Late Effects

The purpose of Tuesday’s visit to the AFLAC Cancer Survivor Clinic Workshop, besides giving us an excuse to do a happy dance, because woo-hoo, SURVIVOR CLINIC, BABY! was to get a baseline check of Kendrie and her medical/social/emotional/neuro-psych needs now that she is {almost} two years off treatment. Also, to educate and enlighten us as far as what late term effects are likely or possible and how to watch for them.

Twenty-six months of chemotherapy, while directly responsible for saving my daughter’s life, also can, unfortunately, bring with it a host of potential problems. Learning problems, gross motor skill deficit, fine motor skill deficit, etc. Most of these problems occur, if they’re going to occur, either during treatment, or in the first two years off treatment. That is the window of time after which, if these problems haven’t already popped up, chances are good that they won’t. Hence the reason our clinic wants children to wait two years before attending their first Survivor Clinic appointment. We squeaked Kendrie’s in a little early since we are preparing for our move, but still, we’re pretty darn close to two years, which makes me smile just thinking about it. Especially if you compare this week to where we were this week four years ago:


Diagnosis and beginning of treatment, Oct, 2003.

We are fortunate, as it appears Kendrie has, so far, dodged the bullet(s) for complications and late term effects. One of the chemo drugs she took can cause heart problems, but both the EKG and echocardiogram from Tuesday were normal. She doesn’t have recurrent foot drop, or joint or bone problems from the steroids. Her growth does not appear stunted, nor does her weight seem to be an issue. Her blood counts were fine (although she was MAD AT ME for forgetting her emla cream and had to endure not one arm stick, but TWO, BOTH OF WHICH REALLY HURT HOW COULD YOU HAVE FORGOTTEN MY MAGIC CREAM?!?!?!?!?!) and did you know Scottish Rite no longer keeps freeze-y spray on hand so all you parents out there, when you go to Survivor’s Clinic, don’t forget the emla for pete’s sake, or your child will STILL be harping on it three days later, is all I'm saying.

There are other potential problems we will need to watch for later in life --- periods of time where learning problems might crop up (making the switch from elementary to middle school, or from middle to high school, for example) problems to watch for when she goes through the hormonal changes of puberty, and also, she will need to be watched by a cardiologist when/if she ever becomes pregnant. Her teeth and bones might be softer than average, and, she's at greater risk for secondary cancers for the rest of her life.

But overall, it was a very encouraging, positive visit. Kendrie is not having any of the common issues that crop up for kids who have received long-term chemo (kids with ALL leukemia). She also received different, less-intense kinds of chemo than say, brain tumor kids, plus no radiation, so in all likelihood, we dodged those potential problems, as well. She is physically active, and is doing well in school.

I left the clinic feeling very blessed, very fortunate, very privileged. Because NOTHING separates us from those kids who have these types of problems than pure, dumb luck.

Then, we arrived home, and before I realized what was happening, before I could even prepare myself for the shock of what was to come, she appeared to have fallen victim to a side effect so insidious, so sneaky, that they didn’t even mention it as a possible problem. I was so busy celebrating our clinic appointment that I didn't even see it coming. Quite frankly, it’s so dire, I’m not sure how we’ll cope. It seems that one horrifying late term effect of chemo is that my tomboy, my so not a girly-girl, my “rough and tumble, I’d rather skateboard than play house, I’ll wear blue jeans and t-shirts but not dresses, and let’s chase frogs and bugs all day long” daughter --- has been reduced ------ to {gulp!} ---- playing with DOLLS:



Oh, the horror.

I was stunned.

Then she told me she was only feeding Brayden’s Baby Alive doll to see if it would poop.

Ahhhhhh, *that’s* my girl!