Sunday, June 28, 2009

The King of Pop

The King of Pop is dead. You can not miss it. It is all over the news. The New York Times and The National Enquire carry the same headline. It's the opening stories on CNN and Saturday Night Live. I guess it only stands to reason. He was big. He was the King. Everyone wants more information, and the media is there to serve our desires. Remember, the media exists by selling advertising space, and the more we watch, listen and read, the more they charge for advertising. If Michael Jackson and all his fanfare is what we want, than Michael Jackson is what we'll get. He' part of our lives, because we all grew up with him (although I recall spending more teenage years thinking about Farrah Faucett than Michael Jackson).

He is big. But as I watch the news, I wonder about the stories that do not get attention. The stories that are quiet, with no fanfare of commotion. The ones that will not sell enough advertising dollars to attract the big media outlets. I would to share a few of those stories.

Brett Workman had Burkitt's Lymphoma. He still wanted to fight, but the doctors and insurance companies did not. Although there were more options, he was sent home with hospice. The last time I saw him alive, being taken off the cancer floor, he lifted his head and said to the nurse, "Thank you for all you tried to do to save me. Thank you very much".

AJ Pinewski had Burkitt's Lymphoma. The Make-A-Wish Foundation granted his wish for a ski trip. But due to complications, the trip was canceled. As AJ saw how things were going with his treatments, he contacted the foundation and changed his wish. Diamond necklaces for his mother and sister, wrapped around a stuffed bear. His wish was to give them a gift. The gifts arrived the day after AJ passed away. Then, not many weeks after losing his son to Burkitt's, AJ's dad and aunt Connie walked into MD Anderson to sit and encourage Tyler and I as we battled the same cancer. A true friend.

Ryan Salmons had his world turned upside down with the news of cancer. But over the course of of the next year, I saw an him transform into a young man of incredible strength and determination in his fight to beat cancer. And then I saw his courage, as another relapse ended his medical struggles, and he choose to live his last month on his own terms.

Joe Friend beat cancer and left Children's just before we arrived. Cancer had taken his leg, but never his joy and enthusiasm. Then, just as Tyler was going into remission, we heard Joe was getting married. But just before the wedding, Joe relapsed. Now, with his bride by his side, he is back into the a war he thought he had won. And his smile never ends.

Seth Harris had Leukemia. He beat it, but it returned. He never faltered as he endured incredible side effects from the chemo. Then the liver disease set in. An experimental drug existed that could save him. Thousands rallied to his support. But hospital and insurance politics used their bureaucracy to stall the expensive treatment. Seth passed away as life saving treatments were withheld.

Jake Silberg had Burkitt's Lymphoma. One day, as he was fighting for his life, he stood on his bed and wrote on the ceiling a message we would see whenever he opened his eyes, "Every day is a gift. Everyday holds the hope of changing the world. Everyday is a chance to make life AWESOME!" Jake is now in remission and currently touring Italy, courtesy of The Make-A-Wish Foundation.

Zac Mason was diagnosed with Leukemia last summer. He beat it, but relapsed in February. And relapsed again in April. They have dumped almost every type of chemo into his body, and are now just mixing up the chemos in different ways. Still, he continued to fight. Every single day.

Rachael Tippie beat Leukemia, but it came back. Doctors said it could not be fought again. They were very sorry, but it was time to die. But her family said no. So they backed her up and found a doctor willing to fight. Given the opportunity, Rachael began to improve. She is now doing great, and is about to be released to the Ronald McDonald House as she waits for her bone marrow transplant.

Mason McLeod has Burkitt's. He has been written off before, but continues to fight. Then his insurance company turned on him, refusing to pay for necessary treatments. But family and friends rallied, and forced a reversal of the decision. Mason continues fight as he waits for his bone marrow transplant.

Matthew Barr beat Leukemia. Then, as his family was leaving for their Make-A-Wish trip to Disney, the cancer returned. But Matthew stands strong, as he perseveres so many unknowns. Unfortunately, insurance companies do not always have the same perseverance. The family has been told they have reached the life time cap in insurance. They are on their own.They are having a Golf Classic Fundraiser July 10th.

Mason Woods had Leukemia. He fought a very long and difficult battle. Mason never wavered. He never quit. But slowly it became clear that the current medical technology is not sufficient to save his life. But I think, on some level, he understood more than most of us. Not long after Mason passed away, his father found a drawing Mason had left for him. It was a drawing of a large smiling Mason, with angel wings, watching over his father.

Justin Hutchins has been fighting brain cancer for two years. All known medical options are gone. So his family fights with him at home. Hospice was offered, but felt too much like a nursing home. How do to send your 13 year old son to a nursing home? So they stay home. They hug and cry and laugh. They bath and feed. They love. And they wait.

Josh Prunsky fought a long battle with cancer. But through his fight, his primary concern was about his mother and all she was doing as a single parent of a child with cancer. His requests for prayers we always about her. Then he relapsed again. In one of his last updates before passing away, Josh asked for prayers that the doctors would find answers, saying, "I do not want my mom to be alone."

I could go on for hours. Chase Donnell, Cameron Brown, Christian Barker, Trey Martins, Sinjin Andrukates, Tristan Saputo, Nicholas Timbrook, Matt Hupp, Olivia Mallott, Kylee Bornhourst, Alex Pothast, Brayden Bueter, Olivia Lanwasser, Robbie Kemp, Jana Stonecker, and so many more.

I guess these stories are not big enough for the headlines. They don't sell ads. They don't shout and scream. They are not full of noise and fanfare, glitz and glitter. They are just young people fighting a horrible disease. We shout about the celebrities, while these kids get just a whisper.

During one of the many sleepless nights in the hospital, I was roaming the halls at 3 in the morning. I stopped in the family lounge and saw an open Bible on the table. I sat down and read the passage that was marked. It was about Elijah looking for God. He had looked inside a powerful tornado tearing through the mountain, but God was not there. Then he saw a giant wall of fire, but God was not there. Then came an earthquake that tore the earth apart, but God was not there. Finally all the noise stopped, and a gentle breeze began to blow. In the breeze, Elijah heard a quiet whisper. And in the whisper, he found God.

I do not mean to belittle celebrities. I assume they're very nice people. But this I know for a fact. It has been my honor and privilege to get to know these courageous children with cancer. The media might consider their stories just a whisper. But in their whisper, I believe that I have found God.


Mama Joe said...

thank you.

Anonymous said...


Lynne Mandel said...

Kyle, I've followed Tyler's story for quite some time but this is the first time I'm writing. You may know my sister, Teri Hinckley...I was just watching Dateline (June 28th) and thought of you. They are featuring a story of parents who fought the government and the FDA to get a drug for their dying children - and won! Parents that are fighting to win for their children! I'm sure you can check out the story online. Prayers continue in gratitude for Tyler's healing and for so many other of the children as they fight to win!

Lynne in Pittsburgh

Cheryl Williams said...

Kyle - I too have followed your blog for quite sometime and love the emotion and honest caring you have for not only your son but for all the children.
This post and the post about cancer being a family fight are so very touching, as I sit here at my desk with tears streaming down my face. I am Joe Friend's aunt so I understand the pain and frustration of this disease for everyone.
Thank you for keeping the attention on the fight - the fight we are all fighting to win.

Cheryl Williams

Anonymous said...

Thank you for fighting for our children.

Anonymous said...

The difference is that MJ was not a hero - these kids are! MJ had talent that took him down a wrong path - these kids had passion & it took them down a path that made them heros.

I did not have tears as I read about MJ, I did as I read about these kids. There is a BIG difference! Which would you rather be? A king of Pop, or a King of life? These boys are Kings of life - MJ never had the kind of courage they did.

Anonymous said...

Thank you recognizing these true heroes. Their courage and attitude as they fight on is inspiring.

Anonymous said...

What a beautiful gift from God you are......

Anonymous said...

I'm an adult, but I also was diagnosed with burkitt's Lymphoma, and had a long battle to beat. Your stories about the children were very touching, and I commend you for telling their stories. Im glad tyler is doing well, just shows you that cancer can be beaten.