Mission Moment Monday: Coach Bill Crews

Bill Crews has been involved with Team In Training since May 2004 as honored teammate, fundraising participant, marathon coach and triathlon coach. He was diagnosed with incurable non-Hodgkin lymphoma in October 2003 and has shared his story many times at many TNT events. The following is part of a speech he gave at an inspiration dinner in January 2013...

The dictionary definition of "hero" is: someone of distinguished courage or ability, admired for his brave deeds and noble qualities.

Over the past several months a lot of people have asked me to talk about my feelings about Lance Armstrong. My typical answer is that I'm grateful for any good he's done for the cancer community and then I change the subject. Some people have even said, "what has happened to Lance is tragic because the cancer community has lost its great hero." What I'm about to say to you has nothing to do with Lance, but everything to do with the lie that the cancer community had only one great hero and no longer does.

If a hero truly is someone with distinguished courage or ability, admired for brave deeds and noble qualities, well then the cancer community remains full of heroes, some alive and well, and others fallen.

My sister Michelle became a hero in my eyes when she was only 5 years old. I will never forget the moment my parents told me she had leukemia. I was 7 years old and scared. But I watched her courageously endure chemotherapy and radiation. I saw her laugh and smile when she was in pain and proudly pull off her wig in front of everyone to jump into the pool to swim with me. Michelle was my best friend.

For a year, I saw a true hero in her as leukemia ate away her life. On the last day of second grade, I went home from school to hear the devastating words that changed my life forever: "your sister died today." One year after her diagnosis, my sister became another victim of blood cancer. In my eyes, Michelle Crews is a fallen hero. She's not out living strong. She never had the chance to run a marathon or become an Ironman. She never had the chance to even finish kindergarten. But she was one of the greatest heroes of my life.

Recently I read an article about teenagers with cancer. They wrote about how they feel about their disease. Kids are so honest. They don't feel the need to put a spin on cancer. They just tell it like they see it. One of the girls said how she just wishes she could go to P.E. class and hang out with her friends, all the normal stuff she's missing out on. Every one of them said they just wanted to go back to the normal stuff, not that they wanted to be some great hero doing big extraordinary things, just the ordinary things all the other teens take for granted. But the quote that stood out the most to me came from a 14-year-old boy. He said, "Cancer has messed up my life. There's no getting round it. People say I'm inspiring and strong. I hate that. I'm no superhero, just a boy who wants to stay alive doing what the doctors and nurses tell him in the hope of one day getting his life back."

This got to me more than anything else because it's how I feel too. My photo is in magazines and on posters at MD Anderson. In it, I stand next to my bike with the word "lymphoma" crossed out and the caption talks about my triathlons and marathons. I'm told that my story of beating cancer and becoming an Ironman inspires people to pursue their dreams. The simple truth is I'm not a hero for having cancer. I was just a 37-year-old man who felt just like that 14-year-old. Cancer messed up my life. My hope was that the drugs would do their job of getting rid of my cancer so I could go back out and live again.

My hero is Dr. Rick Hagemeister, the man who saved my life. His decision to use RCHOP chemotherapy was the reason I'm alive today. It's not because I did anything great. I was lucky. The drugs worked for me. My sister was unlucky because they did not work for her. Does the fact that she died make her less of a hero? Does it mean she wasn't brave or strong or filled with courage? No. It means that the drugs did not work for her. Strength and courage do not save your life. Maybe, if you're lucky, the chemo works. That's why we need more funding for research. Cancer research saves lives. Oncologists, nurses, researchers... they are the heroes. They are the ones who have devoted their lives to the eradication of cancer. But without funding for research, they can't do their job.

That makes everyone in this room tonight a hero too. You have raised thousands of dollars for research and someday more and more people will survive cancer because of you.

Update:

Eleven years after Bill's battles against cancer began, they have heated up again. October 2014 brought the devastating news that he has developed a secondary cancer and must continue the good fight. On behalf of Bill and the many thousands of men, women and children enduring blood cancer, may we continue raising funds for our researchers so that someday soon we can all see the end of blood cancer.

Mission Moment Monday: Running For Dad

Sarah Bannon is a 28-year-old life long Houstonian. She is a genetic counselor at The University of Texas MD Anderson Cancer Center, specializing in gastrointestinal cancers (colon and pancreas) and blood cancer (leukemias and myelofibrosis). On the side, she's also a professional singer you can find singing at places such as St. Paul's United Methodist Church, local choirs, recitals and Opera in the Heights.

Sarah is training with our Memorial Park group for the Aramco Houston Half Marathon. It is not her first half marathon, but this one is taking on special meaning. Here's her story...

"I ran my first half marathon last year on accident. I was never supposed to actually get picked in the lottery! And it was the biggest personal challenge I have ever tackled. It was about a month later that my father was diagnosed with acute lymphoblastic leukemia (ALL) in February 2014, which turned my entire world upside down.

Being by his side through the long wait for a diagnosis, the fear and the uncertainty of those weeks he was in the protected environment, and the deep pride and love I feel as he goes into his last cycle of consolidation therapy next week have brought us so close together. I knew that I wanted to keep running after my first half and it was a complete no-brainer that I would do my next one with Team In Training. Every single step is for my dad- his bravery, his sense of humor, and in gratitude for the time we've had together and all the time that is to come. I am so excited to be running, not just for my dad, but for my patients and their families. Leukemia used to just be my job, but now it's part of my life."

LLS Staff at MD Anderson Cancer Center

 

Texas Gulf Coast LLS staff outside the research facility at
The University of Texas MD Anderson Cancer Center

September 15 was "World Lymphoma Awareness Day" and the Texas Gulf Coast chapter of LLS was privileged to spend this special day touring one of the research facilities at The University of Texas MD Anderson Cancer Center.

 

This was a wonderful opportunity for the staff to get to witness first hand some of the exciting developments in research our organization is helping to fund. The site visit began with a tour through the labs of Dr. Larry Kwak, head of the department of lymphoma/myeloma and Dr. Robert Orlowski of lymphoma/myeloma. Researchers in the labs talked to us about some of the incredible advances in therapies they continue to work on, including cell therapy, vaccines and targeted antibodies.

 

Our next stop was a visit with the director of the Lymphoma Tissue bank, Dr. Sattva Neelapu. He and his head researcher took us into the labs where they store tumor tissue and study tumor progression. Part of the lab includes a room filled with large freezers where the tissue is stored at -180 degrees.

 

Following lunch, Dr. Dean Lee of the Graduate School of Biomedical Sciences talked to us about the cutting edge research he's doing inserting NK cells into a patient on chemotherapy. NK cells (natural killer cells) are one of the specialized white blood cells of our immune system and they can recognize and kill many types of cancer, including AML. Recently the FDA and review board at MD Anderson approved the first in-human study to test whether these NK cells can be safely delivered in combination with chemo. This clinical study is happening now and we are honored that the LLS has given a grant to Dr. Lee for this remarkable study. If successful, the approach could apply to many other types of cancer. There are already other clinical trials under development to test NK cells.

 

It was a great thrill to visit the famous MD Anderson Cancer Center and we feel grateful to be here in Houston where this incredible research is happening in our own back yard.

 

Researcher at the Lymphoma Tissue bank
showing us the freezers filled with tissue from
biopsies. The freezers are kept at -180 degrees.

LLS staff at the tissue bank with the lab's director, Dr. Sattva Neelapu

Staff with Dr. Dean Lee, M.D., PHD- faculty Graduate School
of Biomedical Sciences

 

Mission Moment Monday: Peyton's Story

Eleven-year-old Peyton Busch is a smart, athletic 5th grader who loves football and basketball and playing outside with his brother Braden.

On September 11, 2006, at the age of 3, he was diagnosed with leukemia. His mom, Carrie, had noticed many red spots on his arms and legs as wells as a lot of bruising and she just did not feel right about it. So, Peyton's pediatrician did blood work. Once the blood work came back, the pediatrician said he thought Peyton probably had leukemia and that they needed to leave immediately, pack a bag, and head straight to Texas Children's Hospital.

"My mind did this... Leukemia = Cancer = Death," Carrie said, "I had no idea this was a blood cancer. I had no idea what the statistics were for survival. I had no idea what it meant that he was considered high risk. I went home crying with him and packed our bags."

Peyton's dad was on a plane coming home and had no idea all of this was happening until he landed and found out his wife and son were at the hospital where his little boy was already having blood and platelet transfusions.

"In the beginning the treatments were horrible," Carrie said, "For the first year and a half, I had to hold Peyton down to get his port accessed. He would kick and scream and hit me and cry and ask why I was letting them do this to him." He cried when they took the dressings off his port when he finished chemo. He spit the oral medicines at his mom saying they tasted "yucky" so she tried hiding them in his food. Finally, the nurses taught him how to swallow pills so they could get the medicines in without a fight.

In January 2010, after four years of chemotherapy, Peyton was done! His port was removed one week following his seventh birthday. Today, he doesn't really talk much about his cancer journey. He just lives a normal young boy's life. He has minor issues with his heart from the damage done by treatments, but fortunately, he is cancer free and now only has to return to TCH once a year!

Carrie has gone on to participate in many events with TNT. She runs, swims, bikes and raises thousands of dollars to fund a cure for leukemia so that someday young mothers won't have to endure the painful experience of having a child with cancer. "I felt when I became a mother I finally had a purpose in my life- to raise and protect my children to the best of my ability," she said, "When Peyton was diagnosed, I lost the ability to protect him. I had no control over what the outcome was to be or how the treatment was to go. I had to turn it over to God and let Him take care of Peyton."

"I was just there to delegate the obnoxious pill schedule and to stay on top of his treatment schedule. And try to make things as normal as I could for Peyton, Braden, and myself. That was really hard."

There are many young parents every day who discover the same horrible fact Carrie did, that their child has cancer.  "I would tell someone whose child has been diagnosed that it is going to be a long hard road, but that there is so much good that comes out of something so bad. I have met other great families through our journey that truly understand my fears and concerns and emotions. I have my TNT family."

Carrie's continued support of the mission of the LLS through TNT is phenomenal. She proudly wears her son's name on her race jersey and continues to fight not only for Peyton, but for other men, women and children with blood cancer. "I want this disease to go away," she said, "I never want another family to hear those words: 'your child has leukemia'. I think the world needs to know how little funding goes to childhood cancer research. There needs to be more so they can find a cure and better treatment methods for little ones."

Nations Tri Weekend in D.C.

Our Nations Tri TNT triathletes spent the past weekend in Washington D.C. biking and running to beat blood cancer. They would have done a little swimming for the cause, but a storm came through the night before causing a little nastiness to be stirred up in the Potomac.

 

But our fearless purple warriors did not let this spoil their enthusiasm for ending blood cancer. Our local team raised over $38,000. And our Team Andy Strong Tri group was the top fundraising team at the event. Participants from many states attended the event and raised more than $500,000 to wipe out blood cancer.

 

Go TEAM!!!

 



Is Your State Represented?

So far, 8 great states are represented on our Winter Season roster. Participants are coming in from Arizona, Colorado, Connecticut, Illinois, Massachusetts, Michigan, and Pennsylvania. And of course, loads of Texans will be here.

It will be fun having so many out of state guests at our Inspiration Dinner and race on January 18. We can't wait to see y'all!

National Blood Cancer Awareness Month

September is National Blood Cancer Awareness Month.

• Every 3 minutes someone is diagnosed with a blood cancer.
• 1.1 million Americans are living with (or are in remission from) a blood cancer.
• Blood cancers are the most common of childhood cancers.
• Almost 150,000 Americans will be diagnosed with blood cancer this year.

The Leukemia & Lymphoma Society is working harder than ever to fund cures for these diseases and to make sure that patients have access to the treatments they need. During Blood Cancer Awareness Month, please consider helping us on our mission to raise $300,000 in 30 days!

Since we began in 1949, we have invested more than $1 billion in our mission to cure leukemia, lymphoma, Hodgkin Disease and myeloma and to improve the quality of life of patients and their families.

Thank you Texas Gulf Coast TNT participants for your part in this great mission.

Go TEAM.