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This blog post originally appeared on Insight, Dana-Farber Cancer Institute’s blog.
When our daughter, Ruby, was diagnosed with acute lymphoblastic leukemia (ALL) at one and a half years old, my husband and I were immediately transformed from working parents with two young children, to parental caregivers for a child with cancer. Between hospital stays, medications and appointments, there was so much to keep track of. It can be overwhelming at times, but there are ways to manage life after your child is diagnosed with cancer.
Settle into to this new normal. It can be easy to stay in crisis mode when something like a cancer diagnosis interrupts your life, especially when it happens to your child. When you are able to move forward, even under extraordinarily tough circumstances, and accommodate time for your new obligations, it is easier to keep things consistent for you and your family.
Take advantage of technology. Ruby’s treatment consisted of three-week cycles of chemotherapy from January 2012 to February 2014. Her specific medication regimen changed from week to week. My husband and I shared a family calendar on our phones to organize medications, appointments, and to-dos. We also made spreadsheets to track her medications, and referred to this daily to assure accuracy with each medication dose.
Boston Children’s Hospital strives to create a comfortable, supportive environment for all of its patients. Still, most can’t wait to leave the sterile hospital halls and return to the comfort of their own homes. Anna, a 20-year-old college student from N.H., has other thoughts.
“I can’t wait to come back to Boston Children’s.”
Joe Sullivan started gaining weight in the summer of 1978, when he was 17 years old. He put on 40 pounds—all water, but he didn’t know that.
By October, the swelling in his legs and ankles kept him out of school, and a tutor started coming to his house. Months passed. High doses of prednisone—the drug required to treat the swelling—kept him up at night, but, “presto magic,” recalls Joe, “I got better, went back to school and graduated with everyone in May. I didn’t understand what was going on. My parents weren’t the types to speak about it.”
Joe started college that fall, hitchhiking the 32 miles between home and school. The semester went smoothly, and all seemed well until a couple of days after Christmas, when he was admitted to Boston Children’s Hospital. He was diagnosed with nephritis, inflammation of the kidneys.
Joe doesn’t remember much from that time. “Next thing I knew, I was on dialysis,” he says. “Soon I was going for five hours per day, three days per week. I was so sick. I weighed about 80 pounds. I had to pretty much stay in the hospital.”
That dialysis schedule continued for more than six months, until Joe learned he was eligible for a kidney transplant. “I was lucky,” he says. “My older sister Kathi was such a good donor match that the doctors said we were practically identical twins born seven years apart.”
The kidney from his sister that continues to sustain Joe, now 53, was transplanted on Thursday, August 28, 1980. “After the transplant,” he says, “I spent a week on my back in the ICU. And the rest is history.” And it is: 34 years, and counting.