Wednesday, March 31, 2004


You can go back a few journal entries if you don't know what I'm talking about, but here is a list of things mentioned in Kendrie’s guestbook over the past week or two, of additional Canadian persons, places and things that all deserve mention. Not necessarily POSITIVE mention; after all, Jim Carey is on the list. (I am SO not a Jim Carey fan!) But mention, nonetheless.

The movie “Strange Brew” which I think was an earlier showcase of the beer-swilling voice talents from the moose of “Brother Bear” …………. I personally have never seen moose drink beer, but maybe this is where the two worlds intersect. ????

The Avonlea books. (what???? Are these the ones with Fabio on the cover?)

Music groups:
The Barenaked Ladies (their name makes me giggle)
Rush (total flashback to the 80's for me)
Triumph (another flashback ........ guess I'm dating myself)
The Guess Who (at least THIS group is too old for me!)
BTO (any group whose name is so long it can be reduced to syllables and people actually know who you're talking about, now THAT'S what I call success!)
Nickleback (only group on this list so far still getting any air time)
Avril Lavigne (Is it ok for an almost 40-something carpool mom to totally love Sk8er Boi???)

Actors and actresses:
Jim Carey (again, ugh)
Martin Short (totally loved Inner Space)
Mike Myers (woohoo, Shrek 2 is coming up!)
Dan Ackroyd
Lorne Michaels (the Bonanza guy???)
John Candy
Keanau Reeves (yummy!)
Christopher Plummer (who?)
Matthew Perry (all good Friends must come to an end, I suppose)
Donald and Keifer Sutherland (ok, the young one is cute, but the old one is creepy!)
Pamela Anderson (this joke is just too easy)
Kim Catrell (Blaine really liked her in the Mannequin-era, but not so much in the Sex & the City era. Of course, that could be because we don’t have HBO and he’s never actually *seen* Sex & the City.)
William Shatner (of “beam me up, Scotty” fame??)
and Monty Hall (when I first read this name in the guestbook I thought they meant Monty Python and I could have sworn he was British. Then the light bulb went off ……..the Let’s Make A Deal guy, right?)

Two very special angels: Angel Marcus and Angel Conor Please stop by their sites and let their families know you still care.

Smarties and Mars Bars

Relatives of a couple of great Caringbridge kids: Ashley and Conor

And as far as Blaine is concerned, the very best thing to come out of Canada; Canadian geese. He prefers them coming out of Canada in late fall, preferably flying right over his decoys, on their way to Florida.

Thanks to all our friends, both north and south of the border, who sent me these suggestions for our Canada-list. One of these days we hope to make it up there and see for ourselves all the great things offered there. Of course, after reading some of the testimonials of late, I think we'll wait until sometime in the summer to do so!!

Wednesday, March 24, 2004


WEEK 7, DI #1

I am a mother. I am also a cook, chauffeur, laundress, maid, homework-checker, lunch-packer, playdate organizer, and appointment planner, just to name a few. And occasionally, rarely, sometimes, in the eyes of my children, I get to be a HERO. Take last Wednesday for example. On our way to a playdate with friends at the park, I drove through the drive-through at Sonic (great rabbit-pellet ice; cups that don’t sweat) for drinks. I was in Blaine’s truck and the kids were on the bench-seat behind me. When I rolled down my window to place my order, a bee flew in the truck. NOT a giant, poisonous, mutant African stinging bee, but a teeny, tiny, not-much-bigger-than-a-fly bee. In the bee-world, this guy was definitely sitting way low on the totem pole. He was practically a Pre-Bee (a joke for the other leukemia parents that read this).

My children, of course, freak out. Especially my manly, rough, tough, all-boy son …. Who is squealing like a girl sitting in the front row of a Shawn Cassidy concert and practically climbing over the seat in front of him to escape the wrath of the gnat/bee. I wasn’t quite sure how to get the bee out since the back seat window doesn’t roll down. Kellen, being the great help that he is, starts screaming, “Get the skyscraper! Get the skyscraper!” I actually had to stop and think, before I realized he meant “ice scraper”, which I did, but couldn’t smack the thing with just the little pointy corner.

Finally, after several minutes frantically and unsuccessfully whacking the bee with the skyscraper, it occurred to me to simply open the back door to the truck (I know, I’m not the sharpest crayon in the box sometime) and the bee flew away, quite happily. At which point I got to bask in the glow of the “hero-dom” I acquired in the eyes of my children (especially my frantic, no-plans-to-be-a-beekeeper,-obviously-son.)

So who are *my* heroes? Today, I can think of three, collectively. First, all the medical staff, nurses, doctors and researchers who are working so hard to find a cure for leukemia, who have made such progress in the treatments to date, and who take care of my child on a daily basis. Truly, it’s more than a job, it’s a calling, and there is no way to thank them enough.

Secondly, Kendrie herself is a hero to me. Is it because she handles this battle with courage and grace? Is it because she suffers stoically the side effects from treatment, and bravely marches forward towards her ultimate cure, despite the harshness of the treatment itself?? It is the dignity and calm with which she faces each obstacle? Hell, no! She has a squeal that rivals her brother! She hates the treatment, the procedures, the medication---- and there isn’t a stoic bone in her body! But you know what? She gets through it anyway, despite how much she hates it, and that makes her my hero.

Lastly (for today; I reserve the right to add more heroes later) my hero is the anonymous person who donated blood in the Atlanta area sometime in the past 45 days. Kendrie’s count results from yesterday showed all of her counts dropped (as expected) and her hemoglobin dropped below the cut-off number for transfusion. So today we went up to the clinic so she could have the blood transfusion she needed to get her numbers back up to a safe level. Hemoglobin carries oxygen, and it was obvious by looking at her she didn’t have enough ….. pale complexion, pale lips, lots of naps. Three hours later, viola! Pink cheeks and energy to spare.

So who was this person who gave my daughter the gift of life today? I’ll never know. Our family is not allowed to direct donate to Kendrie in the event she might (God forbid) need a bone marrow transplant at some point in the future. If she were to receive blood from one of us, that would make that person ineligible to donate bone marrow to her if she were to relapse and need it. Of course family would be her best hope for a bone marrow match, so we can’t take ourselves out of the running like that (at least that is how it has been explained to me.)

So we depend on the kindness of strangers who are willing to donate blood for someone they don’t know. Someone who took an hour or two out of their schedule to give the precious gift of a blood or plasma or platelet donation. Someone who perhaps gave up a long lunch with friends and instead ate a sandwich at the donor center while donating. Someone who gave up a few hours at the gym, or the mall, or in front of their tv relaxing, so they could make a difference in the life of someone who needed help. Today that someone was my daughter and I am eternally grateful.

Please, consider donating yourself. If you’ve donated in the past, please do it again. Yes, it takes a few moments out of your day, but the positive ramifications of your selflessness are never-ending. GIVE LIFE 1-800-GIVE-LIFE (1-800-448-3543)

Stay tuned (stay tuned???? Who am I?? Jeff Probst???) for the new-and-improved Canadian list …. I had no idea how many cool Canadian things were out there, and will be sending out an updated version in my next journal entry. Thanks to all of you for your suggestions.


WORST PART ABOUT HAVING CANCER TODAY: The panic I felt when the nurse dropped my vial of blood and it shattered on the floor. Then I remembered my port was already accessed and I didn't have to get poked again.

BEST PART ABOUT HAVING CANCER TODAY: When my mom found out we would be making the drive to and from Atlanta today, plus spending six hours in the clinic, she went out and bought me a copy of "Daddy Day Care", my current favorite movie, to watch on our portable dvd player and keep myself entertained. At this rate, I'll have quite the little dvd collection before all is said and done! Watch out, Roper and Ebert!

Thursday, March 18, 2004


Week #6 of DI #1

I realize that title might be a bit misleading, considering we live in middle Georgia and pretty much anyone not residing at Disneyworld is technically a neighbor to our north. But today, specifically, I am speaking of that great country Canada and all it has to offer.

Despite living in Minot, ND for four years, only fifty or so miles from the Canadian border, I’ve not spent much time in the land of Cannuks. Blaine and I drove up once to the infamous International Peace Garden, a botanical garden which commemorates the long and peaceful co-existence of the people of Canada and the US. Straddling the cities of Boissevain, Manitoba and Dunseith, North Dakota, we made the two hour drive one spring day not realizing that as far north as we were, nothing much blooms until summer, so we basically drove two hours to see dirt. But what nice dirt it was!

So, I want to share with all of you a few ways in which the people of Canada have made our lives better, and more enjoyable, in case you weren’t aware, like I wasn’t aware.


1. Superman! Created by Joe Shuster of Toronto in 1938. (Let me speak up now and say that I got all of this information off of a Trivial Pursuit website and if any of it is inaccurate, well, that’s life.) While I don’t personally give two hoots about the Man of Steel, he and all his superhero friends have sure made my son and youngest daughter happy.

2. Long Distance Telephone Calls – made for the first time in 1876 by Alexander Graham Bell (geez, I always thought he was American) between the Ontario communities of Mount Pleasant and Brantford. While I don’t spend quite as much time on it as I did during my teen years, I still really love the phone. Especially my neon green cell one.

3. The Anti-Gravity Suit – invented by W.R. Franks at the University of Toronto in 1940. Well, I’ll be honest, it hasn’t really affected my life much, but I could sure be the life of the party if I brought one of these along!

4. Instant Mashed Potatoes – invented in 1961 by Edward Asselburgs of the Canadian Dept of Agriculture. I’ve never pretended to be Betty Crocker and these little babies have saved me HOURS in the kitchen! Just remember, though, if you’re feeding them to Kendrie during a steroid pulse --- white, with no spices, herbs, or pepper!

5. The Johnny Jumper – a ceiling suspension harness designed by Olivia Poole, mother of 7, to keep babies entertained. Mother of 7???? No wonder she invented it. My only complaint is that they don’t come in versions that will hold a kid who weighs 55 pounds.

6. The numerous people who have contributed to our lives through artistic contributions:

Michael J. Fox (best role ever, the voice of “Chance” in Homeward Bound … not that I’ve seen it about a MILLION times!)

Hume Cronyn (come on, is there *anyone* out there who didn’t love Cocoon?)

Bryan Adams, Alaniss Morissette, and Maynard Ferguson; musicians that I enjoy. Celine Dion, a musician that I DON’T enjoy, but I won’t hold that against anyone in Canada personally.

And yet, hands down, the best things to come out of Canada, at least in my opinion, are the online friendships I have made with other parents of kids with cancer. (Canadian parents, duh, otherwise what would be the point to the list?????) Let me introduce you to a few:

7. Katie, an adorable three year old who was diagnosed in August of 2003. Proud representative of Ottawa!

8. Benjamin, just diagnosed this past January, Benjamin and his family are originally from Australia, but claim Canada as home now. Welcome from your "southern" friends!

9. Lyza, diagnosed in October 2002, Lyza and her family just returned from her Make A Wish trip to DisneyWorld. Hopefully, after visiting Florida, they will think as highly of Americans as I think of her and her family!

10. And the inspiration for this list of all-things Canadian, Julianna Banana and her dad Terry. Terry graciously offered to help me get the music on this site working (shoot, he didn’t just help, he basically did it for me. I’m not sure whether he offered out of the kindness of his heart, or if he simply figured it would be easier to do than take out a restraining order after I sent him 8,000 e-mails begging for technical computer help! I’m so grateful to have music playing on a reliable basis, I’m considering having a tree planted in his honor, or a maple leaf tattood on my …………, never mind.) Julianna was dx just a month before Kendrie and in that short time has cultivated a phenomenal fan club on the internet with her witty and inspirational journal messages. Anyone interested in showing support for Julianna and her fight against leukemia can log on to her Caringbridge page and follow the instructions to request one of her Pink Wish Bracelets. Here is a photo showing my and my friend Kelly E., a fellow CB surfer and supporter, wearing our bracelets. Personally, I won’t be taking mine off until both Julianna and Kendrie are done with their treatments and well on their way to planning a Canadian-U.S.-We’ve-Kicked-Leukemia’s-Ass-Reunion!

Photo taken March 17, 2004, Georgia

Please take a minute to stop by these sites and offer the families a word of encouragement.

As for things in the Land of Escoe, this week has definitely been the hardest on Kendrie since getting over induction. We have renamed her “Princess Barfs a Lot and Sleeps Even More” I assume it is the ara-c shots I have been giving her at the house that are causing the reactions. I know her body needs the rest, but two or three naps a day, coming from the child who gave up napping at 20 months, does feel odd. Too bad I can't get her brother and sister to join her, ha!

I want to say a special thank you to all of you who have made comments in our guestbook about living close enough to us to join us for dinner at IHOP, or commiserating in some other fashion. I thought of that yesterday, when Kendrie was on her hands and knees retching in the front yard, and my next door neighbor walked out to the curb to get his mail, glanced our direction, and didn’t even bother to wave. I’ll give him the benefit of the doubt, that perhaps he felt awkward or uncomfortable witnessing first hand that sort of scene, but a simple “Hey, do you need anything?” would have been nice.

Starting Monday, we have the next two weeks OFF from chemo (wahoo, wahoo, it’s a party, wahoo) and except for the antibiotic on the weekends, all we will be doing are local labs for blood counts. I am certainly expecting her numbers to have dropped way down at this point, especially given how tired she is.

So I guess that’s it for now. Just my quick thank-you note to all of Canada (Candian Bacon! How could I have forgotten Canadian Bacon?!?!?!) and all that you’ve done for me personally. Oh, and the only reason I didn't mention my friend Jadine from Canada is because she claims Texas now, but of course she is at the top of the list! If any of you, especially anyone from Canada, have any additions to my list, let me know and I'll add them in! Did I mention I also really like that Twelve Days of Beer song? Weren't those guys Canadian, too?

Have a great weekend, everyone,

ps. One last thing. A little boy on my online group, Spencer Rocket who relapsed last month is having a bit of a hard time getting back into remission and is suffering terribly from the side effects of the drugs. His family is hospital bound for quite some time and I know they could use some messages of support and encouragement. Be sure to visit the photo album when you go to Spencer's site.... he is one of the cutest kids I have ever seen! Kerri and Brian, we are thinking of you and praying for Spencer every night!

I am missing a LOT of good tv time because I keep falling asleep everywhere ….. the sofa, my bed, mom’s bed ….

(this time, it’s Kristie talking) The fact that she was sleeping so heavy tonight I was able to give her the shot in her leg without her even waking up! And it’s the last shot for several months --- thank heavens!!!

Saturday, March 13, 2004

Parenting 101

OK, I need whoever borrowed my “327 Easy Steps to Successful Parenting” book to return it to me as soon as possible, since I appear to have forgotten steps #1 through #326. Step #327….”Just show up for the job on a daily basis”, which I am doing, doesn’t appear to be enough.

I can’t decide what is worse. To be annoyed at a kid who has cancer. To be annoyed at her siblings. To feel guilty for feeling annoyed. To feel annoyed for feeling guilty because they’re acting like brats and they deserve to have me annoyed at them.

Logically, in my head, I don’t think parenting a child with cancer should be done any differently than it was done before the diagnosis. And I was pretty comfortable with my parenting style before, so why am I crazy with indecision now? Why, suddenly, am I a Flying Wallenda of Parenting, walking precariously on a tightrope that stretches across two years of chemotherapy??

Kendrie’s doctor told me, just a few days after we met him for the first time in the hospital, that the worst side effect from leukemia is the spoiling done by the parents, who feel guilty for the cancer ….. and who then wind up raising cancer survivors; albeit bratty, spoiled, whiny cancer survivors. I’m not so much worried my kids will be bratty, spoiled whiners as much as I am worried I might put them on the curb with a “For Sale Cheap” sign around their necks at the rate things are going.

What happened to the promises I made to myself when she was in the hospital those awful first two weeks--- that from now on I would be more patient, and make more time for my kids, and enjoy them more? That if she just came home soon then I would be the kind of parent I know I should be, fun-loving and kind and never frustrated by the daily grind of it all? That I wouldn’t stress about the little things and I would be like the parents I see pictured in Family Fun magazine who are wearing goofy hats and Superman capes and chasing their kids around the house, laughing and waving magic wands. Don’t those little magazine kids ever get on their nerves so bad they just want to pinch their little heads off????

Apparently another side effect from chemo they don’t warn you about is that your child will emotionally regress, at least on occasion, by about half. ‘Cause I’d say Kendrie is definitely acting like a two-year old some days. Granted, when she was first diagnosed and in so much pain …. and then in the following weeks when she was suffering from the steroids, weight gain and initial meds, it was practically impossible for her to walk. So, we carried her everywhere, and willingly. Now she still wants to be carried and it makes me crazy. But I don’t know how bad her legs might really hurt from the chemo, so I carry her, all 35 pounds of her, and then gripe about my recently diagnosed tennis-elbow. In the beginning, we also catered to her steroid-induced, nonstop food cravings. Remember, I had Pizza Hut on speed dial. This morning, I told her she couldn’t have a spoonful of butter for breakfast and she wailed for fifteen minutes. I wanted to throw the tub of Shedd’s Spread at her just to shut her up but thought it was more important that I stand my ground. We wound up compromising on toast with LOTS of butter. Sure, when they're on steroids you give them pretty much what they want. But what about the *rest* of the time???

The poor kid is putting up with so much shit on a daily basis that I do feel the urge to cater to her and make parts of her life --at least the parts that I have control over-- a little easier. But then the voice in the back of my head (one of them; there are several) reminds me that I’m not doing it for Brayden or Kellen, and I’m probably not doing Kendrie any favors. The more you do for them, the more the little rugrats expect it, nay, demand it!

She has begun to point to things and grunt and whine …. My God it is making me insane. We never could stand the pointing and grunting and whining, which is why we taught our kids rudimentary sign-language when they were little. If I didn’t want to hear it from a one-year old, why should I have to listen to it from a four-year old? And tonight she wanted me to come into her bedroom and cover her up with a blanket. So what method did she choose to try and accomplish that? Laying in bed, whining a single solitary syllable louder and louder and louder until I simply could not ignore it any longer. I went to the door of her room and asked her what she wanted.

Kendrie: “whine whine grumble grumble”

Mom: “I’m sorry, I can’t understand you when you whine”

Kendrie: “I’m cold”

Mom: “Well, I’m certainly sorry to hear that. Is there something I can do to help?”

Kendrie “cover me up”

Mom: “you know, there’s a right way and a wrong way to ask for things. Maybe you should try again”

Kendrie: “I want you to cover me up”

Mom: “I want you to cover me up ----- what?” (I was going for “please” here)

Kendrie: “I want you to cover me up now.”

The following are all actual comments, spoken by our family members, in the last 24 hours. See how many comments you can match with the right family member:

1. “Since when do you not like crust on bread?”
“Since I got cancer.”

2. “I’m not making you a waffle until you eat the toast.”
“But the toast is too brown and crunchy”

3. “Kellen is snoring and I can’t sleep with the noise.”
“Kellen is not snoring, he’s simply breathing.”
“Well make him stop”

4. “Uuuuggghh! Why do I have to do EVERYTHING around here?!?!?!?!”(stomp stomp stomp)

5. “Move out of my way, I can’t see the tv!”
“He’s a tattle-teller!”
“He won’t let me have a turn!”
“It’s not fair!”
“They completely messed up my room!”
“She’s looking at me!”

6. “I’m bored. We haven’t done anything fun today.” (this was after being taken to two city parks, a Burger King with a play-land and a soccer game.)

7. “I WANT MY DADDY!!” (who happens to be in Charleston this weekend.)

8. “Well you can tell her that despite what she thinks the world doesn’t revolve around her and if she wants me to get that for her she needs to quit throwing that little fit and come ask me properly.”


1. Kristie and Kendrie
2. Kristie and Kendrie
3. Kristie and Kendrie (no big surprises here)
4. Despite what you might think, it wasn't Kristie! Correct answer is Brayden, after being asked to pick up her room.
5. Insert the names of all three children, in any random order.
6. Kellen, ungrateful brat
7. Kendrie (this one doesn't upset me too much because Blaine assures me that when she is with him and he does something to make her angry she yells that she wants me.)
8. ME!

Please, I’m begging you. Return my parenting book to me before DFACS shows up on my doorstep! And if you don’t have my parenting book, any large, hardcover book that I can use to hit myself over the head will do.

Thanks for checking the website, and special thanks to all of you that take the time to sign the guestbook. We really enjoy the messages. :)
love, Kristie



WORST THING ABOUT HAVING CANCER TODAY: Well, spring is coming and it's getting a little too hot for my Spiderman cap. My head got REALLY sweaty at Brayden's soccer game today. I am not looking forward to packing away my favorite hat until next winter (when hopefully I will have hair again and maybe not even need a hat!) You can see how much I love this cap in the new pictures mom put up on this page.

BEST THING ABOUT HAVING CANCER TODAY: I finished my sticker chart for all the leg shots my mom gave me this week ... which were not fun at ALL ... no wonder she's not a nurse .... but that means I will get to pick a prize out of the treasure chest at my clinic visit on Monday! And Brayden and Kellen are going with us since they are on Spring Break, yippee!

Monday, March 08, 2004

“Pulp Fiction”

2nd Half of DI #1

OK, you know those “FBI Most Wanted” posters that adorn the local post office? Or the handwritten notes you sometimes see on the cash registers of stores about not accepting checks from certain people? Well, I’m pretty sure Kendrie and I are next in line, to have our images plastered in IHOP restaurants nation-wide with a big notice underneath about “Do NOT serve these women in this restaurant!” Or maybe they’ll just put a picture of my big fat head, with a circle and a slash through it.

You see, Blaine and I started a new family tradition this year (is it already a tradition if we just started it? When does something actually *become* a tradition? Sort of like “1st Annual” … how can it be annual, if it’s only the first time?? But I digress………..) of pairing up, one kid with one parent, every Saturday morning for breakfast. We go round-robin, so the kids take turns going one at a time with Blaine for three weeks, then the next three weeks they go one at a time with me. The goal is an hour of uninterrupted time to visit and spend quality time together, just one kid with one parent. The idea behind it is when they become hormone-crazed, drug-addled, psychotic juvenile delinquents; at least the lines of communication will be open!

Saturday was Kendrie’s turn to go to breakfast with me. The kids get to choose the restaurant and for six weeks in a row, each kid has chosen IHOP. That’s fine with me; I like IHOP. So Kendrie and I go, and I asked to be seated as close to the bathroom as possible. (Warning, graphic information ahead) She had had diarrhea for three days at that point and I didn’t want to spend all morning walking through the restaurant if I didn’t have to. The host, a pleasant guy named Jerome, said no problem, and then proceeded to walk us to the booth as far from the bathroom as possible. I said, “I’m sorry, I wanted NEAR the restroom.” He looked at me like, “would you make up your mind, lady?” and moved us. Then he asked us what we would like to drink. This is the conversation, verbatim:

Kristie: “She’ll have chocolate milk and I’d like a large orange juice. Wait. Does the orange juice have pulp in it?”

Jerome: “Pulp?”

Kristie: “yes, pulp”

Jerome: “pulp?”

Kristie, “Yeah, you know, pulp

Jerome: “pulp?”

Kristie (speaking louder, in case Jerome was hard of hearing) “pulp. PULP. Does the orange juice have PULP in it?”

Jerome: (shrugs shoulders) “Uhhh, you’re asking the wrong person.”

The obvious question should have been, “Well, then who exactly do you suggest I ask?” but instead I just said, “Never mind, water.”

Then our waiter came over and took our order (chocolate chip pancakes, which by the way were FABULOUS if you’re going to IHOP anytime soon.) While we were waiting on our food, Kendrie entertained herself by coloring on the kids’ menu cartoon with the crayons they provided. Or I should say, trying to color. The only gave her gray, green and brown which doesn’t provide a lot of options. We were visiting, running back and forth to the bathroom, waiting politely, and at last the food arrived. I reached across the table to pour syrup on Kendrie’s pancakes, and then made what will go down in history as the smoothest move ever …. Set the syrup bottle down on her crayola masterpiece, getting a single, solitary drop of pancake syrup on the picture and ruining it forever.

Immediately, tears well up and I can see my grave mistake. Despite my assurances that we can get her a new, clean menu on the way out ….. she keeps getting more and more upset. Then, suddenly, with no warning, she went past “fussing” into all-out crying and came around the table to climb in my lap.

I was more than a little bewildered (it’s just a silly menu, after all, with a crummy color selection to begin with) and kept asking her what was wrong. Finally, she whispered in a dramatic stage voice, “Those people are getting too close to me!” I looked around, confused, as the tables on either side of us were empty. “Who are?” I asked. “Those people!! (Pause) I don’t know!” she wailed. “Good heavens, the chemo meds are making her hallucinate!” was my first thought. Just then, our waiter walked past and asked if anything was wrong. “We need a new kids’ menu, please” I said, with a slight look of panic in my eye. He innocently asked, “Oh, is there something wrong with her pancakes?” Kendrie is sobbing, people are staring, and in a voice similar to the one that came out of the little girl on The Exorcist, I hiss, “We don’t need food, just a clean menu”. I could see the thought in his eyes, “Jerome was right… this lady is a nutcase” but he did bring me a clean menu.

Then tonight, on our way home from Atlanta, we stopped for dinner at, you guessed it, IHOP. The thing I love about IHOP is that they serve pretty much everything, 24 hours a day. About the only thing they don’t serve is macaroni and cheese. Tonight for dinner, Kendrie decided she wanted macaroni and cheese. (Sigh.) So the waiter was standing at our table, and I was trying to explain to Kendrie that they didn’t have any mac & cheese. I’m running down the list of the other items she can choose, she’s shaking her head at every one, and the waiter finally says, “I’ll just go get your drinks while you decide” which everyone knows is Waiter-speak for “God, I hate my job and all the stupid people that come in here.”

Kendrie reluctantly agreed to eat mashed potatoes, and I clearly explained to the waiter that I needed them to be served WHITE. No pepper, no peel, no herbs or spices. WHITE. So then of course he brought them out with brown gravy on them and I had to send them back. He did then bring white potatoes, stopping only long enough to spit in them, I’m pretty sure. Then Kendrie didn’t touch the potatoes and only ate the butter that came on the side. Then she decided she wanted ice cream and the waiter looked at me like, “you have GOT to be kidding me!” and I broke down and said, “Hey, she’s on chemotherapy and I let her eat whatever tastes good, just so she eats.” But I still don’t think it bought us much sympathy. Especially when she announced the ice cream was “too cold” and didn’t eat it either. So I figure the next time I go into either of those two IHOPs, I will see my picture on the wall as a mug shot of sorts, and all the waiters will be playing even/odds to see who gets stuck with our table. Good thing there’s a Cracker Barrel just down the road.

Oh, the other interesting thing that happened at IHOP tonight was when a family came in and sat across the room from us. I could see the kids looking at Kendrie, and whispering to their parents, and I’ll admit I was a bit surprised. She had on a hat and I didn’t think it was obvious she was bald, but those kids could tell something was up. Then, when we got up on one of our numerous trips to the bathroom, I realized the guy in the booth behind us was an albino! I don’t know why I think that was so fascinating, except I can only remember seeing an albino one other time in my whole life. And hey, he WAS a lot more interesting looking than a little bald kid.

So our dinner at IHOP capped off a very long day for Kendrie, as she started the second half of her Delayed Intensification phase. The day began with an exam and port access at 8:30, then she had a spinal tap at 9:30, then an hour of iv hydration, then received zofran (anti-nausea drug) and two new chemo meds, cytoxan and cytarabine (both of which disrupt the DNA in cancer cells, preventing reproduction of those cells) followed by three more hours of iv hydration (to prevent possible bladder damage that these drugs can cause). She was tired and grumpy and bored and fussy.

Adding insult to injury was the fact she caught the stomach bug that Brayden and Kellen had last week and has had diarrhea for five days. In fact, she lost three pounds this week because of it. That's ten percent of her body weight, which is quite a bit for a little kid. But the insult came with the discovery that the AFLAC cancer center apparently orders their toilet paper from the "Acme Tree-Bark Company", and it was not a pleasant discovery, let me tell you. So bad, in fact, that I wound up going down to the parking garage to get some extra baby wipes out of the car. But, too little too late and we came home with an additional prescription for butt cream. So I have no doubt that sitting around the clinic for eight hours today didn’t help matters any. Also, once we arrived home she started her 14 days of oral 6-TG, and we’ll be giving her shots for the next three days.

I expressed concern to the oncologist that her counts hadn’t fallen yet. Chemotherapy is a double-edged sword. You want your child to feel well and not suffer too many side effects, but when their blood counts stay high, you worry that the chemo isn’t effective enough. After all, if it’s not even killing off the “good” cells how can it kill off the cancer cells? The doctor’s comment was “Don’t worry, even if her counts haven’t fallen in the first half of DI, you can bet they will in the second half.” So now we’ll wait and see what happens. Cytarabine (the shots we will administer) often causes fever so we have been instructed to watch for that. It also causes nausea so we will be giving anti-nausea medicine half an hour beforehand. But the biggest challenge comes with the oral medication, which must be given on an empty stomach at bedtime, no food or dairy for two hours before or two hours after. Preferably given right before bedtime. If the raw heiney doesn’t push her over the edge, going to bed without her beloved glass of chocolate milk certainly will.

Oh, and speaking of being pushed over the edge, apparently the little rodent who invented the computer virus that wiped out my hard drive last week has an even bigger geek cousin --- who hacked into my Pay Pal account today and bought a thousand dollars worth of Star Wars memorabilia and games with my credit card! Star Wars games!!! I mean, for Pete’s sake, if you’re going to be a thief, be a cool thief and buy big screen TV’s, or clothes, or jewelry. But Star Wars junk????? Come on! Thank heavens the site they ordered from raised a red flag since the person spent over a thousand dollars in less than 24 hours and so the company cancelled all the orders. Pay Pal assures me my card is secure …..

If it gets too crazy, can I call one of you to have dinner with me at IHOP and commiserate?

WORST THING ABOUT HAVING CANCER TODAY: Spending all stinkin’ day at that clinic! AND! I got a back poke and was supposed to get something out of the treasure box and my mom forgot about it with all the other stuff going on!

BEST THING ABOUT HAVING CANCER TODAY: Doing arts & crafts with Ms. Laura, the child-life specialist. I made a butterfly picture that she is submitting for a cancer-card contest. If they decide to print it, I will send everybody one!

Tuesday, March 02, 2004

Three Surprising Facts About Parenthood

For those of you that don’t know our family, let me introduce us: There are Blaine and Kristie (that’s me) the “supposed” grownups in the group; Brayden, our oldest daughter who turned seven last month; Kellen, our son who will turn six this month; and of course Kendrie, who celebrated her “half” birthday today, turning four and a half. (When you are this age, the “half” is very important!)

So we have been parents for slightly over seven years. Parenthood is not something we backed into or stumbled into or fell into. It was anticipated, hoped for and worked for. And while we were basically prepared (no stopping on the way home from the hospital for diapers …. We had plenty already!) there were a few things that took me by surprise, no matter how much the veterans of the parenting world tried to warn us.

Surprise Fact #1: You really, truly DO love them more than you thought possible. Parents everywhere (at least the good ones, anyway) understand exactly what I mean. And when your child is diagnosed with a life-threatening illness, that love goes deeper, stronger, more desperate. Of course, the flip side to that is when the dog is barking and the dinner is burning and the kids are fighting and the house is a mess and the phone is ringing and then you step on a lego, one of the really pointy ones that hurt your foot … well, then those same kids can really annoy you more than you thought possible, too, but for the most part, you feel the love.

Surprise Fact #2: They are WAY more work than anyone warned you. Initially I thought it was because we had three kids in two and a half years and once they were out of diapers things would slow down. But we traded diapers for potty training, and went from potty training to pre-school, then to real school, now we’re in Scouts and sports and I serve as a taxicab and helping with homework not to mention the housework and cooking and shopping and the laundry, good GRIEF the never-ending mountains of laundry!!! But of course the minute one of them snuggles on the couch to read a book with you, it’s all worth it. And since Kendrie’s diagnosis, let me just say there has been LOTS more snuggling than there even used to be.

Surprise Fact #3: You worry more than you thought possible, too. Used to be, we worried the “normal” parent worries, about things like saving for college, the state of the world, were they eating enough vegetables, wearing their bike helmets, things like that. Did we worry that one of our children would be diagnosed with leukemia? Nope, never crossed our minds. But it happened, and brought on a whole new set of worries. Short-term worries, not too serious, like Dear GOD don’t let me run out of Mac & Cheese while she’s on a steroid pulse, and, what if her hair grows back in curly and I don’t know how to fix it? Worries about the side effects from chemotherapy. And of course, the biggest, most frightening worry of all, one that all cancer-parents universally share, the worry that the chemo won’t be enough and your child will relapse. Because no matter how much you love them, or how hard you are willing to work, a relapse can happen at anytime, to anyone.

I think this worry is especially strong for me right now due to circumstance: two great kids we have gotten to know online relapsed this past week. That brings the total to six in the five months since Kendrie was diagnosed. And of course, that’s only the six that I know. Obviously there are lots more out there.

Having relapsed, do these kids still have a fighting chance? Of course they do. It’s just that their fight gets harder, longer, more painful. More frightening, and of course, more worry for their parents. If you have time, please stop by their sites and leave a note of encouragement in their guestbooks.

Julianna Banana Julianna was diagnosed with ALL on September 4, 2003 and relapsed less than four months into treatment, on New Years Eve 2003. Julianna’s dad Terry is fast-becoming something of a Caring Bridge comic legend, so visit their site and sign her guestbook, but I warn you to wear Depends as you read back through her journal history. Also consider getting one of her pink wish bracelets, to show your encouragement for Julianna. (I’m waiting patiently for mine to arrive ……….. hint, hint!)

Cameron --Cameron relapsed on December 9, 2003, and is preparing for his upcoming bone marrow transplant, with his brother Chad as his donor. Please stop by their site and wish the family well as they head to Philadelphia for his transplant.

Lakota-- Lakota was originally diagnosed with ALL on September 29, 2002 and relapsed only a few days ago. Sadly, Lakota has already lost a brother to leukemia, so if you could offer the family a note of support at this frightening time, I’m sure it would be greatly appreciated.

Marcus ---Marcus was originally diagnosed on April 4, 2003 and had a bone marrow transplant in August. Marcus relapsed in November at almost 100 days post transplant. Sadly, Marcus contracted chicken pox during this time and was unable to fight off the infection, earning his angel wings on January 14, 2004.

Kevin --Kevin was first diagnosed on February 10, 1998, less than two years after his big brother Brian’s ALL diagnosis. After two and a half years of chemotherapy and over three years off-treatment, Kevin relapsed on October 30, 2003. (Kevin actually relapsed the first day I joined my online support group. I clearly remember logging onto my new list-serve and reading how devastated everyone was, with me still not understanding exactly what was going on.)

Spencer Rocket --Spencer was diagnosed with ALL on Kendrie’s birthday, September 2, 2003. He relapsed just this past week, and his parents are hard at work, investigating their options and gathering information to make their decision about bone marrow transplants vs. cord blood transplants and which will give Spencer the best chance to beat leukemia once and for all.

Please take a minute to stop by all of these sites and wish them well.

I mention these children and their stories to you so you can get a better understanding of life as a cancer parent and how the worry changes from “normal” to “beyond abnormal.” Sometimes I wonder if I will ever be able to relax again. I’m not a worrier by nature and I hate this dark cloud that has descended over me. Most of the time I am able to push it to the back recesses of my mind (or what’s left of my mind) and focus on being cheerful, optimistic and even (dare I say?) poking fun at this whole cancer ordeal. But a cancer parent never completely escapes it. Kendrie has cried the last two days that her legs hurt, which was her primary complaint at the time of diagnosis. She climbed into bed with us last night and whimpered throughout most of the night despite the pain medication we gave her. What are the side effects of the chemo drugs she is on right now? Bone and joint pain. I lay in bed last night, willing my imagination not to go the direction it was going, reminding myself that aches and pains are a normal part of chemotherapy. But does that mean I can let the worry go? I’m afraid the answer to that question is going to be NEVER.

I’ve read in books that parents can come to resent the worry, and go so far as to become angry with one another, or even the child, for “making” them worry so much. I can’t imagine doing that, so I think for now I’ll concentrate on disliking my hairdresser, since she’s the one who’s going to get rich off of cancer, as I will have to pay her so much to color my hair and hide all the gray that’s come up in the last five months. :)

Speaking of dislike, I have to say that I am really annoyed at whoever the little rodent was that invented the mydoom virus. I won’t go into great detail except to say that if you’ve sent me a private e-mail in the past few weeks and haven’t gotten an answer from me, you won’t now either because my entire hard drive was erased. Adding insult to injury, I had to PAY someone to erase the hard drive! So please forgive me while I get my system back up and running again.

On a more cheerful note, thanks to Daisy Troop 121 of Bellbrook, Ohio for the great care package they sent to Kendrie. She and her brother and sister hadn’t yet discovered pop-rocks, so that was a huge treat! And special thanks to their leader, Julie M, who not only organized the care package and cards, but was inspired to donate blood for the very first time! Way to go, Julie!

And thanks also to Brianna R of Pflugerville, TX for finishing the CB List of 100. I meant to congratulate her several entries ago, so hopefully better late than never. Thanks, Brianna, for taking the time to visit all those sites.

And thanks to all of you for letting me share my worry with you tonight. I’ll down a couple of pounds of leftover Valentines chocolate and come back more chipper next time.

Love, Kristie

WORST PART ABOUT HAVING CANCER TODAY: My legs are really achy and my hands are trembling like a little old lady's!

BEST PART ABOUT HAVING CANCER TOAY: I didn't have to have a needle stick today! (Hey, it might not sound like much to you, but after the trauma I felt having blood drawn yesterday, having today *off* was a huge plus!