The ‘Roid Routine

DexEvery three weeks, Clio starts a new treatment cycle.  It’s been this way since November 2012, and will continue to be this way through July, when she’ll finish treatment.

A key ingredient in each treatment cycle is steroids. (Dexamethazone, specifically.) Last year, she got insanely high doses of it; this year she gets a third as much. And although this means she isn’t nearly as tired or uncomfortable — and doesn’t miss school, like she used to — much of our steroid routine remains the same:

1. Steroids. (Obviously). We have the medicine in liquid form, which we mix with apple cider. We put it in one of the girls’  monkey or pig cups, with a straw. It used to be an excruciating, drawn-out process to get Clio to drink it all down. For a while, I had to do a “sip for sip” thing with her. Every time I took a sip of my seltzer (or wine, depending how miserable the day had been), she had to do a sip of steroids. Now, she sucks the whole thing down like nothing doing. Amazing.

2. Pasta. This is the thing Clio craves most when she’s on steroids. Well, actually, she’d have it for dinner every night, all the time, if she had the option — which she doesn’t. But we indulge her pastaphilia during treatment weeks, because to resist is pointless. Especially now that we’ve established a precedent. Clio is a creature of habit. And while on steroids, she’s a beast of habit. You don’t fuck with her routine. And you don’t bother trying to convince a kid whose taste buds and appetite are out of whack to eat their vegetables. Because you will go stark raving mad.

Ravioli

So, she can have pasta once a day when she’s on steroids. (Last year, it was twice.) She went through a tortellini phase, and she occasionally gets a hankering for mini-shells, wheels, or elbow macaroni  (she insists that different shapes of plain pasta taste different), but these days it’s mostly ravioli. But not just any ravioli. No ho ho ho. She wants Stop & Shop brand frozen spinach and cheese ravioli. (At least it’s cheap!) And there’s a ritual to preparation: She gets to stir it once it’s in the boiling water, and then test it when it’s almost done. Serve with butter, no sauce, please.

3. Couch eating. We relax the rules on eating on the couch during steroid weeks. For both of the girls. But we draw the line at yogurt.

4. Air mattress. Last year, when Clio’s treatment cycles included higher doses of steroids and chemo, she had to go the bathroom really frequently, her legs hurt a lot, and withdrawal from the steroids was incredibly painful. So we set up an air mattress on the floor of the girls’ room so she wouldn’t have to climb up and down from her top bunk. (Before you ask: No. Our idea of having the girls switch bunks during treatment weeks was a total non-starter.)

The bathroom issues / pain aren’t nearly as severe this year, but we still do the air mattress. I think it feels sort of extra-cozy to Clio.  Sadly, the thing now has a slow leak somewhere thanks (we think) to our highly destructive kitten. He must realize that we only have a few more months to go.

5. The Border Cafe. (Sigh.) The Border Cafe is a Tex-Mex-Cajun restaurant with a few locations in the greater Boston area (and maybe elsewhere?). It is Clio’s favorite restaurant. Rather, they have two menu items that she loves: Cheese quesadillas, and the Border’s addictive, hot, greasy, all-you-can eat homemade tortilla chips.

We made the fateful error of taking her there once when she was on steroids — the Harvard Square location, which is closest to us, and to Club Passim, where Alastair frequently performs — and that was it. She started begging (crying, weeping, yelling, etc.) to go every time she was on steroids. Eventually, we folded. It makes her so happy — and she’s so unhappy otherwise while on treatment — that now either Alastair or I or both of us just take her once every cycle. She even wrote the place a fan letter. Seriously. (And they were kind enough to send us some meal vouchers as thanks.)

But admittedly, we’re not particularly happy about this ritual. The chips are so irresistible in their glistening, salty unhealthiness, I probably down about 800 calories worth of them before our meals even come. And while the rest of the food is fine, it’s heavy, and one can only eat at the same restaurant so many times without getting sick of it. I daresay I will not miss this aspect of the ‘roid routine, nor will Alastair or even Elsa — although she does like the burgers. And the chips. Those chips!!

Here we are on our most recent trip:

GirlsAtTheBorder

 

ClioAtBorder

 

ElsaAtBorder

6. Saintly Patience. This is what is required of Alastair and me (and poor Elsa, to some extent) when Clio is ‘roiding out. Again, it’s not as bad now as it was on the high dose steroids. But still: For a little under a week out of every three, Clio is not Clio. She is a fragile, needy, cranky, moody, short-tempered, sluggish version of her usual self. Her usual OCD tendencies (which I won’t get into here) are much worse, and she really seems to suffer for them.

I can tell she doesn’t want to act or feel the way she does. But she does. And it is really, really hard to be around. Hard to know when to draw lines and when to ease them. Hard to know what’s your kid just being a pain in the ass kid, versus what’s your kid whose body and brain are addled with drugs, versus what’s your kid trying to push the boundaries of what she can get away with, knowing that she has an excuse. Hard to stay calm and detached do when your kid is screaming at you and then insisting (screaming) that she isn’t, and then if you try to tell her sternly that what she’s doing is not OK, or you tell her to go to her room, she screams “but I can’t help it! I’m on steroids!” Hard not to scream back.

7. Ah, but Cuddling.  One of the nicer parts of steroids is that they make Clio want physical closeness with me. I think it’s partly because she feels lousy, and kids naturally want more mama love when they feel lousy, and partly because of the mood-altering effects of the steroids. Sometimes it’s difficult, like when she desperately wants me to cuddle on the couch with her but I really need to be cooking dinner or cleaning up or working. But as much as I can, I try to be there for her. Because she’s my baby, and I love to hold her and rub her back, and I want to give her as much comfort and security as I possibly can as she endures this crappy routine.

Opie likes to get in on the cuddling game, too.

(Opie the kitten likes to get in on the cuddling game, too.)

 


Tags: , , ,

22 Responses to “The ‘Roid Routine”

  1. Lucy B. says:

    Been on them myself for respiratory failure after flu–as an adult–and know the crazy mood things they do. But when necessary they make the difference between, well, living and the alternative. Now I’m going to make some ravioli. With sauce.

  2. SarahB says:

    That is the cutest little kitten photo in the world!

    And what a great post. I think routine and ritual helps getting through any tough situation. There’s something good to count on when there’s also bad.

  3. April says:

    She looks SO happy at the mexican restaurant! So cute I can’t stand it. haha

    I can kinda get you on the not knowing where to draw the line when she is being grumpy because how much is from the steroids and how much is normal misbehaving kid behavior. We struggle with that with Harrison sometimes. Is this autism causing this or just him being a jerk. Most of the time we can tell the difference. You see it enough you get used to it and can call it. Sometimes we mess up. Those are the times that make you feel like a terrible parent. :( The guilt!

    On a good note, There is a little boy that dances at Eric’s studio and he went through some kind of cancer treatment when he was younger and he is a wonderfully behaved sweet teen now. So don’t worry about it ruining her to spoil her some. Its okay. It will work out in the end!

    hey and at least her ravioli has spinach in it. That is a vegetable!!! I call it a success when I can get the boys to eat alfredo noodles with the tiniest bit of broccoli in it. Like just almost invisible bits. Hey that might add up to like one bite of real broccoli right?! right?!

  4. Korinthia says:

    July sounds so not impossibly far away. Enjoy the cuddles and hang in there.

  5. Ruth says:

    My youngest has been on steroids for asthma flares … MUCH smaller doses than Clio … and I always dread it. They’re just the worst!

    I’m glad you’ve figured out how to get through. Routines are very comforting.

  6. Valerie says:

    Yes, yes and yes. Ruby is in the midst of her second to last steroid week now. She said she was feeling intense today. That’s exactly how it is – intense anger, intense fatigue, and intense love. I’m talking smushing her face scarily into my face, “love” pinches, and sneak attack hugging. On the flip side, she has also told us that she can’t control her screaming… Ruby takes the dex with a little milk, and calls it “spicy milk”. She loves it, strangely enough. She’ll be doing shots with the best of them come her college years!

  7. Liz says:

    It sounds like you all have a handle on it, although not something you want to have a handle on.

    I do have to add, I love Border Café. Their Gulf Coast Enchiladas are as addicting as the chips. The Margaritas are pretty awesome too.

  8. Ewokmama says:

    Steroids suuuck. Blech. For the most part, though, the lower doses after the first two phases of treatment haven’t caused nearly the same mood swings and cravings in Jack. I kinda wish the cravings would have stuck around, to be honest, because he is so darned thin.

    And wow, July! I’m jealous that Clio’s treatment is so close to ending! Yay for you guys!

  9. Catherine says:

    The first time I was on the ‘roids as a kid, I was impossible to live with- moody, hangry (hungry/angry), depressed, just miserable. The second time, post-transplant, they made me almost entirely jolly- like crack up for 5 minutes straight over nothing jolly-though still very hungry. Good coping skills are key! Here’s hoping July comes VERY soon- and that you have a HUGE party planned.

  10. Robin says:

    I have to admit I can’t blame her on wanting to eat at the Border cafe. They do have amazing chips and salsa. :)

  11. Lune says:

    Possibly a stupid question: is there a reason Clio can’t have the ‘roids in pill form? I don’t have kids or cancer, so I seriously have no clue.

    But as someone who has BTDT with intense hurting, holy wow, does that feeling of being cradled help. I’m getting a memory foam mattress in hopes it’ll ease some of the usual musculoskeletal ouch. The first time I ever slept away, I rigged up mattress padding out of a mattress pad, a duvet folded in half lengthwise, and at least one egg-carton foam thingie. Don’t know how I kept it all together. Bungee cords?!

    tl;dr You continue to be awesome.

    • Jane says:

      Not a stupid question at all. I assume the steroids could be taken as pills, but when Clio started treatment at age 5 she hadn’t learned to take pills, so she had to take them in liquid form. (And actually, she still hasn’t learned to do pills. We haven’t bothered trying to teach her, since all of her meds can be taken in suspension form.)

      • Lune says:

        I was not acquainted with pills until age 7, but when I learned them, I enjoyed them way more than suspensions. Then again, I’m picky + also very sensitive to taste, so given the choice between “blech” and swallowing something a little larger than a Tic Tac whole… yeah. :) If she’s cool with the way of things now, no reason to upset her apple cart.

  12. Laurie says:

    Border Cafe use to be in our area. I was sad to see them leave because they had the best Sangria Swirls.,they go great with those chips!

  13. Kathleen says:

    I love that if you “error” at all (which I almost hate even typing), it’s on the side of love. I love that you know that her cravings and routines are be a huge source of comfort to her, so you allow them.

    PS- Saw your dress online and thought it was gorgeous. You will look stunning!

  14. Stephanie Clohesy says:

    How lucky for Clio and the whole family that you can reflect and sort it out like this, Jane!

  15. Cindy Reardon says:

    Let me tell you from personal experience, when on steroids every meal MUST contain a lot of carbs! Greasy carbs are the best! Best wishes to Clio and lots of pasta!
    Cindy, cancer free for 12 years now!

  16. Cara Burrell says:

    We start our ‘roid cycle tomorrow… Sigh. I just realized tonight that I haven’t stocked up on pasta and soft pretzels! Good luck to you!

  17. Hello there, I discovered your blog by means of Google whilst searching for a related topic, your website came up, it appears to be like good. I have bookmarked to my favourites|added to my bookmarks.

  18. Virginia Grosso says:

    I am so sorry for your little girl. My beautiful daughter too was diagnosed at age 5 with ALL. It was right before Christmas in 2001. Keep your hope going – never give up! May your family be blessed with her remission. Cuddle her, hold her and love her like you’ve never loved before. May she have the strength to deal with this horrible illness. I feel for you, her and your whole family.

  19. Virginia Grosso says:

    P.S. My daughter went through the same things when she was on steroids. It was horrible for her and the cravings were crazy big. Believe me they really play with their emotions. We have trouble handling their protocol when they are on them. So you can’t imagine how horrible it is for a little girl to not know how to deal with those feelings. Again, I am so sorry for your struggles and pain.

  20. Vivi says:

    My son Enzo is 3 and was diagnosed with ALL on January 6, 2014. He just finished his first round of steroids two weeks ago. Everything you shared is spot on! Enzo would cry for pasta at 5am. He was obsessed with rice, pasta and all chips…especially tortilla chips. I’m happy to say that his last biopsy showed he is in remission, but we have a long 3 years to go. Your daughter is adorable. She reminds me so much of Enzo and the steroid cheeks that he still has. Thank you for sharing.

Leave a Reply