Sunday, February 27, 2005


(But probably not the kind you expect)


(Come on, you know me well enough by now to know I could never squeeze all seven days of the vacation into one single journal entry, don’t you???)

291 Days to Go

Let me begin this journal entry by mentioning what is hopefully obvious: I love my kids. As much as there are drops of water in the ocean, as many stars as there are in the night sky, that’s how much I love my kids. Now, with that said and over with, let me also tell you that I have never, in my 8 years, 2 weeks and 14 days as a parent, been as upset, disappointed, annoyed, angry, baffled or hurt by their obnoxious behavior as I was this past week in Orlando. While I have never actually *seen* Nanny 911, it's a pretty good bet that had there been talent scouts at Disney World, we would have been cast as the next family.

I know what you must be thinking ….. “Come on, what family vacation wouldn’t be complete without a little obnoxiousness???” No, I don’t mean the late-in-the-afternoon-everyone-is-worn-out-so-a-tantrum-or-two-is-inevitable kind of obnoxiousness that often takes place on vacations ……. or even the sort of “He’s touching me it’s my turn I had it first that’s my seat I called it first she hit me that’s not fair I hate you I hate you double infinity!” kind of moments that I could put a funny twist on and share with the rest of you. Pure and simple, I’m talking about three kids who started in on Day 1 and argued, fought, pouted, whined, complained, bitched, moaned, bickered, and quarreled their way through the Happiest Place on Earth. With each other. With their dad. With me.

As a parent, I am of course accustomed to being cast in the role of villain. In fact, I figure as long as I am thwarting their happiness and making their lives miserable at every turn, then I am doing my job correctly. But never have I been blamed, ruled, judged and convicted as “Totally Incompetent” as many times as I was this past week. I could do no right … by anyone, for anyone. I packed the wrong shoes. I packed the wrong jeans. The wrong shirts; wrong stuffed animals. Forgot to pack a swimming life vest for Kendrie. Went to Wal-Mart and purchased a new life vest, but didn’t buy a Scooby Doo life vest. Doesn’t matter that they didn’t SELL a Scooby Doo life vest, the one I bought was still wrong. According to each kid, depending on the time of day and the location and the axis of the earth, I liked the other kids better and favored them in every way possible. I picked the wrong activities, the wrong restaurants, the wrong snacks, the wrong souvenirs.

Quite frankly, I found the entire week to be exhausting.

I’ve never experienced that level of kvetching before. I felt like President Bush, trying to please the Republicans and the Democrats and the Independents, all at the same time. I failed miserably.

Blaine says I’m exaggerating; that I need to focus on the positive moments that took place. Thankfully, there were many. I don’t think the tale of their attitude is a complete exaggeration, but I’m not going to burden the rest of you with any more specific stories of their obnoxiousness. Scattered amongst the bitching and moaning were moments of joy, bliss and wonder. THOSE are the moments I’m going to focus on …. scrapbook ….. share with you. Hey, consider yourself lucky. By omitting the griping, the journal entries will be much shorter!

I will get on to the thank you’s regarding the moments of happiness in the next entry. For today, I want to thank the people who unknowingly helped me realize, sometimes in moments of complete frustration and despair, that the trip could have been worse.

Thank you to the mom at Guest Services Check Out at MGM Studios whose kid was pitching an absolute fit, for standing there calmly, then turning and giving me “the look” --- the look of camaraderie between Mothers Of Obnoxious Children, that says, but hey, we love them anyway.

Thank you to the mom of those teenagers at Universal, who I overheard say to them, “Would you two knock off the fighting already?” I mean hey, she’s been training her kids for ten years or so longer than I’ve been training mine. If HERS are still fighting, maybe I shouldn’t feel so bad.

And to the mom I witnessed at Islands of Adventure placing her young, screaming, flailing child into his stroller a little too emphatically for my taste ……. Well, if nothing else, thanks for making me feel better about myself for at least not resorting to body-slamming my children.

Thank you to the moms who discreetly turned their eyes and looked the other way when I reached the point of Total Motherhood Meltdown in Suess Landing. I mean really …. how proud can I be that my kids are most likely the first in history to be put in simultaneous time-outs in Who-Ville while I yell at them “that I have REALLY had it this time!”

Thank you to the mom I saw literally dragging her reluctant, hesitant, crying child by the arm, chasing after Tigger with an autograph book at the Crystal Palace Character Lunch … for letting me know that despite my schedules and lists of activities and laminated park maps, that there were still other trip-planners out there who were more inflexible and grimly determined than I was.

Thank you to the couple I watched fighting outside the Haunted Mansion (sorry, but there was really no where else to look) … the couple who are more than likely headed to the divorce attorney’s office tomorrow morning, for letting me know that no matter how annoyed Blaine and I got with the kids, we never took it out on each other in such a snappy, hateful manner.

To the mom who spanked her daughter, really hard, in the Curious George bathroom for playing with the water in the sink, in full view of Brayden and Kendrie and letting my daughters see that I am actually NOT the single meanest mom on the planet.

And finally, to the teenagers I witnessed speak and act so contemptuously and disrespectfully to their mother at Adventureland, and to their mom who just stood there and took the abuse --- I might have spent a good portion of the week (too much!) disciplining my children and correcting their rude behavior, but at least I know they won’t grow up to be as obnoxious as you.

Finally, Proof Positive Moments from the past week that the whole “stars in the sky and water drops in the ocean” comment is true and I really love my kids that insanely much, even though they raised the bar for bad behavior at a theme park:

1) I paid six dollars for a PB&J sandwich for Kellen and didn’t even gripe when he only ate half of it.

2) I not only purchased, but actually **wore** an extremely unflattering fanny pack for six days.

3) I not only allowed, but encouraged them to have ice cream for breakfast, despite Kellen’s comment that he wouldn’t eat ice cream for breakfast because it was unhealthy (this comment made while eating a bag of m&ms at 8am)

4) And finally, the fact that I didn’t beat them or abandon them in Orlando, both of which I seriously considered doing.

I’ll gather my thoughts, peruse the happy photographs that I took, and give you more of the details (positive ones only, I promise!) from our visit in the next entry. For now, it’s back to reality with a clinic visit for Kendrie tomorrow in Atlanta. I hope everyone had a great week in our absence!

Love, Kristie

Saturday, February 19, 2005



300 Days to Go!

Wish us luck, we are loading up the car and getting ready for our Disney trip! I keep reminding myself, as long as I don’t forget her chemo, there’s nothing we can’t buy at Wal-Mart, right? (Repeated over and over and over to myself, in an attempt **not** to pack the entire house, which I have a tendency to do, as Blaine can unhappily attest!)

Anyway! In mentioning to friends and co-workers recently that we were fixing to take Kendrie on her Wish Trip, Blaine and I noticed a few interesting reactions. Friends were, of course, happy for us and wished us well. Those who don’t know us as well either seemed startled, as they assumed this must mean Kendrie had taken a turn for the worse, or they seemed perplexed that we were entitled to a trip --- after all, isn’t that for really, really sick kids?? Terminal kids? As those of you who follow this journal already know, I was also wondering if we were entitled and feeling a tad guilty for taking a Wish Trip. Is this “appropriate” for Kendrie, doing as well as she is, to be the recipient of such a kind gift?

Wednesday morning, I had one of those periodic parent-teacher meetings with Kendrie’s Pre-K teacher. Yes, she’s brilliant, yes, she’s a leader, yes, she’s the greatest thing since sliced bread (Kendrie, not the teacher) …. we already knew all that. Her teacher said absolutely no problem with her missing a week of school for a Disney trip, but seemed surprised it was a Wish Trip. Then, when I mentioned she would still be gone the following Monday for her chemo treatment in Atlanta, the teacher …. the one who has been with her all year …. said, “Still? She’s still getting chemo?? Even with all that hair?”

I was completely taken aback by that …. has she not been paying attention??? Where has she been? Of course, the assistant teacher is actually the one who works more with Kendrie, has taken such an interest in her, and is the one I warn every month when Kendrie is on steroids -- you know, when it’s important to notify the school staff of the upgraded tsunami-storm alert warning.

So I got to thinking …. do people not realize she is still on chemo because she looks good and feels pretty good and plays hard and does well in school? Does the treatment for leukemia go on so *bleeping* long that people outside close friends and family just forget about it?

For the record, here is a glimpse into Kendrie’s current treatment plan:

She is on 28-day repeating cycles of chemo.

Every night she takes one and a half pills of the chemo drug 6mp; except for Sunday, when she only takes one 6mp pill. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite.

Every Tuesday night, she takes seven and a half Methotrexate pills, an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches.

Four times each weekend (Sat. am and pm, and Sun. am and pm) she takes a dose of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts.

For fun, we’ve added to the mix one half of a Claritin pill each night, which has helped quite a bit with the cough she hadn’t been able to shake since Christmas.

For the first five days of each 28-day cycle, she takes the steroid Decadron; one pill each morning and one and a half pills each night. Decadron is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes (ya think?) increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability. That sounds just like me when I am pregnant. I have to laugh at that last one; "extreme irritability" … I’m taking these side effects listed directly out of Nancy Keene’s book “Childhood Leukemia” and while we fortunately don’t get most of them, boy oh boy, do I agree with THAT one!

She still has not learned to swallow a pill or gel cap, so we crush all her meds and give them to her in applesauce with a water chaser. By my estimation, by the time therapy is over, she will have eaten enough applesauce to fill an Olympic sized swimming pool.

Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at the clinic in Atlanta. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.

And last but not least, once every twelve weeks she has a spinal tap (ie, lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can’t cross the blood-brain barrier.

That’s pretty much it in a nutshell; the maintenance portion of Kendrie’s treatment protocol. The first ten months of therapy were considered “intense” …. This maintenance portion is less harsh, but lasts another sixteen months. So, two years and two months total. If Kendrie were a boy (like she prays for every night, ha!) she would get an additional year of maintenance therapy due to the risk of testicular relapse. If she were to relapse, we would either be looking at some form of transplant, or we would scratch all the chemo she's already done and start over, from square one, with a harsher protocol.

This month, she only missed one half day of school because she wasn’t feeling well (it’s usually one or two half days a month that she misses due to the steroids) but we did have our first episode of “chemo burns” on her palms; small, white blisters all over her palms that itched like crazy. The school nurse called me twice this month to request permission to give her oral zofran, her anti-nausea medication. The school nurse also calls me at least once or twice a week to update me on the status of viruses/flu/chicken pox/etc at her school. She is a HUGE blessing to me!

So, where exactly am I going with all this???? Besides boring you to tears?

I think (and am grateful) that through local organizations like Camp Sunshine and The Lighthouse Retreat, that we Georgia families are in the wonderful position of meeting lots of other families, often dealing with other kinds of cancers. Some of my newest, most-admired friends are the moms of kids being treated for medulloblastoma, neuroblastoma, and rhabdomyosarcoma. Another woman, who I am so happy to have met and consider a friend, is a mom of a germ cell tumor patient. Her site is Mary Grace. She and I and another mom were having dinner a few weeks ago (Kendrie was the only kid there with hair, how odd did that feel?!?) :) and she was talking about Mary Grace's upcoming surgery. She was diagnosed last August and has gone through chemo, radiation, and now surgery to remove the tumor. I'm thrilled to report the surgery was this week and things went great --- Mary Grace is cancer free!! I truly couldn’t be happier for this wonderful family! And, I admit that I felt a twinge of envy that the treatment protocol for leukemia can’t be whittled down to six months, also. Then I felt ashamed of the envy, since these other cancers seem so much “worse”. I mean, even the doctors say leukemia is the “good” kind of cancer for your kid to get. Who knew there was such a thing???

I also got to spend time with past weekend with two neuroblastoma moms, Brandon's mom and Camp Jacks' mom. We talked about how some protocols are longer than others, and what some of the different protocols entail, and it was a good reminder to me that as envious as I might be of the shorter protocols, the optimistic survival rates for leukemia make it easier for me to face the challenge. Yes, the long treatment stinks and yes, some kids don't handle the side effects of chemo as well as Kendrie has. But ultimately, the vast majority of kids diagnosed with leukemia will go on to lead long and healthy lives. I can't imagine being told my child only has a 30 or 40 or 50 percent chance to begin with ........ and heaven forbid they relapse, because there is NO cure for relapse with some of these cancers.

Camp Jack's mom summed it up perfectly: Their (neuroblastoma) treatment is like a sprint-- fast and furious and they're desperate to get to the finish line. Leukemia treatment is like a long distance, marathon run. We need endurance and longevity and sometimes it seems like the end will never get here. Does that mean their treatment is easier because it's shorter? No, of course not. Or that our treatment is any less terrifying because the chances for survival are better? No, of course not again. We're all in this together. Truthfully, I feel fortunate to have met other families who can help me keep it all in perspective. Ours sucks; theirs sucks. Pediatric cancer pretty much sucks. Did you see the movie Legally Blonde 2, where Reese Whitherspoons’ character instantly bonds with a woman she meets who wears the same sorority ring as she does? Believe me when I tell you there is a bond you feel with another parent who has also heard the words, “I’m sorry, your child has cancer”. The kind of cancer, and the length of treatment, don’t matter. They all stink.

My point, although it took me a good twenty minutes and who knows how many words to get here, is that yes, Kendrie looks good and feels good …. so good that her own teacher thought she was done with chemo (!) But she has still gone through a lot and I’m not going to minimize that just because our outlook is hopeful. Next week, when we are wearing our Make-A-Wish buttons at Disney like the badges of courage they are, and being allowed to jump to the front of lines, I refuse to feel guilty about it just because she is doing well and doesn’t fit the mold of “really, really sick Make-A-Wish recipient.” It has been a life-altering sixteen months so far. We are ready for a brief respite from our marathon, where we can pass the baton to a big black mouse with funny pants, even if only for a few days. My plan is to return home refreshed and rejuvenated, ready to tackle the remaining ten months head-on. And, do what I can in the meantime to encourage our fellow racers …. whether they are sprinting to the finish, or trudging along in an endurance race. We are all racing … we all get tired at times. So, there it is. My justification for taking my kids on this Wish Trip to Orlando. For what Kendrie has gone through and for what Kellen and Brayden have sacrificed (whether they knew it or not) along the way.

One last mention before I sign off for the night (actually, at this point, it will be technically “morning” before I get the update finished) -- Kendrie received her first hair cut yesterday. Not my choice, and not something I am happy about. I had taken Kellen for a desperately-needed trim and Kendrie announced about a million times that she wanted a haircut. She’s been asking for a month or two, ever since it got too long to spike on the top. I kept asking her if she was sure because deep down I was hoping she would change her mind. But she insisted, so I said ok and up into the chair she climbed. I’ll admit I got a little misty-eyed, thinking about how far we had come and what a milestone this was. Then, I’m not quite sure what the hairdresser was doing, but she mentioned something about spiking it and yet retaining a sense of femininity at the same time. So, Kendrie is now the proud owner of the World’s Worst Pre-School White Trash Mullet you have ever seen in your life. And, she refuses to wear it spiked. That was money well spent, don't you think? Don’t be surprised when you see me putting those funny mouse ears on her head in every picture from Disney. How long until it grows out again???

We’ll update when we get back!! I hope you all have a great week,


PS. I would like to let all of you know that I was donating blood on Tuesday and the technician mentioned to me that the state of Georgia is critically short of blood right now. They are even planning to do a media-appeal for donors. If you have a spare hour, please consider donating. ALL states, not just Georgia!! Thank you!

My perspective is that my mom is a blabbering fool and there is no need for me to make this update any longer. See you in Florida, baby!

Monday, February 14, 2005

Our Weekend Trip to Atlanta

(aka… How many tantrums can one small child throw in a 12-hour period?)

(aka… Did somebody put her on steroids and not tell us??)

304 Days to Go

What’s great about our cancer journey? The friendships we have made, and are continuing to make, along the way.

What’s *really* great about our cancer journey? When these new friends invite us into their homes and into their lives and we get to spend quality time together as families.

What stinks about our cancer journey? Well, the fact that we’re on it to begin with is kind of stinky.

What *really* stinks about our cancer journey? When the aforementioned quality time, with the aforementioned new friends, is tainted by the presence of a child who acts so ugly you worry your first invitation to Atlanta will also be your last.

Mike, Kristin, Ryan and Brandon …. Let me APOLOGIZE up-front for the way our weekend, wonderful in every other way, ended on Sunday with the appearance of the 8th dwarf; "Crabby"!!

We had a really nice time this weekend on our trip to Atlanta, with the exception of when Satan showed up and possessed our youngest daughter. We had received an invitation to a special showing of the Big Apple Circus at Stone Mountain in Atlanta from Camp Sunshine, but what made it even more special was the invitation we received to drive up the day before and spend the night with Brandon’s family, the Connors. If you’ve never visited Brandon’s site, you should do so for two reasons. Well, okay, three reasons. First of all, he’s just darn cute. Second, the story of his neuroblastoma diagnosis and cure is truly proof of a modern-day miracle and sometimes you just need a reminder that good things do happen. Third, his mom Kristin is doing an amazing job in her position at CureSearch to raise funds and awareness to find a cure for **ALL** childhood cancers. I focus primarily in this journal on leukemia because that is the cancer that has so affected our life. But there are, sadly, so many other cancers out there and CureSearch, and the people like Kristin who work there, are making a difference. Kristin, you rock!

But I digress. We showed up at the Connors and the kids were thrilled to see Ryan and Brandon. The best part of the afternoon was feeding the geese in the pond across the street. The lighting was really nice, so you’ll have to excuse me while I subject you to a visual of some of the photos we took. Most of the photos were of the backs of the kids’ heads, as they ran away from me, chasing the geese. But I did get a couple of cute ones.

The kids being silly, l-r, Kendrie, Ryan, Kellen and Brayden

Oh, wait, now THIS is being silly!

Hey, everybody needs a lift sometimes, right?

Then, the evening got even better when CampJack and his crew joined us for dinner. Jen and Stephanie, we’ve been following Jack’s site for months and we really enjoyed getting to visit with you guys! Your kids are so adorable and I want to thank you for humoring Kendrie and her obsession with Baby Kate.

L-R, CampJack, Brayden, Brandon, Ryan, and Kellen, with Kendrie doing some weird lounge-pose on the top of the sofa ... who knows?

The evening was topped off perfectly with birthday cake for Brayden, who turned eight this weekend! (Let’s not even go into the rhetorical “where has the time gone” issue; I feel old enough as it is.)

So, a nice afternoon, a nice evening …….. then just what exactly went wrong?

We woke up the next morning and everyone *seemed* fine ….. but we got our first glimpse of Little Miss Uncooperative at breakfast. Despite the yummy, hot pancakes and fresh fruit that Kristin was serving, Kendrie insisted on eating all of their go-gurt out of the fridge. Literally, all of it. Like five packages. Kristin, I’ll send a replacement box soon!

Still, that wasn’t too terribly bad (more embarrassing than anything, actually.) Then, we went upstairs to get dressed for the circus and ……. Brace yourselves …….. I had packed the dreaded thermal shirt with flowers on it and pink boots for Kendrie. (GASP! --- THE AUDACITY OF MOM!!) Nope, she wasn’t wearing it, no how, no way. And she let us know her displeasure both vocally and with body language and facial expressions. “Pouting” doesn’t begin to cover it.

Truly, I wouldn’t have cared if she had worn the same sweatshirt as the day before, but we had already packed up the suitcase and carried it out to the car, so what started as a simple wardrobe malfunction turned into a classic power struggle between parent and child. With higher stakes, since it was happening in someone else’s home. Actually, that should let Kristin and Mike know how much we like them and how comfortable we felt in their home, since we didn’t just automatically give in. (Or is that my lame justification for allowing Kendrie’s streak of obnoxiousness to continue that morning?? “Hey, Mike, Kristin, we like you so much and are so happy to be guests in your home that we’re going to let our daughter throw a complete temper tantrum for your viewing pleasure!!!”)

So, despite our promise (threat? Same thing?) that she wouldn’t be allowed out of the van if she didn’t get dressed, it was off to the circus we went, with Kendrie in her pajamas. When we arrived, I took Brayden and Kellen inside and told Kendrie she could just sit out in the car until she was ready to get dressed. I’m not quite sure what happened, but about half an hour later she showed up ringside with Blaine ………. wearing the dirty clothes from the day before. So technically, I think she might have won that one.

The circus was a good one, I thought. It was small, a one-ring affair, but it was nice that every seat in the tent was extremely close to the action (a little too close, for some of those people on the other side of the ring during the horse show, if you know what I mean when horses aren’t wearing those little diaper bags.) Many thanks to Camp Sunshine for inviting us as guests and hosting this special event for all the campers and their families. We saw several families from previous Family Weekends, and even two families from my online group; Jacob and Madie.

L-R, Jordan (Jacob's older sister), Madie, Kendrie, CampJack, and Jacob. Notice Kendrie is in the same shirt as the day before .... and you thought I was joking in my previous journal entry when I said people must assume we can't afford new clothes for our children because she wears the same thing over and over and over?!?!

The only downfall to the circus was when some lady asked me as we were leaving … not once, not twice (because I was unsuccessfully ignoring her) but THREE times, “When is your baby due?” Thank you, Jacob’s mom Tiffany, for pretending you didn’t hear that.

Then, I don’t know if it was delayed sugar shock from the cotton candy, or if Jacob slipped Kendrie some of the meds from his steroid pulse this week, but after the show … wow, did it get ugly. (What does that say? Jacob was on steroids and he STILL acted nicer than Kendrie did!)

First, we had a chance to meet Chandler Booth’s family, about whom we have heard so many nice things. Chandlers’ mom had brought sucker-treats for all the kids (thank you, Kim!) and I let Brayden choose hers first since it was her birthday. I had one red, one blue and one green. Easy enough, since blue is Kendrie’s favorite color. Always has been. She ALWAYS picks blue. So Brayden picked red. Big mistake. Then, I announced it was Kellen’s turn to select the movie for the ride home. (It really, truly was. I keep pretty close tabs on that, and even use a calendar to keep track on occasion.) Kendrie wanted to watch “Extreme Primate”. Kellen selected “Spirit”. Big mistake.

It took us so long to get out of the parking lot that people were driving by, assuming we were having car trouble. Then they heard the screaming and just kept on driving. I was still annoyed from the pregnancy comment and quite frankly, had had just about enough from Little Miss Sunshine.

Thankfully, after a few short but painful miles, she focused her energies on pouting out the window, which while ugly to look at, doesn’t bother my ears near as much. So we made it home safe and sound and in one piece. Lucky for her.

The weekend ended on a sad note, when we discovered one of the boys on our list-serve has relapsed. Our thoughts are going out to Victor and his family. Victor had just finished his ALL treatment protocol in October and had recently had surgery to have his port taken out. Now, today, he was back in surgery having a new port put back in, the first step for him as his battle starts all over again. Please keep Victor in your thoughts and if you have a moment, stop by his guestbook and let him know you are rooting for him. He conquered leukemia once …. Let’s cheer him on as he prepares to do it again.

In the meantime, I hope you all have a great week, and that you had a Happy Valentines Day!



My dad has that icky stomach bug that is going around and my mom was a complete freak about me not getting too close to him.


It was MY day to pull a link off of our Disney chain in the kitchen. Hey, wait, did I mention to you that we are leaving for Disney in just six days??? Woo-hoo!

Thursday, February 10, 2005


(308 Days to Go!)

OK, I need to discuss with you guys a serious problem I am having. Could someone please tell me WHEN the second X chromosome that Kendrie has is going to kick in? Puberty? College? EVER???? I’m still waiting for the adorable little girl who wants to play dress up in fairy princess costumes, wear her mommy’s make up and jewelry, and play house with her Barbies for hours. Instead, we’ve got an adorable little girl who hates to wear anything pink, prefers denim to tu-tu-s, and chooses soccer and baseball over dolls any day.

Now, I know you must be thinking, “And just why is that a problem?” Yeah, ok, I have no problems with tomboys, I’ll admit that. But, I’ll tell you why! Because our first child was a girly-girl, so all of Kendrie’s hand-me-downs are girl-ish. Or at least relatively girl-ish. She owns exactly three long-sleeve t-shirts/sweatshirts that she claims are recognizable as “boy clothes”. And she wears them over and over. And over. I’m just waiting for the day this shirt, her favorite red one with the characters on it, becomes too tattered to wear …. It’s going to hit the fan then, let me tell you.

I'm so tired of seeing this shirt I could scream. I’m expecting to open the mail any day now and find an anonymous donor has given us a gift card to Goodwill, because people must assume we are poor as dirt since the girl wears the same three shirts and blue jeans over and over. Never mind the closet FULL of cute clothes with matching tights and hats and jumpers, just waiting to be worn. Also, take note of the Power-Ranger watch that never leaves her wrist. And don’t even get me started on the boots!

If it’s not these boots, it’s her hiking boots. Every single day. The closest she will get to “girl-y” is wearing Brayden’s hand-me-down PINK cowboy boots …. but only when all three of her favorite sweatshirts are dirty and she has to --Heaven forbid!-- wear her long sleeve thermal tee with the pink flowers on it that her Aunt Kelly gave her for Christmas. (Aunt Kelly, what were you thinking??? Pink flowers???)

Then tonight, I saw her and Kellen playing with the action hero (don’t you dare call it a doll!) that she picked from the treasure chest at the cancer clinic the last time she had a spinal tap. Every time she gets to pick a toy, she either picks an action figure, or Matchbox car …. Once, it was a really cool 3-ft Hulk puzzle. So I asked her to pose for the following pictures … and as you can see, the thumbs up and thumbs down pretty much sums up her feelings.

So there you go --- she’s a Barbie girl…… NOT!

OK, maybe it's not a serious problem, but hopefully those of you with tomboys out there can feel a little of my pain. For the rest of you, if you want a journal entry that’s a little more profound this week, I recommend Julianna Banana’s site. Her update today rings true for those of us who work hard to put a positive spin on this leukemia journey. Most days it’s not so bad, but she’s right, some days it is W.O.R.K.

On the cancer front for us, Kendrie had her labs done on Tuesday to see if increasing her 6MP to 125 percent would bring her counts down. They are still not as low as they would like, with an ANC of 2001. But that’s progress and her doctor thinks they will continue to fall in the next few weeks as the chemo accumulates in her system. ANC Goal is between 1000-1500. Other chemo news was the announcement this evening by her 7 year old sister, Brayden; “Hey, you guys can go to bed, I gave Kendrie her chemo tonight.


Wish us luck,


Having a mom and dad who are such anal control freaks that they wigged out when Brayden gave me the chemo tonight. I mean, duh, it’s not like I’ve been doing it every night for months and months and months. Do they think we can’t figure it out???? Geez. I’m 5. Brayden is 7. Add that together and we’re practically a teen-ager. We’re responsible enough for JOBS, and Drivers Licenses, for Pete’s sake, and they simply aren’t giving us enough credit. We do not NEED adult supervision for something as simple and mundane as home-chemotherapy!


Hey, guess what! I was “nominated” to be an Honored Hero for one of the teams taking part in a Leukemia & Lymphoma Society endurance event … the Grand Canyon Hike in May of 2005. (Wow, mom's exhausted just **thinking** about it!) My mom made a new friend this weekend named Ms. Shelley who has taken part in these LLS fundraisers each year. When Ms. Shelley found out that I have leukemia, she asked my mom for permission to give my name as an honored hero for her team …. How cool is that?

Monday, February 07, 2005

Chemo Takes A Dive …. And other Rhyming Words

(311 Days to Go)

So, up at the top of this web page is the personal motto we blatantly stole from someone else and adopted as our own: Chemo Takes A Dive in 2005! My comment afterwards, “unless someone can come up with a catchier phrase than that” actually brought forth one suggestion, from Madie’s mom, who is using this phrase for Madie (also finishing her chemotherapy treatment this year) “Holy Moly, Sakes Alive, No More Chemo in 2005!” which I have to admit, is pretty catchy. Any chance I get to say “Holy Moly” works for me.

Then, I got this great e-mail from my girlfriend Jadine the other night about our motto. Now, Jadine is one of the Pflugerville Greats roaming around CaringBridge, and although her town might have adopted Julianna Banana as their official Canadian sister-citizen, I TOTALLY claim Jadine because I knew her first! Plus, her personality is just as warped as mine, and she stays up just as late as I do, both of these things evidenced by the extremely disturbed e-mails we send one another at 2 am.

Jadine sent me an e-mail about how she’s been trying and trying to come up with a catchier phrase and although she bows down and accepts the fact that my wit is superior to her own, she wanted to offer a few suggestions. (well, ok, that bowing and accepting part wasn’t really in there, but you know what I mean.) So I gave Jadine’s suggestions to Kendrie …. this **is** her site, after all. After perusing them for a day or two, Kendrie returned to me a poem that she has written based on Jadine’s ideas. I thought I would share that with all of you today.


When I was One, I was just begun,
And when I was Two, I was still pretty new.
When I was Three, I was hardly me,
And when I turned Four, I got acute lymphoblastic leukemia.

Wow, that really sucked.

But now I am Five and I’m MORE than alive!
I thrive and survive and I like to hand-jive.

Some day when I’m older I might learn to drive,
And maybe I’ll even attempt to sky-dive.

At the Cliffs of Mexico, I will arrive,
To amaze and impress with my aerial swan-dive.

Computer problems? I can fix that hard drive.
Want a salad for lunch? Here, have some endive.
Tennis, anyone? I have a great back-hand drive.
Planning a surprise party? I can connive.
I’m playing t-ball this year and hope for a line drive.
Hey, want some honey? I’ll go rob a bee-hive.
My dad says I’m NEVER allowed to have a sex drive. (Whatever that is.)
Whew! I’m getting tired! Perhaps I should take five.

But the poem’s not over, let me revive,
To enjoy my great life, I will really strive.

Oh no, this cancer beast, cannot deprive,
The joy and happiness I am determined to derive.

So for now the big question that I must contrive,
Is whether to play the Bee Gees “Staying Alive”
Or Gloria Gaynor’s “I Will Survive”
Naaaawwwwww, I think I’ll stick to my favorite, the awesome -- “Hand Jive”!

Most important of all, as long as I thrive,
Is that Chemo Takes a Dive in 2005!

--by Kendrie (no autographs, please)

Wednesday, February 02, 2005


and what’s *NOT* going on with us

316 Days to Go

So, not much has been going on with us since Kendrie’s doctor’s visit last week. I don’t think I mentioned in her journal that once again, for the 5th month (out of six) since we started long-term maintenance, her counts were higher than they are supposed to be. After the first three months of high counts, they increased one of her medications. Counts went down for one month …. Then right back up for the last two months. So now they’ve increased another of her medications. What a little over-achiever she is. She’s on 125 percent of chemo for her height and weight. Our online group has a new term for kids like Kendrie: they’re “Downeying” … as in, they can process pharmaceuticals faster than Robert Downey Jr. We have to take her in to the base lab for a local blood draw next week to see if the increase is having the desired result n her Absolute Neutrophil Count. So far, all I can tell it is accomplishing is upping the “sibling argumentative” quota around here. (sigh) We can’t even blame steroids anymore, she finished those on Sunday. And the other two kids aren’t on them. Although the dog *is* on them …. does that count???

Not for one single solitary moment have I forgotten, or taken for granted, how well Kendrie has done with her treatment. She still has this lingering cough, so we've had to add yet another medication to her litany of night-time drug cornucopia and oh, yeah, there’s the whole cancer thing, but compared to many of our Caringbridge friends, our life is cake. So to put it in perspective, here is what is NOT going on with us lately:

We are NOT having surgery on Valentines Day to remove our sacrum and any residual germ cell tumor like our sweet Atlanta friend Mary Grace. We ARE praying for the surgeons to have brilliance and clarity that day.

We are NOT thousands of miles from home in NYC, undergoing surgery and chemo for neuroblastoma, anxiously awaiting the day we can travel home, like Kylie. We ARE praying for healing and safe travels for Kylie and her family.

We are NOT anxiously awaiting scan results to find out if the spots that showed up on our lungs during our routine scan last week are indeed new neuroblastoma spots… which would be devastating, like Chandler. We ARE praying for good news from today’s scans ….so many people are praying.

We are NOT in the hospital with relapsed ALL, having our bone marrow transplant TONIGHT, like Meguire. We ARE praying for Meguire to do well during transplant, and for this to be the beginning of a new and healthy life for him. Praying also for his family during this stressful time, as they are separated, in a hospital far from home, and will be for months.

We are NOT limping around town in our new bright orange cast, suffering from a leg fracture after our chemo, radiation and two stem-cell transplants, like Camp Jack. We ARE thrilled to know it’s “just” a broken leg!! When you are a cancer parent and fearing the symptoms indicate a relapse, the news that it’s nothing “more” than a fracture is joyous indeed!

We are NOT home with our family, suffering from relapsed Ewings Sarcoma, facing the reality that time is short, precious and limited, like Stephanie. We ARE praying fervently that Stephanie continues to feel well and enjoys her time with the family who loves her so much.

We are NOT hours from home, in a hospital PICU, feeling depressed and sad, only a few days after experiencing an unexpected “brain bleed” that was so severe it took us off the waiting list for the liver transplant we desperately need, like our online friend Haley. Haley and Cheryl, we ARE praying for Haley’s continued recovery and want you to know we will do whatever we can to help.

We are NOT in the hospital with relapsed ALL, just days out from the transplant that will hopefully save our life, like Taylor. Shawnee, we ARE searching for more (cute!) pediatric surgical masks for Taylor and will keep your entire family in our thoughts and prayers.

We are NOT still reverberating from the news that our ALL came back almost a year after we finished treatment, and are now facing the beginnings of our relapse protocol, like Matthew. We ARE hoping your inpatient chemo trip goes well this week, Matthew, and HUGE kudos to so many of your friends for joining you in the head-shaving Buzz-Off! Great pictures, by the way!

We are NOT one of the two families I know who not only have one child who has relapsed in their ALL protocol, but has another sibling also fighting an ALL battle. People without a sick child say to me, “I just don’t know how you do it” and I get annoyed. But I look at Kevin and Brian’s mom Lisa, and I look at Ashley and Ryan’s mom Robin, and think to myself, “I am so amazed and impressed with how gracefully and tenaciously they handle all this ………. and I just don’t know how they do it.”

And lastly, we are not the parents of Marcus or Carter or Hayley, who I can only assume are struggling with finding their peace here on earth while their beautiful children are waiting for them in Heaven. Or Garrett’s parents, who just today had to pick out his final resting place and make funeral arrangements. We ARE praying for each of these families and can only hope their burdens are lifted by knowing how many lives were touched by their children, and how many care so much for them.

So, if you’re one of the wonderful people who come to our site on a regular basis and check in, and take the time (much-appreciated, by the way!) to sign our guestbook, I want to say thank you. If you only have time to sign one guestbook today, please skip ours and sign one of the sites I have spot-lighted above. We love the messages, too, but I think some of these families need the support a little more than we do right now.



Well, geez, did you read that list above and see how many innocent kids are struggling with this cancer monster? I mean, it’s even more unfair than when Kellen grabbed the last Capri Sun out of the fridge and drank it down like a greedy loser-head before I had a chance to get it!


The fan-tab-u-lous care package my friend Haley sent me (and my stinky brother and sister ... yes, Mom made me share!) in the mail a few days ago ….. but when my mom went to the site to thank her (Haley is waiting for her own liver transplant!) she got some bad news. So now even my best part is tainted a little.