A Family’s Ordeal
It was Christmas Eve of 2014. We joined our daughter Nikki and her family for dinner, only to learn that our granddaughter, Lucy, had become extremely ill with pneumonia. Earlier that week, Lucy had seen her pediatrician and two other physicians. At 11:00 that night, while Lucy’s big brother Max, just five, dreamed of Santa’s arrival, the hematologist from Seattle Children’s called to notify Nikki that Lucy had leukemia. Lucy was immediately admitted to the cancer ward at Children’s, and life for our extended family would never again be the same.
The next few days were surreal. On the 30th, we learned that the length of Lucy’s stay would depend on how soon the house could be prepared for her return. The kitchen had to be sterilized; the refrigerator purged of any opened containers; walls, floors, doors, air vents and any other hard surfaces washed with bleach. Every inch of the bathrooms got similar attention. Anything Lucy might touch, even in her own room, pillows, stuffed animals, toys, bedding had to be washed in extremely hot water and sanitized. As the next day came to an end, we began to realize it was more than five adults could do, and with the help of a friend, a professional cleaning crew arrived on the afternoon of New Year’s Eve to sanitize the pillows, carpets, cushions, and other soft surfaces. The house was finally ready for Lucy’s return, but the family was beginning to understand the magnitude of the challenges ahead.
In the first week of Lucy’s cancer journey, our family spent more than $2,500 before seeing any bills for doctors or hospitalization. In the second week, Nikki resigned from her job; Lucy required 24/7 care. Their family income was cut by 40% as expenses skyrocketed. Every day brought unanticipated requirements for the most mundane of Lucy’s needs: her pajamas and bedding required daily sterilization; daily bathing was essential to protect her skin from the burning toxicity of chemotherapy drugs. The house had to be warmer, food had to be freshly made, all clothes changed after being away.
Lucy’s transportation for frequent hospital visits was complicated by her growing weakness, making walking difficult. To accommodate a large stroller, we gave Nikki our mid-sized sedan with a large trunk. When Joanie and I made our twice weekly trips to the hospital, we ate in the cafeteria, or the local Starbucks, or ordered take-out from somewhere close. We spent 4 partial days and two precious nights a week at the hospital with Lucy so Nikki could be with Max. We continued with our weekly sanitation of the house, supported Max and watched helplessly as all the related expenses quickly mounted. We would have spent our last dime if it meant Lucy’s survival.
For more than five years, our family maintained this vigil with the love and support of hundreds of friends and acquaintances, some on the same uncertain journey. The emotional toll of Lucy’s ordeal was staggering and our “new village’s” presence in our lives was a blessing. But the financial impact exceeded anything we could have imagined or planned for. Even though Seattle Children’s waives some expenses, the family must still meet their insurance deductible, at the time $10,000, and the enormous cost of genetic sequencing, one of the most critical steps in treating leukemia.
You can join this important effort to help sustain patients’ families and to fund ongoing research efforts and treatment by donating to this cause. Every penny For a Cure NW raises goes to the High-Risk Leukemia Program at Seattle Children’s Hospital. They are a source of hope and comfort for families on this difficult journey, so please give generously.
We lost Lucy in June of 2020. With broken hearts, we now fight cancer in her name.
Don & Joanie Barbacovi
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