113 Days to Go
Whether or not your child gets cancer? Random. Whether or not your child handles chemo well? Random. Whether or not your child relapses? Random. So when you find something --- anything --- over which you have a smidgeon of control, you manage it and feel smug about it. Since Kendrie was diagnosed and started chemotherapy, some 679-odd days ago, Blaine and I have taken total and complete control of her medication. And, if I do say so myself, we’ve done it well. She had never missed a day or a dose of meds; she had never missed a doctor’s appointment; and I can count the number of times on one hand that we’ve fudged the “no food or dairy two hours before bedtime” rule since entering long term maintenance. For anal control freaks like us, it was a pretty good record.
Then, imagine my dismay when I went out of town last weekend, only to receive a call from Blaine on Saturday morning, while he was standing in the Eckerd’s pharmacy waiting area, to tell me that not only had she run out of .5 mg dexamethazone (steroid) ….. but the prescription had also expired the day before …. AND, to add insult to injury, Eckerd’s couldn’t even float us the four pills we needed until Monday because they were completely out.
You have to understand that Blaine and I have a very clear delineation of duties when it comes to chemo meds. He holds her still; I give her shots. He marks the medication chart with a highlighter each evening; I sneakily check over his shoulder to make sure he’s doing it right. He gives her the oral meds; I am responsible for making sure all prescriptions are refilled in a timely manner. So the sudden, unexpected Eckerd’s-steroid dilemma was all me, baby. Ugh. Call the engraver; the Mother-of-the-Year Award has slipped through my fingers again. In all seriousness, I was pretty upset about it. What kind of loser doesn’t check to make sure her daughter has enough chemo before going out of town???
Here’s where the treadmill started: Her methotrexate is on a 30-day auto-refill cycle and we get double what we need each month. Despite telling Eckerd’s we have enough methotrexate pills to take care of *several* chemo kids, for about twenty years, they keep filling it each month. Fine. Whatever. I had double-checked her Claritin, which was fine, and already refilled her Singulair that week. She had plenty of her other steroid, the 4 mg. I noticed before I went out of town that she was running low on Zofran, but only one pharmacy, way across town, carries the dissolvables, so I decided to fill that one later, since that same pharmacy across town is the only one that will flavor her liquid Bactrim and she still had two weeks worth of that.
So, back to the steroid delimma. Monday morning first thing I called her nurse and explained what I had done wrong, fully expecting her to report me to Child Services for neglect. I had already done the math --- Kendrie gets a total of 5 mg of steroids each day, for five days each month, for 17 months of long-term maintenance. So, thanks to my carelessness, Kendrie had missed .04 percent of her total steroids. Seeing how small the number was made me feel slightly better about my total lack of parenting ability …. The fact her nurse told me to “Get a grip, you dork” made me feel even better. (Footnote for chemo parents: .04 percent is NOT enough to negate the ‘roid rage of the month, just fyi.)
After calling the doctor and the pharmacy and getting the prescription refilled, and deciding that maybe, just maybe, I’m not the worst parent on the planet ….. after all, there are so many different meds, given at different amounts at different times on different days in different increments, really, it’s probably ok to cut myself some slack, right? Then, Blaine climbed into bed last night and the last thing he said to me before falling asleep was, “Kendrie’s almost out of 6mp …. And Eckerds called with another methotrexate refill …. Can you take care of both those things tomorrow?”
Ah, it’s good to have a purpose in life and be needed again . But I'll admit, I’m excited for this treadmill to stop. Counting down, less than four months to go!
Once again, thanks to all of you for the kind notes about Kendrie’s school, hair and clothes. I was thrilled tonight when she agreed to let Blaine buzz the ring of fuzzy hair around her ears and neck off. Now, she’s got the little duckling fuzz all over and it looks SO much better. In fact, I find myself kissing the top of her head obsessively, just to feel how soft it is, and some total stranger at school today, a fellow student that Kendrie had never seen before, came up to her and started rubbing the top of her head. Maybe he had a math test and needed luck, who knows?
But I was inwardly congratulating myself on raising a child who has the ability to overcome her own (and other children’s) perceptions about how a little girl perhaps *should* look …. A child with the self-confidence to be herself …. The poise and assurance that how she looks is both beautiful, and no-one else’s concern ….. So imagine my surprise when she told me tonight that she couldn’t wear her green t-shirt tomorrow because “Well, you know, Nicholas really likes me to wear shirts with pictures on them.”
Great. Now she’s taking wardrobe instructions from her 5-yr old boyfriend? Maybe she’s not quite as poised as I thought she was.
Thanks for checking in …. In the meantime, looks like I’m off to Eckerd’s.
PS. One of the fun things I got to do this weekend, besides place my daughter’s health in jeopardy with my inattention, was meet for the first time some fellow ALL-list members, Donna, mom to Molly and Billy, and also Michele, mom to Brendan. If you had told me a few years ago I’d be not only meeting people I “know” only through the internet, but having a total blast doing it, I would have said you were crazy. But it’s amazing how much you can have in common with a relative stranger when you’ve faced some of the same challenges. So, Donna and Michele, I had a marvelous time hanging out with you guys and want to say Thanks for welcoming me into your lives!
Take care,
Kristie
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KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My dad kept coming after me, prompted by my mom, with his clippers. Since Kellen was getting his buzzed, I decided to let Dad do mine, too. What is this world coming to when a beauty like myself gets her hair done, standing in the garage with a towel draped over her shoulders, by her dad???
BEST PART ABOUT HAVING CANCER TODAY: At least I won’t have to listen to my mom’s not-so-subtle hints about my last little ring of hair anymore.
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