Riding for Roses

All day on June 10, there will be lemonade stands at Chick-fil-A locations throughout Austin. Read the Alex’s Lemonade Stand event calendar for June 10, 2006 to get the full list of locations in Austin (conveniently at the top of the page) and all over the nation.

Alexandra “Alex” Scott was a four year old cancer patient in 2000, when she started her lemonade stand to raise money to help doctors find a cure for cancer. Alex passed away in August of 2004, but her lemonade stand lives on all over the nation. Proceeds go primarily to support pediatric cancer research. Spencer will be dropping by the I-35/Parmer location over lunchtime.

So join in tomorrow by fighting childhood cancer, one cup at a time at an Austin Chick-fil-A.

The LAF Manifesto video is released in a small Flash version. There is also a large version of the LAF Manifesto video that you can load directly. Both versions have compression too high (and quality a little too low) for my taste. I’m asking around to see if there will be higher quality versions online.

I wrote earlier on the inspiring experience of making the LAF Manifesto video when Spencer and I had the chance some of the filming that led to this video.

Tonight at 7:30pm you can attend the opening of Blackpool & Parrish at Live Oak Unitarian Universalist Church at 3315 El Salido Pkwy; Cedar Park, TX and donating half the proceeds to the Lance Armstrong Foundation in support of Spencer. You can also donate directly to the LAF and support Spencer.

Come to Opening Night for the play Blackpool & Parrish featuring Live Oak’s talented Unicorn Players. Under the direction of Jon Porter, their distinguished, talented and hard working director, these talented thespians have labored hard and long to put on a very impressive production.

Preceding Opening Night for Blackpool & Parrish will be a reception for the Live Oak Photo Gallery’s new presentation, featuring photographs from the UU Photo Retreat, the Fall Conference Photo Workshop and submissions by other local UU photographers. After exhibiting at Live OakUU, the show will go on the road to other Texas Unitarian Universalist churches. Come at 7 PM and meet the artists and view the showing.

We are all busy and advocacy can be hard work. So, let’s make it simple. Visit the Lance Armstrong Foundations Take Action Now page and send two quick faxes or emails to your Senators and Representative asking them to support cancer research and survivorship issues.

It is easy. It takes five minutes if you take the time to customize. While you are there, sign up to join the LAF advocacy team and receive their (occasional) email newsletters on future advocacy issues.

It’s time for our nation to address our issues. Together, we can help change things for the better. As a team, we can make a difference for survivors.” – Lance Armstrong

Today is Livestrong Day – a day to celebrate cancer survivorship and take a moment to advocate for change. I’ll be posting several times today with simple actions you can take today to help fight cancer. I will describe what I am doing today and how you can join me in the fight against cancer.

Why do we need strong advocacy in the fight against cancer?

• in 2005, it is estimated (final numbers are not yet available) that 1,500 Americans died every day from cancer.
• the 2006 United States Budget reduced funding for the National Cancer Institute by $31 million.
• the five year survival rate for young adults with cancer has not improved in thirty years.
• the proposed 2007 United States Budget further reduces NCI funding by $40 million.
• in 1960, the overall five year survival rate for pediatric cancer was 4%, today it is 80%.
• Three out of every four families in the United States will have at least one family member diagnosed with cancer.

Think about the numbers. Think about the loss. Think about the opportunity. Join me today in fighting cancer. Come back here later. While you are waiting, make a small donation to fight cancer and support my six year old son, Spencer, who is riding 40 miles with me again this fall to raise money for the Lance Armstrong Foundation.

The Unicorn Players of Live Oak Unitarian Universalist Church are presenting “Blackpool & Parrish”, a play by David Belke this month at Live Oak Unitarian Universalist Church at 3315 El Salido Pkwy; Cedar Park, TX and donating half the proceeds to the Lance Armstrong Foundation in support of Spencer. Tickets $10 at the door or call the church for more information. Please come out to see this play by a wonderful local theatre group. Spencer and I will be at the May 20 performance as ushers.

bq.Harry Blackpool is the representative of all that is Evil on the planet Earth. Rachel Parrish represents the Good. After two thousand years of rivalry they are ready to pass their roles to their children. With the Apocalypse due tomorrow at tea time, is there any way to save the world? And doesn’t humanity get any say in the matter?

The play will be presented four times:

• May 19, 7:30 PM
• May 20, 7:30 PM
• May 26, 7:30 PM
• May 28, 1:30 PM matinee

Fighting cancer is hard. It is many diseases. It requires many cures. The cures have side effects ranging from annoying to awful. How can we fight such a multi-headed beast? Start with some simple steps:

1. Join what Austin Murphy calls Amstrong’s Army of cancer advocates. This is the online registration to be involved in the Lance Armstrong Foundation’s advocacy actions.
2. Donate to the Lance Armstrong Foundation and support Spencer in the Livestrong Challenge Ride. We are riding 40 (70 if Spencer can convince me) miles to fight cancer on October 8, 2006. Spencer wants to raise $15,000 or more to support the LAF.

They are simple, concrete steps. You can do them right now. If you do not like donating online, you can download a form and mail it. If you do not want to donate, please sign up for the advocacy group. It will give you the opportunity to remain aware of national issues and the chance to advocate for funding and support in the fight against cancer.

Spencer with Lance Armstrong in Sports Illustrated

The phone rings on April 18. Austin Murphy is writing the story about Lance and wants to talk about the Sports Illustrated cover photo. Spencer is home sick and is happy to talk with Austin – as long as I leave the room while they are on the phone together. Austin is looking for a little information about what was going through Spencer’s mind during the shoot when the photographer was asking the survivors to show their cancer experience in their eyes. Austin is either curious or forgiving of my desire to share Spencer’s story. Before I know it, we have talked for almost half an hour.

Spencer takes his turn. I leave the room. I’ll never know all of what he said, but clearly part of it was about hating all the shots and needle pokes. I hear the cordless phone beep that it is running low on battery and I bring in the spare. As I walk into the family room, Spencer says “hold on”, puts down the phone, and starts to do push ups. I turn on the backup phone and finish the call with Austin, but not before reporting that Spencer did 35 pushups¹. Apparently they were talking about what Spencer does in his Tukong martial arts class and Austin asked how many pushups Spencer could do. I tell Austin how Spencer started back at martial arts class when he was still not always able to walk from his bedroom to the kitchen and how Master Ali Brown gave Spencer private lessons to help him regain strength until Spencer was able to fully participate again in the group class.

Austin Murphy’s article The Next Stage is available on the Sports Illustrated web site. Here’s a taste of what he has to say:

Spencer is a foot soldier in what could be called Armstrong’s Army, a generation of cancer patients who are the opposite of passive victims. They are, like him, warrior-survivors. If he walked away from the fight today, that would be his legacy. But he isn’t walking away. He’s just getting warmed up.

As always, talking with someone about cancer survivorship is rewarding and fun. Remembering the good times reminds me of the happiness. Remembering the hard times reminds me of hope, but I also remember that we have it easy compared to many. Cancer is hard. It is, as Lance says, one tough hombre.

If you have a cancer story, please share it here or at the LAF Share Your Story web site.

Soon, I’ll formally announce Spencer’s effort to raise money this year for the LAF. He wants to help cancer survivors and defeat cancer – and maybe get to spend a killer weekend with supporters, cancer survivors, and Lance.

¹ Austin, if you are reading this: Spencer was unsatisfied with that number and did 50 later in the day just to prove it.

In April, the Rolodex effect snowballed.

KLRU filmed Spencer’s rock climbing class, a visit to the oncologist, and came by the house to interview us (Spencer, Rachel, and me). Spencer banished Rachel and me to our bedroom (with his brother Jacob) while he was interviewed so that he would be able to speak without being self-conscious. I was completely unfair to Rachel. She went first, so she got all the mechanical questions about diagnosis and treatment. That inevitably starts to sound a little self pitying. I went second, so my focus was more on recent events and positive things. It may come off sounding like Rachel is a pessimist and I am an optimist, but that is not the full story. I think in the end, all of us are taking away the positive as well as the negative from Spencer’s cancer. I find myself pleasantly surprised to say that the positive is currently winning.

Tuesday, April 4, Jacob was sick with what turned out to be an asthma attack, though we did not fully figure that out until last week. Jacob and I were headed out the door to get Spencer at school when my cell phone rang. It was someone from the LAF calling. She told me they had an urgent need to get a bunch of cancer survivors together for a photo shoot with Lance the following afternoon. It seems Sports Illustrated was planning a big article on Lance’s plans after retiring from cycling and they wanted a photo (possibly for the cover) with Lance and some cancer survivors.

While we at the photo shoot, we talked to some people from Alpheus Media about participating in shooting for a new video for the Livestrong Gala to be held in Austin on May 19. I wrote about the flow of images and emotions from reading the LAF Manifesto earlier. It was an intense and positive emotional experience. Spencer was also in a sequence they were calling “Chemo Kids” shot the same day we did the interviews with KLRU.

At this point, I assumed Spencer’s little media explosion had peaked and we would head back to normal life. Then the phone rang again….

Never discount the Rolodex Effect.

It turns out there are at least two feedback cycles. One is that, being in the media makes you worth covering. The other (stronger I believe) is that Spencer (and I, his publicist) wound up in the rolodexes of several people at Children’s Hospital of Austin and the Lance Armstrong Foundation as being willing to talk to media and at least tolerably photogenic. As a result of the Rolodex Effect, I received a couple of phone calls early in the year.

One call was asking me to participate in St. Baldrick’s in Austin. St Baldrick’s is an event where people shave their heads to raise money for pediatric cancer research. As soon as Spencer heard about it, he challenged me to see who could raise more money. He kicked my butt. Then he shaved my head before a professional shaved his. The St. Baldrick’s web site has an article about Spencer shaving his head for charity that includes a pointer to the KEYE News Story about St. Baldrick’s here in Austin.

The other call was asking us if we would be willing to be taped and interviewed by KLRU, Austin’s PBS station, to do an episode of their Austin Now news magazine. They will be airing an episode in June covering pediatric cancer as a tie-in to the airing of Lion in the House – a compelling documentary on pediatric cancer that follows several patients from the moment of diagnosis. KLRU dropped by the St. Baldrick’s event and shot some B roll in preparation for more to be done in April.

Come back soon for step 5 – our busy April.