A Zillion Down, Three to Go.

10171727_10202834606199352_4874946374475899127_nYesterday marked the end of Clio’s fourth to last round of treatment. Only THREE MORE LEFT!!

What does this mean?

Only three more doses of vincristine. This is the stuff largely responsible for the fact that while Clio’s got lots more hair than she did when she was getting doxyrubicin, it’s still pretty thin and not growing very fast. I expect her to be sporting a luxurious mane by Fall! Vincristine is also responsible (we think) for the fact that Clio still can’t walk or run at her pre-cancer speed, and her gait is a little funny when she does. Her Olympic track and field training will commence in August.

Only 12 more weekly doses of Methotrexate. Three of them, she’ll get at the clinic when she gets her vincristine. The rest, I administer myself at home. Since last summer, two weeks out of every three, we get a home visit from a nurse, who accesses Clio’s port, draws blood for labs, and leaves the port accessed. Once Clio’s lab numbers come back, usually the next day, I get the go-ahead to give her her Methotrexate. It’s delivered from an infusion company, along with syringes full of saline flush and heparin and gloves and alcohol wipes. And I get to play nurse.

The process made me insanely nervous at first, but now it’s become second nature: Alcohol wipe, saline flush, alcohol wipe, chemo, alcohol wipe, saline flush, alcohol wipe, heparin lock. In fact, the hardest part is getting the damned dressing off the port needle at the end. (Imagine having to peel the world’s biggest, stickiest bandaid off your child’s chest. Oh, and the band-aid is covering a needle that pokes into your child’s skin.) Then I pull out the port needle — still sort of scary — and off she goes.

The big box o' medical supplies

The big box o’ medical supplies

Only 42 more doses of 6MP. I give this to Clio at bedtime, often after she’s been asleep for a couple of hours, because it has to be given on an empty stomach. Sometimes she doesn’t even wake up, and I just gently squirt it in while she’s half asleep. There have been some funny sleep-talking and sleep gesturing incidents with this. Last night when I gave it to her, she kept holding up two fingers. I’ll take two doses, please? Peace? Victory? Who knows. I just play along with it. “OK, two. Down the hatch, sweetie. Peace, man.”  It’s actually sort of cozy. Maybe in some weird way I’ll miss the 6MP.

And — PRAISE GOD — only three more rounds of steroids. These I will not miss ONE IOTA. This has been, hands-down, the worst drug of all. (With the twice-weekly, big-ass needle-in-thigh Asparaginase shots last year a close second — shots which, by the way, cost $30K each for some ungodly reason. Thank God for insurance.)

It’s hard to express just how completely steroids transform Clio’s mood and behavior (which is probably why I’ve written about it, like, two hundred times here. sorry.). She becomes so cranky, so fragile, so sensitive, so needy, so obsessed with food…it’s astonishing. I’m sure if you hooked her up to some kind of biofeedback machine during steroid pulses, her stress levels would be through the stratosphere. As would mine.

What makes the steroid cycles even worse is how miserable they make Elsa by proximity:  First of all, Clio’s neediness — whether the need is food or cuddling or some obsessive compulsive need or complaint — means Elsa loses out on parental attention. Then, there’s the fact that Clio (through no fault of her own) gets totally pissy with her. So Elsa is pissy back. A fight between a 7 year old on steroids and a 7 year old who’s isn’t is absurd. And not in a fun, Marx Brothers sort of way.

Finally, because our activities during steroid rounds are limited by Clio’s inability to go anywhere or do anything much more than  watch TV or be read to or sleep, Elsa gets stuck at home too. (I’m speaking primarily of weekends, here — and weekends are when the cycle peaks.) If Alastair is around and one of us can go out and do something with Elsa while the other one stays with Clio, it’s better. But he frequently gigs on weekends and sometimes (like this weekend) travels, so it’s just me and two very cranky little girls, stuck in our house. UGH.

Oh yeah, and as I’ve mentioned, on steroid weeks it’s become a ritual to go to The Border Cafe. (Which Elsa is now completely sick of.) This part’s not SO bad. It would be better if they had any decent wine there. Although that would probably make me eat even more of the damned chips.

Did I mention I hate steroids?

Of course, there are all kinds of other emotions tangled up in the fact that Clio’s treatment is about to end, which I’ve written about here before and will write about again. But today, having just made it through another round of steroids, the only thought on my mind is HALLELUJAH!

PS — Go congratulate my pal JulieSue, whose son is on the same schedule as Clio, and also on the final countdown.


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8 Responses to “A Zillion Down, Three to Go.”

  1. Maggie May says:

    I am so glad to hear this. I remember when you announced her dx. Her smile would never leave me guessing she is ill!

  2. Kris says:

    When I first started working with kids with cancer, I never would have guessed that I would tell parents that steroids are very often the worst part of treatment. Sometimes it’s hard for me to deal with the crazy moods and insane hunger of my patients, so you parents who have to live with it 24/7 during those cycles have my utmost respect!

  3. SarahB says:

    Wonderful news–so close to the end. And yet, transitions are hard. I’m looking forward to hearing about your new post-treatment normal as you figure that part out. Hang in there.

  4. Stephanie says:

    You write so well, and I’ve followed your family’s story for a long time (since your pregnancy, in fact!), but this post made it really hit home for me how massive of an ordeal this has all been. You made me understand cancer and its extreme suckiness in a way no one else has. Anyway, long way of saying, I’m thrilled you’re at the home stretch now, and all the best to all of you. Also, as a way of celebration, please buy those shoes you posted on Twitter. I will donate to a kickstarter for them if you want! Can’t imagine a person more deserving of fancy shoes than you. :)

  5. Ewokmama says:

    YAAAAAAAY! The final countdown (the song is totally playing in my head)! The end is in sight!

    We are in it, too – Jack has 3 more doses of vincristine but his are more spread out than Clio’s (every 12 weeks). And unfortunately he has 10 more rounds of steroids…boo!

    Are you guys going to have an end-of-treatment party?

  6. Kathleen says:

    We just might buy a bottle of champagne to toast you all from afar when she’s officially done. I’m so glad the end is near.

    May the road rise to meet you!

  7. Deb says:

    when my daughter took vincristine it made her hallucinate. she saw things that were not there, (like swearing her doctor was standing in the doorway – he wasn’t), she talked to people that were no where to be found, and she ate food (or acted like she was eating food out of bowl) when there was no food in front of her, she went on trips (and told us all about what she saw and did) when she hadn’t left the house (some of it we had to laugh at), but the worst part was she kept telling me she was dead, and just watching all of us! I knew it was the drug talking, but that used to get me so upset!! Those chemo drugs are hell, and they put us through hell. I wish with all my heart there would be no need for them, but thank God we have them!

  8. It has been such a crappy little boat ride, but you’re almost to the dock!

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