Stories about my son, six year old cancer survivor Spencer Sartin. True tales about having a child with cancer. Profiles of cancer survivors. Cancer resources.
Kevin Livingston at Pedal Hard set us up to do indoor training g today while doing live spots for News 8 Austin. He gave Spencer some advice on form and suggested a shorter crank arm.
On again at 7:12.
The Smoke-free Texas coalition is joining together on Thursday, January 29, at 1 PM ok the south steps of the Texas Capitol. I just received a note from the LAF that Lance Armstrong will be speaking. The American Cancer Society advocacy folks will be there as well
Please attend and wear LIVESTRONG or other cancer-related clothing. Let’s let the Texas legislature know we want to breathe clean air and not be forced to inhale second-hand carcinogens.
My Dad quit smoking when my Mom made their condo smoke-free. That little push of inconvenience can extend lives. It also saves non-smokers from unhealthy smoke.
If you are wondering why I haven’t been posting. For a long time, it’s because:
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.
JB is raffling his 1963 Ford F100 to help fight cancer. You can learn more and get a chance to Win JB’s Vintage 1963 Ford Truck. Funds raised will benefit the Leukemia Lymphoma Society. The Leukemia Lymphoma Society’s mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.
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.
Early voting opened Monday for the Texas election, which consists of a number of ballot initiatives. I’m planning to go vote tomorrow 
in favor of proposition 15, which creates the Cancer Prevention and Research Institute of Texas and authorizes $3B of general obligation bonds over 10 years to fund cancer research and prevention in Texas.
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.
An open letter to Lance Armstrong and Doug Ulman (CEO of the LAF),
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
Oh dear, what a long hiatus. I feel a desire to dig through my journal and family newsletter to backdate some postings to reflect the past 9 months, but for now I’ll just dive right in.
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.
This just in from the Lance Armstrong Foundation volunteer mailing list:
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
Rachel reminds me that I haven’t said enough about how life is going these days.
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
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.
KLRU’s Austin NOW is doing a show this week on two Austin cancer survivors. Spencer is one of them. They filmed a couple of typical activities in Spencer’s life – an oncologist visit and a rock climbing class – and interviewed Rachel, Spencer, and me. I haven’t previewed any of it, but based on watching other Austin NOW shows and talking with the producer I am sure that it will be great. The show is a lead in to Lion in the House which is premiering (in two parts) June 21 and 22 on PBS. Visit the web site for local station and time. It’s on KLRU in Austin at 8 PM each night.
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.
Rob Sartin is the father of Spencer, a six year old leukemia survivor currently in treatment until approximately December, 2007. When not occupied dealing with Spencer's leukemia, Rob consults with Omniscient Turtle.
