Sept. 18, 2016, 11:54 p.m.
Disclaimer for this blog's title: I've become a hugely superstitious woman when I speak. I remember where I was standing in the kitchen, the month after my mother had died and the dog had just been diagnosed with cancer, when I proclaimed rather flippantly to Brian, "I mean WHAT else could possibly happen?" Ha ha. Aila's gone to preschool four separate mornings! Bravo, my sweet angel! We had to pull her out after 1.5 hours this past Tuesday for back-to-back doctors' appointments and an infusion up at UCSF. And on Thursday, she was four doses of steroid in when she went to school, and Ms. Edna only said that she was a bit "standoffish." But by any measure, this is success.
Aila's steroid pulses have gone more smoothly for the past two months thanks to our dosing her with risperidone, an antipsychotic. During one of our last hospitalizations, I asked for a psychiatric consult and specifically for risperidone, since I had read that there may be some limited efficacy in its ability to counteract the insanity of dexamethasone. After gutting through the first two pulses--you remember, when Aila stormed around the kitchen island in her diaper screaming at the top of her lungs for over an hour one night before passing out next to the garbage can at 2am, or how about the time that she refused to put a diaper on in my father's apartment and shat all over his carpet intentionally?--we were willing to try almost anything. Ativan had no impact, and benadryl was like giving her a glass of water, it seemed. So, we pressed for the oncologists to fill the risperidone prescription, which we'd already been promised months ago.
Fourteen months deep into leukemia treatment, I have had many exchanges with doctors and nurses that, when I pause to consider, still make me chuckle. Take for example, when a nurse finally came into our hospital room and innocently asked, "Is there something wrong here?" while Brian and I were having a huge fight about I-have-no-idea-what on Day 12 of Aila's hospitalization, as Decky and Zander spread play-doh all over the hospital floor. Nah, everything's good here, nurse. What's on the menu for dinner? Or when Aila's nurse practitioner said to us, suspicion in her voice, after Aila had gotten yet another yeast infection after yet another round of IV antibiotics after yet another ER visit for a fever, "I'm very confused. I have never seen another little girl her age get this many yeast infections." Okay, do you want to maybe process this experience a bit, nurse practitioner? This must be hard for you. I swear that we're doing nothing untoward to our little girl save drowning her cells intermittently with first poison then cefapime. Pinky swear.
But my absolute favorite--one that can make me smile in the middle of a dark rainstorm--is my interaction with Dr. Robbins about risperidone. She's the attending, so Aila and I had already met extensively with the Fellow that day a few months ago when I decided to push for risperidone, before she trotted in with her handbag over her shoulder, suggesting that she was on her way out the door for the day. She looked grimly at me and began to explain the "effects" of risperidone, saying with a morbid tone that we should consider "gutting through" the dexamethasone pulses because, after all, "we just don't know what those drugs [antipsychotics] do to the brain." Oh, Dr. Robbins, really? That's really, really, really the argument you're going to make? Can you tell me the exact impact of the dozen or more chemotherapy medications that you've given Aila? How about the ones that you specifically send wafting up to her brain via her spinal cavity? What's her brain going to look like in the future? Her reproductive system? Her gastrointestinal system? Her heart?
I smiled inside during that interaction, remembering that what I wanted was the risperidone, whatever it took. As I had so many times previously, I swallowed my vitriole and emotion, and said a quiet, "Ok, thank you." I went home with the prescription, and our family (including Aila) has been able to carry on, live, and rest during Aila's last two dexamethasone pulses. The funny thing is that we've heard before this reference to families' "gutting through" the steroids, as though there is some glory in the agony. It's such a crazy concept to me, to think that in some strange way the medical system rewards individuals (in our case parents) who are silent sufferers. That those who dare to say something are "complaining," or perhaps not enduring just enough suffering, not gutting through enough. I get so confused about how things get so turned around--in their heads, in ours. I thought we had suffered, are suffering, yes? Is it not enough? I thought the goal was to advocate for our child so that our family can carry on, minimize the suffering so that Aila can go to preschool and not sleep next to a trash can in her diaper every three weeks during her steroid pulse?
We head to Camp Okizu (family cancer camp) next weekend. We're excited and nervous at the same time, falling asleep with dreams of meeting others who have shared our experiences but nervous that they don't exist. Stay tuned...
Comments
vk 8 years, 2 months ago
The risperidone worked?! You should add to the case series that was your inspiration to give it a try. That is a huge deal! Nice work, Vic. I could hear the sound of your voice in this post. I felt as if I was standing in your kitchen listening to you provide an overview of how some things have unfolded. Hard to believe Aila is in preschool. This is all extraordinary.
Link | ReplyAngela Tana 8 years, 2 months ago
Vicky I think that camp is going to wonders for you all. I can't believe those docs held on on writing you a prescription....my daughter had those crazy episodes too on just two days of dexamethasone. XOXO
Link | ReplyChris Cosgrove 8 years, 2 months ago
Thanks, Vic...Your blogs mean the world to some of us who are so far away. I hope the camp was good for all five Cosgroverstreets. It's fantastic (at the minute) that you've gotten through two infusions without the hairy scary miserable 'effects'. Keep up the fantastic advocacy work. She'll be forever grateful st some point....Chris
Link | ReplyHeather McFadden 7 years, 8 months ago
Wishing you all love!
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