If you are wondering why I haven’t been posting. For a long time, it’s because:

• everything is going well


• I’ve been thinking of re-re-redefining this as being my blog again rather than Riding for Roses


• I started SpencerOne as a place for our cancer work

So, if you still visit here or have an RSS subscription, maybe you should keep it for when I rebrand the blog, but you should definitely go look at SpencerOne and consider adding it as well.

We’ve benefited from the LLS directly in the form of patient education and online resources. The LLS funds ongoing research which is critical in finding and improving treatments for different kinds of blood cancers. Spencer’s leukemia has an 85% five year survival rate thanks in part to the LLS, but leukemia treatment still needs to be improved. Education and patient support services from the LLS and others were critical in our first days after Spencer’s diagnosis. Being able to understand what was going on and what would happen were critical in managing his care.

My father died from multiple myeloma, an incurable blood cancer, in 1997. He never got to meet my sons. Improvements in treatment are resulting in longer life spans for multiple myeloma patients. More effort is needed.

According to the plan, Spencer and I are going to be on the JB and Sandy Show on the morning of Halloween, probably between 7:15 and 7:45. If you’re in Austin, tune in to 94.7 to listen, between 7 and 9 on October 31, 2007.

Thanks go to Robert and Jeffi (who is riding and raising money again for Team in Training) for their work with JB and for pointing JB at us.

Why am I voting to spend tax money on this? Federal expenditures on cancer research are decreasing for the first time since Nixon declared a war on cancer. Texas loses over $30B annually in direct and indirect expenses on cancer. More than 95,000 Texans will be diagnosed with cancer this year and over 37,000 Texans will die from cancer this year.

I’ve heard basically two different arguments against this proposition. One is we shouldn’t be spending tax money on cures that might make money for private companies. I believe the money saved in direct and indirect costs alone justifies this effort. Another argument is that approving a new cancer drug is prohibitively expensive and this initiative will “only” pay for about 2 new drugs. This assumes that the CPRI would absorb all of the costs of new drug approval. This should not be the case as a pharmaceutical company wishing to patent and sell a new drug should absorb the bulk of the cost. The CPRI should be funding research into causes, cures, and prevention.

You can find early voting locations in Travis County if you live there (as I do), or learn about where to find your Texas polling place from the Texas Secretary of State.

I hold you two, and the entire LAF, responsible for the attached photo. After Lance mentioned (again) “more wristbands than I’ve ever seen on one person” at the LIVESTRONG Challenge Austin pre-ride dinner, Spencer decided he had to one-up himself. He scoured the house for leftover wristbands. He talked the folks at the mission tent at the Challenge into giving him two sacks filled with wristbands with the plan that he will give them away. He talked me into buying 20 more youth wristbands at the Challenge store. He picked up half a dozen more at the oncologist when he was in for an IV immunoglobulin on Wednesday.

Today is Spencer’s three year diagnosis anniversary and he is wearing 80 wristbands to school. He has more in reserve to “load up” again after he gives them away. This afternoon, he will attempt his martial arts class while wearing all those wristbands. Tomorrow, he will go to swim class “loaded up”. Do wristbands float? Thursday, he will wear them to his Cub Scout pack meeting and continue to give them away.

He also put Challenge tattoos on his forehead and forearms, in gross violation of school dress code. He did leave the Challenge hat at home today (also against dress code), but will wear it later this week when they have a one day exemption from the no hat rule. I’ll probably get a phone call from the principal or something today.

I hold the two of you, and the entire LAF, responsible.

Thank you. Both of you. All of you at the LAF.

Regards,

Rob Sartin

Spencer is doing well overall, but we had some minor problems last week. Over Spring Break (which ended March 18), we had a fun trip to the Dallas/Fort Worth area where we hit science museum, zoo, aquarium, Boy Scout Museum, and the Bureau of Engraving and Printing. Spencer was coughing a fair amount. Monday night after we got home and he went to school, he woke up in the middle of the night with an earache so bad that he woke us to help him. Unfortunately, he came in at 2:45 AM in after I had just settled down from an hour of coughing fits. I gave him ear drops to ease the pain and he got to bed. I took a little cold medicine.

Tuesday morning, we went to his regular pediatrician. By this time, Spencer had a wheeze and Dr. Cardwell was concerned he might have pneumonia and ordered a chest X-ray. Spencer was scheduled for a procedure on Wednesday and we had to postpone that. The Chest X-ray was clear (I’ll have to scan it and upload it, it’s really cool to see his port-a-cath on the X-ray), so we’re probably good. Just in case, he had an appointment with the oncologist Wednesday and they drew blood to culture. We return tomorrow to check things out and reschedule the procedure that was to be.

In other news, we are talking about plans to ride 2 days of RAGBRAI (I am writing the check now) and ride the 70 mile ride in the LIVESTRONG Challenge on October 14.

More on all of this later.

A Lion in the House, the award-winning documentary that follows the journeys of five young cancer patients and their families over a span of six years, will be shown in Austin in its entirety at the Alamo Drafthouse South Lamar at 1:00 p.m. this Sunday, June 18.

The LAF, along with several other cancer-related organizations, will staff information tables at the event. If you do not have plans for Sunday, please consider attending this screening and supporting A Lion in the House. Tickets can be purchased in advance at the Alamo Drafthouse Web site – $8 for general admission; $6.50 for students and seniors. Half the proceeds from Sunday’s screening will be donated to a fund for the A Lion in the House families.

LAF funding of A Lion in the House included $100,000 for post-production costs as well as $50,000 to ITVS to match and fund up to $10,000 in grants for public television stations to plan outreach activities in conjunction with local partners surrounding the broadcast of the film. In addition, the LAF awarded $15,000 to long-term cancer survivorship clinics to hold events to connect adolescent and young adult cancer survivors with their local survivorship clinics across the country.

Reviews of A Lion in the House follow here:

A FILM OF QUIET, ALMOST INCALCUABLE POWER. The children are only one point in the film’s larger design. The doctors and nurses are presented as deeply committed to their patient’s care. Says one oncologist, “I want it to be hard. If it starts to get easy, I need to pick something else to do.” In almost every case, the physicians become welded into the inner family circle. “A Lion in the House” is one of those experiences that leave a viewer with a profoundly enriched awareness of life’s fragility and our own unexpected strength.

-Ty Burr, The Boston Globe

ASTONISHING. IMMENSELY REWARDING…Such a remarkable series of profiles in courage, and in the human will to live, that pic’s cumulative effect is nothing short of humbling, cathartic and even euphoric.

-Scott Foundas, VARIETY

A monumental work destined to be considered one of the major documentary achievements of our time, “A Lion in the House” is among the most moving experiences one can have at the cinema…the cumulative effect goes deeper than sadness, touching the core of human courage, compassion and strength.

Filmmakers Steven Bognar and Julia Reichert (whose own daughter is a cancer survivor) document this story with respect and dignity. A Lion in the House is ultimately an inspiring drama of ordinary people enduring impossible choices and uncertainty.”

-Sean Farnel, TORONTO HOT DOCS FILM

Spencer is in remission from acute lymphoblastic leukemia and is now over halfway through 38 months of chemotherapy. He finished Kindergarten last month and was advanced to first grade without any issues. His attendance record shows him absent slightly less than 10% of the year which mostly reflects going to doctor appointments and missing Thanksgiving week when his immune system took a vacation. He missed getting chicken pox despite likely being exposed.

Right now Spencer is at summer camp and he is having a ball. They have two week sessions and the last night of each session the kids (five and over) can attend a “camp out” (they sleep inside) at the camp. Activities at camp include horseback riding, swimming, art, music, hikes in the woods, fishing, and sports. When I asked if they could do Spencer’s bedtime pills at camp, I asked the wrong person and she said no. Spencer did not accept that and cleared it with the camp director. His first sleepover went great. Spencer self-regulated and stopped eating well over an hour before bedtime.

Today is that eighth week of his current maintenance cycle which means he had IV chemotherapy before camp. The doctor visit was largely uneventful though Spencer seems to be having some bronchospasms. They are only really happening at night or when the doctor pushes on his chest while Spencer exhales as hard as he can, so we are hoping a little albuterol will clear it up.

His chemotherapy dosages slowly creep up as he grows. Each visit they weight, and sometimes measure, him. They use those numbers to calculate an estimate of his body surface area and look up the target dosage of his chemotherapy in a table. Today, the dosage for his steroids and mercaptopurine went up.

Jacob is a toddler. He is a somewhat easier child to raise than Spencer has been. Favorite activities this week include

• running across the room yelling “my Daddy” when I enter the door at daycare
• pretending to serve me pizza and coffee, which apparently both arrive via the front door
• “go to [It’s a] Grind” – the coffee shop where I often buy coffee and sometimes work
• “go HEB” – grocery shopping
• any activity that will result in concrete truck or school bus sightings

He climbs into (and out of) his crib with great excitement. Climbing in requires a somersault over the bars. I do not want to know what he does to get out. He refuses to do it when I am watching. The other night he had a little difficulty in bed. At about 9:30 I heard the boys’ bedroom door close and Jacob was in the hall wearing just a diaper. He said “need help” when he saw me. Apparently he opened his sippy cup and spilled water all over. Naturally, he took off his wet clothes and stripped the crib to clean up. I probably would not have found out until morning except he dropped and lost his pacifier by the bookcase. He must have climbed to look for it and took all of the books off the first shelf of the bookcase before he came out to ask for help. Amazingly, Spencer slept through the entire exercise including me putting the toddler, bookshelf, and bed back in order.

Rachel is away this week on a business trip and I have just started a half-time project, so life is a little more short on free time than usual.

Lion in the House follows the lives of five kids with cancer and will give you insight into the variety of living with pediatric cancer. Some of it is hard. Some of it is great. Some of it is heart breaking. “You know you are truly alive when you are living among the lions” – Isaak Dinesen. We’ve got a lion in our house. Check out some others on PBS next week.

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.

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.

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.

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.

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

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.

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.

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….

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.