Sunday, October 31, 2004

A COMPLETE 180 IN 365 ......

Week #12 of LTM

Our three little goblins this Halloween: Brayden, a witch either practicing her come-hither pose, or needing a hip replacement ... Kendrie, the lone Muskateer ... I have no idea WHY people thought she was a boy, do you? And Kellen, who chose to be Zorro because he had the "best sword".
Photo taken 10-30-04

Well, we made it through the Halloween holiday here in Georgia, safe and sound and only a few sugar-induced arguments to show for it. Last night the kids were happy, enjoyable, and loving life. This morning, thanks to the rapid drop in blood sugar, the late night spent socializing with neighbors, and Daylight Savings Time …. My gosh, we’ve got three unpleasant campers on our hands. You’d almost think we had THREE kids on steroids, the way the mood swings and grumpy attitudes have come out in full force. Thank goodness it’s only one night a year, right?

I wanted to show you guys a picture from last year which should help explain why this year was so much more fun.

Last Halloween, Kendrie had been diagnosed only two weeks before and had just gotten out of the hospital. She hadn’t even started losing any hair yet, but all I have to do is look at her face in this picture to remember how confused and distrustful she had become. No smiling for photos, and no interest in anything that was going on around her. What a difference year makes!

Also wanted to share with all of you (who might not have heard of her) that the Book Fairy came to our house last night. Who is the Book Fairy, you ask? (Or, you didn’t ask because you don’t really care, but I’m going to tell you anyway.) She’s the chick who dates Santa Claus on the sly (sorry, Mrs. Claus) and shares an apartment with the Tooth Fairy. Every Halloween, when our kids come in from trick-or-treating, we let them eat candy to their heart’s content. You know the saying …. "Halloween is like a frat party; it’s not a success until somebody pukes." And when they are done eating enough candy to keep Mars Corporation in business, they can choose five pieces to keep for the next day. Then, all the candy and suckers and gum and everything that is left goes back in their buckets to be left on the porch for the Book Fairy. On Halloween night, she flies to everyone’s house and every child who has left their candy for her to eat receives books in their pumpkin!! (I KNOW! Can you believe my kids fell for it again this year????) So Brayden is now the proud owner of a set of Amelia Bedelia books, Kellen is learning about the wonderful friendship of Frog and Toad, and Kendrie received a Brand-New Reader set of Monkey Books. It’s actually a terrific idea that I got from a friend a few years back, as long as your kids believe (or prefer books to candy). Plus, it makes it harder for me to dip into the buckets and snack myself into oblivion, since I make Blaine take the evidence to work with him. I guess the kids still believe ….. first thing they did this morning (at 6am …. Darn daylight savings time!) was run to the porch to see if she came. I know they’re getting smarter, though, because Kendrie’s comment was, “Mom, if the Book Fairy ate all that candy, it must be hard for her to fly!”

Hope your Halloween was wonderful!!!



Well, probably just that on the weekends I have to take my icky Bactrim medicine. Yuck, yuck, yuck. Do you realize that I’ve had leukemia for a little over a year, about 55 weeks, and I take four doses of Bactrim a week. Now, we haven’t covered too much math in Pre-Kindergarten yet, so I can’t be sure ….. hmmm, times four …. Carry the one ….. drop the decimal …. I think that’s around 200 doses! In fact, it’s exactly 220 doses! (Mom said I could cheat with her calculator.) I take one teaspoon at a time, times 220 times (oh, geez, more math) Let’s see, that’s almost three cups of Bactrim, one squirt, squirt, squirt at a time! Y.U.C.K!!!


My mom told me when she went to fill the Bactrim prescription this week, Jerry (that’s our pharmacist. He and my mom are on a first-name basis because she has to go there so much for my medication) told her one suggestion was to let me melt a Hersheys Kiss on my tongue, then squirt in the icky-tasting medicine real quick while my tongue was still coated with chocolate. Hmmmm. I just have a few questions. First of all, where on earth am I going to find a coat to fit my tongue??? That’s just silly. I suppose he’ll want little mittens for my teeth, too? And secondly, why did Jerry wait a whole year to make this suggestion? I am my mother’s daughter, baby, bring on the chocolate!

Friday, October 29, 2004


Week #11 of LTM

Well, here in the “rural” county where we live (only three minutes from the mall, but unable to get pizza delivery, go figure!) Saturday has been decreed as Trick Or Treat Night and all I can say is “Thank Goodness!” If I have to listen to my kids count down the hours, or plan their attack of the neighborhood, fantasize about the buckets of treats they hope to score, or argue about whether the miniature Snickers bars or Tootsie Roll Pops are the better of the candies …. needless to say, I just want Saturday night to get here already! (The fact that I pillage their stock after they go to bed doesn't have anything to do with it, do you think?)

We did have a fun activity this week and I thought I would share some photos with all of you. Our friends Laura, Rob, Lonnie, Melissa and Emily invited us to their annual Pumpkin Carving Party on Monday night. First we painted mini- pumpkins (well, first we **ate** because if you know the Escoe family at all, you know that is the most important part!) and then we used those cool pre-printed designs to carve the bigger pumpkins. I had never used a kit before, which would explain why my carved pumpkins from previous years always look a little lopsided and un-proportioned. Sort of like John Kerry’s head. (Not that I’m endorsing Bush in any way on this upcoming election next Tuesday ….ahem … )

So anyway, we all had a great time and really got into the act. Thanks to Laura, Rob and their kids for hosting and including us in such a fun annual event! We hope to be invited back next year and promise to do a better job cleaning up the back yard before we leave.

Blaine and Brayden have a little bonding experience on their pumpkin. Actually, Brayden is the only kid in our family who yanks out the insides of a pumpkin with glee. Kendrie was willing, but timid, and Kellen is such a girl, refusing to get his hands "icky".

I just love this picture of him .... he almost looks angelic, don't you think? Must be a trick of the lighting.

"What do you mean pumpkins aren't blue? I'm five ... I have a good imagination, and I want my pumpkin to be BLUE!"

All the kids show off the masterpieces at the end of the evening.

See? I told you the tongue disease runs in our family!

Actually, I'm probably lucky my own tongue wasn't hanging out for this photo!

I hope everyone has a fun Halloween (or Harvest Festival, or Fall Party, or Autumn Extravaganza, or whatever PC thing it is you choose to celebrate.) We’ll post pictures from trick-or-treating this weekend …. First of my kids looking cute in their costumes … then of my kids going door-to-door demanding candy in a most neighborly way … then of my kids sacked out on the sofa in a sugar coma, chocolate smeared on their faces, clutching that last roll of Smartees in their grubby little fists, I’m sure.

Thanks for checking in,


Ugh. Tonight was a THURSDAY, which used to mean my mom would yell at us to be quiet while she watched Survivor. Now, since starting long-term maintenance, Thursdays are marked as the night I have to take seven pills before bed. Seven! I don’t care how much my dad crushes it up, that’s a lot of damn applesauce.


Today was Mix-N-Match Clothes Day at school. I know, I know, that doesn’t have anything to do with cancer, but you should have seen how funny some of my classmates looked! And tomorrow, my mom is bringing pumpkin cookies to school, woohoo!

Monday, October 25, 2004


Week #11, LTM Therapy

OK, I freely admit it, I am a Caringbridge junkie. I have an obsessive need to check on “my” kids and will always make time to get a few hours’ worth of CB surfing each day, even if that means my family has to eat fast food, off paper plates, sitting on an un-vacuumed floor, wearing dirty underwear. Sometimes I wonder what I used to do with all my “free” time before I discovered this world out here …. oh, I don’t know … maybe cook and clean house and do laundry? Anyway, I have dozens and dozens of sites I check on randomly, and about twenty that I check on at *least* once a week, and around five or six that I check on every day, fearful of missing a single journal entry.

One of those daily-requirement-sites is an awesome kid named Spencer Rocket, who many of you already know, I’m sure. But for those of you who have never heard of Spencer, or have only been loosely following his story, I have some pretty fabulous news:


What’s my connection to Spencer? Nothing, really, except he’s an adorable little guy who has completely stolen my heart. I met his mom Kerri on my All-Kids online Support Group, and because Spencer is only a year younger than Kendrie, and cute as they come, Kerri and I used to joke that we were going to force the two of them to go to their Sr. Prom together, in 2017. Spencer was diagnosed on Kendrie’s birthday, Sept 2, 2003, with T-cell ALL. T-cell is not as common as B-cell and is generally considered a higher-risk leukemia. Nonetheless, Spencer was doing great until Feb, 2004, when doctors discovered Spencer had relapsed in his central nervous system. And so began their long and incredibly difficult journey.

The doctors had a difficult (and I use that term lightly --- I mean DIFFICULT) time getting Spencer back into remission after the relapse. Once they did, Spencer and his parents, Kerri and Brian, left everything that was familiar in their life and moved cross country, to Duke University Medical Center in North Carolina, where Spencer received an Unrelated Umbilical Cord Blood Transplant on May 5, 2004.

Since transplant, Spencer has done very well, but that doesn’t take away from the cost (both fiscal and emotional) that his family has faced, living in a strange apartment in a strange city, thousands of miles from home, giving up their jobs and home and friends and family and everything that is “home” for six months; watching other transplant families struggle with complications from the procedure, several losing the battle, and worrying all the time about Spencer. I have been asked on occasion why Kendrie is undergoing chemotherapy for leukemia; why don’t her doctors just jump straight to a transplant? The answer is that a transplant is the most extreme form of cancer treatment possible; truly a measure of last resort. That’s not to say some kids don’t do beautifully, and Spencer is certainly an example of that, but it’s not a road *anyone* would elect to go down, given the choice.

I have spent the past eight months praying for Spencer, his parents and his medical staff. (And the chefs at Maggiano’s!) I’ve sent up positive thoughts, meditated, crossed my fingers, held my breath …. I’ve done everything but sacrifice a live chicken in the town square and if I thought for one brief second that would have helped Spencer, I would have braved the wrath of PETA! Thank goodness it wasn’t necessary. Now, I am SO happy to report that Spencer has been cleared to return home to California and finish out his treatment at home. Please, if you have a minute, stop by Spencer’s site and give him and his family a note of congratulations!

Spencer, we have followed your journey closely and couldn’t be happier tonight that you have been allowed to return home, to your familiar house with familiar toys and faces. Kerri and Brian, your dedication to Spencer these past eight months has been such an inspiration to me! Thank you for sharing his story through the Caringbridge journal; it has been entertaining and informative. Relax back at home and get ready --- we’re coming for a visit, if not before, then at least in 2017 in time for the Prom!

Best wishes,


Well, I’m a little disappointed that we don’t get to meet Spencer’s family this week like we had hoped. My mom said they were planning to drive from North Carolina to Florida and we were going to meet them on the way. I was so excited and had been bugging mom to take me to Spencer’s site every day, and then we found out last week that Spencer gets to go straight back home to California, so no visit for us! If mom thinks I’m going on a “Blind” Prom Date, she’s crazy. I don’t care how cute he looks in his pictures!


Ok, who am I kidding? I can’t even hold a grudge, since I’m so happy for Spencer that he gets to finally go home! I can't imagine being gone from my friends and toys and bike for that long, and especially being stuck in an apartment with my parents for six months! I hope the next time he visits the East Coast for a check-up we get to hook up, though!

Friday, October 22, 2004


Week #11 on LTM

Well, after my never-ending journal update on Kendrie’s one-year anniversary date last week, it’s taken me a little while to post another update. I have to say, this might be the longest I’ve gone without updating …. nine whole days …. what does that tell you about me being long-winded? (Please don’t actually answer that.)

I want to thank all of you who posted so many nice messages in the guestbook in the days leading up to the anniversary, and after reading my online saga. Because it helps keeps me sane, I would write this journal in a dark cave, in the corner, never to see the light of day, if I had to. But it’s so much more gratifying to read notes from other people who have experienced the same thing, or who simply want to wish us well, or who will stop long enough to offer a note of encouragement for our family. Sometimes I feel like one of those guys who plays the guitar on the street corner with a hat out in front of him. Only instead of a guitar, I have an online journal. And instead of sitting on a public corner, I sit in my computer room. And instead of hoping people will throw money in the hat, it makes me happy when I hear from people who enjoy our site. And instead of ….. well, when you look at it, actually, I guess it’s nothing like the guy with the guitar.

Since getting over the mental hump that was the one-year anniversary, it honestly hasn’t gotten much press time in my head. We’ve moved on to a normal, busy, hectic life like everyone else on the planet. The big events of this past week included 50’s Day at school --- which was a total hoot. Check out my kids, doing the “Fonzie” thumbs up. Only Kellen looks more like he’s going to a heavy-metal rock concert, than to a sock-hop.

Our whole family went to the fundraiser at the school last night; hula hoop contests, lots of 50’s music and dancing, root beer floats … it was really a lot of fun. Fun enough that Kendrie started crying when we told her it was time to leave. And not “oh, how cute, she’s sad because it’s time to go”-crying, but rather “if you don’t knock it off right now we’re never coming back to another event again!’-kind of crying. Except for that, though, we had a great time. Check out my leather jacket --- I'm afraid it was a little more Michael Jackson'ish than James Dean'ish. And check out the stick-in-the-mud parents in the background who didn't dress up like we did.

Kendrie also had a class field trip to a pumpkin patch, her first ever visit to the dentist’s office, a fundraiser night at the local pizza parlor --- and, that American rite of passage that all elementary school children must endure: Picture Day at school. Since she is in Pre-Kindergarten, this was her first time for Picture Day. She was so excited and picked out her clothes herself. (Tiffany, she wore Logan’s khaki-princess pants!) The funny part came when the photographer’s assistant went down the line and passed out combs to all the children before the photo. Kendrie took the comb, looked at it, then looked at the lady like, “What are you? On crack?” I was literally laughing out loud. (How did I see it, you wonder? Because it appears that until I get a tattoo of the word “NO” stamped on my forehead, I will be one of the Parent Volunteers for every single event they have there. This week alone there was Picture Day, a workbook project in Kellen’s class, field trip to the pumpkin patch, making pizza with the kindergarteners, pre-K picnic, coordinating online photo albums for the yearbook staff, PTO meeting, re-arranging the PTO bulletin board, and because volunteering itself isn’t fulfilling enough, I am also the Parent Volunteer *Coordinator*, which brought about at least three hours on the phone getting volunteers lined up to work the Book Fair. Please, some other stay at home moms tell me that this is your life, too!) (ps For the record, I enjoy spending time at the school …. I just like to gripe about it at the same time!)

So anyway, where was I? Oh yeah, Kendrie’s hair. Her class takes a rest-time after lunch each day and one day this week when I picked her up after school, she actually had a little ridge on the side of her head where her hair was sticking straight up from laying on it. I didn’t know whether to laugh or cry! She has started brushing it after her bath each night (completely unnecessary but totally adorable) and asking me to spritz her with no-tangle spray each morning (equally unnecessary, but hey, if it makes her happy.)

Another fun thing this week was getting a chance to finally meet, in person, Jacob and his family. Jacob is an adorable little boy whose dad is also stationed at Robins AFB here in Georgia. He just hit his one-year off-treatment milestone for rhabdomyosarcoma and is doing great --- clean scans this month! His mom Jenny and I have been e-mailing, and have even met in person once, but this was our first chance to get the husbands and kids all together. This family is another one of those silver linings --- warm, wonderful people placed in our path who we would never have met otherwise. We look forward to spending more time with all of them!

One last thing I want to mention before I sign off for tonight is a program, recently started in Atlanta, but which will hopefully be picked up nation-wide. It’s a fundraiser for pediatric cancer research with great potential --- we just need to get the word out! Below is the “blurb” with a link and phone number for more information. If you can, please take part in the program, and/or spread the news, either by telling friends, or putting the information on your own caringbridge site.


Thanks, and have a great night!
Love, Kristie



Just about the time I *forget* that I have cancer, something happens to remind my mom that I am still a little more suh-sep-table to germs and things. Like my classroom friend Meredith going home from school on Wednesday, then her mom called to tell us she had strep throat! I felt bad for Meredith, until my mom starting hosing me down with Purell …. Then I felt bad for me!


Well, this doesn’t really have anything to do with cancer, but my dad took the whole day off from work today just to come to the school and have lunch with me and Kellen and Brayden! Mom obviously didn’t understand that he took the day off strictly for our lunch date because she had him busy painting the halls in the house, but he managed to throw off the shackles long enough to come chow down on some pizza and cookies from the lunchroom. Then, I overheard him call her on the cell phone and say something about “it’s a madhouse in here with all these kids!” and I’m pretty sure she said something back like, “yeah, well, welcome to my world and try volunteering down there all the time” and then who knows what else they said. Grown ups are weird.

Wednesday, October 13, 2004


(or) The one-year anniversary of the beginning of the suckfest (It’s not a roller coaster; it’s more like a see-saw. On the playground in Hades.)


This date, one year ago, found us on day #3 in the Macon Children’s Hospital; diagnosis: anemia (question mark?). Kendrie, despite having several transfusions on Saturday and Sunday, wasn’t bouncing back the way the doctors thought she should. So, although it was Columbus Day, a holiday, they were scheduling her for a bone marrow aspiration (is it ever really a holiday in a hospital?) The specialist had been called in and was the one requesting the aspiration ….. “to find out what is going on with her bone marrow.”

I feel like such an idiot, when I think back and realize how clueless we were. Although in my heart I was worried it might be something serious, the word “cancer” had not been mentioned aloud, so I wasn’t letting it infiltrate my head, either. What was it, exactly, that I thought they would find out???? The days in PICU had passed in a sort of surreal denial, as we sat back and waited for the magical, easy diagnosis. Surely they would send us home with some band-aids and a bottle of multi-vitamins. My child was loved, immunized, breastfed, and well taken care of. How could there be anything wrong with her?

In hindsight, I assume the doctor must have known what was going on, or at the very least suspected it, but he never said it in front of us. Is that better, or worse? Who knows, maybe he was hoping to protect us. They took her for the bone marrow aspiration, and were in the room much, much longer than they told us they would be. When he finally came out, he sat down and explained that her marrow was packed so tightly that despite sticking her in three separate locations, they simply couldn’t draw out enough marrow to test, so they had to resort to a bone biopsy … a test where they actually shave off a piece of her hip bone to test it.

I remember thinking “oh, well, that’s ok, right?”

Knowing what I know now, I believe that sometimes, ignorance is bliss. Otherwise, I would have been terrified, realizing that packed bone marrow is an indication of a serious problem. I would have been upset that she was stuck so many times, and livid that she had a biopsy done without general anesthesia. Instead, when the doctor told me he would have the results in a couple of hours, I cheerfully said ok, and tag-teamed with Blaine, leaving him with her in the hospital, while I headed home for a shower. Good heavens, I was naïve. How could I have been that naïve?

Blaine called later and told me the doctor wanted me there, so he could discuss the results with us in person. Uh oh, red flag number one. I think deep down I was starting to suspect at this point. I remember driving back to the hospital, but not rushing. Delaying the inevitable, perhaps? When I arrived, the nurse called the doctor and he asked us both to step into a private room. We had all three kids there, so Blaine stayed with them in Kendrie’s room while I followed the doctor next door. The nurse followed me and shut the door behind us. Oh God, this must be serious.

He was kind; he was gentle. Put his heavy hand on my shoulder and said, “I’m so sorry. It’s leukemia.” I had a sort of slow-motion crumbling on the inside. “I knew you were going to say that” came from my lips, although I didn’t know. I guess deep down, I did. I cried, I pulled myself together, and cried again when Blaine came in the room. The doctor kept saying, “She’ll be ok; she’ll be ok” and patting my shoulder. It wasn’t until several days later, frantically reading a copy of Nancy Keene’s book “Childhood Leukemia” that I would discover the statistics -- that 80 to 85 percent of kids with this type of leukemia survive. I appreciated the doctor’s kindness; I just wish he had told me that at the beginning. I spent three mind-numbing, terrifying days, believing my daughter was dying.

And so began our journey. A frantic call to my mother, who dropped everything to fly to Georgia and take care of Brayden and Kellen so Blaine and I could both go with Kendrie to the hospital. Another ambulance ride, this one up to Atlanta to get Kendrie settled in at Scottish Rite. Walking through the doors marked “AFLAC Cancer Center” and thinking, “Wait, we don’t belong here!”. Seeing a bald child for the first time and feeling like I’d been punched in the stomach. The dread I felt every time a nurse or technician came through the door to draw blood. Trying to absorb as much medical information as possible, as quickly as possible. How can you ask intelligent questions if you don’t know what to ask?

Learning protocols, what counts meant, what kinds of chemo and medications were to be taken when … and how … and with what expected side effects. Sleeping, sort of, on a fold out sofa-bed (which was better than the chair I had slept in the first few nights) but only sleeping with one eye closed -- the other eye watching the monitors, listening for the beeps and bells and alarms, and desperately alert for the four-year old in the bed next to me who could no longer walk to the bathroom and had to be carried, dragging the iv pole behind us, five and six times a night. Surgery, shots, battles of will over oral medications. Dealing with a child who withdrew completely in a matter of days.

Two weeks in the hospital, and then the combination of happiness and sheer terror when we realized they were letting us go home --- and expecting us to take on the responsibility of her care. I likened it to taking home a newborn, only without the excitement and happy anticipation. We were petrified we would mess up her medications (there were about seventy, at that point, is what it felt like!) or not catch a fever in time, or know what to do if something went wrong, or be able to protect her from the millions of germs that were hovering, waiting to pounce. Please, we want to go home to our other children. Please, can’t we just stay here and let the nurses take care of her a little longer?

But we did it. And she survived. And so did we. In fact, things even got better as time progressed (a concept we had doubted at the beginning!) Sure, we still had that early morning, first-thing-when-you-open-your-eyes-that-still-burn-from-crying-at-night rush of nausea-inducing emotion --- “What’s wrong? What isn’t normal?” and then, “Oh, yeah. Kendrie has cancer.” In fact, even a year later, I still wake up like that sometimes. But for the most part, we’ve accepted our “new normal” and moved on.

Kendrie has hair. In fact, she told me tonight she wants to shave it off so I don’t have to start brushing it.

We’ve had a few low-points; the nausea, aches and pains, steroid tantrums, low counts and a couple of transfusions. People that we thought we could rely on, and who would come through for us, who haven't. But we’ve had lots of high-points as well; she’s done remarkably well on treatment, hasn’t been admitted to the hospital since diagnosis, has maintained her weight and her energy level, the majority of the time. People we never imagined, who have come out of the woodwork to help us. The outpouring of love and support we have received from the majority of our friends, family, and even total strangers we have met on this journey (all of which we will be forever thankful for.) Our military insurance has been a Godsend. I love our doctors and nurses in Atlanta; I hate driving to Atlanta. We only have fourteen months of chemotherapy left! Good grief, we still have fourteen months of chemotherapy left.

Yes, it’s been a year of ups and downs. Much like the see-saw that is childhood cancer. Thank you for letting me share it with you.


OK, how stinkin’ cool is this???? On today, the one-year anniversary of Kendrie’s diagnosis, we officially received our 100,000th hit on her Caringbridge site!! I have to say …. Absolutely perfect timing! And the 100,000th visitor to the site today, was (drum roll, please) Tracey from Bears Who Care in Calgary!! You need to go back through the guestbook yesterday and today to read her funny messages --- she was pretty determined to hit the magic number and she did it! Tracey has been a regular visitor to our site for quite some time, and is a co-founder of BEARS WHO CARE -- "a group of Canadian folks who care about sick children. We offer support, encouragement and smiles to critically ill children all over Canada, through our guestbook support and 'happy mail'. For those of us with healthy children, this is our way of 'giving back', for those of us with sick children, this is a way to show support to our fellow parents and to be a part of a caring community." Tracey, and all the Bears Who Care, make the time to visit lots of other CB sites as well, spreading a little sunshine and cheer to many, many kids, so I am happy to make a donation to Caringbridge in her honor. Tracey, thank you for being a supporter of our site!

The reason the timing of the 100,000th visitor and all the nice messages was so perfect, well, I’ll be honest with you guys and admit (even to myself, I suppose) that I was a little more whacked out by today than I thought I would be. I mean, just what significance does a one-year anniversary date hold for a leukemia patient? And why should today make me any crazier than normal?

Another mom on my ALL-Support Group List, Nicky’s mom Kim, recently posted these words of wisdom when another child on the list hit their one-year anniversary:

“What do you say, ‘Congrats on the one-year anniversary of being diagnosed with leukemia?’ How about, instead, ‘Congrats for making the best out of a difficult time, for learning what unconditional love truly means, for doing things that would probably get you past a couple of classes in nursing school, heck, even medical school, and for making a difference with your family’s pro-active involvement in TNT and other causes.’ “

I thought today would be another normal day, another step towards the finish line; a milestone of sorts, but certainly not an emotional one. I was wrong. I woke up today, glad that Kendrie felt good enough to go to school after coming home yesterday, feeling crummy from the steroids. I woke up feeling blessed and giving thanks that she is still in remission. I woke up thinking how much better our situation is at this exact time this year as opposed to last.

I’ll spare you the boring details, but an in-home computer service technician has, for the most part, turned my computer into a boat anchor. I won’t even go into the incompetence (on his part) or the frustration (on mine) but today, when I realized nothing he said he had fixed was working ……………………. and a Caringbridge update, on today of all days, wasn’t going to happen ………….. I sat in my van in the parking lot at my hairdressers and cried for five solid minutes.

Now, if you know me, you’ll know that I’m not a crier, so that was a pretty unusual event, all in itself. And the fact that I was scaring away potential clients, who must have assumed I was really, REALLY unhappy with my new highlights, over something as unimportant as a computer glitch (although if I ever catch that Bill-Gates-wannabe in a dark alley I swear I will strangle him with a USB cord for all the havoc he has unnecessarily wreaked on my system!) --- suddenly it occurred to me that maybe I was a little more emotional about this day than I thought I was. Who did I think I was kidding? I’ve sat back for the past two weeks, focusing on this day, and telling myself (apparently unconvincingly) that it was no big deal.

But it IS a big deal. 365 days ago, we were told our daughter had cancer. At that time, looking ahead seemed impossible. We were worried about getting through each day, each hour, let alone where we would be in a year. Now, we’re here. Fifty-two weeks of chemotherapy down, fifty weeks of remission. Sixty weeks of chemotherapy to go. We are ecstatic; we are terrified. Do you understand why I’m a certified head case???

So thanks for all the messages the past few days, as we edged our way towards the 100,000 mark and the anniversary date. Your notes of encouragement, all of them, from the very beginning through the past few days, have done much to sustain us through the past year. I’ve said all along that this journal is the only thing keeping me “off the couch” and I really, truly, sincerely appreciate so many of you taking the time to check in and offer your support.

(Thanks also to my girlfriend Kelly for talking me down off the computer ledge today, and to my girlfriend Andrea’s husband, Wonder-Bob, so named for his computer genius, who talked me through the stupid re-installation(s) to make this update possible.)

Love, Kristie

Sunday, October 10, 2004


Week #9 of LTM

Yeah, hands down, if I had to choose between how our family spent Columbus Day Weekend THIS year, and Columbus Day Weekend LAST year, I’d have to say THIS year was much more fun. Oh sure, there were blood draws and count checks involved both times, and mood swings and tears, but last year there was a desperate fear of the unknown, and this year there was cotton candy!!

That’s an easy choice, don’t you think?

Our weekend actually started Friday when we drove up to Atlanta and met friends for lunch --- thank you, Brandon’s mom Kristin, and Mary Grace’s mom D.D. (and Mary Grace’s dad, too, we can’t leave out the guys!) for meeting us for lunch on Friday. I joke about how having a child with cancer has improved our social life, but the truth of the matter is we’ve met some wonderful people along the way and I’m very grateful for that.

After lunch, our whole family went to the clinic where Kendrie had her monthly chemo (vincristine via her port) and was very unpleasantly surprised to discover she would be getting her flu shot. Actually, she figured it out when I put “magic” cream on her thigh in the Fuddruckers parking lot, but I think she was hoping it wasn’t true …. then Nurse Mary showed up with the needle. While it definitely wasn’t the highlight of the day, all’s well that ends well, and it warranted her a trip to the treasure chest, so I think she forgave all of us.

Then we drove over to Stone Mountain, Georgia, where we met our friends the Deatons, who drove down, all the way from Illinois, to take part in the Light the Night Walk. That’s another interesting tidbit about this year vs last year --- last year we were supposed to meet them in Nashville for a fun weekend getaway and we had to cancel. This year they drove twelve hours each way to support us in our walk --- I’d say we’ve been blessed with some pretty good friends! Thank you, Gary, Lisa, Evan, Cara and Anna! (ps Lisa, I still owe you money for the sweatshirt!)

Our families spent the day Saturday at Stone Mountain, which I thought was a lot of fun, but Kendrie was starting to feel a little run down -- a mix of the chemo on Friday, the flu shot, and the steroids she is taking this cycle. She rode in her stroller most of the day (which is extremely unlike her) and even slept through part of the park. The rest of us had a good time, though, hiking up and down the mountain (ok, I admit it, I watched the others hike and thought about what good exercise they were all getting) and admiring all the beautiful autumn decorations; pumpkins, hay bales and scarecrows, which delighted the photo-nut in me!

Then, we headed to downtown Atlanta for the Leukemia and Lymphoma Society’s Light the Night Fundraising Walk, held in Centennial Park. While overall I consider the walk to be a success, I’d have to say that if we decide to take part again next year, there are a few things I would do differently:

1. Familiarize myself a little better with the Atlanta Public Transportation System (MARTA).

2. Get to the park early enough to enjoy all the festivities without stressing that we’re running late because of the damn MARTA system.

3. NOT take a child who just received chemo, the flu shot, and steroids.

And the final thing I would do to insure a fun, family bonding experience next year:

4. Leave my family at home.

I seriously doubt the people around us, our own party included, enjoyed listening to me yell at my kids all night to: Stay with us! Don’t run too far ahead! Don’t lag behind! Stay out of the street! Quit whining! I don’t know how much longer the walk will last! No, there’s no more popcorn! Quit hitting me in the face with your balloon! No, I don’t have anything else to drink! Don’t speak to me in that tone of voice! Yes, I’m sure the park is right up ahead! No, you cannot ride in Kendrie’s stroller with her! No, I don’t know how much farther, for the last time, JUST KEEP WALKING!!!!!

Needless to say, I think we might have over-extended our children just a wee bit on Saturday, ha!

Except for the whiny, tired children near the end, it was a fun evening. Music, free food and drinks, balloons, giveaways, seeing friends we’ve made from Camp Sunshine and the AFLAC cancer clinic, and realizing everyone was there for the common goal of raising money to help beat blood cancers and disorders. It’s easy to get that warm fuzzy when you’re doing your share to be part of the greater good, know what I mean?

We felt really lucky, also, to have friends willing to come and walk with us (even if they regretted that decision about one-tenth of the way through the walk!) The Deatons, all the way from Illinois, our neighbors Susan and Ray and their son Nicholas, who is in Kendrie’s pre-K class, who drove two hours each way just to walk with us, my girlfriend Heidi from right there in Atlanta who braved the downtown traffic with her kids Meagan and Matthew, our online-friend Kaitlin who met us at the park, and of course the other half of our team, Madie and her mom Regina, and Madie’s Aunt Rhonda and Cousin Bobby, who drove up from Florida.

"Team Kendrie and Madie" getting ready to start the walk.

All total, twenty-one people walking, with "Team Kendrie and Madie" yellow t-shirts on, and lots of others who I know were cheering us on in spirit. And, I’m extremely pleased to report, that our team goal, which we set at $1000, was passed. Quickly and easily. Thanks to the kindness and generosity of those of you (some friends, some family, some total strangers!) who mailed checks and made online donations ………….. we raised ……….. a total of ………….. $3,895.00! Maybe we didn’t set any world records, but I thought that was pretty darn impressive!!! A sincere thank you to everyone who helped make that happen for our team. We appreciate the donations, but more than that, we appreciate your support and concern and love for our family.

Blaine and Kendrie, near the end of the walk which they advertised as two miles but I swear felt more like five!


Kendrie, still not feeling well, had stayed home with Blaine and Kellen while I took Brayden to a Brownie Scout meeting. Right as the meeting was ending, Blaine called me on my cell phone to tell me something was “wrong” with Kendrie. I remember thinking, “Well, yeah, I know that, but we’re taking her to the specialist on Monday” and he said, “I really think we need to take her somewhere tonight. She seems dizzy and confused, and she even fell down out on the front porch while we were putting up Halloween decorations.” Now, just where are you supposed to take a kid at 8pm on a Friday night? So I called a friend, asked if we could drop Brayden and Kellen off for just a few hours, and headed to the local ER with Blaine and Kendrie.

When we arrived, we briefly explained what had been going on to the triage nurse and said we were worried because her red count was 4.3 on Wednesday. Clear as day, I remember the nurse giving us an incredulous look and saying, “And they let you take her home like that?” and thinking, “Uh-oh, maybe this really is a big deal.”

What I remember most vividly about the ER visit was that they needed to draw more blood and Kendrie was completely freaking out. Thrashing, screaming, pulling her arm away. Normally, she is an extremely complacent child, but there was just no talking her into this. So while I know the staff had no choice, it was very difficult to watch them as they papoose-wrapped her for the blood draw. I realize that compared to what was coming, the inconvenience of a blood draw seems minor. But I remember feeling terrible that Kendrie was frightened and looking to us to make everything ok, and there was nothing we could do but hold her hand while they held her down and she begged us to “make them stop”.

When the results came back at 3.5, it wasn’t even a matter of discussion. She had to be taken, by ambulance, to the Children’s Hospital in Macon for a transfusion. So after asking my girlfriend Laura if she would mind keeping Brayden and Kellen overnight, off we went. We talked to the doctor about the anemia diagnosis, and he was hopeful that a packed red blood cell (PRBC) transfusion would “kick start” Kendrie’s marrow into production again. Although we didn’t arrive at Children’s Hospital until around 2am Saturday morning, we were hopeful we’d be headed home by Sunday, or Monday at the latest.

To be continued ………………………..

ps. Hey! Check out the counter on the bottom of this page. As of RIGHT NOW, it's at 98,396. And I bet only 20 or 30 THOUSAND of those are me, checking the site myself!!! To be honest, after a while I figured out that I could make a bookmark link directly to the guestbook --- so maybe only ten or fifteen thousand of those are me, ha! Anyway, keep track over the next week or so and PLEASE LET ME KNOW in the guestbook if you are 99,999 or 100,000 --- how stinkin' exciting is that??? If it wasn't so late, I'd put some thought into some cool sort of prize --- maybe a tribute donation to Caringbridge in your honor, whoever you're going to be!! Be sure to let us know in the guestbook!

Friday, October 08, 2004



Week #9 of LTM

Before I begin, let me clear a few things up:

Recanting Kendrie’s diagnosis history is cathartic for me. I think its normal, around the time of a difficult anniversary like this, to grieve a little for the lost innocence. I can look back, visualize our total unawareness of what was coming and what was about to happen to Kendrie, and it literally makes my stomach ache. (or maybe that was the bag or Oreos I ate.) At the same time that I am so proud of Kendrie, my family, and what we have accomplished, I am also sad for what we have all gone through and lost. And grateful for what we still have. And hopeful for what is yet to come. So thank you for putting up with my senile reminiscing. And yes, that is bubble wrap on Brayden’s butt.

………continued from previous journal entry…………..

So on Tuesday Kendrie still had a fever, had begun napping (this is my child who quit taking naps at 18 months) and was looking pretty peaked, to be honest. She was also fussy, and kept begging me to carry her everywhere because her legs hurt. I’m embarrassed to admit that I got frustrated with her, and even said (once or twice) “There is nothing wrong with your legs …. Walk!” only to get annoyed when she would continue to cry, so I’d pick her up and carry her, grumbling all the way about 35 pounds of dead-weight.

Although I was dreading the thought of repeating the blood draw, I could tell she wasn’t feeling any better. So, on Wednesday, back to the lab we went. Again, not the most pleasant experience. And sure enough, the doctor called us that afternoon to tell us her counts had fallen (remember, normal is around 12) from a 4.8 to a 4.3. At this point, he diagnosed her with something called TEC, a form of transitory anemia caused when the body, for some reason, quits producing new red blood cells --- a condition which usually resolves itself on its own.

Kendrie's RBC were low, but everything else looked moderately fine. In fact, I specifically said to him, in a half-joking kind of way, “But you don’t think it’s anything serious, like leukemia or anything, do you?” He reassured me that it wasn’t leukemia, because her white blood cell count was also lower than normal, and told me if she had cancer her white count would be high. Whew, thank HEAVENS!!! What a relief THAT was! I mean, my grandma died from leukemia a few years ago and while I really didn’t know much about it, I knew it was bad news. So, good to know we could rule that out and just concentrate on this pesky anemia.

He was concerned that the specialist couldn’t see her for two weeks, so he got our appt bumped up to Monday and told us to watch her over the weekend. By now it was obvious that she was pale, fatigued, and was still running a fever, but we attributed it to her low RBC. I had always called her “my albino child” but at this point she was downright ghostly. I had kept her home from school all week and I honestly thought by Monday, she would be fine. After all, most viral illnesses run their course in about ten days, right?

So, grudgingly, I called her pre-school teacher and told her we wouldn’t be able to go on the class field trip (which I had signed up to chaperone) on Friday and we called our friends the Deatons and told them we weren’t going to be able to meet them in Tennessee for the weekend like we had planned. Deep down, I suspected that by canceling the trip, that in itself would trigger Kendrie’s blood to start producing the right kinds of cells again and in just a day or two she would feel fine …. Energetic and bouncing all over the place … and we’d sit around all weekend, kicking ourselves for canceling the trip. You know, the whole “wash your car if you want it to rain” theory in action.

So, now we would just sit back, watch her this weekend to make sure she didn’t get worse, and take her to the Pediatric Oncologist/Hematologist (which was still freaking me out just a little) the next Monday, the 13th of Oct. …………

To be continued…………………………

Wednesday, October 06, 2004


Week #8 of LTM
Another silver lining in this cancer cloud is an organization that I’ve mentioned previously called SuperSibs! Back at the beginning of our journey through the Tragic Kingdom (to quote Gwen Stefani) Kendrie was inundated with cards, gifts and toys. I could tell that Brayden and Kellen were starting to think, “Hey, this leukemia thing might not be so bad if it turns your life into a perpetual state of Christmas!” (because they pretty much said that) and was fortunately turned on to SuperSibs! SuperSibs! helps children redefine the "cancer sibling" experience - by providing needed support services and by helping to draw out the greater and important lessons that may benefit these children later in their own lives.

Brayden and Kellen have gotten some neat things from SuperSibs! -- t-shirts (we were told a photo of them in those t-shirts would appear in the November issue of Family Circle, in an article profiling the organization -- I can’t wait to see if it’s true!) small toys and trinkets, stickers, cards, etc, but they received their hands-down-favorite item from SuperSibs! earlier this week --- these awesome trophies! Not only do they say “For Your Strength, Courage and Love, YOU are a Super Sib!” but they also have each child’s name engraved on the trophy. In fact, they’re nicer looking than some of the soccer and t-ball trophies my kids have gotten in the past. And if you have small children who play organized sports, you know it’s **ALL** about the trophy!! So really, this was a perfect gift and we appreciate it very much. Well, all except for Kendrie who wanted to know where was HER trophy???? I'm happy to add SuperSibs! to the list of organizations to whom I will be trying to repay the kindness, when all is said and done.

"Thank you, SuperSibs! for honoring and supporting the siblings of children with cancer"

One Year Ago Today:

It was a Monday, and Kendrie had been running a fever and complaining of arm and leg pain, and the always-fun-to-report-to-the-doctor “pee-pee” pain, since Thursday night. In fact, she’d been complaining of leg pain for quite some time, but the four-day fever was what was bothering me. My kids had never had a fever that didn’t respond to Tylenol. So I took her to see her pediatrician that Monday morning. Although he had never seen Kendrie as a patient before (new military doctor, recently assigned to the base, etc) he patiently listened to my concerns. While he agreed with me that it was probably just a virus, which is exactly what the other doctor had said six weeks ago before sending us on our way, this new doctor suggested running a CBC to rule out any kind of bacterial illness, and a UA to rule out any kind of infection.

So off to the lab we went, where Kendrie proceeded to urinate all over my hand while I held the specimen container, the size of a mini-Dixie-cup, under her in the bathroom, trying in vain to aim for “the stream” (we would soon discover there was a better way for 4-yr olds!) Then, it was time for the blood collection. The four-letter word that best describes this situation is U-G-L-Y. “Stoic”, my child is not. She screamed bloody murder and it was quite stressful, for everyone. (I also think it set the tone for the upcoming two weeks from Hell, but that’s another story.)

Later that afternoon the phone rang and I was surprised to hear the doctor’s voice on the other end, calling to discuss Kendrie’s lab results. He said, and I quote, “that her blood counts were “interesting” “. Hmmmm, interesting??? Just what exactly does that mean??? Apparently her red blood count and her hemoglobin were very low (normal is around 12, and hers was 4.8) and he felt we should get her in to see a specialist immediately, since she was obviously extremely anemic. And, bring her back on Wednesday for another blood check (Yikes, that should be more fun and merriment all around. Did he not hear her screaming, even all the way from the lab?? And he wants to do it AGAIN???)

So I’m thinking, anemic? Ok, well, I can cook more red meat, or give her supplements, or whatever it is we need to do, but I went ahead and called the specialist’s number, only to discover, to my ABSOLUTE HORROR, that it was a pediatric oncologist/hematologist’s office!!! What the hell???? But I told myself not to panic ... after all, hematology means blood, right? It's been a long time since Biology 101, but I was pretty sure that was right. I went ahead and took the appointment they offered, two weeks away, ………… penciled in another blood count for Wednesday ….…. started researching various forms of anemia on the internet …..gave Kendrie some more Tylenol in the meantime ………………… hey, wait, this wasn't going to mess up our trip to Nashville this weekend, was it?......

To be continued…………

Sunday, October 03, 2004


Week #8, Long-Term Maintenance


One year ago today, Kendrie woke up with a fever. Actually, one year ago last night, she went to bed with a fever. We really didn’t give it a second thought. I mean, yeah, she had a weird fever six weeks ago, too, but it’s not cause for alarm, right? We gave her some Tylenol and put her to bed. When she woke up and still had a fever, I just assumed she had some 24-hour bug and kept her home from pre-school that morning. Kellen had a class party scheduled for his kindergarten class in the afternoon and I assumed Kendrie would perk right up -- she LOVED going to the older kids’ classes. Kellen’s teacher took this photo that afternoon, and it breaks my heart to see how pathetic Kendrie looked. I didn’t even realize how crummy she felt until I saw this photo. And I remember being annoyed that the damn fever still hadn’t gone away!


My sister and I have a running joke going about how lucky we are that Kendrie got cancer. To back up and explain a little, my sister is good friends with a girl (who shall remain nameless because I didn’t ask her permission before sharing this story) whose parents divorced when she was very young. I’m not sure about all the details, but her dad either didn’t pay child support, or didn’t pay enough child support, for years and years and years. About the time she turned sixteen, he made a huge, lump-sum back payment on his child support and her mom let her use that money to buy a really nice car. (Way nicer than the green Maverick I drove --- see journal entry of Feb 7th, 2004, if you don’t remember MY piece of junk!) So when her friends would all say to her, “Wow, you’re so lucky your dad gave you the money to buy that car!” she would think to herself, “Yeah, it’s *real* lucky when your parents get a divorce and you grow up without a dad.”

Along those same lines, while we certainly wouldn’t use the adjective LUCKY to describe Kendrie’s diagnosis with leukemia, I have to admit there are a few silver linings in this cancer cloud, and we are feeling pretty fortunate to have them. Like it or not, you have to admit that sometimes, good things come out of bad situations. It’s hard to see them when you’re so busy frowning and scowling about the crap in your life …… but it’s there if you’ll just remember to look for it! (Wow, that sounded kind of Polly-anna-ish, didn't it?)

Case in Point: Family Weekend at Camp Sunshine, held this past weekend at Camp Twin Lakes in Rutledge, Georgia. I was on the phone with my sister, telling her about the weekend we spent at Family Camp last April and how excited we were to go back, and amid the “Oh, it’s so much fun!” and “Oh, there’s so much to do!” and “Oh, we get to spend time with such nice families!” my sister is like, “Um, yeah, you guys are *so* lucky Kendrie got cancer so you could do things like that!” (insert sarcasm) and really, what can we do but laugh? She’s right, of course -- I’d take a boring weekend at home, with three cancer-free kids any day, but as long as this is the hand we’ve been dealt, think of all the great things we’ve gotten to do, places we’ve gone and best of all, the wonderful families we have met along the way!

Highlights of this past weekend included fishing, paddle-boating, bug hunting (NOT my personal favorite) panning for gold, arts & crafts, magic shows, games, baseball, and lots and lots of time just hanging out with other families who also got a big, fat unwelcome houseguest named childhood cancer on their doorstep. As one mom said, “Welcome to the club you never thought you’d join!” Best of all was spending time with online friends: Madie, our fellow ALL friend who is the other half of our Team Kendrie and Madie team for our upcoming Light The Night Fundraising Walk, and her mom Regina. (Thank you all who have donated to our cause already! We appreciate it and will be giving more details and revealing the final amount later this week!)

We also got to spend time this weekend with Brandon and his family, friends of ours from the Lighthouse; with Jacob and his family, whose mom Tiffany is also on my ALL online support group. It was our first chance to meet them in person, but hopefully not the last! (Tiffany, Kendrie has her new outfit for school tomorrow all lined up on the end of her bed --- thanks again!) Other online friends we met in person for the first time included Will and his family, who we had heard so much about, and Brady (Brady's Progress Page) and his family, who we met in passing at the clinic last month .... and who I hope to meet much more often in the future (LaFortune, we need to get together and go for a massage sometime, ha!)

It’s so great that there are organizations like Camp Sunshine who make it their mission to help families like us. Camp Sunshine is the group I am currently working with to start up a middle-Georgia support group for families. Contact me if you or anyone you know would like more information. We are holding our first meeting on November 2nd and I’m very excited about it.

Anyway, like I said, Camp was great. The a/c unit in our first cabin was broken so we had to change cabins the second day (I told you, *this* is my kind of camping!) but everything else went smoothly. Well, except for my kids fighting over everything under the sun (the wagon, whose turn was it to ride, and push, and pull, and whose bag of “jewels” were those, and whose turn was it to use the clippers to pick up bugs, and who was crowding who at the art table, and who got the last can of Coke … the list just goes on and on) But when they weren’t arguing like cats and dogs, we had some real family-bonding time! Kendrie’s favorite part (besides panning for gold which is always a huge hit) was being the “Worm Girl” at the fishing dock. She obviously got THOSE genes from her father!

We also love the Camp Songs CD we were given, which is what the song playing now is from. The singer’s name is (I think) John Abbott and he’s like a kinder, gentler Weird Al, with goofy songs that my kids just love. I could go on and on about how much fun we had, and how relaxing it was to get away from it all for few days, but it’s getting late and I’m tired. So I’ll close for now with a HUGE THANK YOU to the staff and volunteers who worked so hard this weekend to ensure our good time. You were extremely successful. In fact, we are feeling pretty darn lucky to have met you all. (smiles!)

Love, Kristie