Friday, May 30, 2008

Why Me?

One of the most common questions I get is do I know how Tyler got Burkitt's? What caused this to happen? Often I think their real question is "How do I protect my child from this?" It seems very difficult to accept the randomness of cancer.

And then there is surviving cancer. A brochure I read today said "survivor's guilt" was a major emotional issue, especially for teens. Why do some live, while others die? Is there a grand purpose, or is it totally random?

I never really thought about it much. Probably because Tyler never really asked the question. He just focused on the fight before him. It is what it is. Just bring it on.

But lately I have been thinking about it more, mostly because it seems a lot of people have been giving me their opinions. Is it all part of God's master plan or a random act of the cosmos? A pastor told me we should just accept everything, and be happy with whatever happens. Considering we were sitting in a pediatric oncology floor, I felt like tearing his head off (I wonder if he would still be happy). But since there were witnesses, I decided to just let him talk. But I did envision giving him a giant mega wedgie. Elastic over the head. It actually made me feel a lot better.

But I think this is the real question. Why would God allow into the world a disease that kills children, and then hide it from us all? And hide it in a place that takes years, some times generations, to discover. Meanwhile many continue to suffer and die? Why? I really do not know. But I think I have an idea.

I do not believe that any of these kids are supposed to die. That is not the plan. I believe we are supposed to stop it. I think the cure is hard to find because we are supposed to work hard to find it. God does have the ability to wave His hand and heal with a miracle (and I believe He sometimes does). But I think more often God puts the power of the miracle inside us, and He expects us to use it. I believe we are all created to do something great in the lives of other people. I believe we all have God-given gifts and abilities to accomplish that task. It is not always easy to accomplish, but tell me anything worth having that is easy?

What will people remember us for? Are peoples lives better because we lived? Did we make a difference? Did we use to the fullest the gifts and abilities God gave us? Did we give our best effort, and did we do it for the right reasons?
--Tony Dungy

I never forget that someday I am going to stand before God and be held accountable for how I developed what he has entrusted to me.
--Bill Hybels

During the long nights in the hospital, I watched a lot of movies while listening to Tyler's laboured breathing (There is an odd intensity sitting in a dark room, listening to chemo drips, and checking every so often to make sure your son is still breathing. I wish this on no one). One night I watched "The 10 Commandments". It seems Moses was a really cool guy, but I keep thinking of the other people? They waited in a desert for 40 years, afraid to go to their Promised Land. Why? They said it was full of powerful enemies with no intention of leaving. They realized God did not say "Here is your Promise, just take it", rather He said, "Here is your Promise. Now earn it. Fight for it. Bleed and die for it. Then it will be yours." God was always there, but He wanted them to participate in the miracle. They were unwilling.

Fan into the flame the gift of God which is in you…for God did not give you a spirit of timidity, but a spirit of power, of love, of self-discipline.
2Timothy 1: 6-7

We can beat cancer. But it will not easy. If it were, it would have been done long ago. Every single one of us has the power to participate in the miracle. Our family has experienced thousands of miracles, all in the form of notes, comments, prayers, and gifts from all the many people who have rallied to Tyler's side. We have received the miracles of the compassion of the nurses, the data from the researchers, the skills of the doctors. God was always there, but He was going through other people. Every single note, email, and gift added to the miracle of Tyler's strength to fight this battle. How can we possibly respond to this? Only to go out and be a small miracle to someone else.

I am only one, but I am still one. I can not do everything, but I can still do something. I will not refuse to do something I can.
--Helen Keller

In Matthew 25, Jesus said He has given us all gifts, and we are expected to use them. He then said that, in the last days, He will divide the world into two groups. The only difference between the two groups is what they did or did not do for all the people in need. He made it very clear that He believes love and compassion are verbs. They require action.

"I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."

I do not know why some suffer and others don't. What I do know is that we are placed here to stop it. It is too late to save Brett, Rob, AJ, or Christian. But we can use their strength and their memory to save the others. And all of us, some where and some how, have the opportunity to participate in a miracle in someones life.

If you have learned anything from me through all of this, do something with it to make a difference - to make things better
--Melissa Sengbusch, 2 weeks before losing to cancer at age 19

If my struggle with cancer galvanizes actions of goodness, I can rest assured that even if I succumb to the rogue cells, I will leave behind a legacy of victory. Dying is not what scares me, it’s dying having had no impact. If there be a purpose, then this is my hour. I have tried my best to show what it is to persevere, and what it means to be strong.
--Miles Levin, 4 weeks before losing to cancer at age 18

That is what I believe. I apologize if I sound "preachy". If you disagree, just imagine giving me a mega wedgie, and go on with your day. If you agree, do something. Anything. Hug someone. Call someone. Help someone. Here are a couple of easy ideas.

1. Sign the petition. AJ's dad wants one million signatures. Why one million? Because a lower number would be too easy.

2. Donate to my Team in Training run from cancer research though The Leukemia Lymphoma Society. Why am I running? Well, that's probably because I'm stupid. But the cause is critical. Funding has been severely cut over the past several years.

You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.
Dr. Seuss


Team in Training: Still on track. 39 down, 434 miles to the starting line. I had to finish the last mile at home. I got a late start, and Glacier Ridge Park was closing before I finished. The park rangers came looking for me and drove me back to my car at closing time. I wonder if that happens at the marathon?


Mom said...


Thank you for this beautiful message. I believe with all my heart that God has a purpose for each one of us, and it is in difficult times that we are given the opportunity and vision to know that purpose. At times the mission seems daunting but not with His power and grace behind you.

I honor you and Tyler for the courage and action you both have taken not only to fight this terrible disease but to make sure this difficult journey will bless, and benefit, and heal many others.

God Bless you, you both have strength beyond my comprehension, but would God choose anyone less?

On my way to work in the Discovery Cancer Shop today - thank you for the encouragement.



Marianne La Rosa said...


Words well written! That is exactly why I cannot NOT give the Relay For Life my time and energy. My mother's cancer journey brought me to a similar place. The people I know who are involved with Relay For Life are people who truly "get it". They know what is really important in life and they are willing to work hard to make things happen. To find your purpose, in what ever way fits for you, is to find peace despite the pain and suffering of cancer. That truly is the miracle. May God bless you as His Spirit abides with yours and leads you on this difficult path.

Anonymous said...

Dear Alfriend family,

Thank you for quoting my son's words about his wish to have an impact. May Tyler go from strength to strength in this battle.

Jon Levin, Miles's dad
Miles died August 25, 2007 of
Rhabdomyosarcoma just a few days short of this 19th birthday.

JaBLes D said...

You and your son are inspirational. My Godson, Nick, was diagnosed 8 weeks ago with Burkitt's. He's 13. He's about to go round three with chemo. I have never been so heartbroken yet uplifted by something. These kids are just an awesome testament to the human spirit.

Keep up the good writing. I've been reading your blog since the night Nick was diagnosed.