Aug. 13, 2016, 7:54 a.m.
I took Aila to the Stanford ER on August 8th in 2015, and cancer began. It's been a long, long year, and we decided we needed a break. 365 days and 52 weekends at 326 Elwood. Brian went on a work trip for 3 nights, and we all went to Santa Cruz for one night to see our friends Heather, Tom, Reino, and Laila. And we certainly spent our fair share of nights at Lucille Packard and UCSF Benioff Children's Hospitals. But we needed a break from the relentlessness of our 1400 square foot house, where post-diagnosis Declan has learned to crawl and walk, amazing people have helped us survive, Zander has prepared for kindergarten, and Aila has been a chemotherapy patient.
It's scary to leave home with a cancer kid. The goal of Aila's treatment is to compromise her immunity, so she's kind of walking around with a target on her back that invites wayward bacterial or viral visitors. What no one tells cancer parents about treatment with chemotherapy is that their child could possibly be SICK for the duration of chemotherapy. Not a runny nose here and there, but rather a virus that knocks our kid on her back for twenty-two hours straight while her little body attempts to launch some kind of immune response (this happened last weekend). A virus like this 2 or 3 or 7 times a month, hopefully without a fever, since that means we head to the ER. And if we leave home, we have to go to a new ER. A new and uncharted ER?!! Good god, why would we want to risk that? What if no one there knows how to access her port (and they won't, trust me, since they barely know how at the UCSF Benioff peds ER)? What if she gets really, really, really sick in an instant, and we are nowhere near her oncologists? What if? What if?
But the walls at 326 Elwood. So narrow, so confining. Like a giant cancer cage. It was time to venture out.
We drove up to Tahoe yesterday, a storied destination for Californians but a place where we'd never been. I had already investigated the local hospitals (Tahoe Forest Hospital in Truckee has a decent 24-hour ER), and the distance to the nearest Children's Hospital, at UC Davis. Aila was amidst some sort of awful gastrointestinal virus, so that morning (and for three days prior) she had had wild diarrhea and thrown up in the sink. But we headed out anyway, figuring that she could be sick at home or in Tahoe, and that the only real difference was the intensity of her parents' fears and the familiarity of the Tahoe Forest Hospital ER. We stopped in Sacramento at Whole Foods to get some supplies, and Aila ate raspberries and blackberries with her brothers as we headed toward Truckee...which is about where she vomited all over the back of the 4Runner. Cancer, virus, regular old car-sickness? We pressed on, as vomit is a regular part of our lives.
The amazing thing is that I genuinely feel proud of my babies and their willingness and commitment to roll with the punches that the last year has brought, again and again and again. That they're still laughing and giggling (when they're not crying or yelling). The sad thing is that we haven't done too much together as a family in the last year, other than hover precariously within the giant cancer cage, maybe venturing out for a run with all kids in strollers or occasionally wandering to Stafford Park 1/2 mile down the road. Quite different from our family's pre-cancer life, when we'd pack the kids into the car and head up to some remote trail in the Redwoods every weekend. Cancer has stolen a lot, but perhaps the biggest loss of all was Brian's and my abilty to translate our energy as humans into creating spontaneous adventures and travels for our kids, into the foothills, on foot (or in backpack or mountain buggy) and into the sun.
But don't worry, Aila. Your mother may have turned 40, but her energy is at an all-time high! And your father's only 33! Stay tuned for adventures far and wide, my beautiful and sweet baby girl.
Comments
Chris Cosgrove 8 years, 3 months ago
Hi Vic, Love those words, 'stay tuned for adventures far and wide'. Music to my ears even though tears in my eyes at the first paragraphs.
Link | ReplyWe're in SD til Monday and then the work of moving Gram to a fine facility....wrenching for anyone who's nearing 105.
Miss you.
Chris
Angela Tana 8 years, 3 months ago
Happy birthday Vicky and I pray that this year is much improved. Your boys and your daughter are an amazing little clan. XOXO
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