Riding for Roses

Our five year old son, Spencer, has leukemia. He’s in remission since day 7 of his treatment, has an excellent prognosis, and, if all goes well, he has about two and half years of chemotherapy to go before he is done.

Every once in a while, I like to tell the story from the beginning. It helps me figure out what the highlights are. It gives me a chance to cry and as I have said before, that release is empowering. It also gives me a chance to tell the story to new visitors to this blog. I expect some new people these days with Austin TV stories about Spencer as Lance finishes the Tour de France.

Before I start, I want to just quickly encourage everyone visiting to donate to support cancer survivors and Spencer personal Ride for the Roses. If you are in Austin, be sure to visit the Tour Watch 2005 at Central Market North. Spencer and I will be there Saturday and Sunday from about 8AM to noon. We will be giving LiveStrong wrist bands to people who donate to the Lance Armstrong Foundation and distributing other LAF promotional items.

Life Before

Last year, we were cruising through life as usual. Four year old Spencer was in Montessori school. We had a new addition to our family with Jacob born in February. Rachel was working at IBM. I was consulting, then accepted a position at AMD, and then backed off to half time as it became apparent that family duties wouldn’t support me working full time. Family stuff was going as family stuff does, sometimes good and sometimes bad. We had some challenges with Spencer. Jacob was tricking us into thinking he was a perfect baby.

I was using some of my spare time to train for the Ride for the Roses, a fundraising ride for the Lance Armstrong Foundation. Last year I wanted to make it big. I wanted to raise $5000 and attend the Peloton Appreciation Dinner event during the Ride for the Roses Weekend. I made it just before the deadline.

As the Ride approached, family responsibilities and a desire to change careers led to my resignation from AMD. My last day at AMD was October 15, and that night Rachel and I attended the Peloton Appreciation Dinner.

Life Changes

While we were at the Peloton Appreciation Dinner, Spencer began running a fever. Over the weekend, we gave him some acetaminophen and the fever would go down briefly. I did the Ride for the Roses on Sunday, but the family stayed home since Spencer was not feeling well.

By Thursday, we were mildly concerned and took him to see his doctor, Dr. Brent Cardwell of Austin Regional Clinic, just to check things out. Dr. Cardwell did not think anything serious was happening, but ran a few tests just to be sure. He did a chest X-ray and drew blood for a complete blood count (CBC). Spencer and I headed out to pick up Rachel at work. Dr. Cardwell did not like the CBC results and stayed at work to track us down. He found Rachel at her office and told her the counts were either very bad and Spencer probably had leukemia, or there had been a lab error—either way, we needed to go right away to the after hours clinic to re-test. The orders got bungled a little and it took time to get the test. The doctor there said we didn’t have anything major to worry about, several things could explain the bad CBC results. The next morning, Dr. Cardwell called us at home to tell us he was almost certain it was leukemia and had us head directly to Children’s Hospital of Austin. He had made an appointment for us to see Dr. James Sharp, an oncologist at Specially for Children next door to the hospital.

At the oncologist’s office, they needed yet more blood and this alone was getting traumatic for Spencer. Dr. Sharp needed to do a bone marrow aspiration, which basically involves a corkscrew-like tool taking a little core sample of bone marrow from Spencer’s hip. We had to wait a few hours because we had foolishly let Spencer eat breakfast after the urgent care doctor had told us there was nothing much to worry about. At this point, Rachel and I were still in shock. I don’t even clearly remember what we did while waiting. We checked Spencer into the green unit (the cancer unit) at Children’s Hospital. The bone marrow confirmed and refined the diagnosis. Spencer had pre-B-cell acute lymphoblastic leukemia and had an 86% chance of five year recurrence free survival, and if there were no problems in treatment he would have three years and two months of chemotherapy.

I began to call family and friends. The first phone call, it took me probably 20 seconds to get the word “leukemia” to come out of my mouth.

I wrote The Word They Say is Leukemia during the next 12 hours in the hospital.

On November 4, we got news that Diane Brimmer, my wife’s mother, had cancer—either a second cancer or a relapse of her breast cancer. That worsened through November, and in early December Rachel and her brother Arnie went to Iowa to be with their parents. Diane passed away on December 13 in a hospice.

The New Normal

Fairly quickly after Spencer’s diagnosis we settled into a routine. We did projects and watched TV at home. Rachel worked. Every Friday, she took the day off and the three of us went in for Spencer’s chemotherapy while Jacob stayed home with the nanny.

As Spencer began to get energy back, he asked to return to his martial arts class, and then shortly before Thanksgiving, he began to smile and laugh again. We even managed to have a bunch of my family come to visit for Thanksgiving and it was a huge relief to have that bit of normality in our lives not be stolen be cancer.

We chose to put Spencer in a clinical trial (CCG-1991) comparing a 2×2 matrix of chemotherapy variations. We placed in the branch with normal strength oral methotrexate (the other choice was increasing dose IV methotrexate) and 2 delayed intensification periods (the other choice was just one).

Riding for Roses

The first day in the hospital, I agreed to shave my head when Spencer’s hair fell out. During the rest of the stay, I agreed to do the 6 mile ride at the Ride for the Roses and help Spencer get to the Peloton Project dinner. Then he raised the stakes. He wanted the 25 mile ride. And a yellow jersey award.

Then the numbers came out. The LAF raised the goal for a yellow jersey to $25,000. They also announced the ride weekend would be October 21-23. It will include Spencer’s one year diagnosis anniversary. My motivation went up. Spencer negotiated a change to the 40 miles ride.

Maintenance Break

During the early part of this year, and again in April and May, we got a taste of the long haul. The chemotherapy runs in cycles: 4 weeks induction, 4 weeks consolidation, 8 weeks interim maintenance #1, 8 weeks delayed intensification #1, 8 weeks interim maintenance #2, 8 weeks delayed intensification #2, and then maintenance for the rest of the time. Maintenance was a little breath of fresh air. Spencer got more energy. He was back in school. His counts were good and he had an immune system.

During the first interim maintenance, he almost grew some hair back. During the second, he actually got a full (but short) head of hair, which fell back out a couple of weeks ago.

Intensification and Crashes

The delayed intensification causes a lot of fatigue, nausea, and shuts down the bone marrow in the second four weeks. That means that red counts, white counts, and platelets all plummet. Transfusions and isolation protocol are the tasks. During the March/April intensification, the weather was just right for daily trips to state parks, so we visited almost all of the state parks that are an easy day trip from our house. On most of the trips, even a glorious misadventure we met wonderful people (while avoiding crowds and washing hands frequently) and had great times.

Now

This month, we are fundraising at the Tour Watch 2005 and working on a raffle event at It’s a Grind coffee shop in Plaza Volente (620 and Anderson Mill Rd in Austin). Please, if you like this blog, subscribe to the RSS feed or at least visit frequently. Also, you can donate to support cancer survivors right now and help Spencer and me reach this insane goal.

Spencer is 5 weeks into delayed intensification #2. His immune system crashed harder and faster than we thought, but he’s doing well enough to spend this weekend at the Tour Watch.