WHERE THE TERRORISTS FAILED, LEUKEMIA SUCCEEDED (ALMOST)

186 Days to Go

Well, I went out of town for a few days this week to visit friends. I’ve flown a few times since 9/11, but not many times since Kendrie was diagnosed. Still, the upgraded security procedures weren’t entirely new to me as I prepared to go through security at the Atlanta airport on Tuesday morning. I made sure all my tweezers, scissors, fingernail files, pencils, q-tips, tubes of chapstick, or anything else that could possibly be construed as a weapon was safely packed in the luggage I had checked. I had one purse and one carry-on small enough to fit in the overhead compartment. Boarding pass and photo ID at the ready. I turned off my cell phone, took off my jacket, removed my keys from my pocket, and placed all my items in the little plastic bin to put through the security camera machine. I waited my turn in line and did all of this without grumbling --- enhanced security measures are an unfortunate but necessary evil in this day and time and I certainly don’t begrudge airport security for trying to ensure my travels are safe ones.

As I was preparing to step through the metal detector, the following conversation took place:

Security Guard: (in an extremely bored and uninterested tone) “Ma’am, your shoes need to be placed in the bin.”

Me, sounding extremely intelligent: “Huh?”

Security Guard: “Shoes in the bin, please”

Me: “Oh, there’s no metal in them.”

Security Guard: “Shoes in the bin, please”

OK, let me explain two things right now.

Part One, I have a thing about feet. Mainly, that I hate them. They are ugly, disgusting appendages and if it weren’t for the fact they are necessary to stand upright and walk, I would prefer never thinking about them at all. I don’t like the way they look. Especially other peoples. Unless I am in the pool or the shower, or wearing sandals, I ALWAYS have socks on. I don’t get pedicures or foot massages. I hate feet. The only feet I have ever loved were my childrens’ when they were babies and they looked like little pork chops. I would get them out of the bathtub, wrap their clean, sweet-smelling bodies in a towel and kiss those adorable little feet, which is proof of how much I love my children. Everyone else’s feet gross me out.

Part Two, the floor of the security area at Atlanta Airport is a bunch of dirty, filthy, icky, “who knows when it was mopped last-linoleum”. A place where God only knows how many people have sneezed on, coughed on, and done who knows what else on???

Security Guard: “Shoes in the bin, please”

Me, realizing that if I take off my sandals and put them in the bin, and the bin goes through the conveyer-belt-camera-thing, that means I have to walk through the metal detector BAREFOOT …. on that nasty floor where a million other peoples dirty nasty feet have been walking. Oh my God, I almost had an anxiety attack.

Me, getting a little panicky now: “No, really, they’re just plastic sandals. They won’t set off the alarm.”

Security Guard: “Shoes in the bin, please”

Me: “Can’t you let me wear my shoes and then use that little wand to check them? I’ll happily submit to the little searchy-wand thing, but I prefer to keep my shoes on.”

Security Guard: “Shoes in the bin, please”

Me, trying to sound stern: “Listen Mister, having every one of my body cavities strip-searched by a fat lady with a mustache is preferable to walking on this grimy, disgusting, germ-laden floor barefoot, and I SERIOUSLY would like to keep my shoes on!”

{crickets chirping}

So, after I walked through the metal detector barefoot, mentally slapping myself for every sock-and-sandal wearing tourist I’ve ever made fun of, it was all I could do not to stop right there and soak my feet in Purell. For the parent of a cancer child who has spent the past twenty months avoiding germs at all cost, do you have any idea how difficult that was for me? I was sweating like a hooker in church, and practically hyperventilated right there, just imagining all the bacteria and dirt and SHIT that was attaching itself to the bottom of my feet. Feet, let me remind you, that I’m not particularly crazy about in the first place. It was, hands down, more discomforting and stressful than my last cavity filling or pap smear.

I’m amazed and impressed that terrorists did nothing in their attempt to stop American travelers through fear and intimidation. We fly anyway and snub our noses at them. But the linoleum floor at Atlanta airport might be my undoing. Not that carpet would be any better. All I could think was ….. “Would Kendrie’s oncologist give me some of those shoe-booties to wear on my feet the next time I travel? Or, how silly would I look if I pulled a pair of socks out of my purse next time …. socks that I could burn when I reached my destination?”

So, on my return flight home, I braced myself. I knew what was coming. I squared my shoulders, hiked up my fortitude, and said to the security guard at the Baltimore airport, “Do I need to put my sandals in the bin?” to which he replied, “No. Why would you?”

Obviously I need to move to Baltimore and never fly out of Atlanta again.

Anyway, foot-and-germ phobia aside, I returned home Thursday night to the sight of my oldest human-pet retching in the toilet, and then the middle human-pet started in last night with the upset tummy. Earlier, when I thought Kendrie’s antibiotic had upset her tummy and the cough was making her throw-up, it appears I was wrong (imagine that). Must be some three-or-four day virus going around.

We (meaning the three of them) have done nothing the last two days but lie around, take naps, and moan. I’m not sure if the moaning is because they feel crummy, or if it’s because they are so bored.

Yes, let me beat this dead horse a little longer and gripe about the fact that the rain is continuing to come down here in middle Georgia. It's raining as I type this. It’s no longer non-stop, but it is daily. And when it’s not raining, it is overcast and depressing. But again, I’m glad we’re not wasting upset-tummy days on good weather. We still have eight weeks of summer. Statistically speaking, the odds are in our favor that the sun will shine at least a day or two before school starts again in August, right?.

Thanks also to all of you for the nice notes in the guestbook about Kendrie’s hair thinning. It makes me feel better to hear about the other kids who have lost hair during maintenance. Not, of course, because I’m glad *anyone’s* hair is falling out, but there is a definite sense of security in knowing your child is not the only one. Ashley’s mom mentioned in the guestbook that when Ashley lost her hair during maintenance, she had been fighting a chronic sinus infection. That makes sense to me, that the immune system is low and the hair would go. Kendrie has had this cough/bronchitis(?)/diarrhea thing for almost two weeks now, so that could very well be the answer. It’s still coming out, but not drastically. We’ll wait and see what happens.

Oh, speaking of warped perspective, Blaine came in the kitchen this morning holding the thermometer and said to me, “One hundred point eight” (as in, 100.8) I look at him, wild eyed, and said, “Oh my gosh, I better go pack a bag and get ready to call the oncologist!” and he said, “No, it’s Kellen, not Kendrie” Immediately, relief flooded through me and I said to him, “Oh, good. Don’t ever scare me like that again.” Now, how sick is that??? My poor son has a fever, can’t stop running to the bathroom, and I’m *happy* about it??? Truly, the mind of a cancer-parent will never be the same again! Or at least MY mind, anyway!!

Well, I’m off to soak my feet.

Hope you are all having a great weekend.
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER: I’m still just not feeling real perky. I just woke up from my second nap today, and it’s not even 3 o’clock in the afternoon. And I don’t *take* naps! Oh well, at least Brayden and Kellen both feel like dog poop, too, so it’s not like I’m missing anything.

BEST PART ABOUT HAVING CANCER: Convincing my mom or dad to lay down with me for these naps is proving easier than I anticipated. Either they are suckers, or they’re lazy. Or both!

The Sun’ll Come Out… Tomorrow …. Don’t Bet On It.

191 Days to Go

Anyway, after much debate, and to the bafflement of our local meteorologists, the fiery globe in the sky was, indeed, positively identified as the sun. It made an appearance again this morning for several hours. Did we spend those hours making sun-tea on the porch … or risking melanoma by basking in it? Playing in the sprinklers, or working in the yard? No, we spent those hours taking Kendrie back to the pediatrician, where her previous diagnosis of “Early, possible, maybe, early pneumonia” was downgraded to a simple “Bronchitis”. Ok, fine, but anytime a kid coughs so hard and so long that they throw up, it’s time to take them back to the doctor. Just my opinion. But maybe my opinion was tainted by my lack of sleep, since her infernal coughing has kept us up the past three nights.

So after the doctor gave us the basic shoulder-shrug-not-much-you-can-do-watch-for-fever-let-it-run-its-course speech, I decided to take my girlfriend Renee up on her invitation to swim. Kendrie wasn’t contagious, all three kids (and mom) were going stir-crazy being stuck in the house so long, and best of all … the sun was finally shining! So we ran a few quick errands, went home, ate lunch, got everyone dressed, hopped in the van to drive to Renee’s, and yep, you guessed it, it started raining again. We got poured on.

All was not lost, as we waited half an hour or so and then let the kids swim anyway. I figure a few raindrops never hurt anyone, and as long as I’m not letting them swim with a metal umbrella during a lightning storm, things will probably be ok.

I did notice something a little disturbing when Kendrie got out of the pool. Actually, I noticed it this morning at the doctor’s office. She was sitting in my lap with her head under my chin and I kept getting hair in my mouth. At first I thought it was my own (I do shed more than a St. Bernard in springtime) but they were short and blonde. Mine is long and, well, NOT naturally blonde. I ran my fingers through her hair and sure enough, it was coming out. Not a lot, but a little. More than normal. When she got out of the pool, I realized she has thin patches on the top of her head. Not bald … but definitely thin.

What I find interesting is just yesterday another mom on my All-Kids list posted a question about kids losing their hair in maintenance, since it had happened to her daughter. I thought, “Wow, I don’t think *that* happens very often” and the next day, I realize it’s happening to Kendrie. I’m going to hope it’s just thinning …. She IS still on chemo, after all, and it IS still killing those quick-dividing cells. Naturally, if going bald again, or even just a psuedo-bald-Donald-Trump ‘do is the price we pay, so be it. Of course, that’s easy for me to say; I’m not the one it’s happening to. But maybe we’ll get lucky and it will thicken up again, without leaving us entirely.

In an effort to prepare her, I casually mentioned tonight, “So, Kendrie, you know what I think? Your hair might be falling out again because of the chemo”. She didn’t take it real well. Not even Dad’s comment about “Now we will look alike again” cheered her up. And I know how much leukemia has warped my perspective when all I could think was, “Well good grief then, hurry up and fall out NOW so we have a chance to grow some of it back before school starts in August!” How sick and twisted is that?!?!? (wait, don’t answer)

Hope your week is off to a good start, and rolls along smoothly! Thanks for checking in on us and leaving us messages in the guestbook; we love hearing from you guys,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Going to the stinkin’ doctor, still having this stinkin’ cough, and mom hinting to me that my stinkin’ hair is falling out again. I wish she hadn’t said anything. I was fine until she mentioned it, and then tonight in bed I noticed it was on my pillow. That just stinks!

BEST PART ABOUT HAVING CANCER TODAY: It’s a tie. Swimming at Ms. Renee’s (even though that doesn’t have anything to do with cancer) and going to our Camp Sunshine Middle-Georgia Area Support Group Meeting tonight … those child-life specialists sure are nice!

Fiery Globe in the Sky

“The villagers stumbled from their homes, blinking rapidly and shielding their eyes against the blinding, radiant orb that had suddenly appeared in the sky. What *was* this mysterious object … this glowing ball of fire? A sign from the heavens? A portent of danger? Or … dare they dream … ??? ... that long-forgotten object of folklore from generations past, heard about only in tales told 'round the hearth-fare …. that entity, sunk in oblivion, from days of old called “The SUN” ????

Alas, the truth would never be known, for after caressing their faces with its warmth and teasing the villagers with the hint of its gleam … the Temptress of the Glowing Orb disappeared once more, never to be seen again.”

That is my Creative Writing 101 attempt to tell you the sun came out for half an hour today, just long enough to ratchet the humidity from “unbelievably high” to “off the charts”. My hair now rivals Don King. About the time I quit squinting and remembered I owned something called “sunglasses”, it started raining again. (sigh)

Hope your weekend is going well,
Kristie

MY NAME IS NOT NOAH AND I WANT IT TO STOP!!

(EVEN HE ONLY HAD TO PUT UP WITH 40 DAYS OF THIS!!!)

194 Days to Go (but how many of them will be rainy???)

So, as you can tell from the whining that has already begun in this journal entry, it is still raining and gloomy here. Five days in a row; not insignificantly, I might add, it's also the first five days of summer. Does that bite or what?? So, we’ve made a list of the "Top ten fun things we’ve discovered to do on your summer vacation when it’s rained every single day":

1. Watch a lot of tv and eat a lot of junk food.

2 through 10. See number 1.

Well, kidding. Sort of. The kids have also been busy playing “Stuffed Animal Baseball” and cutting and coloring lots of pretend money for their pretend toy store. I think even *they* are sick and tired of Kim Possible re-runs. I’m just really annoyed because I spent a good portion of winter and spring sucking up to my girlfriend Renee who has a pool in her backyard and what good has it done me? Absolutely none! (Kidding, Renee, you know we’ll be there the first sunny day!)

Thanks for all the nice e-mails and guestbook entries asking how Kendrie is doing. In between coughing her head off and the Hershey Squirts, she’s managing to find time to fight and play with her siblings, so I think she’ll be fine. She’s been running a very low temperature which we are keeping an eye on, but her oncologist says the antibiotic that her pediatrician gave her for the “early, pre, maybe, possible, early, pre-pneumonia” in her lungs should do the trick. She was complaining last night that her ear hurt, but again, the antibiotic should take care of that, too. The clue that she’s not just faking it all is the fact that last night she (gasp!) slept through her T-ball game! Didn’t matter, though, because (can you guess?) it was rained out! But for her to take a two hour nap before dinner means all is not completely well yet. So, its probably just as good that it’s raining since she wouldn’t be able to get out anyway. And, the humidity from all the rain has made my hair so big I don't think I could fit in the van to drive them anywhere, anyway. So perhaps this is one of those “blessing in disguise” things … you think?

OK -- all of you who author a CaringBridge site need to go to Julianna Banana’s site and sign up for her dad Terry’s Monster Link Page. And whether you’re an author or a Caringbridge visitor (or lurker, if you’re like me) if you’ve never heard of The Monster Link Pages … like, say, you’ve been held hostage in Bolivia these past eighteen months without internet access, then you definitely need to go to Julianna’s site and check it out!

Like Terry said, thanks to Caring Bridge’s new policies regarding linking on our sites … or the prohibition against linking, I should say ... well, that bridge isn’t much more than a footpath now. And not since Roosevelt’s Army Corp of Engineers showed up to get the job done in the Tennessee Valley (or whatever) has someone strapped on a hard hat (virtually speaking, of course) to fix the problem --- Enter Daddy Banana Terry! His Monster Link page is going to become the glue that holds Caringbridge together from this point forward.

Don’t get me wrong … Caringbridge provides a fabulous service and I will be grateful for it for years to come. How else would I have met all of YOU?!?!?!? I even donated today to help them with their current fundraising campaign, as I know providing a free service like this to millions of people don’t come cheap. But if I can’t link from site to site anymore, then I plan on book-marking the Monster Link site and bouncing around from there. So a huge shout out and thank you to Terry for making it happen! Don’t forget, be sure to visit Julianna’s site and sign up to get your child represented on the Monster Link Page!

Have a nice weekend. We plan on bike riding, playing outside, flying kites, exploring a park and wildlife area, using sidewalk chalk, and charcoaling dinner on the patio. Or, maybe we’ll just look out the windows and watch it rain.

Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Today’s worst part is not really cancer -related, and is a tad too delicate of a subject for me to discuss publicly. Desitin, anyone?

BEST PART ABOUT HAVING CANCER TODAY: I heard my mom on the phone with Nurse Mary up in Atlanta this morning and I got a little nervous …. But I guess they were just discussing who is hotter, Brad Pitt or Jesse Metcalfe, because Mom hasn’t mentioned me having to go up there any time soon. Good thing, too, because my Curious George monkey is rounding first and really turning it on now … he’s not letting up at all he’s going to try for second ….. the ball is bobbled out the center and here comes the throw and what a throw ……….

Summer Starts with a BANG!

196 Days to Go

Just so you know what a caring, fun-loving, entertaining kind of Mom I can be, let’s re-cap the schedule and activities I have arranged for the children this past week:

Thursday night: Swimming and dinner at a friend’s house, complete with trampoline time (Heaven on Earth, as far as they are concerned.) chicken nuggets, and watermelon. Really, does it get any better?

Friday: Final day of the school year; complete with requisite end-of-year partying and frenzy. (Which for mom, entails making two dozen cupcakes for one class; buying and providing ice cream and topping supplies for sundaes for another class; cold hard cash for the third and final class to pay for party supplies; trying to help with three parties being held at the same time in different classrooms; four end-of-the-year teacher gifts; one end-of-the-year nurses gift; and one end-of-the-year Pre-K Resource coordinator gift …. No wonder the parents are as tired as the kids are on the last day of school!)

Friday night: Dinner with friends and an evening at the movies --- Madagascar, complete with soda pop and smuggled M&Ms.

Later Friday night: Receive phone call from parent of Pre-K classmate of Kendrie’s, explaining classmate has been diagnosed with chicken pox after spending two days since breaking out (with what the parents thought were ant bites) in close proximity to Kendrie. (Wow, that’s a really bad run-on sentence, isn’t it?) Luckily, the late-night phone call to the oncologist reveals Kendrie’s chicken pox titers still show “good”, or “immune”, or whatever, so we don’t have to do anything. Whew! I would hate to start the summer off with an illness or medical stuff! (Ominous last words ………………..)

Saturday: Neighborhood cook-out (at Kendrie’s boyfriend Nicholas’ house), complete with playing in the sprinklers, picnic-ing outside, birthday cake and grab bags.

Sunday: Birthday party for our friend Jacob, complete with a moonwalk and swimming. Realize half-way through party that I didn’t think to ask oncologist if it was OK for Kendrie to be around other kids ….

Monday: Have plans to take the kids fishing, but weather is gloomy so we postpone; spend the rest of the day listening to kids complain, loudly, that they NEVER get to do anything fun. Kendrie starts coughing; assume it is a rebellious plot since she’s really mad about the fishing.

Tuesday: Begins raining; Kendrie still coughing; take kids to go bowling with friends since it’s an indoor activity. Kellen has a ball game that evening, but Kendrie’s cough is starting to sound worse so keep her home and out of the drizzle; listen to her fuss about not being allowed to go.

Tuesday night: Cough is bad enough that Kristie gets up in the middle of the night to give medicine (hey, you *know* it’s bad if I get out of the bed and everything!)

Wednesday: Have plans to go swimming with friends, but it’s still raining. LOTS of tv time today. Kellen doesn’t get out of his pajamas all day. Suddenly, our fun-and-activity-filled summer is looking bleak. Will the rain ever stop??? Decide to take Kendrie to the doctor for cough, which continues to worsen.

Which brings us to this afternoon: Can you believe her lungs sounded gunky enough to warrant a chest x-ray, which showed “pre-possible-maybe-early-pre-pneumonia” ??? So, ok, a course of antibiotics is not too much trouble. But now, as I type this, she is laying in my bed, coughing her head off, and running a slight fever.

I *thought* the chicken pox exposure was a wee bit of a scare …. I *thought* the non-stop rain, forecasted for the next ten days, was kind of a nuisance. But I’m making public my stance that I DO NOT WANT TO SPEND THE FIRST WEEK OF SUMMER VACATION IN THE HOSPITAL WITH A CHILD WITH PNEUMONIA!!! Kids with ports usually get a free pass to the ER if their temperature goes above 101. Hers isn’t that high yet and I’m saying a prayer tonight that it stays at 100, which is where it is now. We haven’t had to go to the ER for an unexpected fever one single time since this whole leukemia thing started … and that's a track record I'd prefer to KEEP, if that's ok.

I promise not to complain about the rain anymore ….. I promise not to gripe about our plans for swimming and playing at parks and bike riding that keep getting messed up …. Just please, please, please, please let the antibiotic kick in so she starts to feel better! I won’t even gripe if I have to watch “The Buttercream Gang” one more time! Shoot, Kellen can stay in his pajamas AGAIN, just let her start feeling better soon!

Thanks for checking in on us,
Kristie
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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: You name it, I feel it. Coughy, wheezy, (hey, aren't those two of the dwarfs???) my head hurts, the medicine is upsetting my tummy, which is causing a distinctly unpleasant occurrence in the restroom ... ugh. Is it some kind of bug??? This is NOT how I want to start my summer!

BEST THING ABOUT HAVING CANCER TODAY: Well, I have to admit that it was pretty cool when they did that chest x-ray and you could see the big ole' round thing on the picture that shows where my port-o-cath is located in my chest! My doctor printed out a copy for me to bring home and I think it looks neat!

FEELING BETTER TODAY, THANKS! (I'm talking about Kristie, not Kendrie)

199 Days to Go!

Hey do you see that? We have officially got LESS than 200 days of chemotherapy left, yippee! Have I mentioned to you lately that we are having Kendrie's Official Off-Treatment Party on December 18th, 2005 --- mark your calendars now!

First of all, three cheers (or prayers, or meditations, or chants and incense, or whatever floats your boat) for Jake, whose bone marrow aspiration on Friday showed NO bone marrow involvement in his relapse! This is really, truly, wonderful news. He’s still got a long road ahead of him and his parents and doctors have some tough decisions to make, but this is definitely a blessing and I’m so happy and grateful for their family.

Secondly, thanks to all of you who offered me kind words in the guestbook after my last *melancholy* journal entry. It’s extremely comforting to know that I can come here and throw a virtual temper tantrum, or virtual pity party for myself, stamp my foot on the “send” key, and actually have people tell me they feel the same way, or offer a note of support. Anyone who needs proof about the goodness of mankind just needs to spend a little time on Caringbridge.

Speaking of Caringbridge, we’ve received official notice that the “new and improved” Caringbridge will be unveiled on June 1 (and unavailable from 8pm until midnight CST on May 31.) Apparently, as per the e-mail I received, all CB sites established after that date will have a “new” look with “new” cool features. All of us with sites begun before that day will now be referred to as “Classic” sites. I don’t know who came up with that title, but it’s downright insulting to a 38 year old woman who spent an hour last night plucking the gray hairs out of her head. First my high-school glory days songs are “Golden Oldies” on the radio, I *NEVER* get carded for beer anymore, and now I’m a CaringBridge “Classic”????? I’d like nothing more than to pull up my knee-high support hose and give that person a good swift kick in the --- oh, never mind.

I’m going to talk a little more in my next journal entry about *why* I think I was melancholy earlier this week (I know, like my personal inner feelings aren’t boring enough now I feel the need to analyze them?!?!?) but for now, I’m going to end this journal entry with some photos. This is Memorial Day weekend here in the US of A, which means that Monday officially marks the beginning of summer. (Technically, I think summer doesn’t begin until June 20, and here in Georgia, it’s been summer-weather for over a month already, but I’m sticking to the holiday time-frame for ease of record-keeping purposes!) Many, many thanks to those serving (and those who have served) in the military.



Summer is a’coming, and this is how we spend it in middle Georgia!


Brayden and Kellen enjoy what is officially known at our house as our "poor man's pool".



"Holy Crap, it's cold in here!"



"Yeah, well, it's not as cold if you only stick your face in."



"For only fifty cents a day you could provide three nutritious meals to this starving child -- look at his bones sticking out!"



"Well, who cares if I'm skinny? When the sun is shining warm on my face and the water is cool on my body, that's all I need to be happy."



Ah, the fun of being a kid!


I hope you all have a great holiday weekend (at least what is left of it.) We are hoping to take the kids' fishing tomorrow, if the weather holds up, so the next pictures I put up will most likely be of Brayden catching a fish, Kellen squealing like a girl and refusing to touch it, and Kendrie rolling her eyes and baiting the next hook.

Thanks for checking in, Kristie

PS. Happy one-day early anniversary, Blaine. I'll be honest --- the first sixteen years were a lot more fun than the last two. Irregardless, I love you, picc line and staph infection and all. But let's work on the "getting better" and healthy-living thing, ok? :)

KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Um, really nothing. I'm feeling pretty good today!

BEST PART ABOUT HAVING CANCER TODAY: I get to go to a birthday party for my cancer-buddy Jacob! Who knew that getting leukemia would mean I would actually make MORE friends???! Please go to Jacob's site and wish him a happy birthday!

Melancholy

202 Days to Go

melancholy: 1. a gloomy state of mind; dejection 2. thoughtfulness; pensiveness 3. a condition of depression and irritability formerly attributed to an excess of black bile 4. affected with melancholy; depressed; a melancholy mood.

“Crazy’ by Seal is the song I always put on this site when cancer is messing with my mind. Before you jump to any horrible assumptions, let me be quick to reassure you that Kendrie is fine …. Obnoxious and ornery and fabulous as always. *I*, however, am feeling a bit of melancholy. I’m pretty sure it’s not due to an excess of black bile, so I am much more quick to point the finger of blame at cancer. Specifically, leukemia. Even more specifically, Relapsed Leukemia.

I received the sad news yesterday that another little boy I know with leukemia has suffered a relapse. I say “another” because he’s not the first patient who has relapsed in the past few weeks. Sadly, he’s not the second, either. Or the even the third … he’s the fourth child I know of in the past five or six weeks. And those are only the kids I know from my online list and/or my clinic. Excuse my French, but WTF???

I understand that there isn’t anyone to BLAME …. But I need somebody with whom I can be upset!

(Step 1. Melancholy
Step 2. Anger)

And I wish I could find a way to express my deep-seated well of fear that we might be next. Shoot, that *anyone* would be next is depressing. Even more depressing is that it WILL happen, to someone. Until there is a cure, no child is “safe” or “well” or “guaranteed” a happily ever after. Sailing through treatment doesn’t count for anything, hell, **FINISHING** treatment doesn’t count for anything, just ask Clare from Maryland. Like I’ve said over and over and over …. cancer can come back anytime, in anyone. Leukemia, neuroblastoma, sarcoma, medulloblastoma, rhabdomyosarcoma.... I sometimes feel like I will never take a relaxed, deep breath again. Unless you hook me up to a nitrous oxide canister, then maybe I could just breathe deep until Kendrie is 60 years old and I no longer have to worry about a relapse for her. That might be preferable to the worry that constricts my throat and my heart sometimes until I can hardly breathe at all.

Thankfully, that fear isn't something I always carry around like the bags under my eyes. Most days we are a normal family (much like the Adams family is normal) doing normal things (which pretty much means arguing and bickering) thinking normal thoughts (like how many more days until the kids are back in school?) Most days, anyway. But it's always there in the back of my mind, a teeny-tiny niggle that I just can't get rid of, like the insufferable relative who shows up uninvited at a family reunion and as much as you try to ignore them .... there they are .... sitting in the corner ....smirking at you ... and they're just not going away.

You know the other thing that annoys me? I don’t mean to sound ungrateful and I certainly don’t want to look a gift horse in the mouth, but Caringbridge’s new policy about “No linking CB sites” anymore frustrates me to no end. These relapse families NEED support, and encouragement, and well-wishes. Sure, I can list them in this journal and leave the sites up for a few days, but once I update the journal, the links are gone. Since we can’t leave anyone’s CB address up on our site permanently, or with an easy link, it’s extremely difficult to offer the kind of virtual support that I KNOW is out there …..

I sure hope SOMEBODY at Caringbridge is listening to the frustration….. parents are saying the visits to their child’s sites are less and less; fewer guestbook entries … I’ve certainly noticed a drastic decline in the guestbook entries on Kendrie’s site that start out “I know you don’t know me, but I found your site on so-and-so’s site …..” Personally, I loved those and am sorry that doesn’t happen much anymore. Caringbridge has announced it will be unveiling some "new and improved" technology changes on June 1st .... I sure hope they address this problem and realize the vast majority of Caringbridge families do NOT like the new policy! (grumble grumble)

I DO, however, appreciate those of you who have us book-marked and continue to check in and leave us messages of support. If you’re going to leave a message today, though, please visit one of these other sites and let them know you heard about them through Kendrie’s site. I’m sure they would all be happy to hear from you. As awful as it is to be told your child has cancer, every parent I know who has gone through a relapse says it is a hundred times worse when you hear *those* words. The first time is terrifying, even with your blissful ignorance. This time, they KNOW what these precious kids are in for.

Victor from Pennsylvania, who relapsed last February, but just had his transplant two weeks ago and is thankfully doing well so far! I'm sure they are tired of being in the hospital and could use some words of encouragement. Even with Victor doing great, it's been a long road to get here and they still have a long ways to go.

Cameron from Connecticut, relapsed last year and had a bone marrow transplant with his brother Chad as donor. One year past transplant, this April, Cameron's family found out he relapsed again. Please drop Cameron some well-wishes!

Caleb from Washington, just started his re-induction this past week for his relapse that happened earlier this month, only four months away from finishing his final chemo. So, three years of chemo down the toilet .... Caleb starts over on a tougher protocol. I'm sorry, but that just sucks.

Clare from Maryland, who also relapsed earlier this month after sixteen months off-treatment. Clare had been done with her treatment for almost a year and half, and BAM, out of nowhere, the leukemia comes back. I can only imagine her family had just started relaxing ....

Jake from Georgia This is the one I'm having the most trouble swallowing today, simply because I just found out about Jake's relapse yesterday, and also because Jake is the one kid on this list that we have met personally. We've visited with his mom and dad in the clinic on occasion, and oohed and aahed over his adorable baby sister. They are reeling, and Jake is scheduled for his BMA on Friday to find out the severity of the relapse (like *any* relapse isn't severe?) But I know they are praying for no bone marrow involvement .... as we all are. If you can go to Jake's site, there is a guestbook link just like the Caringbridge sites and you can leave his family a note of support, as well.

There are so many other kids on my online list who are following relapse protocols. Fortunately, most are doing well. I have to remind myself that even with a relapse, leukemia still has a good chance of being beaten. For certain other types of pediatric cancers, a relapse is a death sentence. Leukemia is not like that .... but the path that lies ahead for these kids is not an easy one and I doubt any of the parents are sleeping too restfully these days. Please help lighten their loads by letting them know you are thinking of them.

Thanks,

Kristie
*******************************************************
KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Hello?! Did you read that note??? I am not even sure what all that means, but I know it's pretty crappy.

BEST PART ABOUT HAVING CANCER TODAY: My mom felt so sorry for the school nurse and the fifty bazillion times I went to her office this school year that we took in a bouquet of flowers for her .... I think she really liked them. That made me feel happy.

"I WANT TO RIDE MY BICYCLE……"

207 Days to Go

Kendrie and I got to take part in a fun event not too long ago …. The Tour De Georgia Bike Race, which rolled through Macon recently. Dodge Tour de Georgia® is an annual, world-class, professional cycling stage race and series of city festivals across Georgia. Proceeds from the event benefit the Georgia Cancer Coalition, a statewide network of people and organizations working together to fight cancer. Dodge Tour de Georgia is sanctioned by the Union Cycliste Internationale and USA Cycling.



Now, by saying we “took part” I certainly hope you don’t think I meant we rode bikes --- first of all, I don’t even OWN a bike and I doubt Kendrie’s would be allowed since it still has training wheels on it. These were REAL cyclists ….. Lance Armstrong, and, ....um, ....well, other guys who are in the same league as Lance Armstrong. (PS It’s *really* tempting here to make a snide comment about Sheryl Crow being draped over him like a cheap suit, but out of respect for all he’s done with his Live Strong campaign, I’ll hold back.)



As mentioned above, the beneficiary of the race was the Georgia Cancer Coalition, which leads Georgia's comprehensive cancer initiative, uniting people and organizations to work together to save lives and reduce suffering from cancer. The Coalition held a Health Expo at each of the city sites, and when they came to Macon, we helped out in the CureSearch tent.


Kristin Connor, CureSearch representative; Jenny, Ryan, and Jacob, who wouldn't peek out from around his balloon; Kristie and Kendrie, and Jill George, Executive Director of CURE.

CureSearch represents the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF), two organizations united by a common goal: finding a cure for childhood cancer. As partners in this search, each arm of CureSearch has vital responsibilities covering research, care, advocacy, and fund-raising. The shared vision of the CureSearch National Childhood Cancer Foundation and the Children’s Oncology Group is to reach the day when every child with cancer can be guaranteed a cure. Did you read that? “Reach the day when every child with cancer can be GUARANTEED a cure” ---- that is pretty much music to my ears.

CureSearch has year after year received the HIGHEST rating from the charity watchdogs. 94 percent of all monies raised go straight to research and education efforts related to childhood cancer (and nothing else). Only 6 percent goes to administrative costs.

If you know anything about charities, that is an amazing percentage. 94 percent goes to help find a cure for PEDIATRIC cancer. That, in my opinion, is heartening, and I’d like to ask all of you to visit the CureSearch website, to see if there is any way they can help you, or any way you can help them.

There are links for donations, ways to advocate, volunteer opportunities, sponsorship opportunities, information for families and patients, their annual Gold Ribbon Days, a community events calendar so you can look for happenings in your area, a Kids for CureSearch program so kids can help, they sponsor a Young Artists Program for kids with cancer and the siblings of kids with cancer ……. Lots and lots of neat things happening with CureSearch. You might have heard about the Major Baseball League Commissioners Initiative Fundraiser they organized last year, or this years Million Message goal, or the Hyundai Hope on Wheels fundraising/awareness project that is currently taking place across the country.

Also, CureSearch has a gift shop on their site under the “How You Can Help” link. They offer green wrist bands with a “Reach the Day” message, apparel, gifts and stationery. What I want to share with all of you today are these great t-shirts they have available. We got ours, like I mentioned, when we worked in the Cure Search booth at the Bike Race. I’ve purchased a few to give as gifts …. And I have to tell you, I don’t think I’ve seen anything that sums up my feelings any better.


Front of shirt


Back of shirt


I strongly encourage you to visit their website. Whether you are a patient or family member, or someone who simply would like an opportunity to help fight and defeat childhood cancer, CureSearch has something for you. (No, I’m not a paid spokesperson; I just believe in what they are trying to accomplish!)

Hope you all have a great weekend,

Kristie
************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Can you believe, can you even believe, that I have a stinkin’ ear infection? I’ve been fussing for a day or two so the old people in my house broke down and took me to the doctor this morning …. And now I have to take yet another yucky medicine for the next five days …. Wow, does that blow or what?

BEST PART ABOUT HAVING CANCER TODAY: Well, at least I should be all better by my next t-ball game …. Good thing, because no one can hold down that shortstop position better than me! I also do a good job of rearranging the dirt by my feet when I’m a little bored, but overall, I’m paying pretty close attention.

OH, AND YOUR AGE IS SHOWING: (This is Kristie “talking”) I took the kids to their elementary school Variety Show last night, where the teachers, staff, and a few of the students do talent-type routines and put on a performance … it’s a fundraiser for the Student Council. Last night’s theme was “Let’s Go To The Movies” and they had each grade level do a song/dance performance for movies from different decades. Ie, for the 50’s it was a song from Grease, for the 70’s it was a song and dance from Saturday Night Fever, etc. Well, up popped “The 80’s” on the screen, and the next thing you heard was ……………”Just put those old records on the shelf” ….. and the vice-principal slid across the stage in his big white shirt, sunglasses, white socks, and boxer shorts, a la Tom Cruise in Risky Business. The majority of the audience were parents, so we of course were cracking up (it would be even funnier if you actually KNEW this man!) and Kendrie turned to me, horrified and laughing at the same time, and squealed, “What is he thinking??? He doesn’t have any pants on!”

What a sad, sad world we live in when my own kids are so young they have no appreciation for that classic scene from Risky Business…… truly, cinema at its finest. Personally, *I* thought it was a hoot.

THERE *ARE* ADVANTAGES, AFTER ALL ………………..

211 Days to Go


The Top Six Advantages to Having Your Cancer-Kid Come Home From School, Fatigued and Nauseous:

1) She can keep your fatigued and nauseous husband company.

2) Perfect excuse NOT to clean the house; I can’t run the vacuum when she’s napping.

3) Perfect excuse NOT to run those pesky errands; a nauseous child doesn’t want to be driving around in the car.

4) Perfect excuse NOT to exercise; I can’t be stuck on the treadmill in case my poor baby needs me.

5) Perfect excuse to order take-out dinner; the smell of cooking might upset her stomach.

And lastly,

6) Did I mention it was a perfect excuse not to exercise?

So, because I love my daughter more than anything, after the school called at 11am today to tell me Kendrie didn’t feel well, I drove there to pick her up and decided, although it would be a sacrifice, it was my duty as a caring, loving parent to sit next to her all afternoon on the sofa, reading my Harry Potter book while she rested, and I’d probably need to eat an Otis Spunkmeyer Chocolate-Chocolate Chip muffin while we quietly passed the time together. And I thought about the advantages that would provide, as listed above.

Imagine my surprise when I got to the school and discovered Kendrie in the cafeteria, three quarters of the way through her hot dog, laughing with her classmates. I pulled her out in the hallway and we had the following conversation:

Mom: “Kendrie, I thought you called Mommy because you didn’t feel good.”

Kendrie: “No, I feel ok”

Mom: “So why did you call Mommy?”

Kendrie: “I just missed you and wanted a hug and a kiss.”

Now really, how can you be mad at that? Especially when you realize that by the time she reaches Brayden’s age, there will be eye-rolling and shrugging of the shoulders and absolutely NO p.d.a. from a parent of any kind. But best of all, the half hour I spent at the school, finishing Kendrie’s lunch period with her today, meant that I *STILL* didn’t have time to exercise!

Hope you are all having a great week!

Kristie
********************************************************
KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: My worst thing today is actually what is happening tomorrow --- driving to Atlanta for a needle-poke in my chest, chemo, and the beginning of Steroid Week …. Aaagh! That BETTER not mess up my t-ball game tomorrow night!

BEST THING ABOUT HAVING CANCER TODAY: Who knew my mom would drive up to the school just to give me a hug??? (Although something tells me she would do it for Brayden and Kellen, too, and cancer doesn’t really have anything to do with it.)

Holding Out For a Hero

214 Days to Go

HEROES come in many shapes and sizes. For most of us, when we are very young, our first hero is a mom or dad (depending on which one actually kills the spiders in the bathroom, kisses away the owies, and can get the lid off the jelly jar). Then, most children move into the more civic-minded phase of holding up police officers and fire fighters as heroes. My dad was a fire fighter, so I was lucky enough to be able to combine the two. (But mom was the one who could get the lid off the jelly jar!) Then, I sort of skipped the pre-teen/teen phase of looking to sports figures and celebrities as heroes. Sure, I’ll admit I had a small poster of Scott Baio on the wall of my bedroom (Hey, in those days, he was a grade-A, certified FOX!) but I was never over-the-top for anyone like that.

One of the questions on my 10-year high school reunion survey was to list my hero. That, and the question, “Who is the one person, living or dead, that you would most like to meet?” …. Well, those questions have always been difficult for me to answer. There might be a celebrity or two I enjoy, or a historical figure I think it would be interesting to meet, but no clear-cut HERO figure has ever stood out for me. And especially to be asked to narrow it down to ONE. If I hail Jonas Salk for his polio vaccine, does that diminish Benjamin Franklin’s electricity? To say Ghandi was the greatest peacemaker of all times seems somewhat insulting to Mother Theresa, know what I mean? And while I might not be Catholic, I’m still not taking any chances by being disrespectful about the most important nun I’ve ever heard of.

Fortunately, the world of pediatric cancer is one place where it is not only OK, but wonderful to have more than one Hero. Having a few hundred or thousand to rally around you can certainly be uplifting at times!

First, of course, are the kids themselves. I know all of you are already inspired by these kids and all they go through, or you wouldn’t spend your spare time browsing Caringbridge sites and offering notes of encouragement. So, I won’t dwell on that except to say Kendrie is indeed my hands-down hero in this whole mess. Even when she’s whining about taking her meds, because I know she’ll eventually suck it up and take them each night. And she knows she will, too, but sometimes in life a little pre-medication whining is simply in order.

Secondly, where would any of our kids be without the medical staff that takes care of them, plowing along with our families through this un-chartered territory? Sometimes it’s even un-chartered for them ….. but if you are lucky and have doctors, nurses, nurse-practitioners, anesthesiologists, therapists, child-life specialists, technicians, radiologists, pharmacists, etc etc etc that you like as much as we like ours, its makes the entire journey a lot more bearable. We still have seven months of treatment to go and I’m *already* stressing over what I can possibly do or make or buy or beg or borrow or steal at the end to show all these people how much I appreciate what they have done for Kendrie. If any of you have any suggestions, please leave them in the guestbook --- I am all ears.

Thirdly, and what I want to talk about today, are the people who aren’t in the medical field, but who still feel called to HELP in some way. I had no idea when we began this adventure of ours, how many kind, caring, compassionate people there are in the world. It’s always been hard for me to ask for help. I was the kind of kid who would walk home from school before I would ask for a ride. As an adult, I’ve gotten better (ie, lazier) and asking for help isn’t quite as awkward, but I still hate to do it. I’ve learned, however, through our experience with leukemia, that there are people out there who really want to help and just need to be pointed in a direction. Others have a direction already and have done things for our family that I didn’t even realize we needed!

We have been helped by so many charitable organizations that I am almost embarrassed, except that each one has been fabulous and none of them have made me feel like they were offering charity. Perhaps that’s the mark of a truly great hero --- someone who does something for you without making you feel awkward or indebted. The least I can do is mention some of them by name and make public my thanks to all of them.

Supersibs!, whose mission is to honor, support and recognize brothers and sisters of children with cancer. Brayden and Kellen have gotten lots of neat care packages from Supersibs, and have been made to feel special during a time when they might otherwise have gotten overlooked. If you have a child with cancer who has siblings, consider signing them up for Supersibs. If this sounds like an organization you would like to support, please visit their website for opportunities. Brayden and Kellen are definitely heroes in their own right, considering how their lives have been spun and changed and oftentimes put on hold, through no fault of their own, and I think Supersibs! is a great organization to recognize that.


The Lighthouse Family Retreat If you’ve been following our website since last summer, you already know about our wonderful week at the beach courtesy of the Lighthouse. Their mission is to serve children with cancer and their families at a seaside retreat and help them to laugh, restore family relationships, and find hope in God. Words can’t describe how great that week was. I strongly encourage you to visit their website and learn more about the amazing people who have dedicated themselves to this ministry. Also, poke around the site a bit for some great photos of a *certain* family enjoying themselves last summer …. especially one extremely flattering photo of a certain someone, who shall not be named (Blaine) in a grass skirt and adorable coconut bra. Blaine and I hope to someday return to the Lighthouse as Family Volunteers, but I’m afraid the coconut bra picture might deem us (well, HIM, anyway!) as mentally unstable.

Camp Sunshine provides recreational, educational, and support programs for children with cancer and their families, and provides them an opportunity to develop friendships with others experiencing similar challenges, to participate in activities that promote normal childhood development, and to assist in their fight against cancer. Camp Sunshine has been a big help to us, not only allowing us to enjoy thier twice-yearly Family Camp Weekends and various family activities, but also providing us with a local area support group these past six months, which has been great for us, and also serving as a way for us to connect and keep in touch with quasi-local families who are experiencing the same things we are experiencing as a cancer-family. If you live anywhere near the Atlanta area, you should really check them out.

The Make A Wish organization, who facilitated Kendrie’s wish trip to Disney in February. Despite how it might have appeared in my journal entries telling about the trip, I do not hold Make A Wish directly responsible for the complete and total decline in manners and behavior my children experienced during their stay in Florida. I haven’t quite decided WHO exactly I *do* hold responsible, but I’ll let you know when I find someone or something to blame.

Give Kids The World, the amazing resort where we stayed for Kendrie’s wish trip ….. Give Kids the World (GKTW) is a 51-acre, non-profit resort that invites children with life-threatening illnesses and their families to spend a cost-free, week-long vacation in the central Florida area. Those are the “official” stats for the resort --- but what it really is, the spirit and kindness and generosity that was shown to our family there, can’t easily be put into words. After we volunteer back at the Lighthouse, volunteering at Give Kids the World is next on our list. Magical. Truly.

Here is a perfect example of a Hero born out of an otherwise intolerable situation. Grianne Owen’s son Killian passed away from leukemia --- determined to help battle on, in his honor, she came up with Coaching for The Cure. The idea is simple. At the end of every sports season, the team parent generally takes up a collection of donations from the parents to buy a gift for their coach. What "Coaching for the Cure" offers is a way to donate those funds in honor of the team coach. By going to the website and printing out the donation form, Team Moms everywhere can help "Kids Kick Cancer"! Coaching for the Cure accepts the financial donation in honor of the Coach and sends a T-Shirt and certificate to be presented to the coach by the team. Coaches help and inspire their youth and what better way to teach the invaluable lesson of helping others than by the example of giving! Coaching for the Cure has signed an agreement with Curesearch (formerly the National Childhood Cancer Foundation) to launch the idea nationally in January 2005.

"While survival rates have increased in the last forty years, 1 in 4 children (some studies show 1 in 3) diagnosed with cancer still do not survive. This is particularly intolerable when doctors are now saying it is possible to find a cure for childhood cancer in our lifetime if we have the funding needed to support the research being done. With your support, we can turn childhood cancer from a killer disease to a curable one! Please join our team and help us Kick Childhood Cancer! If you have kids who play on organized sports teams, this is a great way to help --- become a HERO yourself!"


CURE Childhood Cancer was founded in 1975 as a non-profit organization dedicated to conquering childhood cancer through research, education and support of patients and their families. "Until there is a cure for every child diagnosed with cancer - CURE will be there." This is a great resource for families with diagnosed children and I highly recommend you check out their website.

Candlelighters Childhood Cancer Foundation is committed to the mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them. This is another great resource for parents of kids with cancer, or anyone looking for information. We received several free publications at the time of Kendrie’s diagnosis which helped us a lot, and you should visit the site to see what they have to offer.

As you might remember, we took part in the Leukemia & Lymphoma’s Society Light the Night fundraising walk in Atlanta last October, with our team raising close to $4,000. The Light The Night® Walk is The Leukemia & Lymphoma Society's nationwide evening walk to raise awareness of blood cancers and funds for cures. Participants carry illuminated balloons to celebrate and commemorate lives touched by cancer. Funds raised support the Society's mission: cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

There’s a little bit of controversy within the world of pediatric cancer and the fact that the vast majority of funds raised by LLS go towards research to cure adult cancers. The same controversy surrounds the LLS’s other major fundraiser, Team in Training activities. I’m not going to quote the actual percentages, because it’s depressingly low and that’s not the goal of this journal entry. I understand the stink …. and naturally I wish more of their funds went towards pediatric cancer research. But I consider LLS to be a “roundabout” hero and believe that any money raised will help in some manner….. also, I think that knowledge gained through adult cancer research can hopefully be applied towards our kids, to help them fight their battles as well.

Another "round-about" hero, in my opinion, is the American Cancer Society, whose Relay for Life walks are currently taking place all over the country. Relay For Life is a fun-filled overnight event designed to celebrate survivorship and raise money for research and programs of the American Cancer Society. During the event, teams of people gather at schools, fairgrounds, or parks and take turns walking or running laps. Each team tries to keep at least one team member on the track at all times.

Again, the stink is that the ACS only donates a minuscule percentage of its funds to pediatric cancer research. Just like the LLS, the reasoning is that cancer strikes more adults than it does children, so the vast majority of the money should fund adult cancer research. I understand that, but as the parent of a child with cancer, it’s very discouraging. Again, that’s not what I want to dwell on.

I thought I would share with you some photos of our local Relay for Life event that took place Friday night. The elementary school that my children attend put together a team of teachers and administrators, and was kind enough to include Kendrie, another student at the school who had AML, a parent volunteer, and Blaine, as their “honorary” team cancer-survivor members. We had never taken part in Relay for Life before (shoot, I’ll admit it, before Kendrie got cancer I had never even heard of it!) but it was a very neat event last night and I’m glad we did it.



Now, I am not a particularly emotional person, but have to tell you how poignant I found the survivor’s lap to be. That’s the first lap of the walk, where survivors walk one lap around the track, to a continuous standing ovation from all the teams at the campsites. Naturally, I was running from one spot on the track to the next, trying to stay ahead of the walkers and hoping to get some good photos of our team. Our team was bringing up the rear (and I mean the VERY rear!) and when I saw them walking past, waving to the crowd, and saw how cute Kendrie looked, something just came over me and I welled up while I watched them walk past. In fact, for a brief moment, it occurred to me that half of the most important people in my life were walking a “Cancer Survivors Walk” --- how surreal is that? My husband AND my daughter. I’m sure I’m not the only one in that unique position, but it was emotional for me, nonetheless. For about half a minute … then I had to run ahead to get another photo.



But my opinion is that even though the ACS and the LLS often receive a bad rap in the pediatric cancer world for not doing enough to help our kids ……… the thousands and thousands of “normal” people who walk the laps, and run the marathons, and ride the bikes and swim the lakes and hike the canyons and raise the money ---- THOSE people are Heroes, too!

Along those lines, I have a few individual people I’d like to spotlight, and one more organization, but that’s going to have to wait for the next journal entry. I’m worried this one is so long I’m going to blow out the Caringbridge servers as it is.

Mainly, I wanted to let everyone know that we appreciate all that our heroes, known and unknown to us, have done to make our lives easier these past two years.

Hope you are all having a great weekend,

Take care,

Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

Today was a pretty good day, although I was tired and grumpy from being out so late last night at the walk. Plus, mom bought me a blinky-light-necklace at the race last night and the cheap piece of crap didn’t work today. Ugh. And I was tired from doing that walk -- I don’t think I want to go back there ever, ever again.

BEST PART ABOUT HAVING CANCER TODAY:

Hey! Brayden found the battery that fell out of my blinky-necklace right before bedtime! How cool is that?? Now it works again! I LOVED that walk and can’t wait to go again and buy another necklace next year!

WOW, WHAT A DIFFERENCE A YEAR MAKES!

220 Days to Go

I know, I know, I’ve used “Wow, what a difference a Year Makes!” as a journal title already …. probably more than once, if anyone's keeping track. But when the treatment for childhood leukemia lasts 26 months (and that’s your BEST case scenario!) well, you’ve got *several* chances to compare snapshots in time, a year apart.

So speaking of snapshots, today’s journal entry will be primarily photographic. Not because I don’t have a lot to say (when do I NEVER not have a lot to say?) but because I want to get these recent pictures put up on the site. Then I’ll update again in a day or two in my usual lengthy, wordy, ongoing, Good-Heavens-does-she-ever-stop-talking-manner.

So, as a preview, check out this picture of Kendrie taken one year ago, when she attended Field Day at her brother and sister’s school in May of 2004:



How pathetic is that? She was seven months into her treatment, which means she was right about at the end of her Interim Maintenance #2 phase. Bald, fatigued, nauseous and miserable. Not since the time I took Blaine to a scrapbook store have I seen a person LESS interested in their surroundings.

Now, check her out as a participant in THIS year’s Field Day extravaganza:





Jesse Owens, eat your heart out! Have you ever seen such baton-passing skill???




I don't know whether to be impressed or amused by the look of concentration on this face!




And of course, because no Pre-K activity or event would be complete with Kendrie's boyfriend Nicholas by her side .... the requisite picture of the happy couple.


In case her athletic prowess isn’t evident enough, what with the Field Day photos of all the baton passing and ball bouncing and what-not, check out her t-ball skills from the first scrimmage of the season:



Running to first base after her turn at bat. I love the image of the kid in the background, falling down trying to field her ground ball. That's a pose that happens a LOT in t-ball!




Crossing home plate, to the roar of the crowd ...... (or at least the enthusiastic clapping of one middle-aged mom with a camera around her neck)




"Hey, as much as I like the hitting and the running part, I have to admit that tagging these guys out at first base is kind of fun .... maybe *defense* is my thing!"


So, if you are really, really, really, really, really lucky (and we are) this is what nineteen months of chemotherapy treatment for leukemia looks like. Happy, healthy, pink cheeked and glowing. In case you hadn't realized, kids fall on both ends of the spectrum with regards to side effects from these treatment protocols. Obviously, even with her occasional nausea and fatigue and bone and joint pain, Kendrie is WAY at the good end of the spectrum. Way. As in freakishly-way. We understand that the effects from the various chemos are often cumulative and we still have seven months to go. Don’t think for one second we don’t count our blessings every day. We do. And one of our biggest blessings just learned to tag first.

Hope you all had a great Mothers Day!

Love, Kristie

PS. If you have a spare second, please visit our friend Caleb’s site. Caleb was diagnosed with leukemia in July of 2002 and has been on chemotherapy for almost three years. Remember when Kendrie said boys get an extra year of chemo because they’re stinky? Well, the real reason is because the testicles are a sanctuary site for leukemia cells and the extra year of chemo is to make sure none of the cancer cells are hiding there. Unfortunately in Caleb’s case, they were, and he has “officially” relapsed, only four months away from being done with treatment.

That’s the thing about this disease that is so frustrating and frightening to me. You can take your medicine just like you’re supposed to, never miss a dose or a day, do everything your doctor tells you to do, avoid all the germs and never skip a doctor’s appointment and wash your hands and everything else …. And BAM, sometimes the cancer comes back anyway. It doesn’t matter if you’ve completed a month of chemo, or six months, or a year, or two years, or even if you’ve been off-treatment for a few years. There is no 100 percent guarantee that what we are doing is going to be enough to keep the leukemia away forever, and that just sucks. It’s random, and it’s terrifying.

Sucking even more for Caleb and his family is that his dad is currently serving in Iraq, so please say a prayer, not only for Caleb’s health, and Caleb's doctors and family as they make some difficult decisions regarding his care, but also that his Dad is able to travel safely back and be with his family. I’m sure they would appreciate some notes of encouragement if you have time to sign their guestbook. I know we love it; I’m sure they would, too.

Hey, it's not my fault!

224 Days to Go!

I made an amazing discovery this past weekend. Despite what I might have previously thought about genetics, laziness, personal responsibility, and an inability to push away from the dinner table, it’s not my fault I am fat. The Air Force is totally to blame. Or, to be more specific, the commissary. And not for the reason you might think …. the fact that whenever I shop the cookies and candy and junk food has a tendency to fly right off the shelf and into my cart …. No, the reason is much more sinister and under-handed. It’s those damn “Work for Tips Only” baggers.

As anyone who has ever shopped in a military grocery store knows, baggers work for tips only. A fact they bring to your attention over and over with at least a dozen signs on every check-stand and notices plastered all over the doors. Since I shop with a credit card and rarely carry cash, I often find myself at the commissary, frantically digging in the seat cushions in the van for spare change. That’s embarrassing, so I try to remember to carry a few dollars whenever I go.

Last Sunday I got to the commissary and realized all I had in my wallet was a twenty dollar bill. I don’t care *HOW* friendly and helpful the bagger might be …. short of doing the shopping FOR me, there’s no way I’m tipping someone twenty bucks. So I drove over to the BX to find something, anything to buy, to break my twenty. But since it was a Sunday morning, nothing was open. Nothing except the kiosk selling heaven on a plate: Cinnabon. Sure, I know what you’re thinking ….. I could have just bought a small coffee and gotten change --- but I don’t *drink* coffee and that seemed wasteful. And I certainly could have bought a diet soda and simply been on my way. But there stood the cashier at Cinnabon, who had been “Baking Fresh Daily” (I know that because I can read other signs, too, in addition to the “Baggers Work For Tips Only” signs) and there was no way I could NOT get a cinnamon roll …. She was so friendly, so customer-service oriented …. Plus, I'm pretty sure they lace the air surrounding the kiosk with some sort of opium additive or something. To NOT buy a cinnamon roll seemed rude, almost insulting. And to buy the roll and then throw it out, well, anyone who knows me knows THAT ain’t happening. So I bought the roll. To break the twenty. To get some change. To tip the bagger. Who works for tips only. Because that’s the way they do it at the commissary. So it’s the Air Force’s fault that I’m fat. If I didn’t have to tip the bagger I wouldn’t have to eat the roll. And for the record, I did not enjoy any part of the cinnamon roll. Even the yummy, gooey icing that I practically licked off the plate.

And as more evidence, check out the comment Kendrie made to me the other night: I was sitting in the living room with all the kids while Kellen showed us his muscles. (A favorite pastime of his; I have no idea why.) So then Brayden had to show her muscles, and then Kendrie. They asked to see my muscles, and as I raised my arm in my sleeveless shirt, Kendrie pointed to the flab hanging off my arm and said, “Oh, look, Mommy’s got muscles in the BOTTOM of her arm!” (To add insult to injury, Blaine has LOST fifteen pounds in the past month due to his surgeries ……………….. bastard. I won't have to look hard to find them.)

Other comments made by Escoe kids this week:

I made a new brunch casserole this past weekend which Kendrie obviously didn’t like, based on the terrible, scrunched up face she was making as she choked down the bites she was required to eat before being allowed to leave the table. I looked at her, and the awful face she was making, and said, “Do you really hate it that much?” to which she replied, “No, my face always looks like this when I’m eating eggs.”

Brayden, talking about a boy she has in her class: “You know how Kendrie is a girl but she wants to be a boy and dresses like a boy and we call her a TOM-boy? Well, J. in my class is a boy, but he acts like a girl and talks like a girl and says he wants to be a girl … so that makes him a Tom-Girl, right?” And all I could think was, “Honey, that is **SO** not what it makes him.”

And finally, my favorite, proof that our children are indeed watching us and listening to us when we’re not aware …… and you just never know what habits or comments they might begin to mimic and use for themselves. Kellen and Kendrie were in their bedroom last night, settling in to bed for the evening, when the dog must have passed gas …. You know, the heavenly aromatic fragrance of rose petals wafting in the breeze …. And Kellen said, “Eww, something stinks!” to which Kendrie replied with a giggle: “Maybe it’s your UPPER LIP!”

These kids crack me up.

Take care,

Kristie
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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Oh, this is SO easy. Last night was my first night of oral methotrexate since they increased my meds due to the roly-poly waistline I OBVIOUSLY inherited from my mother. So after taking my TWELVE pills last night, not only did I wake up this morning feeling crappy, and not only had my mom not refilled my Zofran prescription …. She wasn’t even home! Some crap about setting up for a Teacher Appreciation Breakfast. So Daddy had to take me to school, walk me to the nurses’ station, and get one of my zofran out of my school stash just so I could feel better before school started. Applications for my new mother figure will be accepted on Tuesdays after 4pm.

BEST PART ABOUT HAVING CANCER TODAY: Luckily she got the Zofran prescription refilled and I felt much better this evening … just in time for t-ball practice. My first scrimmage is Saturday; wish me luck! Can you believe there is a “no jewelry” policy and my mom had to get special permission for me to wear my medic alert bracelet? I guess on second thought …. She *does* have my best interest at heart, even if letting me run out of Zofran was a pretty big lapse on her part. She must have been daydreaming about a cinnamon roll.

Medical Mysteries of the World

(228 Days of Leukemia Treatment Left)

Thanks to all of you who responded so kindly about the wonderful journal entry penned for Kendrie’s site by Julianna Banana. It appears that I somehow missed the announcement that Julianna’s dad Terry’s birthday was this week, so if you have a second, hop back over to Julianna’s site and wish him a Happy Birthday. I’m not sure, but I think he’s 29 with 7 years practice.

So, getting back to the medical conundrum that IS my husband, let me catch you up to speed on his latest:

As you know, he went to the hospital for a routine follow-up ten days ago, and wound up admitted for surgery to remove the Blob-O-Crap that had developed in his post-surgical wound site in his lower leg. When I last left you, we were awaiting culture results to make sure he wasn’t growing any tropical diseases in there, and planned for him to be home in a day or two.

While he wasn’t harboring flesh-eating bacteria, it turns out that he DID, actually, have a staph infection in the site. And not just any staph infection, but a MRSA infection that is resistant to all front-line antibiotics such as penicillin. (Way to go, Blaine! Never settle for ordinary!)

Treatment for this type of infection is SIX WEEKS of twice-daily, heavy-duty IV antibiotic infusions. So he wound up having another surgery, to clean out the wound site again and have the surgeon nick off another portion of the tip of his leg bone …. just in case the staph infection had already spread to the bone -- which would be terribly difficult to treat -- they figured better safe than sorry and just sliced off another sliver of the bone. If he ever had considered donating his body to science, I’m afraid at this rate there won’t be enough of him left!!

They also inserted what is known as a PICC-line in his arm, a catheter of sorts that threads up the inside of his arm to the general area around his heart so he can administer the medication at home. The home health nurses are coming every few days to change the dressings, but it’s really a pretty easy set-up, just time consuming.

And that’s where he stands now; although the six weeks of IV therapy is, according to him, seriously cutting into his therapeutic post-op fishing time, his leg is feeling much better. I think with the Blob-O-Crap gone, the recovery will move along much more smoothly. But Blaine has already told me that he won’t be going to his follow-up appointment next week without an overnight bag packed!

So the entire process of events has left me with a few medical mysteries that I am unable to solve ………… maybe some of you have answers you can share:

**The fact that he not only has a staph infection, but has one that is resistant to 99.9 percent of all antibiotics ever manufactured --- does that make him an over-achiever or an under-achiever?

**Did the nursing staff really think they were helping him, when he asked for a razor, by giving him a surgical razor that ripped most of the hair out of one side of his cheek?

**Does the fact that I didn’t think to take him a clean pair of underwear when I went to pick him up mean I am a bad person, or just slovenly and thoughtless? Or how about the fact I thought to bring him a clean t-shirt, but then forgot and left it in the car?

**How can a fifteen minute exam lead to seven days and nights in the hospital, two spinal taps and a PICC-line insertion?

**When the doctor tells you, “We’re no longer worried about him losing his leg” ….. um, does that mean I *should* have been worried about that at some point? Because nobody told me to be!

**Why on earth, when I’m standing in the main lobby of the hospital with Blaine’s fresh cup of coffee from the cafeteria in hand, and he’s on the 9th floor, eagerly awaiting said cup of coffee, would there be a fire alarm at that very moment, rendering the elevators inoperable and requiring me to climb nine flights of stairs? Is that some kind of cruel trick of the Exercise Gods?

**Who decided Blaine must have his home-IV at 9 am and 9 pm every day, when the medication has to be removed from the fridge four to six hours beforehand to warm up to room temperature? Is anyone aware of what time that is???? And the infusions themselves each take about an hour and a half, so now he’s REALLY griping about the loss of fishing time.

**And one final medical mystery: Can someone tell me why, a reasonably bright person such as myself, who has a relative grasp on most of the daily functions necessary to lead a normal life, is apparently completely unable to tell time? Because see … here’s the deal. When I talked to Blaine’s doctor Tuesday night I asked him what time Blaine would be released from the hospital the next day. First of all, I think the medical staff at that hospital must assume we have some “in-name-only” sort of marriage, since I left him there by himself for the entire week he was in the hospital, having bones sliced and blobs cultured, undergoing spinal taps, and without bringing the man a clean pair of underwear. Never mind that the hospital is three hours from home and I have three children here, who on a daily basis, make constant, completely unreasonable demands for food and parental care and what-not.

So, anyway, the doctor told me Blaine would be able to come home by noon. “Noon, you say?” I double-checked, “as in 12 o’clock?? ….. because I have one girlfriend who is riding up with me, who has agreed to have someone watch her own children so she can follow us home in Blaine’s truck so we don’t have to leave it in Augusta, and another girlfriend who is not only picking my kids up from school, but offered to bring us dinner that night when we get back home. So, you said NOON, right?” Yes, Mrs.-You-Must-Really-Hate-Your-Husband-To-Not-Even-Show-Up-At-The-Hospital-For-His-Surgery-Escoe, he’ll be ready to go home by noon.

So the next evening, when we were walking out of the hospital at 6:15 pm, I’m wondering just where MY definition of noon and the MEDICAL definition of noon have swerved paths. My girlfriend Renee and I were there by noon …… Blaine was ready to go (more than ready, practically pacing the halls) yet it took over six hours to line up his home health care and get him checked out. Given as I had over six hours to think about it, this is the best explanation I can come up with:

(ahem::clearing throat::) When the doctors said NOON, what they really meant was HIGH NOON, as in, the sun at its zenith. Which, if you lived in Australia, would actually be midnight our time. And as everyone knows, midnight in Greek is referred to as “Illuminos”, which means “to brighten” and as is perfectly obvious, most people brighten up at the end of their workday, which for the average American worker, is 5 pm in the evening, so if you add the hour for the recent daylight savings time, THAT explains why Blaine wasn’t released until after 6pm. I mean really, how could I have been so stupid? It was SO blatantly obvious!

So anyway, my poor girlfriend Renee, who had told her babysitter (thank goodness for Grandmas!) that she would be home by 4pm, didn’t get home until almost 10pm. My poor girlfriend Kelly, who thought she was going to have my kids for an hour or two after school, not only got stuck watching them for seven hours, she had to feed them and do their homework with them to boot. The home health nurse came to our house to show Blaine how to start the infusions and didn’t leave until after 11pm. Then, the next morning, I had to get up at 5am to take Kendrie to Atlanta for her monthly chemo appointment …….. oh yeah, that’s right, we’ve got a kid with cancer here, too!

Funny, but that’s almost how it felt last week. Her nightly chemo was practically an afterthought each evening, after talking to Blaine and his doctors on the phone to find out what was going on there …. Fortunately, her visit went very well. This was one of the Every-12-Weeks appointments, meaning she also had a spinal tap (something else she and Blaine have in common now) in addition to her IV-medication (hey, yet another thing!)

Once again, her ANC was high (1900’s) but despite what I *thought* would happen, her oncologist did NOT up her dosages of chemo. Well, let me rephrase that. ALL of her chemo dosages were upped, but due to the weight/height gain that she has had in the past three months, and not due to her consistently high counts. The chemo medication amounts are formulated based on the size of the patient, so every three months they review her chart and recheck her growth, to see if she needs more drugs. Lucky us, this time she does!!! (The sarcasm comes into play because that means she’s on a higher dose of steroids this month -- woo hoo!)

I swear, the night-time medication ritual is often complicated, based on what day of the week it is, and is it a steroid week, or a week day or a week end, or a spinal week, or an oral methotrexate week ….. and just about the time we get it all figured out in our heads and are no longer obsessively double-checking the medication chart on the fridge ….. they go and increase the dosages!!! (OK, I’m kidding; we will obsessively double-check the medication chart until she is finished.)

And that rounded out our week in a nutshell. Blaine is suffering the common side effects of these high-dose antibiotics (night sweats and nausea ……. now he knows what it’s like to be peri-menopausal) and Kendrie is not yet launched into her Steroid Personality From Hell Behavior …. We’re battening down the hatches and hoping for the best. As for me, my only problem is the back strain I have from carrying around this debt of gratitude to Renee and Kelly --- you girls rock! Thank you! What would we have done without you both????

Thanks so much for checking in on us. I really enjoyed all the messages in the guestbook last week and hope you are all doing well, also!

Take care,
Kristie
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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Well, I was feeling a little hungry (steroids will do that to a kid!) and I knew Mom was cooking dinner and probably wouldn’t let me eat anything. So I told Dad that Mom said it was ok for me to have a snack, and then told Mom that Dad said it was ok, and then I ate me some Pringles before dinner! Alas, I heard Mom make a smarmy comment to Dad about “Why do I even bother cooking when you let them have snacks before dinner?” and I knew the jig was up. Sure enough, they caught on to my treachery. Damn! Parents united are never a good thing! Divide and conquer, I'm telling you, divide and conquer!

BEST THING ABOUT HAVING CANCER TODAY: It was raining here all afternoon and I was still feeling a little punky from my clinic visit, so I curled up on my bed and took the best nap ever! And because of the rain, I didn’t even miss any good outdoor playtime!

Notes from Julianna

(Note from Kristie: If you don't know who Julianna Banana and her dad Terry are, or what they represent to the world of CaringBridge, well, that's one big rock you're living under! You guys are going to get a kick out of the following journal entry ---- although I'll admit that now I'm a little worried about the security of my position as author on this site ..... would Caringbridge actually allow an overthrow just because he's funnier???)
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We interrupt your normal eloquently-crazed rantings for a Special Caring Bridge News Bulletin:

The ballots have been cast and burned, and the white smoke has billowed out the chimney. The Escoe Family has given in to my pleading and has agreed to let me commandeer this wonderful journal for one day. I’m Canadian correspondent Julianna Banana filling in for Kristie. If you’re looking for Kristie and Kendrie, well, you’re just going to have to slum it over at my Caring Bridge page where the Escoe gals have agreed to class up the place and update my journal for me.

So let’s get this party started the best way I know how…in song! Start humming the Brady Bunch theme song and please, please feel free to sing out loud in your chair with me.

Dada da dada da…

Here's the story of a lovely lady,
Who was bringing up two very lovely girls.
Both of them had hair of gold, unlike their mother,
The youngest one’s getting back her curls.

Here's the story, of a man named Blaine-y,
Who was busy with one boy of his own.
They were two men, clearly outnumbered,
Surrounded by chick hormones.

Till the one day when the lady told her fellow,
That the world must know of Kendrie’s non-stop steroid lunch.
So she started this up this page to share her family.
That's the way we came to know the Escoe Bunch.
The Escoe Bunch, crazy Escoe Bunch.

That's the waaay we came to love the Escoe Bunch!



As I said above, my name is Julianna Banana. I am a 4 year old button-cute girl fighting off the same kind of leukemia as button-cute Kendrie. My personal assistant/man-servant is my poor dad, who types for me as I dictate. I first had the good fortune of “meeting” Kendrie and her mom Kristie thanks to the wonderful ALL-Kids email discsussion group. Kristie joined ALL-Kids about a month after my parents did, and I’ll never forget those words from her first email…

“I’m trying to come to terms with my daughter’s cancer diagnosis. Are there any fat, balding men out there who can comfort me?”

Or something like that, I’m paraphrasing. Not long after that, Kristie started up this Caring Bridge page to help her spread out family and friends stay up to date with Kendrie’s treatment progress. Almost from the get go, the rest of the world could tell that this page was going to be a little, um, shall I say, “different” than the others!

One of the misconceptions about us pediatric cancer families is that we are fate’s helpless victims, that we need to be treated with kid gloves. We somehow become relegated to the sucks-to-be-them, “how are YOU doing” class (cancer families, you know exactly the tone I’m talking about). Well, there is some truth to that, but maybe not for the reasons that the “doesn’t-suck-to-be-them” people realize. Yes, fate kicked us in our collective groin. But this not-so-glamorous job of cancer fighting, particularly leukemia, isn’t always a 24-7 job. In between the clinics, chemo and hospital stays, there’s a whole bunch of living to do! Us kids, we still need to learn to read, we still need to paint pictures and eat glue, and we still need to make friends and play. And we still need to laugh! Yes, cancer changes our lives, but our lives are a lot more normal than you may think.

Enter the Escoes!

There’s no glamour in the steroid-induced 3 a.m. cheese run to Krogers. There’s no laughing when we won’t eat our 3:30 a.m. grill cheese sandwich because we wanted cheese SLICES. There’s no life lessons at the bottom of the 4:00 a.m. puke bucket.

Or is there? Somehow, when Kristie tells it, it IS glamorous, it IS funny, and there IS something profound that seemed to give purpose to it all! We relate, we relive and we connect. And, of course, we laugh. For every documented Kendrie adventure, there’s hundreds of people spread out across the globe saying, “oh don’t I know it, sistah!” And there’s hundreds more who no longer say “sucks to be them”, they read this journal and say “sucks to have cancer, but I bet I would totally do the same thing if my kid wouldn’t eat my grill cheese sandwich because I cut it into triangles instead of squares!” Kristie once told me that she re-read through her journal history, and to her, it seemed like all she did was complain about her kids. Far be it from me to disagree with my elders, but this journal isn’t a crab session, this journal is an entertaining and insightful transcript of an ordinary family living through extraordinary circumstances. It’s like a shelter for us pediatric cancer familes, it’s a place that we can feel normal.

It’s hard to believe that it’s already been over a year and a half since I first came to know of my long distance Georgia peach sister Kendrie. I guess time flies when you’re eating crap sandwiches!

Luv,
Julianna Banana


P.S. – By now you are probably thinking to yourself, “Hey, where’s the rest of this entry? Kristie doesn’t get out of bed for under 5000 words!” Just between you and me, I think Kristie must be on the juice to have as much digital endurance as she does. But you don’t have Kristie today, you’re stuck with me :-) If you want the major verbage, go check out the full screenplay that Mama Escoe wrote back on my page!

Found

OK, I'll admit that I was a little frazzled in my last journal entry when the hospital couldn't seem to locate Blaine .... he's a grown man in a revealing hospital gown, just how far could he have gone??? He told me surgery was first thing this morning and when he wasn't back in his room six or seven hours later, I started getting a little antsy. But let's examine the real reason why. In my paranoid, delusional world, the following scenario was playing out with startling clarity:

"Blaine goes in for surgery to remove a suspicious mass in his post-operative wound site. Come to find out, the reason I couldn't get hold of him in the hospital today is the surgery took longer than anticipated because it's not just a cyst, its an aggressive form of flesh-eating disease and in order to save his life, doctors have to amputate his leg at the knee. So he comes home and a few weeks later he's walking around on his new prosthetic leg. We go to dinner at Ryan's buffet, where his fake foot slips on some green beans on the floor and he falls on a salad fork, putting out both of his eyes, rendering him blind. So a few weeks after that he and I are shopping at Staples, him with his prosthetic leg and patches over both eyes, when he accidentally knocks his white-tipped cane into a display of office furniture, causing an extremely large and heavy bookcase to fall over and crush his internal organs, requiring a kidney transplant. A few weeks after the transplant he suffers an allergic reaction to the anti-rejection drugs, which causes his lung capacity to decrease to only 25%, which requires that we carry an oxygen tank with us at all times."

So this afternoon, when I couldn't track him down anywhere .... all I could think was, "I am too damn young to be married to a man with this many problems."

What *actually* happened was that his surgery wasn't until late morning, and there appears to have been a miscommunication with the nurse that Blaine asked to have call me after the surgery. The miscommunication being ... she didn't do it.

So although I didn't get to talk to anyone "official" from the hospital until 8:30 this evening, I did learn that things are ok. (I talked to Blaine earlier than that, but he was wonked out on so many pain meds that he doesn't count.)

He had a very large hematoma (fancy name for icky, gooey, gelatinous glob of blood) that had formed in the area where his lower leg bone used to be. Although they don't suspect anything will develop, they did call in an infectious disease specialist to do cultures on the mass to make sure it's not harboring any form of freaky bacteria or anything. We should have the culture results in a day or two. In the meantime he has a drain tube in his leg and is resting comfortably. Not sure when he will be cleared to come home, probably Monday or Tuesday.

I want to take a quick minute to thank all of you who are checking in and leaving notes of encouragement in the guestbook. I especially got a good laugh out of the comment about "now we know why our moms were always telling us to wear clean underwear every place we went" HA! :)

Thanks also to my local friends who have offered to help in various ways. You know who you are, you know *I* know who you are, and you know that I appreciate it.

PS. For those of you who somehow got the misguided impression that this website was dedicated to my daughter and her fight against leukemia, and not for the bizarr-o trials and tribulations of my husband .... let me just tell you that she is doing fine. Better than her old man, that's for sure!

Kristie

BOOM!!!!!!!!!!!!

(that is the sound of my head exploding)

Well, I'm *assuming* Blaine had his surgery this morning. I say this with some confidence, for a number of reasons:

1. Mainly, because he didn't come home last night.

No, I'm just kidding. I know the surgery was scheduled for today, but they can't seem to find him in the hospital. I keep calling, and calling ...... Same-Day Surgery has never heard of him (makes sense, since he is inpatient) .... Surgery Recovery is unavailable by phone .... no one is answering in his room .... the girl at the nurses desk on his floor says he left for surgery, but she's not sure when. In response to my query, "Well, do you have any idea what approximate time he might be returning to his room?" I received the highly intelligent reply: Huh-uh.

So, if anyone is in Augusta and sees a man, badly in need of a shave, limping along the parade route on Ft. Gordon Army Post with a drain tube hanging out of his leg ... tell him his wife is looking for him.

K.

HEAD BURSTING ALERT!! HEAD BURSTING ALERT!!

Remember a few entries back when I oh-so-sagely said if something exciting didn't happen soon I wouldn't have anything to write about???? Weeeeeeellllllllllll.......

Blaine, who is still home recuperating from his surgery, is in Augusta today (3-hours from home) at the Army base having his leg looked at. He left the house at 5am; it's now almost 5pm. He's been having it looked at every few days since the surgery because quite frankly .... well, I have no idea WHY the doctors are looking at it because it's disgusting. I swear every single time we go to the base hospital someone asks him what kind of land mine he stepped on because that's how nasty the scar/wound is. Blech! (PS and I mean absolutely no disrespect to the brave men and women serving in Iraq or places where they seriously have land mines. .... just making a comparison, that in hindsight, is probably inappropriate but I'm too lazy to go back and change it although as much time as I've spent typing this PS I could have just gone back.)

Anyway, a few nights ago the area of the skin graft started bleeding profusely (surgery was a month ago, so you'd think it would be better by now) and then two days ago his foot went numb. His surgeon in Seattle predicted a clot .... his doctors in Augusta suspect an abscess. His cat-scan from today shows a "suspicious looking area" (again, thinking abscess) but his white count, which should be high if he does indeed have an infection, is normal. What to do .... what to do? (sigh)

So, they are deciding (as I type this) whether or not to take him to the OR --- TONIGHT --- and operate on this suspicious abscess-y looking area. Bear in mind, they told him he would be in the hospital for several days, and he is three hours from home without a change of underwear or a toothbrush to his name, he forgot his cell phone, probably has no more than five bucks in his wallet, he has NONE of his medication, and *I* am scheduled to go out of town first thing Saturday morning!!!

So, it appears I will be spending tomorrow doing one of three things:

a) Dropping the kids at school and driving like a bat out of hell to bring Blaine his crap while he recuperates (alone in the hospital) after surgery .....

b) Saying the heck with it, it's a hospital after all, they can get him some replacement meds, and spending all day trying to find a sitter for Saturday since *MY LIFE* is the important one I don't want to disrupt ....

or

c) Watching Blaine sleep on the couch because they decided surgery wasn't necessary.

Pray for "C" people, pray for "C" !!!

Kristie