LITTLE-KNOWN SIDE EFFECTS FROM CHEMO

Week #7, LTM

Well, I had high hopes that we would be able to coast through chemotherapy with only a minimal amount of side effects. I mean, most, if not all kids being treated for leukemia, at one time or another suffer from the usual, run-of-the-mill complications from the chemo: low counts, nausea, fatigue, hair loss, aches, pains, etc. I’d be amazed to find ANY kid who never had so much as one bad day while being treated. And of course, some kids have even worse side effects, requiring hospitalizations, surgeries, additional meds to treat the illness from the original meds …. Really, it can be quite depressing at times to realize that while the cure will “cure” you, it can also make you mighty sick in the meantime. Of course the end justifies the means, that goes without saying (but I said it anyway, because everyone who reads this site knows by now that I just can’t shut up most of the time) but it’s still hard to see these children suffer additionally, on top of the treatment itself.

But it appears a side effect so sinister, so dastardly, has recently emerged on the radar screen for Kendrie that it makes all the other complications fade in the background. Before long I will be wringing my hands and shaking my fists at the Heavens (well, when I get them out of the Cheetos bag) in anger at the entity that struck Kendrie with the most awful, most feared, Grand-Daddy of all chemo complications: the dreaded TPC. Yes, that’s right (shaking my head in sorrow) Tongus Protrudus Concentrationus. Or, in laymens’ terms, “I can’t do anything unless my tongue is sticking out of my mouth in just the right position.”

GASP!!! I know, join me in cursing this reprehensible trait, and bemoaning the ill fortune that allowed it to fall on my daughter. Leukemia wasn't enough? Now she has to be afflicted with TPC??? Life can be so unfair sometimes. You think I am exaggerating? Just take a look at the following photos, taken today by a research photographer, interested in tracking this unfortunate phenomenon:



Scene 1: Kendrie is playing soccer in the front yard, enjoying herself, and able to keep all oral appendages in place.



Scene 2: Oh wait, what is that we see? Is it the beginnings of TPC??? Please tell me it isn't so!



Scene 3: Yes, yes, without a doubt, the horrible malady has stricken my poor child. Does she even have a chance to overcome this monster?



Scene 4: I fear she will never be able to shake free from it’s grasp!!! It’s too terrible to watch. I can’t bear it, and must look away.



Scene 5: Oh, no, wait a moment. …. What’s this we see? Is Kendrie fighting back, trying to reclaim control and battle the beast that is TPC???? Is there hope???



Scene 6: No, without a doubt, the battle is over. We have been defeated. TPC has taken ahold of my darling daughter and I fear it will be a lifetime affliction.



Scene 7: Well, at least she’s too cute to really care about it.


And how do I know TPC is a lifetime affliction???? Well how do you think? Because I am a sufferer myself! In fact, the guilt could possibly overwhelm me, knowing I have passed this undesirable trait on to my daughter (ok, I admit it, my son too. Kellen looks like an anteater when he’s doing his school work. Brayden is the only one to escape unscathed.) I still remember quitting Girl Scouts at the age of seven because my Brownie troop leader made fun of me in front of the all the other girls for sticking out my tongue when I concentrated. You know, thirty years ago. Not that I remember. Not that she shattered the self-confidence of the very child she was supposed to be leading in a positive, nurturing way. Not that I’m bitter or anything.

Hey, wait a second ---- you know what I just remembered? MY DAD DOES THE SAME THING!!! Praise Heavens, now I don’t have to take the blame for this ---- we can just say it’s Grandpa’s fault!!! Whew!! I feel so much better now!

Hope you all have a great weekend. We are headed to Camp Sunshine Family Camp and couldn’t be more excited. They have arts & crafts, fishing, boating, games, hiking, tennis, archery, parent discussions, and best of all, an oncologist there to answer all our questions. Obviously, I will be asking lots of questions about TPC and if there's any help for Kendrie!



Take care, (and thanks to all of you who take the time to sign the guestbook --- I haven’t mentioned it in a while, but we still get a huge kick out of reading the messages!)
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: A couple of kids in my class went home with strep throat and my mom is getting freaky with the Purrell again.

BEST PART ABOUT HAVING CANCER TODAY: Hey! I just found out that we are going back to Family Camp this weekend, wahooooo! How many more days until this weekend?!? And you know what else??? I LOVE This song! It doesn’t have anything to do with leukemia, but you should hear me sing to it!

YOU MEAN THE HAPPIEST PLACE ON EARTH IS NOT BURGER KING?

Week #7 of LTM

Judging by some of the questions/comments in the guestbook the past week, and a few personal e-mails I have received, I guess I need to clarify a few items from the past journal entry, where I discussed my lost youth and impending mid-life crisis:

a). Yes, I really am that old.

b). No, I have not seriously considered using a photo-retouching program on pictures of myself, although I’m sure the benefits would be many. Thanks for the suggestion.

c). Yes, I also went through the three stages of 1980’s hair: poodle perm, big hair, and hair so big we had trouble fitting through doorways.

d). Leo, you goofball (a term of endearment here in the US) of COURSE my kids have another change of clothes besides the same shirts you continually see in their photos. In fact, they each have two or three changes of clothing! But when you become a parent you will discover that when taking three kids to a public outing such as the zoo, amusement park, blue-light sale at K-mart, or anyplace large crowds might gather, it’s best to dress them ALIKE, preferably in neon clothing, so you can find them quickly and easily in case one of them wanders off to the fast-food counter or the toy section or the gift shop, despite your having told them a bazillion times to stay close to you, and never leave your eyesight, but do they ever listen??? No! They just wander off, lost in their own little world, not caring that you will be worried sick when you can’t find them, looking at this and that, and not paying any attention whatsoever to ………oh sorry, got a little distracted there. Where was I? Oh yeah, the song on the site …..

e). No, I didn’t realize the song “1985” by Bowling for Soup has been on the radio for quite some time. I’ve been listening to Disney soundtracks for so long that I wouldn’t recognize Casey Kasem or a Top 40 hit if it fell out of the sky and hit me in the head.

f). Yes, the rest of the “A Hangover You Don’t Deserve” cd is equally enjoyable, in a frenetic, beer-swigging, frat party kind of way. I think it might be the first CD I have ever purchased with a “Parental Warning: Explicit Language” notice. That’s ok, I’ve been known to pollute the spoken word on occasion myself, but the rest of you should be warned. My second-best new favorite song on the cd is the hysterical “Ohio Come Back To Texas”, which, despite the fact this site is *supposed* to be about Kendrie and her battle with cancer, and *not* my own personal music forum, I will be happy to put on the site if enough people ask for it in the guestbook.

So, speaking of music, what’s with the Disney song on the site now, you ask? Well, let me tell you. It’s a nod to our upcoming (well, upcoming six months from now, but it’s always good to plan ahead) visit to Disney World and Give Kids The World courtesy of the Make-A-Wish organization. To be honest, I’ve been very conflicted about the whole “MAW” concept, and asking for a wish for Kendrie. Everyone knows that MAW is only for really, really sick kids, right?

I remember when Kendrie was in the hospital at the time of her leukemia diagnosis. The initial doctor who diagnosed her did not tell us that leukemia was (for the most part, and for the fortunate majority) treatable, and we hadn’t heard that news yet from the new oncologist. We had no idea what had hit us, what was going to happen, and couldn’t even think of any intelligent questions to ask (those of you who know us will not be surprised by that!)

The social worker came in the hospital to discuss with Blaine and me some of the support organizations available, insurance/financial help, resources, books, support groups, etc, and we were so overwhelmed by everything. We hadn’t even dealt, emotionally, with the fact Kendrie had cancer yet, and were sitting there with HUGE “deer in the headlights” looks on our faces, I am sure. Towards the end of the discussion she said, “And don’t forget, Kendrie will be eligible for a wish with Make-A-Wish now” and all I could think was that was for kids who were dying ---- I sat there and burst into tears. It was probably one of the lowest points since the moment of diagnosis for me, since it was a concrete acknowledgement of just how sick she was.

Fast forward eleven months: Kendrie is doing so darn well with her treatments that it seems embarrassing, almost like cheating a little, to request anything from a wish organization. I mean, we didn’t do anything to *deserve* a wish, and we certainly don’t *need* a wish ….. aren’t there other kids more entitled? More medically needy? Would we be taking a wish away from someone else who might benefit more? Why do we feel at liberty to request a wish, when Kendrie is doing so great???

And then my fellow online leukemia parents reminded me of a few things: For the past eleven months, there is a good chunk of Kendrie’s everyday life that has just stunk, through no fault of anyone’s. Yes, she’s doing well, but don’t I remember how awful those first eight weeks were (Induction and Consolidation Hell, aka “The Big Eat and Scream”, as Julianna Banana's dad calls it?) Spinal taps, bone marrow aspirations, surgery, IV’s, blood draws, chest pokes, leg pokes, hair loss, nausea, vomiting, aches, pains, and more chemotherapy and medication than most of us will take in our lifetime …. All before age five???? Brayden and Kellen have sacrificed normalcy, and we’ve definitely endured (and still endure) the constant worry about the “r” word …….. So you know what ? If there is an organization out there willing to take kids with a life-threatening illness, and treat them like royalty for a day or a week or whatever, then you bet that as a parent, I want that for my daughter and her siblings. So, soapbox aside, DISNEY, HERE WE COME!!!!

The MAW office that handles our area sent three wish-granters to our house on Wednesday night to talk with Kendrie and find out what she would like to wish for. As parents, we are not supposed to “lead” her in any way ….. Blaine was hoping they wouldn’t be suspicious when Kendrie wished for a 32 foot bass boat with 75 hp motor, rollaway duck blinds, and camouflage-trailer.

So, hoping she would be prepared for the visit, and knowing we didn't need a new bass boat, I just mentioned *casually* to her, “Kendrie, if you could make a wish for something, what would it be?”

After giving it great thought, she replied, “I don’t know”

I tried a different tactic, “Well, if you could go anywhere or do anything for fun, where would you go?”

More serious contemplation, and then, her answer, “Burger King”

Me, “Burger King? That’s where you’d want to go? Out of all the places in the world, you would want to go to Burger King?”

Kendrie, “Yes. I like it there.”

So I’m thinking “Great, we’re going to Burger King in a limo at this rate!” So again, with a different tactic:

Mom, “Kendrie, if you could have anything on earth, what would you wish for?”

Kendrie: “That Fosters (our first dog) would come back down from Heaven.”

Mom, “ummmmmmm, welllllllll, what about another wish?”

Kendrie: “That Lager (our current dog) would never die.”

I don’t know what it is with the dead-animal fixation, but obviously we needed help. I finally broke down and told her what was going on, and gently steered her in the direction of Disney World, which luckily, she is thrilled about. We actually had a trip planned for last October, but had to cancel at the last minute when she was diagnosed. So during the course of the visit we talked over some of her favorite things with the wish granters (who I’m sure thought my kids were so ill-behaved that we should be taking them to Obedience School instead!) and everyone agreed that Disney and GKTW is the wish for us. I know all the kids will enjoy it and it will be a great celebration of how well Kendrie is doing in her fight against leukemia. We requested late Feb/early March time frame, so if any other families out there will be going around the same time, let us know!

In the meantime, I think I can treat them to a visit to Burger King, the SECOND Happiest Place on Earth, all by myself.

Hope you all have a great weekend!
Love, Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Mom and me went on a Pre-K Field Trip today to a local park and it was hot and tiring playing on all that playground equipment and I drank all my juice at lunch and I was SO thirsty and hot and tired and thirsty and my MEAN MOM wouldn’t even let me get a drink out of the water faucet coming out of the ground like all the other kids! She kept mumbling about germs and I was just going to have to wait until I got back to school and could get a drink out of the Dixie cups she gave my teacher --- just what is wrong with drinking out of a water faucet anyways????

BEST PART ABOUT HAVING CANCER TODAY: People keep rubbing my head and telling me how cute my hair is coming in. It’s ok, I guess, for them to rub my head. It’s not like I’m a statue that’s going to bring them luck or anything, though. Hey! Did you hear that I’m going to Disneyworld????!!

"Let's Do.... the Time Warp .... Again!"

Week #6 of LTM

You know, if I could go another round on my “TIME” tangent from the other day, I want to mention a song that I just heard for the first time. It’s by a new (?? Who knows? I am so out of the loop of current music, these guys could have won a Grammy last year and I wouldn’t even know) group called Bowling for Soup and the song is called “1985”. The lyrics, in a nutshell, are along these lines:

“She likes Bruce Springsteen, Madonna,
Way Before Nirvana
There was U2, and Blondie,
When there was *music* on MTV

And now her two kids in high school
Tell her she is uncool

She is still preoccupied,
With 1985.

When did Motley Crue become Classic Rock?

When did Ozzie become an actor?

Who's that other guy singing for Van Halen? Etc, Etc”

I’m telling you, I about wet my pants when I heard it for the first time. Then I got frightened because I knew that song was written about ME!!! I like it so much I’m going to go buy the CD tomorrow so I can put it on this site. (Don’t even get me started with the Kaaza and Kaaza-Lite …. *that’s* how stuck in 1985 I am --- I still PAY for my music!!! Ipod? Mp3 player?? Shoot, I consider it a technological success when I get reception on my cell phone.)

So, since I’m being blunt and sharing with you guys, warts and all (you do know that’s just a figure of speech, right? I mean, I don't actually *have* warts) I thought I’d repeat an e-mail here that I posted to my ALL-Kids Support Group list earlier tonight.

As a bit of history, one of the members, Kim, mom to Andrew, found out that a fabulous photo taken of her husband Doug, crossing the finish line of the Team in Training 100 mile (around Lake Tahoe!) Bike Ride with Andrew in his arms, was being published in Shape magazine. Quite frankly, I think the photo is so wonderful that it should have been on the cover of Sports Illustrated. But I digress.

Kim heard it was going to be in Shape magazine and, since I am forced to live vicariously through other people, I really wanted a copy of the magazine. Here’s the story that unfolded; just thought I would share with the rest of you the e-mail I sent to Kim:

“I was in the grocery store, waiting in line to check out, and I looked over and noticed the current issue of "Shape" magazine. Thinking to myself that Doug and Andrew might be in it, I picked up a copy to buy. So I'm standing in line, with my Shape magazine perched carefully in my cart, in between the box of Ring Dings and the Cheetos, balanced precariously on my Otis Spunkmeyer Chocolate-Chocolate Chip Muffins, wondering who on earth actually *buys* Shape magazine each month? Then I figure well, if I've paid for it, I might as well read the thing, even though it *appears* to deal primarily with the topics of diet and exercise, two subjects that do not interest me in the least.

So, the past few days I have been flipping through the articles and ads, looking for Doug and Andrew, and do you know what I've found out?

I have bad hair, bad skin, no willpower, a big butt, flabby thighs, poor posture, and terrible taste in music, clothes and makeup. I eat too much, exercise too little, and don't appear to have much self-control. My diet is a disaster, my personal life is in chaos, and I need to take charge, obtain control, and find order, peace and inner happiness. Unbeknownst to me, I am a big, fat walking disaster and I didn't even realize it.

Oh, and I still don't have a photo of Doug and Andrew. It wasn't even there.”

So it appears that I’m mighty lucky Kendrie is in long-term maintenance and doing so well, since according to Shape magazine, it’s time for my mid-life crisis!!!

Hope you are all having a good weekend, and reading magazines that don’t give you total complexes about yourselves! And hey, if you get too depressed, do what I plan on doing --- put on your Flashdance sweatshirt, crank up the AFOS tunes (and if you don't know who AFOS is ... then you're probably not old enough to hang out with me!) and moonwalk your troubles away! 1985, here we come!

Love,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Well, it really wasn’t too bad, but when we went to the park today I started having flashbacks when my mom was yelling at me to put on a hat. I guess I don’t have as much duck fuzz as I thought and she was worried my little head would get sunburned.

BEST PART ABOUT HAVING CANCER TODAY: Those checks for the Light the Night fundraiser are still coming in -- we got two more in the mail today! Thanks so much to everyone for helping us surpass our $1000 goal. If you are an online friend and you’d like to help, there’s still time! Just go to Team Kendrie and Madie to make an online donation to the Leukemia and Lymphoma Society. Thanks!

IS TIME SPEEDING UP, OR SLOWING DOWN?

(Or, is my sense of perception just changing drastically…..)


ONE YEAR AGO TODAY: I do not know what is wrong with this whiny child of mine but she is about on my last nerve. “Mom, my legs hurt …. Mom, carry me … Mom, my legs fell asleep” Good heavens, could the kid be any lazier??? I keep telling her that she has to walk … she’s four now, after all, and she will just stand there and fuss until I give in and pick her up and carry her. Good gracious, is she the biggest baby on the planet or what?


CURRENT: You remember when you were in college and you thought how much easier life would be once you were out of school and employed? Only once you got there, you realized how much easier life actually was in college? And how once you had a baby, you wondered what you ever did with all that free time before you had a baby? And then once you had a second and third baby, you looked at all the parents with only one measly baby and thought, “You guys just don’t know how easy you’ve got it!”

Blaine and I were having this exact (sort of) conversation this morning, when I mentioned to him that we are going to be out of town three of the next five Sundays. He, being a “yes, dear” sort of guy, couldn’t remember a single thing we had planned and I had to remind him: Camp Sunshine Day at Wild Adventures Theme Park; Camp Sunshine Family Camp Weekend; and the Light the Night Weekend in Atlanta. And the thought that suddenly ran through our heads was ….. “What the heck did we ever do with all our free time before Kendrie got cancer?”

We’ve only been in long-term maintenance one month, and already I don’t remember a time when we weren’t giving dozens of medications each week, on a demented “this one at night with no food and this one at night with food and this one at bedtime but half of the dose in the morning on Sundays only and this one after supper but before snack” kind of schedule. I counted for the first month: 87 doses of meds. Thank goodness several of them are pills we can give together. Throw in the Zyrtec and ointment Brayden is on for eczema and the amoxicillin Kellen is taking twice a day for his ear infection, and I swear to high heaven I could just have FLORENCE FREAKING NIGHTINGALE tattoo’d on my forehead.

Some days I look at Kendrie and think “I can’t believe we’ve been doing this for almost a year already” and other times I think, “I can’t believe we still have fifteen months to go!” Time is flying --- time is dragging. And I’m pretty sure that when it’s all over, we will sit back and think, “I can’t believe we thought we were busy when Kendrie was on chemo --- we didn’t know how easy we had it!”

But it’s certainly not all bad! Although I don’t miss our weekly trips to Atlanta, I have to say that I look forward to the monthly visits for a social reason --- it’s our chance each month to hook up with our chemo-buddy Catie and her mom Jenny, when Catie has her monthly chemo on the same day. This month Catie went inpatient a day early, so we had lunch with them in her hospital room. She is so cute and Kendrie just adores her! But it was also our chance to meet Mary Grace’s mom D.D., (who actually treated for lunch, and it was NOT purchased at the hospital cafeteria, let me tell you! She goes to what must be the neatest deli in Atlanta and Kendrie is still talking about her chocolate-covered cherry/Hershey kiss mouse with the walnut ears!) Mary Grace was diagnosed with a germ cell tumor only a month ago and I’m so impressed with D.D. for already being so proactive about meeting other moms and getting as much support as possible. As far as I’m concerned, getting together socially with these wonderful moms and kids will be the highlight of our Atlanta trip each month. (Kristin, next month we’ll have to arrange better with your schedule! And Regina and Tiffany, how far are you from the clinic??? You up for lunch some time?)

Oh, well, yeah, in case I forget, there’s also the whole “chemo” reason for going. Kendrie’s counts were fine, although her oncologist warned us that usually in the second or third month of long-term maintenance the counts will start to bounce all over the place as the body adjusts to the medications. Something highly technical about red blood cells living 90 days, so it takes that long to accumulate, blah blah. We’ve just been forewarned not to panic if it happens. But for now, Kendrie is still doing great. (whew!) She received her vincristine through her port and except for a few moments when it wouldn't flush and they thought they might have to re-stick her, things went fine. Luckily, Kendrie's favorite nurse Mary came to the rescue. Dr. B tickled her foot (Kendrie's, not Mary's) and I think the wiggling allowed Mary to get the heparin through, thank goodness!

So, back to the support part of the equation. After the great lunch we had, I had a meeting with a staff member at Camp Sunshine, the wonderful support group that meets in Atlanta. You know they are wonderful,and brilliant, and helpful, because look at the stunning family that was on the cover of this quarter’s Camp Sunshine newsletter:




I mean, really, how could they go wrong? (wink, wink)

But seriously, I am working with Camp Sunshine to get a support group started for parents of kids with cancer here in the middle Georgia area. As wonderful as their programs are, and the awesome facility and staff they have there, Atlanta is simply too far of a drive for most of us to zip up there after work in the evening. So it’s in the very initial, beginning, baby-step phase right now, but hopefully we’ll be able to pull it together, get the facilitators hired, and get our first meeting lined up in the next two or so months. I’m very excited about the prospect of meeting with other parents on a regular basis, and hope it’s well-received. If anyone reading this is located in the middle-Georgia area and would be interested in more information, or knows someone who might like more information, please e-mail me privately and I’ll be happy to let you know what’s in store.

Just thought I should mention that since starting steroids last week, Kendrie, along with Ivan, has been upgraded to a Level 5 Hurricane. She’s not eating us out of house and home yet, but we had an ugly episode today when Brayden was commandeering the television, watching The Saddle Club, and wouldn’t offer up the remote for change. I always forget how Sybill-ish Kendrie can become on steroids and it takes me by surprise when it happens; when my normally fun-loving, pleasant child turns into Charles Manson. Sooooo happy it’s only five days worth of steroids!

Speaking of storms, on a more serious note, I knew my perspective had changed when I started reading the front story of today’s local paper about the DEVASTATING local effects of Hurricane Frances. Apparently, a large number of pecan crops have been ruined and we’ll be paying something like $300 a bag at the grocery store for pecans this winter. Whatever. THAT is not devastating! That is annoying, that is too bad, that is “maybe you should make fudge with walnuts instead of pecans at Christmas” kind of stuff. It is not devastating. Devastated is how the parents of Carter Martin must feel right now, watching their beautiful, wondrous son pass away this afternoon at home after losing his battle with Ewing’s sarcoma. Devastated is how the parents of Thomas Peterpaul must feel, losing their son yesterday to leukemia. I never knew Thomas; I only met Carter and his family once. But I feel such a huge loss for their families, all the same.

I wish I had something profound to say about time … and how I’m sure they would give anything to have some of it back with their sons. But I don’t.

Peace be with you both, Carter and Thomas.

Kristie

“HURRICANE FRANCES!! IT’S TERRIFYING! IT’S OVERWHELMING! OH, NO, WAIT, It’s just leukemia.”

The comparisons between natural disasters and the world of childhood cancer.

Week #4, LTM

The only thing worse than the rain and bad weather from Hurricane Frances canceling the Atlanta Braves baseball game that we were supposed to attend yesterday with friends, watching the ceremony for the MLB fundraising initiative for CureSearch National Childhood Cancer Foundation……… would be the fact that we assumed the rain and bad weather would cancel the game, so we decided not to make the drive, and of course it wound up not raining a single solitary drop. What’s that phrase about hindsight being 20/20? Instead, Blaine watched the game on tv and we’re kicking ourselves for missing what promised to be a special and fun day with friends.

Not that Hurricane Frances didn’t have ANY impact on our lives. We had lots of rain, one tree down in the backyard, twelve hours with no power, two days (so far) of cancelled school --- and we are hundreds of miles away from the shore. I hope everyone farther south fared ok.

I was actually thinking about the bru-ha-ha caused by Frances, and the differences and similarities between a natural disaster and a life with childhood cancer. Nothing profound, but a few random thoughts:

** Unlike a hurricane or tornado, there is no Cancer Doppler Radar System. You have no advance notice or warning, no way to prepare. No time to board up your windows, throw your possessions in the car and flee the area. You’re just sitting there innocently, minding your own business, and *BAM*, Mother Nature throws a terrifying disaster into your life. Sort of like living through a tornado, only without the adrenaline rush, or the possibility of really cool photo opportunities.

In fact, if there were any natural disaster on par with a diagnosis of leukemia, I think it might be an earthquake. When suddenly, the solid ground beneath your feet is shaking and pitching and rolling, nothing is stable anymore, and in the shock of the moment, you feel like the earth is opening up directly underneath. (for the record, I’ve never actually BEEN in an earthquake, but I assume that is what it would be like!)

** In preparation for a hurricane, residents stock up on batteries, duct tape and bottled water. In preparation for Steroid-Week, cancer-parents stock up on macaroni & cheese, pizza and breadsticks. But believe me, the prospect of a child on steroids is much, MUCH more frightening than the prospect of a hurricane. Both are whirling dervishes that wreak havoc … but the steroid child has an attitude to go along with the destruction. Be afraid parents, be very afraid.

** The span of therapy for your child is similar to the time a hurricane spends working its way to shore. You know the storm will pick a path …. but there is nothing you can do but wait and see which way it will go. Will your child be directly in the path of the worst of the side effects, or will the storm of chemotherapy veer off just enough to spare your child the brunt of the storm? You sort of sit back and hold your breath and hope when the storm passes, the parts of your life you care about the most are still standing.

** Your friends and family will become your own personal FEMA team. Online friends and total strangers will become your very own Red Cross, lending moral support and encouragement when you need it. For me, my ALL-Kids support group and Caringbridge friends are my natural disaster response team and they (YOU!) have helped me more than I would have thought possible.

** When the storm passes, and you are considering the toll it took on your family and child ---- looking at the damage it has done and the innocence that has been lost, you sit back and think how lucky you are that it wasn’t worse. Because you know it could always be worse. And you are grateful that the sun will shine again. And most of all, you pray for no more storms.

Here are a few funny comments made by my kids regarding the storm this week, just to show you the kind of perspective they have about life:

Brayden, upon learning school was canceled today and since we had no power, we also had no tv or computer: “This is absolutely the worst day of my life.” My reply? “Then you’ve had a pretty good life so far, I’d have to say.”

Kellen, when I told him that school was canceled again tomorrow: “Oh great. Now I’m going to be stupid.”

Kendrie, getting a glimpse of my stomach today and pointing to my stretch marks: “Look mom, baby skid-marks” (ok, that has nothing to do with the hurricane but it made me laugh).

I hope all you Florida residents are doing ok. Check in and let us know; we are worried about you.

Many, many thanks to all of you who took the time to sign the guestbook for Kendrie’s birthday. It was really cute that morning when she woke up, she rushed to the bathroom and stood looking in the mirror. I thought maybe she had just noticed the duck fuzz on her head and asked her what she was looking at. She replied, “I’m five …. And I’m pretty sure that I’m taller!”

Hope you all enjoyed your Labor Day, and have a great week.

Love, Kristie .....ps, several of you asked in the guestbook what Brayden and Kellen bought Kendrie {with my money, I might add} for her birthday. I was actually quite proud of them for giving some thought to what SHE might like to have …. Brayden bought a Batman toy and Kellen bought a plastic bowling set. Not too bad for six and seven years old, do you think?
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Well, what really stinks is that there was no school yesterday (something about my dad and all the other workers deserving a stupid vacation day --- whatever that is about) and then there was no school today or tomorrow because of the stupid storm, and then on Thursday I have to spend the day in Atlanta getting my stupid chemo …. So I will only get to go to school one measly day this week! How am I supposed to further my education at this rate?????

BEST PART ABOUT HAVING CANCER TODAY: So many of you who are kind enough to send in donations for our Light the Night walk. My mom says to tell you that you can still donate online at Team Kendrie and Madie. I’m not really sure what all this means, but my mom sure looks happy when she opens the mail and gets a donation, and Lord knows if she’s happier, then me and my brother and sister are happier, too! So, thanks!

"LET’S GET THIS PARTY STARTED --- I’M FIVE, ALREADY!"

Week #4 of LTM

One year ago today: I’m so glad that Kendrie got over the flu bug or whatever it was that was making her so whiny and achy. She’s really perked up now …. do you think the party scheduled for her upcoming 4th birthday has anything to do with it????




Current -- Hey, everyone, we’ve got us a BIRTHDAY GIRL in the house!!! Can you believe Kendrie will be five years old tomorrow? (or today, at the rate I am going with this journal entry.) I haven’t seen a kid as excited to go to bed “so tomorrow will come” since, oh, I don’t know …. Last December 24th, perhaps?



We decided to have our family celebration this evening since Brayden and Kellen have soccer practice tomorrow night. (darn soccer practice, interferes with everything!) In our family, the tradition is that every other year you get a “Friend Birthday”, usually held at an over-priced pizza-parlor-video-arcade-soft-play-area-kind-of-place, where just in case the kids don’t run wild enough, I throw goody bags filled with sugar and cheap toys at them as they walk out the door. Every *other* year, as this year was for Kendrie, is the “Family Birthday”; much more low key. The birthday boy or girl gets to pick a restaurant, we go out to eat as a family, then come home for gifts, cake and ice cream. Perhaps not as exciting as an evening spent with a rat whose name rhymes with Chuck E. Cheese, but much better as far as I’m concerned!

So this year Kendrie chose the steak-restaurant Logans as her pick. Don’t ask me why, she’s never been to a Logans in her life. I think she overhead Blaine and me talking about the fact you are allowed to throw peanut shells on the floor and she figured that was as close to sanctioned messiness as she was going to get.

Before dinner, I had to take Brayden and Kellen to buy her gifts. Family tradition #2, the kids have to use some of their own money to buy birthday gifts for siblings and friends. (Actually, this is a new tradition since we just started giving them allowances a few weeks ago. We’ll see how it goes.) First I had to wait for Blaine to come home from work so he could stay at home with Kendrie while I took the older two to the toy store. As we’re backing down the driveway, Kendrie is running along side the van yelling “NO Barbies, NO Barbies!” Doesn’t she understand the concept of being a gracious recipient?

Anyway, Kellen had $2.00 to spend and Brayden had $2.51. (I have no idea where she got the fifty-one cents!) All the way there they were arguing over who would get more money back from the cashier, to put back in their allowance drawers. I refrained from explaining to them that unless they were each buying Kendrie a pack of Juicyfruit gum, there probably wouldn’t be any change, and I might even have to chip in. In fact, the gifts FROM Brayden and Kellen, TO Kendrie, wound up costing mom $25.42. Whatever. Maybe after we’ve been doing the allowance-thing a little longer they’ll be able to pony up for a bigger share of the gifts. That’s the theory, anyway.

Then the whole family headed to Logans, where we proceeded to dump a small mountain of peanut shells on the floor, as required, and Kendrie told anyone who walked within a 20-foot radius of our table, wait staff and fellow patrons alike, that we were celebrating her birthday. Then, the instant the waiters came over to sing Happy Birthday to her, she freaked out, clinging to me, crying, and attempting to become the first child in history to actually become ONE, physically, with her mother by latching on to my neck. What a drama queen.

Then it was home for presents ………….. and I have to tell Briana R. how much she enjoyed your package --- thank you so much for thinking of her! I’m not even sure how you knew it was her birthday???? What’s funny, is how she is such a tomboy, and doesn’t like to play with Barbies or dolls or anything, and the first thing she did with your package was insist that I paint her fingernails. Believe me when I say that has NEVER happened before!

And the last birthday tradition is that the birthday boy or girl gets to help make their own birthday cake. (yeah, yeah, I know, cheap labor!) So here are some photos of Kendrie getting her groove on in the kitchen.



"OK, boys and girls, the key here is to insist on working the hand mixer all by yourself, then just to make your mom crazy, wave it around a few times, splattering cake batter all over the kitchen."



"Now, declare it is your sovereign right as the birthday girl to lick the cake batter out of the bowl with a big spoon all by yourself. Give the cast-off, measly beaters to your brother and sister."




"Oh, the heck with it. Just dive on in. But make sure you wipe the cake batter off the top of your head afterwards!"


Tomorrow, her actual birthday, I am taking snacks to her pre-kindergarten class. Although I have tried to prepare thoroughly by buying chocolate chip, peanut butter, AND sugar cookies, I have no doubt that Kendrie will have the only 4-yr old wheat-allergic, sugar-avoiding vegan in the entire school in her class who will hate what I brought. That’s ok, more cookies for me.

If you would take a minute to leave Kendrie a note, wishing her a happy birthday in the guestbook, I would really appreciate it. Naturally, I’m saving the guestbook for her to have as a keepsake. Although we’ve been in treatment almost eleven months, this is the first birthday since diagnosis. God willing, there will only be one more birthday while on treatment. And I hope when her seventh birthday rolls around, leukemia and chemotherapy are but a blip in our rear-view mirrors.

I know birthdays are always a little bittersweet for moms, and especially the birthdays of your youngest. But I found myself hugging her extra tight this evening and appreciating this birthday more than I appreciated last years. She is in remission. She is beating cancer. I’m hoping for her to have about 100 more birthdays and just think, for at least 50 of them I don’t have to share her with a big gray rodent.

On a side note, sincere HUGE thanks to those of you who have gone in and made online donations through our Light the Night Team Kendrie and Madie website. I will be leaving the link up through September so if anyone else would like to sponsor us, it’s easy to do. And we appreciate it sincerely. If I’d given it much thought, knowing what amazing, kind-hearted, supportive friends that we have, I should have set our initial goal much higher! I’ll save the final total for the day of the walk, but want you to all know that each dollar counts and we thank you for each and every single one!

Wish Blaine luck this weekend, as he handles all the Mr. Mom duties for four days while I go scrapbook in a cabin in the Georgia mountains with nine other girlfriends. I plan on putting myself into a sugar and carbohydrate-induced coma, while he has to worry about entertaining three kids, most likely house-bound due to Hurricane Caroline (or Bonnie, or Rumplestiltskin, or whatever this one is called that’s supposed to dump ten inches of rain, even all the way up here!) I’m actually worried about our friends at the Lighthouse Retreat in Florida this week …. Sending up many positive thoughts that the weather doesn’t cause them any problems.

I’m also hoping the rain is not as severe as predicted because we are scheduled to attend the Atlanta Braves game on Monday with our friends the Connors. Brandon's mom Kristin was instrumental in getting Major League Baseball to donate one million game tickets; donation proceeds to benefit CureSearch National Childhood Cancer Foundation. It’s a remarkable initiative, many thanks to major league player Tom Glavine and his wife Chris, also. Check out available tickets in your city --- help support pediatric cancer research and enjoy a hot dog and a ball game, all at the same time! It sounds like a great way for us to spend Labor Day and I hope it’s not rained out. I also hope you all enjoy your holiday weekend, as well.

Love, Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: When that boy came to my table at the restaurant and tried to get me to stand up in my chair! What was he thinking???? I realize that has nothing to do with cancer, but I still didn’t like it!

BEST PART ABOUT HAVING CANCER TODAY: Tomorrow is my birthday!!! Wait, that doesn’t really have anything to do with cancer, either. It’s just darn exciting!