Friday, October 12, 2007

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!

25 comments:

Renee said...

That's a picture to keep forever. Go Kendrie!!!

Deb said...

Congratulations on reaching this milestone with such good results!!!!

Alice said...

Awesome news! What a great way for all of us to start our weekend.

Becky, in N. TX said...

Kristie,

Glad to hear the visit went so very well!!!!

I was beginning to read with trepidation thinking the "other shoe would fall" any minute.

I have been wanting to ask a question for quite sometime but thought maybe I shouldn't. However, in this post you brought it up so I guess I will. All of my knowledge of chemotherapy is almost 20 yrs. old so that might be the reason for my ignorance. Anyway, I was taught that one of the long-term side effects of intensive chemotherapy was damage to the reproductive cells. And, thus, medically induced sterility. Is that no longer true with newer drugs?? What a GREAT advancement that would be?? I have to confess it has weighed heavily on my mind when I read about Kendrie and other survivors. Please educate me!! I know if it has occurred to me others must be wondering as well.

YOU ROCK!! (does that make Kendrie a ROCKETTE??)

Prayers always,
Becky

Colleen said...

Wow Kristie, I can't believe it's been two years. Glad to hear the visit went well.

Are the kids excited about the move to OK?

Pam Earley said...

3 Woo-hoo's to Kendrie.

1) Woo-hoo on (almost) the 2 year OT milestone

2) Woo-hoo on making your mom freak out when she saw you with the doll

3) Woo-hoo on your reasoning for playing with the doll.

WendyK said...

Congrats on 2 years OT!!!! Your story is such an encouragement for our family. We hear about all of the late effects, and quite frankly it scares the heeby geebies out of me, but it is comforting to know that it is possible to come out without long term effects.

The baby alive story is too funny!
www.caringbridge.org/visit/kadenkilburn

Pam Doughty said...

I was worried there for a minute; I mean, Kendrie looks all girly with that long hair and everything, and feeding a DOLL?? But thank goodness she had a valid reason for doing it; whew!
It's hard to believe it's been nearly 2 years since the off-chemo party and all the rejoicing. I am truly, sincerely happy that Kendrie's road has been so smooth since then. Now, we just need to work on Blaine.... :<)

Anonymous said...

What great news! I can't believe it has been almost two years. Kendrie's Off Kemo Party remains on my frig and I always get a kick out seeing it!

Postcard Cindy

Kim said...

Glad to hear that Kendrie is enjoying life and not having to deal with late effects.

If I can butt in and answer Becky....my understanding (at least with ALL treatment) is that they werent sure about fertility, because two decades ago, most of the kids didnt survive. Now that kids are living longer, and are able to be followed, they have found that it doesnt impact their fertility (with the exception of those that had total body or testicular radiation...and those that have endocrine and hormone issues -which are not common.) HTH.
kim

Leeann said...

Great big KUDOS to Kendrie on the great TWO YEAR SURVIVOR report!! I am so, so very happy for her and for all of you. Now let's get Blaine in that perfect place as well!

Leeann
niccofive.blogspot.com

Anonymous said...

I LOVE IT!! I have followed Kendrie thru all the stages of her tomboyness and I just loved this picture of her.

Lisa L said...

I am so glad for Kendrie's continued good health and your joy is this post is palpable Kristie. Yay, Kendrie! The photo of her in the hospital bed almost took my breath away. What an awful time for you all that was. I had a question too about chemo etc. I've noticed on several of the ALL childrens' journeys, that milk, ice-cream etc, is a no-no. Was wondering what the reason was for this...

Pam Doughty said...

Speaking of survivors, Kristie, go check out Tyler's site.. he has pics of his new leg, and it's very cool! I have a feeling that my boy will be wanting to race him and will be totally shocked when Tyler smokes him!

Grandma J said...

Great news! How blessed that Kendrie has been OT for almost two years and doing so well. I look back over the last four plus years and thank God for all the children who "made it" and I continue to pray for the ones still struggling through relapses and BMT. Of course we never forget the families who will always have a huge hole in their hearts....
Kendrie looks so cute with that doll. I can just imagine the poop because the food going in looks awful. It's a far cry from my Betsy Wetsy.

Anonymous said...

As I read the end of your post, I figured it would have a funny punch line, but I wasn't completely sure. I will continue to pray for Kendrie, Blaine, you!!! and the rest of your family. I'm praying that cancer "gets the message and stays very far away from your family"!

I'm praying that your move goes smoothly and that there is an abundance of Sonic ice and DDP wherever you go. Blessings to each of you!

With love, Lynne B.

~*~Snappz~*~ said...

What can I say?

Congrats on the milestone. That's terrific :-) Thinking of you all!

Amy said...

I can't believe she was actually feeding the doll, even if to see if it will poop!! She looks like a natural.
She really did kick cancer's a**!!

Anonymous said...

CONGRATULATIONS on winning the "bad mommy" award at such a HUGE milestone for ALL of you. Frankly I was surprised you didn't have a marching band to loudly proclaim it an Official Victory. Amazing that after all Kendrie went through that a needle would rattle her cage--means she not only beat cancer but that Mom made the nightmare a NON-memory. You did GOOD Kristie....So happy you were able to squeak in this aspect of "closure" before the move. Randy - PS - Who was the official poop cleaner upper??

Anonymous said...

And here I thought Kendrie had crossed over to my world! At least we know she'll be a good mom and will feed her babies, if only to see them poop.

Excellent news from the Survivor's Clinic!

Would you praying people please say one for a little guy in Seattle named Gary who's having surgery next week to remove a rib or two because of his Ewing's Sarcoma. I follow Tyler and rejoice his positive outcome from this nasty form of cancer.

Dixie in CA

Patty House said...

2 years...AWESOME!

To see if it would poop...too funny!

lizinsumner said...

Whew - what's REALLY scarey is that doll's face, and I'm only seeing a side view....how does that doll not give all of the little girls that play with it nightmares????!!!! Does anyone else remember that hour long show in the 70's, I think, that had like 2-3 different "short" stories in it that were always like, super spooky, and there was this one with this doll that kept getting progressively more evil looking???!!!! Never mind....the important thing is all of the good news on Kendrie's health!!!! Congrats, Kendrie! I hope that someday, long in the future, she won't even have any memory of the years of illness/treatment at all......

Marcia said...

Hooray for such a positive visit to the SURVIVOR CLINIC!!!!!

LOL about the Baby Alive. :O)

Dianna in Louisiana said...

Kristie:

I am THRILLED to read how great Kendrie did at Survivor's Clinic-- Really, so, so happy for you guys.

Dianna

Kati and Bessie said...

Congrats on Survivor Clinic, it's great, isn't it???

BTW, tell Kendrie that some of us were never fortunate enough to have magic cream and that I still have to get stuck several times a year and I don't get magic cream... but Jason does get to listen to me complain for a few days.

Just wait till you get to that appt. when she is close to 30 and they start saying that she should be having kids now. My doctor asked if I wanted to lay down because I turned so pale.