Sunday, November 06, 2005


Monday, November 7, 2005 9:02 AM CST

Tuesday morning update

Well, in a very discouraging "See what I mean?" sort of update, I found out yesterday, just a few hours after posting the journal entry below, that our friend and fellow Scottish Rite patient Keegan has relapsed. We've been lucky enough to get together socially with Keegan, his mom Audra, dad Mike, and his brother and sisters a few times since they moved to Georgia. They are a great family and I feel extremely sad and frustrated for them at this set-back. They know for now it's a CNS relapse and Keegan will get a bone marrow aspiration done on Wednesday to see if he has relapsed in his bone marrow as well. Please join me in praying that has NOT happened .... please also visit Keegan's site to leave his family a note of encouragement and hope as they square up and make some decisions about his care ... Keegan's a fighter, like all these kids are, but that doesn't make news of a relapse any easier to take.


39 Days to Go

Wow, I had no idea there were so many people out there (ok, I admit, mainly girls) who have never seen Star Wars. No doubt, we’re the minority …. but, still, isn’t it great to know you belong? For the record, I have also never seen the Lord of the Rings trilogy or any of the Matrix movies …. although I am a huge Harry Potter fan and am holding my breath until the 18th when The Goblet of Fire hits the big screen-oh-my-gosh-I-can’t-wait!!! But I digress.

Also, to answer Ali's mom Marey’s question in the guestbook, yes, the Book Fairy did make her annual Halloween Night appearance at our house this year. For those of you unfamiliar with the Book Fairy (the Tooth Fairy’s more cerebral cousin, I believe) after trick-or-treating, that night, my kids can eat all the candy they want, as in “stuff your face until you make yourself sick” kind of binging. Then they choose five pieces of candy for the next day, and everything else goes back in their bag and is placed on the front porch. While they sleep, the Book Fairy comes and takes the candy, leaving new books in its place. The candy magically disappears (with just a few choice pieces “accidentally” left behind, hidden in a special “parent’s only” cabinet) and we don’t have to deal with the sugar high for the next month. I don’t remember where I originally heard the idea, but I think it’s a great one. I fear, alas, this will be our final year for the Book Fairy, as Kellen was overhead grumbling that next year, he’d rather have the candy. Damn.

So anyway, on to bigger and better things.

I was having a phone conversation the other day with a dear friend --- and by “dear”, I mean someone who actually visits this site, so I’ll be changing a few personal details so that person doesn’t recognize herself (or maybe his-self) in this journal. And if you *do* recognize yourself, please know that the following journal entry is nothing more than a personal observation about life, in no way meant to be complaining or gossipy or mean-spirited. (I save those qualities for my face-to-face conversations!)

Ok, so this friend and I were talking on the phone. This friend has great kids; lovely and healthy. So although she doesn’t “get” the childhood cancer journey from a personal perspective, she has been extremely supportive of our trial from the beginning. We were actually talking about another family that she knows, who has a child recently diagnosed with the same kind of cancer as Kendrie. This family’s cancer experience has been nothing like ours …. quite frankly, they are looking for a miracle at this point and it’s difficult for those around them to know what to say and do right now. Or at least that was the gist of our phone conversation. My friend was telling me she wants to help, but doesn’t know what to say to this family …… here’s her comment, verbatim: “It’s just so awful, and we’re all hoping for the best but fearing the worst ….. I remember when Kendrie was first diagnosed and it was such a shock that I didn’t know what to say to you, either. Of course, now that you know she’s going to be ok, I don’t feel weird bringing it up.”

Let me reassure you that I “get” the “feeling weird bringing it up” aspect. Even within our own cancer community, there are some families I am unsure with, because as much as you want to be supportive, you realize some families are more private than others. What is seen as helpful by one family might be considered intrusive by another. Somebody like me, who pretty much puts our whole life out here in this journal …. Obviously, I’m not that reserved. But I do appreciate the hesitation some people have and have it myself on occasion. But that’s not my point, nor what I found odd about her comment.

Rather, it was this: “Now that you know Kendrie’s going to be ok” ………………. Wow. OK. We do? Really? “Know”, as in, with confidence? 100 percent sure? We KNOW Kendrie is going to be ok? Hmmmm. What an unusual choice of words. That’s kind of a shocker to me, because despite the fact we are 39 days away from finishing treatment, I am nowhere near confident or convinced that she’s going to be ok. I’m hopeful. Optimistic. Prayerful. Encouraged. But do I KNOW? No, I don’t. And, for one of the (very) few times in my life, I was surprised into silence by her comment. (I know, write it down, it doesn’t happen very often!)

Believe me, I sincerely appreciate the optimism of the thought. But it’s so far from the truth that I felt compelled to address it. Maybe my “look on the bright side” attitude belies the panic and fear that is often in my heart. Just how DO I feel now that we are so close to the end of treatment? I guess the only adjective that comes to mind is “Scared Shitless” (is that really an adjective?) …. But since that’s how we’ve felt since the beginning, it’s not news. I mean, she’s doing so well on chemo, with relatively few side effects, and it seems to be keeping the leukemia at bay …. Well, why can’t we just keep her on it for a few extra months? Or years? Would her oncologist think I was crazy if I made that suggestion? Sure, I know there are long-term effects to worry about ….. growth issues, learning problems, secondary cancers. So she’s short, and needs a math tutor, who cares? If it’s keeping her alive and healthy, why not just keep it going?

There are so many analogies I’ve read and heard about ending cancer treatment and losing your safety net of chemo --- chemo is like carrying an umbrella; you started in the rain forest, and by the end of treatment, you are in the desert, but once you stop treatment and put away the umbrella, you are terrified it will rain again. It’s like a plaster cast you’ve had on a broken leg for the last twenty-six months; you *know* the bone is healed, but you’re still terrified to take the cast off, throw the crutches away, and actually put weight on the foot. What if it breaks again? Or (my personal favorite and one I made up myself) it’s the difference between going to prom in a strapless gown or one with spaghetti straps. Technically, you don’t *need* the straps to hold the dress up, but you feel a lot more confident with them there. What if you cut the straps (end chemo) and the whole contraption falls down around your knees???

I’ve heard several different time frames for when Kendrie will be considered “cured” …. The definition of cured being that the chance of the cancer returning is no greater than the chance of any healthy kid getting the same cancer. The number I hear most often is five years after she finishes treatment. Five years. That’s a long freakin’ time. Should I start my journal entries after December 15th with “1,725 Days to Go!” ??? Is that how long before we can relax? Would you guys even stick around that long?? So, for **only** the next five years is it that we have to worry she is at a greater risk for relapse. And, no chemo entering her system to battle any errant cancer cells that might still be lurking. Every bruise, every fever, every tired day, we worry that it’s back. It’s exhausting. I’m exhausted. But I’m also excited to get to that point. I feel eager to be done, and grateful she has done so well, and terrified and worried she will relapse, and feel annoyed for feeling worried, and feel guilty for feeling annoyed, and feel sad for feeling guilty …. Wonder if my middle name should have been Sybil?

All along, I’ve said, *this* is the crux of childhood cancer. The never-ending worry in the back of your head that it’s Not. Over. Yet. Yes, cancer stinks, and yes, the treatment for cancer stinks. But if your child comes through it (even better, relatively unscathed) and you could be guaranteed a lifetime of good health, you would consider that stink no more than an unfortunate step in a blob of doggie doo. It’s the fear and concern, like a black cloud that won’t go away, that is the big stink. The “Oh my gosh, did they hit a sewer line? No, kids, that’s the lovely rotten-egg aroma of natural sulfur” kind of stink that cancer parents everywhere feel. I’ve asked it again and again, *when* do we get to quit worrying?

When did the following families quit worrying?

Victor's family, Leah's family, Matt's family, Caleb's family, Thomas' family, Jonny's family, Colin's family, Alex's family, Clare's family, Spencer Rocket's family, Kevin's family, Chloe's family, Matthew's family, Isaiah's family, Ashley's family, Collin's family, Marcus's family, Julianna's family, Chris' family, Jake's family. And of course, there are many, many more.

Some had just barely started treatment when they relapsed, some were in the middle of treatment, some were soooooo close to finishing, some were finished with treatment --- by as much as three years! Now, some are done with their relapse protocols and doing great, some are still battling, and sadly, tragically, some have passed away.

So, I say, if there’s any kind of benevolent promise or prediction of which I’m unaware …. that lets me KNOW that Kendrie will be OK, I’m all ears. I would love nothing more than to KNOW she will be OK. In the meantime, I guess I’ll keep babbling my concerns to you guys. Caringbridge is therapeutic, if nothing else. Or maybe I’ll just try Prozac. If you get tired of listening to me, visit Julianna’s site today. She put up a pretty profound entry on the same subject and is looking for her normal, as well.

As always, when I really sit down and think about it, I’m feeling “crazy”. Thank you, Seal. And thanks to all of you for checking in as well. Especially if you made it to the end of this rambling entry.

Take care,


Kendrie, after finishing up her lesson on Farm Animals at school: “Mom, did you know that baby cows get milk from their mother’s others?”

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