(Un)even Steven

Oh, my poor derelict blog. These last few weeks were a whirlwind — nay, maelstrom — of packing and prepping and de-cluttering as we got our house ready to sell. “Got,” past tense, because we’ve got buyers! Didn’t even make it to the open house. So I’m sitting here now in our gorgeously sparse, staged house after having camped out at Alastair’s parents’ place for a week, thrilled to be home and to have everything more or less settled.

I’m also — to my utter surprise — looking forward to re-cluttering this place a bit (but not completely!) so it actually looks and feels like home. Poor Elsa, when we were over here briefly the other day, broke down weeping, saying “It doesn’t look like our house anymore!!” I’m guessing it will take 48 hours of us being back, tops, for it to feel adequately chaotic again.

So, here’s what I’ve been thinking about lately (in addition to how many of the girls’ toys I can get rid of without their noticing…bwah ha ha):

The other night at the kitchen table — Alastair’s parents’ kitchen table, that is —  both he and I struggled to help Clio understand the concept of making a number out of various combinations of tens and ones. (e.g. 49 = 0 tens and 49 ones, 1 ten and 39 ones, etc.) Even when we skipped the more conceptual understanding and focused on following the patterns in the sequence, she just couldn’t seem to get it.In general, she struggles a bit with math. She’s not dramatically behind her classmates by any means; she’s doing fine. But she is dramatically behind Elsa, who flies through her homework, and consistently does above grade-level work. So it’s hard not to compare.

The fact is, Clio has always been a little bit behind Elsa in terms of her intellectual (is that what you call it?) development. Elsa was coloring inside the lines earlier, drawing representationally earlier, getting abstract concepts and starting to read earlier.

I’ve always just chalked it up to the wonders of genetic variation. But it feels like the gap has grown much larger since Clio got sick. And I wonder constantly: would it be this way if she hadn’t gotten cancer? And if it does have to do with the cancer, is it simply because she missed a lot of school last year and/or doesn’t have a ton of energy, or is it because — to put it bluntly — the chemo is fucking with her cognitive function?

Because chemo can do that. Especially when it comes to growing children’s brains, and especially those of girls, for some reason. Learning issues and disabilities are a not uncommon  long-term or late effect of leukemia treatment. There can be issues with organization/executive function, reading, processing speed, visual memory, understanding math concepts and remembering math facts.

It’s worse when the child has received radiation, and we’re fortunate that Clio hasn’t. But she’s gotten plenty of other nasty stuff, in pretty high doses because of her high-risk profile.

I worry most about the Methotrexate. You know, that fun stuff that give her a major seizure and landed her in the ICU on a ventilator a while back. The stuff she continues to get spinally every 9 weeks and intravenously once a week. It’s known to affect cognitive function, and Clio is getting a crapload of the stuff.

Now, I’m well aware that it’s possible the chemo has NOTHING to do with the fact that Clio is behind her sister academically. Siblings can be remarkably different in that regard (my brother and I were), and it’s not like she isn’t making any progress. She is. Lots, actually, especially with reading.

But still. I can’t help wondering what things would look like if she hadn’t gotten cancer.  I don’t go to that place very often, because what’s the point? And it makes me a little sad, thinking back to that tranquil place just before the road forked; before we had to start bathing Clio’s body and brain in poisons to save her life.

Of course, learning disabilities or osteoporosis or fatigue or whatever other effects may be with her for the rest of her life because of her treatment are a small price to pay for the fact that, you know, she’s still here. But as I see Elsa whizzing ahead, I can’t help feeling like Clio’s been cheated out of something.

On the other hand,  man, what wisdom and confidence she has gained.

Now, off to scatter toys and crayons and random objects around our house….


10 Responses to “(Un)even Steven”

  1. Donna says:

    So, this is what I think (for what it’s worth). She missed a lot of school, and she had cancer to worry about. So she’s working on that. In a couple of years she will catch up and you won’t notice such a difference, other than the fact that she’s a different person with different talents to her sister.

  2. April says:

    I feel like even though our lives are very different we have similar struggles. I also have one twin that is reading almost two grade levels higher and whizzes through all school work. Then I have a twin that struggles and is behind even on some things. For us its autism verses not having autism.

    It can be hard especially when they assign SO much homework and we try to do all of it together but since they are at different levels it means Eric has to wait around on Harrison who is slower or I have to do it one at a time and it takes forever. That is just the way it may be forever and I guess we have to be okay with that. It is hard when one twin wins all the awards at school and your other one is lucky to get one award a year.

    How do you deal with that? It sucks. With her missing so much school and not feeling 100% she could just be behind but will eventually catch up. So it may not always be like this. Time will tell. You just have to make sure they both do their best and concentrate on what makes them unique and special.

  3. Gail Erdos says:

    Jane,
    I understand what you’re saying (as this stuff applies to adults too in a lot of ways). What I also know is that as hard as it must be not knowing the “why” of it all, you have 2 of the coolest kids I know, each with her own set of “strengths”, be it cognitive, physical, comedic or plain old fortitude. Every kid I’ve ever taught has their own learning style, their own aptitude for certain academic leanings. You, as always, take an honest look at it all. Now, go scatter some Star Wars figurines and kiss those amazing girls…

  4. Laura Deksnis Taylor says:

    I really appreciate reading this. Hearing another person articulate the same fears I have lessens the terrifying grip they have on me. My son also had a dreadful reaction to a megadose of methotrexate (we just call it meth, yeah, it’s that bad) and I really relate when you say “bathing her body and brain in poisons to save her life”. I still really struggle with that. I mean, I breastfed the kid for a year, cooked homemade food, and only bought organic apples. But now I have to crush up poison tablets and mix it in applesauce, to save his life. Sigh. We do our best, right?

  5. Gar says:

    Remember back when you were both kids, your brother said, “Jane may know everything but I know everything I need to know.”

  6. Kristen B says:

    It makes complete logical sense to me that the medications and of course just the energy that Clio has had to put towards healing could have impacted some of her progress. But I will also say that my twins are completely different academically, despite my having worked with both of them identically. Olivia reads well above grade level and Ethan struggles to hit grade level. Ethan can do math faster than I can, and Olivia just doesn’t “get it.” Sometimes it feels like I’m in the middle of a science experiment – it’s impossible not to compare them, but ultimately people are just different. Whether it be from nature or nurture (or the things we each encounter and must overcome), there will always be variations.

  7. Joanne Leslie says:

    I really appreciate your writing this blog. On the issue of differences between Clio and Elsa, how much is due to Clio’s illness and treatment and how much to innate differences, I don’t have much to offer beyond what you say; it might be or it might not be partly treatment related. What I am so grateful for is your acknowledging how hard it is for parents to see/suspect these difference in our children, especially in intellectual ability which our society prizes highly. And that we can’t help second guessing whether there are things, even things we couldn’t control, such as birth order, that might be partially responsible. Thanks for putting it out in the domain of “legitimate things to talk about.”

  8. June says:

    I have seen in the case of two students now who’ve been treated for cancer while enrolled in our elementary school, that at as time progresses, and they are weaned off of the high doses of the heavy medications during the most grueling phase of treatment, that often their learning improves. I would not assume that the deficits you see now would always remain. As you know, those medications are so powerful and can cause all kinds of memory and stamina issues. I would have great hope that in a year or two (or even sooner), you will see marked increase in skills. I am thinking as I type this of two of our school’s kiddos who are doing quite well and who are able to learn in ways their parents expressed great concerns about during the intense phases of their respective treatments. That’s not to say that Clio and Elsa may not always have very different profiles as learners, but I think there’s every reason to be optimistic that you’ll see some big leaps in memory and focus as time elapses from the intense chemo phase for your girl.

  9. Christine says:

    My bf was diagnosed with AML and had a BMT. He is a little more than a year past treatment and had cognitive deficits for a bit of time after he finished treatment. Now he’s back to his normal smart a@@, academic exelerated self and is prepping for law school.

  10. Ewokmama says:

    What you describe with Clio sounds a lot like the math struggles Jack has. We’re not sure if they are permanent or not – but we’re pretty sure it’s from the chemo because his math skills were strong before he got sick and our methods for teaching him stopped working. Not only that, but it varies – one day the concepts will click with him and the next he can’t seem to grasp how numbers work. Also he was on lower doses of chemo during the last 6 months and things had improved somewhat but now that his doses are going up again, he is struggling again with homework. I am hopeful that it will improve once he’s done with treatment – we weren’t able to get much traction with the school for special services because it’s unclear whether the issues are related to school absences and while he’s not working at his own potential, he is still meeting standards and not falling too far behind the other kids.

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