Saturday, April 30, 2005

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
******************************************************8
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!

Saturday, April 23, 2005

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???)
**********************************************************
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!

Friday, April 22, 2005

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.

Thursday, April 21, 2005

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

Sunday, April 17, 2005

DON’T GIVE AWAY MY PARENTING TROPHY … JUST …. YET ……

241 Days of Treatment to Go

OK, so, you know how I complain, in pretty much every journal entry, that my kids are spoiled rotten brats, but secretly I blame it on the steroids? (At least in Kendrie’s case …. I’m still trying to come up with a good medical excuse for Brayden and Kellen.) Well, that’s a concern of many cancer parents, I think, the dilemma over just how much we should let the little rugrats get away with because of all the crap they’re going through for such a long time. How much slack should we cut them? How much really, truly, IS a side effect from the chemo and the steroids and procedures? How much is normal childhood behavior? And how much is bad parenting? Or in my case, *lazy* parenting. There, OK, I said it out loud!! I AM A LAZY PARENT!!

Here are two examples from this past week, then I’ll get to my point. First, Kendrie came to me on Thursday morning and said she wanted to wear her “Bat Attitude” Halloween t-shirt to school. I had recently swapped the summer clothes and winter clothes out in the kids’ closets and she re-discovered this long-lost favorite t-shirt--according to her, anyway, it was a long-lost favorite. I said “Don’t be silly, it’s April, you can’t wear a Halloween t-shirt.” And she started whining. And complaining. And asking “Why???” (You have to make the droning, nasally, whiny noise in your head to really get the full experience.) And so I stood there and the lazy part of me thought, “Well, why not? It’s not like if she ruined it I wouldn’t be able to find another t-shirt for her to wear next Halloween, right? What's going to happen, the Halloween police show up and arrest her for wearing the shirt in April??” (That’s the lazy part of me, who just didn’t want to argue with her … pick your battles, right?) Then, the cancer parent, paranoid, anxiety-ridden part of me (that doesn’t surface very often, but when it does, it’s vicious) thought, “For all you know your worst nightmare could come true and the cancer could return and she won’t even be here next Halloween; just let her wear the shirt now while you know she can and make her happy!” So of course Kendrie, after the whining and complaining, got to wear the shirt. And I wonder why she insists on arguing about everything. Because Usually She Gets Her Way, that’s why! …. She’s not stupid!

Example #2: I spent an hour and a half in the commissary (grocery store on base) buying all sorts of nourishing and healthful foods for my family. My cart was so loaded down with stuff that I was balancing items on my head … like those Ugandan women with the water basins, only in my case it was a 24-pack of Charmin and I was having to steer the cart with only one hand because I had the 12-pack of Bounty and 6 bottles of Purell under the other arm. I checked out (writing a check for a very painful amount, I might add), tipped the bagger, drove home, and began unloading. Kendrie walks in the kitchen, takes one look at the two dozen bags of nutritious food, and her only comment is “Did you remember the Doritos?” I said yes, and her next comment was “I’m hungry and want a grilled cheese.” So I explained, calmly, that first I had to unload the groceries and put them away …. maybe if she wanted to help, the quicker I got it done the quicker I could make her a sandwich. Well, *that* fell on deaf ears, and I continued unpacking by myself. Every few minutes she would holler from the living room, “Are you cooking my grilled cheese yet???” and I would grit my teeth and unload another grocery bag. Finally, finally, I was done and I cooked her not one, but TWO grilled cheese sandwiches like she wanted.

I asked her, “Do you want them cut into squares or triangles?” and she said “Squares”. In between trying to find something for Brayden and Kellen to eat, because "I hadn't bought anything good" and feeding the dog, I had a momentary lapse of memory and cut the sandwiches into (gasp!) triangles. Kendrie took one look and said, “I asked for SQUARES! These are TRIANGLES!” Very sarcastically, I said, “Well, I’m sorry … Lord knows they won’t taste the same. Here, let me throw these in the trash and make you a new sandwich in squares.” (Let me interject here that Brayden had already tasted the new yogurt I brought home and deemed it inedible and thrown it in the trash.) and Kendrie said, “Yes, please, I want squares. Throw these away.”

I mean, I understand they’re kids and don’t perhaps get the concept of money …. but I was so perturbed by her attitude that I just walked off, making all kinds of comments about how “No big deal that I just spent three hours looking up new recipes and shopping for food and putting away food and cooking food and you guys don’t like anything I bought so you think it’s ok to just throw it in the trash” (although I did refrain from mentioning the starving Cambodian children, though I was sorely tempted to throw that in my lecture.) Kendrie said, “Fine! I’m taking off all the bread!” (in an I’ll-show-you tone of voice) and I hollered back, “Well, next time let me know and I’ll melt you a bowl of cheese …. No sense wasting four perfectly good pieces of bread!” (For some reason, all of a sudden the waste thing was seriously bothering me!) and Kendrie said, “I’m not eating the cheese, either!” and I’m left wondering, if you’re not eating the cheese or the bread, what is left in a grilled-cheese sandwich???

So that was about the time I decided that I couldn’t blame the steroids (she hasn’t been on them for two weeks) and I had no excuse for the other two children … obviously, it’s bad parenting, right? What else can it be? But, what kind of person am I that I have raised children who are so incredibly ungrateful? I’m sure Dr. Phil would have a field day. How depressing.

Fast forward to our dinner at Chick-Fil-A the other night. Now, I realize it’s not fine dining, but we were meeting friends and there’s a play-land … so it’s an automatic success in my book. We were sitting at one table and our friends were catty-corner to us in a booth. In the booth to my immediate right was a dad with three kids. Not to sound rude, but none of those kids had seen the wet end of a bath in quite some time, or a Kleenex, just going on appearances. There was a little boy, about four years old, turned around in his seat looking at our friends. I glanced over at him and caught his eye, I gave a little smile …… and the kid flipped me off! Not a subtle motion either …. I’m talking, flipped me the full bird! What was even more surprising to me was his dad walked up just then, *had* to have seen the whole thing, but said nothing to him! I was dumbfounded. He started rounding up his kids, telling them it was time to leave, and they were completely ignoring him. So he started in with threats about throwing their kids’ meal toys in the trash … then threatened to throw their shoes in the trash …. then (my favorite) threatened to leave them at the restaurant if they didn’t put their shoes on RIGHT NOW. (ps. I hate parents who do this. Don’t make a threat you’re not willing to follow through with. It’s called BLUFFING and kids will beat you at it when you make stupid threats like leaving them at a restaurant, which everybody knows {including the kids} that you’re not going to do!)

And I suddenly realized …. I am not the worst parent on the planet! I might not be the best, and that guy probably isn’t the worst, either, but at least my kids don’t give middle-finger salutes to total strangers. Or if they did, you can bet your bottom dollar I’d do something about it! And the next day, when we got stuck in a parking lot next to a car whose owner had invested a little too much cash in the stereo system, which was spewing forth a clamor I can only imagine must pass as music on another planet, Brayden said, “It’s rude to play your music so loud when other people are nearby. That’s not being very thoughtful.” and I could almost hear the chiseling sound from my name being engraved on the Parent of the Year trophy! My child was talking about thoughtfulness!!!

So to all of us who face these types of parenting issues (Weekly? Daily? Hourly???) let us have faith that despite the extra challenge of kids on steroids, or kids who are nauseous or fatigued, or siblings who are sick of taking a back seat to the “sick one”, or kids who are just plain pushing their limit …. There will always be someone doing a worse job than you!!! Yippee!!! I don’t know about you, but that makes me feel a whole lot better about myself!

I was so thrilled with my new-found parenting confidence that I decided to put on a DVD and let the kids dance away part of the evening. It is part of my “Happy parents help make happy memories” philosophy. Ask me again in a few days after the kids are driving me crazy and I’ll most likely have a new philosophy … one that involves military school in a far-away land. But for tonight, I want to share a few pictures from our Freeze Dance frenzy in the living room.

FREEZE DANCING FROM AROUND THE WORLD:


Brayden and Kendrie, square dancing.




Kellen, air guitar. Or seizure, I'm not sure which.




The "pick me up and swing-me around the room" dance.




Yep, that Lord of the Riverdance guy ain't got NOTHING on me!!




Conga!




Hey, I said FREEZE!




Joy comes in many forms. So does a need for Ritalin.




Did somebody say Vogue?? Hello? Madonna?




Hey, it's not really a dance, but I can do the changing-knees movement .... just not very good.




Believe it or not, this is the kids doing the Worm.




I have no idea what this dance is, but she seemed to be doing it a lot tonight!

So ends our weekend. We started out sad because we had to miss our weekend at Family Camp, but ended on a high note. Hope you all had a great weekend as well!

Love, Kristie
******************************************************

KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:
A very brave boy on my mom's list-serve, whose cancer came back a little over a year ago, went through a bone-marrow transplant last year with his older brother as donor. I am very sad to find out that his cancer has come back again ... Please visit his site at Cam's Page to cheer him up as he starts his treatment protocol for the third time. Geez, Louise ... when is enough enough for this poor kid???

BEST PART ABOUT HAVING CANCER TODAY: Zofran. No need to elaborate.

Wednesday, April 13, 2005

Eighteen Months Into This Thing ....

I’ll admit, I haven’t updated the site in a week because quite frankly, I don’t have much to report. I have NOTHING to report on the medical front, which is a good thing. Kendrie keeps rolling along with her at-home chemo, no problems there. I’m hesitant to report that the Singulaire seems to be helping her cough because as sure as I do I’ll jinx it, and then she’ll be up all night, hacking up a lung. Once the nurse mentioned “Exercise induced” it was indeed obvious to us that she coughs more when she is exerted --- and also in the middle of the night, usually in direct correlation with how little sleep Blaine and I are getting. If we’re well rested, she sleeps like a log. If it’s a night we're trying to catch up on our sleep, she’s coughing like a madman. Isn’t that always the way it works?

I’ve mentioned many times the wonderful list-serve I am on for parents of kids with leukemia (ALL-Kids) and how much support and encouragement I’ve gotten from these parents. We have new members join (sadly) on a pretty regular basis and we had another new member sign up tonight and send an introductory e-mail. I responded with a welcome, and typed in that “my daughter Kendrie was diagnosed ……” and I sat there and counted up the months … October to April ….and hey, wait, what’s the date today??? And it suddenly occurred to me that Kendrie’s diagnosis was exactly eighteen months ago TODAY. How funny is that? Well, obviously, not funny in the ha-ha way, like when you see those people on AFV whose pants fall down while they’re dancing at a wedding, but funny to me that only six months ago, when she hit her one-year anniversary, I was so uptight about it I practically had a nervous breakdown in the parking lot at my hairdressers shop. Today’s 18-month anniversary date would have gone by completely unnoticed if not for that e-mail. I guess that’s a good thing, right? We’re so comfortable in our normal lives that I sort of forgot all about it. Or, well, the part of my brain that isn't obsessed with it, forgot about it.

Anyway, I thought I would share with you a few photos of Kendrie and her “boyfriend” Nicholas. They are neighbors, classmates, buddies, and (unbeknownst to Nicholas) betrothed, at least if Kendrie has her way. She even asked me the other day if she wanted to marry Nicholas, did that mean she would have to be a girl? So maybe there’s hope yet that I’ll get her in a dress someday! Kendrie is aware that we will probably be leaving Georgia sometime next summer (2006) and she has already asked Nicholas’s mom if they can move with us. She hugs him way too much and is thrilled to be on the same t-ball team as him (Nicholas’s mom and I successfully negotiated {ie, begged} that they be placed on the same team!)


Kendrie and Nicholas at school, working on a project together. Hasn't she realized that it's never a good idea to get involved with a co-worker???



Kendrie has long been obsessed with playing t-ball. Now that she's on the same team as Nick-Nick (her pet nickname for him) there is truly nothing on earth that could make her happier. More t-ball details to follow.




From the looks of things here, Nicholas is re-thinking his decision to spend the afternoon at our house for a playdate. She totally adores him! It's a good thing it's so young and innocent, otherwise Blaine would be cleaning his guns already. :)

Otherwise, not much is going on here. We did have to cancel our plans this weekend to attend Family Camp, which was sad but necessary. Blaine is just too gimpy to manage walking all over the campgrounds, from the cabins to the mess hall to the lake to the various activity locations, etc. The kids were disappointed, but to be honest, I think Blaine and I were more disappointed than they were! What does that say about our social lives???

I hope you all have a nice weekend. While I certainly don’t wish any drama or natural disasters upon our household, I hope something happens soon, so I have something to tell all of you in the next journal update! Otherwise I’ll be forced to report on the new brakes we had to buy for the van, or the upcoming PTO elections, or something equally as mundane. Let’s see, winning the lottery would make for a nice journal entry! (Of course, that would entail actually *playing* the lottery, which we don’t do …. So I’ll have to think of something else.)

Take care,
Kristie
**********************************************************
KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY:
Same bad thing that happens every week -- having to take those twenty bazillion pills before bedtime. Nasty!

BEST THING ABOUT HAVING CANCER TODAY: Well, the fact that I am eighteen months into my treatment means that there are only eight more months to go --- then I am done, baby, DONE!

Wednesday, April 06, 2005

Um, the residual side effects from steroids last HOW long???

252 Days to Go




How much do you love that new picture of Kendrie in the strawberry field on the top of this site?? Well, maybe the better question would be “how much do *I* love that picture?” and the answer would be “Pretty darn much”! Her Pre-K class took a field trip to a local pick-your-own field on Tuesday and we had such a nice time …. The weather was perfect, the kids were agreeable, and I even got Kendrie to laugh for this picture (I won’t mention the dozen or so others I deleted before taking this one.) But isn’t this one great?!



Anyway, she had a good time and was quite motivated to fill up her clamshell to share with the rest of the family at dinner that night. I was so carried away by the happiness and spirit of the moment that I even promised we could dip the strawberries in chocolate and have them for dessert.



In a small way, it made up for the day before, when I had to cancel our plans to go to a nature park for a picnic. My goal was to make the last day of Spring Break (Monday) a fun one for the kids, but they woke up in incredibly foul moods --- grumpy to the point of abuse, so I nixed those plans before 8am, explaining to them that I don’t take kids that act **that** ugly out to do fun things. Then I had the rest of the morning to watch them sulk. Except for Kendrie, who started complaining that she didn’t feel very good. I thought she was just tired, but around lunchtime she threw up twice and then laid down for a nap. I chalked it up to the chemo from the night before and secretly congratulated myself for keeping them home. So needless to say, having a nice day with her on Tuesday helped make up for the lousy day we had on Monday.

WELL! Fast forward to Tuesday night around 5:15pm. I was putting the finishing touches on dinner (Who am I kidding? My scrapbooking friend Renee felt sorry for us and brought us a meal, so all I had to do was set the table! Thanks, Renee!) when Kellen asked if he could have some strawberries with dinner. I said sure, and Kendrie reminded me, in no uncertain terms and VERY LOUDLY, that I had said we would dip them in chocolate for dessert. When I replied that it would be ok if we had them both ways, she informed me that SHE picked them, they were HERS, and SHE was the BOSS of the berries! My head began to pound a little.

We sat down to dinner, Kendrie still pouting because Kellen had the nerve to eat a few of HER berries, and I realized that my head was seriously starting to hurt. By the time the meal was half-over, not fifteen minutes later, it was a full-blown migraine, complete with nausea and hot and cold flashes and other bodily functions that don’t need mentioning here. I croaked at Blaine, “I’m sorry that you’re on morphine and basically crippled but I need to you clean up after dinner so I can go lay down” and stumbled into the bedroom. So I’m laying in bed, alternating between sweating to death and freezing, thinking to myself that under no circumstances can I throw up or my head will literally explode …… when I hear Kendrie screaming, “BUT MOM SAID WE COULD MAKE CHOCOLATE FOR THE BERRIES!!!

Oh Dear God, somebody just melt some chocolate chips for the girl!

Apparently Blaine told her no, that it would have to wait until I got up, and she was crying because she knows that she is cut off from all food about half an hour after dinner and she’s going to run out of time, and she’s running into the bedroom, jumping on the bed (my head, Dear Lord, my head!) howling that her Daddy doesn’t know how to melt the chocolate. She’d been off the steroids for 48 hours, but it was one of the biggest tantrums yet. (And really, can you blame her? If someone promised me chocolate-covered strawberries and didn’t deliver, I’d probably do the same thing!)

So in the meantime I’m curled up in the fetal position, wondering what the heck has happened to me. I haven’t had a migraine in years, and I’ve never had one come on that fast, and I’ve never had one located directly behind my left eye. Was it allergies? I mean, I don’t *have* allergies, but everyone is talking about how bad the pollen is. Was this the same thing Kendrie had the day before?? Poor thing, no wonder she felt terrible. Was it the last vestiges of the measly cold I had? Was it a tainted bag of beef jerky? Then suddenly it hit me as clear as a bell. I mean, it’s obvious, given everything our family has gone through -----------

I have a brain tumor. Who the hell is going to hold this family together now?

And as I lay there, feeling sorry for myself because I’m obviously dying, all I can hear is Kendrie screaming about the chocolate for the berries. Blaine comes in to check on me and I whisper to him that there is some chocolate almond bark in the cabinet and if he’ll just melt it in the microwave for a minute the kids can dip the berries themselves. We do it a lot in the summer (I like them as much as the kids do!) and it really won’t be much work for him. So he’s grumbling, and limping out of the room (poor guy, like he needed THIS extra chore tonight?) and I hear him go in the kitchen, get the strawberries ready, take out the almond bark, melt it in the microwave, put plastic wrap on the table, Kellen and Brayden are hollering “Woohoo! Chocolate covered strawberries!” and the next thing I hear is Kendrie screaming, “Well I don’t even want any! I’ll make Mom buy me more berries tomorrow and I’ll make them all by myself and for now I want SPAGHETTIOS!!!

I’m not sure what happened after that, but I distinctly remember Kendrie coming in to my room, bringing me a wet rag and the thermometer, and kissing me on the forehead, which was pretty much the sweetest thing she could have done. If it hadn’t made me nauseous to move I would have rolled over and kissed her back. She wound up falling to sleep on Blaine’s side of the bed and spent a good portion of the night there, until she got tired of having to share my pillow and gave up and went to her own bed.

So this morning when the alarm went off I cautiously opened one eye, sort of testing the waters to see how I felt. And when I got up, and realized my head no longer hurt and my stomach was no longer pushing the eject button on its contents ….. well, you know that scene from The Sound of Music where Julie Andrews is spinning around on top of the mountain, with her arms out wide, sunshine on her face, singing, “The hills are alive … with the sound of music” ? That’s pretty much how I felt today.

And I’ve decided it’s probably not a brain tumor.

AND! Kendrie extracted a promise from me to buy more strawberries, and more chocolate, for tomorrow. I was so happy to be alive I agreed.

Thanks for checking in,
Kristie

PS. I want to share with you guys a really good picture I got of Kellen the other day. I know, I know, this caringbridge site is turning into my own personal photo and music forum --- but how cute are my kids?!?!?!



******************************************************

KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:
Today was a good day. My mom was in a good mood and had lots of energy, probably from sleeping eleven hours straight last night. She was even willing to drive back home this morning to get me my Power Rangers watch that I forgot to wear to school. See? A good day!

BEST PART ABOUT HAVING CANCER TODAY: Well, duh, the part about wearing my Power Ranger watch to school! And did you know that I am a champion strawberry picker???

Sunday, April 03, 2005

Steroid-Baby is Back!

(PS. This journal entry is a hodge-podge of nothingness)

255 Days to Go!

First of all, let me thank all of you for taking the time to check on Molly and her family as they struggle through this incredibly painful week. As if things weren't difficult enough for them, in addition to the funeral, Molly has been having uncontrollable nosebleeds and is actually in-patient right now for transfusions. So I would like to encourage you to please, bookmark Molly’s page (Caringbridge no longer allows us to put up permanent links to recommend sites) and visit again. Her mom, Donna, has posted both on the site, and to our ALL-Kids list, how very much the notes of support and encouragement have helped them all. Thank you for doing that.

As for us, I think things in the Escoe-household are settling back down to normal. Not sure if that’s good or bad, but normal irregardless! Blaine flew home from Seattle on Tuesday and I need to give a huge public THANK YOU to our friends Erin and Joe; Joe flew up to Seattle to be with Blaine his last two days there, helping him to his follow-up appointment at the hospital and helping him navigate the airport and flight home. We had anticipated Blaine being able to do those things by himself and hadn’t made any sort of arrangements for help …. Blaine said afterwards there was no way he could have gotten through the airport alone, so I really hope Joe and Erin know how sincere our appreciation is.

Mom and the kids and I spent Tuesday morning at the clinic for Kendrie’s monthly chemo appointment. It was a “quick” appt, just vincristine through her port, count check and exam. Yet again, Kendrie has an ANC higher than the desired window of 1000-2000. Being the overachiever that she is, she checked in at 3440. I am confident that at her next appt she will be bumped up to a higher dosage of at-home chemo (because it appears 125 percent isn’t enough for my chemo-burning child!) Our nurse-practitioner was also concerned about her cough, which Kendrie has had for three months, and a little bit of wheezing she heard in the lungs. We all suspect it is nothing more than allergies, but the term “exercise-induced asthma” was tossed around as well (since when does doing the hula in front of the TV with a t-shirt wrapped around your waist constitute exercise???) So, we’re adding Singulaire to her nighttime meds, in addition to the Claritin she has been taking. Add to that the 6MP, Methotrexate, and steroids she is on this week, and that means on Tuesday night she had to take 12 pills before bed. Gag.

After the clinic appointment, we spent a few hours at the zoo, then went to the airport to pick up Blaine. The kids were so excited to see him and were standing in the passenger pick-up area, holding up their poster-board “Welcome Home!” signs and asking “Is it him? Is it him?” every time the handicapped elevator opened up. Naturally, their plane entered through a different terminal and Joe came up behind us to tell us that Blaine was already waiting for us in baggage. Poster-board disappointment aside, it was a great homecoming and nice to have him back with us, peg-leg and all.

** I have to tell you that in the course of typing this journal update I have gotten up to check on my kids three times because I could hear one of them crying, yet when I went in their rooms, total silence. What on earth? I swear I could hear crying. It wasn’t until the 4th time I realized the noise was coming from outside and went out to find cats (doing who knows what) under my window --- no wonder I am a dog person. **

So, mom stayed with us this week until Friday which was a huge help. Blaine had doctors appointments on Thursday and Friday morning and since the kids were on Spring Break, she was able to keep them home with her. Her flight back home to OKC was on Day 3 of Kendrie’s 5-day steroid pulse, so she missed out on some of the best (worst?) behavior, which usually takes place near the end. She’ll never believe me now when I try to blame any of Kendrie’s behavior on steroids … although mom *was* still here the night Kendrie had a tantrum at dinner because the angel-hair pasta I used for spaghetti didn’t taste like “regular noodles”. And yes, in case you were wondering, it was served with Ragu. :)

Mom missed, however, the crying jags, the whining jags, the pouting jags, the argumentative jags, and everything in between. Like today, when she went out to play in sweat pants and (what else?) hiking boots. She came in because it was “too hot” and wanted to change, but didn’t want to take off the hiking boots. When I told her the pants wouldn’t come off over the boots, she started rolling around on the floor, flailing about and crying that if she took time to take off the boots, she would miss all the playtime with her friends outside. I refrained from pointing out that the rolling around on the floor was actually what was keeping her from playtime. Great self-control I have, don’t you think?

Mom also missed this month’s obsession with cheese slices and extreme displays of inability to share toys. She didn’t get away with as much this month, though, I don’t think, because to be honest, I have a smidgen of a head cold and just don’t feel like putting up with it. I have to admit that I feel somewhat betrayed that my barrier of Purell was somehow penetrated by a single, solitary germ. I use that stuff regularly; faithfully; obsessively. How on earth did I still catch a cold? Oh well, at least it’s a mild, “just a few Kleenex and a Sudafed and I should be fine” kind of cold as opposed to a “in bed for a week, miserable and hating life” kind of cold.

Mom also missed the lasting impression her gift of Home Alone 3 has made on my kids, evidenced by the extremely elaborate “Burglar Booby Trap” Kellen and Kendrie made last night under the window in their bedroom, utilizing (in some manner I’m still not exactly quite sure would work) string, toy cars, a wooden sword, a flashlight, a book, a suction-cup dart gun, and Shrek slippers. Deep down, I was a little worried that if one of them had a nightmare and I went rushing in the room in the middle of the night, I might wind up slipping on the book, getting bonked in the head with the flashlight and landing flat on the floor with slippers on my feet! Which, I think, was sort of their plan for any would-be home invaders.

Tomorrow is the last day of Spring Break for Brayden, Kellen and Kendrie and as long as the weather continues to be nice, we’re going to a nature preserve to look at animals and have a picnic lunch. We will ALL attend Blaine’s doctor’s appointment with him beforehand, and I’m not sure who will be happier when Blaine’s leg is healed enough for him to drive himself; me or him. Or the doctor, who’ll have to put up with all three kids tomorrow as well.

Along those lines, the harvest site (leg) is definitely more painful than the transfer site (head) for Blaine, but I’m so very happy to report that so far, so good. It appears the surgery was a complete success. Blaine is able to eat more and more solid food each day (can you believe he lost ten pounds during the surgery? I gained ten, and he lost it!) and he continues to improve in speech each day as well. The only bad thing is since he can’t quite close his mouth all the way, he snores like a maniac and I have spent more than one night this past week on the sofa in the living room. Someone unfamiliar with our plight would think we were on our way to Divorce Court. Thanks to all of you for your support and prayers during his surgery and his recuperation.

I’m putting the song “Crazy” back up on the site; it’s how Kendrie acts on steroids and it’s how she makes me feel during that week each month. Thank goodness today was the last day!

Thanks for checking in,

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

WORST THING ABOUT HAVING CANCER TODAY:
Well, my neighbor friend and classmate Brittney came over to play and I know that when I am the host I am supposed to share my toys but she took Kellen’s toy gun and I just had to put my foot down! Things got pretty ugly, let me tell you.

BEST PART ABOUT HAVING CANCER TODAY: That today was my last dose of steroids this month (Mom made me type that).