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LeukCellsMultiple times a week, people who know about Clio’s cancer ask me how she’s doing. And I truly appreciate their asking. I’m just never quite sure how to answer.

I mean, I know what words to say. (Me writer! Me know how use words!) I say she’s doing well, chugging along through her treatments. Or I say that most of the time she feels really good, and is running around and playing like an ordinary kid, except for one week out of every three, when she gets a big load of chemo and high dose steroids. (Speaking of which, we’re just starting another round right now. It’s day 1 and I’m already on the brink of jabbing a fork into my liver.)

But I think what people are really asking is: Is she getting better?

And the thing is, I have no idea.

At the beginning of Clio’s treatment, we had milestones to mark her progress. Eight days into induction — the initial, intensive treatment stage for childhood ALL (Acute Lymphoblastic Leukemia)  — if there are no lymphoblasts (i.e. leukemia cells) visible in your blood, it’s a good sign. You’re considered a “rapid responder.” Clio was.

Then, at the end of induction (29 days, in our case), they do a bone marrow biopsy, and if there are no detectable leukemia cells there, you’re considered in remission. Clio was.

But then are another two years of treatment. Because leukemia cells are hiding somewhere in the body, guaranteed. Years of research have shown that if you don’t continue to treat, the disease comes back. 100% of the time.

(Isn’t this fascinating? You can tell people all about childhood leukemia at your next cocktail party!)

You’re only considered “cured” when you’ve been in remission — no leukemia cells in the blood — for five whole years. Statistically speaking, if you haven’t relapsed by then, it’s very unlikely that you will.

So. Is Clio getting better? Well, we hope so. We hope the mass quantities of chemo she’s being subjected to are eradicating every last little leukemia cell that might be hiding in her little body. And, hell, for all we know, there’s not a single cancer cell left.

But we don’t know. We just keep on keeping on, hoping, and assuming that she’s not going to relapse. And in August 2017, if that’s still the case, we can say with something approximating certainty that she’s cured. And I will exhale so forcefully that I will drop a bra size.

Meanwhile, here we stay, in leukemia limbo. And Clio is fine — except when she feels like crap, or there’s a complication. And the rest of us are fine, too. Except when we’re not.

In other words, pretty much, well, life. At least, that’s what I try to tell myself when the uncertainty starts making my head spin and my heart ache. The old, “hey, I could get hit by a bus tomorrow crossing the street!” kind of thing. (A meteorite could land on our house! The mega-volcano under Yellowstone could blow!) It’s all uncertain, cancer or not. It’s all beyond our control.

Still, it would be nice to know for sure that all this crap our family is going through will have a happy ending. It might make it all just a wee bit less stressful.

So, if you ask me how Clio is doing, forgive me if I give a blithe, vague reply. Or grin at you like a disturbed person. Or say something about life being like a box of chocolates, and you never know if you’re gonna git coconut or a screwy precursor B-cell. (Or, worse, cherry liqueur.)

Believe me, I wish I could give you a more satisfying answer.

23 Comments

  • April says:

    I will throw you a party in 2017 with lots of booze to celebrate Clio’s being officially cured! Till then keep being the awesome Mommy you are!

  • Nicole Barrasso says:

    Your blog is fantastic and hits the nail on the head every time. It is like attending the support group I should go to, but don’t have time to because my kid has leukemia. Thank you.

    • Jane says:

      Thank you, Nicole! It’s my support group, too. 🙂

      • Nicole Barrasso says:

        Maybe another time you could write about how you respond to people (who aren’t close friends) asking you how you are doing. Perhaps I’m being unfair, but I am kind of sick of being asked this by people who probably don’t have the desire or time to hear a truthful answer.

        • Jane says:

          Yeah, that’s always an awkward one to answer, too, particularly if it comes from people I don’t know very well. All I can really say is “It’s hard sometimes, but I’m hanging in there.” Although sometimes, if I’m in a particularly good frame of mind, or in a fun situation, I honestly just want to say, ‘Great!” but I feel like they’ll think it’s crass, or they’ll be disappointed. Or feel bad for asking.

          Bottom line, I get sick of it too sometimes, even though I know people mean well.

  • Liz says:

    I love the way you write. And I love that you are honest about your life. As my father goes through his cancer journey, it’s helpful to read about how other people are handling things. I wish Clio’s treatment didn’t have to continue for so long. Poor sweet baby. And poor you. And your family. I can imagine how hard it must be on all of you. Big hugs. And thank you.

  • 2017. Looking forward to the pictures you will post of the awesome party you guys will have in 2017.

  • Danielle says:

    Thinking of you and your family all the time.

  • Lori f says:

    Can’t wait to party like it’s 2017!

  • Ewokmama says:

    Yes yes yes yes. Exactly. I get asked this a lot, too, and it’s usually followed by “he’s okay now, right?” Well, I hope so. But that’s all I have – hope and probability – the latter of which did not work in our favor in the first place! Aaagggh!

    I feel ya. And I don’t know about you but I worry about relapse a lot! So while I’m saying to others, “oh yeah, I think he’s fine,” I still don’t feel like he’s fine and won’t for years.

    • Jane says:

      I worry about relapse on a daily basis.

      One of Clio’s hospital roommates had all the same positive responses to treatment that Clio’s had– early responder, basically no MRD, etc. — but relapsed 6 months off treatment. Same good response to her re-induction, but the bone marrow biopsy showed residual cells, with some kind of mutation over what she’d initially had. She had to come back and get a bone marrow transplant. I’m not sure, but I think BMTs have something like a 60% success rate. Flip of a coin.

      Scares the shit out of me that this could be us a few years from now.

  • Jane, do you ever just wish people wouldn’t ask you that question? I have a friend whose child is not doing well and she said she’d like to eliminate the ‘how are you?’ question from conversation.

    Of course, in this case, people are asking you how Clio is, not how you are. It sounds to me like you are handling that very, very tough question with aplomb.

    Good to see you at Randy’s reading recently. Sending only good wishes to you and your family,
    Linda

    • Jane says:

      Yeah, sometimes I do wish they wouldn’t ask, but I also understand that they want to acknowledge / express sympathy for our situation, and it’s hard to know exactly how to do that. But, yes, I’d much rather they ask how Clio’s doing than how I’m doing! That’s a much more complex one to answer, and usually more personal than I feel like getting into in a casual situation, or with someone who isn’t a close friend. (See my exchange w. Nicole, above!)

  • George says:

    My wife has multiple myeloma with a p53 mutation. (Myeloma has an iffy prognosis, but the mutation makes it worse.) It is also a blood cancer and her treatment and condition are eerily similar to your daughter’s, the exception being that there is no hope (at this time) for a cure. How especially hard it must be, though, to have this at a young age. I wish all of you the best.

  • You all deserve happily ever after. I hope with all my heart that certainty comes to you soon!!

  • Mary says:

    Jane – I just started to read your book, Double Time and am REALLY enjoying every page of it. I love your writing. I find myself laughing out loud at times and learning a lot! I decided to look you up on your website and heard about your little Clio, and I am so sorry that you are going through such a challenging time. There are no words for something like this. I hope you are able to find some comfort knowing that so many people are supporting you and your family from the sidelines (even the ones that are just getting to know you, like me). I find it really amazing and I admire you immensely for sharing your life journey with us…….it is wonderful. I wish there were more I could do to support you. Even this small reply cannot express how much of a wonderful mother I think you are. Thank you for writing your book and for sharing your life with us. I really appreciate it. My thoughts and prayers are with you and your family.

  • Gar Roper says:

    As so often the case, you write a simple answer to a difficult question and you make a profound statement. As the grandpa, I can tell you that the whole business makes me feel artificial in my responses, no matter what I do. Thanks for guidance on being authentic. Love you… Dad.

  • Thanks Jane for this great blog post. If I’ve found one theme in my cancer journey it’s control. It’s ridiculously difficult not to have it and I can only imagine how much more difficult it would be if it were one of my boys. The other thing I’m learning is that you can fill a much bigger book with the wrong questions that are asked of you than with the right questions.

  • gail erdos says:

    wow, jane, this is most likely my favorite piece. so well said.
    even now, when people ask me, i just find a piece of wood to knock on and say “i’m good today”.
    your girls are so lucky to have you as a mom!!!!

  • Jon P says:

    Hi Jane,

    Just wanted to let you know I dropped by to see how things are going. Even as you deal with anxiety of the situation, your writing continually blossoms. Still sending good vibes your direction, even though we don’t speak often.

  • Aw, this was a very good post. Finding the time and actual effort
    to generate a really good article… but what cann I say… I put things off a whole lot and don’t seem to get nearly anything done.