March 10, 2016, 1:07 a.m.
I've literally lost count.
And I just this very second realized that I need to work on a to-ask-for list for Brian and Aila when they head to UCSF for her chemo visit tomorrow afternoon. And I thought, why not plan this visit on the blog (with some annotation, of course)? So I guess that I'll write what I planned to in my note to him (he is sleeping behind me aside the tiny cancer patient).
Title: Things to ask Dr. T. Nicolaides (Important: Nicolaides was the Attending on the inpatient unit for the majority of our last 13-day stay, the one whom we argued with about their keeping her there and with whom we eventually stopped fighting, with hope that another Attending would relieve him soon and let her go...which happened.)
Attitude to present to Nicolaides, as requested by your wife: Informed, but deferent. Humble, but forceful. Impressed, but not so much. Human. (Important background: Nicolaides and Brian got in a stand-off squirmish on Day 2-3 of her last hospitalization. I agreed with everything Brian said and felt--basically that this stay was predicated on MD fear that something bad "might" happen...but that nothing bad was "actually" happening at the time." But nevertheless, we remained in the hospital for another 10+ days (in spite of my best psychological maneuvering), and at least a few of those days were a result of the initial power play. Which for the record, I love my husband a little bit more because of it.)
Goals:
1. Get Nicolaides to test her stool sample for c-diff. (FYI: We packaged her latest loose bowel movement today in a neat Ziploc, ready for analysis. Her brother Declan has been sick and unruly for the better part of the past two weeks since she returned from the barn, and we'd like to understand why. She has vomited every night of the last 9 save two, often gasping on her vomit from her slumber. And her poop.....we will not discuss here, for fear of scaring off readers. We are afraid to provide full disclosure, since it seems the only card anyone plays is hospitalization.)
2. Get ativan prescription. (Note: When we request ativan, they assume we are attempting to drug our daughter. Which is interesting, of course, since they are drugging my daughter with force.) The ativan is for nausea, per their prescription. And clearly (vomiting multiple times a day for more than a week), she has been nauseous. But whenever we ask for it, we always sense this underlying sentiment along the lines of "oh, those parents, they really just can't get their sh&t together to take care of their sick child." An entirely separate post is warranted about this topic, but suffice it to say, ativan helps, in multiple scenarios.)
3. Get oxycodone prescription. (Huge: So keep in mind that when Aila feels pain, we cannot give her Tylenol or Advil. The argument against Tylenol is that it masks a fever. And Advil may mess with blood counts. So both are off limits--even if we think that's kind of ridiculous since it's assuming that we, as her parents, are totally out of touch with her clinical condition and the effects of any medications. But I digress. Oxy is our only option, as least as far as what has been offered to us at Benioff. And she is so frequently complaining of pain! During the first 4+ months post-diagnosis when she was a 2 1/2-year-old infant again, without the ability to walk, we used it more and more as we realized how much it could help her with her pain. At first, it felt awful to be giving our daughter oxy. But she felt better--maybe physically and maybe emotionally--and regardless, she learned to walk again. Her current walking is still pretty impaired, though. She locks her knees during every step, which inhibits her stability. The past two weeks have been especially bad, probably as a result of 14 days hooked up to an IV pole in the hospital and new joint pain since last week's vincristine. She complains frequently of leg and ankle pain.)
4. Ask about relapse. (Wow: I can tell from our conversations ove the past few days that Brian doesn't really relish this task, and I won't be angry if he can't do it. But I think it's time. I want to know what the likelihood is, as I know many ALL kids will and do relapse. We also think that we will get a slightly different estimate from every provider, so I think we should ask everyone we see for the next few months. I've looked in the scientific literature, but it's not clear, and I can't tell. I want to know what the current thinking is, among pediatric oncologists. Good lord, we already lost the world's biggest lottery, and the odds of relapse are WAY better than were her odds of leukemia in the first place. So give it to me. I can take it. I have no other choice!)
And then after all of the to-dos, I would write something caring about our lives, which continue to sound like a strange episode of the pediatric verison of Days of Our Lives or Guiding Light. Would thank Brian for shifting his meetings for the day, as we have both done countless times by this point, to be with our baby girl. Probably, I would express some of my guilt, that I am a mother who is working while my baby is getting chemo. So selfish, so selfish. But then, I would write how much I love them both. And how lucky I was to meet Brian. I would mean it all.
Aila, Zander, and Declan, have some mercy on us (please?) when you finally read this...and really comprehend it...in your young adulthood? Your parents are making it all up as we go along. No guidebook. In fact, no one official to really talk to at all, unless it's about hemoglobin or neutrophil counts. I'm biased of course, as a psychologist. But really, doesn't anyone realize that her leukemia has changed every single thing, forever?
And just like that, the next day begins...we will be there for you, sweet babies.
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