March 5, 2016, 2:31 a.m.
On Monday, Aila "made counts" with an ANC of slightly over 1000. It'd been a formidable weekend, with vomit everywhere and Aila and Brian down for the count (no pun intended). We were all frazzled and limp from the duress. By Sunday, I was reallly hoping that her ANC would be sub-750 and we would remain paused on the leukemia highway a bit longer, with a few days or even a week to catch our breath. Alas, Monday's ANC was an A+, and this ghoulish weekend became the closing act of Delayed Intensification. In all, Aila and her family navigated and weathered 77 DI days awash with 12 intravenous chemotherapy infusions, 2 spinal taps for CNS chemotherapy, 2 emergency late-night ER visits for fever, 18 inpatient days and nights at Benioff, and 4 blood transfusions. She received 5 different chemotherapy agents intravenously (doxorubicin, cyclophosphamide, cytarabine, vincristine, and pegasparagase), 1 (methotrexate) into her spine and up into her brain, and 1 (thioguanine) orally for 14 days. She took an oral corticosteroid (dexamethasone) for two separate weeks. 12/15/15-2/29/16, including Christmas and her third birthday.
Halfway through, I had made a list of typewritten "Cosgroverstreet family goals" and taped them to the wall. There were 5 in total, and included the following: (1) Protect Zander as much as possible from the chaos; (2) Keep Sissy as comfortable as possible; (3) Minimize chaos; (4) Speak with empathy to each other; and (5) Survive. We did our very best with #s 1-4, and our best was admittedly at times entirely not enough. But we're still standing. A+ for #5.
Bright and early on Tuesday, the next "round," dubbed Interim Maintenance (IM) 2, ferociously began with a spinal tap and intravenous infusion. She was still sick with whatever stomach bug had plagued her all weekend, but Brian was right that the need to commence IM 2 entirely trumped anyone's concern about her well-being. She made it through Tuesday and then has spent the rest of the week vomiting and having diarrhea with unparalleled conviction. We've done so much laundry that the hose just twenty minutes ago spontaneously detached itself from the wall and began flooding the house. (I heard the water and we swept in to intervene.)
Again and again, I find myself considering a handful of hackneyed and timeworn lessons when I think of what we've already learned amidst Aila's cancer. Embrace the moment. Live in the now. Dig deep to realize a strength that you never knew you had. Life comes with no guaranteees. Really, what does matter when your child could die? Does anything? Should anything? Like I mentioned in earlier posts, I find myself clinging with all my might to make sure I don't lose my pre-cancer world. But am I fooling anyone? Of course everything is changed forever, and change in our lives is inevitable and necessary. There is no purpose to Aila's cancer, but maybe the Cosgroverstreets will take and make something from it that allows us to grow and appreciate the world in ways that we were previously incapable.
At this point, I don't know what that means. With some acuity, I can pinpoint things about which I still care, even with thoughts of cancer swirling through my mind all day long every day. I suppose it goes without saying that I care about my family--Brian, Zander, Declan, Trin, and of course, Aila. I continue to care about the adolescents with whom I work clinically and their families. I enjoy teaching and mentoring, and I care about the young people with whom I have the pleasure of working. And I feel so lucky and even honored to have reconnected with so many friends, past and present, near and far. I suppose it's fair to say that I continue to care about people.
I do continue to pursue, often with a vengeance, my academic pursuits--writing manuscripts and grants, conducting research, trying to figure out ways up the academic ladder. I'm less sure about those and their meaning. But I work as hard as I can, for fear that cancer might take them away.
After all, Aila's cancer has already stolen a ton. What do I miss? First and foremost, I miss the trails and the outdoors. We used to take the kids hiking every weekend, but I've been in the forest maybe two times since she was diagnosed, as there is simply no time. I miss its peace and tranquility. I still think that the very best place I've ever lived in my entire life was a small, above-a-garage apartment in the foothills outside of Boulder during graduate school. And probably more importantly, I miss feeling like a strong woman who is part of a healthy, resilient family. Sickness abounds, always--our daughter has been sick in so many different ways, nearly every day, since last August. And there seems no easy way to feel strong or resilient when there is simply never any break --Stanford, Pinterest, cancer, or regular old parenting--and amidst constant sleep deprivation.
I really, really miss having fun. Maybe it's that simple? Sweet dreams, my beautiful, bald, baby girl and my sweet sons. Tonight, I will dream of the fun that we will all have one day.
Comments
Andri 8 years, 9 months ago
I have no words. Just love and so much admiration for your resilience and courage. Thinking about all of you.
Link | ReplyDonna 8 years, 9 months ago
I feel every moment of this. Thanks for writing so elegantly and honestly. You are so strong in the face of all this. Kai, Tyler and I continue to send you well wishes and thoughts for a bump free treatment. Miss you tons.
Link | ReplyAmy Cutter 8 years, 8 months ago
Your strength and love for your family is unbelievable. Your blog inspires me to continue to fight for answers for our son....through tests, counts, specialists, etc.
Link | ReplyI pray often for your family, and especially for your daughter....hoping that you eventually reach a sense of peace and the cancer leaves her little body! You are an amazing Mom for all you do!!
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