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Disconnected Scenes

Everyday is an incoherent, disconnected series of scenes.

Scene 1: Arrested apologies

I find myself not apologizing a lot. It feels wrong each time.

Sometimes it’s because you know that person will tell you not to apologize. Like when you can tell the doctor is just putting on a good front when Thea gives her the stink eye, yells “NO” and points to the younger nurse instead. I’m sorry she’s not herself. I’m sorry she’s being rude to the people saving her life.

Sometimes it’s because you’re just tired of issuing the same apology. I’m tired of smiling at her plump, orange-dusted cheeks and telling someone, “She had never tasted a Dorito before leukemia,” or “Yeah, actually, the doctors tell us to pretty much let her eat whatever she wants.” I’m sorry for putting unacceptable amounts of junk in my child.

Sometimes it’s because I shouldn’t have to apologize. Like when I ask a doctor something they don’t know the answer to. “So the lab result that determines the next 8 months is just 0.2% over this critical threshold. What are the chances the actual measurement is below the threshold? Should we repeat the test?” I’m sorry I’m questioning your expertise.

Scene 2: Netflix would say, “Well, parents should be supervising”

Thea’s never watched enough shows for this to matter before (← there's an apology in there), but it’s frustrating that Netflix doesn’t allow you to hide shows from the Kids menu. It puts us in the position of saying “no” and risking a blow up that could be avoided entirely. Shows we 👎 are still recommended. We, as parents, believe the characters in PJ Masks are being voiced by people on high doses of dexamethasone. We got plenty of that in this house already.

Scene 3: The team mounts a fight against depletion and we imitate normalcy

Liz, Sam, Veronica, Katie, and Mike plan a birthday bonanza for Beck. Beck gets away for a few hours at a time and feels like a human being. We get a date night. I take Thea to chemo without Beck. We carefully take Thea out of the house. We carefully undertake a limited halloween. The Doritos start to show up in the cheeks, not just on the cheeks. I'm not the only one in the house with a respectable midsection anymore.

Scene 4: Beauty, Worst Birthday Ever, Plague, and FML

“When is my hair going to fall out? I don’t want it to fall out. That’s not beautiful.” I curse every time I or others made a comment that thoughtlessly equated her worth with her beauty.

“Well, T, when I lose my hair do you promise to still see that I’m beautiful?”

“Yes Daddy. When I lose my hair will you still see I’m beautiful?”

“Of course love.”

To our horror, the real answer to her first question is, “You’ll start losing your hair when, on mommy’s birthday, we discover the whole family has lice. Since you can’t use the chemical shampoo, your hair will start coming out when we have a lice specialist comb your hair for two hours. You’ll scream at the constant pulling. Mom and dad will WTF over how this is possible while maintaining a highly sanitized home and isolating you and Siggy from other kids. The specialist will tell us it looks like it started four weeks ago. Rebecca will remember the three days of pre-kindergarten classes you attended, pre-diagnosis. Rebecca will remember the kids all laying next to each other on the floor at nap time.” That’s the answer. Sigh.

*Moment pictured is not a representative moment

We went ahead and apologized to all family that’s been in our home for these last three weeks. It’s like, you’ve given so much to us, and now we might have given something to you. Thanks Frieds and Mimi for doing 48 hours of straight laundry.

Mommy’s birthday actually started off with a lesser drama: Siggy, whose life is full of double standards, was given an answer she did not appreciate at 7AM. She flipped Mommy’s birthday cake onto the floor to make her point. This family will be seeking some therapy.

Yesterday I got all motivated about that self-care advice and decided to pursue some exercise for the first time since Thea’s ER admission 26 days ago. I drove Siggy to a mild hike nearby, tossed her in a backpack and we had a great outing.

Four hours later I’m lying immobilized in a hot bath. I appear to have acquired a nerve issue or something that causes my left middle back to spasm when I use my arm, probably from the hike.

Scene 5: A typical day in the CPMC oncology basement

We go twice a week. To prepare, we:

  1. Select a gift from one of you. We've been hoarding most of your gifts for these visits.

  2. Queue up a few of these awesome PreSkool Cribs episodes you've been making us.

  3. Squirt numbing cream on her port, and use Press 'N' Seal all around it. No, this is not just some "good idea" I had, it's the official process.

We arrive in the basement clinic and she gets her port "accessed". First they take blood labs. The results tell us whether she needs a transfusion. They include her neutrophil count.

If the labs are good, they inject vincristine. Vincristine is a common chemo drug that's toxic to skin, but somehow OK to shoot right in. The nurses don a variety of sheathes to avoid accidental skin contact.

Her genetics had mixed results: Some favorable, some varied. We're hopeful she'll be considered in the standard risk group, which has 5-year success rates around 90%, but we won't know for sure until around November 18ish. She's not eligible to be considered low risk.

The best thing about this scene is the dark cloud of common chemo side effects she's NOT having like nausea, constipation, or bone pain. She's even starting to tolerate the steroids. The Mage of Rage strikes at a manageable 6X daily. Typically for under 10 minutes and 98db. Intrafamilial beatings are down 60% from peak. Afterwards she's full of apologies she doesn't need to be giving.

Scene 6: A happy rage

Sometimes the Decamonster shows up maniacal and intoxicated, full-belly laughing until she's out of air. Last night Frieds decided to mock the Decamonster. This episode ended up with Thea clutching herself on the floor.




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