Prognosis: FAIR

Week #2 of Delayed Intensification #1

Let’s see, when I last exited this journal, we had just begun our journey into pill-taking Hell and couldn’t find our way out with a blowtorch and pith helmet. I’m a little embarrassed to admit that Friday morning I left for a four-day scrapbooking retreat and abandoned Blaine to figure out the best way to get the rest of the steroids in her. We did try gelcaps and I think those will work with more practice, but for the rest of the week, the method that worked best was crushing the pill, mixing it with a teaspoon of applesauce and a heaping teaspoon of sugar. And then Blaine wondered why she was too wound up to go to bed……

We had really psyched ourselves up for the mood swings and huge appetite that normally accompany steroids, and then high-fived ourselves when it didn’t happen. Of course, we forgot that steroids take a few days to clear out of a person's system, and the last few days haven’t exactly been rainbows and bunnies.

Monday night Kendrie and I were in the hotel restaurant, ordering dinner. She insisted on a grilled cheese sandwich, but then wouldn’t eat it because it was “too brown”. She did, however, LOVE the cheese sticks I ordered for an appetizer. However, she proceeded to peel all the breading off and just eat the cheese. So basically I paid $5.69 for four ounces of melted mozzarella. Then she insisted on another helping and knowing that money falls from trees, I ordered it. Naturally, she didn’t want it once it arrived. We left it on the table so the uneaten grilled cheese wouldn’t be so lonely.

Tuesday night we went out to dinner for Brayden’s birthday. While ordering the cheese stick appetizer, I turned to Blaine, in a smug and superior manner, and told him to watch how much Kendrie loves them. Yep, you guessed it, she wouldn’t take a single bite. Then it was “noodle soup” three or four times a day, and this morning she wanted Cheerios. Adamantly. And of course we were out. I offered Rice Crispies and Rice Chex, but were either of those good enough? No! The realization that I wasn’t going to pull a magical, hidden box of Cheerios out from behind my ear was enough to bring on the first, full-fledged tantrum.

There are three basic rules that the entire human race should follow in the pursuit of happiness. Rule one, never stand downwind of someone who spits when they talk. Rule two (for ladies only) never assume the toilet seat is down during the middle of the night. And Rule three, NEVER argue with a child on steroids. Even residual steroids. So being the rule-follower that I am, I told Kendrie to give me five minutes to put on my shoes and brush my hair, then we would go to the grocery store and buy the cereal.

As you might have guessed, during that five-minute span my older daughter’s school called to tell me she had a stomach virus and needed to be brought home. So there I am, in the middle of the school parking lot, with one daughter clutching her abdomen and groaning there was no way she could go to the store, and a VERY persistent four-year old who was NOT giving up on those Cheerios! What’s a caring mom to do? Yep, call her husband and make him cancel his lunch plans to drive all the way across town to buy Cheerios. If someone would invent a drive-through grocery store, they would make a mint.

So, the Cheerios bought us an hour or so of good behavior, then we had the inevitable meltdown. Are you ready for this? Kendrie said I wasn’t attending to business in the bathroom (ie., wiping her bottom) fast enough and that she was missing “Max and Ruby”, heaven forbid! She went into complete hysterics that I wasn’t faster, and wound up lying on the hall floor, crying, screaming, and kicking her legs for twenty minutes. Pointing out to her that actually this tantrum was the reason she was missing “Max and Ruby” seemed kind of useless, so I just sat there for a while. Then I called Blaine and held up the phone so he could enjoy the concert as well. (Poor guy can’t catch a break, even at work!) Finally, when the screams were less frantic and I could hear the huge gulps of air in between, with the quivering sobs starting, I picked her up, carried her to the chair, and rocked with her until she was calm again. I’m hoping the ‘screaming baby’ border I added to the site is only temporary. Although getting to rock and cuddle with her afterwards is almost worth enduring the tantrum.

I’m guessing all the steroids will be out of her system just in time for us to start taking them again next Monday. But we’ve bought mini m&m’s for her to practice pill-swallowing and are hopeful we can at least avoid THAT part of the drama.

I probably could have sat back and laughed at all of this (after all, there are days I want to lay on the hall floor and kick my legs, too) but I had something happen today that made everything more realistic. I was filling out some paperwork for insurance, and had copies of her medical records from the oncologist. Being the proactive parent that I am (ie., nosy) I was reading all of her records. There were no surprises in there until I reached the final page, with the physician’s over-all diagnosis and assessment, and there, on the line following the word “Prognosis”, was FAIR. FAIR? That really caused me to catch my breath because of course I’m still holding on to the 80-85 percent survival rate that we are all quoted.

FAIR. Wow, that really hurts.

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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY:

I wouldn’t have thought it was possible for Mom to douse me with Purell any more than she already does, but when my sister came home from school with some sort of upset stomach, I think my mom was looking to set up an IV line of antibacterial soap on all of us! Geez, mom, relax!

BEST THING ABOUT HAVING CANCER TODAY:

For once, mom was force-feeding someone else in the family medicine instead of me!

“A” list of Emotions (aka) 24 Hours in the Life of a Cancer Mom

So here we are, finished with day 4 of Delayed Intensification. Except for one glaring exception, mentioned later, things are going just fine. Kendrie’s visit on Monday was good; spinal fluid clear (sigh of relief) and home at a reasonable hour. Thanks once again to Nadine M. for bringing us dinner (I know you’ve got to be sick of cooking for us!) Kendrie got sick from the meds for the first time, but didn’t let it slow her down. Today’s visit was ok, too; not as bad as I feared regarding the shots. I warned her ahead of time and she certainly wasn’t happy about it, but we suffered through and five minutes later she was fine again.

I’ve been giving you Kendrie’s perspective in recent journal entries, and thought today that I would give you my emotions, instead, regarding this crazy cancer world. Or maybe the world isn’t crazy, but I am. The jury is still out. Beginning last night, and all beginning with the letter “A”.

Kendrie has taken to falling asleep with Blaine and me in our bed. She loves it, we don’t, but we’re suckers the past few months. Then we just take her back to her bed once she’s asleep. So last night we’re laying there giggling, and I said something along the lines of “I would kick you out of this bed right now except I love you so much” and she said, “Do you love me?” and I laughed and said of course. Then she said, in this teeny tiny voice, “Even though I have leukemia?” and it almost took my breath away. So I said, “of course even though you have leukemia” and then she asked, “Even though I’m bald-headed?” Anguish might be too strong of a word, but it’s the closest “A” word I could come up with to describe the feeling in the pit of my stomach, that my child would even be in the situation of having to wonder these things.

Today began with Kendrie and me preparing to leave for Atlanta. She was complaining that her hands were cold (yes, even in Georgia it gets chilly enough for gloves) and I made the comment that I couldn’t find gloves this year that were small enough for her hands, but that NEXT winter, when we would be driving to Atlanta, her hands might be big enough. It was like a punch in the stomach, “oh my God, we’ll still be doing this a year from now.” And then the Part 2 of the 1-2 Punch, “and we’ll still be doing this the winter after THAT” For just a moment, there was a feeling of Abject Misery, at how much this just sucks. Just as quickly though, that was replaced with feeling Ashamed, thinking that I should count myself lucky we have this treatment to try. Thinking of the parents who have lost children to this disease, and how they would probably give anything to be still taking their kids to treatment.

At the clinic today, Kendrie had to be observed for an hour and a half after the shots, to make sure she didn’t have any reaction to the medication. We were hanging out in the playroom, painting, and all of a sudden I hear the clinic staff break into song, “For he’s a jolly good fellow”. Turns out, one of the kids at the clinic was having his last day of chemo today, and then would be officially OT (off-treatment). It’s a really huge deal, and the staff takes photos, has balloons, etc. I sat there for a minute, feeling in Awe for this boy and his family, and all they must have been through to reach this milestone. Can you even imagine the sense of Accomplishment that must come with that? And I’ll admit I felt A Little Bit Envious, wishing we were at the end of treatment, also.

Kendrie was sort of limping around the clinic, holding her thighs, and another mom looked over and said sympathetically, “did she get her Peg shots today?” I can’t tell you the sense of Affinity I felt to this woman, an Alliance of sorts, as we sat and compared stories. I have a fabulous online support group, and friends and family all over the country who care about us and are wonderful. But this was the first time I had sat down, face to face, with someone who was going through the exact same thing. It was a real pick-me-up when I needed one.

I also felt Affected as she told me about her brother who died from leukemia some 40-odd years ago. Given one shot of vincristine at the time of diagnosis and sent home with a prescription for steroids-- it makes my stomach ache to think how leukemia was a death sentence years ago, and makes me feel such immense Appreciation at how far research and treatment have come, for kids like Kendrie, who now have a fighting chance.

Then, the journey home. Let me say first of all that I feel Amazement for all the people who drive daily in the Atlanta rush hour traffic and haven’t suffered an Aneurysm, because I sure thought I was going to.

There was the feeling of Aggravation, when Kendrie informed me that NONE of the dvd’s I brought to watch in the van were “good”. Apparently, Spirit, Like Mike, and The Lion King all have issues with the heroes being either orphaned, or somehow separated from their families. Kendrie told me they were all “bad” movies for that reason and would only watch the one other movie I brought, The Sandlot. So we watched it. Four. Times. I used to really like that movie, but after the fourth time in a row, even the hysterical swimming pool scene with Squints and Wendy Pfeffercorn failed to amuse me.

Then, the Annoyance that I felt when Kendrie swore that the scrambled eggs she got at IHOP for dinner were manna from Heaven and her life would be over if she didn’t get a second helping. So, being the good mom that I am, I flag down the waitress and order another scrambled egg, only to have Kendrie take one bite and tell me she was full. I don’t think this is a cancer issue as much as it is a 4-yr old issue, but it got on my nerves just the same.

And, what day would be complete without a rousing bout of Anger. It’s probably very un-PC for me to admit that I got angry with my Cancer-kid, and DFACS will most likely show up on my doorstep tomorrow morning for putting this out in public, but tonight’s decadron episode very likely made my “Top 5 All Time Most Irrationally Angry At My Kids”--list. We started our steroid pulse on Monday and I was prepared for the increased appetite and mood swings, neither of which have happened yet. What I was NOT prepared for was her completely balking at taking the damn meds! A wise parent once told me you cannot force a child to eat, sleep, or poop. Let me just add “take steroids” to that list.

It took Blaine and me (are you ready for this?) an HOUR and FORTY-FIVE MINUTES to get one stinking pill down her tonight. Her resistance has gotten worse each dose, but tonight’s was over the top. The first half hour was her pursing her lips, holding her hands over her mouth and shaking her head. She was so wound up, crying and fussing and fighting and thrashing, that when we finally got it down her, she threw it right back up. And the next time. AND THE NEXT. How do you explain to a 4-yr old that skipping a dose is NOT an option? We crushed the pill, we tried the pill whole, we used applesauce, yogurt, pudding and kool-aide. There was bribery, pleading, tears, whining, begging, threatening – all to no avail. Then Blaine tried logic and reasoning – who was he kidding? Finally we got her to swallow a pill and not vomit it back up. Thank goodness, since she was running out of clean pajamas!

So 11:30 pm saw me headed to the grocery store, naturally, in the rain. You have to understand how wound up I am at this point. Angry at Kendrie, angry at Blaine (don’t all Ugly-Parenting moments lead to Ugly-Marital moments as well?) angry at cancer in general. I get to Kroger, and every single buggy is outside, in the rain, soaking wet. I say to the lonely cashier, “don’t you have any dry carts?” and he replies, in a brilliant, thoughtful, the-customer-is-always-right sort of way, “No”. I completely lost it. Huffing and puffing and stomping about, making very loud comments like “isn’t THAT great customer service, that I have to go out in the rain to get my own damn cart!” and then I make a big show of bringing it inside and pushing it over to the restrooms, ripping half an entire roll of paper towels off the wall and drying off my cart, all the while making my displeasure known. Of course, a few minutes later I realize what an Asshole I’ve been and hide for a while in the produce section behind a display of oranges, hoping that particular cashier will be off-duty soon and someone else will check me out. But alas, I had to show my face again. So Midnight-Cashier-Man at the Kroger on Watson Blvd, if you are by some chance reading this, my most sincere Apology.

Ah, what a day I’ve had. But you know? I actually feel better getting it all off my chest .... so thanks!

Hope you all have a wonderful holiday weekend, and Happy Valentines Day! Love, Kristie
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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Well, it’s a tossup. Five hours in the van, plus I had two strange women coming at my legs with needles which wasn’t much fun, and two insane parents force-feeding me medication until I threw up all evening. Take your pick, they all pretty much sucked. (can I say sucked?)

BEST THING ABOUT HAVING CANCER TODAY: Not much.

Looking at Delayed Intensification

Turning sixteen is a rite of passage in America, at least for those of us who are able to get our drivers licenses and start driving. I think my mom was just sick and tired of hauling me to all my extra-curricular activities, but she was so excited for me to get my license she let me skip first period and drove me there herself. And just as significant as the license, is the “FIRST CAR”. A lucky few are given cars as gifts, many “inherit” their parents’ cars, and some of us buy our own. I was in the third category and had definite ideas about the “ride” I wanted. Unfortunately I also had a budget of only $500 hard-earned babysitting dollars, so the car of which I dreamed, and the car which I got, were two totally different things. I dreamed of a classic Mustang, or maybe a little red sports car; stylish, smooth riding, and the envy of many.

What I got was a 1973 green Maverick with tan shag carpeting and more than its share of dents and dings. No air conditioning, no heat, and no power anything. Pleather seats, that were freezing cold in the winter (no heat) and that would melt the flesh off the backs of your thighs in the summer (no a/c). One winter morning I drove my sister to the orthodontist and fresh out of the shower, her hair froze. This is the same sister who would ask for a ride to school then demand that I park a block away so no one would see her. She nicknamed the car “Speedy” and it stuck. The first time I drove to my boyfriend’s house to take him somewhere, he insisted on wearing his football helmet while he rode in the passenger seat. Whether that was a commentary on my newly acquired driving skills or the car, I don’t know, but it was pretty funny (after I pretended to be annoyed, of course.)

Obviously, when it came to Speedy, there was a lot to be desired in the luxury and amenity department. But you know what? That little car got me where I needed to go. Maybe it wasn’t the smoothest ride in town, or the most beautiful, but with only an occasional battery jump needed, I always made it to my destination. Now, hold on just a minute through the following medical information, and I’m going to segue into an analogy so brilliant, it will be the water-cooler talk of the nation this Monday. (ok, maybe not *that* brilliant, but it’s something new to discuss besides the tiresome Janet Jackson breast-baring episode.)

Kendrie begins her Delayed Intensification phase on Monday, emphasis on “intense”. Its eight weeks of treatment with repeats of some of the earlier drugs, and also some new drugs. Most excitedly, steroids again! Yippee! (I hope the Kraft Mac & Cheese workers are ready to put in their overtime, getting all those little blue boxes delivered to our house.) She’ll begin on Monday, with another spinal tap, plus a bunch of new IV medicines, and the Dex (can’t forget the DEX!) then we go back up to Atlanta on Wednesday for her to receive two chemo S-H-O-T-S (shhhhhh! I don’t even want her to hear me type it out on the keyboard!) There will be oral drugs, IV drugs, drugs in her spinal fluid; heck, *I* even get to give her shots this time around, does the fun never end???

DI is a pretty harsh phase and it’s fairly common for kids to have increased side effects from all these meds. Any hair that has started growing back usually falls out again, kids can feel crappy and achy from the steroids, can have reactions to the shots, fevers, and often suffer low blood counts – which puts them at greater risk for infections and the need for blood and/or platelet transfusions. Of course we’re hoping Kendrie does as well this phase as she has so far, but also trying to prepare ourselves for the possibility of a rough couple of weeks ahead.

(Here comes my brilliant analogy)

You know what’s important, though? The destination, not the ride. Our final goal is a town called “Curesville” and if it takes riding in a beat up 1973 Maverick called “Delayed Intensification” to get us there, so be it. Sure, I’d prefer our ride through childhood be smooth and easy, but for now, it’s not. So, we’ll put up with a few dents and dings along the way, strap on our football helmets, try to avoid the potholes as best we can, and manage our way through the next eight weeks. As long as we arrive, that’s all we care about.

(So that’s the analogy. I’ll concede it wasn’t "brilliant", and settle for “clever”. OK, let’s be honest, if you’re even still reading at this point, then I’m thrilled!)

Thanks so much to Lisa J. of Lorton, VA, the latest person to make her way through the CB List of 100! Those messages cheer up a lot of people! And thanks also to Julie H, of Annandale, VA, my good friend and fellow Survivor addict, for going this week and donating blood. It makes such a huge difference!

Thoughts and prayers going out to the families of Conor Ford and Alex Haigler. These brave boys’ fights touched my heart and this past week it broke a little for each of their families.

Thanks for checking in on Kendrie’s website and thanks especially for signing the guestbook. She gets a real kick out of sitting in my lap and having me read the messages to her, so thanks for taking the time, as often as you’d like!
Best wishes, Kristie

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KENDRIE’S PERSPECTIVE:

TOP FIVE WORST THINGS ABOUT INTERIM MAINTENANCE:

1. Doses of oral medication to date: 243
2. Spinal taps to date: 8
3. IV Chemo to date: 10
4. Shots to date: 2
5. Bone marrow aspirations to date: 5

TOP FIVE BEST THINGS ABOUT INTERIM MAINTENANCE:

1. Blood counts stayed high!
2. Finally lost all the weight I gained from the steroids at the beginning!
3. No fevers or infections or ER visits the entire phase!
4. I felt good enough to run around like a hooligan the entire time!
5. I AM STILL IN REMISSION!

First Interim Maintenance Phase; week #8 of 8

OK, I am making absolutely no promises that any part of this journal entry will make sense because I’m typing it at 2 am (all you die-hard CB surfers will empathize) after watching the Super Bowl and All Star Survivor premiere. Needless to say, I'm pretty hopped up on Diet Dr. Pepper and cocktail meatballs. I’m going on record now as stating I want either Rupert or Rudy to win Survivor. (although the previews from next week have me a little concerned about Rudy’s physical health!) A funny aside: before the Super Bowl, Beyonce sang the national anthem. I’m not real familiar with her music (I’m too old to be "in the know" regarding current music; give me a good 80’s station any day!) but I do know she’s a Grammy winner/nominee and a very famous, popular singer. After she finished the anthem, Brayden, my soon-to-be seven year old, turned to me and said, “Wow, mom, she should be on American Idol!” Do you think that’s a sign I watch too much reality tv???

Anyway, I have the results from my 100-CB site challenge, and am happy to know that so many of you finished signing all the guestbooks! I know many more people were making the rounds … whether you signed all 100, or even just one, thank you so much for making a difference! Following is the list of people who let me know they completed all 100! (if you completed it, be sure to tell me so I can give you props!)

Jennifer C. from Eugene, OR

Wendy W. from Winder, GA

Caleb's mom Debbie L. from Dickson, TN

Fisher's mom Carolyn C. from Chesapeake, VA

Heather M from Mississauga, ON, Canada

Tracy M. from Windsor, ON, Canada

I also received quiz answers from Tiffany B. of Grand Prairie, TX and Jennifer C. from Eugene, OR, but TEAM CANADA answered the most quiz answers correctly! Congratulations to TEAM CANADA members; Tracey H. from Calgary; Heather M. from Mississauga, and Terry J. aka Big Daddy to Julianna Banana from Manitoba. (just reading all those Canadian town names gives me the urge to strap on some ice skates and pick up a hockey stick! Unfortunately, the last time we went ice skating, my husband-to-be broke my bridesmaid’s ankle, so maybe I’ll stick to something more up my athletic alley --- like needlepoint.)

So, Fisher, Caleb and Julianna, be on the lookout from Caring Bridge for a notice regarding the donations I will be making in your honor. I received a great amount of positive feedback from so many about the challenge, and I hope all of you who took the time to participate, even if you couldn’t get through them all, enjoyed meeting so many wonderful kids. (and a few grown ups, too!)

If you finished the challenge and have any nerve endings still left in your fingers, here is a great link with dozens (hundreds!) of sites you can visit: Share The Love Just go to the site and click on any of the links; kids, angels, needs tlc, etc. You really have the power to brighten up someone's day in just a minute or two!

OK, quick correction: It was our friend LISA who rolled up her sleeve and donated blood, then sent Kendrie the t-shirt in the picture directly above. I gave credit to Gary (Lisa’s husband) but he is too busy packing travel-sized toiletries in his rollaway luggage for the all-expense paid vacation Uncle Sam is sending him on, to an undisclosed location (that rhymes with Hi-Rack) to be able to donate himself for a while. So thank you, LISA! And Gary, our friend, be safe.

Also, see in that same picture the cool tattoos on Kendrie’s hands? They were sent in a care package by a group called SuperSibs! that honors and supports the brothers and sisters of children diagnosed with cancer. In our house, of course, that would be Brayden and Kellen. They have been pretty good sports about all the extra attention Kendrie has gotten and they realize that the majority of cards that came in the mail when she was first diagnosed were naturally for her. But I wanted them to have something special, too, so I signed them up with SuperSibs! So the other day their introductory packets arrive, with letters, ribbons, tattoos, certificates, etc. and can you guess what happened? I made such a big deal out of how special this was, just for them, because they are important, too, blah blah blah. Then, I took Brayden to get her haircut and while we were gone, Blaine (aka Man of the House Who Should Really Check With Woman of the House More Often) gave the tattoos to Kendrie to put on! Brayden gets back from her haircut and is like, “why does Kendrie have my tattoo on? I thought that was something special just for ME, and NOT for her??? It’s not fair!!! Why does she get everything???” and Blaine is looking at me like, “what? What did I do?” (sigh)

Thanks for checking the site, and especially thanks for signing the guestbook. I hope you all have a great week!
Take care, Kristie

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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: We went to the circus today, and my mom kept pulling out the Purell, every five seconds I’m telling you, and then wouldn’t let me finish my cotton candy after I dropped it on the floor. I guess the 10-second rule doesn’t apply if you have leukemia!

BEST PART ABOUT HAVING CANCER TODAY: It was cold in the big coliseum place where they had the circus, but I already had on my Kim Possible stocking hat that my over-protective mom made me wear. (Don’t tell her, but I was glad I had it on ‘cause otherwise my little bald head would have been cold!)

SUPERMAN; SUPERDORK!

First of all, I have a few thank-you’s to toss around. One, to all the parents (and a few spouses, too) who let me add their Caring Bridge sites to our List of 100. Also, to the many wonderful people who took time to visit and sign guestbooks. I quickly came to realize that visiting all 100 sites was a teensy bit time consuming, to say the least. Attesting to this are my messy house, a mountain of dirty laundry, and the fact I fed my family Froot Loops for dinner last night. BUT! I made it to all 100 sites and signed all the guestbooks! (with a few exceptions; those non-CB sites that didn’t have guestbooks)

A couple of people have asked that I leave the list up a bit longer to give them more time to visit. No problem! I’ll leave the quiz up as well. Regarding the quiz answers, I have gotten a few private e-mails with “Answer Key” in the subject line, which I at first thought were people sending me their quiz answers. I soon realized they were actually spam because a) they looked like spam when I opened them, and b) they were quickly followed, from the same e-mail addresses, with lovely advertisements regarding the always-exciting male genitalia. So! If you want to send me the answers to the quiz, please put “CB” in the subject line so I don’t accidentally hyperlink myself to a Paris Hilton video. No offense to Paris, but there's a time and a place for everything. This just isn't it.

Remember, you have 24 hours more to finish up your 100, or get the quiz right, and I’ll make a donation to Caring Bridge in your name --- just let me know!

I’ve changed the front photo to one taken this weekend of Kendrie, in her new t-shirt sent by our dear friends Gary and Lisa D. from Illinois. Although you can’t see it in the picture, the logo on the shirt says “Scott AFB Blood Services”. This was the shirt Gary received for donating blood last week; he then sent the shirt to Kendrie, which I thought was icing on the cake (the cake being that he went down and donated blood in the first place!) Thank you, Gary and Lisa!

In the Put Up or Shut Up category, I also donated blood on Friday, and would like to encourage the rest of you to donate as soon as you can. I’ve heard some amazingly LAME excuses for why people can’t/won’t/don’t donate in the past few weeks. Whatever. I had a six-year window where four pregnancies and three tattoos threw me out of the running as well, but I’m back in the game now, every 56 days. Thanks to the rest of you who have taken the time, and gone to the effort. It means more than you can know!

Kendrie’s appointment on Friday went great. Blaine took her for the first time by himself (although did I accomplish anything productive that day by myself besides donating blood? No!) He was impressed, and said she handled all the chemo like a pro. In fact, while Nurse Mary was injecting her iv meds, Kendrie overheard the dramatic mud-pit scene from Homeward Bound on the tv in the playroom (you know, where Shadow falls in the mud pit and Chance and Sassy are begging him to get up and he falls back down…”I’m just too old” and then Chance jumps down there and says, “You got me this far, now I’m taking you the rest of the way; I WON’T let you give up!” …. Ah, I’m getting all goose-bumpy just thinking about it) ps. Can you tell we’ve watched Homeward Bound about a BILLION times in the past three months??? Anyway, Kendrie heard the movie and took off down the hall to see her favorite scene, never mind that she was accessed and receiving an IV push at the same time. Blaine said Mary just ran after her (what choice did she really have?) and finished up the meds in the playroom. Her counts were great, and we now have a two-week wait before her next visit, which will be the start of her Delayed Intensification Phase (boring medical details to follow in my next journal entry.)

So, one last silly story before I sign off for the evening. Tonight, the kids decided they wanted to put on a “show” for Blaine and me. Around our house, a “show” usually consists of the kids spending half an hour getting their costumes on and practicing in their bedroom (ah. Peace!) and then they stand in the living room and whisper to one another “what am I supposed to say?” and “I can’t remember what to do” all the while Blaine and I sit back, looking entertained and fascinated by their inherent dramatic acting skills. Tonight’s show seemed to be (I’m still not sure, but this was the gist of it) a heroine (Brayden) dressed in a red silk ball gown (looking suspiciously like her Halloween costume) trapped in a burning building, and two heroes (Kendrie and Kellen, blatantly using their Superman Halloween costumes, as well) who were supposed to (I think, this is where it gets a little confusing) fly around the room screaming at the top of their lungs before rescuing afore-mentioned heroine. Rescuing seemed to consist of pulling her out of the “building” (made of air) and then running around screaming some more. But half-way through, apparently Hero #2 (Kellen) forgot his lines and was just sort of running around squealing. In an attempt to prompt this Broadway-wannabe, Blaine said, “Kellen, what would Superman say in this situation?” and Kellen starts yelling at the top of his lungs, “CALL 9-1-1 !! CALL 9-1-1 !!!”

Oh my gosh. Let’s hope I’m never trapped in a burning building in need of a superhero.

Thanks for stopping by our website, and especially thank you for stopping by the other CB sites as well! Take care, Kristie
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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Bactrim on the weeknds. Ick. Need I say more?

BEST THING ABOUT HAVING CANCER TODAY: With my dinosaur dress and matching hat, I was the cutest 4-yr old at church today!

100 Days of Cancer

100 Days of Cancer – how many is that in dog years??

Well, it’s been 100 days exactly since life pulled the rug out from under us and we received Kendrie’s leukemia diagnosis. So far I think we’re hanging in there pretty well, if you pay no attention to the empty, jumbo-sized bottle of Prozac on my nightstand. (Kidding, of course.) I’m not sure what the significance of 100 days actually means, if anything. I know Korean babies get a big celebration when they are 100 days old, but we’re not Korean. That’s where the age-old classic, “Bottles of Beer on the Wall” starts. Hmmmm. Maybe it’s just that I’m one of those obnoxious Americans who loves things divisible by ten and yet still doesn’t understand the metric system, so to my small, simple mind, day 100 should be marked in some fashion.

Since a party doesn’t seem appropriate – who wants to celebrate GETTING cancer after all, and my local party supply store was out of confetti anyway, I thought perhaps a list would be better. (Yes, you know me and my lists. They didn’t call me “Queen of the Post-It Note” at my last job for nothing!) What follows are 100 web sites for 100 kids (and a few grown ups, too) who have also been affected by this disease. Not all of the links are for people battling leukemia, specifically. And a few of the precious children listed have sadly lost their battle.

These are the sites of new friends we have “met” online, people who have helped support us on our journey so far; also some who have been gracious enough to visit Kendrie’s Caring Bridge site and sign her guestbook, then have sent me the links to friends’ sites, etc. Caring Bridge is a web-like community and once you get started, it’s easy to find sites of people that you quickly come to care about. I’m guilty of “surfing” CB sites at 2am, and figure if nothing else, it beats online shopping all night when I’m up and worried about things. I know my credit cards (and Blaine) thank me.

What I want to encourage you to do is visit as many of these websites as possible during the next week. I don’t care what method to madness you choose. Pick three or four random numbers every day and visit the sites that correspond. Visit everyone in your home state, or every place you’ve ever visited, or wished you could visit. Go alphabetically, go geographically, start at the bottom and work your way up --- it really doesn’t matter. What’s important is to go to the sites and sign the guest books. Believe me when I tell you how encouraging the notes are. If you don’t know what to say, a simple “best wishes from (enter home state here)” is fine. If you want, just tell them we sent you and say hi, nothing else required.

I plan to leave this list up for one week, and anyone who manages to visit all 100 sites during the week wins a special prize. And everyone who can complete the quiz at the end will also win a prize. I can practically HEAR you all holding your breath in anticipation!!! -------- Ok, ok, so it’s not really a prize, but I will make a donation to Caring Bridge in you or your child’s name. I’m personally going to visit all 100 sites and sign the guest books. I don’t care how much 2am surfing it takes!!

I’d also like to mention one CB site that I left off the list, that of Marcus, a very special little boy on our list serve who passed away last week. My heart goes out to his mother, and I hope she knows how much the rest of us on the list are thinking about her.

Thanks to all, and best wishes,

Kristie ps. I’d love to think I’m so computer-literate that all the links in this list work perfectly, but come on. It’s ME we’re talking about! So if you find a link that doesn’t work correctly, please let me know and I’ll fix it as quickly as possible. Thanks! Remember, quiz at the end!


1. Holly in NY

2. Madie in GA

3. Dianne in MD

4. Duncan in TX

5. Serena in CA

6. Kody in FL

7. Elijah in IA

8. John in PA

9. Lindsay in IL

10. Colin in WI

11. Adam in TX

12. Tyler in OK

13. Melanie in MI

14. Aidan in WA

15. Cheyenne in TX

16. Stacey in TX

17. Jill in NJ

18. Nicky in OH

19. Bryan in CA

20. Maxie in VA

21. Ashley in TN

22. Wil in MI

23. Julia in MD

24. Lindsey in VA

25. Emily in TN

26. Isaiah in MI

27. Cherry in TX

28. Celeste in PA

29. Katie in Canada

30. Chad in WA

31. Tyson in FL

32. Isaac in WA

33. Jonny in MI

34. Alex in CA

35. Francesca in NY

36. Sammy in TX

37. Maddie in MN

38. Mitch in FL

39. Brandon in MD

40. Ronnie (Gooch) in CT

41. Amanda in PA

42. Fisher in VA

43. Andy in IN

44. Chad in NV

45. Julianna in Canada

46. Spencer in CA

47. McKenzie in WV

48. Houston in TX

49. Andrew in CA

50. Dani in IA

51. Logan in FL

52. Kristen in IL

53. Chris in MD

54. Marina in FL

55. Kevin in VA

56. Gemma in Italy

57. Jake in FL

58. Ashley & Ryan in WI

59. Zachary in FL

60. Aizee in UT

61. Jessie in PA

62. Conor in Canada

63. Noah in TX

64. Cameron in LA

65. Chris in FL

66. David in FL

67. Palmer in GA

68. Jessica in PA

69. Linus in AZ

70. Bobby

71. Abby in OH

72. Craig in TN

73. Tayden in SD

74. Jason in MD

75. Lakota in MN

76. Alex in SC

77. Will in NC

78. Jordan in GA

79. Emma in OH

80. Dustin in TX

81. Katia in FL

82. Leah in VA

83. Chloe in MO

84. Jonathan in MN

85. Carter in IL (patient name: cartercarepage)

86. Joey in PA

87. Noah in IA

88. Caleb in WA

89. Michael in NY

90. Jacob in GA

91. Grant in ID

92. Caleb in TN

93. Joshua in TN

94. Luke in FL

95. Sarah Anne in AL

96. Lindsay in NY

97. Ashley in IL

98. Hannah in CA

99. Maddy in ND

100. Lauren in TN

(and one extra from an Angel named Matthew, to wish everyone luck)

101. Matthew in MO



100 DAY QUIZ (probably favors ALL-parents, since we know one another’s kids better through our list-serve, but everyone should give it a shot!)

1. Who is a Philadelphia Eagles fan?
2. Who has a dog named Shadow, er, Sammy?
3. Whose site recently went over 384,000 hits?
4. Who enjoys dressing up like superheroes and got a scary looking Hulk costume for Christmas?
5. Who has a brick laid in his honor at the Soccer Hall of Fame in NY?
6. Who has been in the ring, with THE ROCK?
7. Who loves collecting fancy pencils and pens?
8. Who lives less than ten miles from my parents? (Ok, so those of you who actually KNOW me have a slight advantage with this one.)
9. Who currently loves Crispix cereal, in a steroid-sort of way?
10. Who is taking a bead stringing/jewelry making class?
11. Who had the fire department show up at his last birthday? (And no, not to put out the fire made by the candles on his cake!)
12. Who is our current Karaoke King?
13. Who recently got her drivers license?
14. Who had fun swimming with the dolphins?
15. Who loves playing soccer in her Tinkerbell costume?
16. Who is a competitive swimmer? (this might be hard if you don't already know, since I think her mom took the photo off her web site)
17. Whose doctor has nicknamed this patient, “Wild Girl”?
18. Who is our biggest Frosty the Snowman fan?
19. Who has a diabetic cat named Lulu?
20. Who is the Navy Blue Angels #1 fan?
21. Who just got a new puppy named Bella?
22. Who just won 3rd place in his Boy Scout Pinewood Derby?
23. Who has the “newest” CB site? (Less than one week old!) (actually, there’s a tie between two people, as best I can figure)
24. Who just recently lost his first tooth?
25. Whose mom should really turn her mind to more productive things?

Warning - boring medical stuff straight ahead, Captain!

Howdy and good evening to all of you! Kendrie and I returned this afternoon from what might have been the smoothest clinic visit yet. It was a pretty darn good day, if I say so myself. We stayed at the hotel overnight in order to arrive bright eyed and bushy tailed (well, if we actually HAD tails, that is) at her 8am appt. Today’s clinic visit included her IV drugs Vincristine and Methotrexate, Zofran orally, plus another dose of Methotrexate in her spine.

***WARNING – Boring medical stuff straight ahead, Captain!*** Several of you (mainly friends of mine of childbearing age) have asked what is the difference between a spinal tap (aka LP; lumbar puncture) like Kendrie receives and the epidural we all beg for during labor. (ok, I admit it, *I* was the one doing the begging!) To explain it, Kendrie lays on her side in a “nose to knees” position. I put a numbing cream on her back an hour beforehand, and she is given “sleepy” meds through her port to help her relax. Not all clinics routinely give this medication, especially to older kids, but I’m so thankful ours does. Next, the doctor sterilizes the area, and then inserts a needle between two vertebrae where CSF (cerebrospinal fluid) is found. The CSF drips out of the hollow needle into a container, and after a small amount is collected, a syringe is attached to the needle and the chemo medication is slowly injected. Then the needle is removed, and the CSF is sent to the lab to see if any cancer cells are present. Kendrie has to lie flat for half an hour afterwards, but they dim the lights and play soothing music and all told, it’s a nice little nap. Some days I wish they had another table for me, too, ha!

So, like I said, it went very well today and since the clinic didn’t call (in a demented “No news is good news” game that we play every time she has a spinal) that means the fluid was clear; no cancer cells present. Her CBC showed her counts are extremely good. In fact, protocol calls for a two week break from chemo after her next visit in ten days, but the nurse practitioner said if Kendrie’s counts remain as high as they are, they might not have her wait the two weeks but move right on to the next phase. Her oncologist sat down with me for a few minutes before the LP and explained (more boring medical stuff ahead!) that some kids like Kendrie seem to tolerate high doses of chemo extremely well (as evidenced by the fact her counts haven’t fallen.) So in her case, it appears fortunate that she was randomly assigned to the harshest arm of treatment for her clinical trial, as a less aggressive arm might not have been enough for her. Of course, it’s also possible we could go back for her next appointment and her counts could be in the toilet and that’s all a moot point, but it’s certainly a good feeling to know that her bone marrow appears to be working just fine, producing the right (good) kinds of cells, and that her immune system isn’t highly compromised right now. I don’t know what the heck we’re doing that’s making all this work so well (besides praying constantly) but we’re sure going to keep doing it! (read between the lines – blatant solicitation for continued prayers from all of you as well!)

So, in a lame attempt to keep you feeling “close” to my goofy kids, I thought I would share with you the funniest thing each of them said to me this week:

Brayden: “Mom! You know the movie ‘Cat in the Hat’?? Did you know they made a BOOK out of it, and we have it in our school library!?!”

Kellen: (we were discussing whether he got to go outside for recess, as the weather has been a little cold and wet here) “yeah, but only the kids with flak jackets got to go”. I had been a little distracted, but suddenly perked up, “Flak jackets? FLAK jackets? What the hell kind of zero tolerance policy is that???” and he gave me this bemused, 5-yr old look and said, “F.A.T. jackets, mom, only the kids with warm, fat jackets got to go.”

Kendrie (having somehow combined all our favorite terms of endearment for one another – doofus, dork, and goofball): Now walks around saying “You’re a DORF!” Unfortunately, I immediately thought of Tim Conway, ie, Dorf on Golf, and made the mistake of bursting out laughing the first time she said it, which of course encouraged her, so now it’s like a Celine Dion song that’s been played into the ground and to be truthful, isn’t so cute and funny anymore but a little annoying and wearisome. (sigh) Do you think she could be dyslexic???

Not so funny thing Kendrie said to me this week: “Do we have to go to the mall and walk again? You’re too slow!” I didn't have the heart to tell her I LET the elderly mall walkers pass me to make them feel better! (ok, not really, but cut me some slack; I'm pushing her in the stroller, as well! OK, ok, I'm just fat and slow, but I'm trying!)

On a more serious note, any of you who have a minute to spare, please stop by the following CB site and offer some words of encouragement to this family. Their daughter Ashley has the same kind of leukemia as Kendrie, but relapsed this past October. Although I cannot even bear to imagine what they are going through, their 21-month old son was also diagnosed with leukemia this past week. I found myself thinking, “There is no way that I could handle that” and then remembered how much I hate people saying that to me, so I shut up. Instead, I’ll concentrate my energy on saying prayers for their whole family. Ashley’s Page

“Ouch! Crap! What are you doing?? Stop it, that HURTS!!” Do you guys know what that sound is? It’s the noise coming from the DEAD HORSE I am beating!!! Several of you have wonderfully let us know (most recently, big thanks to Nadine M!) that you have donated blood, but CNN released a report today that the US Blood Banks are in a critical condition. I am putting a small excerpt of the article below, just to give you an idea and encourage you to donate. Blaine, who has donated regularly for years, received craptastic news when he was told last week that his bout with cancer earlier this year renders him ineligible as a blood donor for FIVE YEARS. Although he was told there has never been a documented case of a person “catching” cancer from a blood donation (and especially in his case where the entire tumor was removed with no chemotherapy or radiation) they said public fear regarding the blood supply means they won’t even take his. It’s a crying shame, to be that desperate for blood and not be able to take from someone willing to give.

So PLEASE, if you are eligible, go donate. Give up an hour of your time and possibly help save someone’s life. I really like the idea another parent on my list serve had --- instead of giving something UP for a New Year's Resolution, resolve instead to simply "give". I was planning on going again to donate (remember last time I tried Kendrie threw up on the floor, ick!) but given the crises regarding the blood supply, I am going to talk to Kendrie’s oncologist first. She and I are the same blood type and I want to make sure I could be available to direct donate to her, first. If he says it’s ok, though, I will be going down later this week to donate. It’s scary to think there simply isn’t enough blood out there. And remember, it's not just kids like Kendrie who need blood. The next car accident victim needing blood could be your son or daughter. Don’t make me beat this poor dead horse anymore.

@@@WASHINGTON (Reuters) -- U.S. blood banks appealed Monday for immediate donations as supplies dwindled throughout the country and some hospitals canceled non-emergency surgeries.

Blood inventories nationwide "have dropped well below a safe and adequate supply," according to a statement from the American Association of Blood Banks, the American Red Cross and America's Blood Centers.

Donations were falling in part due to holiday travel, bad weather in the West and a decline in blood drives, the organizations said. Certain blood types were nearly depleted, forcing some hospitals to postpone or cancel non-emergency surgeries, they said.

"If blood supplies do not immediately increase, patients, accident victims and those whose lives depend on regular transfusions, are at risk for not getting the blood they need," Health and Human Services Secretary Tommy Thompson said in a statement.

A national tracking system showed less than a two-day supply of blood, said Michelle Hudgins, a spokeswoman for the American Red Cross, which collects about half of the nation's blood. Blood banks prefer to have at least a five- to seven-day supply on hand, she said.

Millions of pints of donated blood are used each year to treat surgical patients, organ transplant recipients, accident victims and others. Blood has a shelf life of 42 days, so supplies need to be replenished continually.

Only about 5 percent of eligible Americans actually donate blood.@@@

So please, GO DONATE!!! Really, it's an hour of your time and could make a huge difference!

Thanks so much for stopping by, sign the guestbook, take a quick peek at the photo album (new photos added today!) and have a great week! Much love to all, Kristie ps. Thanks, Michelle T, for dinner tonight, it was so nice to come home to!

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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Yeah, that spinal tap went pretty well, but when I came to, there was a sore spot on my leg and an empty flu shot on the counter --- AGAIN!! IT'S A CONSPIRACY!!!

BEST THING ABOUT HAVING CANCER TODAY: Well, duh, that's a no-brainer. The treasure chest and the Winnie the Pooh puzzle I got afterwards!

"Kids that are bald-headed don't go to school"

Well, thanks to the timing of this cycle of chemotherapy, this week is the first in quite some time that hasn't included a clinic visit --- so what the heck am I supposed to write about? Heaven knows no-one in our family has done anything funny enough, or cute enough, or interesting enough to warrant comment ........... oh, wait. There were a few interesting questions raised by our very own girl-genius (NOT) Kendrie!

Situation #1: We were discussing our trip to Atlanta last week, and getting to see our cousins who live there. Kendrie has a 5-yr old cousin named Shelby and when I mentioned her name, Kendrie said, "Shelby lives in Atlanta?" and I said yes, and Kendrie said, "does she have a port like me, or get needles in her arm?" and I said "Shelby doesn't have a port OR get needles" to which Kendrie replied, (in a "you are so STUPID Mom" tone of voice), "Well, she lives in Atlanta, so she has leukemia like me!" --------I guess when your cancer clinic is in Atlanta and your mom and dad talk about going to Atlanta once a week, you assume everyone who lives there must have cancer, just like you!

Situation #2: We were watching the beginning of the Sugar Bowl and they were showing pictures of all the starting players. Every few players, Kendrie would blurt out, "Hey! He has leukemia just like me!" and finally I said, "Kendrie, what makes you think they all have leukemia?" and she replied (again with the stupid-mother tone, which is getting on my nerves if you want to be honest about it) "Well they're all bald-headed like I am!" Hmmm, if this reasoning does indeed prove true, it's bad news for Grandpa McClung and Grandpa Escoe! And football players everywhere, please reconsider shaving your heads --- you're confusing my daughter!

and finally, Situation #3: Brayden and Kellen return to school tomorrow; their first day back after the holiday break. We were talking about going back to school (my lame attempt to prepare them for the shock of having to actually get up and get ready for school in the morning, as opposed to playing on the computer until lunchtime) and Kellen asked if Kendrie was going back to school tomorrow also. Although Blaine and I had decided to keep her home with me for the rest of this year, we hadn't really talked about it out loud, so I was surprised to hear her explain to him (using a "you're so stupid, Kellen" tone, which hey, at least it wasn't directed at me this time) "no, kids who are bald-headed don't have to go to school" I hope she forgets that idea come time for school next fall, when she's still bald-headed, but IS going!

Thanks to all of you for checking in, and especially for signing the guestbook. We love reading the messages and want to say thanks, especially if you sign often. The more, the better! Happy New Year to all! love, Kristie
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KENDRIE'S 2004 NEW YEARS RESOLUTION: "Well, let's see. I don't need to lose weight, or organize my closet, or throw myself into my career, especially since I don't really have a career (unless you count printing Stanley activity sheets on the computer). Hmmm. Maybe, with the help of my family, friends, doctors and nurses, I'll just concentrate on kicking a little ALL ass!"

Hello, 2004. So far, you suck.

Kendrie had a clinic appointment today and everything went fine. Her counts are starting to drop a little from the chemo drugs, which is expected. They are still high enough at this point that we can continue to get out of the house. She is scheduled for another lumbar puncture in ten days, so we'll watch the counts and see what happens.

I was all set to update about the cute thing that happened today (ok, at least I thought it was cute) --- when Kendrie chose Blaine's camouflage, Elmer-Fudd hunting cap with extended ear flaps to be her "hat of choice" for the clinic visit. It was huge on her head and looked hysterical. Of course, it being a pediatric oncology clinic, they thought it was funny.

Then, right when I sat down to update this journal I got a gut-wrenching reminder that leukemia is not funny. Nothing about this &## disease is funny. An adorable little girl on my support list, Julianna, had a leukemia relapse in her central nervous system this week. Her dad waited until tonight to let the rest of us know .... her family was waiting on the results of her bone marrow test, which thank the Lord, showed no relapse in her bone marrow.

I think I have felt a connection to Julianna and Terry right from the beginning, for a couple of reasons. Julianna is close in age to Kendrie (she's 3), she's unbelievably cute (like I think Kendrie is), Julianna was diagnosed on Kendrie's birthday, they have the same ALL with the same prognosis, and Julianna's Caring Bridge site was the first one I stumbled across that let me know it was ok to poke a little bit of fun at ourselves and this disease. I have been so inspired by their journal that I've put a link to it in Kendrie's journal in the past, encouraging all of you to read it.

Tonight, I'm putting the link here again, so you can visit their site and please sign their guestbook. I speak from experience when I say that even messages from people we don't know can be encouraging. So please take a minute to offer a word or two of support to this brave little girl, as she and her family prepare to kick her fight against leukemia into over-drive.

Julianna Banana's Home Page

thanks, Kristie

Kindness Strikes Again

Howdy, and Merry Belated Christmas to all of you! I hope everyone had a fabulous holiday, filled with good tidings, good cheer, love, happiness, joy, peace............ all those things I was unsuccessfully searching for on Christmas Eve, ha! Our Christmas morning was lots of fun; the kids slept in reasonably late (7am) then we had the hour of gift-opening frenzy, the hour of peace while all toys were opened and closely examined (the hour we parents enjoy best) the hour of losing all the parts to all the games, rendering them useless the first day, and then the hour of fighting over whose toys are whose and refusing to share.

My personal philosophy is that on Christmas Day, kids shouldn't have to share their new toys if they don't want. So I try to give them 24 hours of "ownership" before Kendrie's motto of "finders, sweepers, losers, leapers" takes over and the free for all kicks in.

The biggest hit this year appears to be the standing microphone (with actual working amplifier!) that came with Kellen's new guitar. Kendrie derived great pleasure from yelling into it, at least 3,000 times that day, "Hey! Who ordered the poo-poo platter?" and then collapsing on the floor in a heap of giggles. Running a close second for airplay was the Escoe children's trio-choir, performing (about 2,900 times) the popular holiday classic, "Diarrhea", which their father so tactfully taught them. In case you are sadly unfamiliar with this holiday favorite, here are the lyrics, so you can teach your own children:

"If you're sliding into first, and your shorts are about to burst, diarrhea, diarrhea.
If you're sliding into home, and your shorts are full of foam, diarrhea, diarrhea.
If you're sliding into third, and you lay a juicy turd, diarrhea, diarrhea."

There are even sound effects, in addition to the timeless lyrics, but we won't go into that.

So you can imagine about how my afternoon went, listening to that over and over and over. I had to put my foot down when I discovered them dragging the microphone outside to "give the neighbors a concert." If ever a family were to be evicted by the homeowners association, I'm sure the Diarrhea Classic would be a good enough reason.

I want to say thanks to all the people who signed Kendrie's guestbook after reading about my pathetic Christmas Eve and shared their own humorous sagas with me. I guess it's good to know that those Hallmark moments are just as elusive for others, and it probably makes us more normal! I love when people, despite being faced with a life situation like this, can still laugh at themselves. Check out the websites of some of our new friends, and wish them Happy Holidays as well:

Katie's Page Be sure to read her mom's journal entry dated Dec 15th --- another great edition of the Crap Sandwich Chronicles!

Elijah's Page Wonderful family!

Emma's Page Another wonderful family!

Kody's Story An amazing site, and an amazing kid! (love the tattoo, Kody!)

I mentioned in a previous journal entry about the two special gifts we received this Christmas, the notices from Caring Bridge and the American Red Cross that donations to these two wonderful organizations had been made in Kendrie's name. Another reminder--- that sometimes the most wonderful gift is a gift of yourself--- came today in the mail ---- a notice from Locks of Love that a donation had been made in Kendrie's honor by our friend Katherine B. in San Pedro, California (LA Air Base.)

Locks of Love is a charitable organization that takes donated human hair and provides hair prosthetics for children with long term medical hair loss, free of charge or on a sliding scale. It takes four months, and a dozen donations, to make a single wig. The organization only accepts donations that are 10 inches or more in length, so this was no little thing that Katherine did! If you would like more information about Locks of Love, their web site is www.locksoflove.org. And thank you Katherine, for such a selfless, generous donation!!! See? Kindness strikes again!!!
much love, Kristie
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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: I can't even step outside the house for one second without my mom yelling at me to put a stocking hat on my bald head!

BEST THING ABOUT HAVING CANCER TODAY: My cool new Kim-Possible stocking hat! BooYa-!

"LEUKEMIA IS THE GRINCH THAT STOLE MY CHRISTMAS SPIRIT (or at the very least, spit in my eggnog.)"

CHRISTMAS EVE, 2003

We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.

First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.

We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.

This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???

Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")

Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:

Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"

And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?

I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???

If anyone finds it before morning, please tuck it into my stocking.

Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
Kristie
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.

Christmas Letter 2003

Ho, Ho, Ho, and a MERRY Christmas! The only thing that makes me happier than opening ridiculously expensive Christmas presents (which let's be honest, my husband is in the military so *that* rarely happens, ha!) is opening the cards, letters and pictures that everyone sends during the holidays. As you all know, I am a HUGE fan of the bulk Christmas newsletter and love reading them, and sending them, each year. For those of you we have met online, I thought I would post our family Christmas letter here as a journal entry ..... my version of a virtual holiday letter to all of you!

Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!


ANNUAL FAMILY CHRISTMAS LETTER

December 2003

Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:

2003 WAS NOT A GREAT YEAR FOR OUR FAMILY !!!

I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.

Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:

The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.

Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)

The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.

Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.

I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.

Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.

Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.

Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.

At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.

I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.

Oh, yeah, sometimes I forget that Blaine has cancer, too

Brief update: I feel embarrassed for not posting this earlier, since so many of you were kind enough to worry and wonder, but we did get the news that Blaine's biopsy results were clear (nothing more than scar tissue) as the doctors suspected. Thank goodness, because like someone said, watching my head actually explode wouldn't have been a pretty sight. :) Thanks so much to everyone for caring!

Interim Maintenance Begins

HELLO?? RANDOM HOUSE?? ARE YOU THERE???

Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!

For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!

Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.

Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!

Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)

You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!

For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie
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KENDRIE’S TOP FIVE WORST THINGS ABOUT CONSOLIDATION:

1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.

KENDRIE’S TOP FIVE BEST THINGS ABOUT CONSOLIDATION:

1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???

Pointless thoughts ..... no surprise its the only kind I seem to have lately

Pointless thoughts, reflections, aimless mental ramblings………………

When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.

Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.

Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.

** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”

I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”

** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?

** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????

Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.

“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis

“I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.

“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.

“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.

And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:

“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”

I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!

Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.
MARCUS’S SITE

Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie
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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.

BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!

Consolidation - Day 21

Well, technically, it’s only Day 20, but I’m discovering that in the world of chemotherapy (or at least in our world of chemotherapy) “close” is good enough. The first time or two our clinic visit was bumped a day in either direction I panicked, but now realize going in a day early or late doesn’t seem to matter, and is sometimes unavoidable. It IS, however, very difficult on our wonderful military and scrapbooking friends who keep making plans to bring us dinner on our clinic days, when the days keep changing! (it’s fine with me, though, I’ll take a home cooked meal, especially home cooked by someone else, anytime!)

Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.

We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)

“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)

The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.

At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!

Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.

Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!

BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!

Consolidation - Day 15

THANKS, THE SWEATER EPISODE, AND A DEFINING MOMENT (no, not one of those “Hallmark” ones, either)

Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!

Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:

`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````

So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.

We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.

She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.

Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.

We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”

Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?

I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.

On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.

Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!
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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!

BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!