Saturday, August 5, 2017

Someday is today.

Two weeks ago, my sister asked me to ride with her.  We took a familiar route, one that we had travelled many times in the months that we trained. It was a beautiful day, and the first time since our race in June that I had even been on a bike.

"Laurie, we rode our bikes for 100 miles."

I repeated this statement, for the literal meaning, which was kind of astonishing to me on its own merit. 100 hilly miles is no small thing.  But it represented something far more significant and symbolic: the medical hills and distance that we have travelled as a family.  I find myself in a bewildering place.

Since that beautiful New York day, a mere seven weeks ago, my daughter Lauren has had three surgeries and a confirmed diagnosis of extraskeletal osteosarcoma. As we searched for therapy options that might spare her the risk of treatment induced leukemia, Brent was found to have AML.  This devastating relapse was confirmed the night before Lauren began the exact protocol that caused Brent's blood cancer.  Without any better options, we nonetheless began pumping Lauren with the same poisoned cocktail that we fed to Brent six years ago. 

Watching this infusion made me just as nauseous as the cisplatin made my daughter.

There aren't words to describe how busy, nor mentally and emotionally taxing these weeks in hospital have been. 

Each of the kids prepared for treatment, dyeing their hair in anticipation of losing it: Lauren donning bright purple and Brent going with sky blue. Lauren worked with her tutor, finishing all of next years math while she waited for chemo to begin and healed from surgery.  Lauren shopped for hospital gear. Brent had a get-together with friends. Cancer has become somewhat normalized in our home, which is probably good, but is also kind of disturbing.

We have had several admissions with both of them in at the same time, often on separate units and in different buildings. This has been completely overwhelming.

My sister had urged me to bike with her, in order to clear my head.  As we passed familiar barns and climbed elevations that we had trained on dozens of times before, I would pointedly repeat, "We rode our bikes for 100 miles." 

My sister would affirm this statement.  "Yes, Ann.  Yes, you have. You have done this.  And you will again."

While the specific challenges of finding appropriate treatment options are new, the process of 'figuring it out' is not.  We found a way to graft skin from Alex to Brent, relentlessly asking folks to consider our unique problem.  Dan reminds me of how we initially and repeatedly have been told 'no' over the course of the past six years and urges me to keep asking. It is often about asking the right people. Bold, creative and courageous people, in the right specialty. We have been blessed to have so many cross our path, just when we needed them.

I have worried and doubted about how this will happen again, the RamerNation pulling another rabbit out of a hat. My son is determined, so this inspires me to get busy looking. My daughter is strong, which bolsters my faith.  My husband encourages me to keep asking, learning and advocating.  Our family is simply better together. The combination is synergetic. We are much stronger than the sum of our parts.

As Brent finishes his bridge therapy this weekend, after a gnarly detour through PICU, I am thinking about our next steps. We will look in earnest for trials, particularly immunotherapy options.

I was biking less than two months ago to support Cancer Research Institute, with the theory that immunotherapy might be something that my kids would someday need. Someday certainly came crashing in on the heels of that ride.

Someday is today

We welcome your prayers for our family.

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