EIGHT DEGREES OF UGLY

139 Days to Go

We drove the kids to Atlanta on Wednesday in an attempt to salvage this week that we *should have* been at the beach. There are signs I’m becoming slightly less selfish (although not markedly so) as instead of feeling 100 percent sorry for myself, my family and the vacation that wasn’t --- I have had a few moments' concern for the poor homeowners whose condos --that we would have been staying in-- were damaged by the storm. And for the local economy that relies heavily on tourism, and for the good folks at The Lighthouse Retreat who work so hard all year to provide these amazing retreats for cancer families …. I’m sure I’m not the only one railing at Mother Nature.

So anyway, we spent yesterday and today doing fun things in Atlanta ….. Yesterday was an afternoon at American Adventures Amusement Park, a Six Flags park designed for kids under 12. It was a lot of fun, and overall, a very successful family outing. There were a few moments, however (when are there not, with this family???) …. Eight, to be exact. I’ve listed them below as the “Eight Degrees of Ugly”:

Right off the bat, first thing, the conversation between Blaine, the driver who was content to circle the lot twelve times looking for a space, and Kristie, the lazy passenger who wanted to park as close to the entrance as possible, on whether or not the space between those two day-care buses was actually big enough to constitute as a real parking space for our mini-van: Only mildly ugly.

The reaction Kristie had when she realized that although she was successful in bullying Blaine to park in the space, she was actually too fat to fit out the passenger door because it would only open a few inches thanks to the damn daycare bus next to it. Then, the even worse reaction she had when she squeezed her fat ass between the van and the day care bus, but wasn’t successful enough in sucking in her gut to prevent the streaks of dirt from running all along the front and back of her t-shirt: Pretty ugly.

Spending four hours riding rides, playing arcade games, and enjoying “The Foam Factory” with our family: Only a little bit ugly because it was hot as Hades and all those day-care kids made the lines too long. But mostly not ugly and fun.




Kristie’s discovery that she no longer has a stomach of steel and riding the tilt-a-whirl, swings, and pirate ship all in a row was perhaps not the brightest idea she has had in a long time: Fairly ugly, or, to quote Blaine, “You look like you’re going to hurl.”




Paying $18.77 for two slushies and three Cokes: slightly ugly.

The attitude Brayden copped when she realized that despite being 13 months older than Kellen, she is one inch shorter than he is ….. and what a crucial inch it is …. allowing him, at 54 and a half inches, to drive the bumper cars, but relegating her, at 53 and a half inches, to the undignified position of sidekick: Very, very ugly. This is what pouting looks like in the flesh, in case you are unaware:






Getting to the prize redemption counter in the arcade and discovering that thanks to one lucky spin on a defective game, one kid has 200 tickets more than the other kids: moderately ugly.

After riding rides, playing games, drinking slushies, and ripping through the foam factory all afternoon, the fact that my unappreciative kids were disappointed that we weren’t taking them to the White Water Park next door: Not as ugly as my head exploding during the “Can’t you just be grateful for what you’ve been given today, instead of always wanting more, more, MORE speech?!?!?!?”

But in reality, those eight moments were merely a blip (albeit, eight annoying blips) on the radar screen of our day and we had a good time. Afterwards we stayed in a hotel with a pool and had dinner at a Spaghetti Warehouse, so all told, it was a pretty successful day.



Then this morning, we got up and drove to Turner Field to take part in the kick-off of the 2005 Major League Baseball Commissioner’s Initiative for Kids, and grand opening of Tooner Field, before the Braves game. Here is a little background information from the CureSearch website:

Commissioner Selig to Help Launch 2005 Program on Thursday, July 28 at Turner Field

NEW YORK (July 27,2005) Major League Baseball is once again teaming up with Ameriquest, the Official Mortgage Company of Major League Baseball, to present The 2005 Commissioner’s Initiative For Kids courtesy of Ameriquest. Introduced in 2004, the program is designed to provide tickets to children who otherwise might not have an opportunity to attend a Major League Baseball game. In addition, the program helps raise awareness and, through a very generous $1 million donation from Ameriquest, funding for Boys & Girls Clubs of America (BGCA), the Official Charity of Major League Baseball, and CureSearch National Childhood Cancer Foundation.

“The 2005 Commissioner’s Initiative For Kids courtesy of Ameriquest” gets underway in Atlanta on Thursday, July 28th with a special celebration at Turner Field. Baseball Commissioner Allan H. (Bud) Selig and his grandchildren, Atlanta Braves Chairman Terence F. McGuirk, several Braves players and their families, youth from BGCA and CureSearch National Childhood Cancer Foundation and the Cartoon Network’s Johnny Bravo will be on hand to help open “Tooner Field,” a new children’s play area located at the ballpark. As part of “The 2005 Commissioner’s Initiative for Kids courtesy of Ameriquest,” the Braves have made tickets available to local community and charitable organizations for that afternoon’s 1:05 p.m. game vs. the Washington Nationals.

Game-used bases, team-autographed commemorative home plates and lineup cards from each ballpark will be auctioned off at a later date to raise additional funds for BGCA and CureSearch National Childhood Cancer Foundation.

In-stadium celebrations are planned at each Major League ballpark throughout the month of August to commemorate “The 2005 Commissioner’s Initiative For Kids courtesy of Ameriquest” program and highlight the importance of BGCA and Cure Search National Childhood Cancer Foundation.

“On behalf of all the families impacted by childhood cancer, we are very proud to once again be a beneficiary of the Commissioner's Initiative for Kids and are deeply grateful to Ameriquest and Major League Baseball for their incredible generosity,” said Paul T. Burke, President and CEO, CureSearch National Childhood Cancer Foundation. “This promotion will raise public awareness that childhood cancer is the number one disease killer of children in the USA, claiming the lives of more children under 20 than any other disease. It will also provide much needed funds to advance collaborative research and help us reach the day when every child with cancer can be guaranteed a cure."****************************************************

SO! The gist of it was that a very large group of cancer kids and their families would be on hand, along with a very large group of kids from BGCA, for the ribbon-cutting ceremony of the new Tooner Field interactive play area for kids at the ballpark. One or two VERY SPECIAL cancer kids would even get to go up on the stage and help cut the ribbon ---- Hmmmm, can you think who one of those special chosen kids might be? Can you think of how nice it was for Brandon’s mom Kristin to ask one of those kids, and make such an offer? Can you think of what it means to be five and have thousands of grown ups, kids, Hank Aaron, baseball players, and dozen and dozens of tv crews and cameras to be there, looking at YOU? Can you imagine who completely chickened out and spent the entire ceremony standing on a trash can in the back of the crowd????



That’s ok, though, our friend Will came through at the last-minute and stood in for Kendrie, and then we all got to be part of the very first group of kids to go through Tooner Field, which was pretty cool, except it was a madhouse in there with all the dignitaries and official PR people and tv people and camera crews. And I thought *I* was vicious when it came time to get photos!

Then we had free tickets to see the Braves game, which was also cool. Well, maybe “cool” is the wrong word, considering it was about 139 degrees in the shade. Which fortunately, we were sitting in, because you know the people in the sunny sections were roasting at about 160.

We really enjoyed getting to visit with some of our Camp Sunshine friends, and seeing some of the friends we were supposed to have gone to the beach with this week. Although it wasn’t a week of lying in the sand and relaxing, we still got to visit with friends, which was the best part.




We’ve got one more fun thing planned for this weekend, and I’ll update again next week. Then, school starts on Friday, can you believe it? I hope you all have a great weekend and want to thank you for checking in and continuing to keep Kendrie and our family in our prayers. We are getting closer and closer to the “first” finish line of this race and appreciate the support of all of you!

Take care,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Hey, ok. I *know* I told my mom and dad I wouldn’t chicken out at the last minute during that ribbon cutting ceremony ….. but I had no idea what the PRESSURE would be like! Do you guys want me to have a nervous breakdown before I even start kindergarten????

BEST PART ABOUT HAVING CANCER TODAY: Getting to go the Braves game (because I’m an expert on the game, you know, since I played t-ball this year) and being one of the first kids in Tooner Field. Now that was pretty neat! Thanks, CureSearch and MLB!

A MATTER OF PERSPECTIVE

141 Days to Go

I find it hysterical that at a beach/lake/water-park place we visited in Ohio, with all kinds of slides and monkey bars and play equipment in the water, my kids enjoyed digging holes best. I’m not quite sure what type of architectural masterpiece they were going for, but I’m pretty sure it involved a moat and someplace for the plastic alligator to rest.




My perspective: Look at how creative my children are and how nicely they are playing with their little friend Anna.

The lifeguards’ perspective: Those damn kids got out every damn shovel and pail on the beach. It’ll take me HOURS to clean up tonight!




My perspective: Look how beautiful my son is.

Lifeguards’ perspective: Wow, doesn’t she ever feed that kid?





My perspective: I love to see my children learn about nature, even with an act as simple as letting wet sand slide through their fingers and enjoying the messiness and happiness of being a child.

Lifeguards’ perspective: First of all, Rogaine, anyone? And secondly, she dragged out all those buckets and shovels and now she’s happy playing with mud? I swear I am never having kids.





My perspective: Our last photograph of the day, showing us enjoying our vacation with all our friends in Ohio. They are such a cute group of kids!

Lifeguards perspective: Thank God, I think I heard that lady say it was the last picture of the day. Maybe that means this group of kids is going home now!





Kendrie’s perspective: Yep, that lake yesterday was fun. But this water park today? And particularly this wave pool? This is where it’s AT, baby!

Lifeguard's perspective: Ma’am, you cannot stand at the exit to the lazy river, trying to get a photo of your child, without being knocked down by the waves. If I have to blow my whistle at you again, I will remove you, and your zoom lens, from the pool.






Kendrie’s perspective: Wheeeeeee! Can I do this again??? Fun, fun, FUN!!! I bet if I take off my shoes and wear only my socks, I can go down this slide even faster!!! Wheeeeee!! Hey, wait, it’s getting dark. Does that mean giant mutant bugs will be coming out soon?

Kristie’s perspective: This isn’t really a perspective as much as it is a piece of advice. If you ever find yourself in a public park after dark … don’t. Beetles the size of Texas will attach themselves to your child’s foot and you will have to deal with a hysterical 5-yr old, try to figure out some way to get the beetle off her sock without knocking her to the ground (which I managed to do anyway), a 7-yr old who is, I swear, about to hyperventilate from fear of the giant beetle, an 8-yr old who starts crying just because everyone else is …. And I thought taking Kendrie to use the port-a-potty in the dark would be scary, geesh. I am not exaggerating, though. That mutant-freak bug should have been in a museum somewhere. My girlfriend Kim will vouch for me! But at least she and her kids remained calm!

One last perspective:

The little, bitty, stubble-like hairs I saw coming from the chest of the man at the public pool yesterday … when I realized he must shave his chest and was a few days past due … very funny looking.

The little, bitty, stubble-like hairs I saw coming out of Kendrie’s scalp yesterday, in between the huge bald patches she has …. Beautiful.

We are making the most of our last full week of summer and taking the kids to do a few fun things these next couple of days. I’ll update, and include pictures (imagine that) in a few days. Hope all of you have a great week in the meantime!



Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I’m sick of my mom spreading what little hair I have left around to look for new growth. For pete’s sake, you’d think she’d laid down sod or something, the way she keeps checking!

BEST PART ABOUT HAVING CANCER TODAY: It’s really going to happen on Thursday, although to be honest, I’m not even sure what it is. Something to do with the Atlanta Braves, and me getting to help cut a ribbon, and the great folks at CureSearch. Hmmm, when I know more, I’ll share it with you!

TRAVELING FOOLS ….. WELL, FOOLS, ANYWAY

144 Days to Go

We are back from Ohio, safe and sound and in one piece, all persons accounted for. The kids and I had a great time visiting our friends and I think Blaine enjoyed the five days of peace and quiet around the house (although since he knows what’s good for him, he keeps insisting that he’s glad we’re home again.)

Something I don’t think I mentioned was the weekend we spent in Atlanta prior to driving to Ohio. We attended our first-ever CURE Family Picnic and certainly saw what all the fuss was about! We missed last years when Kendrie was in Delayed Intensification and too sick to go; I was so glad that this year’s picnic wasn’t ruined by her hospital visit earlier in the month …. although it *was* almost ruined by steroids. Certain moments were trying, to say the least, and my patience span, while short to begin with, became embarrassingly shorter during our two-day stay.

I found it ironic that in February, when we attended the Camp Sunshine Circus and stayed the night with our friend’s Brandon and Ryan, Kendrie was on steroids and acted obnoxiously. This time, it was definitely S.S.D.D.! But that’s ok, luckily Ryan and Brandon’s parents are understanding, and we all managed to have a great time. So to Mike and Kristin, thank you once again for having us in your home and looking the other way when necessary!

The CURE picnic was lots of fun, with plenty of activities, games, prizes, food, and music.


Kendrie enjoying one of her favorite activities, mini-golf.

These Atlanta cancer get-togethers are starting to feel a little like a high school reunion, only instead of “there’s Joe from math class” or “there’s Rachel from the swim team”, it’s “Hey, there’s Chandler, who we’re supposed to go to the Lighthouse with!” and “Look, there’s Keegan, the new Atlanta ALL kid who moved here from another state!” and “Wow, everyone, look how big Camp Jack is getting!” It’s a bizarre little club, but what truly outstanding club-mates we have!


Kendrie hanging out with our friend and fellow ALL patient ... who recently finished her treatment ... way to go, Madie!

The next day, after staying with Ryan and Brandon, eating all the food in their house and playing with every single toy under the roof, we attended a birthday party and had lots more fun. The BEST kind of fun, in my opinion as a parent --- the kind that wears kids out and leaves them in a state of physical exhaustion! Especially since after the party I packed the kids up in the van and started the drive to Ohio. I’d much rather tire the kids out with good ole’ fashioned exercise before a road trip, as opposed to whipping out the Benadryl, which I have been known to do on occasion.


Exploring at Jump Zone .... what a great place! And happy birthday, Ryan!



"Can I help it if I'm so cute? It doesn't even matter that I stink at air hockey, at least I look good when I'm playing!"


Kendrie had only a few days of steroids left after that, so the last half of our time in Dayton was definitely more fun. And more peaceful. And less stressful and exasperating and infuriating. I’ll put Ohio pictures in the journal in a few days. To close, for now, I thought I would share with you a few of the lessons I learned while driving from Georgia to Ohio, and back again, by myself with the kids. Especially with a kid on steroids.

TOP SEVEN ADVANTAGES TO TAKING A VACATION AND DRIVING TWELVE HOURS IN A MINI-VAN WITH A KID ON STEROIDS:

1. There is no better way to see all the scenic side roads and beautiful images of Kentucky than desperately searching for an exit off I-75 that has a Pizza Hut. We never found any pizza, but saw a lot of pretty trees.

2. Pulling off to buy a McDonalds Happy Meal every third exit gives you the satisfaction of knowing you are doing your part to boost the local economy. A LOT of local economy’s.

3. Attending a cancer event like the CURE picnic with a sullen, disagreeable, unfriendly child who refuses to make eye contact or talk to anyone? Nothing more than a quick “Sorry, she’s on steroids” explanation is needed and fellow cancer parents everywhere will nod their heads in sympathetic understanding.

4. The steroids will give the child the steely, stoic, brave, courageous attitude they need to survive an attack from a mutant lobster-beetle thing in a public park at ten o’clock at night. (Don’t even ask.)

5. When steroid-child refuses to get in the pool and play at the water park, she can sit in a chair and save the “good” table with the umbrella and shade. Pouting and saving at the same time ... great time management skills in action!

6. Nothing says to a waitress, “Hey! Come spit in my food!” quite like a child who orders double entrees and double glasses of milk and then refuses to eat anything because the chicken is too crunchy and the mashed potatoes are too spicy and the macaroni & cheese isn’t cheesy enough and the chocolate milk isn’t chocolaty enough.

7. Truly, can you think of any way to make happier family memories than stopping at every gas station within a five-hundred mile radius to use the restroom? Again and again and again?

And can you believe that despite my groaning and complaining, I’m still upset and sad about the Lighthouse retreat being cancelled for this week? But hey, Kendrie would have been off steroids by the time we took *that* road trip!

Thanks for checking in,
Kristie

PS. These links actually should have gone at the top of this journal entry, as we have some online (and in person) friends who could use some extra prayers and happy thoughts right now. Please take a moment to visit their websites and drop them a note of encouragement. The messages in the guestbook do a lot to brighten our days .... and even more for families who are facing an extra-tough time. Thanks!

Our good friend, and Kendrie's buddy, Catie, who found out this past week that a "suspicious" spot on her scans in indeed the same cancer she was diagnosed with two years ago. NOT a relapse, which is a blessing, but still a challenge for the doctors (and parents, our friends Jenny and Tre') who now have to make treatment plans for Catie with no clear path blazed before them. Hell, forget "clear" ... no path at all. Jenny, Tre' and Catie, we love you guys and are praying for Catie every day!

Our online ALL friend Cameron, who is headed for his second transplant for his second ALL relapse. Once again, his older brother Chad will serve as his donor and our hearts and prayers go out to both Chad and Cam for a smooth process and total healing.

Another online friend and fellow ALL patient, Clare, who is only days out from her transplant for ALL relapse. The transplant went well, but Clare is feeling pretty crummy right now (normal, but not fun). Adding total insult to injury is the fact that today is CLARE'S 7TH BIRTHDAY!!! and she's spending it recovering in the hospital. Please drop by and wish her a happy birthday!

An Atlanta friend and fellow Scottish Rite ALL patient, Jake, who relapsed in May and is back at the "beginning" of treatment. We got to visit Jake in the hospital two weeks ago and understand that he is doing HIS part to boost the local McDonalds economy as well!! :) Jake, (and Elle and Brent!) we are thinking of you!

I've kind of gotten away from posting so many links to these great kids, and to some amazing social service organizations, since Caringbridge cracked down with their new policies. I'm feeling a little bit rebellious tonight and want to be sure and remind everyone that you can still get a Monster Links Page link from Julianna Banana's site and visit about a bazillion kids thanks to the ENORMOUS efforts of her dad, Terry. Another great site is Share the Love, a website that lists hundreds and hundreds of links to kids' sites.

Please take a minute to make a new Caringbridge friend (or two or three!) in the next few days .... tell 'em we sent you! :)

Thanks, Kristie

Quick Note

Just a quick note to say hello to everyone from the Buckeye State ---- we're here visiting friends in Ohio. It was the trip the kids and I were *supposed* to make the week Kendrie went inpatient. I got a wild hair to do it anyway, and now I'm really glad we did since we just found out that {thanks to the damage from Hurricane Dennis,} our retreat at the beach next week with The Lighthouse (retreat for cancer families) has been canceled. Not that it's all about ME, but that stinks!!!

So, as soon as I get home this weekend I'll update with new pictures. In the meantime, I hope you are all doing well!

Love,
Kristie

PS. Who am I kidding? It really IS all about me. :)

8 Years Old

I watched my 8-yr old daughter coloring pictures earlier this week, and she had drawn and colored a very elaborate sketch of herself and her two best friends from 2nd grade, holding hands and wearing very fashionable clothes with very fashionable hair, one blonde, one brown, and one black, almost like a Jr. Miss version of Charlie’s Angels, and I was reminded that my daughter is very creative.

I watched my 8-yr old daughter singing songs from her Cheetah Girls CD in the van today, tossing her hair about as she announced to the world that “I don’t wanna be no Cinderella” and I realized my daughter is indeed creative.

I saw a picture my 8-yr old daughter had drawn and colored of some incredibly creepy villain from the Star Wars movies she is now obsessed with, thanks to her idiotic father renting them from Blockbuster and letting all three kids watch them when I was gone for the day (but that’s another journal entry for another day) and although the picture of the villain gave *me* the heebie-jeebies, it was actually quite good, and colorful, and detailed, what with the spikes coming out of his face and all, and I realized my daughter is truly, honestly, creative.

I listened as my 8-yr old daughter regaled her younger sister with a re-telling of the time last year she got to ride a horse at a friend’s birthday party:

Brayden: “And remember, Mom, how I got to take my turn riding that horse and he was really big?”

And I said yes.

Brayden: “And remember how half-way through the party the wind started blowing really, REALLY hard?”

And I said yes.

Brayden: “And remember how the napkins started blowing off the table and flying around?”

And I said yes.

Brayden: “And remember how one of the napkins flew right in front of the horses’ face, and scared the horse, and it went up way high on its back two legs, and I had to hang on for dear life????”

Me: “Ummm, no. That didn’t happen.”

Brayden: “Oh yes it did! I was holding on to his mane with my bare hands and trying not to fall off!”

Me: “Ummm, no. That didn’t happen.”

Brayden: “Did too. You just didn’t see it.”

And I realized my daughter is not so much creative, as she must be a pathological liar. Or maybe it just goes with the territory of being 8 years old?

Kristie

THE LAST TIME ….. THE FIRST TIME …. AND OTHER RANDOM OCCURRENCES

157 Days to Go

In the world of childhood cancer, specifically the world of childhood treatment for ALL, which is so insanely long, parents walk a fine line between relishing each and every moment with their child --- and just wanting to hit the fast-forward button and get it DONE WITH already! So we find ourselves counting down, eagerly watching the calendar, sort of like I do at the beginning of these journal entries ….. only six months to go; only two spinal treatments left; only 198 more methotrexate pills to take!

We encountered a few of those “LAST TIMES” this past week which took me by surprise, but which pleased me nonetheless. First of all, Kendrie had an appointment at the clinic on Friday morning at 8:30 am. As you’ve heard me moan and groan about the Atlanta rush hour traffic before (on numerous occasions!) you know that to get to the clinic by 8:30 am means leaving our house by 5:30am. It’s only 110 miles, but those last thirty miles, through downtown Atlanta, on a work day ---- Ugh. NOT going to happen! Friends offered to let us drive up to Atlanta and spend the night with them Thursday night, but we got off to a really late start on Thursday afternoon and I figured just going directly to the hotel across the street from the clinic would be easiest. That way, we’re right there close by on Friday morning, right? Famous last words.

Actually, the hotel stay was fine. But as it took me over an hour to get all three kids settled into the hotel beds, giggling and pillow fighting and “arranging” the twenty-two stuffed animals they brought, I began to think that staying at our friends’ house would have been easier. Then, when I woke up at 4am with Kellen’s foot in my back and his arm flung across my throat, I began the mental lament of “What was I thinking???” when it suddenly occurred to me --- this is the LAST time I have to do this! Every appointment from here on out will take place during a school week, so Brayden and Kellen won’t come with us. This will most likely be our LAST hotel stay as well, since Kendrie only has two more spinal taps to go, and I can request those for mid-morning. Woohoo! Those are two pretty great milestones!

Then, after Kendrie’s appointment, we headed to the Atlanta zoo to spend the afternoon. Last summer, when Kendrie was still in the more intense part of treatment and the kids and I were going to the clinic once a week, or once every ten days, I figured buying an annual family zoo pass would be a good thing. I hated to drive 110 miles to the clinic for a thirty minute appointment and then turn around and drive right back home. So, we made quite a few trips to the zoo during this past year and have definitely gotten our money’s worth out of the pass.

This day, as I presented our pass to the attendant, he noted the pass expires at the end of the month and asked if I would like to renew. “Think of all the money you save on the free admission with five family members” he reminded me. Inside, I snorted. “Ha! Since when does $15 for rock-climb wrist bands, $24 for personal cheese pizzas for lunch, $7 for frozen lemonades, $6 for Coke slushies, and $1.53 for the personalized flattened pennies at the exit constitute a CHEAP day at the zoo????” Outside, I simply said, “No, thanks. We don’t live close enough to use it very often” and it occurred to me …. This is our LAST trip to the zoo! We only go to clinic once a month now (barring any complications) and no longer have a need for Atlanta-area entertainment in conjunction with clinic visits --- another pretty great milestone! (Although we’re still certainly receptive to meeting Atlanta-area friends for lunch on clinic days!)

So, three LASTS that I am quite happy to have encountered.

Our FIRST this weekend was pretty great, too. To recap, let me remind you that my kids got out of school on May 27th. We had a really nice Memorial Day weekend, then on Monday, May 30th, Kendrie started coughing and the heavens opened up and started raining. Before I realized what had happened, our summer vacation went downhill faster than the Jamaican bobsled team at the Calgary Olympics. Two weeks of rain …. two additional weeks of coughing and diarrhea … eight days in the hospital …. another week of recovery …. Finally, at long last, Kendrie had what, in MY opinion, was her FIRST good day of summer yesterday. We went to a friends’ house for swimming, backyard baseball, grilling out, blowing bubbles, swinging, and all-around excellent fun. It really did my heart good to see her running, playing, dog-paddling, and laughing.

Of course, now the residual of Hurricane Dennis has arrived and we’re forecasted for days and days of wind and rain. But at least I’ve got the memory of one fun to day hang onto and pull us through, ha!

RANDOMS:

The clinic appointment on Friday went well. Her counts were back up to normal (normal for a cancer-kid) so they’ve restarted her chemo at about 65 percent. She goes back on Wednesday of next week for a spinal tap and they will re-check her counts again to see if they should increase the chemo, decrease it, or keep it the same. It sorts of becomes a balancing act now, to get her the maximum amount of chemo her body can tolerate, while aiming to keep her bloodwork within a certain range. Just like at the beginning of long-term maintenance, we need to find her "new normal" range. Keep your fingers crossed she continues to tolerate it well, with minimal side effects or complications.
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Speaking of side effects and complications, if you have a spare minute, there is a really good, really informative and insightful journal entry on Andrew’s site right now that explains very well the difference between “remission” and “cure”. His mom did a great job telling about the medical and emotional effects of this roller coaster and I highly encourage you to read her perspective (one which I guarantee mirrors that of many leukemia parents!)
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I did have my first-ever *moment* with the oncologist on Friday. First of all, we saw another doctor who is not her normal doctor, but one which I know and have always liked in the past. He was very polite, very warm and professional ….. but when I mentioned to him that she is still having a problem with diarrhea, he motioned to the Yoohoo drink and half-eaten package of powdered donuts on the counter and said, “Well, you know, diet does have something to do with it.”

I didn’t know whether to be angry, or embarrassed! I had bags of instant oatmeal in my purse, but the hotel room we were assigned the night before didn’t have a microwave, so I didn’t have any way of cooking it. We didn’t get up in time to eat a healthy breakfast in the hotel restaurant, and the choices in the clinic deli on the first floor weren’t the most wholesome. Personally, I thought Yoohoo and powdered donuts was a better breakfast selection than her FIRST choice; Oreos and a Kool-aid Jammer, which I wouldn’t let her buy. It was probably silly of me to take that so personally, but it really bothered me. This kid has cancer, for pete’s sake, and for someone to imply that I’m not making the best or healthiest choices for her was a little insulting. But, I’ve obviously gotten over it, seeing as how I gave her Froot Loops and a soft-serve ice cream cone from DQ tonight for dinner.
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Kellen and Kendrie were playing in their bedroom this morning and I could hear Brayden asking if she could play, too. They kept telling her NO and it got on my nerves. (That’s the problem with having three kids … someone is always being left out and it just makes me crazy). So I called Kendrie into my room and told her she needed to let Brayden play, as well. This is the conversation we had:

Me: “Let Brayden play. You are excluding her, and I don’t like it.”

Kendrie: “I don’t know what 'espluding her' means.”

Me: “It’s when you leave somebody out on purpose. It hurts their feelings, and it’s mean. So let her play”

Kendrie: “But she doesn’t know the password. You have to know the password if you want to play”

Me: “Then tell her the password”

Kendrie: “But it’s in Spanish and I don’t know how to speak Spanish!”
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The kids and I were running errands this afternoon, driving all over town as the rain from Hurricane Dennis was starting to come down and the wind was starting to pick up. I caught myself, having a full-length, perfectly rational, give-and-take conversation with them about the proper pronunciation, delivery, and timing of the “You smelt it, you dealt it” insult. How to use it, when it’s funny, when its not …. And it occurred to me: I went to college for this???
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Well, I hope you all had a nice weekend. We certainly did, at least yesterday. Thanks to our friends Renee and Keith for welcoming us into their home and their pool (and Joe and Erin, I’m sorry you were running from Dennis, but that’s what happens when you let Uncle Sam move you to the Florida panhandle and leave the rest of us behind in middle Georgia!) Keith, as soon as you get off Netherlands time and re-adjust to Eastern Time, we'll do it again at our house! :)

Take care,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER: Running in the rain today, to and from the parking lot, on all of mom’s stupid errands. I know that doesn’t have anything to do with cancer, but I have lost so much hair that my head kept getting wet from the rain and it was very upsetting (not to mention cold!) to me!

***Kristie’s response: In my defense, I did carry her on my hip into the first store, balancing my purse, shopping bag, golf umbrella in the wind, and a 46-pound kid all at once. Since my left butt cheek muscle is still sore from whatever strenuous hospital activity I did last week, she was on her own after that, but at least I tried!

BEST PART ABOUT HAVING CANCER: Did you see that cool bear in the picture on the front page? My mom has an online friend named Ms. Vickie who sent that to me all the way from California! The bear’s name is Kicks, because he’s wearing cowboy boots, but you can’t see them in the picture. I’ve sort of re-named him Boots, like the monkey on Dora, because I really like the cowboy boots. Mom took that picture to show you my new haircut, too. It’s a little thinner now ….. but that’s ok, because I’ve got a new pet bear! Thank you, Ms. Vickie!

OH, THE HONEYMOON IS ***SO*** OVER!!!

161 Days to Go

Well, Kendrie arrived home late Sunday afternoon. She was amazingly happy to be back on her own turf -- you could really see the relief in the smile on her face. Brayden and Kellen ran to the door when she came in, shouting, “Kendrie’s home! Kendrie’s home!” and showered her with the pictures they had drawn for her, and the play-doh creations they had made. Everyone was so glad to see one another and chatted and laughed together on the sofa. They looked like an advertisement for Family Fun magazine.

That lasted about eleven minutes.

Then, the whining and arguing and fighting began. What is it about summer break that makes stay-at-home-moms everywhere want to invest in state-of-the-art sensory deprivation chambers? You know, a little capsule you could crawl into where you hear no squabbling, see no squabbling …. Truly, wouldn’t it be a small slice of heaven? Yesterday, their bickering over who was going to sit where at the restaurant for lunch got so ugly the waitress actually said, "I'll come back in a few minutes" and walked away, while I stood there making the “You three better figure it out or we’re going home!” threat. (sigh) How many days until school starts?

I think part of the problem was that we overdid it on Kendrie’s first day out. Lunch with friends, then a matinee, then two hours of shopping. She was tired and grumpy and of course all three of them seem to feed off whoever is in the worst mood. We had friends over on the 4th of July, and while the other kids played in the sprinkler, Kendrie opted to sit inside on the computer. I understand she’s still not up to par. “Home from the hospital’ does not necessarily mean “back at one hundred percent operating capacity.” She spent this afternoon lying in bed, watching “The Pacifier” about twenty times. It beats “Cheaper by the Dozen”, if you ask me. I think “The Pacifier” is a cute movie. Of course, I thought CBTD was a cute movie before I saw it a zillion times, too, so ask me again in a week what I think about Vin Diesel and the duck.

Speaking of one hundred percent, it is such an odd feeling that she is off chemo. Every night Blaine and I look around, like we are forgetting something. In the eleven months since she started long-term maintenance, we have never missed or forgotten a dose of nightly oral medication. Now, to *intentionally* not give it to her, feels weird and neglectful indeed.

She has an appointment at the clinic on Friday to have her counts checked and see if they have come up enough to resume chemo, most likely at a reduced dosage. (Shoot, for her, one hundred percent would be a reduced dosage!!) If she’s feeling up to it, and Atlanta isn’t under siege from hurricane weather, I think we’ll spend the afternoon at the zoo. So any of you locals who might like to join us, just let me know.

Before we leave for Atlanta, I am taking her to get her haircut. That’s a fairly optimistic way of putting it. It started falling out a few weeks ago, then seemed to stop. I hoped it would be no more than a bit of thinning, but it started falling out again in the hospital and it is out of control. She has huge bald patches showing through (and when you’re a tow-head to begin with, that’s not good!) and in the mornings she looks like her own personal lint brush. She is obsessed with her new pair of shark pj’s, but I’m having to wash them every single day to get all the hair off. Anyway, I convinced her to let me take her to the hairdressers tomorrow to get it cut. I told her the look we were going for was “pixie” …. In truth, it’s just that I think having short hair fall out will be a bit easier than this mess we’ve got going on now.

Of course, the REASON her hair is falling out again is because I sold all her cute outfits with hats on ebay a few months ago…… that guy Murphy will get you every time, I tell you. I was kicking myself about it, especially since she will need/want hats when school starts in a few weeks. Blaine reminded me that those old outfits wouldn’t have fit her anyway, and he’s right. They were from last year's bald period. So I went shopping tonight to try and find some cute hats and matching summer shirts. She’s not allowed to wear ball caps to school ….. and you know her distaste for anything girly or frilly or pink. Can I just tell you how hard it is to find any kind of hat out there that doesn’t have Barbie on it, or a bow or a butterfly or rhinestones or flowers or picture of Lizzie McGuire or pink fringe and beads??? Then I went to the Gymboree website and went hat-crazy. So now, we can’t afford to feed our other kids, but at least Kendrie will have several hats to choose from when school starts. Hey, do you think that Murphy guy will rear his ugly head again and the fact that I *bought* the hats means her hair will stop falling out??? :)

I want to say thanks again to all of you for signing into the guestbook and sending us e-mails letting us know you were thinking of her. I’m a little embarrassed to complain about our tiny speed-bump, when so many other kids suffer such serious setbacks. But, this was the most serious complication she’s had since we started ….. and I’m still feeling extremely relieved to be out of the hospital and back home.

Even if the kids are driving me crazy. At least we know it’s a short drive.

Take care,

Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I am feeling a little tired, truth be told. And this hair, man, is everywhere! In my eyes, in my mouth, stuck to my neck, stuck to my clothes …. I have to admit that I cried a little bit when I told my mom I was worried that I would be bald when school starts. She told me we would just buy some more hats and it would grow back, just like last time. Well, at least I’ll get out of washing my hair for a while!

BEST PART ABOUT HAVING CANCER TODAY: My boyfriend Nicholas declared his love for me today! Well, ok, maybe that’s exaggerating a bit, but you know he sent me a stuffed bear and a balloon bouquet when I was in the hospital, right? Well, tonight he brought flowers to my house for me! Pink carnations ….. they are in a vase, right by my bed. I even scotch-taped a picture of me and Nicholas to the vase so I can gaze at his adorable face all the time. We are the cutest couple EVER! Mom laughed at me because when I got up a few minutes ago to potty, I carried the flowers with me into the bathroom and set the vase on the counter. Obviously, (sniff) she has never been in love.

AM I CRAZY? OR JUST PARANOID? OR BOTH?

Sunday, Noon, Update

Well, if someone had just TOLD me that all I had to do to get Kendrie sprung from the hospital was have a mini nervous breakdown, ramble in public about my fear of a relapse and dirty socks, and call Blaine in for a night of reinforcement .... I could have done that a week ago!! :)

The oncologist came in this morning to let them know she could come home --- Blaine promptly called me on the cell phone and made the doctor talk to me (smart man, my husband.) Her counts are up a wee, itty bitty bit, and she hasn't had any more leg pain or fever, so home it is. We'll check counts at least once or twice this week, and have clinic scheduled for the 13th. Any fevers or pain in the meantime and it's back to the ER we go. But I have great faith that won't happen. (and if it does, I will be much better prepared this time, with shampoo and a blow dryer, ha!)

Well, if you'll excuse me, I have hamburgers and watermelon and sparklers to buy. (Not really about the sparklers .... I am a firefighters daughter and have an inborn fear of firecrackers, but we'll still be celebrating this 4th of July, if for no other reason than being back as a family again.) Thanks again for humoring my ranting this past week .... have I mentioned how much I adore all of my Caringbridge family?? :)

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165 Days to Go

I had no idea the damage that eight straight days of filtered air, fluorescent lighting, hospital cafeteria food and constantly-interrupted sleep could do to a person. Specifically, to me. I haven’t looked this bad since my last scrapbooking retreat, when my friends and I cloistered ourselves indoors with 80’s music, bottomless gallons of soda and vats of peanut M&Ms for 72 straight hours. And that was for FUN.

When I took Kendrie to the Emergency Room at Childrens Hospital in Atlanta last Friday night, I certainly suspected we would be kept overnight. Possibly even two nights. So, being the organized, prepared Mom that I am, I packed an overnight bag. A single overnight bag for the two of us. I packed us each a change of clothes and threw in a few snacks, since you never know about those hospital cafeterias and vending machines.

And as you know, I wound up staying eight nights and days. I am home now, having traded off with Blaine for a day. Kendrie, of course, is still in the hospital. I had to come home and make drastic restitution to my overnight bag. Here are some of the things it did NOT contain:

Clean socks for me.

Make-up, face cleanser, or moisturizer of any kind.

Shampoo, conditioner, blow dryer, or curling iron.

Tweezers for plucking the gray hairs that grow out of my head at an alarming rate.

A mirror (perhaps in hind-sight that is a good thing.)

Enough clothes or pajamas for either of us.

Any crafts or activities, except for the portable DVD player (more on that later). Thanks so much to Regina and Madie for visiting and rescuing us in the crafts department!

All I can say is thank goodness for the washer and dryer available to families on the Oncology Floor, and for the deodorant and toothbrush I *did* think to put in, otherwise the entire nursing staff would have been calling me "Pigpen" and commenting on the cloud of filth and dust that swirled around me when I walked the halls. As it was, I wore the same pair of socks for an entire week and gave up caring if my hair was brushed when I walked to the vending machines.

I realize in the world of pediatric oncology, eight days is a drop in the bucket. Check out Victor, who has been in the hospital for two months since his transplant. Now *that's* a long time. And I’ll be the first to tell you that the facilities at Children’s Atlanta are more than decent. They offer private rooms with private restrooms, so even though the tubs are tiny and the towels are thin and apparently the laundry staff has never heard of fabric softener, at least I was able to take quick showers in peace. Each room has a small sofa that folds out to a small bed, so at least I wasn’t sleeping in a chair, or worse, trying to fit my big butt in Kendrie’s bed with her (except for the times each day I *chose* to do that for snuggling!) Children’s also allows parents to order room-service trays from the cafeteria to be delivered to the room, so you don’t have to leave to go to the cafeteria if you don’t want, unless you’re really jonesing for a Twix or Snick ….. er, I mean, a healthy apple or banana.

So when I got in my car tonight to drive home and looked at my reflection in the rear view mirror, I had to admit the wan, sallow, stressed-looking face staring back at me couldn’t be blamed completely on the amenities, or on the fact I had gone eight days without sunshine or fresh air. This is the face of worry. And this is why cancer sucks.

Honestly, really, truly ….. leukemia hasn’t been that bad. (Easy for me to say, I know.) But overall, Kendrie has done very well with treatment. No side effects too drastic or challenging and she’s plugged right along so far. We managed to go twenty months dodging the inpatient bullet, something that amazed all the doctors and nurses this past week. And maybe it’s just that I’m unaccustomed to hospital stays and the emotions and stress and fatigue that go along with them … but I can tell you without a doubt that last night (actually, early this morning) I spent 120 of the most frightening moments I have had since Kendrie was diagnosed. And it was a harsh reminder of why cancer sucks.

Her counts, as you know from following the past few journal entries, haven’t bounced back as quickly as we would like. Or even as quickly as “normal” (whatever the heck “normal” is in this insane world.) But like the oncologist said, every kid is different and we’re still no where near the world record for longest time with low counts. Every hospital stay, every bug, every illness, can be different. Maybe this is just a particularly harsh virus. Maybe her body is simply tired from twenty months of chemotherapy, especially considering she not only has never had a break from chemo, but has been on 125 percent for months! Maybe the reason her counts aren’t going up is because what few white cells she IS producing are going straight to the sores on her tongue and heiney, healing those. Whatever. I’m perfectly fine with all those excuses.

But last night she was pre-medicated at 2:45 am (don’t even ask) to finally receive her blood transfusion. She hadn’t been to bed yet (again, don’t ask) and I just knew the benedryl and tylenol she received would knock her completely out. Instead, just a few minutes later, she started tossing and turning. And complaining of leg pains. Then complaining a little louder. Until, fifteen minutes later, she was literally screaming about the pain in her legs, writhing in the bed and begging me to make it stop. We tried hot packs, massage, even morphine. Nothing touched the pain. Do you know how difficult it is to be calm and comforting on the outside for your child, while your insides are frantic, wondering why this is happening and fearing the worst?

Logically, I knew the leg pain could be caused by any number of things: maybe the bone marrow was finally kicking in and starting to produce cells-- that can be painful. Maybe the week off chemo precipitated a growth spurt-- that can be painful. Maybe it was a reaction to the benedryl and tylenol, although technically they should have *helped* with the pain.

Of course, cancer parents everywhere know where my mind was going. What are the primary symptoms at the time of almost every kid’s diagnosis? Bone pain, low counts, and fevers. After listening to her scream and cry until 4am, feeling powerless to do anything about it, and then lying awake in bed with her, rubbing her legs until almost 5am and trying not to cry in front of her the whole time, you can guess exactly where my imagination was racing. I was tired, I was stressed, I was terrified. When the doctor came in to talk to me this morning, I asked about a bone marrow aspiration to rule out relapse and promptly burst into tears. (Maybe I needed more than three hours sleep?)

In the light of the day --- even the fluorescent light of the hospital room --- I know I was over-reacting. Most likely. Probably.

Kendrie woke up in a good mood, ate well today, and never complained of any kind of leg or bone pain. Her counts? Still not up. But the oncologist told me they are not yet worried. Promised me that if they *got* worried, they would tell us. They are still waving the “maybe you can go home tomorrow, depending on what her counts look like” flag in our faces …. Taunting us.

So you see, that is the “sucks” part in a nutshell. That is the reason I can’t blame the lines on my face on lack of moisturizer, the gray hairs on my head on lack of tweezers. The scary fact that a child can be coasting along, not a complication in sight, and even something as minor as a virus can not only land you in the hospital, but force your mind to think thoughts better left buried. Why aren’t her counts coming up? Why did her legs hurt? Why can’t I just take a deep breath and have faith that a week from now I will look back and roll my eyes at myself for over-reacting that way?

There is no relaxing. Ever. Even when things are going well, in the back of your mind you think dark thoughts and are constantly on the watch for signs and symptoms of something wrong. Then, when they show up, you spend the better part of the early-morning hours making really irrational bargains with God.

I hate this. I was the mom who let her young children climb on all the park equipment (within reason) and didn’t freak out – too much -- when they ate bird poop off the playground. They wear bike helmets to ward off head injury, they ride in well-designed and properly installed car seats, and everyone is immunized and loved beyond measure. And still I can’t protect her from this. Sitting back, waiting for her counts to come up. Waiting to be sure the leg pain is nothing more than … well …. leg pain. Last night, lying with her in bed, holding the hot packs on her legs, I had the frantic thought that I needed a crystal ball so I could look into the future, see our family intact and reassure myself that everything would turn out ok. Then a cold fear settled into my stomach and chest as I thought ….. “If you really had the crystal ball, would you look? Or would you be too frightened of what you might (not) see?”

Crazy? Paranoid? You make the call.

Now, to address those of you who have so gallantly offered to bring or mail us some DVDs so I can get a break from Cheaper by the Dozen --- hey, thanks! Those are nice offers, but I actually brought about a dozen movies. She is watching the same movie over and over again by CHOICE! Although I put my foot down the other day and insisted she watch something else. I just couldn’t take it anymore. So we watched Home Alone 3, three times in a row. Maybe I should have kept my mouth shut? :) That’s ok … Blaine is at the hospital now and he can take a turn with movie duty.

And as far as the guestbook entry from Cristin from Virginia, for pointing out all the mistakes in Cheaper by the Dozen …. I don’t know whether to thank you or curse you, since now I will have to watch the movie again just to find the mistakes, ha!!! (I had already noticed the sunglasses mistake myself. Truly, a sign that I’ve seen the movie too many times!) :)

Well, thanks for letting me ramble. I hope I don’t seem irrational or melodramatic. I guess it’s what lack of sleep, and lack of control in a terrifying situation, can do to a person. I’m going to go take a long hot shower in MY bathroom, then have a long, deep sleep in MY bedroom, and spend tomorrow with my two oldest children who I have missed beyond measure this week. I’m sure by tomorrow morning my late-night fears will seem even more remote. If nothing else, the break from the movie should be good for my mental health. But thanks for listening, anyway. Is it sick that an online journal can be this cathartic? (Don't answer that.) :)

Kristie

PS Did you know that it is apparently possible, simply by getting up and down out of a recliner twenty times a day to get things for a small child, to pull a muscle in your left butt cheek? Truly, I am astounded by my own athletic ability.

PSS Happy 4th of July to everyone!

Extended

Well, it appears our stay here in the Hotel de la Childrens has been extended another few days .... lucky us. Of course, if Kendrie is still sick then this is the place for her, but what I wouldn't give at this point for a good night's sleep in my own bed and a nice, long shower in my own bathtub...

Her counts went down today, quite the wrong direction, so our Get Out Of Jail pass was promptly rescinded. In fact, we are sitting here as I type this waiting for the antibody testing to be completed so she can receive another blood transfusion. All blood and stool cultures are negative for any sort of infection, so we're still leaning towards this being nothing more than a pesky virus that she's having trouble knocking. To think it could be anything more serious than that is too terrifying to even consider, so not even my imagination is allowed to go that direction. My short-term goal at this point is to get her well enough to come home in time for the 4th. Although if we're still inpatient, I've heard the fireworks view from the roof of the hospital is wonderful. :)

Have I mentioned to you that when I am stressed, I eat? And when I am bored, I eat.

I have gained at least ten pounds in the last week, evidenced by the fact that the "fat" jeans I wore in here last Friday are now too tight.

Yet another reason to hate cancer.

Thanks for checking in and leaving us so many nice messages in the guestbook. My friend Renee (who has completely saved us this week by babysitting Brayden and Kellen every day so Blaine doesn't have to call in to his brand new job already!) lent me her laptop tonight. For some technological reason that is outside the realm of my computer-understanding, I STILL can't access my e-mail. But I can at least access our Caringbridge guestbook and was able to read Kendrie some of the entries tonight. She enjoyed that for about fifteen minutes, until it was time to watch Cheaper by the Dozen again.

Well, hope you all have a good weekend and a happy holiday,
Kristie