14 February 2011

The Cause of My Life

When my wife was diagnosed with breast cancer eight weeks ago, at the age of 36 and with four kids, the youngest of whom was 4 months old, it was what one might call a shock, the like of which you don't get too many times in a lifetime. It was a life-altering moment. As we walked out of the hospital, numb, one thing was clear, above all else:

This Changes Everything
There were so many decisions to be made. What would we do about the kids? About my work? Karate? PTA? The kids' music classes? Nothing could be taken for granted. Every little detail in our lives was about to be radically altered in the service of working up and treating Liza's cancer. Nothing would be spared. No detail was too trivial not to be affected by the monolith of living with cancer. I played out the game in my head, and I ran the calendar ahead and ran into a roadblock in March.
What was I going to do about St Baldrick's?
For those who do not know, I have participated in the St Baldrick's head-shaving event for the last three years (see here, here, and here). We raise money for pediatric cancer research. I do it in memory of my friend Nathan Gentry and a friend I never met, Henry Scheck. These kids died of cancer before they ever got to enjoy life. Their lives and their struggles changed me forever. But now we were embroiled in a struggle of our own, for the life of my wife, Liza.
So, am I on a "new team" now? Am I morally obligated to join the Susan G Komen foundation and wear a pink ribbon? It reminded me of an old Onion headline:
Rare Disease Nabs Big-Time Celebrity Spokesman
BALTIMORE–Flehner-Lathrop Syndrome Foundation officials excitedly announced Monday that actor Ted Danson has been diagnosed with the rare, deadly degenerative disease, bringing much-needed star power to their cause.
I was a fan of pediatric cancer, but I got drafted by breast cancer. (So that's what it feels like to become a Chicago Cub!) Is that how it works?
We've decided not. Note that I say "we," because this is as much Liza's position as mine. We do kids' cancer because it is important and because there is a gap there that needs to be filled. Just because some other disease has the temerity to come in and affect our lives directly does not mean that we will drop our priorities and put our provincial concerns in the top position. I knew about breast cancer (and colon cancer and heart disease and HIV and a host of other valuable causes) long before I decided to get involved in St Baldrick's. I chose pediatric cancer as the cause that I was going to dedicate my philanthropic efforts towards, not because it has directly affected me or mine, but because it's a critically important niche where I can make a difference, and because there is a real need for resources, in a way that is not true for other cancers, and also because the victims of pediatric cancers are vulnerable in a way that is unique. And that has not changed.
Please, understand that nothing I say or do here is intended to disparage those whose choices are other than mine. In fact, I suspect that for some, Liza's experience with breast cancer will inspire them to make breast cancer the cause of their lives -- and good for them! More people involved, more people fighting the fight is a good thing, and I welcome it strongly. Nor would I ever hint that "my cause is better than some others." That would be wrong and offensive in the extreme. All I am doing is explaining how I came to my own decisions.
Breast cancer is a useful comparison, because is has struck so close to home for me. For perspective, the Susan Komen Foundation is a $1.5 billion organization, with $337 million in annual revenues. The NIH spends some $900 million every year in research related to breast cancer. Which is as it should be: breast cancer will affect one out of every eight women. This is a lethal and common disease. It's absolutely great that there are people doing incredible work towards a cure for this disease, and I thank each and every one of you who has ever donated towards or worked for such a worthy goal.
In contrast, the funding towards all the cancers which affect children is a small fraction of that which is dedicated to breast cancer alone. The St Baldrick's Foundation had $22 million in revenue in 2010, and is the largest organization dedicated to pediatric cancer. St Jude's is another great organization, in the $100 million range, though they focus on all childhood catastrophic diseases, not just cancer. But the theme is clear: funding for kids' cancers lags an order of magnitude behind that of breast cancer, and other common adult malignancies. While this does make some sense, given their relative incidence, the fact that many kids' cancers have had such shocking decreases in mortality highlights the fact that dollars given to pediatric cancer research have a fairly high bang for the buck, so to speak.
So I'm still on "Team Baldricks" for 2011 and going forward. This is what I care about, and this is where I hope to make a difference. Because there are kids who need our help. And I'd like to ask for your support. Please take a moment and click through to my St Baldrick's page and make a secure, on-line donation. I've set an audacious goal for myself this year: $10,000. Whatever you can donate: $25 or $50 is the average donation, and it's greatly appreciated. If you can afford $500 or even $1,000, an angel will get its wings. Donations greater than $1,000 are rewarded with total consciousness, which is nice.
If it brings you more joy, click on Baldy the Leprechaun to donate:

Or, if it's more your thing, go on over to Susan Komen's place and make a donation in honor of Liza or the woman of your choice. It's all good.
Bonus: the top donor, if he or she is motivated to come to Seattle's Fado Irish Pub on March 10, 2011, will be awarded first swipe at my head with the razor! Any donors who show up, regardless of the level of support will be rewarded with a Guiness on me!

21 comments:

  1. I can't spare much, but I wanted to help this important cause. My heart goes out to you and your family. Good luck with your quest!

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  2. Really sorry to hear that. Please go and see "The Secret" movie, it will help to get rid of cancer.

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  3. Your continued support of this worthy cause is marvelous. I made something of a similar calculation when we lost Dad to cancer that was first detected as prostate cancer. And, I think it is wonderful that you and Liza agreed to stick with St. Baldrick's.

    You're a great guy; we are all lucky to have you.

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  4. I'll be making my annual donation as soon as I finish this comment. I'm keeping Liza in my prayers. I really admire your openness with how you made this decision. I haven't found the "cause" of my life yet, so I'm spreading the wealth so to speak. Peds cancer is high on my list, especially today. I'm a peds anesthesiologist and starting next week, I'll be going to our local cancer center on a daily basis to assist in treatments for a very young one.

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  5. Well said my friend, very well said. The support is very welcome indeed, and perhaps we can motivate others to become shavees and expand the philanthropic circle even further.

    Looking forward to sharing that Guiness with you.

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  6. An example to us all. Sending love and a little cash to you and both groups.

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  7. I just made a donation, wanted you to know who it is if you don't recognize the name. My first name is Tori. I had cancer a few years ago when I had just had my 4th baby and had just turned 30. Scary times. Please continue to be the amazing husband/supporter you seem to be. My husband couldn't deal with it all and we are now about to get a divorce. I know you will be there for your wife but wanted to remind you of that anyway.

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  8. I can't make it there to collect my Guiness in person, but I'll have one here on the East Coast!

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  9. Thank you, thank you, thank you! From a mom who had to say good-bye to her son too soon! Thank you!

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  10. Thank you!!!! My son passed away after a nine-year battle with a brain tumor on Mother's Day 2009. Last year, I shaved my head for the first time at a Fado's in Atlanta. Notice..I sad FIRST TIME! Yes, I will shave again in September as part of the 46 Mommas group in Washington DC. I cannot tell you how much it means to moms like me that you made an educated and heartfelt decision to support research into pediatric cancer and continue to supporting such a worthy endeavor. BLESS YOU!!!!

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  11. Excellent! I was diagnosed with ovarian cancer and then breast cancer. My advocacy remains with ovarian cancer as my efforts are needed more there.

    I would only say that your friends moved to do something in Liza's honor could also choose another breast cancer organization such as the Breast Cancer Research Foundation (http://www.bcrfcure.org/) or work locally, in their community, on programs that directly help cancer patients and their families regardless of "organ".

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  12. Traddie@hotmail.com2/18/2011 8:27 AM

    I want to commend you for having a cause. Childhood cancer is my cause as well, for selfish reasons. My child had Ewing's sarcoma of the left scapula with lung mets. 18 months after treatment he is still doing great. My husband shaved his head in our son, Trace's honor. I will continue to support breast cancer research and begin praying for your family. Thank you for your dedication!

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  13. Hope you are all doing as well as can be expected, and thank you for your thoughts.

    AJs Dad
    Co-Founder
    People Against Childhood Cancer (PAC2)

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  14. Thank you so very much for your work!! My daughter was diagnosed with AML last June and is thankfully in remission. We were very fortunate to have an experimental NK cell treatment at St. Jude in December. It is due to the hard work from caring folks like you that we were able to have this treatment. Thank you, thank you, thank you!!!! I will be praying for your wife and your family.

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  15. Thank you for your courage and heroic decision to continue to put the kids first. I can't begin to find the words to describe what a tremendous gift that is.

    So much gratitude,

    Amy Bucher
    mom of Arden (forever 3, one of the 5 2011 St. Baldrick's Ambassador kids), Grayson (4), and Zoey (15 months)

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  16. As the mother of one of this years 46 Mommas (Amy Brennfoerder) and the grandmother of Kaiden, I say thank you for your continued support of St Baldrick's. You,your wife and beautiful kids will be in our prayers. Cancer of any kind touches the whole family and friends unit.

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  17. Thank you!  You have eloquently said what I have been trying to explain since 2005.  A month after my 2 year old son completed cancer treatment at Seattle Children's my father died from non-Hodgkin's lymphoma.  While I support all cancer research, I feel compelled to fight for the underdog.  My heart, my bald head, and my time belong to St. Baldrick's.       

    I look forward to meeting you at the Seattle Fado event next month!

    Kelly Forebaugh 
    46 Mommas Shave for the Brave- Class of 2010

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  18. Thank you to you and Liza for this wonderful decision! As a twice survivor of breast cancer, myself, I am NO longer a supporter of Komen and never will be again! I am a 2010 46 Momma Shavee along with 45 other incredible ladies who. Did so for the kids. I will NOT waste another dime to an organization like Komen who blows our dollars donated on attorney's to attack and shut down other cancer organizations for using a word and a color! They are an absolute disgrace to me! I, personally, DO encourage everyone to pick your cause for the children rather than Komen! The donations are going to a gravely under funded set of diseases that so desperately needed and your donations WILL go for NEEDED research, not wasted on ignorant, arrogant, greedy actions!

    Thank you, to both of you! My son has lived with a rare leukemia since he was born. 11 years (12 in May) and has never known what a good day in life is! Something I wouldn't wish on anyone! On any child. What you're doing is incredible! You sure have this fanmilies gratitude! Our deepest of prayers are with you, Liza and your little ones during this time! God Bless you all!

    Lisa Gropp
    Mother to Derek

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  19. You and your wife are amazing! This post is a testament to what strong and incredibly caring people you are. You both continue to be in my thoughts!

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  20. Dr Movin' Meat (Love that name!)~
    Thank you, from the very depths of my soul, for sharing this perspective.
    As you know, funding pediatric cancer research has become a grass-roots effort, led by and fueled by parents of children diagnosed with cancer.
    The few, the brave, the aware souls that are not personally touched by pediatric cancer but still choose to participate in this world are our heroes.

    This post has gone viral on FB through the pediatric cancer community and St B's. Your words have made an impact.

    Will you marry me? *snicker*

    Grateful. Humbled. Thankful. Honored.
    Mindi Finch
    Momcologist & Team Leader 46 Mommas Shave For The Brave '11

    We are shaving in Washington, DC. Tuesday September 13, 2011. Union Station. National Childhood Cancer Awareness Day. Proudly representing the 46 families, every weekday, who hear the words we did: Your child has cancer.
    http://46mommas.com/

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