March 23, 2016, 2:20 a.m.
There is really nothing ordinary about watching your baby receive chemotherapy, no matter how many times it happens. Today was infusion # too-many-to-count, and Aila received vincristine and methotrexate. Aila has a port, and this is where she receives her chemotherapy. A port is a small plastic disc, about the size of a quarter, that was surgically placed under Aila's skin on the upper portion of the ride side of her chest. The port is connected via a thin catheter to a larger vein, but it's entirely underneath her skin. Aila didn't receive her port until the end of the first round of chemotherapy, as her white blood couldn't defend against the calamity of the minor operation. Before the port, she had a different type of central line (a PICC line), which required significantly more maintenance.
These days, every infusion visit begins with accessing her port, which involves numbing cream and masks and a needle straight into her chest. If definitely never gets easier for me to watch her suffering. And if today was any evidence, it hasn't gotten much easier for her either. She hates the needle, but she hates the adhesive that secures it even more. I swear that adhesives and their inevitable removal have accounted for a huge portion of her suffering to date. When she had the PICC line in her upper arm at LPCH, the adhesive had to be changed every week. We quickly got in the habit of giving her ativan before, and I would be sure to be by her side, holding her tight and absorbing her screams as the dressing was changed. Damn adhesives.
The movies make it seem like no big deal. Poision into vein, hair falls out, cancer eradicated. Simple and easy, with a theatrical focus on the hair loss. Don't get me wrong, the hair loss has been emotional, heart-wrenching and soul-shifting in more ways than one. But as far as I know, hair loss is physically painless. And for a 2-recently-turned-3-year-old, it's also more or less emotionally painless too. But many, many, many other things are painful, for her and for her family. First, emesis! Everyone's too fancy to call it throwing up, but that's what it is. We have basically three meds in our arsenal to combat post-chemo emesis: ondansetron (zofran), ativan, and benadryl. And I guess they give her something called kytril (granisetron) intravenously during almost every infusion as a first buffer. And sometimes this all works, and Aila is spared. No vomit! But it's hit or miss, and other times she vomits day after day after day in spite of drug after drug after drug. (And we wash pillowcase after fitted sheet after princess jammies again and again and again.)
Ok, and second, diarrhea and constipation! What I'd really like to know is the ins and outs of Kristina Braverman's bowel habits during her chemotherapy for breast cancer (Monica Potts, Parenthood, in case you don't love that show as much as I do). Maybe it's too much information for the cancerless readers, but I'm more than certain that it's not for parents of cancer kids. Aila began with constipation at LPCH which continued for some time...until the UCSF folks gave us a few additional tools in our toolbox (senna, lactulose, and erythryomycin in addition to the miralax that we had been giving her). But not before she didn't poop for eight days in a row, which led to a multi-day hospitalization and an NG-tube (down her nose) dripping Go-Lytely into her system to induce the tsunami of all bowel movements (with her father in the hospital bed with her, mind you). Go-Lyteley, in addition to potentially having the most infuriatingly oxymoronic moniker ever, is used to clean folks out for colonoscopies. So Aila, when you are 55 and ready to get your first preventative colonoscopy, remember this experience at age 3! Great practice!
Then diarrhea. And diarrhea. And diarrhea. Potty training, are you kidding me? We wouldn't even dare consider. The routine during and after these methotrexate/vincristine infusions is bolus of fluid, methotrexate, then vincristine. Port deaccessed. Sometimes we get packed up and to the car before the wild detonation occurs, but not usually. This is a blessing in disguise, as it's a lot easier to change a heavily medicated, diapered 3-year old on a hospital bed than it is in the back of a Toyota 4-runner. Which is what happened this week. I carried her (she demanded it, and am I really going to say, "No, you walk!" to the baby who just got chemotherapy? Come on!) and two huge bags (one with work belongings and one with 3-year-old hospital treats) about 1/4 mile to the parking garage and buckled her into her car seat. And then she said, "I am pooping," with a barely audible cry. And holy moly, she certainly was. It was chilly in San Francisco today, with a strong wind, and she was so cold and sad as I lay her down in the back of the truck and wiped the diarrhea that had run up out of her diaper, down her leg, and between her tiny toes.
I could go on. Pain in her knees. And on. Belly pain, mouth sores, disgust for a ton of foods. And on, but the truth is I often barely know why she's yelling and crying. She's 3, after all, and cannot tell me. But I do know my daughter. My sweet, sweet angel, who barely cried at all during the first two years of her life, except when her brother would steal her toys. Who for the first twelve months (before I kicked her out!) slept curled into me and next to me, soundly through the night requesting a little milk but never creating any to-do, almost from the minute she was born. She's yelling a lot these days, and we kind of think it's probably the chemotherapy. Seems logical? Of course, she's three, and it could be because she's three. As Dr. Kumar told me today, when I asked about things to help her when her belly hurt, "there are a lot of reasons why kids get belly aches." Probably true, for your average, run-of-the-mill Zander or Declan, who complain of belly aches once in a blue moon.
Please, universe, let me find a strength to carry on. I find myself languishing and so, so weary. This journey is so long, but she needs her Mom. There's no time for her Mom to retreat into her own tragic solitude, even if the purpose would be to try to pause and process the horror of what has occurred and is occurring. There is no time.
And then she runs around the house, like she did tonight. Wanting me to watch her as she tries to jump. She and Dec are at the same stage movement-wise, as he tries to jump (no jumping occurs!) much the same way she does. But she's so excited! And she throws her little arms forward and marches around the house, looking like a tiny soldier recovering from a battle. I am of course jubilant that she is marching around with a smile on her face, so proud of how much movement she has mastered. But I'm devastated too, if I'm honest. She doesn't deserve any of it, and none of it is just.
Comments
Becky 8 years, 8 months ago
First of all, the Monica Braverman reference here is everything. I miss the Bravermans dearly.
Link | ReplyThis is a beautifully written post (as usual). What might have made me the maddest was Dr. Kumar's comment. I just can't believe it. It sounds straight out of med school/how to deal with annoying parents 101. Terrible.
Thinking of you guys.
Chris Cosgrove 8 years, 8 months ago
Thanks so much, Vic. As horrible as it all is, reading your words makes us feel like we know and feel just a tiny bit of what you're going through from our vantage thousands of miles away. Of course we want to run and help somehow and know we can't.
Link | ReplyI loved the last pictures and will show them to Aila's great grandmother....the original Muriel....who also marches onward now closer to 105 than 104. Will also read some of today's blog to her so she has a bit of feeling for what's happening at 326 Elwood.
We love you and send hugs to all five....Wish we could be there to play w Z and enjoy the unmatchable expressions of D.
Chris
Corrie 8 years, 8 months ago
That's great to hear about Aila running around after what you've written previously!
Link | ReplyMy thoughts are with you.
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