I cited Lou Holtz in one spot, but probably should have in a couple more spots. I highly suggest reading his latest book.

Good evening. In the first instance, I would like to thank the High School Honor Society for the opportunity to speak to you on this day. Just a few short years ago, I was in my high school’s National Honor Society. Currently I’m an unemployed 25 year-old that lives with my mommy and daddy. I’ve also recently been into some drug experimentation. Okay, before you re-think your involvement in this organization allow me to explain…

I may be unemployed in a sense that I don’t get a paycheck, but I do have a job. A job I got, but didn’t apply for – cancer. I wish I could have declined, but it wasn’t an option. The stakes are very high. In order to succeed you have to be a good manager and an advocate. All of a sudden, I’m a boss, I have a staff in the form of doctors, nurses, family, friends, and others. It takes some leadership and courage as well. You have to recognize when things are not up to standards. You have to (in a sense) “fire” a person or look to someone else to do the job in these situations. I believe that great rewards await those who hold high standards. I believe as well that confidence, sacrifice, and your quest for knowledge will inevitably lead you to become successful in your future endeavors. From that point, if you use the tools that you’ve learned, this will bring you to days of solidarity and pride in your work.

Since some of you are in an Honor Society I think it is important to get a sense of what that means and to you new inductees here is what I think it means:

Honor means self-discipline. You will especially learn about this once you enter life after high school. It will be hard to stay in and study when it seems like all of your friends are going out and having fun. It will be hard on a cold morning to wake up for that 8:00 class. It’s easy to cheat on your schoolwork. It will be easy to succumb to alcohol and drugs. But what do you think? Success is really a choice you make and when it comes down to it, nothing worth doing ever comes easy. When I was recovering from surgery, I would guess that my leg (which I am lucky to have) swelled up to twice its size. I was in a hospital bed without getting up on my feet for days. When I did for the first time, the pain was unbearable and I could only put my foot down for a few moments. Picture a large amount of free fluid in your leg all trying to rush down to your foot with nowhere else to go. My physical therapy and occupational therapy was no picnic and I groaned whenever the therapist came to my room for our sessions. However, if I wanted to ever walk again, I was going to have to go through a lot of physical pain. You bet it was hard, and you bet it was worth it.

Honor means commitment. You know or will know what it is like to have many people counting on you and looking to you for leadership. Following through with something you’ve started, and getting done the things that you said you were going to do are very important. Sometimes a half-hearted commitment is worse than no commitment at all. If you don’t give your undivided attention into getting something done where others expect you to, is letting those people down. It’s better to shy away from something if you aren’t sure you can commit to wholeheartedly. Tying into commitment is having no excuses. When things go wrong, it’s the successful people who don’t make or find an excuse. They don’t have time because they are too busy finding solutions. The great football coach Lou Holtz tells us, “You can tell a lot about a person’s character, not by the mistakes he has made, but by how he has handled those mistakes. The person who takes responsibility for his errors and does what he can to fix the problems that he’s created is someone you should respect. The person who has never made a mistake in his own mind, who obfuscates and attempts to deflect blame, is someone you should approach cautiously.” We’ve all made mistakes, but not everyone accepts responsibility. It’s hard, but once again it’s the right thing to do. It takes a confident person to admit that they’ve messed up.

Honor means respect. I think a significant portion of what respect is, is showing that you care. I have learned that you always make a good impression when you are prompt. When you are late it sends a signal that your time is more valuable than everyone else’s. When you get jobs later on you may have to think about things that could make you late, for example traffic. Not that it’s a big problem around here, but it could be someday to you. I learned quickly that I couldn’t count on the highway to be clear (which when it was, was the fastest way for me to get to where I was working) so I had to learn to listen to traffic reports on the radio instead of blasting some sweet tunes. I also learned different routes in case the main one wasn’t going to be an option if I wanted to be on time. It was all about preparation, which is a very important component to your success as you are learning about and will even more. The great golfer Ben Hogan once said, “Playing a tournament is almost an anticlimax. Tournaments are won and lost in preparation. Playing them is just going through the motions,” now I don’t know if I like the “going through the motions” part, but his point is exactly correct. No matter what the circumstances, you can not perform under pressure without adequate preparation.

When I first heard Lou Gehrig’s famous speech I wondered what the heck the guy was thinking. Here’s a guy nicknamed the Iron Horse for how strong and amazing of an athlete he was and then in his prime he finds himself dying of a rare disease that ended up being named after him for many years. “Today I consider myself the luckiest man on the face of the earth,” he said. How can you consider yourself lucky in the most unfortunate of circumstances? Well, now I understand where he is coming from. I grew up with a roof over my head, plenty to eat, and a loving family. There are plenty of people in the world who do not have one of those things. I also was born in a country that gives you every opportunity to succeed. Every opportunity, even in the face of adversity. My adversity at the current moment is cancer. I hope yours won’t be, but I know this for certain, you’ll have adversity. Everyone does. Rely on self-discipline, commitment to excellence, no excuses, and respect to succeed in all areas of your life. It’s your choice to succeed, even if life’s path isn’t what you expected. I didn’t expect to be 25, unemployed and living with my parents, but I also didn’t expect that what I say and do lately mattered to so many people. If I can change people’s lives for the better, if I can influence just one person in a positive way…well, then I’m lucky too. Having cancer has brought me closer to my family and friends. It’s opened my eyes to so many things, I’ve learned so many valuable lessons that I would have otherwise missed out on. Even if cancer ends up taking the life from this body, it will never touch my fighting spirit, a spirit that lives in each and every one of you. Let it show and never let it go.

And finally, in this speech I’ve wanted you to notice how many times I said “I’ve learned.” I have been repeating this because I believe that a day without learning is a day without living. I think it’s good that in the morning you should think about what you wish to accomplish today, and at night reflect on what you have learned. You should always be learning…even on those days you get excited when school is cancelled. Thank you.

From Mom: Returned to DC

Tuesday, April 17th, 2007

We had a restful Easter break at the farm and Jared
was home for the weekend.  Jonathan got in a morning
of turkey hunting, spent one night at his brother’s
house in Hays, and enjoyed visiting with a friend and
former coach who dropped by to check on him.

On Sunday We arrived back at the National Cancer
Institute in Washington DC with a down pour of rain
and cool temperatures. We got soaked climbing down the
stairs of the plane, crossing the runway, and then
climbing the outdoor stairs to get into the Dulles
Airport all during a blinding rainfall. We were wet
and cold and had to wait nearly 45 for a wheelchair to
assist Jon to the area where we were to retrieve our
luggage.  What an ordeal our arrival was!

Now we are settled in to the Children’s Inn at NIH
where Jonathan is undergoing his third round of an
experimental chemo treatment. This morning he had a
phlebotomy workup and a CT scan. At 10:00 we met with
his clinical doctor and heard the disappointing news
that the tumors in his lungs had increased by 15%
since February.  Earlier in the week we had heard that
his last PET scan revealed a slightly different story.

The PET scans still indicated multiple lesions in his
lungs. While some of them had remained unchanged
others were significantly decreased in intensity and a
number of them no longer demonstrated increased FDG
uptake.  This meant that the metabolism rate inside
his tumors was decreasing.  We were sure that we were
going to receive good news that the tumors were
shrinking also. The inside of the tumors are changing
but overall they continue to increase in size.  We
decided to continue with one more round of this drug
since obviously it was slowing down the growth rate
but now they are considering him for another clinical
trial that might open up in June.  He will have to be
tested to see if his tumors have a certain marker in
them so he will undergo the blood testing next Monday.
It will take up to ten days for the results to come
back.  The future is unknown at this time but we will
continue on the current regiment with 5 days of chemo,
2 days off, five days of chemo, and then two weeks off
to rebound.  Jon will return to NIH in May for more
tests and then they will tell us if he qualifies for
another study or if he can continue with this one.

Jonathan looks good and is maintaining his weight for
now.  His appetite is improving.  He still remains
fatigued, has trouble sleeping, and has difficulty
walking very far.

Right now Jonathan is busy reading one of Lou Holtz’s
books and is preparing for a speech he is giving at an
up-coming banquet.

We will be home next week and I am looking forward to
wrapping up another school year. Robert will be
returning with Jonathan on May 12 and I will stay
behind to finish the school year and run the farm
which for me means feeding the animals and fixing up
the flower beds!

Please continue to keep Jonathan in your prayers.  We
really need that miracle now.  We can’t wait much
longer.

Sharon