BRIDGE OVER TROUBLED WATER

Day 14 OT --- Two weeks already, wahoo!

I feel slightly like a teller of “tall tales” to call the past twenty-six months of our life “troubled water”. Oh, sure, the first two months after Kendrie’s leukemia diagnosis were rough and choppy … it felt pretty much like being rushed downstream of a swollen river, not willingly, by the way, without a life jacket, going under and gulping for air, and crashing into uprooted, floating trees and churning, bloated animal carcasses, all the while terrified that when you turned round the next bend, there would be a giant, rushing waterfall just waiting to suck you over and plunge your defenseless body down onto the slippery, pointed, jagged rocks below. You know, something like that. If I were prone to exaggeration. Or whatever.

Once we got past the first two months of induction and consolidation, however, we were lucky. We were pretty much able to tread water for the next two years with very little in the way of turbulence. But that in NO way stopped the outpouring of love and care we received from strangers, friends, and strangers who *became* friends. To say you were our “bridge over troubled water” is like calling Paris Hilton “slightly” ego-centric. Our friends and supports weren’t a simple bridge. You have been the Golden Gate Suspension Bridge of our lives!

I want to thank everyone from the bottom of my heart for all the wonderful notes, e-mails, guestbook messages, cards, care packages and gifts you have sent our family. I tried answering every single one personally, but just ran out of time before it seemed like it had been “too” long. I’m still working on the official thank you notes, but wanted to take this chance to publicly thank all of you for your kindness. Add in the fact Christmas was just a week later, and my kids are basically rolling in it. Short of winning the lottery (which will be difficult since we don’t *play* the lottery) they will probably never have another year like this one, so I sure hope they appreciate it as much as I do! Thanks to all of you.

Now, it's almost two weeks after the fact, but better late than never, right? Here are the photos and details of Kendrie’s Off-Treatment Party, which I am happy to say was a complete success. Well, I suppose I shouldn’t speak for the guests, some of whom drove ten, a hundred, or a thousand miles to be with us …… but *I* had a great time! My only complaint about the entire day was that it was a little bit cool and damp. BUT! My specific prayer was for “no rain” and I got that (it stopped about two hours before the party!) so I’m not going to gripe about the weather. Any more. At least not out loud.

And let me say up front that there is no way my Geocities site can support all these photos at once, for long periods of time, so if you can’t see all the pictures, please visit the site again later. Those pesky little red x’s should be gone eventually.




We knew the party was off to a great start when we blew a fuse heating up the hot dogs … er, I mean, chicken cordon bleu, in the microwave(s). Thank goodness none of the kids were in the bounce house when it collapsed. You can tell by the excitement on my nephew Lawson’s face that this was the coolest part of the entire celebration.




The TRUE miracle of Christmas was that I was able to stand up in front of 75 guests and give a welcome speech without vomiting or fainting. My speech started out like this: “If you had asked me prior to October 13, 2003, what my biggest fear was, I would have told you -- honestly -- public speaking. On that day, the day Kendrie was diagnosed with leukemia, my priorities certainly changed and I learned about real fear. But if you were to ask me today, I could tell you -- honestly -- that standing up in front of a crowd and talking is STILL in the Top Three, so bear with me while I fumble my way through this.” (Notice my pink Julianna-Banana wish bracelets on my wrist? Kendrie is done with treatment, but Julianna still has a few months to go, and those bracelets aren't coming off yet!)

Blaine and I wanted our guests to know how very, VERY much we appreciated them joining us for the party, so I sucked it up and talked. Not well, but I did it. We had friends who were local, including four of the teachers from Kendrie’s school, friends who came down from Atlanta (part of our “cancer crowd”), friends who came up from Moultrie (also part of our “cancer crowd”), friends who drove up from Florida, friends who drove down (over?) from Virginia, friends who were here from Maryland, my family who came from Oklahoma, and my best friend Kim who surprised me by showing up on my doorstep the night before the party from Ohio. Not only that, but she came bearing four gallons of ice cream. Now I ask you, is that a best friend or what?!?!?

We also wanted to do something to let Brayden and Kellen know how proud we were of them and all they went through themselves during Kendrie’s treatment. This part of my speech went something like this: “You’ve been dumped off at friend’s houses, left with grandma, and learned the meaning of after-school care. You’ve stuck up for Kendrie at school, hung out with her at home, and definitely gotten the short end of the stick the past two years …. Etc.”



So we bought them trophies that said, respectively, “Brayden Escoe, December 15, 2005, World’s Best Big Sister”. Kellen, especially, seemed to like his. At least he hoisted it overhead like it was an Olympic medal, so either he liked it, or his arm really needed some exercise.




And then I called Kendrie up. I have no idea what I said to her because I was practically hyperventilating at this point (have I mentioned I have a real fear of public speaking?) But she really liked her trophy and has it sitting on a place on honor in her bedroom.

Then, because we wanted to acknowledge all the kids there who have fought the same fight as Kendrie, we passed out medals that said, “No #1, I’m an Official Cancer Butt-Kicker” to Brandon, Brady, Mary Grace, and Chandler. We were sad that several of our other friends from this pediatric cancer world got sick and couldn’t join us, but I have the medals and plan to send them on to you all this week! We know you were there in thought.

Then, in order to thank all of the kids there …. whether they lived far away and sent Kendrie cards, or hung out with her at school, or invited us to their houses to play … they all helped her to have as normal of two years as is possible to have when you’re undergoing chemotherapy. So we gave all of them the following buttons to wear:


(Wow, I didn't do a very good job re-sizing this photo, did I?)

This is when I realized that I had used the word “Butt” an awful lot at this party. I mean, did you see our family shirts?



Kendrie's says, "I'm a Survivor; I kicked Cancer's Butt". Mine and Blaine's both say "Our Daughter Kicked Cancer's Butt" and Brayden and Kellen's both say, "My Sister Kicked Cancer's Butt". If you're interested, we ordered them at cafepress.com.

So to all the parents at the party, my sincere apologies that I sent your child home with a party favor that had the word “butt” on it. Really, my bad.

Then, on to the entertainment of the day (in case my speech wasn’t as entertaining as I had hoped when I practiced it in the shower that morning, ha!) we had a magician come and perform. He’s really good, and has a great sense of humor. I think the kids and adults alike enjoyed it, except my brother-in-law Cliff, who was determined to figure out each and every trick. (Cliff, I’m telling you, I don’t know *how* he got all eleven coins back in my hand!)



The perk of being the “party girl of honor” is that you get called up with your brother and sister, and cousin, for almost every single trick! I don't know if you can tell it in this photo, but Kendrie was cracking up. Normally when she is in front of other people, she pulls the incredibly annoying "I'm so bashful I'm going to bury my face in my mother's big fat thigh" routine. But here, she was in her element and loved every single minute of it.

Then, on to what was the highlight of the party for me: letting Kendrie throw her leftover chemo pills in the lake! Er, pond. Well, ok, big ole’ puddle of rain water. But it worked! (Guess I should be grateful for that rain after all, since it meant we didn’t have to schlep over to the other lake.)



“Seriously, you’re going to let me throw this in the water????”




Kendrie gets ready to throw……………..




Kendrie throwing pills (if you look in the bottom right hand corner of the photo, you can see the pills flying through the air) …………




The remains of the pills, floating in the puddle. I should point out that my mom was freaking out that if we threw the pills in the “real” lake, a fish would eat them, then someone would catch the fish and take it home and fry it and feed it to their family, then the entire family would start glowing or something. So I’m sure my mom was exceptionally happy that we threw them in a puddle, instead. I’m quite positive that once they re-fill the lake next spring, whatever plant life grows in that one spot will be very large, and very green.

Anyway, the rest of the party was all about eating (hot dogs and chips, soda, and a big ole; make-your-own-sundae bar …. Are we high-class or what?) chatting, and watching the kids enjoy the moonwalk.

A few other fun things we did: I filled a jar with M&Ms to represent the number of chemo pills Kendrie took during treatment, then we let everyone take a guess and gave the jar to the person who guessed closest: The winner: (no cheating involved, I swear) my nephew Dalton …. the actual number of pills: 2121.

We also posted a few questions to see who might know the answers (it was funny to me that the other ALL mom at the party said to me, “You know, those questions were pretty easy” --- for her, I’m sure they were, ha!)

1. Number of ambulance rides Kendrie has taken: Two.

2. Number of days she has been inpatient during treatment: Twenty-five.

3. Number of times she has been stuck in the chest, arm, or leg, for flu shots, peg shots, arac shots, blood draws, or chemo: 115.

4. Number of blood transfusions she has received during treatment: Eight.

5. Her preventative antibiotic, Bactrim, she takes in a liquid form. How much has she taken over the past twenty-six months? Three and a half gallons.

Those sorts of questions …. I don’t know if anyone else found them interesting, but some of the numbers surprised me when I went back through her treatment protocol and added them up. Bear in mind that the 2121 pills she has swallowed is a fairly LOW number in comparison to other ALL kids. Chemo is based on weight, and obviously, lots of kids on treatment are older and heavier than her, so they get more pills. Also, Kendrie is a girl, which means one year less of treatment than the boys get (and not because they are stinky, like it says above, but because the testicles are sanctuary sites for leukemia cells) and like I mentioned earlier, she took her Bactrim in liquid form, not pills. So if *you* ever get invited to an Off-Treatment party and they play the M&M challenge ….. remember Kendrie was at 2121 and you’ll probably want to guess up from there! (Who would have imagined that taking over two thousand pills in two years would be a LOW number?)

And that was pretty much the party in a nutshell. Thanks to the guys who helped load up the cars afterwards, and helped put away the moonwalk, thanks to Susan and Ray for helping put away the chairs, thanks to Renee for the potato salad, thanks to Renee and Erin and I’m not sure who else for putting together all the hot dogs while I sat on my keister and visited with people, thanks to Andrea and Kelly and Kim and BoBo for being on picture patrol, thanks to everyone who made the effort to come to the party. … especially those of you who gave up an entire day, or entire weekend, to join us! Thanks to Postcard Cindy for the providing the sundae bar, thanks to everyone for their donations for Caringbridge and CureSearch (even though lots of you completely ignored my NO GIFTS rule!)

I know there is more, and that the second I hit the “post new journal” button I’ll remember and feel bad because I left someone out. But for now, thanks, thanks, thanks!
Kristie

THE DAY AFTER (AKA; THE MADNESS HAS ENDED)

Day 11 OT

Signs you have had a successful family Christmas celebration:



1. Your children happily and merrily pose for pictures in their new matching Christmas jammies. Smiling, loving, caring, affectionate. Children who feel the peace in their hear ---- Oh, who are we kidding? They were just delirious with joy that there was only twelve hours left until time to open presents.




2. In an attempt to pass the hours until bed-time, the children quietly and peaceably play several rounds of Go-Fish. You didn’t even know they knew HOW to play Go-Fish, but it bought you half an hour of peace and quiet, so it was great in your book.




3. You feel the delight in your heart that your children still believe in the magic of setting out Reindeer Food on Christmas Eve. Well, your youngest two, anyway. You lost the Miracle of Santa with the oldest this year, thanks to two cousins who shall remain nameless.




4. The children enjoy opening presents so much they are able to stop and approve of one another’s bounty with selfless admiration. For about an hour, then the jealousy and bickering starts in because “he got the blue one and that’s the book *I* wanted, etc, etc.”

You know you’ve failed miserably as a Christmas parent when:




1. You come downstairs Christmas morning and catch your oldest sneaking hits on the world’s biggest bong. Oh, no, wait. It’s a marshmallow gun. Cool, huh?


2. Your middle child doesn’t even make it to noon before asking, “Is Santa already watching us for next year, or is today a freebie?”


3. Not 24 hours after the beauty of the holiday has ended, you are already a screaming lunatic, threatening to take everything they got and throw it in the trash if they won’t pick up ONE DAMN THING RIGHT NOW!!!!


Ahhhhhhh. Only 364 days until we get to do it all again. :)

Hope yours was jolly, as well,

Kristie
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QUOTE OF THE DAY: In an attempt to expose my children to a little bit of cinematic culture, I bought Brayden a copy of “The Sound of Music” as a gift this year. She and I were watching it this morning while Kellen and Kendrie played in the other room. Suddenly, the gazebo scene with Lisle and Rolph comes on, and the actors are singing, “I am sixteen, going on seventeen……” and my younger two came running in the room, hollering, “The Pacifier, The Pacifier! Hey, that song is from The Pacifier!” Vin Diesel v. Julie Andrews???? Oh well, so much for culture.

Christmas Letters, 2005

Merry Christmas, 2005

Well, it’s that time of year again --- wrapping gifts, baking cookies, singing carols with our angelic-voiced children, sipping hot cocoa by a roaring fire while my family harmoniously watches “A Christmas Story” together, tucked under a warm flannel blanket --- and obviously, lying and fabricating things for our annual Christmas letter, so that we sound like a happy and functional family. :)

This has been a year of ups and downs for the Escoe family: Blaine and I finally traveled to Seattle in March for his major reconstructive surgery (two YEARS after he was originally diagnosed) UP; Blaine contracted a staph infection after the surgery and had to have six weeks of self-administered IV antibiotics, and two additional surgeries to clean up his leg, DOWN. The Seattle surgery wasn’t a complete success, DOWN; so he traveled to Augusta for corrective surgery this fall, UP. *That* surgery wasn’t successful, either, DOWN; but his doctors reassure us they can fix everything in the spring (Perhaps back out to Seattle we will go --- we’re still hoping for an UP ending to this whole saga!) Kendrie caught a virus that her whacked-out immune system just couldn’t handle and spent two weeks in the hospital this summer, DOWN; all her hair fell out again, DOWN, but we remembered just how cute she is bald, UP! :)

On a sad note, Blaine’s mother Shirley passed away while we were in Seattle … but helping to balance the sad news is the fabulous, excellent report that Kendrie finished her two years and two months of chemotherapy this December the 15th! I have no doubt that Shirley is cheering from above as we head toward that wonderful finish line.

Blaine started a new job this summer …. Doing something for the Air Force; I’m not sure what. Something to do with contracting, or program management, or something. Whatever. He loves it, likes his co-workers and his boss very much, and we put in for yet another extension here in Georgia, which was granted -- we’ll be here until summer of 2008. And with regard to his ongoing, never-ending reconstructive process, well, seriously, I figure it should culminate with the doctors finishing everything, and him finally getting a full set of teeth, about the age of 92, just in time for them to yank them out and give him dentures. I don’t even think he cares anymore, as long as he can work in some hunting and fishing in between surgeries. Funny how “getting rid of his cancer” wound up being the easiest, least-stressful part of this whole process.

I’m doing well; I began another surrogacy journey this year and am currently (depending on when you read this) about 18 weeks pregnant -- just one baby this time. I knew I wanted to do another surrogacy, but waited until Kendrie was close to the end of her treatment so I could give this pregnancy the time and commitment it deserves. I’m happy to say that all is well so far. I also traveled to NYC in August to visit both previous families and their kids, and helped the twins celebrate their 2nd birthday --- I’m so fortunate to be included! Closer to home, I serve on the PTO and volunteer at the kids’ school, but not as much as I did last year. I still haven’t grown a spine or learned to say NO, so now I just avoid making eye contact with as many teachers. Seems to be working for me, so far. I also got a few weekends away for scrapbooking with some of the best girlfriends in the world, so all is good in my neck of the woods.

The kids have been good this year; busy, wonderful, obnoxious, typical kids. Brayden is eight years old and is enjoying 3rd grade. She loves everything about school, except for the days I come to volunteer in her classroom because apparently I am the biggest embarrassment on the planet. She started gymnastics this fall, is in the Ecology Club at school, and loves arts & crafts, “That’s So Raven”, and blue fingernail polish. She is asking for her own phone for Christmas (don’t worry, she’s not getting it!) and I’m worried we are at the top of the very slippery slope of pre-teen-hood, and staring down a giant mountain of hormones and attitude. Good thing she’s so lovable 95 percent of the time, or I’d have to lock her in her room permanently.

Kellen, “Mr. I’m a Boy, All-Boy, unless it involves a spider or a bug within a 50-mile radius, in which case I squeal like a girl at a Jesse McCartney concert” has had a good year. He’s seven now and in the 2nd grade. He still loves recess and lunch best, although he does pretty well in the classroom, too. He played baseball, soccer, and basketball this year and tells us next year he wants to try football and track. The optimistic part of me hopes he will be a well-rounded sportsman; the pessimistic part of me just thinks of all those practices we’ll have to sit through. My only complaint about Kellen is that when he hugs me (thank goodness he’s still willing to hug me in public!) I can rest my chin on the top of his head. Just when did *that* happen, and how can I stop it?

Kendrie, well, where do I start? She is still gender-confused, and wants to legally change her name to either “Nicholas” or “Dash”. Of course, one of those might fit better with the camouflage and Spiderman clothes she insists on wearing every day. She is six, tearing through kindergarten, played t-ball for the first time this past spring, and most recently conquered the tasks of tying her shoes and learning to ride a two-wheeler without training wheels. Now, I realize she might or might not be a little late on those milestones, but considering she spent most of age four lying on the sofa, nauseated from chemo, we’re still pretty stinkin’ proud of her! Now, if we could just get her to knock off the incredibly annoying “baby-talk” that she does all the time, life would be a success.

I realize that lots of people use these annual family update letters to brag and wax nostalgic about all the mah-velous things their fabulous children have done throughout the year. I’d love to go on and on about the brains, beauty and brawn of my three (all true, of course) but it would be remiss of me not to mention that they also seem to have some sort of alternate personality disorder, where all they are capable of doing for long periods of time is fighting, bickering, and arguing with one another. I spend my days half horrified, and half hopeful, that SuperNanny will show up on our doorstep. When I’m not loving them to death, I just want to pinch their little heads off. And that, my friends, is an Honest Christmas Letter. :)

In between the squabbling and skirmishing, we did have some family highlights this year: the Make-A-Wish organization sent us to Disney World for Kendrie’s wish trip, which we enjoyed greatly (when the kids weren’t fighting … do you see a pattern here?) We also spent a long weekend at the beach in Florida with The Lighthouse Family Retreat, and a weekend in Atlanta with Camp Sunshine. We drove to Ohio to visit our friends Kim and Kenny and their four boys this summer, and down to Florida to visit our friends Erin and Joe and their three boys, and take advantage of their easy-beach access. Although we gripe and moan about our kids’ obnoxious behavior, which is even worse when we travel, we sure don’t seem to learn our lesson very well, do we? I guess we’ll keep vacationing and trying until the kids get it right, or until Blaine and I throw our hands up in despair, whichever comes first.

I hope your family had highlights this year, also, in between the daily grind, chores, activities, work, school, and LIFE that seems to speed by so quickly. I give thanks not only for the blessings in our family, but for this time of year when I’m forced to sit back, relax, and ponder the good things. I mean, I HAVE to, if I want to keep pounding out this letter year after year!

Hope yours was fabulous, as well. Lots of love, the Escoes

KENDRIE’S BEEN DEPORTED!!

Day 7 OT

You know, we’ve been so busy this past week with family coming in for Kendrie’s OT celebration, and then our early-Christmas, that it’s hard to believe a week has passed already since Kendrie took her last pills. I guess this time of year flies by for everyone (unless you are one of the poor schmucks stuck in a never-ending line at Wal-Mart for last-minute gifts!) What a great feeling though …. one week down, and assuming she lives to be 104 years old, only 5,096 to go before we can quit worrying!

We drove up to Atlanta yesterday afternoon for her pre-op appointment with the surgeon who was removing her port. It was the same doctor who placed the port in her chest at the time of her diagnosis …. He made the comment while examining her, “Wow, I put in one of the baby-ports… the really small ones. How old was she when I did this?” I replied “She had just turned four” and he said, “I’m surprised it held out through the entire treatment and she didn’t need to get another one. You’ve had some extremely good nursing care if they were able to access this tiny thing the entire time!” Um, ok. Good to know, I guess! (But of course we've known all along that Nurse Mary is da bomb!!)

Since we had to be at Day Surgery at 6am (My word, can you believe people actually get up and go to work at that ungodly hour???) we elected to stay overnight in Atlanta for convenience sake. Luckily, we were able to spend the evening having dinner and visiting with our friends the Connors, whose son Brandon recently received the wonderful news ALL CLEAR FOREVER!!! on his previous neuroblastoma diagnosis. If you’re having trouble finding your miracle this Christmas season, go back in Brandon’s journal and read about his cancer journey --- miraculous, indeed, and a great reminder about the blessings that are out there.

Anyway, despite some grumbling from me {understatement} when the alarm in the hotel room went off at 5am, we made it to Day Surgery just fine and the port-removal went off without a hitch. Kendrie was a good sport beforehand and only cried when they were wheeling her bed down to the operating room and I wasn’t allowed to go with her, but the nurse promised to hold her hand while she was being put to sleep and that seemed to make her feel better. At our clinic, I’ve been able to stay with Kendrie for all her spinal taps; and for her previous bone marrow aspirations, which took place under general anesthesia in an operating room, I was allowed to go back with her until she was put to sleep. I’m not sure why this time was different, and she wasn’t very happy about it, but she did ok.

Afterwards, she was groggy and hard to wake up, and fussy. Extremely fussy. {understatement} She gets really pathetic and whiny after any kind of ‘sleepy’ medicine … I’ll have to remind her of that before she heads off to college, won’t I? Nobody likes a sobbing mess at frat parties, "So remember kids, don’t drink alcohol!" (Think she’ll fall for it?)

I did have a surreal moment when I was pushing her in the stroller from Day Surgery to the parking garage. First, the sun was blinding me and I couldn’t find my sunglasses …. Then I realized I was freezing cold …. Then it hit me; it’s sunny, the air is crisp and clean, and we are NOW officially done with cancer! Sure, we were done the first time after the final spinal, and done the second time after the last clinic visit for IV chemo, and done the third time after the last batch of pills at home ……… and yes, we still have to continue seeing her oncologist for follow-ups for the next few years and watching for any late-term side effects from the chemo, yadda, yadda …. But barring any relapse, God forbid, we are now, this time, finally, at long last, for sure, no more do-overs, DONE! And with the port gone, if she runs a fever, I can just fling Tylenol at her and put her back to bed like I do the other two ---- er, um, I mean, soothingly rub her back and press cool compresses to her brow while humming comforting lullabies under my breath. Just like I do the other two. Yeah, that’s what I mean.

But what a great feeling to know that except for some follow up visits and follow up meds, she is finished. How much nicer it is to be at the end of the treatment road, instead of those frightening days at the beginning. I took a deep breath of that cold air this morning, squinted my eyes against the mid-day sun, and said a prayer of thankfulness for all the blessings she has been given. And for the fact I had a close up parking space and didn’t have to push her very far in the stroller. I guess *that* is the perk of arriving at the hospital at 5:45 am!!

Thanks for thinking of us today.
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Ok, this really bites. I razz my mom and give her a hard time about things, but I have to admit that she has been like a bulldog throughout this entire process when it comes to me and my irrational hatred of anything sticky -- band aids, tegaderm dressings, surgical tape -- I hate it all! She has almost always been there to remind the nurses not to put any of that crap on me, but today, she was defenseless. The doctor not only covered a big spot on my chest with tegaderm dressing before bringing me out of recovery to her … tegaderm, the REALLY sticky kind, but I have to leave it on for four to five days! Something about germs, and keeping it dry ….. stinks, stinks, STINKS! I was NOT happy when I woke up from my surgery and found that on my chest. The IV in my hand, I was ok with, the E.T. light on my finger, I was ok with. I think I've proved through the last two years that I can put up with a lot of junk! But this tape crap has GOT TO GO!!!

TOOTH FAIRY, ANYONE?

Day 5 OT

OK, just a quick update from us ….. I am so happy to report the OT party went well (NO RAIN, NO RAIN, NO RAIN!!!) and I just need a few minutes to go through my photos and organize my thoughts before I update about it (well, considering it’s MY thought process we're talking about, maybe more like half an hour will be necessary!) but things have been crazy-busy-wonderful here.

We are enjoying our OKC cousins visit to the nth degree, and have been trying to see everyone we want to see and do everything we want to do and go everywhere we want to go, all in the five days that we have. Add in the fact we had friends come for the party from Florida, Virginia, and Ohio, and there just aren’t enough hours in the day! But I will get some photos put up on this site in the next day or two.

In the meantime, BIG NEWS ANNOUNCEMENT: Kendrie lost her first tooth last night at Stone Mountain! Right in the middle of “Emily’s Magic Christmas Experience” show; I’m pretty sure the most magical moment of *that* performance was the look of joy on her face when it popped out (helped by the Frisbee-sized lollipop she’d been sucking on for an hour).



Also, please keep her in your thoughts as she and I head to Atlanta for her port-removal surgery on Thursday morning. I *know* that it’s a relatively minor procedure … I *know* it’s done on an outpatient basis and we’ll be home before dinner ….. I *know* kids have this done all the time. But still, when it’s YOUR child’s name and the words “general anesthesia” mentioned in the same conversation, it’s enough to make any mild-mannered parent nervous, let alone a full-fledged paranoid-freak like me! Oh, well, at least we don't have to worry about the breathing tube knocking her tooth out during the surgery --- it's gone! (Although she is eagerly working on the next tooth already!)

OK, well, I’m off to start the turkey and dressing … it might only be the 20th, but we are having Christmas here today …. Seven kids under the age of ten …. Gifts …. Sweets and treats …. the frenzy of present-unwrapping that will take place later today … the mess ... the noise.... the fun.... the frivolity …. Oh, dear, someone just pass me the Tylenol now.

Hope your week is going great,
Kristie

PS Several of you asked for the name of that beautiful song (lullaby?) that was in the site previously. It should come as no surprise to you that it's TSO (yet again!) "A Final Dream" off their Beethoven's Last Night cd. I'm asking you, could I love that group any more???

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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Ha-Ha! I don’t have it anymore!

SWEET DREAMS

Day 3 OT

Last night, we put our daughter to bed (well, to “sleeping bag”, anyway) on the living room floor with her siblings and the one cousin who was brave enough to sleep over. For only the second night out of the past 800 or so, we put her to bed without force-feeding her toxic chemicals. Chemicals that I was more than willing to give her, don’t be mistaken, but chemicals nonetheless. Really, how should you feel when the instructions are for the parents to wear gloves and masks, but “here, it’s ok to put it in applesauce and let your kid eat it!”

But not last night. Last night she drank a glass of chocolate milk and curled up next to her cousin ….. sleeping the innocent sleep that a six-yr old deserves. And Blaine and I went to bed, knowing our biggest concern for the evening was that she not wind up in our bed again, especially after watching The (slightly intimidating for a six-yr old, if I do say so myself, especially if your six-yr old is like ours) Chronicles of Narnia.

I love this song. The first time I heard it, I earmarked it for her first night of sleep without chemo. Knowing that in her dreams last night, the moon is her guide, the stars they have kissed her …………… no more chemo, no more cancer ….. safe on a fairy tale stream. Start a new dream, Kendrie, start a new dream.

A PICTURE IS WORTH A THOUSAND WORDS. ER, I GUESS IN THIS CASE, A THOUSAND CALORIES.

Day 1 OT

While I realize I had been talking and whooping up the ice-cream experience, and letting everyone know how much Kendrie was looking forward to it, I didn’t understand that perhaps I hadn’t explained it properly, until my sister made a comment to me tonight. My sister, her husband, their four boys, my mom, and my dad all drove in from Oklahoma today to join us for Kendrie’s OT celebration. After a chili supper and bowling (our family is nothing if not highbrow!) we headed straight for the Baskin Robbins in town. As we were sitting and eating our ice cream, my sister made the off-hand comment, “I can’t believe Kendrie has gone a year and a half without eating ice cream!”

OK, obviously, that can’t be true. She sprung from *my* loins, after all, and you can tell by looking at the size of those loins that neither me, nor any child of mine, is going a year and a half (shoot, a week and a half!) without eating ice cream. Uh-uh, nope, not gonna happen.

It’s just that dairy products interfered with her nightly chemo meds, so she wasn’t allowed ice cream, milk, or cheese anytime after dinner each night. For a kid who was accustomed to going to bed with a sippy cup of milk when she was diagnosed, that was a jolt. For a kid who was going through chemotherapy treatment with steroids, whose dex cravings usually consisted of string cheese, cheese slices, or mac and cheese (sometimes all together!) it was just plain cruel and unusual punishment. So more correctly, we simply hadn’t been able to go out as a family and have ice cream as an evening treat.

That changed tonight, though! There I was, taking pictures of her eating ice cream like she had never seen the inside of a Baskin Robbins before. Considering our family drove sixteen hours to join us for this monumental ice cream cone, it was fabulous. Considering three of my sister’s kids are lactose-intolerant, it was actually pretty ironic. But they were good sports, and we were so happy to take part, once again, in one of life’s simpler pleasures: "One scoop of chocolate on a cake cone, please." Then, when we got home, despite the fact there was no way Kendrie could still be hungry, she asked for two cheese slices before bed …. just because she *could*, I’m sure. Now, what was that her oncologist said about girls her age gaining weight when they go off treatment? Surely, I can’t imagine what he means!



“Hmmmmm, decisions, decisions. Yep, I think I’ll go with the plain chocolate.”




“Thank you sir, and please don’t assume that lunatic with the camera is my mother. I have no idea who she is or why she is taking photos.”




All our OKC cousins get into the act!





“You know I’m enjoying it when I can’t be bothered to stop and wipe my mouth”




“Ahhhhh, I’ve waited a long time for that creamy, cold taste of delicious dairy delight …. Can we go again tomorrow night?”

Hope you are all having a good night, also.

WE ARE DONE, BABY, WE ARE DONE --- AND IT'S A BEAUTIFUL DAY!!!!

KENDRIE KICKED CANCER!

Final Day of Pills --- Starting Tomorrow, No Mo Chemo!!!



Photo taken December 15th, 2005; LAST DAY OF CHEMO!!!!

Diagnosed with ALL in October, 2003, one month after her 4th birthday, Kendrie is a happy, giggly little girl who is a tomboy at heart. She loves playing outside, swimming, riding her bike, building forts, and says when she grows up, she wants to be "a boy". On occasion, though, we catch her playing with dolls (usually GI'Joes), so not all hope is lost yet! :)

Kendrie followed treatment plan CCG 1991, arm D. After twenty-six months of chemotherapy, with relatively little problems or delays, she finished chemo on December 15th, 2005. She will continue to see her oncologist for the next few years for follow ups .... monthly at the beginning, then the visits will begin to stretch out as long as she remains healthy and cancer-free.

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Wow! Exciting, surreal, bizarre, thrilling, stirring, awesome, dreamlike, odd …. There just aren’t enough adjectives to describe how I felt at 8:17 pm tonight, when Kendrie sucked down those final three pills! What an incredible feeling, and I know she was excited, too! Then I started doing the cabbage patch in the kitchen and her only question was, “You’re not going to take a picture of *THAT*, are you?????”

We had a really great day, all around. Yep, it was a beautiful day! Well, the weather here stunk, so it’s not like we celebrated with a picnic or anything, but we did mark the occasion the best way we know how … with a party! I had approached her kindergarten teacher about bringing in cupcakes or cookies or something today, and the teacher told me yes, she’d been thinking of doing a little something for Kendrie, too, but she’d like for it to be a surprise. Her idea was to title the party “Kendrie Kicked Cancer” and have us bring in snacks that start with the “K” sound …. You know those teachers… always thinking, they are. Me? I’d still be searching for a way to make a party educational, but what can I say? She’s a lot smarter than me.

So I agreed to keep it a secret from Kendrie and went out and bought Cupcakes, Cookies, Candy Corn, and Koolaid Jammers. Now, unbeknownst to me, was the fact that the entire party was a surprise that they were also keeping from me! I showed up today to bring my party supplies, only to discover they had sent notes home with the other kids, who had also brought in treats (they had cherry cheesecake, chips, more cookies than you could shake a stick at, more cupcakes, cashews, candy, cantaloupe, kettle corn, candy canes; those kids could have holed up in that room for a week and not run out of food!) They had decorated the door to the room with posters, the kids had all signed a huge congratulations card, and one of the moms made her a quilt that all the kids got to sign…. and they managed to keep it all a secret from Kendrie. The school nurse came down for the party (I could practically see the relief in her eyes that Kendrie won’t be bothering her all the time now -- although she professed that wasn't the case!) and several of the other kids’ parents came in to help as well, so I didn’t have to do a darn thing. Now, that’s my kind of party!!

They kept Kendrie out of the room for a extra minute and when she walked in, all her classmates yelled “Surprise, Kendrie! We love you!” (which made several of them break out in hysterical giggles) and she got to sit in the seat of honor and open her gift. They really went above and beyond what I thought they would do and I couldn’t have appreciated it more.




Kendrie, opening her blanket and seeing all the names on it. I was very impressed with this, especially seeing how I can't even sew on a button.




Kendrie with her long-time companion, Nicholas, aka Koolaid Mustachio’d Man. Today was also Polar Express Day at school, hence the pajamas and slippers.

After school we were busy running to get haircuts (not hers yet, although she’s already asking for one!) and then going to a PTO meeting tonight where the 2nd graders (Kellen’s class) performed. So by the time we got home for the evening, it was already late and time for the final pills! Then, of course, Kendrie wanted to know if she could have ice cream, since she is now “done with cancer.” Sorry, honey, one more night!




"You mean this is it? This is really and truly it?" I didn't have the heart to remind her she'll still have to take her Singulair and Claritin every night ....




"Ugh, Dad, let's just get it over with!"




Sorry, I couldn't help it. This is the face she has made every night since she started Long-Term Maintenance in Aug of 2004. If anyone ever invents yummy-flavored chemo, they'll make a mint.

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Since we started this morning with ONE DAY TO GO, I thought I would share with you some of the special “Ones” that happened to me today:

**One really stupid thing I did: I went grocery shopping this morning and was pushing the cart when I picked something up with a poor grasp and dropped it. When it fell out of my hands, I thought I broke a fingernail (I know, tragedy) and immediately popped that finger in my mouth because it hurt. Ewwwwwwww! I had my hands all over that cart, all over the store, touching Lord only knows what other people had been touching all day, and I stuck my finger in my mouth without any sort of Purell precaution!!! Disgusting! (Trust me, cancer-parents everywhere are cringing at the very thought … guess we know who’ll be sick for Christmas at our house!)

**One bad parenting moment before I even left the house this morning. You would think, after four years of school, hence four years of getting ready for school each morning, my kids would understand that we have a routine at our house. Breakfast, clothes, teeth, hair. It’s not complicated …. four simple steps. Actually, in general they do really well, which is why mornings like today, when we have to leave the house in three minutes and people still aren’t dressed and can’t find a hairbrush and haven’t brushed their teeth or packed their backpack yet and lost their socks and what have you, it just makes me insane. So after talking at breakfast in my “pleasant, happy mom” voice about what a special, heart-warming day this is for our family, I ruined it before 8am by yelling at my kids to “Get your butts in the car NOW--I don’t care if you have to go to school barefoot --- THAT’S YOUR PROBLEM NOT MINE!!!” Ahhhh, joyful family memories.

**One unexpected welling up of tears --- Kendrie has been in class both years with an adorable little boy named Kobi whose dad is one of the custodians/maintenance men at school. He’s a quiet man and probably hasn’t spoken two words to me ever, besides a passing nod and smile each morning. This morning he was working the drop-off car ramp and since it was raining I decided to drive my kids through instead of walking them in like I usually do. (I know, lazy me.) They were taking a while to get out of the car (still looking for that damn sock, I think) and we were sort of backing up traffic. Kobi’s dad walked over to my car and I rolled down the window, fully expecting him to tell me to pull up and quit blocking the lane. Instead, he looked me right in the face and said, “My wife told me today was Kendrie’s last day of treatment and I just want you to know how happy I am for your whole family …. It’s truly a blessing. I’m really, really pleased for her”. What a kind way to start my day, even if it did make me cry!

**One episode of bad timing: Kendrie’s Polar Express Day was today, Kellen’s was yesterday; pajamas to school, and they get on a decorated bus and drink hot chocolate while the vice-principal reads the story … it’s a really cute tradition at their school. On an unrelated note, every year I buy my kids matching Christmas pajamas and I was disappointed that they hadn’t arrived in time for them to wear them to school for Polar Express Day. Plus, I was annoyed that I had to go buy them new pjs to wear, since theirs are all high-waters and while no on calls them "The Escoe Orphans" to their faces, I figured pajamas that actually fit might not be such a bad idea. So, after buying three brand new pair of pajamas on Tuesday, guess what came in the mail THIS AFTERNOON????

**One unexpected surprise: Walking into Kendrie’s classroom and seeing the other parents there …. Especially her boyfriend Nicholas’s mom and dad. After all, since they are her future in-laws, it’s nice they got to be there to help celebrate such a special day.

**One not-so-serious-but-in-a-way-yes prayer request: After being given such a gift, twenty-six months of chemo with relatively little problems, and reaching this end of treatment, I feel a little selfish asking for more ….. but we’ve got lots of kids coming for a party this weekend and I’ve got footballs and hula hoops and horseshoes and a moonwalk waiting … and they are forecasting 47 degrees and rain. Now, I’ll do my Victory March to the Lake in the rain if I have to, but it would be great if we could get a slight break in the weather for just a few hours that day…. Pretty, pretty please???

**One slightly-more-serious prayer request: As exciting as today was, and as grateful as I am to everyone who helped make it so special (that includes all of YOU by sharing this journey with us) I would really prefer that this be the ONLY TIME EVER that she finishes chemo. In other words, I would love more than anything for her never to have to START chemo again. I am perfectly content to settle into finding our new normal, even if it takes awhile.


Again, thank you all so much for following along this past week or two and leaving such touching messages in the guestbook. It’s truly the icing on the cake, or the cherry on the sundae, or some other sort of "finishing touches" metaphor. The countdown is over …. Although I’ll continue to update, probably daily, at least through the holidays. I hope you guys will be able to keep checking in on us as we segue back into a normal life again. Well, as normal as things get around here, anyway. And if you are willing to keep touching base, dog barf and all, then I’m happy to stick around, too. I certainly check enough CB sites myself, and I’m just as happy to keep Kendrie’s site updated, also. But you guys have to promise to tell me if the updates get too painfully boring. We can have a secret code word you can leave in the guestbook ... like "lobotomy" or "comatose". Or, if I forget to use my spell check on a regular basis. Trust me, THAT is worse than boring!!!

Take care,

Tomorrow is the first day of the rest of our lives … blah blah blah, but doesn’t it ring true? :)))))))))))))) (that is one big happy smiley face!)

TWO, TWO, TWO … WE ARE SO CLOSE TO ZERO I CAN HARDLY STAND IT!

2 Days to Go, in case I haven’t made it obvious enough.

Hey, thanks to all of you who offered up your opinion that the journal could actually be publish-worthy after all. I counted, and I think eleven people offered to buy it. If I could talk my mom, my sister, my college roommate, and my husband into buying one, I’d be at an even fifteen! Hey, even Oprah’s Book Club authors had to start somewhere, right?

And especially thanks to all of you who are taking the time this week to sign the guestbook. It means a lot to our whole family (but mainly me, since I am the one who is pathetically, obsessively on this computer all day long) to have those notes and well-wishes for Kendrie and our family. And hearing from all of you during this very special week makes it even better …. So sign if you haven’t, and sign again if you’d like!

Now, we’re down to two. And I’m *thiiiiiiiiisss* close to saving the best for last …. but tonight’s list runs a close second: Kendrie’s Two Biggest and Most Important Supporters Throughout Her Leukemia Journey.




Brayden, thank you. Thank you for doing such an excellent job helping your Dad and me take care of Kendrie. Thank you for bringing her blankets and pillows when she needed to rest, for giving up your spot on the sofa when she was whining that she couldn’t see the tv, and for (usually) being a good sport about letting her have her way when she was being obnoxious. Thank you for not being jealous when she slept in our bed. Thank you for running for the barf bucket when she needed it and for always coming to tell me, no matter where I was at the time (potty, shower, etc.) Thank you for reminding me to give Kendrie her chemo before school and for sticking up for her that time at the park when those girls were being rude and making fun of her for being bald. Thank you, also, for letting me know when you had had enough, which usually meant Kendrie was pushing things a little bit farther than she should have, and thinking she would get away with it. Thank you for understanding that spring when you couldn’t play soccer. Thank you for helping her look for “Elephant” every time she lost him. Thank you for not turning up your nose when I served mac & cheese with dinner seven nights in a row trying to appease Kendrie’s steroid craving. Thank you, even, for that one night when you announced, “Don’t worry, I’ve already given Kendrie her chemo tonight!” Frightening, yes, but heart warming just the same to know you were so vested in her care. I love you, and Daddy loves you. I credit you with a large portion of Kendrie’s well-being and hope you are always proud of the job you did.




Kellen, thank you. Thank you for being such a fun big brother to Kendrie. Thank you for not ignoring her or avoiding her, even though she is younger and smaller and slower and not always able to keep up. Thank you for including her in your games and adventures and rough-housing, even if I yell at you guys all the time to knock it off. Thank you for sharing a bedroom with her and never complaining. Thank you for (sometimes) giving her permission to wear your clothes. Thank you for introducing her to Super Heroes and trading cards. Thank you for the extra attention you gave the dog when your Dad and I just couldn’t find the time. Thank you for being the sort of older brother that Kendrie could look up to. Thank you also for fighting with her and arguing with her so she never forgot she was still part of a normal family, and that there were expectations for her behavior. Thank you for teaching her how to surf Playhouse Disney and helping her work puzzles on the days she didn’t have as much energy. And for the days she did have energy, thank you for being such a cool brother, so she was motivated to get off the sofa and try her hardest to keep up with you. I love you, and Daddy loves you. I credit you with Kendrie’s get-up-and-go and her physical stamina; she was trying so hard to hang out with you that I think sometimes, she forgot how really sick she was. Thank you for that gift, I hope you are always proud of the job you did.

********************************************************

I’ve been updating the journal each evening after Kendrie takes her meds and we count down another day. So even though after Wednesday evening we will be down to ONE DAY TO GO, I will wait to update the journal until Thursday night so I can include pictures of those final few pills being swallowed (I promise not to take a photo of the grimace she makes every single night …. Totally not attractive.) And I’ve already got updates in mind pretty much daily through Christmas. I can’t quite make up my mind about this journal …. Do I end now, at the perfect stopping point, and let our family live Happily Ever After? Honestly, I’d love to keep writing and keep the site as a tribute for those kids who successfully complete treatment without any major problems ….. a "Good News" site, if you will. Heaven knows new parents could use the encouragement.

But honestly, if she’s not on treatment, what on earth would I talk about? I’m sure you don’t want to hear about my kids arguing, or leaving their dirty laundry on the floor, or the dog barfing in the dining room, or any of the other mundane things that happen around our house on a daily basis. (Well, not the dog barfing … thank goodness that’s not a daily basis!)

Hmmmm. We’ll see. I think I’ll keep it going at least until I investigate the possibility of printing the journal …. Otherwise, how else would those eleven people find out where to buy the book?!?


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FUNNY COMMENT BY KENDRIE TODAY: “Mom, I know all my vowels, wanna hear? OK, there’s the I’s, and the nose, and the ears, etc.” It took me a minute to realize she meant EYES, not I’s, and she was talking about senses, not vowels! (OK, maybe that was one of those “you had to be there” things.)

YOU GOTTA HAVE GOALS!!!

Only THREE days of treatment left!!!


Wow, my three-things list almost got changed at the very last second …. about thirty seconds ago, when I started typing this, to be exact. When it comes to the written language, I have three pet peeves: People who don’t know how to spell, people who don’t know how to use proper grammar, and people who type in ALL-CAPS, REALLY IS THERE ANYTHING MORE ANNOYING THAN THAT?????

So imagine my horror this evening when my hand slipped, I hit some bizarre combination of keys, and suddenly my Caps-Lock key was locked in the ON position. I was afraid this entire journal entry would be in ALL CAPS, which would be incredibly aggravating for those of you trying to read it, and incredibly aggravating for me as well, since my sarcasm and cynicism …. Er, I mean, wisdom and thoughtfulness might not come across as clearly without the ability to HIGHLIGHT and EMPHASIZE certain words.

Thank heavens for the delete key, is all I can say, and I was able to delete whatever command (I still haven’t figured out quite exactly what I did) that had it stuck that way. Whew!!! Now, you’ll know if I type in ALL-CAPS IT’S BY CHOICE BECAUSE I WANT TO DRIVE YOU CRAZY AND NOT A MICROSOFT GLITCH AFTER ALL.




"Three Days to Go, Baby!"

So! Back to my original Three Things List:

Three Goals I Have for Off-Treatment;

Short-term, Medium-term, and Long-term.

1. My Short-Term Goals for When Kendrie goes Off-Treatment:

a) That we are able to settle into a quasi-normal routine fairly quickly. No waking up at 3am, hyperventilating because we forgot to give her medicines (for the record, we have never forgotten her evening meds, but I fully expect to have the 3am panic attack sometime in the next week or two!) No undue alarm if she runs a fever or complains of an ache or pain (yeah, right, like we’re going to be able to relax *that* much???) No wondering about her ANC level before sending her to school or going for a playdate, no planning our vacations around clinic visits, no double-checking that I have emla cream in the car, no fear we will run out of her latest steroid-craving, no running to every pharmacy in town to get all her prescriptions filled, no driving to the school in the middle of the day because her stomach is upset and she’s out of zofran, no limiting her dairy intake before bed, no refusing to allow her to touch a turtle or frog for fear of salmonella, etc. NORMAL people live without those sorts of limitations, right? And although I would hardly classify us as "normal", hopefully we can, too. The one exception is my obsession with Purell and antibacterial wipes. I cannot, will not, learn to stop. This habit could not, should not drop.

b) That Kendrie remain cancer-free.

c) That I lose 20 pounds (Ok, not cancer-related, but a goal is a goal, right?)

2. My Medium-Term Goals for When Kendrie goes Off-Treatment:

a) That we somehow find a balance as a family between being proud of all she has gone through, and no longer letting her milk it for all it is worth. Not that I think she necessarily tried to play us too often, but I do know she got away with a lot more than her older siblings did at her age. We overlooked a lot of tantrums and whiny behavior and demands, and blamed them on the side effects of chemo, specifically steroids. We often (probably too often, if I’m being honest) let her have her way, and made her brother and sister give in to her more than was fair. We let her stay up way past her bedtime, often, so she could eat again after her 2-hour medication window. We let her sleep in our bed with us … oh, that one is **SO** going to stop! I'm tired of waking up with her size 12's in my back, or an arm across the bridge of my nose! Please don’t think she is a brat, she’s really not. At least not most of the time. But we need to figure out a way to laud her accomplishment, and her status as a cancer-survivor, and yet reign her back in as a fully-functioning, rule-following member of our family again.

b) That Kendrie remain cancer-free.

c) That I lose 30 pounds.

3. My Long-Term Goals for When Kendrie goes Off-Treatment:

a) I want to figure out some way to make a positive contribution to the world of pediatric cancer. I don’t mean a measly donation to some charity once a year, I mean do something really worthwhile. Like Grainne Owen, or Kristin Connor, who turned their own pediatric cancer experiences into personal missions and are making such a difference! Like the parents who train and participate and raise funds through Light the Night, or Team in Training. Like the parents who start charitable organizations, or support group websites, or in some way dedicate themselves to helping kids in treatment. Like the parent who starts up an environmental watchdog group, or goes back to school to become a nurse or doctor.

So, let’s evaluate. I’m too lazy to run a marathon and too terrified of public speaking to be a corporate fundraiser. And Lord knows I don’t want to go back to college for four more years or try to run my own non-profit organization! If I were being honest, what I’d really like to do is figure out a way to get this journal published and either provide free copies to cancer parents, or actually sell it and donate the proceeds to charity. It would make me happy to think I could give hope to newly diagnosed families, or perhaps provide a laugh, or some insight, to others. But I know nothing about the field of publishing and am pretty sure that literary agents have thousands of manuscripts sent to them, and file them in the circular file, each and every day. And maybe I’m kidding myself that anyone besides my Caringbridge friends would find it interesting, anyway. Many of you have a personal connection to this cancer and/or disability world …. Someone never affected by cancer, especially pediatric cancer, might not be interested or entertained in the least little bit. (sigh) Does this mean I’m going to have to get up off the couch and run a marathon after all???

b) That Kendrie remain cancer free.

c) That I lose 40 poun --- oh, the hell with it. Where do I sign up for a tummy tuck???

So, those are my goals. January 1st is coming up …. What are *your* goals for the New Year?

NO…….DID THEY REALLY JUST SAY THAT???

Photo taken December 2005; Only FOUR days of treatment left!!! "Yeah, I'm on steroids ... you want to make something of it???"


4 Days to GO!

Yep, as luck would have it, and the way the calendar fell, of Kendrie’s last seven days on treatment, five of them are being spent on steroids. (See above photo if you don't understand what that means.) Well, hey, we’ve put up with the steroids and all the fun that they entail for two years now, might as well go out with a bang! Or a whimper. Yes, it’s definitely more of a whimper and a whine. LOTS of whining. Whining and crying. At least she’s consistent.

So, four days to go, and I thought I would share with you the Four Most Clueless Things Said to Me While Kendrie Was On Treatment. I’ve heard about some of the doozies said to other parents and feel fortunate that we seem to have escaped relatively unscathed. That, or I’m just so dense I don’t even know when I’ve been insulted. That is entirely possible. Ironically, one comment was made at the beginning of treatment, one in the middle, and the last two have been made in the last two days. We’ve got four days to go (have I mentioned we’ve only got four days to go?) so maybe someone will zing me yet!

Clueless Comment #1: The day after Kendrie was diagnosed, I walked my other kids into their classrooms to explain, briefly, to their teachers what was going on … that I would be out of town, that their grandma was flying in to take care of them in case the teacher needed anything, please understand our house is in turmoil and try to be sensitive to my older two children, etc. We had just received the leukemia diagnosis the day before and I was a wreck. Truly, a wreck. It was difficult for me to even say the words out loud without crying ….. and when I said to one of the teachers, “I need to let you know, my youngest daughter was diagnosed with leukemia yesterday” and took a breath to try and calm myself, the teacher grabbed my hand, gasped, and said out loud -- in front of Brayden -- “Oh, no, don’t say leukemia. My best friend’s son DIED from leukemia!”

Clueless Comment #2: “Are you having that baby so your sick son over there can have a transplant?” Said to me, by the cashier at Food Lion, this past summer after Kendrie’s hair fell out again. I was offended on so many levels I didn’t even know what to say. First of all, I was fat, not pregnant. My “sick son” is actually a girl, and how dare a total stranger presume she need a transplant and ask such a personal, potentially-upsetting, question??? (Although I do give her kudos for having even a basic knowledge of the transplant process.) I stood there, stunned, then simply replied, “No, that’s not why I’m having this baby”, paid for my groceries, and left, taking my “sick son” with me.

Clueless Comment #3: Said to me yesterday, by Kellen’s coach, when I told him Kellen would be missing the first basketball scrimmage of the season next Sunday afternoon because that is when we are having Kendrie’s off-treatment party. I explained, briefly, that friends and family are coming in from all over and the party has been in the works for months … sorry for the inconvenience, but Kellen will miss the scrimmage. The coach congratulated me (on Kendrie’s behalf) and said he completely understood. Then he said, “But do me a favor and ask Kellen if he’d rather go to the party or the scrimmage. If he wants to come to the scrimmage, I’ll make sure the Team Mom can pick him up and bring him home so he doesn’t have to miss it.” Now, I *think* the guy thought he was being helpful, which is why I classified the comment as “clueless” and not ignorant. But missing the party for the scrimmage? Not an option.

Clueless Comment #4: Said to me this morning, by KELLEN, while he and Kendrie and I were flipping through the Music Choice channels on the TV. (Don’t ask me. Some kids want to watch cartoons, my son wants to listen to Bluegrass.) As we hit each channel/station, Kellen would name off the kind of music (Classic Rock, Contemporary Country, Smooth R&B, etc.) and I would give a little commentary, then we would all give a thumbs up or thumbs down on the song. We got to the channel entitled “Retro-Active Rock” and Kellen asked, “What is retro-active?” I explained, “Well, retro-active means to go back and do something … something that happened in the past. Like, this music goes back and was the music I listened to when I was in school.” Kellen smiled and said, “Wow, it must go Waaaaaaaaayyyyyyyy back!”

OK, so maybe that has nothing to do with cancer, but there’s no better way to start your day than for your son to tell you you’re old. Its even worse when you know he’s right.

So, in case you are the friend or family member of someone recently diagnosed with cancer, and you’re wondering just what exactly is the *right* thing to say …. Here is the Top Four List of the Most Helpful Things People Have Said to Us:

1. “Hi. I just wanted to call and let you know we are thinking of you. How are things going?” (said in a sincere, concerned voice, and not as an opening to tell me about your crummy week instead. Then, if the person feels like giving details, listen. If the person doesn’t feel like talking about it, don’t take it personally.)

2. “I am bringing over dinner one night this week. What night do you need it?” (Most helpful the first few weeks after diagnosis. Don’t ask if you can bring dinner, or offer to bring dinner. Most people feel awkward accepting help. TELL them you are bringing dinner and ask when. They might protest, but believe me, in the beginning, they will appreciate it more than you know.)

3. “Hey, I checked your Caringbridge site and I’m glad/worried to hear things are going well/rough. I’ll keep checking the site for updates; thanks for keeping us posted like that.” (OK, so maybe I’m the only one who got a kick out of knowing people were going to the site …. It’s even better to let people know you visited the site by signing the guestbook.)

4. “Let’s go out. If you want to talk about cancer all night long, that is fine. I promise I’ll put on sunglasses if my eyes start to glaze over and roll back in my head, and you can just keep on talking. But, if you don’t want to talk about it at all, that’s fine too. Just let me know.”

And in case you are sick of reading MY lists and opinions of things to say/not to say, I’d like to share with you an e-mail that was sent to me this past week by an online friend who is a pediatric oncology nurse in Washington. Mindi, thank you so much for sharing a perspective that only someone who has worked in the field like you can possibly know and understand; I appreciate it!

“Thought I would pass on a little bit more perspective and in the end I think I may only be serving to date myself : ) When I started this kids cancer gig some 16 years ago there was:

* There was no Zofran, Kytril, or Anzamet. We told parents "Our goal is for them to sleep through this part of treatment" We had no choice

* There was no Emla and there was no anesthesia for spinal taps of bone marrows, NG tube insertions, foley catheters or most moderately invasive procedures. We held each and every screaming, terrified kid down. I still HATE myself for that!

* There was no Neupogen and most kids died as a result of Neutropenia. "Most" would equal more than 70 percent..... Treatment killed more than 70 percent of kids.

* There were no child life specialists...nurses did everything (still do for the most part) and while we were good at it, we were not that good.

* There was really no outpatient. All procedures, transfusions, and IV chemo required a minimum 7-10 day hospitalization. If your ANC was less than 1000, whether or not there was fever, you were admitted.

* For patients undergoing stem cell transplant (by the way it was called Bone Marrow Transplant, we didn't know how to apherese humans yet) the average length of stay post transplant was 47 days. Today it is 12.

* We did not allow kids with ANC's <500 who may or may not have been on steroids to eat any fresh fruits or veggies, no fast food, no Happy Meals, no Pizza Hut, Domino's, nothing that sounded or tasted good.

* We were so worried about mouth sores that as nurses we were instructed by older MD's (peds MD's mind you) that thumb sucking had to be stopped. Okay the Catholic in me requires I confess...I thought that was bullshit and cheated on a regular basis.

"Kristie my dear sweet and loving mom, we had no clue what the hell we were doing. But we learned. And hundreds of kids, and even more, their parents allowed and encouraged us to learn. I'd like to think their spirits live on in Kendrie and Mary Grace and Jack and precious Catie who is fighting like hell. We have come so far. We will come farther. We are so close.”


So there you go. Four things *not* to say (Kids, do NOT tell your mom she is old!) four things that are helpful to say, and one truly unique perspective. I’m hopeful I can continue with our Top Three, Two, and One Lists, but Steroid-Girl might not give me any more photos. Hmmm, wonder if I can train the dog to hold up one paw?

Hope your weekend was wonderful,

WHEN I GROW UP, I WANT TO BE…………..

Photo taken December 2005; Only FIVE days of treatment left!!! Wahooooooooooo!!


5 Days to GO!

All parents have dreams for their children and what they should be when they grow up …. Doctor, lawyer, ballerina, etc. Sure, Blaine and I would love to raise tri-lingual neurosurgeons who walk on the moon and summit Mount Everest ….. but realistically, as long as they stay out of jail, we’ll be pretty happy.

Our kids, of course, have dreams of their own. Currently, Kellen wants to be a “Spy Agent”, Kendrie wants to be a doctor, and Brayden wants to be (shrug) “I don’t know.”

There are a few limitations placed on Kendrie, however, due to her leukemia diagnosis and subsequent chemo treatment. Blaine and I were discussing the career options that are no longer available to her, and thought we would share them with all of you, The Top Five Careers That Are Off-Limits to Kendrie: (and in a few minutes, the Top Five Surprises at her Final Clinic Visit)

1. Professional Basketball Player. It’s a medical fact that chemo can stunt a child’s overall growth, and there’s very little chance of hanging on the rim for some sweet air time if you’re not much above five feet when you grow up. Sure, we could blame Kendrie’s genetic vertical challenge on her paternal grandmother who only stood 4”11, but it’s much more satisfying to blame the chemo. Either way you look at it, I don’t think the WNBA is in her future.

2. Professional Baseball Player. As many steroids as we’ve pumped into her system these past two years, her drug screen would light up like Barry Bonds disguised as a Christmas tree. No way she’d pass THAT test!

3. Nuclear Radiographic Laboratory Technician. I’m not exactly sure what it is these people do, but considering Kendrie is already at increased risk for secondary cancers, I don’t think working at Three Mile Island is really a good choice for her.

4. Professional Blood Donor. OK, so maybe no-one actually makes a *living* doing this, even the people who donate platelets for money. But since there is (currently) a lifetime ban against Kendrie, or any blood cancer patient, ever donating blood, I don’t see a ten-gallon pin in her future. It’s a shame, too, because they give out great juice and cookies at those places.

5. Crack Addict. Obviously, not the career choice of a proud mom and dad …. But isn’t it good to know that as many times as she has been poked and prodded already, she is statistically less likely to abuse drugs and alcohol later? I mean, hey, who wants to voluntarily jab themselves with a needle when someone else has been doing it for you the past twenty-six months???

And there you have it …. Career paths Kendrie will most likely NOT take!

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I wanted to share with you a few photos from her last clinic visit yesterday. It was such a profound, exciting, emotional day! Final IV Chemo!!!

We started the day by meeting friends for celebratory lunch at the Fuddruckers near the hospital, Mary Grace and her mom and dad, and Katie, one of our wonderful Camp Sunshine counselors (and a twenty-year Ewing’s Sarcoma survivor!!!) Kristin, we’re so sorry you couldn’t make it and hope your pup is doing well!




Then, over to the clinic, where I practically wore a sandwich board strapped around my body and a neon sign glued to my forehead, announcing to any and everyone who would listen that this was her last day of chemo!!! I told the receptionist, the triage nurse, other parents in the waiting room, the medical sales rep who walked by, the parking garage attendant, and the guy who works in the deli downstairs.

Since this was the last time, Kendrie and I discussed beforehand how nice it would be if just once, just this one single time, she could allow the nurse to access her port without sitting in my lap and crying the whole time. She agreed it would be wonderful. In theory. Then she climbed in my lap and started whining.

But once she was accessed, she did agree that she’d like to flush the line herself, since this would be her last chance to do it. (Did I mention this would be the last time her port was accessed????)


"Kendrie, flushing her port before getting chemo"


The nurse drew blood for her counts, then injected her with vincristine …. Then un-accessed her, and viola! It was over!!!


"Look at me!!! No more pokes in my chest! I DID IT!!!"


I had a nice conversation with her oncologist, while he was examining her, about what life entails for us now, and how things change, and things to watch out for. During this conversation, I actually got a few surprises (not coincidentally, to go along with today's list, FIVE surprises!):

Surprise #1. Kendrie has osteoporosis (soft, weak bones.) Not unexpected, this happens to most kids after chemo. The doctor says with a healthy diet and exercise, it should reverse itself over time. But watch out for increased risk of broken bones in the meantime.

Surprise #2. Her taste buds might be permanently altered. Not only has she not voluntarily eaten a green vegetable at any point in the last twenty-six months …. But she might never want to again. Some kids return to a normal diet, some don’t. We’ll have to wait and see.

Surprise #3. Sometimes, chemo can permanently alter a person's metabolism. Two of the chemo drugs she has been getting nightly for the past year and a half, 6MP and Methotrexate, actually serve as a counter-agent to the weight gain caused by the steroids. Dr. B told me it is extremely common, in young girls like Kendrie, for them to experience significant weight gain after treatment is over. His exact words were, “The biggest concern at this point for Kendrie is that she not suffer from biscuit poisoning.” At the extremely confused look on my face, he clarified, “Weight gain.”

Although she is active, if her taste preferences continues to run towards bacon and cheese like it has the past two years, and her metabolism doesn’t kick in soon, she runs the risk of ….. (if I may be un-PC) getting pretty fat. When she was diagnosed, she was in the 50th percentile for both height and weight. Now, she is in the 30th percentile for height and the 80th percentile for weight. So, great. She’s got her grandma’s short genes, **MY** chubby genes, and the chemo all working against her. What career option is she genetically pre-disposed to be? Working as an Oompa-Loompa???

Surprise #4: Because her immune system is still weakened, she will continue to take Bactrim (a prophylactic antibiotic) for the next six moths … I actually already knew that. And she will continue her nightly Singulair and Claritin for at least three months. Although not necessarily at a greater risk for getting sick, if she WERE to get sick with a respiratory infection, bronchitis, sinus problem, etc, she IS at a greater risk for it to turn into something more serious. Fortunately, Kendrie has never been prone to colds or illness (well, except cancer, I guess!) But it is something we’ll need to keep an eye on, especially this upcoming winter season.

Surprise #5: This is the one that shocked me the most. Well, maybe “shocked” is too strong a word, but I was a bit taken aback. I made a comment, sort of half-joking, that I was looking forward to next Thursday, when I could change my grammar from “Kendrie HAS leukemia to Kendrie HAD leukemia. Right? When exactly can I change from HAS to HAD?” and the doctor’s reply was, “Never. She will always have leukemia.” OK, just why the heck did we complete these past two years of chemo, then, if not to get rid of every single cancer cell in her body?????

He explained to me that they never think they got rid of every single cell, but the assumption is that we’ve hit those abnormal cells with enough chemo that whatever leukemia cells are left, will remain dormant for the rest of her life. *IF* they were to re-awaken, hopefully her immune system will be strong enough to recognize that they are abnormal and would shut them back down. *IF* her immune system can’t shut them back down, and they begin to multiply, that is when a relapse would happen, and that kids who are destined to relapse are going to relapse no matter what. He said you could keep a kid on chemo for twenty years, but if they’re going to relapse, there’s nothing you can do about it. A little discouraging, but actually not a huge shock.

He has been an pediatric oncologist for eighteen years and obviously, he knows the vast majority of kids never relapse. The ones who do, almost always relapse in the first two or three years. In his eighteen years, he has had one child relapse after five years and one child relapse after eight. But he said relapses have been known to happen up to twenty years after completing treatment. I said, “But is that a relapse, or a new occurrence of disease?” and he said, “It’s a relapse. Always a relapse.”

The whole conversation was very interesting …. not panic-inducing, but thought-provoking. I always thought the goal of this treatment was to kill all the cancer cells ….. the thought that she still has leukemia cells floating around her body is a little unsettling to me. Not in a hysterical way, but in a disquieting way. If any of you whose children also have ALL have been told differently by your doctors, I’d love to know. I have full faith in her oncologist and if he says it, then I believe it. It just wasn’t what I expected to hear …. and I’m wondering what others have heard.

Anyway!! After our conversation, he told Kendrie to sit tight and he would be right back. He and all the nurses came back a minute later and gave Kendrie a standing ovation, and this balloon, which she carried like it was a fragile gemstone all the way home last night.



She was so happy about that balloon, I don’t think she even cared that she’ll never play pro baseball.

PS. It's a souvenir t-shirt from Gatorland in Florida ... what did you think? That I was letting her walk around with some giant, terrifying, reptilian nightmare on her chest????

JOSE’ EBER WOULD BE **SO** PROUD

6 Days to GO!

Tonight’s journal entry and Top Six List is a blatant cut-n-paste from a previous journal entry --- but really, how can I NOT reminisce about the six most interesting cancer hairdos EVER??? (Hair entries narrated by Kendrie.)
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Stage One -- The Beginning

SEPTEMBER 2003 -- ONE MONTH BEFORE DIAGNOSIS:


Wow, it's hard to remember when I had this much hair! What I DO remember is fussing every time Mom tried to brush it!!


But Mom always said she thought I looked like the Little Dutch Boy. (((Mom wonders if I heard her saying this, and that's when the gender-confusion began???)))

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Stage Two -- Going, going ......

NOVEMBER 2003 -- ONE MONTH AFTER DIANGOSIS


Oh, geez, the hair is really starting to come out now -- see how thin it's getting? You can actually see my scalp in certain places. (Mom was surprised to find this photo ... she doesn't remember me smiling, let alone laughing, any time before mid-December!)


But hey! If Donald Trump can pull off the comb-over from Hell, I think I should be able to do the same thing!


DECEMBER 2003 -- TWO AND A HALF MONTHS INTO TREATMENT


Yeah, it's getting hard to avoid the truth .... it's definitely on the way out.



But you know what? This Mark Miller guy sings lead for a band called Sawyer Something and *HE* looks pretty cool with his bald head and a microphone -- maybe there's still hope for me with my karaoke Christmas present! I just have to work a little harder to pull off the rock-star thing!

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Stage Three --- GONE!!!

MARCH, 2004 -- SIX MONTHS INTO TREATMENT



Well, it's March, and its DEFINITELY gone now! Here I am, bald as a cue ball, practicing medicine on my poor dolls and stuffed animals (who, by the way, are much better sports about getting stuck and poked and prodded than I am.)



Check it out, though -- this guy was pretty kick-ass, from what my mom tells me about TV shows back in the 70's. And if HE gets credit for being so tough just by chasing bad guys and sucking on a lollipop, shouldn't I get even more credit for kicking so much cancer butt?????



And this guy is well-known for kickin' alien-ass .......



Hey! She kicked ass, too!! These people are all tough just like me! Maybe being bald is a badge of courage in this case! (do you think I'll get in trouble for saying "ass" so many times?)


APRIL 2004 -- SEVEN MONTHS INTO TREATMENT



Well, I guess Dad figured if you can't beat 'em, join 'em. We make a pretty cute team, don't you think?



My dad must know how to handle dirt just like this guy. In fact, sometimes I hear him saying "Who do you think I am, Mr. Clean????" At least that's what he mumbles when he's mopping the kitchen floor.

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Stage Four -- The Rebellious Look

JULY 2004 -- NINE MONTHS INTO TREATMENT



Hmmmm, why does mom start humming "White Wedding" every time she lubes up my head with suntan lotion before we go swimming??? Can anyone tell me????




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Stage Five --- What on Earth????

JULY 2004 -- NINE AND A HALF MONTHS INTO TREATMENT



What the heck??? It's gone again! How did that happen????



I heard a rumor that this guy is pretty noble. Or at least he plays somebody noble on tv. So maybe I'll go for "nobly bold." Ugh, stinks anyway.


AUGUST 2004 -- TEN MONTHS INTO TREATMENT



Well, here I am on the first day of Long-Term Maintenance -- and I'm still in ass-kicking mode! Plus, my mom is hoping I see that girls can be bald and beautiful and tough at the same time, just look at the lady below!



Don't tell mom, but I already knew that. ALL kids that fight cancer are tough and bald and beautiful.

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Stage Six -- Houston, we have growth again

SEPTEMBER 2004 -- ELEVEN MONTHS INTO TREATMENT



You know what I love about this picture of me, and the picture of the girl below me? When *SHE* went out in public like that, people all around the world commented on how bald she was and how on earth could she go out without being embarrassed?? We look almost exactly alike, and when *MY* hair finally got this long, I quit wearing hats --- I thought it was a long, flowing mane at this point!!! Heck, I've even started using shampoo again!



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And One Stage to Grow On ..........

(Narration by Kristie) OK, anyone born after 1975 is probably not going to get the extreme social relevance of the following celebrity hairstyle comparison, but I think my fellow age 30 comrades will grasp the connection immediately, and, dare I say, enjoy a bit of nostalgia at the same time ..........



At the rate Kendrie’s hair is growing, I’m concerned we’re going to be looking like this before too long:








MAY I INTRODUCE CHAKA, FROM THE LAND OF THE LOST!!!










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And notice that we didn't add any of the photos from when her hair fell out a THIRD time this past summer, during long-term maintenance!!! But there you have it, the six stages of hair growth that cracked me up the most.