Make A Wish Recap

286 Days of Treatment to Go

First of all, let me say thanks to all of you who posted (often funny, occasionally hilarious --- do you guys actually *read* the guestbook?? You should! Some of you are just plain comical!) notes letting me know that your idyllic family vacations have, on occasion, been less than idyllic. More like spending time trapped in an elevator with that annoying brat from "Full House". You know, *that* kind of fun. From spending a small fortune on meals, to sibling rivalry, to tantrums, to throwing up on Main Street in Disney, thanks for sharing your stories and making me laugh.

I’ve decided the best comparison for our trip is to think of it as similar to giving birth. Going through it, there are moments that stink. Downright painful, in fact. But afterwards, you forget the pain and only remember the good. At least that’s what I’m telling myself, ha!

Our first day we drove to Orlando and checked in at Give Kids the World. Now, I’ll be honest. I have logged on to other Caringbridge Sites, of kids who had recently stayed at Give Kids the World, and read comments by parents who stated they simply couldn't find the words to explain how wonderful this facility is. I’ll admit, I’ve inwardly scoffed, “Then get a thesaurus and start typing!” because, truthfully, I have an insane need to live vicariously through other people. But guess what? After staying at GKTW myself with my family, I simply can’t find the words to explain how wonderful this facility is. Henri Landworth, a Holocaust survivor who immigrated to America with only twenty dollars in his pocket, is the founder. Just typing that sentence makes me feel guilty. I’m proud if I can manage to donate blood every eight weeks and stay caught up on the laundry, let alone raise millions and millions of dollars through hard work and perserverance … and look at the magnificent things this gentleman has accomplished during his life! You can click here if you’d like more information, or buy his book “Gift of Life” (proceeds help the village) for a truly interesting read.

Anyway! I don’t want to give away all the details and secrets and surprises, since I know lots of other families are going soon and I don’t want to ruin the anticipation for them. (Unless you really want to know, so you can plan your trip, then e-mail me privately and I’ll give you a heads up!) Suffice it to say this amazing village, run predominately by volunteers, gives new meaning to “Happiest Place on Earth”. Most likely, I guess, by the fact so many of the workers are there out of the goodness of their heart (duh, isn’t that what “volunteer” means???) Some are “regulars”, and some are like the retired couple we met from Maryland, who drove down in their RV and were staying for a month, volunteering every day. I wish I could explain the feeling it gives you, to witness so many people, working so hard to ensure you and your children are having a good time, helping in whatever way they can. (Even when your kids are intolerable hooligans who are too excited to remember to say "please" and "thank you" most of the time, and these kind people continue to help them anyway!)

The village itself is great, with lots of fun activities planned throughout the day and evenings. We enjoyed simply walking around looking at the whimsical decorations (I guess I enjoyed that more than the kids did), going for fifty thousand merry-go-round rides (the kids enjoyed that more than I did) and taking advantage of the fact the Ice Cream Shop opens at 8am (enjoyed equally by Escoe parents and kids alike! Yes, you really *can* have ice cream for breakfast if you want --- just try that in the real world, ha!)

To try and put it in words is impossible. How can you explain a spirit, a light-heartedness, an atmosphere of frivolity? Imagine living in a carnival and being greeted with a smile and a kind word no matter where you go. Knowing everyone wants you to be happy and goes out of their way to make your life easier for a few days...
I know, I know, you assume that must be what it is normally like in the Escoe household all the time! Sorry to say, you are wrong and our six days at Give Kids the World was a true slice of heaven.

Well, I’m rambling now and probably not making any sense. It’s hard to be entertaining, in a flip, funny way, about the part of our trip that touched my heart the most ….. I’ll be back to my normal, insufferable self soon. But for now, I’ll just post a few pictures from the village and then get on to the Theme Park portion (a.k.a, "Who made the pact with Satan and sold my children's personalities???"-portion) of our vacation in the next journal entry. Thanks again for your guestbook entries; we get a real kick out of hearing from you guys!
Love, Kristie


The view from outside our villa. Keep in mind, these 2-bedroom, 2-bath villas were bigger than some of the base housing Blaine and I have lived in! OK, well, those of you in the military know that's not always saying much, but it was a great set up ---- very generous accommodations!


Another highlight of the trip, getting to meet one of the All-Kids families we know online. This is Kendrie and her new friend Alexis. Alexis' mom and I have become friends and I was so happy to see them walk into the Gingerbread House (the GKTW restaurant) on our first night! Karen, Alexis, Rachel, the whole gang .... we really enjoyed getting to spend time with you guys!!!



This was one of the kids' favorite village activites -- an interactive Dino-Putt-Putt.




Uh, oh .... maybe it's a little too interactive. Where is that roaring coming from?????



"Hey, get me outta here!"




We even have a brand-new Baskin Robbins built near our home, but you can tell by looking at this photo that there's no comparison for fun! Who wouldn't want to eat an ice cream sundae at 8 in the morning, sitting in a big bowl? We loved it! I'm sure our dentist loves it, too.



No, there's no need to glance at your calendar and scratch your head (or any other body part) in confusion. One night each week at the Village is "Christmas" and we got to hang out with Santa for a while, in addition to doing crafts, games, playing in the snow (!) and enjoying ourselves.

More details to follow.............

THANK YOU’S, THANK YOU’S, AND MORE THANK YOU’S

(But probably not the kind you expect)

PART 1 OF OUR MAW TRIP IN REVIEW

(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

"PASSING THE BATON; A REST STOP IN THE MARATHON"

JESSE OWENS! BRUCE JENNER! ---- MICKEY MOUSE?????

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,

Love,
Kristie

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!
*********************************************
KENDRIE’S PERSPECTIVE:

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!

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!

Love,
Kristie
****************************************************
KENDRIE’S PERSEPCTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

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.

BEST PART ABOUT HAVING CANCER TODAY:

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!

"NO FRILLS FOR ME, PLEASE"

(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.”

WHAAAAAATTTTTTTT?????????

Wish us luck,
Kristie
***************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

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!

BEST PART ABOUT HAVING CANCER TODAY:

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?

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.

POEM WRITTEN BY KENDRIE, WITH THE HELP OF MY MOMMY’S FRIEND JADINE:

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)

“WHAT’S GOING ON WITH US”

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.

Thanks,
Kristie
**************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

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!

BEST PART ABOUT HAVING CANCER TODAY:

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.

Conversations with Kristie

(or, Proof Positive that I am Certifiably Insane)

321 Days to Go

Kendrie had her monthly clinic visit to receive the chemo drug vincristine in her port (the device in her chest) on Tuesday. This was an even-more-special day, as every third month, she also gets “sleepy medicine” in her port and they put another chemo drug, methotrexate, in her spine. Yippy-Skippy! (oh, sorry, that little “splat” you felt was the sarcasm dripping.)

Life is indeed different, now that we are only going to the clinic once a month. I’m sort of out of my clinic groove, if you know what I mean. Used to, as I drove the 225 miles round trip each week (sometimes twice a week,) I had meticulous planning and forethought …. the right bags packed with the right snacks, activities, meds, etc. The correct “extras” in the van …. stroller, pillow and blanket, port-a-potty (hey, those steroids at the beginning were vicious!) and enough antibacterial wipes to clean every restaurant booth from here to Atlanta. I had the exits up and down I-75 wired --- I knew which exits had the best restaurants and the cleanest gas-station bathrooms, not to mention the fast food places that sell pop in the Styrofoam cups like I prefer. And, I knew the exact areas where I did and did not get cell reception.

Tuesday, as I made the trip with Kendrie to the clinic, it occurred to me that while some things are the same, many things are different. I made sure to pack a snack bag since she wasn’t allowed to eat before the spinal tap and I knew she would be hungry afterwards ….. but it wasn’t until I was actually packing the bag I realized I no longer have a stockpile of her favorite snacks and drinks. I didn’t even mess with an activity bag, just threw a few books and her favorite stuffed animal in the car. I remembered that I needed to pack a blanket, so I could cover her up for the half hour she is required to lie flat after the spinal …. but couldn’t find the fleece blanket I used to take. Our online friend Lisa from San Diego was kind enough to make and send the kids “rag” blankets last month ---- thank goodness that was close at hand because that’s the one Kendrie insisted on taking. (Lisa, your thank you note is on its way --- the kids LOVE them!) I forgot the pillow entirely. The port-a-potty was thrown away a long time ago. Thank Goodness.

Perhaps the biggest change I noticed, however, was my own mind-set. Kendrie watches movies on the portable dvd player while we’re driving, so I’m left pretty much alone with my thoughts. Used to, I spent most of the two-hour drive preparing myself for the visit; thinking about what procedures she’d be having done and planning my list of questions for the nurses and doctor. On this Tuesday, instead, my mind was really wandering. Just to show you how harebrained this whole leukemia journey has made me, I thought I would share with you some of the conversations (plural!) I had with myself, at various times throughout the drive, and throughout the day:

Kristie: “So, how’s it going?”
Self: “Oh, fine, thanks for asking.”

Kidding. It was more of a meandering, aimless, one-sided conversation that went something like this:

“Wow, look at all the dead kudzu on the trees.” (If you don’t live in Georgia and are unfamiliar with this anomaly of nature, kudzu is a vine-like plant that grows up and over anything that moves at less than 5 mph and chokes the very life out of it. I’m pretty sure turtles and elderly people will both be endangered species here before too long.) “I don’t ever remember seeing kudzu dead like that on the side of the highway. Was it dead last winter when I would drive Kendrie to her chemo appointments? Holy cow, last winter? It’s amazing to me that we’ve been doing this for over a year. I’ll have to remember to check next year to see if the kudzu dies again. Wow, that’s even more amazing, that we’ll still be doing this a year from now. Well, no, technically we won’t. By next January, she should be done, woohoo! Yep, that’s good news. Shoot, there went the exit with the drive up ATM. Damn it. Gotta remember to pull over and put the numbing cream on Kendrie’s port and her spine before too long …. what was the exit with the Chick-Fil-A again??? That way we can grab some lunch since it’s almost 11:00 …. no, wait, she can’t have anything to eat until afterwards. Just who schedules a five-year old to be NPO for an afternoon spinal? Hey, look, there’s a shoe in the middle of the highway. Who *does* that, anyway? Why would anyone throw a shoe in the middle of the road? Are they just driving along and decide they don’t like these shoes anymore? And why is there always only ONE shoe in the road? Where’s the other shoe? Crap, there goes that other exit I wanted. Boy, I’m really talking to myself a lot today … is it considered talking to yourself if you’re doing it in your head? Isn’t that actually considered thinking? I’ve got to remember to bring that blanket into the clinic with me, and my camera, too, since Catie and Mary-Grace will be there. I wonder if we’ll be able to go to dinner with them today. If we can’t, maybe I can order pizza from the new Pizza Hut Delivery Location that just opened by our house. Sure wish they had opened that thing back in our Induction Days, when all Kendrie would eat were those breadsticks. Wow, remember how obsessed she was with those breadsticks? Speaking of eating, where is that exit with the Chick-Fil-A? Where the heck did I put the numbing cream?”

And so on and so on.

Then, I had another bizarre conversation with myself while Kendrie was getting her spinal. They had her curled over on her side, fixing to start, while one nurse held her down and the other nurse made sure the meds were ready. The nurse-practitioner, who is performing the procedure, sits behind Kendrie and I sit in front of her face, trying to be a soothing presence, while at the same time not block the big screen that is showing Scooby Doo 2 (total crap, by the way.) The child-life specialist comes in and introduces me to a child-life intern, asking my permission for them to stay and watch the procedure. So there is a pretty full room, and Kendrie has started crying like she usually does with the “sleepy medicine” (some kids report feeling sort of drunk or giggly when they get it …. If this is how Kendrie acts when she gets drunk, she will be ostracized from every sorority function, as she is a mess.) As a mom, of course, it breaks my heart to see her upset and to hear her asking me, in that pitiful, slurred voice, “Are they done yet?” when I know they haven’t even started. So, as is our usual routine, I started rubbing her forehead and singing “You are my sunshine, my only sunshine” to her, in a voice I hope is comforting and calm. Thank goodness Simon Cowell isn’t there, is all I can say about it. Maybe because this was her first spinal in three months and I had sort of “forgotten” about them, maybe it was remembering exactly what we were doing to her, and why, and the fear of a relapse diagnosis each time she gets a spinal …. I don’t know …. But all of a sudden I started crying. Then my conversation with myself went something like this:

“Oh, for God’s sake you loser, pull it together. You have to be stronger than this for Kendrie, it’s certainly not going to help her any to see you cry. Why are you crying anyway, you dork?? Things are fine, she is fine, things will BE fine. Besides, that intern is going to see you cry and think you are a bonehead. So? What do I care what some stupid college intern thinks of me, anyway? Does her kid have cancer?? How would she know? Now why are you calling the intern names? Is it HER fault you are a cry-baby loser??? For Pete’s sake, pull it together woman!!!”

You know, I go along fine for months at a time, then wonder if the staff at Scottish Rite is surreptitiously calling child-welfare on me. Or perhaps Bellvue.

Then, like that isn’t proof enough of what a weirdo I’ve become (my long-term friends will perhaps raise an eyebrow at the past tense of “become”) let me tell you about the third and final conversation I had with myself at dinner. Well, no, it wasn’t the final conversation of the day … I still had the ride home from Atlanta to get through, but it’s the final conversation I’m going to share with you!

We had really lucky timing on Tuesday and had clinic appointments on the same day as two of our friends. Catie and Mary-Grace and Kendrie were all finishing up about the same time, so we decided to go out to dinner together. I’ve said all along that one of the perks (if you can call it that!) of having a kid with cancer is meeting other families going through the same thing. It’s a bizarre little fraternity, but we’ve met some amazing people this way.


"Kendrie and Catie, photo taken 01-25-05"


So we went to a local restaurant, than sat around talking afterwards. Mary-Grace’s dad Todd won all three girls stuffed animals from “The Claw” which pretty much made him the hero of the hour (thanks, Todd!) and the three moms were visiting about some of the other mutual friends we have all made. Mary-Grace and Catie both have lots of scheduled inpatient chemo, and have met lots more families, and know many more patients personally, than we do. So as we were talking about how they knew this family, or how they knew that family, and how everyone was doing, the following words actually came out of my mouth: “In a weird way, you guys are lucky to be inpatient so much. We haven’t been inpatient since diagnosis and I haven’t met anyone.” A few seconds later, when my brain caught up to my mouth, I wondered ….. holy cow, did I really say that?????

So I spent the next few moments vacillating between the self-recrimination of “You Idiot! What a completely thoughtless …. Not to mention STUPID, thing to say!!!” and the other thought process going on inside: “How odd is it that I’m sitting here with these two moms that I had never met, or even heard of, six months ago, and under different circumstances would never meet. Between the three of us, our kids have almost three years of chemo under their belts, brain surgery, shunts, radiation, more surgery planned next month, scans, MRI’s, more oral meds than any of us can count, spinal taps, bone marrow aspirations, one extremely undignified rectal exam earlier in the day (I won’t mention names, but let’s just say that a certain 2-yr old handled it with much more poise than *I* would have!) and yet, I’m having a perfectly lovely and wonderful time!”

Like the chorus of this song says …..
“But we're never gonna survive, unless...
We get a little crazy
No we're never gonna survive, unless...
We are a little...”
The lyrics might be dark, but the chorus is right on!! :)

So, maybe I’m a little crazy. (Perhaps the word “maybe” is un-necessary!) But if talking to myself and having inane conversations in my head gets me through it, which in turn gets Kendrie through it, then so be it. I feel blessed to have such wonderful people to get a little crazy with. Jenny and D.D., (Todd, too!) thanks for a wonderful meal ---- we think the world of you!

Love, Kristie

####################################
KENDRIE’S PERSPECTIVE:

WORST PART OF HAVING CANCER TODAY: Well, it’s day 3 of Steroid Week, which loosely translates into “start crying the minute I wake up, until Mom gives up convincing me to go to school, so go back to bed, and then when I finally do get up, lay around on the sofa all day eating my weight in American cheese slices.” Hey, hang on …..

BEST PART OF HAVING CANCER TODAY: Same thing. Especially the part about the cheese.

KRISTIE'S PERSPECTIVE: But did she mention the 45-minute tantrum she threw yesterday because no one would play "Break the Ice" with her??????

HAIR TODAY, GONE TOMORROW, AND OH, WAIT, HAIR AGAIN TODAY!!!

Part Four of a Four-Part Series

Aka; Kendrie; the Do’s of Time


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



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





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










Dare I say the images have an eery similarity???? Are you flashing back to your Saturday nights, laying in bed with the sheets pulled over your head, sweating, terrified there are sleestaks hiding in your closet, after watching Land Of The Lost re-runs all morning????

Then there was my mom, the eternal buster of the imagination balloon, who wanted to know why these people (Marshall, Will and Holly, in case you've forgotten their names) were "plunged down a 1000 feet below" (although I swear the words were: "stranded in a valley deep below") and yet never got their clothes dirty or needed haircuts??? Geez, mom, way to ruin the pretend for the rest of us!

And so ends our journey through Kendrie's "Hairstyles of Leukemia". I hope you enjoyed the trip!!!

Love, Kristie

"Marshall, Will and Holly,
On a routine expedition ....
met the greatest earthquake,
ever know ...................."
******************************************************

KENDRIE'S PERSPECTIVE:

WORST PART OF HAVING CANCER TODAY: Isn't it obvious? That I have a mom who would compare me to a youthful neanderthal creature from a Saturday morning cartoon show so campy that there are actually cult internet sites devoted to it's following???? Oh well, at least she didn't compare me to the sleestaks.

More serious and personal (ie, boring and self-involved)

On a more serious, personal note, I’d like to ask all of you for some good thoughts for Blaine tomorrow. I know I don’t talk about it a lot (or, maybe I do and I’m so shallow and self-centered I don’t even realize it) but for those of you who are perhaps recent visitors to our site, and who aren’t familiar with our family’s history, let me share a bit of it with you. (those of you who know us, yawn and bear with me, I’ll get to my point in a minute!)

In Feb of 2003, Blaine was diagnosed with cancer. During a routine dental visit to get his wisdom teeth removed, a dentist discovered something abnormal on an x-ray. Further testing revealed what is technically called a “poly-morphous low grade adenocarcinoma”. (whew!) Basically, a malignant tumor that had grown and grown until it completely filled his sinus cavity.

Prognosis was excellent, but to remove the entire tumor (which the doctors estimated had been growing for fifteen to twenty years!) surgeons also had to remove Blaine’s gum, teeth, uvula, soft palate, hard palate and cheekbone. You’ve heard the phrase “I need (blank) like I need a hole in the head”??? Well, there you’ve got it. Blaine, literally, has a big hole in his head.

A few weeks after the surgery he began the long, tedious process of being fitted for a prosthetic device called an “obturator”; AKA, The Retainer From Hell. This device allows Blaine to eat, drink, talk, etc, like a normal person. It’s also awkward, ill-fitting, painful at times, and a complete pain in the ass to upkeep. He hates it, but is so grateful to have it. (Hey, kind of like how cancer-parents feel about leukemia treatment!) Anyway, thank goodness the doctors told him that after remaining cancer-free for one year, he could consider having permanent reconstructive surgery and would be able to ditch the much-hated obturator. He began counting down the months.

At the 8-month mark, Kendrie was diagnosed with leukemia. Obviously, Blaine’s reconstructive work was put on the back burner, although the process required to keep the obturator fitted, and in working condition, is never ending. Blaine has spent more time in the dentist’s chair getting that thing tweaked every time a piece breaks or it rubs his mouth the wrong way or a wire gets bent .. . he went without teeth for about six months while they tried to fix it …. it's rubbed scar tissue that has looked "suspicious" that he's had to have biopsied ... he has to remove it and clean it after every meal or snack (and you thought flossing in a public bathroom was embarrassing; try taking out part of your head and cleaning it in the sink!) … has to drive six hours round trip every week or so to see the dentist …. Well, you get the picture.

ANYWAY!!! Once Kendrie hit the one-year mark in her treatment and we could see that things were going well for her, we decided it was time for Blaine to get the follow-up work he so desperately needs to improve his quality of life. ---Enter the Air Force Medical Institution, a beaurocratic process otherwise known as “Tricare Insurance".

Blaine’s surgeons and dentists at Ft. Gordon Army Medical Hospital in Augusta, Georgia, are fabulous and I credit them with saving his life (or at the very least, his vision) when the cancer was discovered. However, the extreme, extensive scope of reconstructiveness (is that a word?) of this type of surgery is beyond what they can do. Blaine’s primary surgeon recommended Blaine go to Seattle, WA, and have a specific doctor there perform the surgery, a doctor who is one of the leading experts in this field of oral/maxillo-facial/reconstructiveness. In fact, this guy flew to Augusta last year and has examined Blaine already and agreed he can do the surgery. But, in an attempt to cut costs, the Air Force wanted to try and find someone more local to perform the operation. As a taxpayer, I appreciate that. As a wife, UUUGGGGHHH!

So first he was told to see a plastic surgeon in Atlanta. It took over a month to get an appointment, then the first appt was cancelled because the doctor didn’t have the records he needed, and then when he finally met with Blaine, he took one look at him and said, “Why on earth did they send you to me? I can’t do this. You need to see my colleague at the Reconstructive part of the other facility.” OK … another month for another appointment. Then, when Blaine finally saw *that* guy, he said, “You do know that I do BREAST reconstruction, right?” Blaine figured “great, they can put a boob on my head and I’ll just blow my nipple every time I get a cold!” In fact, this doctor’s exact comment to Blaine was, “Are you actually aware how major your defect is? You are lucky to be alive.” Well, thanks for the warm fuzzy, Mr. Boob-guy.

Needless to say, although the Air Force STILL wouldn’t send him to Seattle to see the doctor we wanted, they did agree to send him to MD Anderson in Houston, TX. As luck would have it, after getting an appointment, getting his records and cat scans and MRI’s ready, and flying to Texas for the appointment last week, the doctor he was supposed to see was out of the office because his wife had a baby the night before. That’s some great timing on our part, wouldn’t you say? So, Blaine was examined by a resident whose exact words were, “I have no idea if we can do this or not.” Wow, that’s really encouraging, isn’t it? He called the other doctor, who responded with a bit more enthusiasm, “Well, I don’t know either, but we’re sure willing to give it a try!” Um, yeah. Somehow, NOT the level of confidence we were hoping for.

So finally, after foot-stomping and yelling and outrage (on my part) and a calm but decisive discussion (on the part of Blaine and his doctor) they agreed to fly him to Seattle for a consultation with the expert. And that’s where he is now.

His appointment is tomorrow and it would mean a great deal to me if you would all think really, really positive thoughts that this doctor can answer our questions and say with confidence that he has performed this exact surgery before, many times, with great results. Is Blaine’s life on the line? Shoot, no. But if it goes well, the surgery could bring about a drastically improved quality of life. And if it were to go badly, we’d be right back at square one, with an even BIGGER hole in his head and lots more dental work to face. So we are very hopeful, and a little bit nervous, since we’ve pretty much put all our faith in this guy and can’t see anyplace else to go if he turns Blaine down.

That’s probably way more information than you wanted or needed, but I felt compelled to write it all down. If you’re still reading, thanks for sticking with me through the entire journal entry! In light of everything Kendrie has gone through since her diagnosis, I have to admit that Blaine has gotten the short end of the stick. Instead of being the supportive, empathetic, compassionate wife that I always should be, I have pretty much left him to fend for himself in his own treatments and rehabilitation process. So maybe this public plea for good karma is my way of making it up to him!

I’ll keep you all posted on how it goes.

Oh, and don’t forget to check back and see the fourth and final installment of “Celebrity Hairstyles for Kendrie”
Thanks for stopping by, and especially for signing the guestbook. We read it every day and love seeing messages from friends, both old and new.

Take care,
your long-winded friend,
Kristie

More Hair Stuff

AUGUST 2004 -- TEN MONTHS INTO TREATMENT


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



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

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SEPTEMBER 2004 -- ELEVEN MONTHS INTO TREATMENT


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



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OCTOBER 2004 -- ONE YEAR INTO TREATMENT



Yep, those hats are G.O.N.E. !!! Check me out, baby -- Farrah Fawcett's got Nothing on me! (wait, who's Farrah Fawcett?)

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DECEMBER 2004 -- FOURTEEN MONTHS INTO TREATMENT



At this point, I thought my hair was so long that it upset me when some boys at school said I looked like a boy. I like to wear it spiky sometimes, but not every day. Do you think I'll actually have to get it cut at some point in the future?????

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OK, mom says there is one more celebrity comparison photo left, but you'll have to come back later to see it. I guess this is sort of like one of those "cliffhanger-who-shot-JR" sort of things --- so check back in a few days!!!

Love, Kendrie

Hair Part 2

MARCH, 2004 -- SIX MONTHS INTO TREATMENT


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



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


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



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

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APRIL 2004 -- SEVEN MONTHS INTO TREATMENT


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



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

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JUNE 200 -- EIGHT MONTHS INTO TREATMENT



This is what Mom officially calls my "Duckling Fuzz" stage. All I know is Whew! Am I glad to have hair back!!

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JULY 2004 -- NINE MONTHS INTO TREATMENT



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



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JULY 2004 -- NINE AND A HALF MONTHS INTO TREATMENT



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


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

Hair -- A Year in Review

337 Days to Go

Well, so many people have commented, both online and in person, on the speed at which Kendrie's hair is growing, I just thought I would give you a little timeline pictorial of "The Year in Review" -- A Hair-Raising Experience, To Say The Least. (apologies in advance if you're on dialup!)

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SEPTEMBER 2003 -- ONE MONTH BEFORE DIAGNOSIS:


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



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

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NOVEMBER 2003 -- ONE MONTH AFTER DIANGOSIS


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



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

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DECEMBER 2003 -- TWO AND A HALF MONTHS INTO TREATMENT


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


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

to be continued ....

“Proof that Hell exists on Earth” and/or "Why we hate steroids”

342 DAYS TO GO

(THANK HEAVENS ONLY 55 DAYS OF THEM WILL BE ON STEROIDS!)


In case you couldn’t guess, it’s Steroid-Week (otherwise known as “Has anyone seen our normally well-behaved daughter and who is this freak who has taken her place-Week”) at the Escoe household. And if you’re one of those people who understands better when you have a picture to see, let me explain it to you this way:



"This is me"




"This is me on steroids"



Yes, yes, I admit I blantantly stole this idea from Julianna Banana's dad Terry, when he used the This-is-me-adorable-kitty-cat and This-is-me-on-steroids-ROARING-LION to describe their own situation a few months ago. Truly, parents of children on steroids anywhere can relate.

Perhaps an even better example is what happened at dinner a few nights ago, when we were serving up an exquisitely well-balanced and nutritious meal of grilled cheese sandwiches and left-over macaroni & cheese, and after Kendrie demanded her good-sized portion of mac & cheese I commented there wasn’t much left. Brayden said, “But I want some, too” and I turned to ask Kendrie if I could share some of hers with Brayden. She, I swear I am not making this up, started leaning over her place at the dinner table, arms surrounding her plate and bowl like a paranoid gambler in Vegas protecting his chips at the craps table. I just sighed, and turned to see if I could somehow scrape another serving out of the bowl, and the next thing I heard was Brayden ….. “Ewww, gross! Mom, she’s licking all her macaroni & cheese and then putting it back in her bowl so she doesn’t have to share!!!”

And in case you think greed at the dinner table is the only ugly side effect from steroids, let me also share with you a story about our neighborhood friend, 4-yr old Nicholas, who is in Kendrie’s class at school. They hit it off as chums right away at the beginning of the school year and we’ve gotten together a few times as families to let the kids play. This Christmas, while we were home visiting my parents, Kendrie announced to my mom that Nicholas was her boyfriend. Oh really??? That was news to Blaine and me.

Fast forward to yesterday, when we were watching Nicholas and I could tell throughout the day they were starting to perhaps get on each other’s nerves a little. It was the third day in a row they had been together, so that’s understandable (hey, I know *married* people who can't stand to be together three days in a row), but suddenly I heard screaming and yelling. Being the pro-active, involved parent that I am, I sat in my computer chair and waited for one of them to come to me and tell me what was wrong.

Nicholas shows up, yelling, “She pinched me ….. really, really hard!” ( think it was the *really, really hard* part that bothered him) immediately followed by Kendrie screaming, “He started it by punching me in the port!!!” (she has figured out that any intentional horseplay that involves her port area really makes me crazy and uses it to her full advantage.) I had no idea who actually did what to whom, so I told Nicholas to come with me and sit in the living room for a few moments, and told Kendrie to lay down on her bed until she could behave properly. Oh. My. Gosh. Did the dam ever break! She was laying on her bed, thrashing about, kicking, flailing, screaming all the while:

“You don’t love me anymore!”

”Nicholas started everything!”

“You care more about Nicholas than you do me!”

“I don’t want to be in this family anymore!”

and the ultimate, most painful threat of all,

“I’M GOING TO FIND A NEW BOYFRIEND!!!”

Like I said, thank heavens only 55 days of the upcoming year will be spent on steroids.
Love,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

“Taking those little green pills that my mom says make me cranky. I don’t think they make me cranky ………….. I just think my mom DOESN’T LOVE ME ANYMORE!!!”

BEST PART ABOUT HAVING CANCER TODAY:

Hey, this is Kristie talking ---- the best part is that the kids went back to school today and I’m betting ten to one that Kendrie is so happy to be back with her friends (and yes, even back with her boyfriend Nicholas) that she is pleasant and happy and distracted all day. And tomorrow is the last day of steroids!!!

New Years Day 2005

(348 Days to Go)

New Years Day --- a New Year, a Fresh Beginning, a Bright Start, the Launch of an Unsullied Time …..awww, who am I kidding? I’m going to be trying to lose those same 20 pounds and doing the same old laundry as always. But today certainly *seems* optimistic, doesn’t it?

Thanks to all of you who checked in on us during the holidays. I certainly hope you all had a wonderful time, no matter how you chose to spend them. (It would be un P.C. of me to actually come right out and say the words, but at the risk of offending anyone …… Hope your CHRISTMAS was MERRY!!!)

We had a really nice time with our family and friends in Oklahoma and Texas and actually survived the all-night drive in both directions without any major meltdowns (mine *or* the kids). For the record, though, just in case it helps anyone in the future, there is apparently not one single McDonalds with an indoor play-place anywhere in the entire state of Alabama. We only know this because we were driving through Alabama, at dinner time, with whiny, cooped-up kids, in the rain. Somehow, letting them run through the parking lot at the Pilot gas station wasn't quite the same thing.

Otherwise, though, no mishaps. The kids loved spending time with their cousins and were completely bummed to leave. Here is a picture of all of them clowning around one night at a walk-through Christmas light display that we try to attend every year when we are home:



Yeah, you should see the looks my sister and I get when we go places with this motley crew. They are fun, though! Usually. When they're not fighting or throwing mud on one another.

As far as the holiday itself, everything there was fine, too, although the lesson we learned this year was to request that in the future, our kids not be given **ANYTHING** that has more than one single piece to it. Not so much Kellen and Kendrie, but Brayden was like a tornado on Christmas morning, not only opening the gift, but also opening up whatever *was* the gift in a span of seconds. We looked away for only brief moment and suddenly she had her new Digi-Draw, new Scrapbook kit, new Grow-A-Frog kit and new make-up kit all opened and scattered everywhere, amid the bows and boxes and bags. When there are seven kids between the ages of 2 and 9 all ripping frantically into their presents, lets just say my anal-control-freak personality gets a little wound up. (For the record, the damage to the Grow-A-Frog was unsalvageable …. Those poor tadpoles never stood a chance.)


The calm before the storm. :)

Anyway, despite the chaos, or perhaps *because* of it, we had a great holiday, and hope you all did, too. Now we face forward, ready to get this New Year started. Not that I’m wishing our life away (ok, maybe just a little) but I am so hopeful that at this time, NEXT year, I am writing about our new life WITHOUT CHEMO. Like the line above says, only 348 days to go!

Speaking of chemo, we are driving up to Atlanta on Monday for Kendrie’s monthly appointment. The kids will still be out of school, so it should be fun with all of them along for the ride. (I’m actually not being toooooo sarcastic …. They got new movies for Christmas so thanks to the genius that invented the portable DVD player, the ride up and back should go smoothly.) She's had a cough for a few days (running around that stupid parking lot last night probably didn't help much, do you think?) Also, wish us luck that her counts are good. Actually, wish us luck that her counts have come *down* a little. They’ve been high ever since she started long-term maintenance in August and in the back of my head I have the worry that the chemo isn’t strong enough. Silly, perhaps, but what would I do if I wasn’t worrying?

Well, darn it, I already broke New Years Resolution #2 with that sentence. Here is my list in its entirety:

NEW YEARS RESOLUTIONS, 2005

1. Skip more. (See journal entry of Dec 4th, 2004)

2. Worry less. (See journal entry of Dec 12th, 2004)

3. Lose 20 pounds. (Do you realize that I’ve had the same resolution for the past twenty-five years and have never lost a pound? In fact, at this rate, I should weigh NEGATIVE 400 pounds or so!)

4. Don’t wait until 10 pm on Jan 1st to come up with lame list of resolutions.

That about sums it up. If you guys have any suggestions for resolutions, maybe I could just piggy back onto yours ….. then I wouldn’t feel so un-ambitious!

Enjoy what is left of the holiday weekend and I’ll check back in after the appointment on Monday,
Love,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

Well, I sort of was goofing around during dinner and didn’t eat much and now I’m really hungry but my mom won’t let me have anything to eat until at least an hour after my chemo …. All these silly food rules are putting a damper on my ability to put away the last of the Christmas candy before Brayden and Kellen get to it!

BEST PART ABOUT HAVING CANCER TODAY:

I got some of the COOLEST Christmas stuff from people that my mom has met online! I know, I know, it’s not about the gifts ….. well, yeah, when you’re five, it IS about the gifts! My mom wants to take some photos before I can tell you about them but they were waaaaaaaaaayyyyyyy better than the lame Grow-A-Frog thing that Santa brought!