Thursday, September 29, 2005


***Monday afternoon update***

Once again my heart is heavy and the news I have to share is terrible. Haley Vincent, the beautiful girl in the turquoise shirt in the Chili's picture at the top of this page, passed away this weekend. I am simply stunned; we just had dinner with them last week. We went out of town and I wasn't even aware Haley had become suddenly, critcally ill until today, when I learned of her passing. Her mother Cheryl and I have become online friends this past year or so and this family is a good one; I'm sure their hearts are broken right now, and mine is also, for them. Haley has a beautiful voice and I know the angel-choir in Heaven is even better today ... but that doesn't diminish the sadness we are feeling down here on Earth. All my condolences to the Vincent family; I am so sad for them and the loss of their beautiful daughter Haley.


***Friday morning update***

It is with a sad heart I tell you that Clare from Maryland passed away yesterday, after a brave battle with her ALL relapse in May and transplant in July. Like many of you, I have followed Clare's story closely these past few months and have been so touched by the unwavering love, support and dedication her family has shown. This is every parent's worst nightmare, and I wish I had words adequate to express my sympathy to Clare's parents, Karen and Benno, and sister Phoebe. Please visit Clare's site and leave her family a note of condolence and support.


78 Days to Go

Autumn has always been my favorite time of year. Always, always, always. Since I was a little kid and my parents used to have friends over to watch the Sooners play, and I would eat myself sick from the relish tray of cheese cubes, Vienna sausages, and sweet pickles (who says we didn’t have class?) -- since I was old enough to enjoy back-to-school rituals (yes, I was one of the dorks who loved going back to school each fall)…. shopping for supplies, new school clothes, even the smell of freshly-sharpened #2 pencils. Knowing that football season is starting -- that’s the absolute best. I am a huge college football fan. The State Fair (corndogs and caramel apples; need I say more?) The drop in temperature, the chill in the morning air, the beautiful colors of fall leaves, dragging my sweaters and sweatshirts out of the garage, pumpkin patches, hay rides, even that smell you get the first time you turn the heat on in the house. I have **always** loved this time of year.

Autumn in Georgia isn’t quite “real”. Although my calendar tells me it is officially “fall”, it is 90 degrees with 90 percent humidity. We’re still wearing shorts and sleeveless tops and sweating away the afternoons. Leaves don’t really change (at least not for long) and our two local pumpkin patches both take place in church parking lots, on asphalt. No meandering hay rides or corn mazes there. But that’s ok. I can envision myself in New England, hiking through the forest trails, crunching the fallen, golden-red leaves beneath my Doc Martin hiking boots. (Me? Hiking? Ok, it’s only a fantasy!) So even in Georgia, thanks to my imagination, autumn is still my favorite time of year.

Now, thanks to leukemia, autumn, while still my favorite, is bittersweet to me. Two years ago, I was apologizing to Kendrie’s pre-school teacher for not being able to chaperone her class field trip to the Georgia National Fair. “I’m sorry, Mrs. C. It’s just a virus, I’m sure, but since she’s still running a fever, I don’t think we should go.”; wondering if the teacher could bring me back a caramel apple. Two years ago, I was outside with Brayden’s Brownie Troop enjoying the crisp evening air when Blaine called me, to say, “Something’s really wrong. … she just fainted on the porch. I think we should take her to the emergency room.” Two years ago, my only view of the changing autumn leaves was from out the ambulance window, as my daughter was taken to Scottish Rite hospital to begin her treatment for leukemia. Two years ago, I brought my youngest child home from the hospital and then took my older two children to a pumpkin patch at a local church. Watching them enjoy picking out pumpkins, the bright sunlight in the clean, cool air --- how could life be any more surreal? My daughter has CANCER for goodness sake, how dare the fall weather be so beautiful? Two years ago, I took my youngest daughter trick-or-treating for Halloween, dressed in the Superman costume that she had picked out months before; home from the hospital only a few days, her face already puffy from steroids, her expression sad and confused, her legs too tired and painful to walk far, so we pushed her the entire way in a stroller, until she begged to go home. Is that how a four-year old should enjoy Halloween?

This year, I’m trying hard not to dwell on the “bitter” part of fall, but to focus instead on the “sweet”. Kendrie is doing well, nearing completion of her twenty-six months of chemotherapy. I don’t know if it’s over for her ….. as we discovered all too well, there are no guarantees on this ride called LIFE. But hopefully this will mark the end of her battle with leukemia and soon be no more than a blip in her rear view mirror. My other two children, while obnoxious as hell some days, have remained healthy these past two years. I have most definitely learned that that is the best you can hope for. We have made friends with families whose children are doing well …. that is sweet. Other families have children who are struggling … unquestionably, that is bitter.

It makes me sad that no matter how clean the air, how cool the morning, how beautiful the leaves, or how viciously the Sooners kick Longhorn tail, I can never take autumn at face value again. I will never see a pumpkin that I don’t remember that day in the pumpkin patch, trying vainly to carry on a normal conversation with the worker and not break down crying. I will never carve pumpkins with my kids without remembering the year Kendrie didn’t have the energy to get off the sofa and take part. No matter how much fun she has this year, running from house to house on Oct 31st, gathering all the sweets and goodies she can carry, I’ll never forget the year she cried to go home and lay down. I don’t think I will ever feel a cool fall morning without remembering that stretch of mornings after diagnosis when I never left her hospital room.

My rose-colored glasses appear to be working in reverse. Although I still love autumn, I no longer embrace it without hesitation, enjoying only the sweet. There is no way to forget the bitter --- the sadness and fear that struck so deeply that one beautiful, crisp autumn day. Fall is tainted, just a little.

But with the experience we’ve gained throughout this journey (I hesitate to say "wisdom" or "maturity", for fear those of you who know me will laugh!) perhaps bittersweet isn’t such a bad thing. Maybe appreciation earned is better than blind appreciation? Who knows? What I do know is that as I type this, I can hear my husband and my children outside my window, playing football in the front yard. The temperature has not fallen and the leaves are not changing, but for this moment, I will do my best to appreciate the beginnings of autumn. (Now, where is that cooler weather???)

Have a great night,

Tuesday, September 27, 2005


Around the world in 80 days

Hey, if someone was able to fly a hot-air balloon around the world for 80 days, enduring wind changes, cold temperatures, dodging high wires and small planes, and avoiding territorial high-altitude birds, surely we can plug along for 80 more days of chemotherapy treatment, right?

This update will be brief. Now, when you are finished sobbing into your Starbucks napkins (oh, wait, those were tears of joy???) I’ll explain: In an effort to cut gasoline costs, the governor of Georgia made the request that all public schools be closed on Monday and Tuesday of this week. Something to do with the gas expense of filling up the buses for transportation, yadda yadda. What this means -- basically -- to us stay-at-home moms, is two sudden, unplanned, never-ending days of bored children and waaaaayyyy too many hours stretching out before us. Sure, in the summer, you’re prepared. You’ve got a plan; a strategy. But two days, in late September, no warning, mid-week, just *launched* at me like that?? What’s that about?? I mean, do these people expect me to ENTERTAIN these kids for two days???

So, anyway, my point is that after having my 39th birthday earlier this month, I suddenly am unable to stay awake past 9pm at night. And now that my free time during the day, while my children are USUALLY in school, has been depleted-- you, the faithful Caringbridge readers, are stuck with a two-paragraph update this week. Well, three or four now, now that I’ve been rambling and complaining like I have.

Thanks so much to everyone who took part in the Chili’s Live A Little, Give A Little campaign. Kendrie enjoyed the peppers that were made for her, and we had a great time at dinner last night at our local Chili’s. We got to sit near Jay, from Macon, who is an actual patient at St. Judes and brought quite a crowd out to support the fundraiser. (Cindy, somebody at your table left a Matchbox car on the floor and the hostess took it!)

We got to share our dinner with our friends Renee’ and Keith and their boys Kody and Ryan (the ones whose hunting clothes Kendrie tries to steal every time we go to their house) and also with our Caringbridge friend Haley and her family. Haley lives in Tennessee, but is treated at Egleston while awaiting her liver transplant. Either way you slice it, she and her parents Cheryl and Bruce drove a long way for dinner! We really enjoyed spending time with you, though, and are grateful you made the drive.

Thanks also to Mercer student Holly who came over and introduced herself to us at the restaurant (Amanda, you should have come over! We would have loved to meet you, too!) Holly, you might not have realized it, but I was about five seconds away from snatching my kids bald-headed due to their obnoxious behavior. Your perfectly timed arrival prevented what would most likely have been an ugly scene --- thanks for your introduction, and your wonderful timing!! If anyone hears how much Chili’s wound up donating to St. Judes, I would love to know.

“Snatch you bald-headed” ….. that was a threat my mom issued to my sister and me while growing up on more occasions than I can count. In light of the duck fuzz, maybe it’s not appropriate for me to say to my children, but it’s one of my favorite phrases and I just can’t help myself.

Ooops. See? Now you’ve got six paragraphs. What with the extra rambling and all.

My kids are going back to school tomorrow. I don’t care if the whole state is out of gas and I have to strap all three of them to my back and carry them myself. I'll balance them on my head like those Ugandan women carry pots of water. I can almost hear the silence now ……. (blissful sigh)

Take care,


WORST PART ABOUT HAVING CANCER TODAY: OK, what is UP with this rash all over my body? It’s mainly my face, neck and shoulders. Mom keeps mumbling something about a methotrexate rash, but I have no idea what that means. She keeps lubing me up with some greasy lotion that makes me shinier than Donatella Versace and it’s still itching anyway! Aaaggghhhh!

BEST PART ABOUT HAVING CANCER TODAY: I am still basking in the glow of Mr. Bruce and Mrs. Cheryl telling my mom last night how cute I am. Of course, they haven’t seen me today, fighting and arguing and wrestling with Brayden and Kellen ….. somebody please tell me I can go back to school tomorrow! I know Mommy will be sad, sad, sad, and missing us all day, but it’s really what I want to do, no matter how difficult it is for her.

Wednesday, September 21, 2005

SPEEDING TOWARDS THE END (or trying to speed, anyway)

86 Days to Go

Actually, I don’t feel very speedy. I don't feel speedy at all. Like when you have a really fantastic, wonderful, much-anticipated goal in sight … high school graduation, wedding, season premiere of Survivor …. and time seems to slow down, the closer you get. Does that happen to anyone else? It sounds a little selfish (OK, a LOT selfish) for me to talk about how weary I am of this cancer gig, when Kendrie is the one doing all the work. But now that we’ve got our sights set and an end seems firmly in place (Have I mentioned to you that there are only 86 days to go?!?) it seems to be taking longer to get there.

Thank goodness for the wonderful social support organizations we have met along the way that have helped smooth (and in some cases, speed up) the process with their encouragement and behind-the-scenes hard work. Some of the biggest for us have been Camp Sunshine, The Lighthouse Family Retreat, CURE, and SuperSibs! I hope everyone knows that I would trade every family camp weekend, every beach retreat, every Quiet Heroes luncheon, every picnic and party and care package and meeting and get-together in a heartbeat. It goes back to the “We’re so lucky Kendrie got cancer!” attitude that I worry a little it must sound like I’m saying. If ever there were a case for a big resounding NOT! … this would be it. But once again, I am thankful for the friends we’ve made along the way and the people who have made it their life’s work to provide support and encouragement to families struggling with pediatric cancer. (Hey, I could describe a few of you Caringbridge junkies the same way!)

Saturday, we got to take part in the first-ever Camp Sunshine Middle Georgia Family Fun Day. Camp Sunshine was kind enough to start up a monthly Middle Georgia Family Support Group Meeting almost a year ago, since most of us live too far away to take advantage of their Atlanta-area activities, where they are based. And this afternoon spent at a local “amusement” center was a fun way for more of the middle Georgia families to get acquainted. It was something like 184 degrees outside (only a slight exaggeration) and by the end of the afternoon, Kendrie (aka “Finishing up her Steroids-girl”) was pooped. But we had a wonderful time and I thought I would share some of the pictures with you.

In the meantime, we can look forward to a few other upcoming activities, like Family Camp Weekend and our (once-hurricane-postponed-pray-it-doesn’t-get-canceled-again) Lighthouse beach retreat. We’ll plug along, putting one foot in front of the other, and focus on the finish line. It’ll get here eventually, even if it feels like we’re speeding through molasses to reach the end, right?

Kendrie, hanging out "in the pit" (This was before she actually worked up the courage to get in one of the go-carts by herself ..... coward, but cute!)

While Dad's 2-seater go-cart was much faster, Kendrie decided she liked hers better. Her comment for Blaine was, "Why is this road so bumply?" Obviously, not the smoothest ride on the road.

Ahhhh, the first-ever taste of being airborne. It's fun, but a lot of work to get bouncing that high.

Kendrie, bless her heart, just didn't have the poundage behind the jump. She never got more than a foot off the trampoline, but she loved every second of it.

If there is a rock climb within a hundred miles, this boy will find it, and conquer it. OK, maybe "conquer" is too strong a word ... but at least give it a good go.

What a perfect way to end up the day .... shooting at your brother from the Bumper Blaster Boats, and trying to avoid his shots in return. At this point, I was dripping with sweat and seriously considered commandeering a Blaster Boat myself and "accidentally" falling in the water. But I thought I might look silly -- a lone adult amidst a group of 7 and 8 yr olds, all of us aiming to steer ourselves under the waterfull on purpose, just to cool off. So instead, I contented myself with sitting on a park bench in the shade, fanning my face with a sheet of paper, like an old lady, and taking the following picture of a very tired Kendrie:

One last thing before I go --- if you haven't heard, Chili's is sponsoring a "Live a Little, Give a Little" campaign on Sept 26th, and will donate 100 percent of their profits (minimum of $100,000) to St. Jude's Children's Research Hospital. You can also go to their web site Chili's Create A Pepper and create an online "Pepper" in someone's honor and make a donation, if you'd like. Please find a Chili's near you and make sure you eat there on Sept 26th -- what a wonderful event! If any of you are reading in the "Middle Georgia" area, we will be having dinner at the Chili's in Macon (Tom Hill Sr. Blvd, I think is the name of the street?) and we'd love to have you join us -- just e-mail me!

Thanks for checking in,
your non-speedy friend,


WORST PART ABOUT HAVING CANCER TODAY: Well, I have no idea. My mom is an insomniac and is writing this update in the middle of the night .... obviously, nothing too traumatic has happened YET!

BEST PART ABOUT HAVING CANCER TODAY: Still sleeping ...zzzzzzzzz, zzzzzzzzzzz, zzzzzzzzzzz.

Friday, September 16, 2005


91 Days to Go! Woo-hoo, double digits!!

Ten-yr olds are weird. I can say that with the smugness of someone whose oldest child is only eight, therefore I have two years to go before someone can accuse *my* ten year old of being weird, although I’m sure that day will come. But for now, I am positive that all other people's ten-year olds are weird. How do I know this? I am speaking with the authority of someone who has spent fifteen hours this week “proctoring” the ITBS testing in a 5th grade class in my children’s elementary school.

Now, I have to say, that even though I am *only* a stay-at-home mom, and not exactly out finding the cure for cancer (wouldn’t that be nice?) or saving baby whales or the rain forest or feeding orphan tree monkeys or anything like that, I DO have a life, and fifteen hours cut quite a bit of chunk out of it this week. Which is basically my cheesy way of saying, “Sorry it’s taken me an entire week to update this site.” Thanks for checking in on us despite my lack of an update.

Now, back to the weird ten-year olds. Here is a partial list of their weirdness, compiled by me, during my proctor duties:

They dress weird. They either spend way too much, or way too little, time on their hair in the morning. They bring bottled water to school with screw-top lids and spend ten minutes puncturing little holes in the top of the lid, so they can dribble the water into their mouths. It would be much quicker to just unscrew the lid, but they don’t see that. They think it is funny to place a snack-sized bag of potatoe chips on the ground and stomp on it to make a loud noise, but rendering the actual snack into dust. They are extremely uncoordinated, as evidenced by the eight million pencils, books, and test sheets that fell or rolled off their desks this week. One girl came to school with a price tag hanging out of her skirt (Although I shouldn't poke fun because that has happened to me as well.) Many of them refuse to blow their nose and prefer sniffling and snorting their way through life. THIS, especially, is not entertaining to me.

The role of a proctor is excruciatingly boring. I would have driven spikes into my own brain but couldn't summon up the enthusiasm. Besides trying to surreptitiously pass Kleenex to a few of them, I spent all week praying to the Heavens that someone’s pencil lead would break so I would have something to do. What does that say about my life, when sharpening a pencil has become a high point in my daily routine? In an attempt, however, to not convey my extreme and total boredom to the class, and also to prove myself in my quest for “Cool Mom” status (you all know what I’m talking about, don’t you?) I had the following conversation with one of the students the first day, while I was collecting their library books off their desks:

Me: “Oh, Harry Potter, I love this series”

Boy: grunting noise.

Me, still trying to be cool and hip: “Have you read them all?”

Boy: “uh-huh”

Me. Still undaunted: “Did you know the new movie is coming out at Thanksgiving?”

Boy: “uh, huh”

Me, floundering a bit: “I’m very excited to see it, are you?”

Boy: grunting noise again.

Me, still trying: “I’ve seen all the movies so far, have you?”

Boy: “uh-huh”

Me, accepting defeat: “OK, good luck on your test”

Then, I walked away, but not before I caught, out of the corner of my eye, the look he exchanged with the girl sitting next to him. NOT, as I would have hoped, the “Wow, I wish my mom was cool enough to like Harry Potter” but rather, the “Oh, my, GOD, some grown-ups are so pathetic!” look. As I skulked away, I wondered if I could break his pencil lead without him noticing.

This morning, I took doughnuts to celebrate the last day of testing. If I can’t impress the class with my Harry Potter prowess, then I’m not above blatant bribery in an attempt to try once more for the elusive “Cool Mom” status. And I had the following conversation with another student:

Boy: “Hey, did you bring those doughnuts for our class?”

Me (feeling quite proud of myself): “Why yes, I did”

Boy: “Dibs on chocolate!”

Me: “Well, actually, I brought all glazed”

Boy: “You men there’s no chocolate?”

Me: “No, I thought it would be easier if they were all the same:

Boy: “No sprinkles?”

Me (wondering why I am explaining myself to a ten-year old): “No, all the same”

Boy: “No crème filled?”

Me: “I thought it would be easier this way”

Boy: “No raspberry glazed? No bear claws? No munchkins?”

Me: “No, you ungrateful little shit, I brought GLAZED! I spent fifteen dollars buying three dozen GLAZED donuts and if you don’t like it then I will take them and I will eat every single one and NONE OF YOU WILL GET ANY!!!!!!!!!”

No, wait, that was only the thought that went through my head; I didn’t really say it.

So anyway, that’s how my week went. And I can only imagine that you're wondering what on earth possessed me to share it with all of you. Hmmmm. No idea, really. So, since I can’t come and regale you with tales of my Mom-Coolness, I’ll regale you instead with photos of Kendrie’s birthday party. Never mind that her birthday was two weeks ago, and by the time I get the update posted she will be eligible for social security …..

Much to her dismay, we did NOT have a Spiderman party …. which everyone knows is the dream of every 6-year old girl on the planet. Instead, I had the audacity to plan a pony-party, with moonwalk, hayride, horses, and a horse-cake. (Sigh--- I’m obviously not getting any cool points with my own kids, either.) Despite her initial hesitation that this would be the most boring party EVER, everyone seemed to have a good time. Naturally, I thought I would share some of the photos with you. (I pay for unlimited photo storage and transfer with Geocities, but seem to have a problem getting little red x’s instead of photos whenever I put several pictures up in one journal entry. So if you see any little red x’s, curse the forces that be at Yahoo, and come back later and check again when the site has re-set itself.)

Brayden, the only one of the three, that would consider wearing boots to the horse party. But at least she *looks* cool, doesn't she?

I am the biggest hypocrit on the planet. This summer, during our Ohio visit, I threw a complete fit about how Kendrie is not allowed to go to any kind of petting zoo because they are nothing but germ filled cesspools, full of disease and illness .... but at her birthday party, I let a horse practically lick her hand off.

The highlight of the day, getting to share her special moment on the hayride with the ever-present Nicholas. PS. Notice she has not only a crossbite, but *also* an underbite? We have years of dental therapy ahead.

Horses, pony rides, a moonwalk, a hay ride ... and what is her favorite thing? The plank of wood hanging from a rope in the tree, otherwise known as a "swing".

A friend of mine made the special horse-cake... which was adorable, even though Brayden was disappointed to discover the entire horse's head was NOT actually filled with icing.

Kendrie and a few of her cronies, determined to make sure Spiderman still has his rightful place as action hero of the day.

Our family, posing for an image of happiness and togetherness. Shortly after this, Kendrie freaked because Brayden touched one of her gifts, and Kellen panicked because there was a fly in the van. And such ends a fabulous day!

And in other news -- cancer related, imagine that! -- Kendrie had her monthly chemo appointment on Monday of this week. The appointment wasn’t until 1pm anyway, and then she received another IVIG transfusion, which takes several hours…. we were hungry and stopped for dinner ... and wound up not getting home until 9:30 that evening. She was perky because she slept for two hours through the transfusion --- next time, I think I’ll take a nap at the same time!

Speaking of next time, despite the fact that her counts have remained strong on 100 percent of 6mp and 66 percent of methotrexate, I was given the option to continue the IVIG transfusions through the end of treatment in December. It was an odd feeling, to have the oncologist look at me and say, “We’ll totally leave the decision up to you” ….. I don’t know if I *want* that kind of power!

Considering “cold and flu” season is coming up, and the only downfall to the transfusion is the time it takes to administer, I opted to go ahead and have Kendrie continue receiving it. We’ve already driven 100 miles to the clinic, and have another 100 to go to get back home; might as well get the most bang for our buck while we’re there, right?

Making the appointment for next month was both complicated, and surreal. She is due for a spinal, so must be NPO (no food for six hours before hand) but also needs a block of three or four hours for the IVIG transfusion ….. We had to coordinate transfusion rooms, sedation/procedure rooms, etc., how long will she have to go without eating that day, etc. But what made it surreal to me is that this will be (God willing!) her last ever spinal tap!!! One final time of someone sticking a needle in her spine, sucking fluid out to look under a microscope and make sure it is still leukemia-free, and then injecting poison into the empty space left by the fluid to prevent leukemia cells from hiding out in the spinal fluid/ central nervous system area. Yahoo, only one more! Who knew I could get so wound up about such a barbaric procedure???

And, it’s obvious we are in the midst of a steroid week here. No hellacious attitude, or hellacious appetite, but she sure feels punky. Lots of whining, lots of tears. And that’s how it affects ME, think how Kendrie must feel. In fact, I just returned from picking her up at school for the second day this week. She comes home and sleeps all afternoon --- and this is the kid who never naps. So I know she feels pretty crappy. Funny, they lowered her chemo doses due to low counts, but steroids are one drug that apparently never gets reduced --- it will definitely be the drug I will miss the LEAST when we get off this crazy chemo train. And that's saying something, ha!

Lastly, car #400,000, where are you??? Whoever the 400,000th visitor to Kendrie’s Caringbridge site, you didn’t let us know in the guestbook! So, like horseshoes and hand grenades, “close” is going to have to count! So, the winner, at 399,996 is Sarina from Pennsylvania! Thanks, BIG thanks, to all of you for checking in on us so faithfully, and Sarina, we will be making a Caringbridge donation in your name…. thank you! And thank you to everyone for continuing to hold Clare and Jay in your thoughts, and for visiting their websites.

I hope you all have a great weekend!

WORST PART ABOUT HAVING CANCER TODAY: I am missing a perfectly good cooking activity and reading time today at school because I don’t feel good. It’s barely 2 in the afternoon and I’ve already put on my new Yu-Gi-Oh pajamas that I got for my birthday. Now, I like my creature comforts as much as the next girl, and those pj’s *are* pretty darn soft, but I do not like feeling so icky and laying down during the day!

BEST PART ABOUT HAVING CANCER TODAY: Only two doses of steroids left this month … that’s the best thing I can think of so far.

PS --- Please visit Julianna Banana's Journal Entry from 9/16/05 for a very touching tribute to a wonderful angel named Marcus. I consider myself a devoted JB cult-ee and never miss an entry --- but this one especially spoke to me.

Sunday, September 11, 2005


**Quiet (kwi’it) adj. 1. making little or no noise or sound 2. free or comparatively free from noise 3. silent 4. restrained in speech or manner etc. etc.

Ok, well, THAT’S not me!

**Hero (her’o) 1. a man of distinguished courage or ability admired for his brave deeds and noble qualities 2. any person who has heroic qualities 3. the principal male character in a story 4. an individual possessing godlike prowess and beneficence who often came to be honored as a deity

Well, I’ve got to admit that #4 is intriguing…. But it’s really not me, either.

Yet, despite the fact I am neither quiet nor heroic, I was thrilled yesterday to be invited to attend the CureSearch Quiet Heroes luncheon, honoring the moms (and a few dads) of children with cancer.

(In case you haven’t figured it out yet, this journal entry is ALL. ABOUT. ME.)

This luncheon was the brainchild of Chris Glavine, wife of NY Mets pitcher Tom Glavine, who works with the MLB Commissioner’s Initiative for Kids, which lists CureSearch as one of their beneficiaries. Chris’s idea, and then put together with the hard work and tireless efforts of Kristin Connor and the numerous CureSearch workers and volunteers.

Chris (since I don’t know her personally, I feel it would be more respectful to call her Mrs. Glavine, but I’ve got to be at least ten years older than her, so then *that* sounds silly, too) wanted to do something to pay tribute to moms of kids with cancer …. the “Quiet Heroes”. She stated in her welcome speech yesterday that it started out as an intimate gathering, perhaps a hundred people total, where moms could be made to feel special for a day and enjoy one another’s company. A time of reflection, celebration, comfort, and understanding among peers. And despite the fact the event grew to include several hundred people, from all over the country, they certainly managed to accomplish all of those things!

I so very much enjoyed getting to visit with the moms I’ve met online, at Camp Sunshine, The Lighthouse, while inpatient, while at clinic, etc. Friends of friends, Caringbridge sites that I follow, people who kindly follow our Caringbridge site, members of the medical community, etc. And especially, the people who worked so hard to put the event together, and the sponsors and volunteers who donated their time, efforts, money, gifts, silent auction items, and most of all, their love and support for the moms who were able to attend.

We had a wonderful meal at the Westin in Atlanta and were able to enjoy the keynote speakers Linda Armstrong Kelly … mom to that guy, oh, what’s his name? The one that rides a bike around???? (Kidding, of course. The part of her speech I found most amusing was when she admitted that while pregnant with Lance, she wanted a girl and planned to name her Erica, after “Erica Kane” on All My Children …. )

I enjoyed the first keynote speaker even more, Liz Scott, mom to Alex Scott of Alex’s Lemonade Stand. If you are not familiar with Alex Scott of Alex’s Lemonade Stand, it’s an inspiring story of selflessness and compassion; a touching story of a little girl with neuroblastoma who accomplished more in a few short years than most adults do in a lifetime. While it sounds insensitive to say I “enjoyed” Liz Scott’s speech, I can honestly say I was touched and so grateful for the opportunity to hear her, and even managed to laugh between the tears.

In addition to the luncheon, goody bags and gifts on our tables (thank you again to the sponsors and donors!) there was also a Silent Auction/fundraiser beforehand that I sincerely hope raised a boatload of money for CureSearch. Yes, it’s fabulous that CureSearch worked with Chris Glavine to honor the moms … but the most admirable work they do is continually raising funds to research a cure and bring awareness for childhood cancer. Raising funds is HUGE, and I was happy to help out by bidding on (and winning!) a 3-night stay in a Callaway Gardens villa! Although Blaine gave me some good-natured grief for spending that much money, I know our family will love the getaway and it’s easy to justify when you consider the cause. And a big thank you to Denise, who surprised me by outbidding me on an item I wanted and then giving it to me as a gift ….. pretty classy, if I say so myself! Thank you, Denise!

As I looked around the table, there was no doubt in my mind that I was sitting amongst heroes. You can visit their children’s sites and read story after story of chemo, radiation, surgery, transplant …. and more importantly, courage, hope, and love. And as I looked around the room, I saw even more:

Brady's mom, Gwen's mom, Camp Jack's moms, Madie's mom, Jacob's mom, Benjamins' mom, Jack's mom, Will's mom, Joshua's mom, and William's mom, just to name a few. I know there are others that I've missed .... Special tribute going out to Hayley's parents and Carter's family for sharing the day with everyone.

And even more moms and dads that I’ve never met and probably will never meet.

The timing of this luncheon was profound to me, for several reasons. First of all, of course, is the fact it was held one day before the anniversary of 9/11. People all across our country suffered, and continued to suffer, the effects of that tragic day. Currently, people in our country are suffering the effects of Hurricane Katrina. While so many of the news reports disturbed me to the point of turning off the TV, I am especially haunted by the elderly, the infirm, and the children. And even more especially (which I think is appropriate, given our place in life) by the children whose cancer care has been disrupted by the hurricane. I can’t imagine how frightening it would be if Scottish Rite blew away and we were left floundering to receive critical care for Kendrie. I know the care is out there, and I’m hopeful people are able to receive it without too much trouble, but sometimes I just wonder, when is enough, enough for these people?

There was an outpouring of public and government support after 9/11, as there should have been. There appears to be an outpouring of support for the victims of Katrina, as well there should be. Childhood cancer is not yet getting support on that scale, but the people at CureSearch are working to change that. Events like yesterday’s Quiet Heroes Luncheon can only help to highlight *our* tragedy, the one our families live with day in and day out.

September is Childhood Cancer Awareness Month. Did you know that? Does anybody know that? I know what month October is. Who doesn’t? September will long be remembered for the anniversary of a tragic event in NYC, and now, one of the greatest natural disasters in our country’s history. The littlest victims in our country deserve attention, too.

I’m rambling now, aren’t I? And what makes it worse is that I sound ungrateful. I just wish everyone in our nation could be as outraged that kids are dying of cancer --every single day-- as they are about the other terrible things that have happened.

So for now, I will pause in my gratefulness for people like Chris Glavine, Kristin Connor, and CureSearch who are helping us both short-term and long-term, and thank them for recognizing the moms …. the quiet heroes, and hope that the smallest, most innocent heroes get the help and recognition they need to beat this disease once and for all. The “Mistress of Ceremonies” yesterday ended the luncheon with the comment that she thought this was a wonderful event, and she hoped the first of many … that she hoped to see us at the next one hundred and fifty. I understood her sentiment; it was a heartwarming day and deserves to be repeated … but I turned to my dear friend Jenny sitting next to me and said, “Good heavens, I hope she’s wrong. It would be better if we never had a need for one of these luncheons again.”

There are lots of schmaltzy poems on the internet about Motherhood….. and although I don’t normally consider myself a schmaltz kind of person, I’ll leave you with my favorite today:

(author unknown)

I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun,
You’re part of me, my little one.

I daydream of the things we’ll share,
Like late-night bottles and teddy bears.
Like first-steps and skinned knees,
Like bedtime stories and ABC’s.

I think of things you’ll want to know,
Like how birds fly and flowers grow.
I think of lessons I’ll need to share,
Like standing tall and playing fair.

When I first saw your precious face,
I prayed your life be touched with grace.
I thanked the angels from above,
And promised you unending love.

Each night I lay you down to sleep,
I gently kiss your head and cheek,
I count your fingers and your toes,
I memorize your eyes and nose.

I linger at your bedroom door,
Awed each day how I love you more.
Through misty eyes, I dim the light,
I whisper “I love you” every night.

I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child, our journeys begun,
My heart is yours forever, little one.

Have a great day,

PS. We have two friends who are really struggling right now and I'd like to ask you to visit their sites and give them some encouragment: Clare from Maryland, whose parents have set aside Monday morning at 10am for a world-wide moment of prayer, thoughts, and well wishes for Clare and she continues to struggle in her ALL relapse treatment. Also, Jay from Georgia, whose family attends our local support group. Jay is in Memphis receiving experimental treatment at St. Jude for his medulloblastoma relapse and I know his parents, Cindy and Jason, could really use some encouragement. You might not think something as simple as a kind note from a total stranger in a guestbook can be as heart-lifting as it can ... but trust me ... those notes are priceless and mean more to us parents than you could ever know.

Monday, September 05, 2005


Wednesday morning update: Well, although Kendrie is home from school again today with a nasty sounding cough and runny/stuffy nose, the fevers have stopped. We spent the day driving to and from the clinic for IV Rocephin, but since her ANC was 1500, we were able to go home .... just warned to watch for more fever, or if she starts feeling seriously punky. So, the verdict appears to be nothing more than a late-summer cold, which for normal people is just annoying, but for a kid with a port-a-cath in her chest, is just a little bit more. I'm pretty sure she'll be back at school tomorrow, anyway. And thanks for the happy birthday wishes for me, too. Yes, Natalie, you are correct. 25. :) (Kidding. I am frighteningly close to finding out for myself if 40 is *really* the new 30!) :)

Tues morning update: Well, scratch my optimistic comment about "no fever". Kendrie woke up at 3am running a little over 101, and it hasn't broke yet, so the on-call oncologist has instructed us to head to the clinic for a fun-filled day of bloodwork and IV antibiotics. Not to blab toooooo much personal information, but happy *&^*&^# birthday to me.


First of all, thanks so much to all of you who left Kendrie birthday wishes in the guestbook over the weekend. I was out of town and didn’t check the guestbook between Friday morning and last night, so logging in and seeing all those well wishes for her was truly heart-warming. I print out the guestbook every so often and I know that the same messages that mean so much to Blaine and I, as a show of support now, will mean just as much to Kendrie someday. She likes hearing them nowadays, but I’m confident that when she gets older they will be even more precious. I will update with photos of her birthday party after the weekend, also. (holding your breath, aren’t you?) :)

Now, for our “big” news ---- she only has 100 days of treatment left! Actually, I think its 102 and that I must have miscounted somewhere, but we’ll jiggle the dates in a later entry. Today, we feel like celebrating this milestone! Can you believe that when she started we were staring down 786 days of protocol?? One hundred might sound like a lot to some of you, but compared to 786, I think it will fly by. Let me sum it up for you in another way:

Only 120 doses of oral chemo pills left. Some nights it’s four pills, some nights it’s eight, but she gets them all at the same time, and she only gets morning steroids five days a month, so “technically”, it’s only 120 doses to go!

Only 56 doses of oral prophylactic liquid antibiotic to go. Sort of. She’ll stay on this antibiotic for several months after treatment, as a preventative measure …. but only 56 "official" doses to go!

Barring any complications or unexplained fevers, only four port accesses to go!

Only four doses of IV chemotherapy to go!

Only two transfusions of IVIG to go!

Only ONE spinal tap to go!

I really feel as though we can see the light at the end of the tunnel. The picture at the top of the page is supposed to be all three kids, holding up fingers to show the wonderful number 100 …. but Blaine had to be recruited because Brayden was too busy pouting and telling me how much she hates me to pose. Five minutes later, she and Kellen were doing the cha-cha around the living room. Truly, she’s a sweet child. Either entering the pre-teen years, or possessed by Satan. I’m not sure which.

Regarding these final 100 days, I’m guessing most of the parents out there can identify with some of my feelings. When your first child is born, you are so excited to reach each milestone (First bath! Solid food! First tooth! Crawling! Walking!) that you wind up wishing away their first year and then sitting back wondering where the hell the time went.

With your second child, you’re so busy making sure everyone is fed and clean and dry and safe and not flushing the remote down the toilet that at the end of *their* first year, you look up and wonder where the hell the time went.

With your third child, especially if you know it will be your last child, you have finally learned to stop and smell the roses. (Which is better than the smell of dirty diapers you’ve been firmly entrenched in for the previous two years!) With Kendrie, I snuggled more, relaxed more, and simply enjoyed the present for what it was. Hey, I had three kids under the age of two and a half, but I was just getting the hang of this peaceful, savoring-the-moment thing.

Fast forward to October 13, 2003, the day she was diagnosed with leukemia.

On October 16, the day she began her chemotherapy treatment, I didn’t think those 786 days would ever end. I was terrified we wouldn’t GET to the end. I admit it, I have blatantly and willingly wished away the past two years of her life (Intensification! Consolidation! First Interim Maintenance! First Delayed Intensification! Second IM! Second DI! Long-term Maintenance!) and, I admit, I will be wishing away the next 100 days as well.

I’m sure when these twenty-six months are behind us, I will regret that I spent so much time wishing for it to hurry up and be over. I’m sure there have been moments …. the present … that I have missed because my eyes were too fixated on the goal at the end. Just getting to the end is a miracle. Maybe being excited about it isn’t such a terrible thing.

I hope everyone is having a nice Labor Day weekend. We had plans to take the kids fishing, then out to dinner to celebrate Kendrie’s birthday. Unfortunately, she woke up this morning with a stuffy/runny nose and a cough. We started the summer with a cold, I guess it’s only fitting that we end with one as well. Hopefully she’ll be feeling better in time for school tomorrow. No fever, so we’re not too worried yet. In light of everything that has taken place a few hundred miles to our west, it seems a little frivolous to be having a birthday dinner anyway. I feel I should write something profound about the loss and devastation, but there really aren’t any words. Plus, to be honest, I’m giving thanks for the last 686 days, and looking ahead to the next 100. I wish the same peace for the hurricane survivors.



WORST PART ABOUT HAVING CANCER TODAY: I don’t think it’s cancer-related, but I am getting dang sick and tired of coughing and sneezing today, and of my mom and dad checking my forehead all day. They think they are so sneaky, but I can see right through them! “Checking to see if any more hair has grown” …. My foot!

BEST PART ABOUT HAVING CANCER TODAY: Well, at least I just took my last dose of Bactrim a few minutes ago and don’t have to take any more of that foul-tasting crap for the next six days --- that’s a good thing, right?

PS. Hey! We have been truly blessed by the family and friends that have followed along on our journey and who faithfully continue to check in on my insane journal ramblings. According to my calculations, we should hit visitor #400,000 sometime near the end of this week! If you are that person, would you please sign the guestbook and let us know? I'd be honored to make a Caringbridge donation in your honor ... much like our dear friends Mr. Bruce and Mrs. Sandy did for Kendrie last week. Thank you!

Thursday, September 01, 2005


104 Days to Go!

I just have to say how funny it is to hear that so many of you share your homes with hair twirlers like Kellen. His new nickname, based on your suggestions, is “Tornado Head” (which is much better than what I was calling him {predictably} “Alfalfa”.) Based on everyone’s personal experience, I have great faith he will either stop twirling it on his own, twirl it until he’s 80 years old and there’s not enough left to twirl, or fall somewhere in between. At least we have it narrowed down, right? :) But the fact that so many other kids out there twirl their hair is really comforting.

Now, the fact that there are so many other duct-taped whoopee cushions out there is really, truly frightening! I wonder if the manufacturers of whoopee cushions and 3M Tape are in cahoots? And why is it that husbands nation-wide think anything can be fixed with duct-tape, a Phillips head screwdriver and bungee cords? Anyway, Kendrie’s popped in another spot, and is duct-taped yet again, so I fear the life of the whoopee cushion might be coming to a slow end at our house. Oh well, there’s always Christmas, right? And we could always try to find one with a remote control…..

At any rate, I wanted to talk to you for a minute about having goals. (But let me interject here that I have no idea what is up with this song. I had this journal entry in mind and searched iTunes for “goal” and this is what I got. It’s a little bizarre, actually, but I paid 99 cents for it and I’m going to use it, by golly!)

Now, where were we? Oh yes, GOALS. I have many goals in my life, most of which are unattainable. Even if I actually lost 40 pounds (Goal #1) and somehow contrived to meet Brad Pitt (Goal #2) I doubt I could convince him to leave Angelina Jolie and come live in my house with me (Goal #3). I’m not looking for any kind of relationship with the man, I’d just like him to hang around so I can look at his chiseled features and amazing biceps all day. But I digress.

One goal that I’ve had for years, that I’ve had much more success in meeting, is that of sitting down to dinner as a family every night. Some nights it’s hard to squeeze it in between soccer and gymnastics and homework, but we mange most nights to eat together at the kitchen table. My children usually meet their dinnertime goals as well, which seem to be, in no certain order:

**Don’t eat anything Mom cooks.

**Make sure Mom knows you don’t like what she cooked.

**Poke things around with your fork, looking like you have a very bad smell on your upper lip.

**Ask Dad repeatedly if there isn’t something else you could have, avoiding the grumpy look on Mom’s face.

**Refuse to eat your dinner and then ask for a snack ten minutes later because you are “still hungry”.

All of this “not eating” gives my kids lots of time to regale us with tales of school happenings, jokes, deep, profound comments about the meaning of life, and for us to listen to them practice their farting armpit skills. Last night was no exception. We also play a game called “Two Good” where the kids take turns telling us the two best things that happened that day. This is the gist of how our conversation went last night:

Kristie: “OK, Kellen, your turn. What were your two-goods today?”

Kellen: “Um, playing soccer at recess, and staying on the green card at school”

Blaine: “The green card means you didn’t get in trouble all day, right?”

Kristie: “Kellen, you’ve gotten the green card every day since school started … good job!”

Blaine: “Is that your goal, to go the whole year on green card?”

Kellen: “No, my goal is to live to be 100”

Kristie: “I thought your goal was to eat pizza at school every day this year.”

Kellen: “That was my old goal. My new goal is to live to be 100.”

Kristie, seeing an opportunity to work some life-lessons into the conversation: “Kellen, that’s a good goal. I can think of at least three things you could do to help you live to be 100. Can you tell me what one of them might be?”

Kellen, poking discontentedly at his meal, and sounding unenthusiastic: “Um, eat your vegetables?”

Kristie: “That’s right! Very good! Take a bite of that casserole. Now, Brayden, what about you? What would help a person live to be 100?”

And the conversation went back and forth for a moment while suggestions like “Don’t smoke” “Exercise” and “Take vitamins” were issued by Brayden and Kellen. I noticed Kendrie hadn’t spoken, so I turned to her and asked, “Kendrie, can you think of anything that would help Kellen live to be 100?”

And with the wisdom and clarity of her almost-six-year-old mind, she suggested, “Um, just don’t die?”

It’s really sobering when you realize your kindergartener is smarter than you are.

So, I’m going to suggest a few goals for you Caringbridge readers as well, this holiday weekend. First of all, please take a moment to visit the site of an online friend of ours who is having a very hard time right now, Clare from Maryland. As you might remember, she relapsed with her leukemia and had a transplant almost two months ago. She is having an extremely difficult time of things right now and could use some support. Please visit her site and leave a message of encouragement for Clare and her parents.

Secondly, I mentioned the strong need for blood donations in my last journal entry. Well, it was true then, but even more true now in the wake of Hurricane Katrina. Please, if you are able, take an hour out of your day to donate a pint of blood. Your can visit the Red Cross website to find a blood drive near you and sign up online to donate.

I’m going to leave you with some statistics about blood donation that are very interesting. I blatantly stole them off of Cali Ali’s page, a remarkable young woman who finished her ALL treatment just in time for her high school graduation, and is now preparing for her freshman year in college. Her mom Marey is a strong advocate of blood donation, and if you search the journal history on Ali’s site you can see pictures of Marey and her other daughter Lexi donating. Like Ali, Kendrie will never, in her entire life, be allowed to donate blood. So those of us who ARE able to donate …. should.

Here you go. Please read through this, paying particularly close attention to numbers 48 and 55 (hey, I only need to donate 40 times to reach my #1 Goal!) and then go donate yourself. Make that YOUR goal for this week!


56 Facts About Blood and Blood Donation
One for each day between your blood donation!

1. 4.5 million Americans would die each year without life saving blood transfusions.
2. Approximately 32,000 pints of blood are used each day in the United States.
3. Every two seconds someone needs blood.
4. One out of every 10 people entering a hospital needs blood.
5. Just one pint of donated blood can help save as many as three people’s lives.
6. The average adult has 10 pints of blood in his or her body.
7. One unit of blood is roughly the equivalent of one pint.
8. Blood makes up about 7 percent of your body's weight.
9. A newborn baby has about one cup of blood in his or her body.
10. The average red blood cell transfusion is 3.4 pints.
11. Blood fights against infection and helps heal wounds, keeping you healthy.
12. There are four main blood types: A, B, AB and O. AB is the universal recipient and O negative is the universal donor.
13. Blood centers often run short of type O and B blood.
14. Shortages of all types of blood occur during the summer and winter holidays.
15. If all blood donors gave 2 to 4 times a year, it would help prevent blood shortages.
16. If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood.
17. About three gallons of blood supports the entire nation's blood needs for one minute.
18. Blood donation takes four steps: medical history, quick physical, donation, and snacks.
19. The actual blood donation usually takes less than 10 minutes. The entire process, from when you sign in to the time you leave, takes about 45 minutes.
20. Giving blood will not decrease your strength.
21. You cannot get AIDS or any other infectious disease by donating blood.
22. Fourteen tests, 11 of which are for infectious diseases, are performed on each unit of donated blood.
23. Any company, community organization, place of worship or individual may contact their local community blood center to host a blood drive.
24. People donate blood out of a sense of duty and community spirit, not to make money. They are not paid for their donation.
25. Much of today's medical care depends on a steady supply of blood from healthy donors.
26. One unit of blood can be separated into several components (red blood cells, white blood cells, plasma, platelets and cryoprecipitate).
27. Red blood cells carry oxygen to the body’s organs and tissue.
28. There are about one billion red blood cells in two to three drops of blood.
29. Red blood cells live about 120 days in the circulatory system.
30. Platelets help blood to clot and give those with leukemia and other cancers a chance to live.
31. Apheresis (ay-fur-ee-sis) is a special kind of blood donation that allows a donor to give specific blood components, such as platelets.
32. Donated red blood cells must be used within 42 days of collection.
33. Donated platelets must be used within five days of collection.
34. Plasma can be frozen and used for up to a year.
35. Plasma is a pale yellow mixture of water, proteins and salts.
36. Plasma, which is 90 percent water, constitutes 55 percent of blood volume.
37. Healthy bone marrow makes a constant supply of red cells, plasma and platelets.
38. People who have been in car accidents and suffered massive blood loss can need transfusions of 50 pints or more of red blood cells.
39. The average bone marrow transplant requires 120 units of platelets and about 20 units of red blood cells. Patients undergoing bone marrow transplants need platelets donations from about 120 people and red blood cells from about 20 people.
40. Severe burn victims can need 20 units of platelets during their treatment.
41. Children being treated for cancer, premature infants, and children having heart surgery need blood and platelets from donors of all types.
42. Anemic patients need blood transfusions to increase their iron levels.
43. Cancer, transplant and trauma patients and patients undergoing open-heart surgery require platelet transfusions to survive.
44. Sickle cell disease is an inherited disease that affects more than 80,000 people in the United States, 98 percent of whom are of African descent. Some patients with complications from severe sickle cell disease receive blood transfusions every month – up to 4 pints at a time.
45. In the days following the September 11 attacks, a half a million people donated blood.
46. Females receive 53 percent of blood transfused; males receive 47 percent.
47. 94 percent of all blood donors are registered voters.
48. 60 percent of the US population is eligible to donate – only 5 percent do on a yearly basis.
49. 17 percent of non-donors cite “never thought about it” as the main reason for not giving, while 15 percent say they’re “too busy.” The #1 reason donors say they give is because they “want to help others.”
50. After donating blood, you replace these red blood cells within 3 to 4 weeks. It takes eight weeks to restore the iron lost after donating.
51. Granulocytes, a type of white blood cell, roll along blood vessel walls in search of bacteria to eat.
52. White cells are the body's primary defense against infection.
53. There is no substitute for human blood.
54. It’s about Life.
55. Since a pint is pound, you lose a pound every time you donate blood.
56. Anyone who is in good health, is at least 17 years old, and weighs at least 110 pounds may donate blood every 56 days.

PS. BIG NEWS ALERT!!! Although the celebration isn’t until next weekend, tomorrow is actually Kendrie’s 6th Birthday! Please leave her a note in the guestbook, wishing her a happy birthday. I’ll be sure to update with party details and pictures next weekend. Then, be sure to go to Clare’s site and leave a kind note for her as well. Thanks!