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Last summer

Part 1: Potato Chips.

Clio is becoming a salt and protein gobbling fiend. This is a very typical side effect of the steroids she’s on (dexamethasone, specifically), and will continue to be on for this first 28 days of induction therapy. (We’re on day 12 now. So, 16 more days in the hospital. Sigh.)

We were warned that the drugs would start giving her a crazy appetite, and cravings for things she may not have wanted or even liked before. We were warned, but I think we just thought, sure, sure. That’s other kids. Not our tiny little picky little eats-like-a-bird slip of a daughter. Indeed, for her first week and a half on the juice she didn’t eat a whole lot at all.

But now it’s kicking in — and hard.

Clio is eating like a stoned frat boy. She wants chicken nuggets, hot dogs,  mozzarella sticks, french fries, potato chips, pizza and bacon. There are a few not-quite-so-bad things on her preferred menu, too: pretzels, yogurt, rye bread, English muffins, scrambled eggs, and pasta (but preferably with globs of butter or pesto).

I mean, it’s insane. This morning for breakfast (so far): 2 bowls of yogurt, two snack-cups full of shredded cheddar cheese, pretzels and two snack-cup full of potato chips.

Worse, she’s not allowed to eat fresh fruits, which she loves in real life (real life. ha.) because she’s neutropenic. That is, her “good” white blood cell count is so low that her body can’t fight off infection. So if, say, she ate a peach that happened to be bacteria-ish*, or washed with ick* water, it would be very, very bad. (*official medical terminology)

It’s really weird to hear a five-year-old demand potato chips with the cranky urgency of one of those mythical, demented pregnant women who crave pickles and ice cream at midnight. Oh, and not just any potato chips. Yesterday, she specifically requested “the kind with the lighthouse on the bag.” Jeez. Uppity, right?

We do try to offer her healthier choices. (Pretzels? Please?? Wheat crackers instead of chips? Grilled chicken? For the love of God?) But it seems to be losing battle. Especially since the other side effect of steroids is insane mood swings and irrational anger/sadness. So we’ve basically got an adorable little Jose Conseco on our hands. Fun.

I was talking with one of our favorite nurses today about how much it pains me to let her eat like this. She said she understood, because we normally make healthy choices. For a lot of parents, she said, this part isn’t as hard because this is how their kids eat all the time (just in lesser quantities). But really, she said, it’s a losing battle. And it’s going to set up a not-so-fun dynamic if we try to fight her on every request.

Our Dana Farber-trained, groundbreaking research-doing hematologist/oncologist concurred. “There will be times in the next few months when you will be begging her to eat, and when we’ll be prescribing appetite stimulants to counteract the nausea and decreased appetite that come with the kinds of chemo she’ll get.”

In other words, when she wants two Marie Callender’s frozen pizzas and four servings of Cape Cod potato chips for dinner plus Cheez-its for dessert, go with it. It’s only for two more weeks.

Part 2: Peaches

The other day I was home with Elsa and my aunt and ran out to the grocery store for a few things to bring back home (Elsa has been with her grandparents — one set and then the other — over the past couple of weeks, but now she’ll be home) and to the hospital. (See: junk food, above).

It felt very strange walking into our usual Stop & Shop, simply because it was so normal. Like, life before leukemia two weeks ago (has it only been two weeks??) normal. And normally, I’d have put together a big list with ingredients with meals for the week. And one of the girls might have been with me. And we would all eat dinner together that night. And nobody would have cancer.

In the produce section, there was a huge row of just peaches and nectarines. Beautiful, perfect, blazing orange-yellow-red summery peaches and nectarines. And I found myself suddenly on the verge of tears.

I guess because they said summer, and sitting in the backyard and juice running down our arms. They made me think of the vacation/visit to my parents in Maine we were supposed to have this very week. (Last year we did the same, and I remember eating tons of fresh peaches and blueberries and other summer fruits). I was aware that I couldn’t bring any to Clio due to the aforementioned risk of bacteria-ishness* or ick* water.

The rest of the trip through the aisles, and coming home, too, was unexpectedly difficult.

I missed the four of us, at home, and well.

 

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27 Comments

  • Danielle says:

    This made me cry. I’m sure I would have had exactly the same reaction to the peaches. And, I also love the first part of your post, your grace and humor shine through. Thinking good thoughts for you and your family.

  • “The kind with the lighthouse on the bag” now that’s a girl with gooooooood taste. Glad she’s eating like a stoned frat boy. I have one of those around most of the time….found a bag of Doritos and an empty Coke can under a couch just the other day.
    Thanks for the beautiful writing — thinking of you all often and now I feel a caught up. Hugs, love, wishes, peace, next summer: four of you with juice running down your chins
    miri

  • Amy says:

    You are such a wonderful mom and writer, Jane. Your humor and insight touch us all. I’ll be sending thoughts and prayers to your little frat star and praying for the return of juicy peaches in all of your lives very soon.

  • Kayt says:

    I’m teary now too. I’m 27 weeks pregnant, and have been seriously craving peaches. Seeing my little stack of peaches on my desk, contrasted with what you’re going through, made me cry, too.

    You guys can do this. And you will.

  • Julianne says:

    You know Jane, with alarming regularity, I meet people in classes and trainings who have completely cut themselves off from their emotions, which often renders itself as physical limitation(s). Reading your post reminds me why being a writer is a blessing: the impulse to examine the poignancy of the peaches is damn clear signal of emotional wellness and availability. How fortunate for Clio and Elsa at this time to have a mom who is keeping herself available. xoxo

  • Jamie says:

    Jane, you fill your posts with such amazing poignancy, but all couched in the reality of life-as-it-is/was/will be. There is as much power in what you don’t say as in what you do say. I am touched each time I read your words. My heart aches for you and your family. I am sending you good thoughts and small prayers to the gods of little girl appetites and mood swings to maybe cut you a break here and there.

    Hang in. There is much love coming your way.

  • You hit on the hardest and most human part of any illness or loss–the before, and then the now. I know you will be in a good, healthy “after” place with the four of you at home. I pray that happens quickly and without so much pain.

  • A tough post to read — so poignant and touching. Here’s to very-soon normal days for the four of you in Maine and at the kitchen table. xox

  • Sheehan says:

    I cannot wait for the 4 of you to sit down to dinner together. At home. And eat peaches. Thinking of you guys all the time. And hoping and longing for just normal. Lots of love being sent to you. xo

  • Sarah says:

    It’s very strange to look forward to blog posts when the subject matter is so heartbreaking, but somehow your “Jane-ish” mix of humor and grace help make sense of something so nonsensical. Hang in there, I’m thinking of you.

  • Michele says:

    Hugs. Made me cry too! Hang in there and know that your sensitivity and humor are going to do wonders for those two precious girls.

  • Korinthia says:

    At least you’re looking at a real countdown for leaving the hospital. The world inside the hospital is surreal and detached and it’s creepy when you are there so much that it develops its own feel of normalcy. Hang in there! I look forward to reading about Clio going home.

  • twobusy says:

    The “Jose Canseco” comment made me cackle out loud – at work! – and then the peaches thing made the room get real dusty, all of a sudden.

    Funny how that happens.

    Best to Clio. Enjoy those mozzarella sticks!

  • Amy says:

    There are no words to say.

    Just know that you should keep writing…we will keep reading…and be with you each step of the way. Let us be your backbone…when yours feels like jelly.

    xoxo

  • Shannon Brisson says:

    laughed. peed self (oh, Jane, must you be so funny?) wept. heart ache. heart squeeze. going to eat a peach for clio.

  • Cindy says:

    I am crying with you. And always thinking about your family – the whole lot of you – and sending you all good vibes and strength. Keep on keeping on. We’ll hold you up from here.

  • beth says:

    I had picked up your book. As a mom of twins myself (twelve year old boys + their older sister, and your husband was right — having the two babies along with a toddler was hard!), I am always eager to read other mom’s stories.

    Then I came here and found that sweet Clio is sick. But I want to tell you that I know other families who have come through the other side of this horror — whose kids are healthy and growing and annoying in all the best ways…keep pushing to that time. You WILL get there. The suck now is absolute and unimaginably terrifying. But Clio (and all of you) strikes me as a fighter. You will have that normal dinner at home.

    And I know you’re not a prayer person; I am, so I will pray, but I will also send you many good thoughts for you and your darling girls.

    You are a beautiful writer, and though that may not feel like much now, when Clio is older and wants to understand everything she went through, she will have this lovely and poignant record of how you love her. Hang in there.

  • Katherine says:

    You probably have no idea how affecting your writing is and how many lurkers read your posts and are so moved by them. Your girls have such a unique and exceptional mom. You WILL get through this. You are stronger than you know.

  • Kathleen says:

    Oh, Jane. The essence of summer is so contrasted by the nastiness of what you’re all enduring. I wish I could hit fast-forward and get your family to two summers from now…all healthy, enjoying soccer, peaches and beaches. Giant hugs and warm wishes.

  • Isabelle says:

    Laughter and tears here too. Such a beautiful post. I agree that your girls are so lucky both to have such a fantastic mom and to have such an amazing record of their early lives, so beautifully written. Wishing you continued strength and humor (they go together I think).

  • Nicole Branley says:

    My husband and I are crying in our kitchen as I read this aloud! Thank you for your brilliant writing. This has made me feel so part of your journey. I hope you and your family know how much we are all thankful for your blogs and updates and posts, etc. I hope it makes you feel close to us as it makes me feel close to you. I think about Clio all day as I look at my daughter, her friend. We pray for Clio at bed and in church, Jesus, I’m praying constantly! We will talk soon to get some play time for Elsa. God bless the four of you!

  • Polly says:

    Beautifully said. So much insight in the midst of your chaos.

  • Jillian says:

    I’m boycotting peaches.

  • Christine says:

    Hang in there Jane!! I love your humor and how your writing seems to bring us all with you. Here’s to peaches next summer and hugs to your little girls!

  • Deb says:

    I am a huge fan and this made me cry. I have a 5.5 year old and 9 month old and I beg God that this doesn’t happen to my family, while also begging God to stop it cold in its track in yours. Keep writing. We are with you! I’m with Christine above – here’s to peaches next summer and hugs to your little girls (and you!)

  • April says:

    Just do whatever you need to in order to get through the day. It will be okay. Glad you will be out of the hospital soon.

  • Dawn says:

    I don’t have anything profound to add here, but just want to let you know that I’m thinking about you and praying for your whole family, Jane. <3