Kevin was devastated to take her back after only 8 hours at home. I am still in a mental holding pattern, refusing to access the parts of my brain that might lock me into a state of useless to everyone, especially Aria.
Speaking of states, Aria's mild fever was dangerous only because she now has residency in the great White-Blood-Cell-Free State of Neutropenia (state motto: Live Free, Try Not to Die).
That's right, Neutropenia is not really an '80s dance song about penises. It's the state you move to after Chemotherapy commits cellular genocide on your bone marrow.
I believe most of the red blood cells were spared, but many of her platelets left anyway, on principle. More are scheduled to move in tomorrow (before her next -- her fourth -- chemo treatment of the week).
That's right, Neutropenia is not really an '80s dance song about penises. It's the state you move to after Chemotherapy commits cellular genocide on your bone marrow.
I believe most of the red blood cells were spared, but many of her platelets left anyway, on principle. More are scheduled to move in tomorrow (before her next -- her fourth -- chemo treatment of the week).
Specifically, Neutropenia means that among the members of the eradicated race of white cells was the Neutrophil Family, who for generations have contributed to the community by eating bacteria for a living. (They insisted they are not related to the Staphylococcus aureus family of flesh-eating bacteria, but the Chemotherapy Gestapo had their doubts.)
A low-grade fever in a neutropenic patient can signal the start of an utterly one-sided battle. At a mere 100.4 (she had 101.3), you rush back to the pediatric ward (do not pass Emergency Room, do not Collect More Bacteria) for blood tests, petri dish cultures, and a massive infusion of broad-spectrum IV antibiotics.
It was a struggle to make the decision to stay home with Lyric last night. But, I wanted Kevin to get a feel for what it's like for Aria to be in the hospital for long periods. I also wanted Lyric to see that mom and dad are able to play both roles, despite mommy clearly being the most awesomest.
As it turns out, Kevin did great at the hospital. I, however, was mediocre at home. I found it harder to maintain my composure there than at the hospital. I had no clear goal (observe child, record treatments, understand doctor information, spot check schedules, etc.). And it was much harder to be the all-giving, all-understanding parent of a kindergartener whose world is going haywire. I do better under extreme duress than with mild difficulties.
In retrospect, my goal should have still been to "support the child," but somehow that's harder when the problem was whining and temper tantrums and not "please mommy, don't let the doctors hurt me."
Fortunately, the tension of it all exhausted me, and I actually slept for 6 straight hours (for the first time in weeks.). And when I walked into the hospital this morning, Aria's little cartoon voice actually greeted me (instead of scowling at me as she had in past days). She began chatting, demonstrating her rapidly developing drawing skills, and eventually snoozing on the giant fluffy puppy. And that made it all better for mommy.
Also, apparently Aria requested, and received, a hotdog for breakfast. At the hospital. Because clearly they are all about health here.
Tomorrow, after chemo, they are brining in a hair stylist for her. (No, really). Tune back in!
As it turns out, Kevin did great at the hospital. I, however, was mediocre at home. I found it harder to maintain my composure there than at the hospital. I had no clear goal (observe child, record treatments, understand doctor information, spot check schedules, etc.). And it was much harder to be the all-giving, all-understanding parent of a kindergartener whose world is going haywire. I do better under extreme duress than with mild difficulties.
In retrospect, my goal should have still been to "support the child," but somehow that's harder when the problem was whining and temper tantrums and not "please mommy, don't let the doctors hurt me."
Fortunately, the tension of it all exhausted me, and I actually slept for 6 straight hours (for the first time in weeks.). And when I walked into the hospital this morning, Aria's little cartoon voice actually greeted me (instead of scowling at me as she had in past days). She began chatting, demonstrating her rapidly developing drawing skills, and eventually snoozing on the giant fluffy puppy. And that made it all better for mommy.
Also, apparently Aria requested, and received, a hotdog for breakfast. At the hospital. Because clearly they are all about health here.
Tomorrow, after chemo, they are brining in a hair stylist for her. (No, really). Tune back in!
3 comments:
Kari, sending good thoughts from the Bay Area. I'm thinking of you, Aria and the whole family, and I know you're going to kick the shit out of this thing.
Thank you, Unknown. I do hope some major ass kicking will be going on :)
Her little face looks so sweet. She looks exhausted but I'm glad she has her stuffed puppy with her. Thinking of you guys...Anita
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