THE ABC’S OF MENTAL INSTABILITY

Day 86 of Kendrie’s OT
Yes, I confess, I’m still feeling a little mentally unstable this week.

Still? THIS week??? How does *this* week differ from any other time of my life, when mental instability is the norm? Well, now, I have this journal and you lucky people get to hear about it --- something you’re thrilled about, I’m sure. So, let’s just get started, with Kristie’s Tour of Unstable Emotions:

A is for Annoyed: Yes, I admit it, I am just plain annoyed. Annoyed at cancer, annoyed that we’re facing it again, annoyed that we haven’t really had a break from facing it for the past three years. First Blaine, then Kendrie, now Blaine again. In a small, demented way, I'm even annoyed with Blaine, as if any of this is his fault, something I'm sure we'll need marital therapy for when this is all over. Just annoyed, annoyed, annoyed (not to be confused with “annoying”, which is the adjective some of you might consider more appropriate!)

B is for Blessed: OK, so we’ve been beat with the cancer stick twice. But we’re blessed because Kendrie’s cancer came with an 85 percent chance for survival, she handled treatment like a champ, and Blaine’s cancer is a slow-growing, not-too-aggressive kind. You hear about people like my great aunt, who was diagnosed with leukemia two weeks ago and died seven days later. We are blessed we’ve been handed a chance. Twice.

C is for comforted: Comforted by the kind e-mails, notes, cards, meals, phone calls, etc, that people have been thoughtful enough to send.

D is for discouraged: Is it ever going to freakin’ end???

E is for embarrassed: Embarrassed that my emotions are all over the place. But I suppose it’s normal in a situation like this. So really, why should I feel embarrassed? I mean, it’s not like I don’t have cause to feel emotional. So why is it embarrassing for me? Because I am a schizoid-freak, that’s why. It’s so embarrassing.

F is for frustrated: I don’t know who to turn to, which doctor is in charge, who is making decisions, who has the answers, or of whom I should be asking them. Blaine has a Primary-Care Manager here at Robins Air Force Base, who is consulting the medical board here. His first surgeon, in Augusta, is recommending we go to Seattle. The Seattle doctor has referred us to his tumor board, who is recommending five weeks of radiation. In addition to surgery? In place of surgery? What about the chemo they talked about? The Air Force is recommending we go to Walter Reed. Who is the doctor at Walter Reed? What would they do there? What is the best treatment for Blaine? Who decides? Do we have any say in the matter? Who’s the boss? ‘Cause it sure as heck ain’t Tony Danza, I don’t think.

G is for grateful: (See F) At least we have options, and doctors who care about Blaine enough to try and make the best decisions on his behalf. I am grateful that they all want to do what is best for him, and help him. {Reminder to self: beat head against the wall to the tune of “grateful, grateful, grateful” when I start feeling frustrated.}

H is for hopeful: I have to tell myself that even though this has been dragging on, and he's already had eleven surgeries in the past three years, at some point we are going to look back at this as nothing more than a bad period in our lives. I am hopeful we will eventually return to a semblance of normal, that Blaine will feel healthy and happy again, and that cancer will be simply a blip in the rear view mirror of our life. Then we’ll win the lottery, and things will be especially dandy. {Note to self: need to actually PLAY lottery.}

I is for impatient: For Pete’s sake, can these doctors not just get together in a phone consult or something and make a decision already? How can we make plans, if we don’t know what THE PLAN is???

J is for jealous: Jealous of families whose biggest problem is whether little Timmy should play soccer or t-ball this spring. Jealous of families who aren’t putting their spring, summer and fall plans on hold because they have no idea where they might be, or at what phase of treatment. Jealous of military officers whose careers haven’t been derailed by cancer. Jealous of families whose children DON’T think it’s normal for everyone to get cancer.

K is for keeping a stiff upper lip: Hey, I didn’t say that’s what I’ve been DOING, I said that’s what I’ve been feeling I should do. I am not succeeding, as evidenced by the (yet another) self-absorbed, depressing post that you’re reading now.

L is for lucky: We are lucky that our military insurance has been so wonderful (knocking furiously on wood) and that we are not in financial ruin from all this crap. Sucks for all you taxpayers, but lucky for us.

M is for mad: Just how, exactly, is this fair? Just when, exactly, will it be over? (Oh, that's right, "fair" and "cancer" have no correlation, as millions of people all over the world can attest. Do they all feel as mad as I do?)

N is for nervous: This doctor said the radiation they are recommending has a 60 percent success rate. Um, what happens to the other 40 percent? What does that MEAN, exactly? And who do I ask?

O is for offended: I feel like cancer is sitting back, sticking its tongue out at our family, and quite frankly, I’m pretty damn offended.

P is for peeved: See A.

Q is for quiet: Sometimes, a little pouting is in order. Not publicly, but quietly. Preferably with lots of chocolate.

R is for resentful: See J.

S is for self-conscious: I mean, could we BE bigger shit magnets if we tried?

T is for thankful: Kendrie had an oncology follow-up appointment on Thursday. Despite the six-inch bruise on her shin, her blood counts were perfectly normal. I’m beyond thankful she is doing so well. She’s grown an inch since she finished treatment! How can I whine like I’m doing now, when my daughter is thriving off treatment so far?

U is for uptight: Three years ago, when Blaine was first diagnosed, if you had told me we would be in this situation today, I would have rolled my eyes and thought it impossible. Now, I get all clenched wondering where we’ll be three years from now.

V is for vexed: Could just one stinkin’ thing go right for the guy? You know the surgery he had two weeks ago? Well not only could they not remove all the tumors, or do the reconstruction they had planned, but the incision they made through his upper lip is a disaster. When they removed the stitches, his lip literally split. A big chunk is missing, and its forked, for lack of a better description. So, add another surgery to the litany of things he still needs done.

W is for worried: Imagine where my mind goes in the deepest, darkest parts of the night.

X is for xtremely (spelled wrong) self-absorbed: It’s not so much that I’ve *felt* self-absorbed, as I have been, and I feel guilty for it. I’m not answering e-mails, I’m having trouble returning phone calls, I’m not posting messages in Caringbridge guestbooks. I just can’t seem to move past myself lately, and let me tell you: MYSELF is boring me to tears, what with all her whining and complaining and bitching and moaning.

Y is for yellow-bellied: I want to crawl in a hole, hide my head, and have someone wake me when it’s all over.

Z is for zealous: I have been all over the internet, looking for support groups and information for Blaine’s kind of cancer and the treatment(s) they are proposing. It doesn’t exist. I have searched high and low, and have come up with nothing. Zealousness is only satisfactory if it pays off, let me tell you that. An empty-handed zealot is pretty worthless.

So there you go. If you’re considering sending me a straight jacket, I wear an XL.

In the meantime, thanks for putting up with us. Well, more specifically, with ME. I’m the obnoxious, self-centered one in the family who obviously needs a good kick in the pants. But here’s proof that despite the circumstances, life goes on as normal, in definite “Kristie-style”:

Kendrie and I met friends for lunch on Thursday after her clinic appointment. As soon as we sat down in the booth she needed to go to the restroom, so I got up and took her. Apparently, without realizing it, I returned to the table with a long string of toilet paper stuck to my boot. Yeah, that’s attractive. What makes the story even better is that when our meal was over and she said she needed to use the restroom (yet again), I got up to take her and noticed the toilet paper on my foot. I made a joke, laughed it off in front of our friends, and went back to the bathroom, only to discover there was a wrapper from a juice box straw stuck to my ass the whole time.

Really, could I be any classier?

THANKFUL FOR THINGS I DIDN’T EXPECT

25 Days to Go

After posting my last journal entry about my fascination with Harry Potter, it occurred to me that I actually have cancer to thank for learning about him. (If you’re a HP fan and didn’t get a chance to read the entry, go into the journal history and look at it, because I gave a link to a really humorous site.) Of course I had heard of the Harry Potter series ….. who hadn’t? But I never thought I would enjoy it; sci-fi, fantasy, wizards and witchcraft … SO not my thing!

Then one day, three or four months after Kendrie was diagnosed with leukemia, she and I went to the clinic for one of her chemo appointments. I had gotten confused (imagine that) and thought that particular day’s appointment was a short one when in actuality it was a long day of IV chemo and transfusions. I was completely unprepared; no dvd player, no books, no magazines, etc. Kendrie, of course, was pre-medicated with Benadryl and slept through the entire process, but there I sat with six hours stretching out in front of me and absolutely nothing to do to pass the time. This was back before our clinic was remodeled and we didn’t have private transfusion rooms, so I couldn’t even stretch back in my chair and take a good nap myself.

In desperation, I walked over to the kids’ library cart, hoping to find ANYTHING to read to kill a few hours. As I browsed my choices (along the lines of The Very Hungry Caterpillar, Curious George, and a few Captain Underpants books) I saw the only book that appealed to anyone over age eight --- Harry Potter and the Sorcerer’s Stone. I scoffed a bit, since I just knew the book would be so stupid and boring, but hey, if you’re desperate, you’re desperate, and I settled in with the book, my introduction to Harry and Hermoine and Ron and the gang.

Needless to say, when Kendrie woke a few hours later and I hadn’t yet finished the book, I snuck it into my purse and stole it from the clinic! By the end of the week I had purchased and read every HP book written to date, and thus, my obsession began. (PS. I DID return the book at our next visit, just in case you were wondering about my kleptomaniac tendencies!) So anyway, I consider Harry Potter to be one of the unexpected perks of Kendrie getting cancer. In a very weird, twisted way. And I’m thankful.

I’ve heard people say that a cancer diagnosis is a gift; making us better people, more appreciative of the little things in life, more patient, happier with our children, more grateful for every moment we get to spend together, etc. You know what I say to that? I say blah, Blah, BLAH! (imagine me making little “talking” motions with my hands) I would much rather be less appreciative, less grateful, less patient, and a suckier person all around, if that meant my daughter never had to go through ANY of this! If you think I’m going to say I’m thankful she got cancer, you’ve obviously dipped into the holiday eggnog a little early this year.

But, like my discovery of Harry Potter, there are some things I can *indirectly* thank cancer for, and I think this Thanksgiving Week might be the perfect time to do so. So, here are my top five, "Good Things That Have Come From Cancer":

1) I have cancer to thank for getting in touch with my “feminine side”. While I am still anti-pedicure, and the thought of someone touching me for a massage gives me hives, I am able now to give hugs a little more freely and let people know how much I care about them. I’m not so uptight about expressing my emotions. Don’t get me wrong, I’ve always cried at appropriate moments (like when they took “Thirty Something” off the air, and when Bill Clinton was elected President. Both times.) But now I find myself crying all the time….. reading books, listening to music, Hallmark commercials on tv … I’m pretty much a sobbing fool. And things that should be normal rites of childhood, like watching your daughter step up to bat for the first time at t-ball, or singing with her fellow kindergarteners at her Thanksgiving Feast … well, most parents simply smile proudly. I, however, am reduced to sniffling and dabbing at my eyes with Kleenex, so very thrilled with all Kendrie has overcome, unable to stop the torrent of happy tears that threaten. On second thought, maybe I shouldn’t be thankful for the blubbering mess I’ve become. It’s actually quite embarrassing.

2) I have lost friends, and I am, in reality, grateful. Being a military wife for the past eighteen years, I spent way too much time and energy trying to maintain friendships and relationships (some up-close, some long-distance) that really needed to die a natural death. I was the sort of person that always thought, “One more letter, one more phone call or e-mail, I’ll keep trying …. I hate to lose a friendship, even if I am the one doing all the work.” I know it sounds clichéd, but after Kendrie was diagnosed, we learned quickly who our real friends were. We had some casual acquaintances who stepped up to the plate and became good friends, and we feel blessed to have made new, valuable friendships along the way. We’ve even met total strangers who have made it their life’s work to help families in our situation. This experience has freed me up to say, “You know, if you couldn’t bother to call and check on us, or drop us a note, or check this caringbridge site, when our daughter was diagnosed with cancer, for Pete’s sake, then it is clear to me that our relationship was one-sided, and I feel no guilt about letting it go.” The people who are in our lives now actually care about us. Do you have any idea how empowering that is???? Plus, it saves me money on Christmas card postage during the holidays.

3) I have a much clearer perspective and can now see the difference between a crummy day and a true tragedy. I used to be guilty of complaining about “having the WORST day ever!!!” You know the kind, when you discover someone else finished the box of your favorite cereal, or you get a flat tire, or the shirt you want to wear is still in the washer, or your kid spills milk on your pants just as you’re walking out the door, or you leave your lunch sitting on the counter when you go to work, or you can’t find your favorite earrings, or your cable goes out and you miss your favorite tv show, or you get a “C” on a test, or you get a parking ticket, or any number of things that seem to happen to people on a daily basis. And my favorite (or least favorite, depending on your point of view) is how I can now put my own childrens' illnesses into perspective. If Brayden has a cough, or Kellen throws up or has a head-cold … yes, I feel bad for them. Yes, I comfort them and give them medicine and baby them just a bit. But I do NOT walk around believing (and complaining to anyone who will listen) that this is just the worst day EVER because my child is sick. (Or because I dropped the mayonnaise jar and it broke on the kitchen floor, or something equally inane.) When someone tells me how terrible their day has been, I want to look them in the eye and ask, “I’m sorry … did a doctor tell you today that your child has cancer? Because if not, then I don’t think your day was that bad after all.” And while it might sound harsh, an attitude like that is also sort of empowering. People don’t tend to whine around you when they realize they are not getting a smidge of sympathy.

4) The flip side of my crappy-day reason is that having known a TRULY crappy day, the day Kendrie was diagnosed, I realize there are people having much, much crappier days then me and it helps to stay in balance with my own feelings. I don't resort to throwing myself pity-parties near as often. Yes, I still gripe when the microwave breaks, or my kids are fighting, or the dryer goes out, or I burn dinner, or any other number of annoying things happen. It’s life, after all, and some days just don’t run smoothly. But I’m able now to remember that a crappy day is OVER at midnight and you get a fresh start the next morning. And as long as I don’t hear that one of my children has cancer ….. or has relapsed … or worse, which parents everywhere are forced to hear on a daily basis, then I know my day is really not that bad after all, even if the dog did throw up all over the living room carpet. And that’s empowering, also, to know that every 24 hours you get a do-over.

Obviously, I’m all about the empowerment. I just need to figure out a way to make weeping in public seem empowering, then I’ll be all set. :)

5) And ok, it’s trite and hackneyed, but I honestly do appreciate the good moments a little more. Sure, I still get upset with my kids (understatement of the year.) Not every day is gloriously happy, full of bunnies and rainbows, but I don’t take it for granted anymore. And while I know I’m not the best parent on the planet (Shoot, I’m not even the best parent in North America … or in Georgia … or in Byron …. Or even in my own house!) I do treasure the good moments, and enjoy them, and never forget to tell my kids I love them (when I’m not yelling at them for being obnoxious hooligans.)

So that’s it, my list of five things I can be thankful for *because* of cancer …. Because I will never be thankful for cancer. But I can be thankful for the changes it has brought about in me, hopefully for the better. (again, except for the crying …. I’m still trying to figure that one out!)

Hope you are all having a great week,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I’m getting so close to the end, I almost forget there is supposed to be a worst part every day!

BEST PART ABOUT HAVING CANCER TODAY: No doubt, hands-down, going with my family to the Immunization Clinic on base today and watching while my dad, my mom, Brayden and Kellen ALL had to get their flu shots and knowing I already got mine during my last spinal tap!! Can you believe my mom said “Ouch!” louder than my brother or my sister? Obviously, courage doesn’t come with age, or she would have been the bravest one there!

WELL, *THAT’S* AN UNUSUAL CHOICE OF WORDS.

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.

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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,
Kristie

QUOTE OF THE DAY:

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?”

BITTERSWEET

***Monday afternoon update***

Once again my heart is heavy and the news I have to share is terrible. Haley Vincent, the beautiful girl in the turquoise shirt in the Chili's picture at the top of this page, passed away this weekend. I am simply stunned; we just had dinner with them last week. We went out of town and I wasn't even aware Haley had become suddenly, critcally ill until today, when I learned of her passing. Her mother Cheryl and I have become online friends this past year or so and this family is a good one; I'm sure their hearts are broken right now, and mine is also, for them. Haley has a beautiful voice and I know the angel-choir in Heaven is even better today ... but that doesn't diminish the sadness we are feeling down here on Earth. All my condolences to the Vincent family; I am so sad for them and the loss of their beautiful daughter Haley.

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***Friday morning update***

It is with a sad heart I tell you that Clare from Maryland passed away yesterday, after a brave battle with her ALL relapse in May and transplant in July. Like many of you, I have followed Clare's story closely these past few months and have been so touched by the unwavering love, support and dedication her family has shown. This is every parent's worst nightmare, and I wish I had words adequate to express my sympathy to Clare's parents, Karen and Benno, and sister Phoebe. Please visit Clare's site and leave her family a note of condolence and support.

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78 Days to Go

Autumn has always been my favorite time of year. Always, always, always. Since I was a little kid and my parents used to have friends over to watch the Sooners play, and I would eat myself sick from the relish tray of cheese cubes, Vienna sausages, and sweet pickles (who says we didn’t have class?) -- since I was old enough to enjoy back-to-school rituals (yes, I was one of the dorks who loved going back to school each fall)…. shopping for supplies, new school clothes, even the smell of freshly-sharpened #2 pencils. Knowing that football season is starting -- that’s the absolute best. I am a huge college football fan. The State Fair (corndogs and caramel apples; need I say more?) The drop in temperature, the chill in the morning air, the beautiful colors of fall leaves, dragging my sweaters and sweatshirts out of the garage, pumpkin patches, hay rides, even that smell you get the first time you turn the heat on in the house. I have **always** loved this time of year.

Autumn in Georgia isn’t quite “real”. Although my calendar tells me it is officially “fall”, it is 90 degrees with 90 percent humidity. We’re still wearing shorts and sleeveless tops and sweating away the afternoons. Leaves don’t really change (at least not for long) and our two local pumpkin patches both take place in church parking lots, on asphalt. No meandering hay rides or corn mazes there. But that’s ok. I can envision myself in New England, hiking through the forest trails, crunching the fallen, golden-red leaves beneath my Doc Martin hiking boots. (Me? Hiking? Ok, it’s only a fantasy!) So even in Georgia, thanks to my imagination, autumn is still my favorite time of year.

Now, thanks to leukemia, autumn, while still my favorite, is bittersweet to me. Two years ago, I was apologizing to Kendrie’s pre-school teacher for not being able to chaperone her class field trip to the Georgia National Fair. “I’m sorry, Mrs. C. It’s just a virus, I’m sure, but since she’s still running a fever, I don’t think we should go.”; wondering if the teacher could bring me back a caramel apple. Two years ago, I was outside with Brayden’s Brownie Troop enjoying the crisp evening air when Blaine called me, to say, “Something’s really wrong. … she just fainted on the porch. I think we should take her to the emergency room.” Two years ago, my only view of the changing autumn leaves was from out the ambulance window, as my daughter was taken to Scottish Rite hospital to begin her treatment for leukemia. Two years ago, I brought my youngest child home from the hospital and then took my older two children to a pumpkin patch at a local church. Watching them enjoy picking out pumpkins, the bright sunlight in the clean, cool air --- how could life be any more surreal? My daughter has CANCER for goodness sake, how dare the fall weather be so beautiful? Two years ago, I took my youngest daughter trick-or-treating for Halloween, dressed in the Superman costume that she had picked out months before; home from the hospital only a few days, her face already puffy from steroids, her expression sad and confused, her legs too tired and painful to walk far, so we pushed her the entire way in a stroller, until she begged to go home. Is that how a four-year old should enjoy Halloween?

This year, I’m trying hard not to dwell on the “bitter” part of fall, but to focus instead on the “sweet”. Kendrie is doing well, nearing completion of her twenty-six months of chemotherapy. I don’t know if it’s over for her ….. as we discovered all too well, there are no guarantees on this ride called LIFE. But hopefully this will mark the end of her battle with leukemia and soon be no more than a blip in her rear view mirror. My other two children, while obnoxious as hell some days, have remained healthy these past two years. I have most definitely learned that that is the best you can hope for. We have made friends with families whose children are doing well …. that is sweet. Other families have children who are struggling … unquestionably, that is bitter.

It makes me sad that no matter how clean the air, how cool the morning, how beautiful the leaves, or how viciously the Sooners kick Longhorn tail, I can never take autumn at face value again. I will never see a pumpkin that I don’t remember that day in the pumpkin patch, trying vainly to carry on a normal conversation with the worker and not break down crying. I will never carve pumpkins with my kids without remembering the year Kendrie didn’t have the energy to get off the sofa and take part. No matter how much fun she has this year, running from house to house on Oct 31st, gathering all the sweets and goodies she can carry, I’ll never forget the year she cried to go home and lay down. I don’t think I will ever feel a cool fall morning without remembering that stretch of mornings after diagnosis when I never left her hospital room.

My rose-colored glasses appear to be working in reverse. Although I still love autumn, I no longer embrace it without hesitation, enjoying only the sweet. There is no way to forget the bitter --- the sadness and fear that struck so deeply that one beautiful, crisp autumn day. Fall is tainted, just a little.

But with the experience we’ve gained throughout this journey (I hesitate to say "wisdom" or "maturity", for fear those of you who know me will laugh!) perhaps bittersweet isn’t such a bad thing. Maybe appreciation earned is better than blind appreciation? Who knows? What I do know is that as I type this, I can hear my husband and my children outside my window, playing football in the front yard. The temperature has not fallen and the leaves are not changing, but for this moment, I will do my best to appreciate the beginnings of autumn. (Now, where is that cooler weather???)

Have a great night,
Kristie

AM I CRAZY? OR JUST PARANOID? OR BOTH?

Sunday, Noon, Update

Well, if someone had just TOLD me that all I had to do to get Kendrie sprung from the hospital was have a mini nervous breakdown, ramble in public about my fear of a relapse and dirty socks, and call Blaine in for a night of reinforcement .... I could have done that a week ago!! :)

The oncologist came in this morning to let them know she could come home --- Blaine promptly called me on the cell phone and made the doctor talk to me (smart man, my husband.) Her counts are up a wee, itty bitty bit, and she hasn't had any more leg pain or fever, so home it is. We'll check counts at least once or twice this week, and have clinic scheduled for the 13th. Any fevers or pain in the meantime and it's back to the ER we go. But I have great faith that won't happen. (and if it does, I will be much better prepared this time, with shampoo and a blow dryer, ha!)

Well, if you'll excuse me, I have hamburgers and watermelon and sparklers to buy. (Not really about the sparklers .... I am a firefighters daughter and have an inborn fear of firecrackers, but we'll still be celebrating this 4th of July, if for no other reason than being back as a family again.) Thanks again for humoring my ranting this past week .... have I mentioned how much I adore all of my Caringbridge family?? :)

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165 Days to Go

I had no idea the damage that eight straight days of filtered air, fluorescent lighting, hospital cafeteria food and constantly-interrupted sleep could do to a person. Specifically, to me. I haven’t looked this bad since my last scrapbooking retreat, when my friends and I cloistered ourselves indoors with 80’s music, bottomless gallons of soda and vats of peanut M&Ms for 72 straight hours. And that was for FUN.

When I took Kendrie to the Emergency Room at Childrens Hospital in Atlanta last Friday night, I certainly suspected we would be kept overnight. Possibly even two nights. So, being the organized, prepared Mom that I am, I packed an overnight bag. A single overnight bag for the two of us. I packed us each a change of clothes and threw in a few snacks, since you never know about those hospital cafeterias and vending machines.

And as you know, I wound up staying eight nights and days. I am home now, having traded off with Blaine for a day. Kendrie, of course, is still in the hospital. I had to come home and make drastic restitution to my overnight bag. Here are some of the things it did NOT contain:

Clean socks for me.

Make-up, face cleanser, or moisturizer of any kind.

Shampoo, conditioner, blow dryer, or curling iron.

Tweezers for plucking the gray hairs that grow out of my head at an alarming rate.

A mirror (perhaps in hind-sight that is a good thing.)

Enough clothes or pajamas for either of us.

Any crafts or activities, except for the portable DVD player (more on that later). Thanks so much to Regina and Madie for visiting and rescuing us in the crafts department!

All I can say is thank goodness for the washer and dryer available to families on the Oncology Floor, and for the deodorant and toothbrush I *did* think to put in, otherwise the entire nursing staff would have been calling me "Pigpen" and commenting on the cloud of filth and dust that swirled around me when I walked the halls. As it was, I wore the same pair of socks for an entire week and gave up caring if my hair was brushed when I walked to the vending machines.

I realize in the world of pediatric oncology, eight days is a drop in the bucket. Check out Victor, who has been in the hospital for two months since his transplant. Now *that's* a long time. And I’ll be the first to tell you that the facilities at Children’s Atlanta are more than decent. They offer private rooms with private restrooms, so even though the tubs are tiny and the towels are thin and apparently the laundry staff has never heard of fabric softener, at least I was able to take quick showers in peace. Each room has a small sofa that folds out to a small bed, so at least I wasn’t sleeping in a chair, or worse, trying to fit my big butt in Kendrie’s bed with her (except for the times each day I *chose* to do that for snuggling!) Children’s also allows parents to order room-service trays from the cafeteria to be delivered to the room, so you don’t have to leave to go to the cafeteria if you don’t want, unless you’re really jonesing for a Twix or Snick ….. er, I mean, a healthy apple or banana.

So when I got in my car tonight to drive home and looked at my reflection in the rear view mirror, I had to admit the wan, sallow, stressed-looking face staring back at me couldn’t be blamed completely on the amenities, or on the fact I had gone eight days without sunshine or fresh air. This is the face of worry. And this is why cancer sucks.

Honestly, really, truly ….. leukemia hasn’t been that bad. (Easy for me to say, I know.) But overall, Kendrie has done very well with treatment. No side effects too drastic or challenging and she’s plugged right along so far. We managed to go twenty months dodging the inpatient bullet, something that amazed all the doctors and nurses this past week. And maybe it’s just that I’m unaccustomed to hospital stays and the emotions and stress and fatigue that go along with them … but I can tell you without a doubt that last night (actually, early this morning) I spent 120 of the most frightening moments I have had since Kendrie was diagnosed. And it was a harsh reminder of why cancer sucks.

Her counts, as you know from following the past few journal entries, haven’t bounced back as quickly as we would like. Or even as quickly as “normal” (whatever the heck “normal” is in this insane world.) But like the oncologist said, every kid is different and we’re still no where near the world record for longest time with low counts. Every hospital stay, every bug, every illness, can be different. Maybe this is just a particularly harsh virus. Maybe her body is simply tired from twenty months of chemotherapy, especially considering she not only has never had a break from chemo, but has been on 125 percent for months! Maybe the reason her counts aren’t going up is because what few white cells she IS producing are going straight to the sores on her tongue and heiney, healing those. Whatever. I’m perfectly fine with all those excuses.

But last night she was pre-medicated at 2:45 am (don’t even ask) to finally receive her blood transfusion. She hadn’t been to bed yet (again, don’t ask) and I just knew the benedryl and tylenol she received would knock her completely out. Instead, just a few minutes later, she started tossing and turning. And complaining of leg pains. Then complaining a little louder. Until, fifteen minutes later, she was literally screaming about the pain in her legs, writhing in the bed and begging me to make it stop. We tried hot packs, massage, even morphine. Nothing touched the pain. Do you know how difficult it is to be calm and comforting on the outside for your child, while your insides are frantic, wondering why this is happening and fearing the worst?

Logically, I knew the leg pain could be caused by any number of things: maybe the bone marrow was finally kicking in and starting to produce cells-- that can be painful. Maybe the week off chemo precipitated a growth spurt-- that can be painful. Maybe it was a reaction to the benedryl and tylenol, although technically they should have *helped* with the pain.

Of course, cancer parents everywhere know where my mind was going. What are the primary symptoms at the time of almost every kid’s diagnosis? Bone pain, low counts, and fevers. After listening to her scream and cry until 4am, feeling powerless to do anything about it, and then lying awake in bed with her, rubbing her legs until almost 5am and trying not to cry in front of her the whole time, you can guess exactly where my imagination was racing. I was tired, I was stressed, I was terrified. When the doctor came in to talk to me this morning, I asked about a bone marrow aspiration to rule out relapse and promptly burst into tears. (Maybe I needed more than three hours sleep?)

In the light of the day --- even the fluorescent light of the hospital room --- I know I was over-reacting. Most likely. Probably.

Kendrie woke up in a good mood, ate well today, and never complained of any kind of leg or bone pain. Her counts? Still not up. But the oncologist told me they are not yet worried. Promised me that if they *got* worried, they would tell us. They are still waving the “maybe you can go home tomorrow, depending on what her counts look like” flag in our faces …. Taunting us.

So you see, that is the “sucks” part in a nutshell. That is the reason I can’t blame the lines on my face on lack of moisturizer, the gray hairs on my head on lack of tweezers. The scary fact that a child can be coasting along, not a complication in sight, and even something as minor as a virus can not only land you in the hospital, but force your mind to think thoughts better left buried. Why aren’t her counts coming up? Why did her legs hurt? Why can’t I just take a deep breath and have faith that a week from now I will look back and roll my eyes at myself for over-reacting that way?

There is no relaxing. Ever. Even when things are going well, in the back of your mind you think dark thoughts and are constantly on the watch for signs and symptoms of something wrong. Then, when they show up, you spend the better part of the early-morning hours making really irrational bargains with God.

I hate this. I was the mom who let her young children climb on all the park equipment (within reason) and didn’t freak out – too much -- when they ate bird poop off the playground. They wear bike helmets to ward off head injury, they ride in well-designed and properly installed car seats, and everyone is immunized and loved beyond measure. And still I can’t protect her from this. Sitting back, waiting for her counts to come up. Waiting to be sure the leg pain is nothing more than … well …. leg pain. Last night, lying with her in bed, holding the hot packs on her legs, I had the frantic thought that I needed a crystal ball so I could look into the future, see our family intact and reassure myself that everything would turn out ok. Then a cold fear settled into my stomach and chest as I thought ….. “If you really had the crystal ball, would you look? Or would you be too frightened of what you might (not) see?”

Crazy? Paranoid? You make the call.

Now, to address those of you who have so gallantly offered to bring or mail us some DVDs so I can get a break from Cheaper by the Dozen --- hey, thanks! Those are nice offers, but I actually brought about a dozen movies. She is watching the same movie over and over again by CHOICE! Although I put my foot down the other day and insisted she watch something else. I just couldn’t take it anymore. So we watched Home Alone 3, three times in a row. Maybe I should have kept my mouth shut? :) That’s ok … Blaine is at the hospital now and he can take a turn with movie duty.

And as far as the guestbook entry from Cristin from Virginia, for pointing out all the mistakes in Cheaper by the Dozen …. I don’t know whether to thank you or curse you, since now I will have to watch the movie again just to find the mistakes, ha!!! (I had already noticed the sunglasses mistake myself. Truly, a sign that I’ve seen the movie too many times!) :)

Well, thanks for letting me ramble. I hope I don’t seem irrational or melodramatic. I guess it’s what lack of sleep, and lack of control in a terrifying situation, can do to a person. I’m going to go take a long hot shower in MY bathroom, then have a long, deep sleep in MY bedroom, and spend tomorrow with my two oldest children who I have missed beyond measure this week. I’m sure by tomorrow morning my late-night fears will seem even more remote. If nothing else, the break from the movie should be good for my mental health. But thanks for listening, anyway. Is it sick that an online journal can be this cathartic? (Don't answer that.) :)

Kristie

PS Did you know that it is apparently possible, simply by getting up and down out of a recliner twenty times a day to get things for a small child, to pull a muscle in your left butt cheek? Truly, I am astounded by my own athletic ability.

PSS Happy 4th of July to everyone!

Melancholy

202 Days to Go

melancholy: 1. a gloomy state of mind; dejection 2. thoughtfulness; pensiveness 3. a condition of depression and irritability formerly attributed to an excess of black bile 4. affected with melancholy; depressed; a melancholy mood.

“Crazy’ by Seal is the song I always put on this site when cancer is messing with my mind. Before you jump to any horrible assumptions, let me be quick to reassure you that Kendrie is fine …. Obnoxious and ornery and fabulous as always. *I*, however, am feeling a bit of melancholy. I’m pretty sure it’s not due to an excess of black bile, so I am much more quick to point the finger of blame at cancer. Specifically, leukemia. Even more specifically, Relapsed Leukemia.

I received the sad news yesterday that another little boy I know with leukemia has suffered a relapse. I say “another” because he’s not the first patient who has relapsed in the past few weeks. Sadly, he’s not the second, either. Or the even the third … he’s the fourth child I know of in the past five or six weeks. And those are only the kids I know from my online list and/or my clinic. Excuse my French, but WTF???

I understand that there isn’t anyone to BLAME …. But I need somebody with whom I can be upset!

(Step 1. Melancholy
Step 2. Anger)

And I wish I could find a way to express my deep-seated well of fear that we might be next. Shoot, that *anyone* would be next is depressing. Even more depressing is that it WILL happen, to someone. Until there is a cure, no child is “safe” or “well” or “guaranteed” a happily ever after. Sailing through treatment doesn’t count for anything, hell, **FINISHING** treatment doesn’t count for anything, just ask Clare from Maryland. Like I’ve said over and over and over …. cancer can come back anytime, in anyone. Leukemia, neuroblastoma, sarcoma, medulloblastoma, rhabdomyosarcoma.... I sometimes feel like I will never take a relaxed, deep breath again. Unless you hook me up to a nitrous oxide canister, then maybe I could just breathe deep until Kendrie is 60 years old and I no longer have to worry about a relapse for her. That might be preferable to the worry that constricts my throat and my heart sometimes until I can hardly breathe at all.

Thankfully, that fear isn't something I always carry around like the bags under my eyes. Most days we are a normal family (much like the Adams family is normal) doing normal things (which pretty much means arguing and bickering) thinking normal thoughts (like how many more days until the kids are back in school?) Most days, anyway. But it's always there in the back of my mind, a teeny-tiny niggle that I just can't get rid of, like the insufferable relative who shows up uninvited at a family reunion and as much as you try to ignore them .... there they are .... sitting in the corner ....smirking at you ... and they're just not going away.

You know the other thing that annoys me? I don’t mean to sound ungrateful and I certainly don’t want to look a gift horse in the mouth, but Caringbridge’s new policy about “No linking CB sites” anymore frustrates me to no end. These relapse families NEED support, and encouragement, and well-wishes. Sure, I can list them in this journal and leave the sites up for a few days, but once I update the journal, the links are gone. Since we can’t leave anyone’s CB address up on our site permanently, or with an easy link, it’s extremely difficult to offer the kind of virtual support that I KNOW is out there …..

I sure hope SOMEBODY at Caringbridge is listening to the frustration….. parents are saying the visits to their child’s sites are less and less; fewer guestbook entries … I’ve certainly noticed a drastic decline in the guestbook entries on Kendrie’s site that start out “I know you don’t know me, but I found your site on so-and-so’s site …..” Personally, I loved those and am sorry that doesn’t happen much anymore. Caringbridge has announced it will be unveiling some "new and improved" technology changes on June 1st .... I sure hope they address this problem and realize the vast majority of Caringbridge families do NOT like the new policy! (grumble grumble)

I DO, however, appreciate those of you who have us book-marked and continue to check in and leave us messages of support. If you’re going to leave a message today, though, please visit one of these other sites and let them know you heard about them through Kendrie’s site. I’m sure they would all be happy to hear from you. As awful as it is to be told your child has cancer, every parent I know who has gone through a relapse says it is a hundred times worse when you hear *those* words. The first time is terrifying, even with your blissful ignorance. This time, they KNOW what these precious kids are in for.

Victor from Pennsylvania, who relapsed last February, but just had his transplant two weeks ago and is thankfully doing well so far! I'm sure they are tired of being in the hospital and could use some words of encouragement. Even with Victor doing great, it's been a long road to get here and they still have a long ways to go.

Cameron from Connecticut, relapsed last year and had a bone marrow transplant with his brother Chad as donor. One year past transplant, this April, Cameron's family found out he relapsed again. Please drop Cameron some well-wishes!

Caleb from Washington, just started his re-induction this past week for his relapse that happened earlier this month, only four months away from finishing his final chemo. So, three years of chemo down the toilet .... Caleb starts over on a tougher protocol. I'm sorry, but that just sucks.

Clare from Maryland, who also relapsed earlier this month after sixteen months off-treatment. Clare had been done with her treatment for almost a year and half, and BAM, out of nowhere, the leukemia comes back. I can only imagine her family had just started relaxing ....

Jake from Georgia This is the one I'm having the most trouble swallowing today, simply because I just found out about Jake's relapse yesterday, and also because Jake is the one kid on this list that we have met personally. We've visited with his mom and dad in the clinic on occasion, and oohed and aahed over his adorable baby sister. They are reeling, and Jake is scheduled for his BMA on Friday to find out the severity of the relapse (like *any* relapse isn't severe?) But I know they are praying for no bone marrow involvement .... as we all are. If you can go to Jake's site, there is a guestbook link just like the Caringbridge sites and you can leave his family a note of support, as well.

There are so many other kids on my online list who are following relapse protocols. Fortunately, most are doing well. I have to remind myself that even with a relapse, leukemia still has a good chance of being beaten. For certain other types of pediatric cancers, a relapse is a death sentence. Leukemia is not like that .... but the path that lies ahead for these kids is not an easy one and I doubt any of the parents are sleeping too restfully these days. Please help lighten their loads by letting them know you are thinking of them.

Thanks,

Kristie
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KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Hello?! Did you read that note??? I am not even sure what all that means, but I know it's pretty crappy.

BEST PART ABOUT HAVING CANCER TODAY: My mom felt so sorry for the school nurse and the fifty bazillion times I went to her office this school year that we took in a bouquet of flowers for her .... I think she really liked them. That made me feel happy.

"PASSING THE BATON; A REST STOP IN THE MARATHON"

JESSE OWENS! BRUCE JENNER! ---- MICKEY MOUSE?????

300 Days to Go!

Wish us luck, we are loading up the car and getting ready for our Disney trip! I keep reminding myself, as long as I don’t forget her chemo, there’s nothing we can’t buy at Wal-Mart, right? (Repeated over and over and over to myself, in an attempt **not** to pack the entire house, which I have a tendency to do, as Blaine can unhappily attest!)

Anyway! In mentioning to friends and co-workers recently that we were fixing to take Kendrie on her Wish Trip, Blaine and I noticed a few interesting reactions. Friends were, of course, happy for us and wished us well. Those who don’t know us as well either seemed startled, as they assumed this must mean Kendrie had taken a turn for the worse, or they seemed perplexed that we were entitled to a trip --- after all, isn’t that for really, really sick kids?? Terminal kids? As those of you who follow this journal already know, I was also wondering if we were entitled and feeling a tad guilty for taking a Wish Trip. Is this “appropriate” for Kendrie, doing as well as she is, to be the recipient of such a kind gift?

Wednesday morning, I had one of those periodic parent-teacher meetings with Kendrie’s Pre-K teacher. Yes, she’s brilliant, yes, she’s a leader, yes, she’s the greatest thing since sliced bread (Kendrie, not the teacher) …. we already knew all that. Her teacher said absolutely no problem with her missing a week of school for a Disney trip, but seemed surprised it was a Wish Trip. Then, when I mentioned she would still be gone the following Monday for her chemo treatment in Atlanta, the teacher …. the one who has been with her all year …. said, “Still? She’s still getting chemo?? Even with all that hair?”

I was completely taken aback by that …. has she not been paying attention??? Where has she been? Of course, the assistant teacher is actually the one who works more with Kendrie, has taken such an interest in her, and is the one I warn every month when Kendrie is on steroids -- you know, when it’s important to notify the school staff of the upgraded tsunami-storm alert warning.

So I got to thinking …. do people not realize she is still on chemo because she looks good and feels pretty good and plays hard and does well in school? Does the treatment for leukemia go on so *bleeping* long that people outside close friends and family just forget about it?

For the record, here is a glimpse into Kendrie’s current treatment plan:

She is on 28-day repeating cycles of chemo.

Every night she takes one and a half pills of the chemo drug 6mp; except for Sunday, when she only takes one 6mp pill. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite.

Every Tuesday night, she takes seven and a half Methotrexate pills, an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches.

Four times each weekend (Sat. am and pm, and Sun. am and pm) she takes a dose of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts.

For fun, we’ve added to the mix one half of a Claritin pill each night, which has helped quite a bit with the cough she hadn’t been able to shake since Christmas.

For the first five days of each 28-day cycle, she takes the steroid Decadron; one pill each morning and one and a half pills each night. Decadron is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes (ya think?) increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability. That sounds just like me when I am pregnant. I have to laugh at that last one; "extreme irritability" … I’m taking these side effects listed directly out of Nancy Keene’s book “Childhood Leukemia” and while we fortunately don’t get most of them, boy oh boy, do I agree with THAT one!

She still has not learned to swallow a pill or gel cap, so we crush all her meds and give them to her in applesauce with a water chaser. By my estimation, by the time therapy is over, she will have eaten enough applesauce to fill an Olympic sized swimming pool.

Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at the clinic in Atlanta. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.

And last but not least, once every twelve weeks she has a spinal tap (ie, lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can’t cross the blood-brain barrier.

That’s pretty much it in a nutshell; the maintenance portion of Kendrie’s treatment protocol. The first ten months of therapy were considered “intense” …. This maintenance portion is less harsh, but lasts another sixteen months. So, two years and two months total. If Kendrie were a boy (like she prays for every night, ha!) she would get an additional year of maintenance therapy due to the risk of testicular relapse. If she were to relapse, we would either be looking at some form of transplant, or we would scratch all the chemo she's already done and start over, from square one, with a harsher protocol.

This month, she only missed one half day of school because she wasn’t feeling well (it’s usually one or two half days a month that she misses due to the steroids) but we did have our first episode of “chemo burns” on her palms; small, white blisters all over her palms that itched like crazy. The school nurse called me twice this month to request permission to give her oral zofran, her anti-nausea medication. The school nurse also calls me at least once or twice a week to update me on the status of viruses/flu/chicken pox/etc at her school. She is a HUGE blessing to me!

So, where exactly am I going with all this???? Besides boring you to tears?

I think (and am grateful) that through local organizations like Camp Sunshine and The Lighthouse Retreat, that we Georgia families are in the wonderful position of meeting lots of other families, often dealing with other kinds of cancers. Some of my newest, most-admired friends are the moms of kids being treated for medulloblastoma, neuroblastoma, and rhabdomyosarcoma. Another woman, who I am so happy to have met and consider a friend, is a mom of a germ cell tumor patient. Her site is Mary Grace. She and I and another mom were having dinner a few weeks ago (Kendrie was the only kid there with hair, how odd did that feel?!?) :) and she was talking about Mary Grace's upcoming surgery. She was diagnosed last August and has gone through chemo, radiation, and now surgery to remove the tumor. I'm thrilled to report the surgery was this week and things went great --- Mary Grace is cancer free!! I truly couldn’t be happier for this wonderful family! And, I admit that I felt a twinge of envy that the treatment protocol for leukemia can’t be whittled down to six months, also. Then I felt ashamed of the envy, since these other cancers seem so much “worse”. I mean, even the doctors say leukemia is the “good” kind of cancer for your kid to get. Who knew there was such a thing???

I also got to spend time with past weekend with two neuroblastoma moms, Brandon's mom and Camp Jacks' mom. We talked about how some protocols are longer than others, and what some of the different protocols entail, and it was a good reminder to me that as envious as I might be of the shorter protocols, the optimistic survival rates for leukemia make it easier for me to face the challenge. Yes, the long treatment stinks and yes, some kids don't handle the side effects of chemo as well as Kendrie has. But ultimately, the vast majority of kids diagnosed with leukemia will go on to lead long and healthy lives. I can't imagine being told my child only has a 30 or 40 or 50 percent chance to begin with ........ and heaven forbid they relapse, because there is NO cure for relapse with some of these cancers.

Camp Jack's mom summed it up perfectly: Their (neuroblastoma) treatment is like a sprint-- fast and furious and they're desperate to get to the finish line. Leukemia treatment is like a long distance, marathon run. We need endurance and longevity and sometimes it seems like the end will never get here. Does that mean their treatment is easier because it's shorter? No, of course not. Or that our treatment is any less terrifying because the chances for survival are better? No, of course not again. We're all in this together. Truthfully, I feel fortunate to have met other families who can help me keep it all in perspective. Ours sucks; theirs sucks. Pediatric cancer pretty much sucks. Did you see the movie Legally Blonde 2, where Reese Whitherspoons’ character instantly bonds with a woman she meets who wears the same sorority ring as she does? Believe me when I tell you there is a bond you feel with another parent who has also heard the words, “I’m sorry, your child has cancer”. The kind of cancer, and the length of treatment, don’t matter. They all stink.

My point, although it took me a good twenty minutes and who knows how many words to get here, is that yes, Kendrie looks good and feels good …. so good that her own teacher thought she was done with chemo (!) But she has still gone through a lot and I’m not going to minimize that just because our outlook is hopeful. Next week, when we are wearing our Make-A-Wish buttons at Disney like the badges of courage they are, and being allowed to jump to the front of lines, I refuse to feel guilty about it just because she is doing well and doesn’t fit the mold of “really, really sick Make-A-Wish recipient.” It has been a life-altering sixteen months so far. We are ready for a brief respite from our marathon, where we can pass the baton to a big black mouse with funny pants, even if only for a few days. My plan is to return home refreshed and rejuvenated, ready to tackle the remaining ten months head-on. And, do what I can in the meantime to encourage our fellow racers …. whether they are sprinting to the finish, or trudging along in an endurance race. We are all racing … we all get tired at times. So, there it is. My justification for taking my kids on this Wish Trip to Orlando. For what Kendrie has gone through and for what Kellen and Brayden have sacrificed (whether they knew it or not) along the way.

One last mention before I sign off for the night (actually, at this point, it will be technically “morning” before I get the update finished) -- Kendrie received her first hair cut yesterday. Not my choice, and not something I am happy about. I had taken Kellen for a desperately-needed trim and Kendrie announced about a million times that she wanted a haircut. She’s been asking for a month or two, ever since it got too long to spike on the top. I kept asking her if she was sure because deep down I was hoping she would change her mind. But she insisted, so I said ok and up into the chair she climbed. I’ll admit I got a little misty-eyed, thinking about how far we had come and what a milestone this was. Then, I’m not quite sure what the hairdresser was doing, but she mentioned something about spiking it and yet retaining a sense of femininity at the same time. So, Kendrie is now the proud owner of the World’s Worst Pre-School White Trash Mullet you have ever seen in your life. And, she refuses to wear it spiked. That was money well spent, don't you think? Don’t be surprised when you see me putting those funny mouse ears on her head in every picture from Disney. How long until it grows out again???

We’ll update when we get back!! I hope you all have a great week,

Love,
Kristie

PS. I would like to let all of you know that I was donating blood on Tuesday and the technician mentioned to me that the state of Georgia is critically short of blood right now. They are even planning to do a media-appeal for donors. If you have a spare hour, please consider donating. ALL states, not just Georgia!! Thank you!
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KENDRIE’S PERSPECTIVE:

My perspective is that my mom is a blabbering fool and there is no need for me to make this update any longer. See you in Florida, baby!

“WHAT’S GOING ON WITH US”

and what’s *NOT* going on with us

316 Days to Go

So, not much has been going on with us since Kendrie’s doctor’s visit last week. I don’t think I mentioned in her journal that once again, for the 5th month (out of six) since we started long-term maintenance, her counts were higher than they are supposed to be. After the first three months of high counts, they increased one of her medications. Counts went down for one month …. Then right back up for the last two months. So now they’ve increased another of her medications. What a little over-achiever she is. She’s on 125 percent of chemo for her height and weight. Our online group has a new term for kids like Kendrie: they’re “Downeying” … as in, they can process pharmaceuticals faster than Robert Downey Jr. We have to take her in to the base lab for a local blood draw next week to see if the increase is having the desired result n her Absolute Neutrophil Count. So far, all I can tell it is accomplishing is upping the “sibling argumentative” quota around here. (sigh) We can’t even blame steroids anymore, she finished those on Sunday. And the other two kids aren’t on them. Although the dog *is* on them …. does that count???

Not for one single solitary moment have I forgotten, or taken for granted, how well Kendrie has done with her treatment. She still has this lingering cough, so we've had to add yet another medication to her litany of night-time drug cornucopia and oh, yeah, there’s the whole cancer thing, but compared to many of our Caringbridge friends, our life is cake. So to put it in perspective, here is what is NOT going on with us lately:

We are NOT having surgery on Valentines Day to remove our sacrum and any residual germ cell tumor like our sweet Atlanta friend Mary Grace. We ARE praying for the surgeons to have brilliance and clarity that day.

We are NOT thousands of miles from home in NYC, undergoing surgery and chemo for neuroblastoma, anxiously awaiting the day we can travel home, like Kylie. We ARE praying for healing and safe travels for Kylie and her family.

We are NOT anxiously awaiting scan results to find out if the spots that showed up on our lungs during our routine scan last week are indeed new neuroblastoma spots… which would be devastating, like Chandler. We ARE praying for good news from today’s scans ….so many people are praying.

We are NOT in the hospital with relapsed ALL, having our bone marrow transplant TONIGHT, like Meguire. We ARE praying for Meguire to do well during transplant, and for this to be the beginning of a new and healthy life for him. Praying also for his family during this stressful time, as they are separated, in a hospital far from home, and will be for months.

We are NOT limping around town in our new bright orange cast, suffering from a leg fracture after our chemo, radiation and two stem-cell transplants, like Camp Jack. We ARE thrilled to know it’s “just” a broken leg!! When you are a cancer parent and fearing the symptoms indicate a relapse, the news that it’s nothing “more” than a fracture is joyous indeed!

We are NOT home with our family, suffering from relapsed Ewings Sarcoma, facing the reality that time is short, precious and limited, like Stephanie. We ARE praying fervently that Stephanie continues to feel well and enjoys her time with the family who loves her so much.

We are NOT hours from home, in a hospital PICU, feeling depressed and sad, only a few days after experiencing an unexpected “brain bleed” that was so severe it took us off the waiting list for the liver transplant we desperately need, like our online friend Haley. Haley and Cheryl, we ARE praying for Haley’s continued recovery and want you to know we will do whatever we can to help.

We are NOT in the hospital with relapsed ALL, just days out from the transplant that will hopefully save our life, like Taylor. Shawnee, we ARE searching for more (cute!) pediatric surgical masks for Taylor and will keep your entire family in our thoughts and prayers.

We are NOT still reverberating from the news that our ALL came back almost a year after we finished treatment, and are now facing the beginnings of our relapse protocol, like Matthew. We ARE hoping your inpatient chemo trip goes well this week, Matthew, and HUGE kudos to so many of your friends for joining you in the head-shaving Buzz-Off! Great pictures, by the way!

We are NOT one of the two families I know who not only have one child who has relapsed in their ALL protocol, but has another sibling also fighting an ALL battle. People without a sick child say to me, “I just don’t know how you do it” and I get annoyed. But I look at Kevin and Brian’s mom Lisa, and I look at Ashley and Ryan’s mom Robin, and think to myself, “I am so amazed and impressed with how gracefully and tenaciously they handle all this ………. and I just don’t know how they do it.”

And lastly, we are not the parents of Marcus or Carter or Hayley, who I can only assume are struggling with finding their peace here on earth while their beautiful children are waiting for them in Heaven. Or Garrett’s parents, who just today had to pick out his final resting place and make funeral arrangements. We ARE praying for each of these families and can only hope their burdens are lifted by knowing how many lives were touched by their children, and how many care so much for them.

So, if you’re one of the wonderful people who come to our site on a regular basis and check in, and take the time (much-appreciated, by the way!) to sign our guestbook, I want to say thank you. If you only have time to sign one guestbook today, please skip ours and sign one of the sites I have spot-lighted above. We love the messages, too, but I think some of these families need the support a little more than we do right now.

Thanks,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

Well, geez, did you read that list above and see how many innocent kids are struggling with this cancer monster? I mean, it’s even more unfair than when Kellen grabbed the last Capri Sun out of the fridge and drank it down like a greedy loser-head before I had a chance to get it!

BEST PART ABOUT HAVING CANCER TODAY:

The fan-tab-u-lous care package my friend Haley sent me (and my stinky brother and sister ... yes, Mom made me share!) in the mail a few days ago ….. but when my mom went to the site to thank her (Haley is waiting for her own liver transplant!) she got some bad news. So now even my best part is tainted a little.

Conversations with Kristie

(or, Proof Positive that I am Certifiably Insane)

321 Days to Go

Kendrie had her monthly clinic visit to receive the chemo drug vincristine in her port (the device in her chest) on Tuesday. This was an even-more-special day, as every third month, she also gets “sleepy medicine” in her port and they put another chemo drug, methotrexate, in her spine. Yippy-Skippy! (oh, sorry, that little “splat” you felt was the sarcasm dripping.)

Life is indeed different, now that we are only going to the clinic once a month. I’m sort of out of my clinic groove, if you know what I mean. Used to, as I drove the 225 miles round trip each week (sometimes twice a week,) I had meticulous planning and forethought …. the right bags packed with the right snacks, activities, meds, etc. The correct “extras” in the van …. stroller, pillow and blanket, port-a-potty (hey, those steroids at the beginning were vicious!) and enough antibacterial wipes to clean every restaurant booth from here to Atlanta. I had the exits up and down I-75 wired --- I knew which exits had the best restaurants and the cleanest gas-station bathrooms, not to mention the fast food places that sell pop in the Styrofoam cups like I prefer. And, I knew the exact areas where I did and did not get cell reception.

Tuesday, as I made the trip with Kendrie to the clinic, it occurred to me that while some things are the same, many things are different. I made sure to pack a snack bag since she wasn’t allowed to eat before the spinal tap and I knew she would be hungry afterwards ….. but it wasn’t until I was actually packing the bag I realized I no longer have a stockpile of her favorite snacks and drinks. I didn’t even mess with an activity bag, just threw a few books and her favorite stuffed animal in the car. I remembered that I needed to pack a blanket, so I could cover her up for the half hour she is required to lie flat after the spinal …. but couldn’t find the fleece blanket I used to take. Our online friend Lisa from San Diego was kind enough to make and send the kids “rag” blankets last month ---- thank goodness that was close at hand because that’s the one Kendrie insisted on taking. (Lisa, your thank you note is on its way --- the kids LOVE them!) I forgot the pillow entirely. The port-a-potty was thrown away a long time ago. Thank Goodness.

Perhaps the biggest change I noticed, however, was my own mind-set. Kendrie watches movies on the portable dvd player while we’re driving, so I’m left pretty much alone with my thoughts. Used to, I spent most of the two-hour drive preparing myself for the visit; thinking about what procedures she’d be having done and planning my list of questions for the nurses and doctor. On this Tuesday, instead, my mind was really wandering. Just to show you how harebrained this whole leukemia journey has made me, I thought I would share with you some of the conversations (plural!) I had with myself, at various times throughout the drive, and throughout the day:

Kristie: “So, how’s it going?”
Self: “Oh, fine, thanks for asking.”

Kidding. It was more of a meandering, aimless, one-sided conversation that went something like this:

“Wow, look at all the dead kudzu on the trees.” (If you don’t live in Georgia and are unfamiliar with this anomaly of nature, kudzu is a vine-like plant that grows up and over anything that moves at less than 5 mph and chokes the very life out of it. I’m pretty sure turtles and elderly people will both be endangered species here before too long.) “I don’t ever remember seeing kudzu dead like that on the side of the highway. Was it dead last winter when I would drive Kendrie to her chemo appointments? Holy cow, last winter? It’s amazing to me that we’ve been doing this for over a year. I’ll have to remember to check next year to see if the kudzu dies again. Wow, that’s even more amazing, that we’ll still be doing this a year from now. Well, no, technically we won’t. By next January, she should be done, woohoo! Yep, that’s good news. Shoot, there went the exit with the drive up ATM. Damn it. Gotta remember to pull over and put the numbing cream on Kendrie’s port and her spine before too long …. what was the exit with the Chick-Fil-A again??? That way we can grab some lunch since it’s almost 11:00 …. no, wait, she can’t have anything to eat until afterwards. Just who schedules a five-year old to be NPO for an afternoon spinal? Hey, look, there’s a shoe in the middle of the highway. Who *does* that, anyway? Why would anyone throw a shoe in the middle of the road? Are they just driving along and decide they don’t like these shoes anymore? And why is there always only ONE shoe in the road? Where’s the other shoe? Crap, there goes that other exit I wanted. Boy, I’m really talking to myself a lot today … is it considered talking to yourself if you’re doing it in your head? Isn’t that actually considered thinking? I’ve got to remember to bring that blanket into the clinic with me, and my camera, too, since Catie and Mary-Grace will be there. I wonder if we’ll be able to go to dinner with them today. If we can’t, maybe I can order pizza from the new Pizza Hut Delivery Location that just opened by our house. Sure wish they had opened that thing back in our Induction Days, when all Kendrie would eat were those breadsticks. Wow, remember how obsessed she was with those breadsticks? Speaking of eating, where is that exit with the Chick-Fil-A? Where the heck did I put the numbing cream?”

And so on and so on.

Then, I had another bizarre conversation with myself while Kendrie was getting her spinal. They had her curled over on her side, fixing to start, while one nurse held her down and the other nurse made sure the meds were ready. The nurse-practitioner, who is performing the procedure, sits behind Kendrie and I sit in front of her face, trying to be a soothing presence, while at the same time not block the big screen that is showing Scooby Doo 2 (total crap, by the way.) The child-life specialist comes in and introduces me to a child-life intern, asking my permission for them to stay and watch the procedure. So there is a pretty full room, and Kendrie has started crying like she usually does with the “sleepy medicine” (some kids report feeling sort of drunk or giggly when they get it …. If this is how Kendrie acts when she gets drunk, she will be ostracized from every sorority function, as she is a mess.) As a mom, of course, it breaks my heart to see her upset and to hear her asking me, in that pitiful, slurred voice, “Are they done yet?” when I know they haven’t even started. So, as is our usual routine, I started rubbing her forehead and singing “You are my sunshine, my only sunshine” to her, in a voice I hope is comforting and calm. Thank goodness Simon Cowell isn’t there, is all I can say about it. Maybe because this was her first spinal in three months and I had sort of “forgotten” about them, maybe it was remembering exactly what we were doing to her, and why, and the fear of a relapse diagnosis each time she gets a spinal …. I don’t know …. But all of a sudden I started crying. Then my conversation with myself went something like this:

“Oh, for God’s sake you loser, pull it together. You have to be stronger than this for Kendrie, it’s certainly not going to help her any to see you cry. Why are you crying anyway, you dork?? Things are fine, she is fine, things will BE fine. Besides, that intern is going to see you cry and think you are a bonehead. So? What do I care what some stupid college intern thinks of me, anyway? Does her kid have cancer?? How would she know? Now why are you calling the intern names? Is it HER fault you are a cry-baby loser??? For Pete’s sake, pull it together woman!!!”

You know, I go along fine for months at a time, then wonder if the staff at Scottish Rite is surreptitiously calling child-welfare on me. Or perhaps Bellvue.

Then, like that isn’t proof enough of what a weirdo I’ve become (my long-term friends will perhaps raise an eyebrow at the past tense of “become”) let me tell you about the third and final conversation I had with myself at dinner. Well, no, it wasn’t the final conversation of the day … I still had the ride home from Atlanta to get through, but it’s the final conversation I’m going to share with you!

We had really lucky timing on Tuesday and had clinic appointments on the same day as two of our friends. Catie and Mary-Grace and Kendrie were all finishing up about the same time, so we decided to go out to dinner together. I’ve said all along that one of the perks (if you can call it that!) of having a kid with cancer is meeting other families going through the same thing. It’s a bizarre little fraternity, but we’ve met some amazing people this way.


"Kendrie and Catie, photo taken 01-25-05"


So we went to a local restaurant, than sat around talking afterwards. Mary-Grace’s dad Todd won all three girls stuffed animals from “The Claw” which pretty much made him the hero of the hour (thanks, Todd!) and the three moms were visiting about some of the other mutual friends we have all made. Mary-Grace and Catie both have lots of scheduled inpatient chemo, and have met lots more families, and know many more patients personally, than we do. So as we were talking about how they knew this family, or how they knew that family, and how everyone was doing, the following words actually came out of my mouth: “In a weird way, you guys are lucky to be inpatient so much. We haven’t been inpatient since diagnosis and I haven’t met anyone.” A few seconds later, when my brain caught up to my mouth, I wondered ….. holy cow, did I really say that?????

So I spent the next few moments vacillating between the self-recrimination of “You Idiot! What a completely thoughtless …. Not to mention STUPID, thing to say!!!” and the other thought process going on inside: “How odd is it that I’m sitting here with these two moms that I had never met, or even heard of, six months ago, and under different circumstances would never meet. Between the three of us, our kids have almost three years of chemo under their belts, brain surgery, shunts, radiation, more surgery planned next month, scans, MRI’s, more oral meds than any of us can count, spinal taps, bone marrow aspirations, one extremely undignified rectal exam earlier in the day (I won’t mention names, but let’s just say that a certain 2-yr old handled it with much more poise than *I* would have!) and yet, I’m having a perfectly lovely and wonderful time!”

Like the chorus of this song says …..
“But we're never gonna survive, unless...
We get a little crazy
No we're never gonna survive, unless...
We are a little...”
The lyrics might be dark, but the chorus is right on!! :)

So, maybe I’m a little crazy. (Perhaps the word “maybe” is un-necessary!) But if talking to myself and having inane conversations in my head gets me through it, which in turn gets Kendrie through it, then so be it. I feel blessed to have such wonderful people to get a little crazy with. Jenny and D.D., (Todd, too!) thanks for a wonderful meal ---- we think the world of you!

Love, Kristie

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KENDRIE’S PERSPECTIVE:

WORST PART OF HAVING CANCER TODAY: Well, it’s day 3 of Steroid Week, which loosely translates into “start crying the minute I wake up, until Mom gives up convincing me to go to school, so go back to bed, and then when I finally do get up, lay around on the sofa all day eating my weight in American cheese slices.” Hey, hang on …..

BEST PART OF HAVING CANCER TODAY: Same thing. Especially the part about the cheese.

KRISTIE'S PERSPECTIVE: But did she mention the 45-minute tantrum she threw yesterday because no one would play "Break the Ice" with her??????

Worry Appropriately

Week #18 of LTM

I hope you all had a good weekend; ours was calm and peaceful. I took the kids to see Polar Express today, which was fun, until we were leaving the theater and Kellen suddenly realized he didn’t get any popcorn. Never mind the Coke, M&M’s and Milk Duds he had. Life wouldn’t be any good unless he had popcorn …. and since he didn’t get any, things did get ugly for a few brief moments. But overall, it was a nice afternoon together.

I wanted to share with you a photo of Kendrie from Friday. I have no idea if the timing of that boy making fun of her hair was coincidental, or if it just so happens that her hair is finally getting long enough to style in some way, but she came to me Friday morning and told me she wanted to wear her hair “spiky” to school. So, we experimented with gel and hair spray and I though the final result was cute as a button. Boy-ish, yes, but maybe that was her intent after all.




Lastly, I’d like to share an excerpt from a book I am reading titled “Protecting the Gift” by Gavin De Becker. It’s about keeping children safe and protecting them from violence, and it’s a really good book with regard to safety precautions and good ole’ common sense. I’ve had it for years and re-read it about once a year as a refresher. This is the first time I’ve read it since Kendrie got sick --- and although the point of the book is violence and safety, the following paragraph struck a chord with me as something that could possibly pertain to parents of children with illness as well:

“Children raised by chronic worriers may or may not become victims of violence, but it is absolutely certain they will become victims of worry. In "The Heart of Man", Dr. Erich Fromm tells of a mother who is always interested in dark prognoses for her child’s future, but unimpressed with anything favorable that occurs: “She does not harm the child in any obvious way, yet she may slowly strangle his joy in life.” This is an interesting way of putting it given that the literal meaning of the word worry is to strangle and choke. People who grew up smothered by unwarranted fears that haunted them into adulthood will see the wisdom in this saying: Everybody dies, but not everybody lives.”


The obvious difference here, in my simple opinion, is how can the parents of a chronically ill child NOT worry? Our worry is most definitely NOT unwarranted. Worry about medications, side effects, and the symptoms and disease itself? Worry about recovery rates, relapses, statistics and cures? But it really resonated with me that my worry (or my husband’s worry) could become my child’s worry. Above all, I would hate to dampen any of Kendrie’s happiness with life, (or happiness with her spiky hair!) because I was too busy pondering the “what if’s” to simply enjoy the moment.

So, it is decided. My New Years Resolution #2, right under “Skip More” is going to be “Worry Less”. Or maybe it would be more correct to say, “Worry Appropriately”. Much like the adage “Don’t work hard, work smart” I think I’ll be more aware of my worrying and what good, or what lack of good, it is actually doing me. And try to convince my husband to enjoy himself a little more in the New Year as well. (Let’s be honest …. He’s a much bigger worrier than me!)

Hope your week gets off to a good start,

Kristie
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KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:
Um, today was actually a pretty good day. Yeah for me!


BEST PART ABOUT HAVING CANCER TODAY:
When my mom took me and Brayden and Kellen to the movie and at the beginning they had a commercial for some hospital place and can you believe every kid in that commercial had cancer? I saw kids with no hair, kids with ports, kids with iv poles ..... when it was over I looked at my mom and whispered, "just like me"

"PUT ME IN, COACH …. I’M READY TO PLAY!"

Week #12 of Long-Term Maintenance Therapy

When Kendrie was three years old, she was obsessed with baseball. Ob. Sessed. She carried around a ball and glove at all times and would practice “catch” with anyone she could trick into standing still for more than two minutes. And she had a rotating supply of baseball movies that were watched on a very regular basis: Angels in the Outfield, The Sandlot, and Rookie of the Year.

Then, when Kendrie turned four, she was diagnosed with leukemia. Before long, ball caps came to signify something not quite as fun as a baseball obsession. And spending all her time at home with mom, or in the van driving back and forth to Atlanta with the portable DVD player, meant those three baseball movies were watched even more. She still asks on a regular basis “How much longer until it’s my turn to play t-ball?”

So on Tuesday of this week, as we left for Atlanta at 6am, the DVD player behind me was playing “The Sandlot” for the 7,824th time. It’s really a cute movie, if you haven’t ever seen it …. and I have every single solitary line memorized at this point. So, I was able to tune it out a little while I was driving and reflect on Kendrie’s obsession with the sport and how, in a few small ways, baseball is like childhood cancer. (Yeah, you saw that one coming a mile away, didn’t you?)

WAYS THAT BASEBALL IS LIKE CHILDHOOD CANCER:

1. There are nine very important members of the team: Kendrie, her parents, her siblings, her oncologist, her nurse, her nurse practitioner, her pharmacist, her child-life specialist, and the guy who makes the breadsticks at Pizza Hut.

2. The support we receive from thousands and thousands (ok, well, maybe it’s only hundreds and hundreds) of people who fill our stadium -- extended family, close-up friends, long-distance friends, and online friends -- cheers us on in an unbelievable way.

3. Some things, like a bald 4-yr old, grown men spitting, and paying $8 bucks for a beer, are just inexplicable and wrong.

4. The treatment for leukemia is like Roseanne Barr’s crotch-grabbing rendition of the Star Spangled Banner --- it was completely obnoxious and went on for way too long, but you just grit your teeth and get through it.

5. Living a life with childhood cancer is a little like playing on a prison baseball team --- the circumstances suck, but at the end of the day, you’re happy to still be out on the field.

6. Some days are pure bliss --- sunshine-on-your-face-eating-a-foot-long-and-peanuts-and-cheering-and-waving-a-big-foam-finger kind of happiness. Other days, like the days we had this past week when we lost three amazing kids: Shelby Prescott, Cheyenne Fiveash, and Connor Hunley .... you just feel like huddling in the dugout, hiding under your umbrella until the rain stops and the sun comes out again. I mean, it *has* to come out again, doesn’t it? Even for their heartbroken families?

7. Finally, you take advantage of friendships with team-mates you never expected to have. For us this past week, that meant meeting for the first time in clinic, Camp Jack, a cutie who is beating neuroblastoma. Jack has had two stem cell transplants and we’ve been following him online, so meeting him in person, completely by coincidence, was fun. Of course, his teen-age girlfriend Cali Ali is probably going to be a little jealous of the time we got to spend with him. She and Jack have a special relationship --- not in an icky, Mary Kay Letourneau kind of way, but a really fun bi-coastal friendship.

After our clinic appointment on Tuesday, we headed next door to the AFLAC Cancer Center at Scottish Rite hospital to stop in, say hi and deliver cookies to Mary Grace and her mom D.D. Mary Grace is undergoing additional chemo for a germ cell tumor on her spine that her doctors are deciding how to treat this week. Chemo; radiation; surgery; there are many options and we are praying for wisdom for her oncologists as they decide which one(s) will give Mary Grace the best opportunity for a complete cure.

And finally, two remaining team-mates we met that evening as we attended the first-ever Camp Sunshine support group meeting for cancer families in the middle-Georgia area. We got to spend more time with Jacob and his family, which was great, and also to meet for the first time another online friend, Jay and his family. We’re very hopeful this meeting was the beginning of long and helpful friendships.

My final baseball analogy involves two of our friends from Illinois who drove down to Georgia to walk with us in The Light the Night Walk last month; 14-yr old Evan and his dad, Gary. Even and Gary are both sports buffs, especially baseball, and a few years back had gone to a game in Cincinnati (I think --- we’ve been stationed at so many military bases with them, maybe I’m mixing up my cities!) Anyway, the two of them had gone to a professional baseball game and had pretty good seats. Good enough that Evan got SMACKED right in the chest by a foul ball. Not to be overly dramatic, but a foul ball hitting you in the heart at 100 mph .. well, that can kill you. It **has** killed people before. So no surprise that they brought in paramedics and stadium representatives, and made Gary sign a release of liability waiver before he was allowed to remove Evan from the stadium. (Gotta love America!)

Luckily, Evan suffered no permanent damage. And I know he still likes baseball. But I wonder if he enjoys the games as much anymore. Is he as relaxed, as happy, rooting for his team and waving his pennant around and wondering nothing more serious than why on earth his shoes are sticking to the floor of the stadium? Or is he a little bit watchful, slightly apprehensive about the next foul ball and where it might be headed and what damage it might cause?

That’s how I feel with Kendrie. Don’t get me wrong --- I’m thrilled to be at the game. But I can’t keep that constant, constant worry out of the back of my head at all times. I guess that's what makes it "constant", right?

Please let the foul balls go straight up in the air and not smack any of us in the chest again.

Take care, and have a great weekend,
Kristie

Ps. For a really great journal entry, that most likely represents how a lot of parents of kids with leukemia feel, check out the Nov 1st journal entry at Katarina's site. At least I know her mom hit the nail on the head for how *I* feel some days.
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

I’m still not quite over the worst part of having cancer on Tuesday. Let’s see, would it be the part where the nurse held me still and jabbed a needle in my chest? Or held me still and jabbed a needle in my spine? Or the five hours in the van? Or maybe, yes, I know, I know, it’s the stinkin’ steroids that are turning me into a raving, crabby, starving, crying lunatic!!!!! (Wait, that last sentence was high-jacked by my Mom!)

BEST PART ABOUT HAVING CANCER TODAY:

Only six more months until my mom signs me up for t-ball! (Hey, I heard somebody around here talking about it!)