My excuse for taking an extended break from the blog is we were preoccupied the whole summer with traveling in between regular work and play and preparations for the girls’ upcoming school transitions. On two big car journeys (out West and up North, respectively) we covered thousands of miles to traverse 28 states in the course of visiting 5 national parks, a number of scenic state parks, and our favorite coastline. While cf accompanied us as usual along every leg and stop of the way, I’m grateful to say it stayed quiet enough in the backseat for us to enjoy plenty of unfettered driving, exploring, trekking, sightseeing, camping, packing, and family time. Yep, our summer was bright and busy and fun. It was a bucket checklist kinda summer.
Now as we welcome fall routine, Lou is settled comfortably, growing and thriving in first grade. Av has found her tribe at an exceptional public magnet arts high school. Our days demand a lot, but mostly, everything is just swell.
Everything was well. I was beginning the long exhale of having both daughters finally back in school when cf wreaked havoc once more.
Av is dealing with an adverse drug reaction, a complication surely landing high on the list of alarming setbacks patients with chronic illness and their parents must face. Its onset comes fraught with questions, concerns, and regrets. At the heart of the matter is: my child’s acute physical pain and safety; potential long-term effects from a course of medicine that was only supposed to help, not hurt; and a steadily shrinking list of available treatment options for the future.
We’re convinced the culprit was a heavy-hitting two-week course of oral antibiotics, previously tolerated, but which has left Av saddled with mind-numbing, debilitating tendinitis of the wrists and knees. Since when did a kid treated for a lung infection wind up in wrist splints and knee braces? This is a reckoning with risks versus benefits.
Life interrupted by tendinitis means her participation in JV tennis and orchestra programs halt; a relatively fit 14 year old takes the elevator instead of stairs; and she struggles in first quarter of high school to keep pace with note taking, essay writing, art projects, and a CPR unit. All because of her medical treatment. It’s frustrating and disheartening to stand by knowing she’s in pain as she tries to sleep, write, draw, play cello, play sports, catch the bus, do therapy, and otherwise move normally about her life. It seems so unfair.
Yet when have we ever known cf to be just, considerate, or discriminate.
I hope eventually we conclude, ‘this ill-timed adverse drug reaction rudely interrupts her regularly scheduled cf life to bring lots of extra strength and resilience.’