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Wednesday, February 29, 2012

Like a Hurricane

Rain and work, my family and cancer, God and politics, coffee and sleep. These are the things I think about each day. When I was a kid I just woke up and started playing with my toys. I played with my dog and I play with my friends. I didn't have to think about the workings of this world, I just lived my life as it went along. These days I feel the weight of the world and the demands of this life are much too heavy to carry alone. I think about the events of my existence and I try to make sense of everything but it cannot be explained by chance. When I say I feel blessed, I mean that I am blessed by more than the universe that I live in. Everybody gets lucky in sense and everybody feels the vacuum that sucks the life out of them every day but not everyone believes in a higher power. What matters the most when everything in our world is falling apart is that We the People stand in unity and fight our common enemy. When our enemies are too many we need to choose our battles. I believe in a final judgement because no one is lucky enough to just die and get away with a self indulgent life. Everyone matters and each person plays a part in one another's journey. Many people will agree and many will disagree but what would the world be like if we were all the same?

Today as I was driving through what looked like a wintery hurricane, I did not feel like a kid anymore. I felt that there was nothing to be afraid of, even with the wind blowing blinding snow and rain. I knew that the weather would continue to be merciless but I continued to press on towards the goal. This life is full of violent storms that tear our hearts to peices but there is one place that we can find refuge. The one thing we can share is the one thing we cannot be given except by the one who is the author of life and Love.


1 John 1:16-21
And so we know and rely on the love God has for us.
GOD IS LOVE.

Whoever lives in love lives in God, and God in them.
This is how love is made complete among us so that we will have confidence on the day of judgment: In this world we are like Jesus.
There is no fear in love.
But perfect love drives out fear, because fear has to do with punishment.
The one who fears is not made perfect in love.
We love because he first loved us.
Whoever claims to love God yet hates a brother or sister is a liar.
For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen.
And he has given us this command: Anyone who loves God must also love their brother and sister.

Thursday, February 23, 2012

Heartbroken

I think I had a dream last night and I don't remember many details, as most dreams are hard to remember, but I remember the emotion behind it. I felt like my eyes were tired, like I couldn't look into the face of cancer anymore and show my bravery. I felt like I was heartbroken and then today that dream began to materialize. I just read one post on facebook, just one post from one person that spoke of 3 children that died in the last 18 hours. I have become aware of over 100 kids with cancer since my own sons diagnosis and I have become aware of many who have passed away as the cancer consumed their little bodies. I am aware that on average 46 kids are diagnosed everyday with cancer and 7 die. Today I knew of 3 that died which means there may have been more than the average 7 since there are thousands more that don't even use facebook. I also heard many parents who have children doing well with their treatment who have felt threatened by cancer after remission. I don't want to be one of those parents because I wish my son never had cancer to begin with. I face cancer everyday, but today is different, the losses are to many and are no good reasons, none.

It seems that life moves at a pace that no one can keep up with, but it is also a race to get as much out of it before it expires. We run this marathon like it were a 40 yard dash and we push and shove to get ahead because it is a competetive race. There is very little room for mistake and those who are good at what they do win when they minimize their mistakes. Most people like winning and no one enjoys losing. With most things in life there always seems to be a prize, but for kids with cancer these prizes are to far out of reach. We all know life is too short but we rarly look at the short life that kids with cancer have. You may be in this race, but you don't have to be the winner, you just need to never give up, and when you never Ever give up you cannot fail. Watch this video and imagine the life of a child with cancer as I imagine my son in this race we call life.

Monday, February 20, 2012

Life, Legacy and Love

I came home early today from building fences because Jenny got a call that her grandfather on her mom's side was in the hospital from a heart attack. She got Emma who was home from school on the holiday and Lincoln and left for Lebanon about an hour away from Salem. She could only visit for a few minutes in the ICU and then she had to bring the kids back. I told her to pick me up on the way home so I could take the kids and she could go back to be with her family. This will  probably be the last time she sees him because he did not want to be revived if the heart attack happened again. He is 91 and him and his wife live together in a community home since his leg was amputated a few years ago. Grandpa will be missed if his time has come, but he has left a legacy that is worth more than many lost treasures.

On February 19, 2010 just two years ago, my grandmother passed away. Before hers I had only been to one or two funerals in the last ten years. One person I did not know and one young man died in a tragic shipwreck. Since my grandma passed away I began to realize that I would be going to a few more funerals than I wanted to in the coming years including my 7 year old nephew who journeyed with cystic fibrosis. My wife's grandparents on her moms side are 90 and her grandma on her dads side is 90. My grandpa on my moms side is 82 but in good health and my only other grandpa is 90 and survived a heart attack last year. Just this last week I knew of 3 kids who were lost to cancer and counless more since I became aware last July.

It seems this guy is trying to befriend me like a stalker on facebook



I know death is a part of life, but it is not the only part. There is a definite beginning, middle and end.
In the beginning you are NOT born, you are conceived and you have life. Your heart beats within the first few weeks and you deserve a chance to breath. Thank you everyone who has ever told your doctors that you Will have this baby even if they only live a few moments. You have saved a life and you will be rewarded. Now that you have been born you go through childhood eating, drinking and playing. Mom, can you get me a drink?! (waaaaay after bedtime) Dad I'm hungry! (even thought I just left the dinner table, food untouched) I want to play outside (even though its raining and cold) Then there are the teenage years, lets not touch that one for now since I don't have any teens yet and I'm not looking forward to gas money being borrowed at $3 More a gallon than in my teenage years. Later there is going to college, getting a job and stress. Marriage and little ones follow with great joy and hopes that they would do everything you never got to do, or get to do, like take a long nap. After 18 years or so you look toward retirement and spending a good 20 years doing something for yourself. Then when you turn 75 you realize that the end is coming very quickly and you don't want to be forgotten, so you spend as much time (and money) as you can on the grandkids. That's life and it seems as short as this paragraph sometimes, but there is something you can do before it comes to a close.

You can leave a Legacy that no one, not even death can touch. In fact, death must yeild to the legacy that you leave behind. No matter how old, or young you are, you are going to leave something behind that the world would miss out on had you never been born. Statistically you will influence at least 10,000 people directly in your life time but you may never know the true impact. Your life counts for something, even today IF you choose to live with purpose. Don't give up now, and don't worry about death because as my favorite Author of Life has written:

1 Corinthians 15:50-58
I declare to you, brothers and sisters, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Listen, I tell you a mystery: We will not all sleep, but we will all be changed—in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: "Death has been swallowed up in victory."
"Where, O death, is your victory?
Where, O death, is your sting?"

The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ. Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

Sunday, February 19, 2012

Time for a 180

Now that the coffee is kicking in and the house is still quiet this morning, I have a chance to write and remember all that has been going on this week. As some of you know there where two things that made national news this week, but only most of you know one of the stories. Both of these stories involved drugs and death, which is something that attracts news media, but only one story was really noticed by the world because the drugs were too many and the death was too young. In comparison, only a handful of people remember the story of the many others suffering and lost because of the drug shortages. The celebrity that passed away this week will never be forgotten because of the amazing and wonderful talent she shared with the world, which is deserving, but for all of the children who are facing the life saving drug shortage crisis both now and in the near future, they will not make the national headlines or be remembered because they never had a chance to share their talents with the world.

I look at the world we live in today and wonder what it was like 50 years ago. Were people really this backwards where they let their kids suffer and die because they wanted to go see Elvis Presly or the Beatles? I'm not saying they do this directly, but when you think about how much money goes into the entertainment and sports industries vs. funding for research for the epidemic of life threatening diseases in our children, is there any way that you see this as moral or right? Would it be so bold of me to say that we are sacrificing our children so that we can afford the latest fashion or electronic device? Do you know that this trend has been going on throughout all of history? Back a few thousand years ago people did the most unmentionable things in the form of worship to please their gods. This is about as gorey as I can imagine, but they would create an image of their god and would fill it with fire and sacrifice their living children to it because their worship to their god was more important than life itself. Here is the image so you won't forget.
This is how backwards I see the world today and this needs to stop.

I love to listen to good music, watch amazing movies and see great sporting events, but these things don't interfere with my childs life saving treatments or raising awarness that kids need a life too. I just wish everyone would do their part and carve out some time in their lives to do something great instead of being so consumed with the their favorite tv show every night. People can make a difference if they really want to and you don't want to wait until something bad happens to be forced out of the lifestyle that your work and money has paid for.

Monday, February 13, 2012

The Ugly Truth

I have been reeling from the news that a certain drug that my son has been taking during his treatment is in short supply. Not only for him but for thousands of kids with cancer. The drug methotrexate is a common inexpensive drug that the drug companies decided to quit manufacturing because it is not profitable. We are talking about childrens lives here! I have posted as much as I can find on my page http://www.facebook.com/pages/Speak-Up-to-Silence-Cancer/272558346126344/ where you can help us fight for these kids and my son. I have been fighting like mad since my son was diagnosed and now its getting ugly and we need your help. Make a choice today to be reminded daily that life is short, and kids with cancer deserve a chance to play another day.

Saturday, February 11, 2012

The Unsung Hero

As my mind wanders through the most challenging days of life, I look for quiet moments that I can reflect on the blessing that surround my family and I. Tonight I thought of one such blessing that I keep so close to my heart. Since July 1st, Lincoln's Dx day and the day after our 10th anniversary, my wife Jenny has been the unsung hero in our family. From the moment she wakes up in the morning until its time for bedtime stories and prayers, she puts on her mommy uniform and prepares to serve her family. In the last 7 months Jenny has learned to adapt to a whole new world of medical needs for our son from Dr. appointments and schedueling daily meds to hospital stays and emergencies room visits. This on top of working at her job of 8 years, keeping Emma up on homework and church activities and finding just the right amount of time for herself.

Jenny has such a great capacity for being a mother that she still has the ability to inspire others in the middle of her own struggles. She started a blog of her own http://inspiredinfive.blogspot.com/ that you need to read every day. She will amaze you and compel you to be a better person even if you are at the end of your rope. That is why I love here and I am proud to call her my wife. I hope you get to meet her someday.

Sunday, February 5, 2012

The Underdogs

After watching the Superbowl today I realized something that no one likes. When you pick a team and you put your heart and faith into that team to win for you then you don't want to lose. The worst part is when your team does lose and you become disappointed, you find other people rubbing it in saying how bad you lost. My favorite team lost in the playoffs to the team that would end up as the champions tonight, so I picked the Giants even thought they beat my team. I don't want to be the one to rub it in to my friends who like the Patriots because I'm not really a big Giants fan anyways, but here is something I want to relate this to. When you are faced with a life threatening diseases such as cancer, you are always going to be the underdog. You will fight will all that you have, but you already know that you are playing a game against a proven champion who has won to many times. I try to avoid being a bandwagon fan because you can often miss out out some of the great victories like Tim Tebow's first playoff game. Tonight as you celebrate or mourn, please remember our kids fighting cancer and give them all of your heart and soul even thought there will often be defeat.

Saturday, February 4, 2012

Isn't it Time for Change?

I had a lot of down time this winter but a lot of time to think about the last 7 months since Lincoln was diagnosed with leukemia. Now that I am working full time again and soon I will be working a lot of overtime, I will not have as much opportunity to do what I wish I could be doing, helping our kids fighting cancer. It doesn't meant I won't give up but the time and energy I have will be put into my work and my family with my seasonal job. In the last 7 months I have noticed though that I don't do as many things as I use to do. I rarely watch TV except football on sundays and I have not even played video games as much. It seems I have a new favorite thing to do following the stories of kids and their families who are on this journey too.

I know that I am a different person now and I cannot make anyone feel the same way I do about kids with cancer since my own son has been diagnosed, but here is what I will be able to do. As long as I have breath, no matter what is going on, good or bad with my son, I will not go back to the person I once was. We have all seen the pictures of starving kids in places like Africa and turned a blind eye because it is a reality so far from home. Now that I know some facts about cancer and I know how deadly it can be in our own homes, I am compelled to do something. I can't just go out and discover a cure by myself, but I can come home every night, spend time with my family and then skip the news and entertainment that has sucked the life out of me for so many years and make a difference in this world right from my own computer. Some people see facebook as a waste of time, and I couldn't agree more with those people who say it because of the circle of friends that suck the life out of them, but I see facebook, youtube and all sorts of social media as a lifeline for families suffering from their diagnosis. It is a tool that needs to be used as a tool, otherwise your just a kid running with scissors with the risk of being harmed.

Today on World Cancer Day I hope people will Stand Up, Speak Up and cause a tidal wave of awarness that will change people's ways of thinking as cancer has changed mine. There are kids dying right now because we have failed as a country to challenge ourselves until we ourselves are challenged with the suffering or death of our own kids. All you have to do today is turn the TV off and take a look into the world that cancer has created by clicking on any of my links on my blog. I keep adding more websites that are actually funding the fight and researching ways to cure cancer in kids. Life is to short to be entertained with all of the drama that is so useless, but to be concerned about people fighting for their lives, now that is a worthy cause. I challenge you this week to give up watching the Bachelor, Grey's Anatomy, American Idol or just the news and spend time thinking for yourself on how you can help save lives. Don't let 2012 pass without knowing you made a difference in the life of someone with cancer.

Let me leave you with something I made up this last year:

Challenge youself
Hope is your guide
Ask for it daily
Never give up
God is on your side
Expect Results

Isn't it time for Change?