Around the world in 80 days
Hey, if someone was able to fly a hot-air balloon around the world for 80 days, enduring wind changes, cold temperatures, dodging high wires and small planes, and avoiding territorial high-altitude birds, surely we can plug along for 80 more days of chemotherapy treatment, right?
This update will be brief. Now, when you are finished sobbing into your Starbucks napkins (oh, wait, those were tears of joy???) I’ll explain: In an effort to cut gasoline costs, the governor of Georgia made the request that all public schools be closed on Monday and Tuesday of this week. Something to do with the gas expense of filling up the buses for transportation, yadda yadda. What this means -- basically -- to us stay-at-home moms, is two sudden, unplanned, never-ending days of bored children and waaaaayyyy too many hours stretching out before us. Sure, in the summer, you’re prepared. You’ve got a plan; a strategy. But two days, in late September, no warning, mid-week, just *launched* at me like that?? What’s that about?? I mean, do these people expect me to ENTERTAIN these kids for two days???
So, anyway, my point is that after having my 39th birthday earlier this month, I suddenly am unable to stay awake past 9pm at night. And now that my free time during the day, while my children are USUALLY in school, has been depleted-- you, the faithful Caringbridge readers, are stuck with a two-paragraph update this week. Well, three or four now, now that I’ve been rambling and complaining like I have.
Thanks so much to everyone who took part in the Chili’s Live A Little, Give A Little campaign. Kendrie enjoyed the peppers that were made for her, and we had a great time at dinner last night at our local Chili’s. We got to sit near Jay, from Macon, who is an actual patient at St. Judes and brought quite a crowd out to support the fundraiser. (Cindy, somebody at your table left a Matchbox car on the floor and the hostess took it!)
We got to share our dinner with our friends Renee’ and Keith and their boys Kody and Ryan (the ones whose hunting clothes Kendrie tries to steal every time we go to their house) and also with our Caringbridge friend Haley and her family. Haley lives in Tennessee, but is treated at Egleston while awaiting her liver transplant. Either way you slice it, she and her parents Cheryl and Bruce drove a long way for dinner! We really enjoyed spending time with you, though, and are grateful you made the drive.
Thanks also to Mercer student Holly who came over and introduced herself to us at the restaurant (Amanda, you should have come over! We would have loved to meet you, too!) Holly, you might not have realized it, but I was about five seconds away from snatching my kids bald-headed due to their obnoxious behavior. Your perfectly timed arrival prevented what would most likely have been an ugly scene --- thanks for your introduction, and your wonderful timing!! If anyone hears how much Chili’s wound up donating to St. Judes, I would love to know.
“Snatch you bald-headed” ….. that was a threat my mom issued to my sister and me while growing up on more occasions than I can count. In light of the duck fuzz, maybe it’s not appropriate for me to say to my children, but it’s one of my favorite phrases and I just can’t help myself.
Ooops. See? Now you’ve got six paragraphs. What with the extra rambling and all.
My kids are going back to school tomorrow. I don’t care if the whole state is out of gas and I have to strap all three of them to my back and carry them myself. I'll balance them on my head like those Ugandan women carry pots of water. I can almost hear the silence now ……. (blissful sigh)
Take care,
Kristie
***********************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: OK, what is UP with this rash all over my body? It’s mainly my face, neck and shoulders. Mom keeps mumbling something about a methotrexate rash, but I have no idea what that means. She keeps lubing me up with some greasy lotion that makes me shinier than Donatella Versace and it’s still itching anyway! Aaaggghhhh!
BEST PART ABOUT HAVING CANCER TODAY: I am still basking in the glow of Mr. Bruce and Mrs. Cheryl telling my mom last night how cute I am. Of course, they haven’t seen me today, fighting and arguing and wrestling with Brayden and Kellen ….. somebody please tell me I can go back to school tomorrow! I know Mommy will be sad, sad, sad, and missing us all day, but it’s really what I want to do, no matter how difficult it is for her.
Tuesday, September 27, 2005
Wednesday, September 21, 2005
SPEEDING TOWARDS THE END (or trying to speed, anyway)
86 Days to Go
Actually, I don’t feel very speedy. I don't feel speedy at all. Like when you have a really fantastic, wonderful, much-anticipated goal in sight … high school graduation, wedding, season premiere of Survivor …. and time seems to slow down, the closer you get. Does that happen to anyone else? It sounds a little selfish (OK, a LOT selfish) for me to talk about how weary I am of this cancer gig, when Kendrie is the one doing all the work. But now that we’ve got our sights set and an end seems firmly in place (Have I mentioned to you that there are only 86 days to go?!?) it seems to be taking longer to get there.
Thank goodness for the wonderful social support organizations we have met along the way that have helped smooth (and in some cases, speed up) the process with their encouragement and behind-the-scenes hard work. Some of the biggest for us have been Camp Sunshine, The Lighthouse Family Retreat, CURE, and SuperSibs! I hope everyone knows that I would trade every family camp weekend, every beach retreat, every Quiet Heroes luncheon, every picnic and party and care package and meeting and get-together in a heartbeat. It goes back to the “We’re so lucky Kendrie got cancer!” attitude that I worry a little it must sound like I’m saying. If ever there were a case for a big resounding NOT! … this would be it. But once again, I am thankful for the friends we’ve made along the way and the people who have made it their life’s work to provide support and encouragement to families struggling with pediatric cancer. (Hey, I could describe a few of you Caringbridge junkies the same way!)
Saturday, we got to take part in the first-ever Camp Sunshine Middle Georgia Family Fun Day. Camp Sunshine was kind enough to start up a monthly Middle Georgia Family Support Group Meeting almost a year ago, since most of us live too far away to take advantage of their Atlanta-area activities, where they are based. And this afternoon spent at a local “amusement” center was a fun way for more of the middle Georgia families to get acquainted. It was something like 184 degrees outside (only a slight exaggeration) and by the end of the afternoon, Kendrie (aka “Finishing up her Steroids-girl”) was pooped. But we had a wonderful time and I thought I would share some of the pictures with you.
In the meantime, we can look forward to a few other upcoming activities, like Family Camp Weekend and our (once-hurricane-postponed-pray-it-doesn’t-get-canceled-again) Lighthouse beach retreat. We’ll plug along, putting one foot in front of the other, and focus on the finish line. It’ll get here eventually, even if it feels like we’re speeding through molasses to reach the end, right?
Kendrie, hanging out "in the pit" (This was before she actually worked up the courage to get in one of the go-carts by herself ..... coward, but cute!)
While Dad's 2-seater go-cart was much faster, Kendrie decided she liked hers better. Her comment for Blaine was, "Why is this road so bumply?" Obviously, not the smoothest ride on the road.
Ahhhh, the first-ever taste of being airborne. It's fun, but a lot of work to get bouncing that high.
Kendrie, bless her heart, just didn't have the poundage behind the jump. She never got more than a foot off the trampoline, but she loved every second of it.
If there is a rock climb within a hundred miles, this boy will find it, and conquer it. OK, maybe "conquer" is too strong a word ... but at least give it a good go.
What a perfect way to end up the day .... shooting at your brother from the Bumper Blaster Boats, and trying to avoid his shots in return. At this point, I was dripping with sweat and seriously considered commandeering a Blaster Boat myself and "accidentally" falling in the water. But I thought I might look silly -- a lone adult amidst a group of 7 and 8 yr olds, all of us aiming to steer ourselves under the waterfull on purpose, just to cool off. So instead, I contented myself with sitting on a park bench in the shade, fanning my face with a sheet of paper, like an old lady, and taking the following picture of a very tired Kendrie:
One last thing before I go --- if you haven't heard, Chili's is sponsoring a "Live a Little, Give a Little" campaign on Sept 26th, and will donate 100 percent of their profits (minimum of $100,000) to St. Jude's Children's Research Hospital. You can also go to their web site Chili's Create A Pepper and create an online "Pepper" in someone's honor and make a donation, if you'd like. Please find a Chili's near you and make sure you eat there on Sept 26th -- what a wonderful event! If any of you are reading in the "Middle Georgia" area, we will be having dinner at the Chili's in Macon (Tom Hill Sr. Blvd, I think is the name of the street?) and we'd love to have you join us -- just e-mail me!
Thanks for checking in,
your non-speedy friend,
Kristie
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Well, I have no idea. My mom is an insomniac and is writing this update in the middle of the night .... obviously, nothing too traumatic has happened YET!
BEST PART ABOUT HAVING CANCER TODAY: Still sleeping ...zzzzzzzzz, zzzzzzzzzzz, zzzzzzzzzzz.
Actually, I don’t feel very speedy. I don't feel speedy at all. Like when you have a really fantastic, wonderful, much-anticipated goal in sight … high school graduation, wedding, season premiere of Survivor …. and time seems to slow down, the closer you get. Does that happen to anyone else? It sounds a little selfish (OK, a LOT selfish) for me to talk about how weary I am of this cancer gig, when Kendrie is the one doing all the work. But now that we’ve got our sights set and an end seems firmly in place (Have I mentioned to you that there are only 86 days to go?!?) it seems to be taking longer to get there.
Thank goodness for the wonderful social support organizations we have met along the way that have helped smooth (and in some cases, speed up) the process with their encouragement and behind-the-scenes hard work. Some of the biggest for us have been Camp Sunshine, The Lighthouse Family Retreat, CURE, and SuperSibs! I hope everyone knows that I would trade every family camp weekend, every beach retreat, every Quiet Heroes luncheon, every picnic and party and care package and meeting and get-together in a heartbeat. It goes back to the “We’re so lucky Kendrie got cancer!” attitude that I worry a little it must sound like I’m saying. If ever there were a case for a big resounding NOT! … this would be it. But once again, I am thankful for the friends we’ve made along the way and the people who have made it their life’s work to provide support and encouragement to families struggling with pediatric cancer. (Hey, I could describe a few of you Caringbridge junkies the same way!)
Saturday, we got to take part in the first-ever Camp Sunshine Middle Georgia Family Fun Day. Camp Sunshine was kind enough to start up a monthly Middle Georgia Family Support Group Meeting almost a year ago, since most of us live too far away to take advantage of their Atlanta-area activities, where they are based. And this afternoon spent at a local “amusement” center was a fun way for more of the middle Georgia families to get acquainted. It was something like 184 degrees outside (only a slight exaggeration) and by the end of the afternoon, Kendrie (aka “Finishing up her Steroids-girl”) was pooped. But we had a wonderful time and I thought I would share some of the pictures with you.
In the meantime, we can look forward to a few other upcoming activities, like Family Camp Weekend and our (once-hurricane-postponed-pray-it-doesn’t-get-canceled-again) Lighthouse beach retreat. We’ll plug along, putting one foot in front of the other, and focus on the finish line. It’ll get here eventually, even if it feels like we’re speeding through molasses to reach the end, right?
Kendrie, hanging out "in the pit" (This was before she actually worked up the courage to get in one of the go-carts by herself ..... coward, but cute!)
While Dad's 2-seater go-cart was much faster, Kendrie decided she liked hers better. Her comment for Blaine was, "Why is this road so bumply?" Obviously, not the smoothest ride on the road.
Ahhhh, the first-ever taste of being airborne. It's fun, but a lot of work to get bouncing that high.
Kendrie, bless her heart, just didn't have the poundage behind the jump. She never got more than a foot off the trampoline, but she loved every second of it.
If there is a rock climb within a hundred miles, this boy will find it, and conquer it. OK, maybe "conquer" is too strong a word ... but at least give it a good go.
What a perfect way to end up the day .... shooting at your brother from the Bumper Blaster Boats, and trying to avoid his shots in return. At this point, I was dripping with sweat and seriously considered commandeering a Blaster Boat myself and "accidentally" falling in the water. But I thought I might look silly -- a lone adult amidst a group of 7 and 8 yr olds, all of us aiming to steer ourselves under the waterfull on purpose, just to cool off. So instead, I contented myself with sitting on a park bench in the shade, fanning my face with a sheet of paper, like an old lady, and taking the following picture of a very tired Kendrie:
One last thing before I go --- if you haven't heard, Chili's is sponsoring a "Live a Little, Give a Little" campaign on Sept 26th, and will donate 100 percent of their profits (minimum of $100,000) to St. Jude's Children's Research Hospital. You can also go to their web site Chili's Create A Pepper and create an online "Pepper" in someone's honor and make a donation, if you'd like. Please find a Chili's near you and make sure you eat there on Sept 26th -- what a wonderful event! If any of you are reading in the "Middle Georgia" area, we will be having dinner at the Chili's in Macon (Tom Hill Sr. Blvd, I think is the name of the street?) and we'd love to have you join us -- just e-mail me!
Thanks for checking in,
your non-speedy friend,
Kristie
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Well, I have no idea. My mom is an insomniac and is writing this update in the middle of the night .... obviously, nothing too traumatic has happened YET!
BEST PART ABOUT HAVING CANCER TODAY: Still sleeping ...zzzzzzzzz, zzzzzzzzzzz, zzzzzzzzzzz.
Friday, September 16, 2005
RANDOM INFORMATION ABOUT OUR COUNTRY GIRL
91 Days to Go! Woo-hoo, double digits!!
Ten-yr olds are weird. I can say that with the smugness of someone whose oldest child is only eight, therefore I have two years to go before someone can accuse *my* ten year old of being weird, although I’m sure that day will come. But for now, I am positive that all other people's ten-year olds are weird. How do I know this? I am speaking with the authority of someone who has spent fifteen hours this week “proctoring” the ITBS testing in a 5th grade class in my children’s elementary school.
Now, I have to say, that even though I am *only* a stay-at-home mom, and not exactly out finding the cure for cancer (wouldn’t that be nice?) or saving baby whales or the rain forest or feeding orphan tree monkeys or anything like that, I DO have a life, and fifteen hours cut quite a bit of chunk out of it this week. Which is basically my cheesy way of saying, “Sorry it’s taken me an entire week to update this site.” Thanks for checking in on us despite my lack of an update.
Now, back to the weird ten-year olds. Here is a partial list of their weirdness, compiled by me, during my proctor duties:
They dress weird. They either spend way too much, or way too little, time on their hair in the morning. They bring bottled water to school with screw-top lids and spend ten minutes puncturing little holes in the top of the lid, so they can dribble the water into their mouths. It would be much quicker to just unscrew the lid, but they don’t see that. They think it is funny to place a snack-sized bag of potatoe chips on the ground and stomp on it to make a loud noise, but rendering the actual snack into dust. They are extremely uncoordinated, as evidenced by the eight million pencils, books, and test sheets that fell or rolled off their desks this week. One girl came to school with a price tag hanging out of her skirt (Although I shouldn't poke fun because that has happened to me as well.) Many of them refuse to blow their nose and prefer sniffling and snorting their way through life. THIS, especially, is not entertaining to me.
The role of a proctor is excruciatingly boring. I would have driven spikes into my own brain but couldn't summon up the enthusiasm. Besides trying to surreptitiously pass Kleenex to a few of them, I spent all week praying to the Heavens that someone’s pencil lead would break so I would have something to do. What does that say about my life, when sharpening a pencil has become a high point in my daily routine? In an attempt, however, to not convey my extreme and total boredom to the class, and also to prove myself in my quest for “Cool Mom” status (you all know what I’m talking about, don’t you?) I had the following conversation with one of the students the first day, while I was collecting their library books off their desks:
Me: “Oh, Harry Potter, I love this series”
Boy: grunting noise.
Me, still trying to be cool and hip: “Have you read them all?”
Boy: “uh-huh”
Me. Still undaunted: “Did you know the new movie is coming out at Thanksgiving?”
Boy: “uh, huh”
Me, floundering a bit: “I’m very excited to see it, are you?”
Boy: grunting noise again.
Me, still trying: “I’ve seen all the movies so far, have you?”
Boy: “uh-huh”
Me, accepting defeat: “OK, good luck on your test”
Then, I walked away, but not before I caught, out of the corner of my eye, the look he exchanged with the girl sitting next to him. NOT, as I would have hoped, the “Wow, I wish my mom was cool enough to like Harry Potter” but rather, the “Oh, my, GOD, some grown-ups are so pathetic!” look. As I skulked away, I wondered if I could break his pencil lead without him noticing.
This morning, I took doughnuts to celebrate the last day of testing. If I can’t impress the class with my Harry Potter prowess, then I’m not above blatant bribery in an attempt to try once more for the elusive “Cool Mom” status. And I had the following conversation with another student:
Boy: “Hey, did you bring those doughnuts for our class?”
Me (feeling quite proud of myself): “Why yes, I did”
Boy: “Dibs on chocolate!”
Me: “Well, actually, I brought all glazed”
Boy: “You men there’s no chocolate?”
Me: “No, I thought it would be easier if they were all the same:
Boy: “No sprinkles?”
Me (wondering why I am explaining myself to a ten-year old): “No, all the same”
Boy: “No crème filled?”
Me: “I thought it would be easier this way”
Boy: “No raspberry glazed? No bear claws? No munchkins?”
Me: “No, you ungrateful little shit, I brought GLAZED! I spent fifteen dollars buying three dozen GLAZED donuts and if you don’t like it then I will take them and I will eat every single one and NONE OF YOU WILL GET ANY!!!!!!!!!”
No, wait, that was only the thought that went through my head; I didn’t really say it.
So anyway, that’s how my week went. And I can only imagine that you're wondering what on earth possessed me to share it with all of you. Hmmmm. No idea, really. So, since I can’t come and regale you with tales of my Mom-Coolness, I’ll regale you instead with photos of Kendrie’s birthday party. Never mind that her birthday was two weeks ago, and by the time I get the update posted she will be eligible for social security …..
Much to her dismay, we did NOT have a Spiderman party …. which everyone knows is the dream of every 6-year old girl on the planet. Instead, I had the audacity to plan a pony-party, with moonwalk, hayride, horses, and a horse-cake. (Sigh--- I’m obviously not getting any cool points with my own kids, either.) Despite her initial hesitation that this would be the most boring party EVER, everyone seemed to have a good time. Naturally, I thought I would share some of the photos with you. (I pay for unlimited photo storage and transfer with Geocities, but seem to have a problem getting little red x’s instead of photos whenever I put several pictures up in one journal entry. So if you see any little red x’s, curse the forces that be at Yahoo, and come back later and check again when the site has re-set itself.)
Brayden, the only one of the three, that would consider wearing boots to the horse party. But at least she *looks* cool, doesn't she?
I am the biggest hypocrit on the planet. This summer, during our Ohio visit, I threw a complete fit about how Kendrie is not allowed to go to any kind of petting zoo because they are nothing but germ filled cesspools, full of disease and illness .... but at her birthday party, I let a horse practically lick her hand off.
The highlight of the day, getting to share her special moment on the hayride with the ever-present Nicholas. PS. Notice she has not only a crossbite, but *also* an underbite? We have years of dental therapy ahead.
Horses, pony rides, a moonwalk, a hay ride ... and what is her favorite thing? The plank of wood hanging from a rope in the tree, otherwise known as a "swing".
A friend of mine made the special horse-cake... which was adorable, even though Brayden was disappointed to discover the entire horse's head was NOT actually filled with icing.
Kendrie and a few of her cronies, determined to make sure Spiderman still has his rightful place as action hero of the day.
Our family, posing for an image of happiness and togetherness. Shortly after this, Kendrie freaked because Brayden touched one of her gifts, and Kellen panicked because there was a fly in the van. And such ends a fabulous day!
And in other news -- cancer related, imagine that! -- Kendrie had her monthly chemo appointment on Monday of this week. The appointment wasn’t until 1pm anyway, and then she received another IVIG transfusion, which takes several hours…. we were hungry and stopped for dinner ... and wound up not getting home until 9:30 that evening. She was perky because she slept for two hours through the transfusion --- next time, I think I’ll take a nap at the same time!
Speaking of next time, despite the fact that her counts have remained strong on 100 percent of 6mp and 66 percent of methotrexate, I was given the option to continue the IVIG transfusions through the end of treatment in December. It was an odd feeling, to have the oncologist look at me and say, “We’ll totally leave the decision up to you” ….. I don’t know if I *want* that kind of power!
Considering “cold and flu” season is coming up, and the only downfall to the transfusion is the time it takes to administer, I opted to go ahead and have Kendrie continue receiving it. We’ve already driven 100 miles to the clinic, and have another 100 to go to get back home; might as well get the most bang for our buck while we’re there, right?
Making the appointment for next month was both complicated, and surreal. She is due for a spinal, so must be NPO (no food for six hours before hand) but also needs a block of three or four hours for the IVIG transfusion ….. We had to coordinate transfusion rooms, sedation/procedure rooms, etc., how long will she have to go without eating that day, etc. But what made it surreal to me is that this will be (God willing!) her last ever spinal tap!!! One final time of someone sticking a needle in her spine, sucking fluid out to look under a microscope and make sure it is still leukemia-free, and then injecting poison into the empty space left by the fluid to prevent leukemia cells from hiding out in the spinal fluid/ central nervous system area. Yahoo, only one more! Who knew I could get so wound up about such a barbaric procedure???
And, it’s obvious we are in the midst of a steroid week here. No hellacious attitude, or hellacious appetite, but she sure feels punky. Lots of whining, lots of tears. And that’s how it affects ME, think how Kendrie must feel. In fact, I just returned from picking her up at school for the second day this week. She comes home and sleeps all afternoon --- and this is the kid who never naps. So I know she feels pretty crappy. Funny, they lowered her chemo doses due to low counts, but steroids are one drug that apparently never gets reduced --- it will definitely be the drug I will miss the LEAST when we get off this crazy chemo train. And that's saying something, ha!
Lastly, car #400,000, where are you??? Whoever the 400,000th visitor to Kendrie’s Caringbridge site, you didn’t let us know in the guestbook! So, like horseshoes and hand grenades, “close” is going to have to count! So, the winner, at 399,996 is Sarina from Pennsylvania! Thanks, BIG thanks, to all of you for checking in on us so faithfully, and Sarina, we will be making a Caringbridge donation in your name…. thank you! And thank you to everyone for continuing to hold Clare and Jay in your thoughts, and for visiting their websites.
I hope you all have a great weekend!
Kristie
************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I am missing a perfectly good cooking activity and reading time today at school because I don’t feel good. It’s barely 2 in the afternoon and I’ve already put on my new Yu-Gi-Oh pajamas that I got for my birthday. Now, I like my creature comforts as much as the next girl, and those pj’s *are* pretty darn soft, but I do not like feeling so icky and laying down during the day!
BEST PART ABOUT HAVING CANCER TODAY: Only two doses of steroids left this month … that’s the best thing I can think of so far.
PS --- Please visit Julianna Banana's Journal Entry from 9/16/05 for a very touching tribute to a wonderful angel named Marcus. I consider myself a devoted JB cult-ee and never miss an entry --- but this one especially spoke to me.
Ten-yr olds are weird. I can say that with the smugness of someone whose oldest child is only eight, therefore I have two years to go before someone can accuse *my* ten year old of being weird, although I’m sure that day will come. But for now, I am positive that all other people's ten-year olds are weird. How do I know this? I am speaking with the authority of someone who has spent fifteen hours this week “proctoring” the ITBS testing in a 5th grade class in my children’s elementary school.
Now, I have to say, that even though I am *only* a stay-at-home mom, and not exactly out finding the cure for cancer (wouldn’t that be nice?) or saving baby whales or the rain forest or feeding orphan tree monkeys or anything like that, I DO have a life, and fifteen hours cut quite a bit of chunk out of it this week. Which is basically my cheesy way of saying, “Sorry it’s taken me an entire week to update this site.” Thanks for checking in on us despite my lack of an update.
Now, back to the weird ten-year olds. Here is a partial list of their weirdness, compiled by me, during my proctor duties:
They dress weird. They either spend way too much, or way too little, time on their hair in the morning. They bring bottled water to school with screw-top lids and spend ten minutes puncturing little holes in the top of the lid, so they can dribble the water into their mouths. It would be much quicker to just unscrew the lid, but they don’t see that. They think it is funny to place a snack-sized bag of potatoe chips on the ground and stomp on it to make a loud noise, but rendering the actual snack into dust. They are extremely uncoordinated, as evidenced by the eight million pencils, books, and test sheets that fell or rolled off their desks this week. One girl came to school with a price tag hanging out of her skirt (Although I shouldn't poke fun because that has happened to me as well.) Many of them refuse to blow their nose and prefer sniffling and snorting their way through life. THIS, especially, is not entertaining to me.
The role of a proctor is excruciatingly boring. I would have driven spikes into my own brain but couldn't summon up the enthusiasm. Besides trying to surreptitiously pass Kleenex to a few of them, I spent all week praying to the Heavens that someone’s pencil lead would break so I would have something to do. What does that say about my life, when sharpening a pencil has become a high point in my daily routine? In an attempt, however, to not convey my extreme and total boredom to the class, and also to prove myself in my quest for “Cool Mom” status (you all know what I’m talking about, don’t you?) I had the following conversation with one of the students the first day, while I was collecting their library books off their desks:
Me: “Oh, Harry Potter, I love this series”
Boy: grunting noise.
Me, still trying to be cool and hip: “Have you read them all?”
Boy: “uh-huh”
Me. Still undaunted: “Did you know the new movie is coming out at Thanksgiving?”
Boy: “uh, huh”
Me, floundering a bit: “I’m very excited to see it, are you?”
Boy: grunting noise again.
Me, still trying: “I’ve seen all the movies so far, have you?”
Boy: “uh-huh”
Me, accepting defeat: “OK, good luck on your test”
Then, I walked away, but not before I caught, out of the corner of my eye, the look he exchanged with the girl sitting next to him. NOT, as I would have hoped, the “Wow, I wish my mom was cool enough to like Harry Potter” but rather, the “Oh, my, GOD, some grown-ups are so pathetic!” look. As I skulked away, I wondered if I could break his pencil lead without him noticing.
This morning, I took doughnuts to celebrate the last day of testing. If I can’t impress the class with my Harry Potter prowess, then I’m not above blatant bribery in an attempt to try once more for the elusive “Cool Mom” status. And I had the following conversation with another student:
Boy: “Hey, did you bring those doughnuts for our class?”
Me (feeling quite proud of myself): “Why yes, I did”
Boy: “Dibs on chocolate!”
Me: “Well, actually, I brought all glazed”
Boy: “You men there’s no chocolate?”
Me: “No, I thought it would be easier if they were all the same:
Boy: “No sprinkles?”
Me (wondering why I am explaining myself to a ten-year old): “No, all the same”
Boy: “No crème filled?”
Me: “I thought it would be easier this way”
Boy: “No raspberry glazed? No bear claws? No munchkins?”
Me: “No, you ungrateful little shit, I brought GLAZED! I spent fifteen dollars buying three dozen GLAZED donuts and if you don’t like it then I will take them and I will eat every single one and NONE OF YOU WILL GET ANY!!!!!!!!!”
No, wait, that was only the thought that went through my head; I didn’t really say it.
So anyway, that’s how my week went. And I can only imagine that you're wondering what on earth possessed me to share it with all of you. Hmmmm. No idea, really. So, since I can’t come and regale you with tales of my Mom-Coolness, I’ll regale you instead with photos of Kendrie’s birthday party. Never mind that her birthday was two weeks ago, and by the time I get the update posted she will be eligible for social security …..
Much to her dismay, we did NOT have a Spiderman party …. which everyone knows is the dream of every 6-year old girl on the planet. Instead, I had the audacity to plan a pony-party, with moonwalk, hayride, horses, and a horse-cake. (Sigh--- I’m obviously not getting any cool points with my own kids, either.) Despite her initial hesitation that this would be the most boring party EVER, everyone seemed to have a good time. Naturally, I thought I would share some of the photos with you. (I pay for unlimited photo storage and transfer with Geocities, but seem to have a problem getting little red x’s instead of photos whenever I put several pictures up in one journal entry. So if you see any little red x’s, curse the forces that be at Yahoo, and come back later and check again when the site has re-set itself.)
Brayden, the only one of the three, that would consider wearing boots to the horse party. But at least she *looks* cool, doesn't she?
I am the biggest hypocrit on the planet. This summer, during our Ohio visit, I threw a complete fit about how Kendrie is not allowed to go to any kind of petting zoo because they are nothing but germ filled cesspools, full of disease and illness .... but at her birthday party, I let a horse practically lick her hand off.
The highlight of the day, getting to share her special moment on the hayride with the ever-present Nicholas. PS. Notice she has not only a crossbite, but *also* an underbite? We have years of dental therapy ahead.
Horses, pony rides, a moonwalk, a hay ride ... and what is her favorite thing? The plank of wood hanging from a rope in the tree, otherwise known as a "swing".
A friend of mine made the special horse-cake... which was adorable, even though Brayden was disappointed to discover the entire horse's head was NOT actually filled with icing.
Kendrie and a few of her cronies, determined to make sure Spiderman still has his rightful place as action hero of the day.
Our family, posing for an image of happiness and togetherness. Shortly after this, Kendrie freaked because Brayden touched one of her gifts, and Kellen panicked because there was a fly in the van. And such ends a fabulous day!
And in other news -- cancer related, imagine that! -- Kendrie had her monthly chemo appointment on Monday of this week. The appointment wasn’t until 1pm anyway, and then she received another IVIG transfusion, which takes several hours…. we were hungry and stopped for dinner ... and wound up not getting home until 9:30 that evening. She was perky because she slept for two hours through the transfusion --- next time, I think I’ll take a nap at the same time!
Speaking of next time, despite the fact that her counts have remained strong on 100 percent of 6mp and 66 percent of methotrexate, I was given the option to continue the IVIG transfusions through the end of treatment in December. It was an odd feeling, to have the oncologist look at me and say, “We’ll totally leave the decision up to you” ….. I don’t know if I *want* that kind of power!
Considering “cold and flu” season is coming up, and the only downfall to the transfusion is the time it takes to administer, I opted to go ahead and have Kendrie continue receiving it. We’ve already driven 100 miles to the clinic, and have another 100 to go to get back home; might as well get the most bang for our buck while we’re there, right?
Making the appointment for next month was both complicated, and surreal. She is due for a spinal, so must be NPO (no food for six hours before hand) but also needs a block of three or four hours for the IVIG transfusion ….. We had to coordinate transfusion rooms, sedation/procedure rooms, etc., how long will she have to go without eating that day, etc. But what made it surreal to me is that this will be (God willing!) her last ever spinal tap!!! One final time of someone sticking a needle in her spine, sucking fluid out to look under a microscope and make sure it is still leukemia-free, and then injecting poison into the empty space left by the fluid to prevent leukemia cells from hiding out in the spinal fluid/ central nervous system area. Yahoo, only one more! Who knew I could get so wound up about such a barbaric procedure???
And, it’s obvious we are in the midst of a steroid week here. No hellacious attitude, or hellacious appetite, but she sure feels punky. Lots of whining, lots of tears. And that’s how it affects ME, think how Kendrie must feel. In fact, I just returned from picking her up at school for the second day this week. She comes home and sleeps all afternoon --- and this is the kid who never naps. So I know she feels pretty crappy. Funny, they lowered her chemo doses due to low counts, but steroids are one drug that apparently never gets reduced --- it will definitely be the drug I will miss the LEAST when we get off this crazy chemo train. And that's saying something, ha!
Lastly, car #400,000, where are you??? Whoever the 400,000th visitor to Kendrie’s Caringbridge site, you didn’t let us know in the guestbook! So, like horseshoes and hand grenades, “close” is going to have to count! So, the winner, at 399,996 is Sarina from Pennsylvania! Thanks, BIG thanks, to all of you for checking in on us so faithfully, and Sarina, we will be making a Caringbridge donation in your name…. thank you! And thank you to everyone for continuing to hold Clare and Jay in your thoughts, and for visiting their websites.
I hope you all have a great weekend!
Kristie
************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I am missing a perfectly good cooking activity and reading time today at school because I don’t feel good. It’s barely 2 in the afternoon and I’ve already put on my new Yu-Gi-Oh pajamas that I got for my birthday. Now, I like my creature comforts as much as the next girl, and those pj’s *are* pretty darn soft, but I do not like feeling so icky and laying down during the day!
BEST PART ABOUT HAVING CANCER TODAY: Only two doses of steroids left this month … that’s the best thing I can think of so far.
PS --- Please visit Julianna Banana's Journal Entry from 9/16/05 for a very touching tribute to a wonderful angel named Marcus. I consider myself a devoted JB cult-ee and never miss an entry --- but this one especially spoke to me.
Sunday, September 11, 2005
QUIET HEROES
**Quiet (kwi’it) adj. 1. making little or no noise or sound 2. free or comparatively free from noise 3. silent 4. restrained in speech or manner etc. etc.
Ok, well, THAT’S not me!
**Hero (her’o) 1. a man of distinguished courage or ability admired for his brave deeds and noble qualities 2. any person who has heroic qualities 3. the principal male character in a story 4. an individual possessing godlike prowess and beneficence who often came to be honored as a deity
Well, I’ve got to admit that #4 is intriguing…. But it’s really not me, either.
Yet, despite the fact I am neither quiet nor heroic, I was thrilled yesterday to be invited to attend the CureSearch Quiet Heroes luncheon, honoring the moms (and a few dads) of children with cancer.
(In case you haven’t figured it out yet, this journal entry is ALL. ABOUT. ME.)
This luncheon was the brainchild of Chris Glavine, wife of NY Mets pitcher Tom Glavine, who works with the MLB Commissioner’s Initiative for Kids, which lists CureSearch as one of their beneficiaries. Chris’s idea, and then put together with the hard work and tireless efforts of Kristin Connor and the numerous CureSearch workers and volunteers.
Chris (since I don’t know her personally, I feel it would be more respectful to call her Mrs. Glavine, but I’ve got to be at least ten years older than her, so then *that* sounds silly, too) wanted to do something to pay tribute to moms of kids with cancer …. the “Quiet Heroes”. She stated in her welcome speech yesterday that it started out as an intimate gathering, perhaps a hundred people total, where moms could be made to feel special for a day and enjoy one another’s company. A time of reflection, celebration, comfort, and understanding among peers. And despite the fact the event grew to include several hundred people, from all over the country, they certainly managed to accomplish all of those things!
I so very much enjoyed getting to visit with the moms I’ve met online, at Camp Sunshine, The Lighthouse, while inpatient, while at clinic, etc. Friends of friends, Caringbridge sites that I follow, people who kindly follow our Caringbridge site, members of the medical community, etc. And especially, the people who worked so hard to put the event together, and the sponsors and volunteers who donated their time, efforts, money, gifts, silent auction items, and most of all, their love and support for the moms who were able to attend.
We had a wonderful meal at the Westin in Atlanta and were able to enjoy the keynote speakers Linda Armstrong Kelly … mom to that guy, oh, what’s his name? The one that rides a bike around???? (Kidding, of course. The part of her speech I found most amusing was when she admitted that while pregnant with Lance, she wanted a girl and planned to name her Erica, after “Erica Kane” on All My Children …. )
I enjoyed the first keynote speaker even more, Liz Scott, mom to Alex Scott of Alex’s Lemonade Stand. If you are not familiar with Alex Scott of Alex’s Lemonade Stand, it’s an inspiring story of selflessness and compassion; a touching story of a little girl with neuroblastoma who accomplished more in a few short years than most adults do in a lifetime. While it sounds insensitive to say I “enjoyed” Liz Scott’s speech, I can honestly say I was touched and so grateful for the opportunity to hear her, and even managed to laugh between the tears.
In addition to the luncheon, goody bags and gifts on our tables (thank you again to the sponsors and donors!) there was also a Silent Auction/fundraiser beforehand that I sincerely hope raised a boatload of money for CureSearch. Yes, it’s fabulous that CureSearch worked with Chris Glavine to honor the moms … but the most admirable work they do is continually raising funds to research a cure and bring awareness for childhood cancer. Raising funds is HUGE, and I was happy to help out by bidding on (and winning!) a 3-night stay in a Callaway Gardens villa! Although Blaine gave me some good-natured grief for spending that much money, I know our family will love the getaway and it’s easy to justify when you consider the cause. And a big thank you to Denise, who surprised me by outbidding me on an item I wanted and then giving it to me as a gift ….. pretty classy, if I say so myself! Thank you, Denise!
As I looked around the table, there was no doubt in my mind that I was sitting amongst heroes. You can visit their children’s sites and read story after story of chemo, radiation, surgery, transplant …. and more importantly, courage, hope, and love. And as I looked around the room, I saw even more:
Brady's mom, Gwen's mom, Camp Jack's moms, Madie's mom, Jacob's mom, Benjamins' mom, Jack's mom, Will's mom, Joshua's mom, and William's mom, just to name a few. I know there are others that I've missed .... Special tribute going out to Hayley's parents and Carter's family for sharing the day with everyone.
And even more moms and dads that I’ve never met and probably will never meet.
The timing of this luncheon was profound to me, for several reasons. First of all, of course, is the fact it was held one day before the anniversary of 9/11. People all across our country suffered, and continued to suffer, the effects of that tragic day. Currently, people in our country are suffering the effects of Hurricane Katrina. While so many of the news reports disturbed me to the point of turning off the TV, I am especially haunted by the elderly, the infirm, and the children. And even more especially (which I think is appropriate, given our place in life) by the children whose cancer care has been disrupted by the hurricane. I can’t imagine how frightening it would be if Scottish Rite blew away and we were left floundering to receive critical care for Kendrie. I know the care is out there, and I’m hopeful people are able to receive it without too much trouble, but sometimes I just wonder, when is enough, enough for these people?
There was an outpouring of public and government support after 9/11, as there should have been. There appears to be an outpouring of support for the victims of Katrina, as well there should be. Childhood cancer is not yet getting support on that scale, but the people at CureSearch are working to change that. Events like yesterday’s Quiet Heroes Luncheon can only help to highlight *our* tragedy, the one our families live with day in and day out.
September is Childhood Cancer Awareness Month. Did you know that? Does anybody know that? I know what month October is. Who doesn’t? September will long be remembered for the anniversary of a tragic event in NYC, and now, one of the greatest natural disasters in our country’s history. The littlest victims in our country deserve attention, too.
I’m rambling now, aren’t I? And what makes it worse is that I sound ungrateful. I just wish everyone in our nation could be as outraged that kids are dying of cancer --every single day-- as they are about the other terrible things that have happened.
So for now, I will pause in my gratefulness for people like Chris Glavine, Kristin Connor, and CureSearch who are helping us both short-term and long-term, and thank them for recognizing the moms …. the quiet heroes, and hope that the smallest, most innocent heroes get the help and recognition they need to beat this disease once and for all. The “Mistress of Ceremonies” yesterday ended the luncheon with the comment that she thought this was a wonderful event, and she hoped the first of many … that she hoped to see us at the next one hundred and fifty. I understood her sentiment; it was a heartwarming day and deserves to be repeated … but I turned to my dear friend Jenny sitting next to me and said, “Good heavens, I hope she’s wrong. It would be better if we never had a need for one of these luncheons again.”
There are lots of schmaltzy poems on the internet about Motherhood….. and although I don’t normally consider myself a schmaltz kind of person, I’ll leave you with my favorite today:
MOTHER’S HEART
(author unknown)
I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun,
You’re part of me, my little one.
I daydream of the things we’ll share,
Like late-night bottles and teddy bears.
Like first-steps and skinned knees,
Like bedtime stories and ABC’s.
I think of things you’ll want to know,
Like how birds fly and flowers grow.
I think of lessons I’ll need to share,
Like standing tall and playing fair.
When I first saw your precious face,
I prayed your life be touched with grace.
I thanked the angels from above,
And promised you unending love.
Each night I lay you down to sleep,
I gently kiss your head and cheek,
I count your fingers and your toes,
I memorize your eyes and nose.
I linger at your bedroom door,
Awed each day how I love you more.
Through misty eyes, I dim the light,
I whisper “I love you” every night.
I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child, our journeys begun,
My heart is yours forever, little one.
Have a great day,
Kristie
PS. We have two friends who are really struggling right now and I'd like to ask you to visit their sites and give them some encouragment: Clare from Maryland, whose parents have set aside Monday morning at 10am for a world-wide moment of prayer, thoughts, and well wishes for Clare and she continues to struggle in her ALL relapse treatment. Also, Jay from Georgia, whose family attends our local support group. Jay is in Memphis receiving experimental treatment at St. Jude for his medulloblastoma relapse and I know his parents, Cindy and Jason, could really use some encouragement. You might not think something as simple as a kind note from a total stranger in a guestbook can be as heart-lifting as it can ... but trust me ... those notes are priceless and mean more to us parents than you could ever know.
Ok, well, THAT’S not me!
**Hero (her’o) 1. a man of distinguished courage or ability admired for his brave deeds and noble qualities 2. any person who has heroic qualities 3. the principal male character in a story 4. an individual possessing godlike prowess and beneficence who often came to be honored as a deity
Well, I’ve got to admit that #4 is intriguing…. But it’s really not me, either.
Yet, despite the fact I am neither quiet nor heroic, I was thrilled yesterday to be invited to attend the CureSearch Quiet Heroes luncheon, honoring the moms (and a few dads) of children with cancer.
(In case you haven’t figured it out yet, this journal entry is ALL. ABOUT. ME.)
This luncheon was the brainchild of Chris Glavine, wife of NY Mets pitcher Tom Glavine, who works with the MLB Commissioner’s Initiative for Kids, which lists CureSearch as one of their beneficiaries. Chris’s idea, and then put together with the hard work and tireless efforts of Kristin Connor and the numerous CureSearch workers and volunteers.
Chris (since I don’t know her personally, I feel it would be more respectful to call her Mrs. Glavine, but I’ve got to be at least ten years older than her, so then *that* sounds silly, too) wanted to do something to pay tribute to moms of kids with cancer …. the “Quiet Heroes”. She stated in her welcome speech yesterday that it started out as an intimate gathering, perhaps a hundred people total, where moms could be made to feel special for a day and enjoy one another’s company. A time of reflection, celebration, comfort, and understanding among peers. And despite the fact the event grew to include several hundred people, from all over the country, they certainly managed to accomplish all of those things!
I so very much enjoyed getting to visit with the moms I’ve met online, at Camp Sunshine, The Lighthouse, while inpatient, while at clinic, etc. Friends of friends, Caringbridge sites that I follow, people who kindly follow our Caringbridge site, members of the medical community, etc. And especially, the people who worked so hard to put the event together, and the sponsors and volunteers who donated their time, efforts, money, gifts, silent auction items, and most of all, their love and support for the moms who were able to attend.
We had a wonderful meal at the Westin in Atlanta and were able to enjoy the keynote speakers Linda Armstrong Kelly … mom to that guy, oh, what’s his name? The one that rides a bike around???? (Kidding, of course. The part of her speech I found most amusing was when she admitted that while pregnant with Lance, she wanted a girl and planned to name her Erica, after “Erica Kane” on All My Children …. )
I enjoyed the first keynote speaker even more, Liz Scott, mom to Alex Scott of Alex’s Lemonade Stand. If you are not familiar with Alex Scott of Alex’s Lemonade Stand, it’s an inspiring story of selflessness and compassion; a touching story of a little girl with neuroblastoma who accomplished more in a few short years than most adults do in a lifetime. While it sounds insensitive to say I “enjoyed” Liz Scott’s speech, I can honestly say I was touched and so grateful for the opportunity to hear her, and even managed to laugh between the tears.
In addition to the luncheon, goody bags and gifts on our tables (thank you again to the sponsors and donors!) there was also a Silent Auction/fundraiser beforehand that I sincerely hope raised a boatload of money for CureSearch. Yes, it’s fabulous that CureSearch worked with Chris Glavine to honor the moms … but the most admirable work they do is continually raising funds to research a cure and bring awareness for childhood cancer. Raising funds is HUGE, and I was happy to help out by bidding on (and winning!) a 3-night stay in a Callaway Gardens villa! Although Blaine gave me some good-natured grief for spending that much money, I know our family will love the getaway and it’s easy to justify when you consider the cause. And a big thank you to Denise, who surprised me by outbidding me on an item I wanted and then giving it to me as a gift ….. pretty classy, if I say so myself! Thank you, Denise!
As I looked around the table, there was no doubt in my mind that I was sitting amongst heroes. You can visit their children’s sites and read story after story of chemo, radiation, surgery, transplant …. and more importantly, courage, hope, and love. And as I looked around the room, I saw even more:
Brady's mom, Gwen's mom, Camp Jack's moms, Madie's mom, Jacob's mom, Benjamins' mom, Jack's mom, Will's mom, Joshua's mom, and William's mom, just to name a few. I know there are others that I've missed .... Special tribute going out to Hayley's parents and Carter's family for sharing the day with everyone.
And even more moms and dads that I’ve never met and probably will never meet.
The timing of this luncheon was profound to me, for several reasons. First of all, of course, is the fact it was held one day before the anniversary of 9/11. People all across our country suffered, and continued to suffer, the effects of that tragic day. Currently, people in our country are suffering the effects of Hurricane Katrina. While so many of the news reports disturbed me to the point of turning off the TV, I am especially haunted by the elderly, the infirm, and the children. And even more especially (which I think is appropriate, given our place in life) by the children whose cancer care has been disrupted by the hurricane. I can’t imagine how frightening it would be if Scottish Rite blew away and we were left floundering to receive critical care for Kendrie. I know the care is out there, and I’m hopeful people are able to receive it without too much trouble, but sometimes I just wonder, when is enough, enough for these people?
There was an outpouring of public and government support after 9/11, as there should have been. There appears to be an outpouring of support for the victims of Katrina, as well there should be. Childhood cancer is not yet getting support on that scale, but the people at CureSearch are working to change that. Events like yesterday’s Quiet Heroes Luncheon can only help to highlight *our* tragedy, the one our families live with day in and day out.
September is Childhood Cancer Awareness Month. Did you know that? Does anybody know that? I know what month October is. Who doesn’t? September will long be remembered for the anniversary of a tragic event in NYC, and now, one of the greatest natural disasters in our country’s history. The littlest victims in our country deserve attention, too.
I’m rambling now, aren’t I? And what makes it worse is that I sound ungrateful. I just wish everyone in our nation could be as outraged that kids are dying of cancer --every single day-- as they are about the other terrible things that have happened.
So for now, I will pause in my gratefulness for people like Chris Glavine, Kristin Connor, and CureSearch who are helping us both short-term and long-term, and thank them for recognizing the moms …. the quiet heroes, and hope that the smallest, most innocent heroes get the help and recognition they need to beat this disease once and for all. The “Mistress of Ceremonies” yesterday ended the luncheon with the comment that she thought this was a wonderful event, and she hoped the first of many … that she hoped to see us at the next one hundred and fifty. I understood her sentiment; it was a heartwarming day and deserves to be repeated … but I turned to my dear friend Jenny sitting next to me and said, “Good heavens, I hope she’s wrong. It would be better if we never had a need for one of these luncheons again.”
There are lots of schmaltzy poems on the internet about Motherhood….. and although I don’t normally consider myself a schmaltz kind of person, I’ll leave you with my favorite today:
MOTHER’S HEART
(author unknown)
I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun,
You’re part of me, my little one.
I daydream of the things we’ll share,
Like late-night bottles and teddy bears.
Like first-steps and skinned knees,
Like bedtime stories and ABC’s.
I think of things you’ll want to know,
Like how birds fly and flowers grow.
I think of lessons I’ll need to share,
Like standing tall and playing fair.
When I first saw your precious face,
I prayed your life be touched with grace.
I thanked the angels from above,
And promised you unending love.
Each night I lay you down to sleep,
I gently kiss your head and cheek,
I count your fingers and your toes,
I memorize your eyes and nose.
I linger at your bedroom door,
Awed each day how I love you more.
Through misty eyes, I dim the light,
I whisper “I love you” every night.
I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child, our journeys begun,
My heart is yours forever, little one.
Have a great day,
Kristie
PS. We have two friends who are really struggling right now and I'd like to ask you to visit their sites and give them some encouragment: Clare from Maryland, whose parents have set aside Monday morning at 10am for a world-wide moment of prayer, thoughts, and well wishes for Clare and she continues to struggle in her ALL relapse treatment. Also, Jay from Georgia, whose family attends our local support group. Jay is in Memphis receiving experimental treatment at St. Jude for his medulloblastoma relapse and I know his parents, Cindy and Jason, could really use some encouragement. You might not think something as simple as a kind note from a total stranger in a guestbook can be as heart-lifting as it can ... but trust me ... those notes are priceless and mean more to us parents than you could ever know.
Monday, September 05, 2005
THE FINAL COUNTDOWN --- 100 DAYS TO GO!
Wednesday morning update: Well, although Kendrie is home from school again today with a nasty sounding cough and runny/stuffy nose, the fevers have stopped. We spent the day driving to and from the clinic for IV Rocephin, but since her ANC was 1500, we were able to go home .... just warned to watch for more fever, or if she starts feeling seriously punky. So, the verdict appears to be nothing more than a late-summer cold, which for normal people is just annoying, but for a kid with a port-a-cath in her chest, is just a little bit more. I'm pretty sure she'll be back at school tomorrow, anyway. And thanks for the happy birthday wishes for me, too. Yes, Natalie, you are correct. 25. :) (Kidding. I am frighteningly close to finding out for myself if 40 is *really* the new 30!) :)
Tues morning update: Well, scratch my optimistic comment about "no fever". Kendrie woke up at 3am running a little over 101, and it hasn't broke yet, so the on-call oncologist has instructed us to head to the clinic for a fun-filled day of bloodwork and IV antibiotics. Not to blab toooooo much personal information, but happy *&^*&^# birthday to me.
*****************************************************
First of all, thanks so much to all of you who left Kendrie birthday wishes in the guestbook over the weekend. I was out of town and didn’t check the guestbook between Friday morning and last night, so logging in and seeing all those well wishes for her was truly heart-warming. I print out the guestbook every so often and I know that the same messages that mean so much to Blaine and I, as a show of support now, will mean just as much to Kendrie someday. She likes hearing them nowadays, but I’m confident that when she gets older they will be even more precious. I will update with photos of her birthday party after the weekend, also. (holding your breath, aren’t you?) :)
Now, for our “big” news ---- she only has 100 days of treatment left! Actually, I think its 102 and that I must have miscounted somewhere, but we’ll jiggle the dates in a later entry. Today, we feel like celebrating this milestone! Can you believe that when she started we were staring down 786 days of protocol?? One hundred might sound like a lot to some of you, but compared to 786, I think it will fly by. Let me sum it up for you in another way:
Only 120 doses of oral chemo pills left. Some nights it’s four pills, some nights it’s eight, but she gets them all at the same time, and she only gets morning steroids five days a month, so “technically”, it’s only 120 doses to go!
Only 56 doses of oral prophylactic liquid antibiotic to go. Sort of. She’ll stay on this antibiotic for several months after treatment, as a preventative measure …. but only 56 "official" doses to go!
Barring any complications or unexplained fevers, only four port accesses to go!
Only four doses of IV chemotherapy to go!
Only two transfusions of IVIG to go!
Only ONE spinal tap to go!
I really feel as though we can see the light at the end of the tunnel. The picture at the top of the page is supposed to be all three kids, holding up fingers to show the wonderful number 100 …. but Blaine had to be recruited because Brayden was too busy pouting and telling me how much she hates me to pose. Five minutes later, she and Kellen were doing the cha-cha around the living room. Truly, she’s a sweet child. Either entering the pre-teen years, or possessed by Satan. I’m not sure which.
Regarding these final 100 days, I’m guessing most of the parents out there can identify with some of my feelings. When your first child is born, you are so excited to reach each milestone (First bath! Solid food! First tooth! Crawling! Walking!) that you wind up wishing away their first year and then sitting back wondering where the hell the time went.
With your second child, you’re so busy making sure everyone is fed and clean and dry and safe and not flushing the remote down the toilet that at the end of *their* first year, you look up and wonder where the hell the time went.
With your third child, especially if you know it will be your last child, you have finally learned to stop and smell the roses. (Which is better than the smell of dirty diapers you’ve been firmly entrenched in for the previous two years!) With Kendrie, I snuggled more, relaxed more, and simply enjoyed the present for what it was. Hey, I had three kids under the age of two and a half, but I was just getting the hang of this peaceful, savoring-the-moment thing.
Fast forward to October 13, 2003, the day she was diagnosed with leukemia.
On October 16, the day she began her chemotherapy treatment, I didn’t think those 786 days would ever end. I was terrified we wouldn’t GET to the end. I admit it, I have blatantly and willingly wished away the past two years of her life (Intensification! Consolidation! First Interim Maintenance! First Delayed Intensification! Second IM! Second DI! Long-term Maintenance!) and, I admit, I will be wishing away the next 100 days as well.
I’m sure when these twenty-six months are behind us, I will regret that I spent so much time wishing for it to hurry up and be over. I’m sure there have been moments …. the present … that I have missed because my eyes were too fixated on the goal at the end. Just getting to the end is a miracle. Maybe being excited about it isn’t such a terrible thing.
I hope everyone is having a nice Labor Day weekend. We had plans to take the kids fishing, then out to dinner to celebrate Kendrie’s birthday. Unfortunately, she woke up this morning with a stuffy/runny nose and a cough. We started the summer with a cold, I guess it’s only fitting that we end with one as well. Hopefully she’ll be feeling better in time for school tomorrow. No fever, so we’re not too worried yet. In light of everything that has taken place a few hundred miles to our west, it seems a little frivolous to be having a birthday dinner anyway. I feel I should write something profound about the loss and devastation, but there really aren’t any words. Plus, to be honest, I’m giving thanks for the last 686 days, and looking ahead to the next 100. I wish the same peace for the hurricane survivors.
Fondly,
Kristie
***************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I don’t think it’s cancer-related, but I am getting dang sick and tired of coughing and sneezing today, and of my mom and dad checking my forehead all day. They think they are so sneaky, but I can see right through them! “Checking to see if any more hair has grown” …. My foot!
BEST PART ABOUT HAVING CANCER TODAY: Well, at least I just took my last dose of Bactrim a few minutes ago and don’t have to take any more of that foul-tasting crap for the next six days --- that’s a good thing, right?
PS. Hey! We have been truly blessed by the family and friends that have followed along on our journey and who faithfully continue to check in on my insane journal ramblings. According to my calculations, we should hit visitor #400,000 sometime near the end of this week! If you are that person, would you please sign the guestbook and let us know? I'd be honored to make a Caringbridge donation in your honor ... much like our dear friends Mr. Bruce and Mrs. Sandy did for Kendrie last week. Thank you!
Tues morning update: Well, scratch my optimistic comment about "no fever". Kendrie woke up at 3am running a little over 101, and it hasn't broke yet, so the on-call oncologist has instructed us to head to the clinic for a fun-filled day of bloodwork and IV antibiotics. Not to blab toooooo much personal information, but happy *&^*&^# birthday to me.
*****************************************************
First of all, thanks so much to all of you who left Kendrie birthday wishes in the guestbook over the weekend. I was out of town and didn’t check the guestbook between Friday morning and last night, so logging in and seeing all those well wishes for her was truly heart-warming. I print out the guestbook every so often and I know that the same messages that mean so much to Blaine and I, as a show of support now, will mean just as much to Kendrie someday. She likes hearing them nowadays, but I’m confident that when she gets older they will be even more precious. I will update with photos of her birthday party after the weekend, also. (holding your breath, aren’t you?) :)
Now, for our “big” news ---- she only has 100 days of treatment left! Actually, I think its 102 and that I must have miscounted somewhere, but we’ll jiggle the dates in a later entry. Today, we feel like celebrating this milestone! Can you believe that when she started we were staring down 786 days of protocol?? One hundred might sound like a lot to some of you, but compared to 786, I think it will fly by. Let me sum it up for you in another way:
Only 120 doses of oral chemo pills left. Some nights it’s four pills, some nights it’s eight, but she gets them all at the same time, and she only gets morning steroids five days a month, so “technically”, it’s only 120 doses to go!
Only 56 doses of oral prophylactic liquid antibiotic to go. Sort of. She’ll stay on this antibiotic for several months after treatment, as a preventative measure …. but only 56 "official" doses to go!
Barring any complications or unexplained fevers, only four port accesses to go!
Only four doses of IV chemotherapy to go!
Only two transfusions of IVIG to go!
Only ONE spinal tap to go!
I really feel as though we can see the light at the end of the tunnel. The picture at the top of the page is supposed to be all three kids, holding up fingers to show the wonderful number 100 …. but Blaine had to be recruited because Brayden was too busy pouting and telling me how much she hates me to pose. Five minutes later, she and Kellen were doing the cha-cha around the living room. Truly, she’s a sweet child. Either entering the pre-teen years, or possessed by Satan. I’m not sure which.
Regarding these final 100 days, I’m guessing most of the parents out there can identify with some of my feelings. When your first child is born, you are so excited to reach each milestone (First bath! Solid food! First tooth! Crawling! Walking!) that you wind up wishing away their first year and then sitting back wondering where the hell the time went.
With your second child, you’re so busy making sure everyone is fed and clean and dry and safe and not flushing the remote down the toilet that at the end of *their* first year, you look up and wonder where the hell the time went.
With your third child, especially if you know it will be your last child, you have finally learned to stop and smell the roses. (Which is better than the smell of dirty diapers you’ve been firmly entrenched in for the previous two years!) With Kendrie, I snuggled more, relaxed more, and simply enjoyed the present for what it was. Hey, I had three kids under the age of two and a half, but I was just getting the hang of this peaceful, savoring-the-moment thing.
Fast forward to October 13, 2003, the day she was diagnosed with leukemia.
On October 16, the day she began her chemotherapy treatment, I didn’t think those 786 days would ever end. I was terrified we wouldn’t GET to the end. I admit it, I have blatantly and willingly wished away the past two years of her life (Intensification! Consolidation! First Interim Maintenance! First Delayed Intensification! Second IM! Second DI! Long-term Maintenance!) and, I admit, I will be wishing away the next 100 days as well.
I’m sure when these twenty-six months are behind us, I will regret that I spent so much time wishing for it to hurry up and be over. I’m sure there have been moments …. the present … that I have missed because my eyes were too fixated on the goal at the end. Just getting to the end is a miracle. Maybe being excited about it isn’t such a terrible thing.
I hope everyone is having a nice Labor Day weekend. We had plans to take the kids fishing, then out to dinner to celebrate Kendrie’s birthday. Unfortunately, she woke up this morning with a stuffy/runny nose and a cough. We started the summer with a cold, I guess it’s only fitting that we end with one as well. Hopefully she’ll be feeling better in time for school tomorrow. No fever, so we’re not too worried yet. In light of everything that has taken place a few hundred miles to our west, it seems a little frivolous to be having a birthday dinner anyway. I feel I should write something profound about the loss and devastation, but there really aren’t any words. Plus, to be honest, I’m giving thanks for the last 686 days, and looking ahead to the next 100. I wish the same peace for the hurricane survivors.
Fondly,
Kristie
***************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I don’t think it’s cancer-related, but I am getting dang sick and tired of coughing and sneezing today, and of my mom and dad checking my forehead all day. They think they are so sneaky, but I can see right through them! “Checking to see if any more hair has grown” …. My foot!
BEST PART ABOUT HAVING CANCER TODAY: Well, at least I just took my last dose of Bactrim a few minutes ago and don’t have to take any more of that foul-tasting crap for the next six days --- that’s a good thing, right?
PS. Hey! We have been truly blessed by the family and friends that have followed along on our journey and who faithfully continue to check in on my insane journal ramblings. According to my calculations, we should hit visitor #400,000 sometime near the end of this week! If you are that person, would you please sign the guestbook and let us know? I'd be honored to make a Caringbridge donation in your honor ... much like our dear friends Mr. Bruce and Mrs. Sandy did for Kendrie last week. Thank you!
Thursday, September 01, 2005
GOAL-ORIENTED
104 Days to Go!
I just have to say how funny it is to hear that so many of you share your homes with hair twirlers like Kellen. His new nickname, based on your suggestions, is “Tornado Head” (which is much better than what I was calling him {predictably} “Alfalfa”.) Based on everyone’s personal experience, I have great faith he will either stop twirling it on his own, twirl it until he’s 80 years old and there’s not enough left to twirl, or fall somewhere in between. At least we have it narrowed down, right? :) But the fact that so many other kids out there twirl their hair is really comforting.
Now, the fact that there are so many other duct-taped whoopee cushions out there is really, truly frightening! I wonder if the manufacturers of whoopee cushions and 3M Tape are in cahoots? And why is it that husbands nation-wide think anything can be fixed with duct-tape, a Phillips head screwdriver and bungee cords? Anyway, Kendrie’s popped in another spot, and is duct-taped yet again, so I fear the life of the whoopee cushion might be coming to a slow end at our house. Oh well, there’s always Christmas, right? And we could always try to find one with a remote control…..
At any rate, I wanted to talk to you for a minute about having goals. (But let me interject here that I have no idea what is up with this song. I had this journal entry in mind and searched iTunes for “goal” and this is what I got. It’s a little bizarre, actually, but I paid 99 cents for it and I’m going to use it, by golly!)
Now, where were we? Oh yes, GOALS. I have many goals in my life, most of which are unattainable. Even if I actually lost 40 pounds (Goal #1) and somehow contrived to meet Brad Pitt (Goal #2) I doubt I could convince him to leave Angelina Jolie and come live in my house with me (Goal #3). I’m not looking for any kind of relationship with the man, I’d just like him to hang around so I can look at his chiseled features and amazing biceps all day. But I digress.
One goal that I’ve had for years, that I’ve had much more success in meeting, is that of sitting down to dinner as a family every night. Some nights it’s hard to squeeze it in between soccer and gymnastics and homework, but we mange most nights to eat together at the kitchen table. My children usually meet their dinnertime goals as well, which seem to be, in no certain order:
**Don’t eat anything Mom cooks.
**Make sure Mom knows you don’t like what she cooked.
**Poke things around with your fork, looking like you have a very bad smell on your upper lip.
**Ask Dad repeatedly if there isn’t something else you could have, avoiding the grumpy look on Mom’s face.
**Refuse to eat your dinner and then ask for a snack ten minutes later because you are “still hungry”.
All of this “not eating” gives my kids lots of time to regale us with tales of school happenings, jokes, deep, profound comments about the meaning of life, and for us to listen to them practice their farting armpit skills. Last night was no exception. We also play a game called “Two Good” where the kids take turns telling us the two best things that happened that day. This is the gist of how our conversation went last night:
Kristie: “OK, Kellen, your turn. What were your two-goods today?”
Kellen: “Um, playing soccer at recess, and staying on the green card at school”
Blaine: “The green card means you didn’t get in trouble all day, right?”
Kristie: “Kellen, you’ve gotten the green card every day since school started … good job!”
Blaine: “Is that your goal, to go the whole year on green card?”
Kellen: “No, my goal is to live to be 100”
Kristie: “I thought your goal was to eat pizza at school every day this year.”
Kellen: “That was my old goal. My new goal is to live to be 100.”
Kristie, seeing an opportunity to work some life-lessons into the conversation: “Kellen, that’s a good goal. I can think of at least three things you could do to help you live to be 100. Can you tell me what one of them might be?”
Kellen, poking discontentedly at his meal, and sounding unenthusiastic: “Um, eat your vegetables?”
Kristie: “That’s right! Very good! Take a bite of that casserole. Now, Brayden, what about you? What would help a person live to be 100?”
And the conversation went back and forth for a moment while suggestions like “Don’t smoke” “Exercise” and “Take vitamins” were issued by Brayden and Kellen. I noticed Kendrie hadn’t spoken, so I turned to her and asked, “Kendrie, can you think of anything that would help Kellen live to be 100?”
And with the wisdom and clarity of her almost-six-year-old mind, she suggested, “Um, just don’t die?”
It’s really sobering when you realize your kindergartener is smarter than you are.
So, I’m going to suggest a few goals for you Caringbridge readers as well, this holiday weekend. First of all, please take a moment to visit the site of an online friend of ours who is having a very hard time right now, Clare from Maryland. As you might remember, she relapsed with her leukemia and had a transplant almost two months ago. She is having an extremely difficult time of things right now and could use some support. Please visit her site and leave a message of encouragement for Clare and her parents.
Secondly, I mentioned the strong need for blood donations in my last journal entry. Well, it was true then, but even more true now in the wake of Hurricane Katrina. Please, if you are able, take an hour out of your day to donate a pint of blood. Your can visit the Red Cross website to find a blood drive near you and sign up online to donate.
I’m going to leave you with some statistics about blood donation that are very interesting. I blatantly stole them off of Cali Ali’s page, a remarkable young woman who finished her ALL treatment just in time for her high school graduation, and is now preparing for her freshman year in college. Her mom Marey is a strong advocate of blood donation, and if you search the journal history on Ali’s site you can see pictures of Marey and her other daughter Lexi donating. Like Ali, Kendrie will never, in her entire life, be allowed to donate blood. So those of us who ARE able to donate …. should.
Here you go. Please read through this, paying particularly close attention to numbers 48 and 55 (hey, I only need to donate 40 times to reach my #1 Goal!) and then go donate yourself. Make that YOUR goal for this week!
Thanks,
Kristie
56 Facts About Blood and Blood Donation
One for each day between your blood donation!
1. 4.5 million Americans would die each year without life saving blood transfusions.
2. Approximately 32,000 pints of blood are used each day in the United States.
3. Every two seconds someone needs blood.
4. One out of every 10 people entering a hospital needs blood.
5. Just one pint of donated blood can help save as many as three people’s lives.
6. The average adult has 10 pints of blood in his or her body.
7. One unit of blood is roughly the equivalent of one pint.
8. Blood makes up about 7 percent of your body's weight.
9. A newborn baby has about one cup of blood in his or her body.
10. The average red blood cell transfusion is 3.4 pints.
11. Blood fights against infection and helps heal wounds, keeping you healthy.
12. There are four main blood types: A, B, AB and O. AB is the universal recipient and O negative is the universal donor.
13. Blood centers often run short of type O and B blood.
14. Shortages of all types of blood occur during the summer and winter holidays.
15. If all blood donors gave 2 to 4 times a year, it would help prevent blood shortages.
16. If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood.
17. About three gallons of blood supports the entire nation's blood needs for one minute.
18. Blood donation takes four steps: medical history, quick physical, donation, and snacks.
19. The actual blood donation usually takes less than 10 minutes. The entire process, from when you sign in to the time you leave, takes about 45 minutes.
20. Giving blood will not decrease your strength.
21. You cannot get AIDS or any other infectious disease by donating blood.
22. Fourteen tests, 11 of which are for infectious diseases, are performed on each unit of donated blood.
23. Any company, community organization, place of worship or individual may contact their local community blood center to host a blood drive.
24. People donate blood out of a sense of duty and community spirit, not to make money. They are not paid for their donation.
25. Much of today's medical care depends on a steady supply of blood from healthy donors.
26. One unit of blood can be separated into several components (red blood cells, white blood cells, plasma, platelets and cryoprecipitate).
27. Red blood cells carry oxygen to the body’s organs and tissue.
28. There are about one billion red blood cells in two to three drops of blood.
29. Red blood cells live about 120 days in the circulatory system.
30. Platelets help blood to clot and give those with leukemia and other cancers a chance to live.
31. Apheresis (ay-fur-ee-sis) is a special kind of blood donation that allows a donor to give specific blood components, such as platelets.
32. Donated red blood cells must be used within 42 days of collection.
33. Donated platelets must be used within five days of collection.
34. Plasma can be frozen and used for up to a year.
35. Plasma is a pale yellow mixture of water, proteins and salts.
36. Plasma, which is 90 percent water, constitutes 55 percent of blood volume.
37. Healthy bone marrow makes a constant supply of red cells, plasma and platelets.
38. People who have been in car accidents and suffered massive blood loss can need transfusions of 50 pints or more of red blood cells.
39. The average bone marrow transplant requires 120 units of platelets and about 20 units of red blood cells. Patients undergoing bone marrow transplants need platelets donations from about 120 people and red blood cells from about 20 people.
40. Severe burn victims can need 20 units of platelets during their treatment.
41. Children being treated for cancer, premature infants, and children having heart surgery need blood and platelets from donors of all types.
42. Anemic patients need blood transfusions to increase their iron levels.
43. Cancer, transplant and trauma patients and patients undergoing open-heart surgery require platelet transfusions to survive.
44. Sickle cell disease is an inherited disease that affects more than 80,000 people in the United States, 98 percent of whom are of African descent. Some patients with complications from severe sickle cell disease receive blood transfusions every month – up to 4 pints at a time.
45. In the days following the September 11 attacks, a half a million people donated blood.
46. Females receive 53 percent of blood transfused; males receive 47 percent.
47. 94 percent of all blood donors are registered voters.
48. 60 percent of the US population is eligible to donate – only 5 percent do on a yearly basis.
49. 17 percent of non-donors cite “never thought about it” as the main reason for not giving, while 15 percent say they’re “too busy.” The #1 reason donors say they give is because they “want to help others.”
50. After donating blood, you replace these red blood cells within 3 to 4 weeks. It takes eight weeks to restore the iron lost after donating.
51. Granulocytes, a type of white blood cell, roll along blood vessel walls in search of bacteria to eat.
52. White cells are the body's primary defense against infection.
53. There is no substitute for human blood.
54. It’s about Life.
55. Since a pint is pound, you lose a pound every time you donate blood.
56. Anyone who is in good health, is at least 17 years old, and weighs at least 110 pounds may donate blood every 56 days.
PS. BIG NEWS ALERT!!! Although the celebration isn’t until next weekend, tomorrow is actually Kendrie’s 6th Birthday! Please leave her a note in the guestbook, wishing her a happy birthday. I’ll be sure to update with party details and pictures next weekend. Then, be sure to go to Clare’s site and leave a kind note for her as well. Thanks!
I just have to say how funny it is to hear that so many of you share your homes with hair twirlers like Kellen. His new nickname, based on your suggestions, is “Tornado Head” (which is much better than what I was calling him {predictably} “Alfalfa”.) Based on everyone’s personal experience, I have great faith he will either stop twirling it on his own, twirl it until he’s 80 years old and there’s not enough left to twirl, or fall somewhere in between. At least we have it narrowed down, right? :) But the fact that so many other kids out there twirl their hair is really comforting.
Now, the fact that there are so many other duct-taped whoopee cushions out there is really, truly frightening! I wonder if the manufacturers of whoopee cushions and 3M Tape are in cahoots? And why is it that husbands nation-wide think anything can be fixed with duct-tape, a Phillips head screwdriver and bungee cords? Anyway, Kendrie’s popped in another spot, and is duct-taped yet again, so I fear the life of the whoopee cushion might be coming to a slow end at our house. Oh well, there’s always Christmas, right? And we could always try to find one with a remote control…..
At any rate, I wanted to talk to you for a minute about having goals. (But let me interject here that I have no idea what is up with this song. I had this journal entry in mind and searched iTunes for “goal” and this is what I got. It’s a little bizarre, actually, but I paid 99 cents for it and I’m going to use it, by golly!)
Now, where were we? Oh yes, GOALS. I have many goals in my life, most of which are unattainable. Even if I actually lost 40 pounds (Goal #1) and somehow contrived to meet Brad Pitt (Goal #2) I doubt I could convince him to leave Angelina Jolie and come live in my house with me (Goal #3). I’m not looking for any kind of relationship with the man, I’d just like him to hang around so I can look at his chiseled features and amazing biceps all day. But I digress.
One goal that I’ve had for years, that I’ve had much more success in meeting, is that of sitting down to dinner as a family every night. Some nights it’s hard to squeeze it in between soccer and gymnastics and homework, but we mange most nights to eat together at the kitchen table. My children usually meet their dinnertime goals as well, which seem to be, in no certain order:
**Don’t eat anything Mom cooks.
**Make sure Mom knows you don’t like what she cooked.
**Poke things around with your fork, looking like you have a very bad smell on your upper lip.
**Ask Dad repeatedly if there isn’t something else you could have, avoiding the grumpy look on Mom’s face.
**Refuse to eat your dinner and then ask for a snack ten minutes later because you are “still hungry”.
All of this “not eating” gives my kids lots of time to regale us with tales of school happenings, jokes, deep, profound comments about the meaning of life, and for us to listen to them practice their farting armpit skills. Last night was no exception. We also play a game called “Two Good” where the kids take turns telling us the two best things that happened that day. This is the gist of how our conversation went last night:
Kristie: “OK, Kellen, your turn. What were your two-goods today?”
Kellen: “Um, playing soccer at recess, and staying on the green card at school”
Blaine: “The green card means you didn’t get in trouble all day, right?”
Kristie: “Kellen, you’ve gotten the green card every day since school started … good job!”
Blaine: “Is that your goal, to go the whole year on green card?”
Kellen: “No, my goal is to live to be 100”
Kristie: “I thought your goal was to eat pizza at school every day this year.”
Kellen: “That was my old goal. My new goal is to live to be 100.”
Kristie, seeing an opportunity to work some life-lessons into the conversation: “Kellen, that’s a good goal. I can think of at least three things you could do to help you live to be 100. Can you tell me what one of them might be?”
Kellen, poking discontentedly at his meal, and sounding unenthusiastic: “Um, eat your vegetables?”
Kristie: “That’s right! Very good! Take a bite of that casserole. Now, Brayden, what about you? What would help a person live to be 100?”
And the conversation went back and forth for a moment while suggestions like “Don’t smoke” “Exercise” and “Take vitamins” were issued by Brayden and Kellen. I noticed Kendrie hadn’t spoken, so I turned to her and asked, “Kendrie, can you think of anything that would help Kellen live to be 100?”
And with the wisdom and clarity of her almost-six-year-old mind, she suggested, “Um, just don’t die?”
It’s really sobering when you realize your kindergartener is smarter than you are.
So, I’m going to suggest a few goals for you Caringbridge readers as well, this holiday weekend. First of all, please take a moment to visit the site of an online friend of ours who is having a very hard time right now, Clare from Maryland. As you might remember, she relapsed with her leukemia and had a transplant almost two months ago. She is having an extremely difficult time of things right now and could use some support. Please visit her site and leave a message of encouragement for Clare and her parents.
Secondly, I mentioned the strong need for blood donations in my last journal entry. Well, it was true then, but even more true now in the wake of Hurricane Katrina. Please, if you are able, take an hour out of your day to donate a pint of blood. Your can visit the Red Cross website to find a blood drive near you and sign up online to donate.
I’m going to leave you with some statistics about blood donation that are very interesting. I blatantly stole them off of Cali Ali’s page, a remarkable young woman who finished her ALL treatment just in time for her high school graduation, and is now preparing for her freshman year in college. Her mom Marey is a strong advocate of blood donation, and if you search the journal history on Ali’s site you can see pictures of Marey and her other daughter Lexi donating. Like Ali, Kendrie will never, in her entire life, be allowed to donate blood. So those of us who ARE able to donate …. should.
Here you go. Please read through this, paying particularly close attention to numbers 48 and 55 (hey, I only need to donate 40 times to reach my #1 Goal!) and then go donate yourself. Make that YOUR goal for this week!
Thanks,
Kristie
56 Facts About Blood and Blood Donation
One for each day between your blood donation!
1. 4.5 million Americans would die each year without life saving blood transfusions.
2. Approximately 32,000 pints of blood are used each day in the United States.
3. Every two seconds someone needs blood.
4. One out of every 10 people entering a hospital needs blood.
5. Just one pint of donated blood can help save as many as three people’s lives.
6. The average adult has 10 pints of blood in his or her body.
7. One unit of blood is roughly the equivalent of one pint.
8. Blood makes up about 7 percent of your body's weight.
9. A newborn baby has about one cup of blood in his or her body.
10. The average red blood cell transfusion is 3.4 pints.
11. Blood fights against infection and helps heal wounds, keeping you healthy.
12. There are four main blood types: A, B, AB and O. AB is the universal recipient and O negative is the universal donor.
13. Blood centers often run short of type O and B blood.
14. Shortages of all types of blood occur during the summer and winter holidays.
15. If all blood donors gave 2 to 4 times a year, it would help prevent blood shortages.
16. If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood.
17. About three gallons of blood supports the entire nation's blood needs for one minute.
18. Blood donation takes four steps: medical history, quick physical, donation, and snacks.
19. The actual blood donation usually takes less than 10 minutes. The entire process, from when you sign in to the time you leave, takes about 45 minutes.
20. Giving blood will not decrease your strength.
21. You cannot get AIDS or any other infectious disease by donating blood.
22. Fourteen tests, 11 of which are for infectious diseases, are performed on each unit of donated blood.
23. Any company, community organization, place of worship or individual may contact their local community blood center to host a blood drive.
24. People donate blood out of a sense of duty and community spirit, not to make money. They are not paid for their donation.
25. Much of today's medical care depends on a steady supply of blood from healthy donors.
26. One unit of blood can be separated into several components (red blood cells, white blood cells, plasma, platelets and cryoprecipitate).
27. Red blood cells carry oxygen to the body’s organs and tissue.
28. There are about one billion red blood cells in two to three drops of blood.
29. Red blood cells live about 120 days in the circulatory system.
30. Platelets help blood to clot and give those with leukemia and other cancers a chance to live.
31. Apheresis (ay-fur-ee-sis) is a special kind of blood donation that allows a donor to give specific blood components, such as platelets.
32. Donated red blood cells must be used within 42 days of collection.
33. Donated platelets must be used within five days of collection.
34. Plasma can be frozen and used for up to a year.
35. Plasma is a pale yellow mixture of water, proteins and salts.
36. Plasma, which is 90 percent water, constitutes 55 percent of blood volume.
37. Healthy bone marrow makes a constant supply of red cells, plasma and platelets.
38. People who have been in car accidents and suffered massive blood loss can need transfusions of 50 pints or more of red blood cells.
39. The average bone marrow transplant requires 120 units of platelets and about 20 units of red blood cells. Patients undergoing bone marrow transplants need platelets donations from about 120 people and red blood cells from about 20 people.
40. Severe burn victims can need 20 units of platelets during their treatment.
41. Children being treated for cancer, premature infants, and children having heart surgery need blood and platelets from donors of all types.
42. Anemic patients need blood transfusions to increase their iron levels.
43. Cancer, transplant and trauma patients and patients undergoing open-heart surgery require platelet transfusions to survive.
44. Sickle cell disease is an inherited disease that affects more than 80,000 people in the United States, 98 percent of whom are of African descent. Some patients with complications from severe sickle cell disease receive blood transfusions every month – up to 4 pints at a time.
45. In the days following the September 11 attacks, a half a million people donated blood.
46. Females receive 53 percent of blood transfused; males receive 47 percent.
47. 94 percent of all blood donors are registered voters.
48. 60 percent of the US population is eligible to donate – only 5 percent do on a yearly basis.
49. 17 percent of non-donors cite “never thought about it” as the main reason for not giving, while 15 percent say they’re “too busy.” The #1 reason donors say they give is because they “want to help others.”
50. After donating blood, you replace these red blood cells within 3 to 4 weeks. It takes eight weeks to restore the iron lost after donating.
51. Granulocytes, a type of white blood cell, roll along blood vessel walls in search of bacteria to eat.
52. White cells are the body's primary defense against infection.
53. There is no substitute for human blood.
54. It’s about Life.
55. Since a pint is pound, you lose a pound every time you donate blood.
56. Anyone who is in good health, is at least 17 years old, and weighs at least 110 pounds may donate blood every 56 days.
PS. BIG NEWS ALERT!!! Although the celebration isn’t until next weekend, tomorrow is actually Kendrie’s 6th Birthday! Please leave her a note in the guestbook, wishing her a happy birthday. I’ll be sure to update with party details and pictures next weekend. Then, be sure to go to Clare’s site and leave a kind note for her as well. Thanks!
Saturday, August 27, 2005
ONE THING LEADS TO ANOTHER, AT LEAST IN AN UN-ORGANIZED MENTAL STATE LIKE MINE!
109 Days to Go
There are many positive aspects to the long-term maintenance portion of Kendrie’s treatment plan. Fewer clinic appointments, fewer spinal taps, and fewer port accesses, to name a few. But the one teeny, tiny thing that makes LTM difficult is that often, there just isn’t much to talk about medically! So, to fill in the gaps for this journal, I often share with you the funny, charming, adorable things that my delightful children do and say on a daily basis that keep me entertained and amused.
(Hmmm. I'm thinking …. thinking ….. total silence....)
SO!!! Then, there are journal entries like this one, where I’ve searched high and low in our life for something interesting to share, and come up completely empty-handed. So, instead, I thought I’d take you on a little stream-of-consciousness tour through my disjointed, rambling, long-winded life; enhanced, of course, with pictures.
Speaking of pictures, first I’d like to bring your attention to the new picture of Kendrie at the top of the page. I took this photo earlier this week to show off her new hairdo courtesy of Blaine and his magic clippers. It really looks SO much better; I can’t even tell you how glad I am she agreed to let him do it. What you might not have realized until you looked at this picture is that Kendrie wears glasses. Not due to poor eyesight, but because she found this cheap pair of costume glasses at the bottom of her toy bin and announced that she needs them to see. And so now she wears them all the time. It’s hysterical, really, because her new favorite past-time is “accidentally” knocking them off her own head and then crawling around with her eyes closed, patting the ground all around her, pretending she can’t see well enough to find her glasses. I made the mistake of laughing the first time she did this, and now, of course, she does it all the time. So really, it probably won’t be so funny in another few days.
But glasses aside, the picture of Kendrie with her fresh haircut leads me to show you a recent picture of Kellen. Blaine buzzes the bottom of his bowl cut every week or two, and has been pestering me for years to get rid of the bowl cut and give him a normal little boy cut. What I have tried, unsuccessfully, to explain to Blaine is that women (like me) pay great sums of money to get our hair as straight, fine, and naturally highlighted as Kellen’s is, and no WAY am I cutting it. I’ve been defending my position for years …. But that is all about to change. Since birth, Kellen has been a hair twirler when he is tired, or (used to) when he would drink a bottle or sippy cup. All of a sudden, about a month ago, he started twirling the top of his hair all the freakin’ time. At home, at school, at play, even in his sleep.
His teacher pulled me aside the first week of school to ask me if she made him nervous, or if there were any problems at home, because he twirls his hair so much! He has no problem or pride whatsoever about walking around with the aftereffects, looking like a hurricane has blown through his head, or that small animals must be nesting up there:
But it is making me crazy and if he doesn’t watch out, I’m going to have it cut after all. Of course, I have a girlfriend whose little boy was a hair twirler and when she cut *his* off, he started twirling another piece of his anatomy that was much less socially acceptable, so maybe I should allow Kellen's hair twirling and be done with it. What do you think?
But these pictures of Kellen and his hair “problem” leads me to the following picture of Brayden, no stranger to “The Challenge of the Tresses” herself. Her hair is not straight enough to be styled in any way, but not curly enough to be considered “naturally curly”. She desperately wants to grow it long, but is stuck with these waves that, I'll admit, look pretty cute when she’s hanging out in a rain forest and can take advantage of the natural humidity, but just stringy the rest of the time. So maybe I should buzz cut all three of them and be done with it.
But that picture of Brayden I didn’t take to show off her hair …. I took it to show off the look on her face, which was very grumpy, and completely justified, after she had four baby teeth extracted this week. The look came the next morning at the breakfast table, when she discovered her favorite granola bar was a tad too crunchy for someone with four gaping, fresh wounds in their mouth. Thank goodness for children's Tylenol!
And that leads me to tell you how she asked me to pack her a “soft” lunch for school that day, and I agreed, even though my kids normally eat the school lunch. Kendrie, of course, wanted me to pack a lunch for her too, although Kellen said no. (Why is it such a treat for kids who don’t usually take their lunch to get to do it? Probably the same reason my “car rider” kids are always begging me to let them ride the bus!) I put a mini bag of m&ms in each of their lunchboxes and winked, telling them not to tell Kellen or he would change his mind and want to take his lunch, too. Kendrie, being the little **helper** that she always is, said out loud, “Don’t worry Kellen, we don’t have m&ms in our lunchboxes or anything like that!”
And that story leads me to share with you further proof that my kids have no rational behavior. I took them to the grocery story on Friday and promised them if they acted nicely we could go to the toy aisle and pick out something “small”. Kellen wanted a Match Box Car; Brayden selected a small diary; Kendrie, naturally, gravitated to the most obnoxious thing there: a Whoopee Cushion. Not only did she insist on buying it, but she carried it around the store, squeezing it at every opportunity and laughing hysterically. The fun and frivolity continued until she got home and got a little too enthusiastic with it, and popped it. Oh, dear Lord, the tears and wailing that ensued were unbelievable. So then, like it’s not obnoxious enough …. like finding such ultimate, pure joy in a whoopee cushion isn’t distasteful to begin with ---- BLAINE FIXED THE THING WITH DUCT TAPE AND KENDRIE DECLARED IT WAS BETTER THAN EVER! Seriously, could we be any more white trash? A duct-taped whoopee cushion???? She is sleeping with it as we speak, and happy as a clam.
And that leads me to tell you about another moment of happiness that came this week thanks to an inanimate object, this one in the mail, and much more pleasing to the sensibilities. Once again, SuperSibs! surprised both Kellen and Brayden with new t-shirts, much to their delight and Kendrie’s chagrin. They are such a marvelous organization and I strongly encourage anyone who has a child with cancer to submit their siblings’ names to SuperSibs! and let them support your children the same, wonderful way they have supported Brayden and Kellen these past two years.
And talking about one wonderful organization leads me to mention another: The American Red Cross. As you know, next weekend is Labor Day, the last big holiday of summer. Labor Day means cookouts, get togethers, travel, car wrecks, and accidents. Which equals a big strain placed on an already strained blood supply. I received the following e-mail from the Red Cross this week and would encourage everyone to make a donation this week, in preparation for the holiday, or donate between Sept 1st and the 9th to take advantage of the following offer:
“As the prices of gas soar, you’ve probably experienced a dent in the wallet from summer travel. Delta Air Lines and the American Red Cross are thinking ahead, and want you to have the chance to fly your family home for the holidays. From September 1st to September 9th all presenting blood and platelet donors will receive a free gift and be able to enter a drawing to win Four Roundtrip Delta Air Lines tickets! Sign up to donate today, or if you have donated blood in the last 56 days, please ask a friend or family member to give in your place. Thank you for saving lives!
For locations and hours of an American Red Cross drive or donor center convenient to you, call 1-800-GIVE-LIFE or visit us on the web at www.givebloodredcross.org or contact your company’s blood drive coordinator. Blood donors may give every 56 days and platelet donors may give every 14 days. To donate you must be at least 17 years of age and weigh at least 110 pounds.”
And that leads me to think about the blood and platelet donors who, without a doubt, saved Kendrie’s life when she was first diagnosed with leukemia and needed numerous transfusions at the beginning. She’s had transfusions on three separate occasions since then as well. Please know that no matter where you live, your single donation can save up to three lives. Which leads me to show you just how precious the life you save might be:
Kendrie, “reading” to her stuffed animals. (Notice the glasses, which she swears help her to see the book better?!)
Thank you to all of you for checking in on our family and leaving us notes of encouragement in the guestbook. We really get a kick out of hearing from you, and hope you are all having a great weekend!
Love,
Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Um, probably the Bactrim medication I have to take (four times!) on Saturdays and Sundays. My mom even pays extra for the Pharmacy Man to flavor it with cherry, but I think the man must sneak in “Yucky Flavor” when we’re not looking --- it's really craptacular!
BEST PART ABOUT HAVING CANCER TODAY:
Can you believe my mom took me and my brother and sister swimming for FOUR HOURS today and didn’t put sunscreen on my head??? Thank goodness I have duckling fuzz, is all I can say, because my cheeks are downright pink, but my head doesn’t seem to be burned. Yeah, duck fuzz!
There are many positive aspects to the long-term maintenance portion of Kendrie’s treatment plan. Fewer clinic appointments, fewer spinal taps, and fewer port accesses, to name a few. But the one teeny, tiny thing that makes LTM difficult is that often, there just isn’t much to talk about medically! So, to fill in the gaps for this journal, I often share with you the funny, charming, adorable things that my delightful children do and say on a daily basis that keep me entertained and amused.
(Hmmm. I'm thinking …. thinking ….. total silence....)
SO!!! Then, there are journal entries like this one, where I’ve searched high and low in our life for something interesting to share, and come up completely empty-handed. So, instead, I thought I’d take you on a little stream-of-consciousness tour through my disjointed, rambling, long-winded life; enhanced, of course, with pictures.
Speaking of pictures, first I’d like to bring your attention to the new picture of Kendrie at the top of the page. I took this photo earlier this week to show off her new hairdo courtesy of Blaine and his magic clippers. It really looks SO much better; I can’t even tell you how glad I am she agreed to let him do it. What you might not have realized until you looked at this picture is that Kendrie wears glasses. Not due to poor eyesight, but because she found this cheap pair of costume glasses at the bottom of her toy bin and announced that she needs them to see. And so now she wears them all the time. It’s hysterical, really, because her new favorite past-time is “accidentally” knocking them off her own head and then crawling around with her eyes closed, patting the ground all around her, pretending she can’t see well enough to find her glasses. I made the mistake of laughing the first time she did this, and now, of course, she does it all the time. So really, it probably won’t be so funny in another few days.
But glasses aside, the picture of Kendrie with her fresh haircut leads me to show you a recent picture of Kellen. Blaine buzzes the bottom of his bowl cut every week or two, and has been pestering me for years to get rid of the bowl cut and give him a normal little boy cut. What I have tried, unsuccessfully, to explain to Blaine is that women (like me) pay great sums of money to get our hair as straight, fine, and naturally highlighted as Kellen’s is, and no WAY am I cutting it. I’ve been defending my position for years …. But that is all about to change. Since birth, Kellen has been a hair twirler when he is tired, or (used to) when he would drink a bottle or sippy cup. All of a sudden, about a month ago, he started twirling the top of his hair all the freakin’ time. At home, at school, at play, even in his sleep.
His teacher pulled me aside the first week of school to ask me if she made him nervous, or if there were any problems at home, because he twirls his hair so much! He has no problem or pride whatsoever about walking around with the aftereffects, looking like a hurricane has blown through his head, or that small animals must be nesting up there:
But it is making me crazy and if he doesn’t watch out, I’m going to have it cut after all. Of course, I have a girlfriend whose little boy was a hair twirler and when she cut *his* off, he started twirling another piece of his anatomy that was much less socially acceptable, so maybe I should allow Kellen's hair twirling and be done with it. What do you think?
But these pictures of Kellen and his hair “problem” leads me to the following picture of Brayden, no stranger to “The Challenge of the Tresses” herself. Her hair is not straight enough to be styled in any way, but not curly enough to be considered “naturally curly”. She desperately wants to grow it long, but is stuck with these waves that, I'll admit, look pretty cute when she’s hanging out in a rain forest and can take advantage of the natural humidity, but just stringy the rest of the time. So maybe I should buzz cut all three of them and be done with it.
But that picture of Brayden I didn’t take to show off her hair …. I took it to show off the look on her face, which was very grumpy, and completely justified, after she had four baby teeth extracted this week. The look came the next morning at the breakfast table, when she discovered her favorite granola bar was a tad too crunchy for someone with four gaping, fresh wounds in their mouth. Thank goodness for children's Tylenol!
And that leads me to tell you how she asked me to pack her a “soft” lunch for school that day, and I agreed, even though my kids normally eat the school lunch. Kendrie, of course, wanted me to pack a lunch for her too, although Kellen said no. (Why is it such a treat for kids who don’t usually take their lunch to get to do it? Probably the same reason my “car rider” kids are always begging me to let them ride the bus!) I put a mini bag of m&ms in each of their lunchboxes and winked, telling them not to tell Kellen or he would change his mind and want to take his lunch, too. Kendrie, being the little **helper** that she always is, said out loud, “Don’t worry Kellen, we don’t have m&ms in our lunchboxes or anything like that!”
And that story leads me to share with you further proof that my kids have no rational behavior. I took them to the grocery story on Friday and promised them if they acted nicely we could go to the toy aisle and pick out something “small”. Kellen wanted a Match Box Car; Brayden selected a small diary; Kendrie, naturally, gravitated to the most obnoxious thing there: a Whoopee Cushion. Not only did she insist on buying it, but she carried it around the store, squeezing it at every opportunity and laughing hysterically. The fun and frivolity continued until she got home and got a little too enthusiastic with it, and popped it. Oh, dear Lord, the tears and wailing that ensued were unbelievable. So then, like it’s not obnoxious enough …. like finding such ultimate, pure joy in a whoopee cushion isn’t distasteful to begin with ---- BLAINE FIXED THE THING WITH DUCT TAPE AND KENDRIE DECLARED IT WAS BETTER THAN EVER! Seriously, could we be any more white trash? A duct-taped whoopee cushion???? She is sleeping with it as we speak, and happy as a clam.
And that leads me to tell you about another moment of happiness that came this week thanks to an inanimate object, this one in the mail, and much more pleasing to the sensibilities. Once again, SuperSibs! surprised both Kellen and Brayden with new t-shirts, much to their delight and Kendrie’s chagrin. They are such a marvelous organization and I strongly encourage anyone who has a child with cancer to submit their siblings’ names to SuperSibs! and let them support your children the same, wonderful way they have supported Brayden and Kellen these past two years.
And talking about one wonderful organization leads me to mention another: The American Red Cross. As you know, next weekend is Labor Day, the last big holiday of summer. Labor Day means cookouts, get togethers, travel, car wrecks, and accidents. Which equals a big strain placed on an already strained blood supply. I received the following e-mail from the Red Cross this week and would encourage everyone to make a donation this week, in preparation for the holiday, or donate between Sept 1st and the 9th to take advantage of the following offer:
“As the prices of gas soar, you’ve probably experienced a dent in the wallet from summer travel. Delta Air Lines and the American Red Cross are thinking ahead, and want you to have the chance to fly your family home for the holidays. From September 1st to September 9th all presenting blood and platelet donors will receive a free gift and be able to enter a drawing to win Four Roundtrip Delta Air Lines tickets! Sign up to donate today, or if you have donated blood in the last 56 days, please ask a friend or family member to give in your place. Thank you for saving lives!
For locations and hours of an American Red Cross drive or donor center convenient to you, call 1-800-GIVE-LIFE or visit us on the web at www.givebloodredcross.org or contact your company’s blood drive coordinator. Blood donors may give every 56 days and platelet donors may give every 14 days. To donate you must be at least 17 years of age and weigh at least 110 pounds.”
And that leads me to think about the blood and platelet donors who, without a doubt, saved Kendrie’s life when she was first diagnosed with leukemia and needed numerous transfusions at the beginning. She’s had transfusions on three separate occasions since then as well. Please know that no matter where you live, your single donation can save up to three lives. Which leads me to show you just how precious the life you save might be:
Kendrie, “reading” to her stuffed animals. (Notice the glasses, which she swears help her to see the book better?!)
Thank you to all of you for checking in on our family and leaving us notes of encouragement in the guestbook. We really get a kick out of hearing from you, and hope you are all having a great weekend!
Love,
Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Um, probably the Bactrim medication I have to take (four times!) on Saturdays and Sundays. My mom even pays extra for the Pharmacy Man to flavor it with cherry, but I think the man must sneak in “Yucky Flavor” when we’re not looking --- it's really craptacular!
BEST PART ABOUT HAVING CANCER TODAY:
Can you believe my mom took me and my brother and sister swimming for FOUR HOURS today and didn’t put sunscreen on my head??? Thank goodness I have duckling fuzz, is all I can say, because my cheeks are downright pink, but my head doesn’t seem to be burned. Yeah, duck fuzz!
Tuesday, August 23, 2005
IS THERE SUCH THING AS A MEDICATION REFILL TREADMILL? BECAUSE I THINK I’M ON IT AND I WANT TO GET OFF!
113 Days to Go
Whether or not your child gets cancer? Random. Whether or not your child handles chemo well? Random. Whether or not your child relapses? Random. So when you find something --- anything --- over which you have a smidgeon of control, you manage it and feel smug about it. Since Kendrie was diagnosed and started chemotherapy, some 679-odd days ago, Blaine and I have taken total and complete control of her medication. And, if I do say so myself, we’ve done it well. She had never missed a day or a dose of meds; she had never missed a doctor’s appointment; and I can count the number of times on one hand that we’ve fudged the “no food or dairy two hours before bedtime” rule since entering long term maintenance. For anal control freaks like us, it was a pretty good record.
Then, imagine my dismay when I went out of town last weekend, only to receive a call from Blaine on Saturday morning, while he was standing in the Eckerd’s pharmacy waiting area, to tell me that not only had she run out of .5 mg dexamethazone (steroid) ….. but the prescription had also expired the day before …. AND, to add insult to injury, Eckerd’s couldn’t even float us the four pills we needed until Monday because they were completely out.
You have to understand that Blaine and I have a very clear delineation of duties when it comes to chemo meds. He holds her still; I give her shots. He marks the medication chart with a highlighter each evening; I sneakily check over his shoulder to make sure he’s doing it right. He gives her the oral meds; I am responsible for making sure all prescriptions are refilled in a timely manner. So the sudden, unexpected Eckerd’s-steroid dilemma was all me, baby. Ugh. Call the engraver; the Mother-of-the-Year Award has slipped through my fingers again. In all seriousness, I was pretty upset about it. What kind of loser doesn’t check to make sure her daughter has enough chemo before going out of town???
Here’s where the treadmill started: Her methotrexate is on a 30-day auto-refill cycle and we get double what we need each month. Despite telling Eckerd’s we have enough methotrexate pills to take care of *several* chemo kids, for about twenty years, they keep filling it each month. Fine. Whatever. I had double-checked her Claritin, which was fine, and already refilled her Singulair that week. She had plenty of her other steroid, the 4 mg. I noticed before I went out of town that she was running low on Zofran, but only one pharmacy, way across town, carries the dissolvables, so I decided to fill that one later, since that same pharmacy across town is the only one that will flavor her liquid Bactrim and she still had two weeks worth of that.
So, back to the steroid delimma. Monday morning first thing I called her nurse and explained what I had done wrong, fully expecting her to report me to Child Services for neglect. I had already done the math --- Kendrie gets a total of 5 mg of steroids each day, for five days each month, for 17 months of long-term maintenance. So, thanks to my carelessness, Kendrie had missed .04 percent of her total steroids. Seeing how small the number was made me feel slightly better about my total lack of parenting ability …. The fact her nurse told me to “Get a grip, you dork” made me feel even better. (Footnote for chemo parents: .04 percent is NOT enough to negate the ‘roid rage of the month, just fyi.)
After calling the doctor and the pharmacy and getting the prescription refilled, and deciding that maybe, just maybe, I’m not the worst parent on the planet ….. after all, there are so many different meds, given at different amounts at different times on different days in different increments, really, it’s probably ok to cut myself some slack, right? Then, Blaine climbed into bed last night and the last thing he said to me before falling asleep was, “Kendrie’s almost out of 6mp …. And Eckerds called with another methotrexate refill …. Can you take care of both those things tomorrow?”
Ah, it’s good to have a purpose in life and be needed again . But I'll admit, I’m excited for this treadmill to stop. Counting down, less than four months to go!
Once again, thanks to all of you for the kind notes about Kendrie’s school, hair and clothes. I was thrilled tonight when she agreed to let Blaine buzz the ring of fuzzy hair around her ears and neck off. Now, she’s got the little duckling fuzz all over and it looks SO much better. In fact, I find myself kissing the top of her head obsessively, just to feel how soft it is, and some total stranger at school today, a fellow student that Kendrie had never seen before, came up to her and started rubbing the top of her head. Maybe he had a math test and needed luck, who knows?
But I was inwardly congratulating myself on raising a child who has the ability to overcome her own (and other children’s) perceptions about how a little girl perhaps *should* look …. A child with the self-confidence to be herself …. The poise and assurance that how she looks is both beautiful, and no-one else’s concern ….. So imagine my surprise when she told me tonight that she couldn’t wear her green t-shirt tomorrow because “Well, you know, Nicholas really likes me to wear shirts with pictures on them.”
Great. Now she’s taking wardrobe instructions from her 5-yr old boyfriend? Maybe she’s not quite as poised as I thought she was.
Thanks for checking in …. In the meantime, looks like I’m off to Eckerd’s.
PS. One of the fun things I got to do this weekend, besides place my daughter’s health in jeopardy with my inattention, was meet for the first time some fellow ALL-list members, Donna, mom to Molly and Billy, and also Michele, mom to Brendan. If you had told me a few years ago I’d be not only meeting people I “know” only through the internet, but having a total blast doing it, I would have said you were crazy. But it’s amazing how much you can have in common with a relative stranger when you’ve faced some of the same challenges. So, Donna and Michele, I had a marvelous time hanging out with you guys and want to say Thanks for welcoming me into your lives!
Take care,
Kristie
*****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My dad kept coming after me, prompted by my mom, with his clippers. Since Kellen was getting his buzzed, I decided to let Dad do mine, too. What is this world coming to when a beauty like myself gets her hair done, standing in the garage with a towel draped over her shoulders, by her dad???
BEST PART ABOUT HAVING CANCER TODAY: At least I won’t have to listen to my mom’s not-so-subtle hints about my last little ring of hair anymore.
Whether or not your child gets cancer? Random. Whether or not your child handles chemo well? Random. Whether or not your child relapses? Random. So when you find something --- anything --- over which you have a smidgeon of control, you manage it and feel smug about it. Since Kendrie was diagnosed and started chemotherapy, some 679-odd days ago, Blaine and I have taken total and complete control of her medication. And, if I do say so myself, we’ve done it well. She had never missed a day or a dose of meds; she had never missed a doctor’s appointment; and I can count the number of times on one hand that we’ve fudged the “no food or dairy two hours before bedtime” rule since entering long term maintenance. For anal control freaks like us, it was a pretty good record.
Then, imagine my dismay when I went out of town last weekend, only to receive a call from Blaine on Saturday morning, while he was standing in the Eckerd’s pharmacy waiting area, to tell me that not only had she run out of .5 mg dexamethazone (steroid) ….. but the prescription had also expired the day before …. AND, to add insult to injury, Eckerd’s couldn’t even float us the four pills we needed until Monday because they were completely out.
You have to understand that Blaine and I have a very clear delineation of duties when it comes to chemo meds. He holds her still; I give her shots. He marks the medication chart with a highlighter each evening; I sneakily check over his shoulder to make sure he’s doing it right. He gives her the oral meds; I am responsible for making sure all prescriptions are refilled in a timely manner. So the sudden, unexpected Eckerd’s-steroid dilemma was all me, baby. Ugh. Call the engraver; the Mother-of-the-Year Award has slipped through my fingers again. In all seriousness, I was pretty upset about it. What kind of loser doesn’t check to make sure her daughter has enough chemo before going out of town???
Here’s where the treadmill started: Her methotrexate is on a 30-day auto-refill cycle and we get double what we need each month. Despite telling Eckerd’s we have enough methotrexate pills to take care of *several* chemo kids, for about twenty years, they keep filling it each month. Fine. Whatever. I had double-checked her Claritin, which was fine, and already refilled her Singulair that week. She had plenty of her other steroid, the 4 mg. I noticed before I went out of town that she was running low on Zofran, but only one pharmacy, way across town, carries the dissolvables, so I decided to fill that one later, since that same pharmacy across town is the only one that will flavor her liquid Bactrim and she still had two weeks worth of that.
So, back to the steroid delimma. Monday morning first thing I called her nurse and explained what I had done wrong, fully expecting her to report me to Child Services for neglect. I had already done the math --- Kendrie gets a total of 5 mg of steroids each day, for five days each month, for 17 months of long-term maintenance. So, thanks to my carelessness, Kendrie had missed .04 percent of her total steroids. Seeing how small the number was made me feel slightly better about my total lack of parenting ability …. The fact her nurse told me to “Get a grip, you dork” made me feel even better. (Footnote for chemo parents: .04 percent is NOT enough to negate the ‘roid rage of the month, just fyi.)
After calling the doctor and the pharmacy and getting the prescription refilled, and deciding that maybe, just maybe, I’m not the worst parent on the planet ….. after all, there are so many different meds, given at different amounts at different times on different days in different increments, really, it’s probably ok to cut myself some slack, right? Then, Blaine climbed into bed last night and the last thing he said to me before falling asleep was, “Kendrie’s almost out of 6mp …. And Eckerds called with another methotrexate refill …. Can you take care of both those things tomorrow?”
Ah, it’s good to have a purpose in life and be needed again . But I'll admit, I’m excited for this treadmill to stop. Counting down, less than four months to go!
Once again, thanks to all of you for the kind notes about Kendrie’s school, hair and clothes. I was thrilled tonight when she agreed to let Blaine buzz the ring of fuzzy hair around her ears and neck off. Now, she’s got the little duckling fuzz all over and it looks SO much better. In fact, I find myself kissing the top of her head obsessively, just to feel how soft it is, and some total stranger at school today, a fellow student that Kendrie had never seen before, came up to her and started rubbing the top of her head. Maybe he had a math test and needed luck, who knows?
But I was inwardly congratulating myself on raising a child who has the ability to overcome her own (and other children’s) perceptions about how a little girl perhaps *should* look …. A child with the self-confidence to be herself …. The poise and assurance that how she looks is both beautiful, and no-one else’s concern ….. So imagine my surprise when she told me tonight that she couldn’t wear her green t-shirt tomorrow because “Well, you know, Nicholas really likes me to wear shirts with pictures on them.”
Great. Now she’s taking wardrobe instructions from her 5-yr old boyfriend? Maybe she’s not quite as poised as I thought she was.
Thanks for checking in …. In the meantime, looks like I’m off to Eckerd’s.
PS. One of the fun things I got to do this weekend, besides place my daughter’s health in jeopardy with my inattention, was meet for the first time some fellow ALL-list members, Donna, mom to Molly and Billy, and also Michele, mom to Brendan. If you had told me a few years ago I’d be not only meeting people I “know” only through the internet, but having a total blast doing it, I would have said you were crazy. But it’s amazing how much you can have in common with a relative stranger when you’ve faced some of the same challenges. So, Donna and Michele, I had a marvelous time hanging out with you guys and want to say Thanks for welcoming me into your lives!
Take care,
Kristie
*****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My dad kept coming after me, prompted by my mom, with his clippers. Since Kellen was getting his buzzed, I decided to let Dad do mine, too. What is this world coming to when a beauty like myself gets her hair done, standing in the garage with a towel draped over her shoulders, by her dad???
BEST PART ABOUT HAVING CANCER TODAY: At least I won’t have to listen to my mom’s not-so-subtle hints about my last little ring of hair anymore.
Thursday, August 18, 2005
**WHAT** REPUTATION ???
(118 Days to Go)
I want to write and say thanks from the bottom of my heart to all of you who signed the guestbook and sent private e-mails offering words of encouragement to Kendrie as she headed back to school on Monday and into what, in her 5-yr old mind, was a social minefield. It truly encouraged us to read so many notes of support for Kendrie no matter what her choice of “looks” might be. The suggestions were all wonderful and several we’ve taken to heart. … and Noah’s mom Lori’s suggestion that Kendrie write “I’m a Girl” on her behind and moon anyone in the bathroom who suggests otherwise was probably the best laugh I had all week. Thanks, Lori!
We did have Child Life come to her school and make a presentation last year and it went extremely well, so it’s something we’re keeping in mind again. Our situation this year is that her elementary school went from 40 Pre-K students, all of whom knew Kendrie and were protective and kind, to 140 Kindergarteners, most of whom have never met her and wonder why a bald-headed kid wearing Spiderman shirts and hiking boots is hanging out in the girls’ restroom. I’d wonder too, if it were me!
Monday morning was bad; Tuesday morning was worse. I spoke with her teachers on Monday and they assured me they would be talking to the other kindergarten teachers. So on Tuesday, I decided to present Kendrie with some options:
Option 1: Start dressing in clothes that are a little more “girly”. That suggestion was greeted with about as much enthusiasm as Bill Clinton at the National Republican Convention. Or the National Organization for Women. Or Monica Lewinsky' family reunion.
Option 2: Wear one of the hats she has in her drawer. She responded that she wasn’t allowed to wear hats to school. I reminded her that she wore a hat the first few months of school last year, and she informed me I was crazy … she did not.
Option 3: How about piercing your ears? I didn’t really think she’d go for this, but someone suggested it in the guestbook so I thought I would throw it out there. Needless to say, the reply was not “No”, but “Hell, No!!”, and it was worth it just to see the look of horror on her face.
So by then, it pretty much boiled down to a) make her unhappy by forcing her to dress in clothes she doesn’t want to wear ….. or b) tell her to toughen up and take responsibility for her choices. If she chooses to wear “boy clothes” then that’s fine …. but she’s not to get her feelings hurt when people think she’s a boy. The only thing about this that rubs me wrong is the whole “It’s not fair” issue ---- if she had a braid halfway down her back she could wear whatever she wanted and no-one would think twice. But combine the camouflage shorts set with her little bald head and voila! ---it’s “Hello, Sonny” and “Hey, little buddy” as far as you can hear.
I don’t think the teasing episodes are happening often. It's more that they happened previously and now Kendrie is afraid of a repeat incident. Sort of “They might make fun of me” as opposed to “They are making fun of me”. I know it happened at least three times, so I’m taking her feelings seriously, but the flip side is that if her head spins around any time I suggest a pink shirt, then there’s only so much I can do for her.
She wore her Camp Sunshine t-shirt on Tuesday and her Lighthouse Retreat t-shirt on Wednesday and told me, “I’ve been wearing cancer t-shirts so the kids would know what is wrong with me but none of them understand!” I didn’t have the heart to explain to her that the vast majority of kindergarteners can’t read yet and have no idea what her shirts say.
So, this morning, as I prepared to spend another fifteen minutes telling her why I refuse to buy her any new Kim Possible tennis shoes, which she somehow thinks will make her appear more feminine than her Dora shoes (???) she suddenly popped up in this camo outfit she stole (er, borrowed) from her friend Kody. To be honest, I was happy to see her in this. She loves it; it’s practically her favorite outfit. I’m choosing to take it as a sign that she’s getting more comfortable in her own skin, and phooey on any of the other kids who don’t get it. And if they continue to not get it, I’m grabbing a marker and taking Lori’s advice after all. :)
Hope you all have a great weekend,
Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My mom came and had lunch with me today and right there at the table another mom asked “How old is your son?” Aaarghhh! My mom just gave me her special smile, but I can’t wait for this hair to grow back in!
BEST PART ABOUT HAVING CANCER TODAY: I finished my steroids for this month, yippee!!! (I think my parents are more excited about that than I am!)
I want to write and say thanks from the bottom of my heart to all of you who signed the guestbook and sent private e-mails offering words of encouragement to Kendrie as she headed back to school on Monday and into what, in her 5-yr old mind, was a social minefield. It truly encouraged us to read so many notes of support for Kendrie no matter what her choice of “looks” might be. The suggestions were all wonderful and several we’ve taken to heart. … and Noah’s mom Lori’s suggestion that Kendrie write “I’m a Girl” on her behind and moon anyone in the bathroom who suggests otherwise was probably the best laugh I had all week. Thanks, Lori!
We did have Child Life come to her school and make a presentation last year and it went extremely well, so it’s something we’re keeping in mind again. Our situation this year is that her elementary school went from 40 Pre-K students, all of whom knew Kendrie and were protective and kind, to 140 Kindergarteners, most of whom have never met her and wonder why a bald-headed kid wearing Spiderman shirts and hiking boots is hanging out in the girls’ restroom. I’d wonder too, if it were me!
Monday morning was bad; Tuesday morning was worse. I spoke with her teachers on Monday and they assured me they would be talking to the other kindergarten teachers. So on Tuesday, I decided to present Kendrie with some options:
Option 1: Start dressing in clothes that are a little more “girly”. That suggestion was greeted with about as much enthusiasm as Bill Clinton at the National Republican Convention. Or the National Organization for Women. Or Monica Lewinsky' family reunion.
Option 2: Wear one of the hats she has in her drawer. She responded that she wasn’t allowed to wear hats to school. I reminded her that she wore a hat the first few months of school last year, and she informed me I was crazy … she did not.
Option 3: How about piercing your ears? I didn’t really think she’d go for this, but someone suggested it in the guestbook so I thought I would throw it out there. Needless to say, the reply was not “No”, but “Hell, No!!”, and it was worth it just to see the look of horror on her face.
So by then, it pretty much boiled down to a) make her unhappy by forcing her to dress in clothes she doesn’t want to wear ….. or b) tell her to toughen up and take responsibility for her choices. If she chooses to wear “boy clothes” then that’s fine …. but she’s not to get her feelings hurt when people think she’s a boy. The only thing about this that rubs me wrong is the whole “It’s not fair” issue ---- if she had a braid halfway down her back she could wear whatever she wanted and no-one would think twice. But combine the camouflage shorts set with her little bald head and voila! ---it’s “Hello, Sonny” and “Hey, little buddy” as far as you can hear.
I don’t think the teasing episodes are happening often. It's more that they happened previously and now Kendrie is afraid of a repeat incident. Sort of “They might make fun of me” as opposed to “They are making fun of me”. I know it happened at least three times, so I’m taking her feelings seriously, but the flip side is that if her head spins around any time I suggest a pink shirt, then there’s only so much I can do for her.
She wore her Camp Sunshine t-shirt on Tuesday and her Lighthouse Retreat t-shirt on Wednesday and told me, “I’ve been wearing cancer t-shirts so the kids would know what is wrong with me but none of them understand!” I didn’t have the heart to explain to her that the vast majority of kindergarteners can’t read yet and have no idea what her shirts say.
So, this morning, as I prepared to spend another fifteen minutes telling her why I refuse to buy her any new Kim Possible tennis shoes, which she somehow thinks will make her appear more feminine than her Dora shoes (???) she suddenly popped up in this camo outfit she stole (er, borrowed) from her friend Kody. To be honest, I was happy to see her in this. She loves it; it’s practically her favorite outfit. I’m choosing to take it as a sign that she’s getting more comfortable in her own skin, and phooey on any of the other kids who don’t get it. And if they continue to not get it, I’m grabbing a marker and taking Lori’s advice after all. :)
Hope you all have a great weekend,
Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My mom came and had lunch with me today and right there at the table another mom asked “How old is your son?” Aaarghhh! My mom just gave me her special smile, but I can’t wait for this hair to grow back in!
BEST PART ABOUT HAVING CANCER TODAY: I finished my steroids for this month, yippee!!! (I think my parents are more excited about that than I am!)
Sunday, August 14, 2005
“OH, YEAH, CANCER. AND OTHER RANDOM THINGS.”
122 Days to Go
First, let me apologize for the delay in updating. There might actually be a few people (Hi, Mom!) who noticed. Kendrie had an all-day clinic appointment on Friday, and I flew out of town to visit friends this weekend, so my computer time was severely hampered. And YES, for those of you with curious minds and/or good memories ….. just so you know …. I DID stick an extra pair of socks in my purse to put on my feet at airport security. In a few months, when I can shuck the sandals (which I hate) for boots (which are MUCH more my style) it won’t be an issue. But for now, standing around looking like the dorkiest tourist in the WORLD is worth not having those nasty airport-floor germs attaching themselves to my feet. Was I a failure in the fashion world? Yes … but at least I didn’t hyperventilate like I did the last time, so it was worth it.
Anyway, Kendrie has been coasting along at 65 percent chemo since she got out of the hospital in early July and doing great. I’d almost forgotten that most of you actually check in on this site to make sure she’s doing ok. Sometimes, I’m so self-absorbed, I think it’s nothing more than a place for me to vent about my crazy family. So, just to bring you up to speed, I thought I’d let you know about Kendrie’s clinic appointment and how things went.
Back when she was in the hospital in late June and her counts just wouldn’t recover, you might remember they gave her a transfusion of something called IVIG …. I’m sure there’s a fancy, medical, technological explanation of what it is and what it does, but I don’t know it. Basically, it’s like a booster shot for the immune system. As happens occasionally, Kendrie had a reaction to this transfusion ….. uncontrollable shaking, chills so bad her teeth were literally chattering, and feeling colder than she’s ever felt in her life. We threw so many warm blankets on her we almost couldn’t find her!
Well, IVIG is given every month for three months, meaning Kendrie was due for the next transfusion. Although her counts are back up to where they should be (which also means we’ve now upped one of her chemo meds, the 6MP, back to 100 percent) she has to receive all of the IVIG. Sort of a “better safe than sorry” measure, since her body, her immune system (and her parents!) are just beaten down after almost two years of chemo. I was a little worried about her having another reaction, so they pre-medicated her with Tylenol, IV Benadryl, and IV Decadron. It was like watching a drunk fall asleep at a party … I think she was still chewing a bite of corndog in her mouth when she passed out. But at least she didn’t have any reaction this time and the transfusion went as it should.
I knew that it would take several hours for the transfusion, in addition to the triage, port access, exam and chemo. It has been months since we’ve had a “long” clinic day and I was determined not to mess it up. I made a mental list of everything I wanted to take that day. Blanket and pillow for her, book for me, dvd player and dvds for her, a few books and toys for her, a bag with snacks, a bag with drinks, and the bag of Beanie Babies that my girlfriend Renee gave us to donate to the treasure chest (thanks, Renee!) Proudly, I can honestly say, I forgot nothing. Except to double check that the stroller was in the van. And of course Kendrie, upon arrival at the parking garage, realizes her arms are broken and she can’t carry a damn thing to help me, and apparently her legs are broken as well and she would prefer to be carried. Needless to say, it was a bit of a struggle to get it all in! But we managed and the visit went fine.
Her doctor thinks she *might* make it back up to 100 percent on all her chemo before the end of treatment, but there’s hardly any chance she’ll be back up at 125 percent of everything like she was. He explained that it’s better to keep her on a slightly lower dose, steadily, that her body can tolerate, as opposed to increasing her chemo too quickly and running the risk of her counts dropping again, and then having to stop chemo, then starting again, etc. With only four months of chemo to go, we’ve adopted the “slow and steady wins the race” motto.
Here are a few other things that caught my attention on Friday:
Driving to Atlanta, I had forewarned Kendrie it was going to be a long day due to the transfusion. She remembered the “medicine that made me feel so cold” from the hospital and was a little apprehensive about receiving it again. In an attempt to make her feel better, I was telling her she would get special medicine beforehand to make her feel relaxed, and keep that from happening again, and I told her, “You’ll probably even take a nap today …it will be perfectly fine; nice and calm and peaceful for you” and in the back of my mind I’m thinking, “I wish somebody would give me something so I could take a nap today -- she’s lucky!” and then I thought, “No, maybe I should think about what I’m saying. *Lucky* is probably not the best word.”
Kendrie knows how to work the buttons on the dvd player. Not just “play” and “stop” .. but all the fast forward, rewind, scene selection, and menu buttons. So now, not only do I get stuck watching (or when I’m driving .. listening) to the same movies over and over, now I am stuck listening to the same specific scene over and over. On Friday, she was obsessed with the scene in Homeward Bound II where Shadow and Sassy rescue the little boy Tucker and his kitten from the burning house. Over and over. And over. And all I could do was compare this to back when my kids were so little they didn’t know how to work the buttons on anything and the one time we tried to put a tv/vcr in the back, Kellen, age 2 or 3, shoved m&m’s in the player and broke the whole thing. Ah, the good ole’ days.
Our elementary school has a program for kids to stay after school, used primarily by working parents. Sort of like day-care at the school. The kids get snacks, do their homework, go to the computer lab, play outside, in the gym, etc. My kids have been bugging me for three years, telling me how much they want to go to the After School Program (ASP). So last week I decided ASP might not be such a bad thing to have as a back-up, in case Kendrie and I were stuck in Atlanta, or I had a late afternoon appointment, etc. I mean, I’m a stay-at-home mom because I choose to be, so it’s not like we have a great NEED for this, but it couldn’t hurt, right? So I signed the kids up and they went on Thursday. I dropped them off for school at 8:15 and didn’t pick them up until 5:45. As much as it pains me to admit this, I actually missed the little rugrats. So imagine how I felt when I picked them up and they all three came running to me, exclaiming about how much fun they had, and that was great, and could they do it again tomorrow? Then, Kellen offered up the final insult when he said, “Yeah, and if you’d get a job so we could ride the bus, that would make it perfect!!!”
Um, remind me again why I stay home???
Well, wish us luck at school tomorrow. Kendrie has apparently been having “issues” with a couple of little girls telling her to get out of the girls bathroom and a few boys in the lunchroom talking about her being bald. I have to be honest, considering the way she dresses, who could be surprised by the bathroom issue? And that’s pretty much what I told her. I didn’t give it too much thought, until tonight when she was laying out her clothes for tomorrow, and she told me she needed to wear some “girl clothes”. In her mind, of course, “girl clothes” constitutes changing her Yu-Gi-Oh tennis shoes for Dora tennis shoes …. But the simple fact that she’s doing it leads me to believe it must be bothering her. I’m going to try to convince her to wear a hat tomorrow as well. Not because *I* think she should, but because I think it might be less confusing for the young kids in the other kindergarten classes who don’t know her from last year. I plan on talking to the teacher about it as well tomorrow … Cancer worries me, side effects from chemo worry me, fear of the unknown worries me …. But NOTHING raises my hackles like the thought of somebody hurting my child’s feelings, even another child.
Hope you all had a great weekend,
Kristie
*************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I’m not real happy about going back to school tomorrow. In fact, I told my mom tonight that I didn’t want to go. I think she was pretty surprised by that, especially considering Nicholas is going to be there and everything. Hmmm, we’ll see what happens.
BEST PART ABOUT HAVING CANCER TODAY: Well, hopefully it’ll happen tomorrow, when those girls in the bathroom realize I’m a girl.
First, let me apologize for the delay in updating. There might actually be a few people (Hi, Mom!) who noticed. Kendrie had an all-day clinic appointment on Friday, and I flew out of town to visit friends this weekend, so my computer time was severely hampered. And YES, for those of you with curious minds and/or good memories ….. just so you know …. I DID stick an extra pair of socks in my purse to put on my feet at airport security. In a few months, when I can shuck the sandals (which I hate) for boots (which are MUCH more my style) it won’t be an issue. But for now, standing around looking like the dorkiest tourist in the WORLD is worth not having those nasty airport-floor germs attaching themselves to my feet. Was I a failure in the fashion world? Yes … but at least I didn’t hyperventilate like I did the last time, so it was worth it.
Anyway, Kendrie has been coasting along at 65 percent chemo since she got out of the hospital in early July and doing great. I’d almost forgotten that most of you actually check in on this site to make sure she’s doing ok. Sometimes, I’m so self-absorbed, I think it’s nothing more than a place for me to vent about my crazy family. So, just to bring you up to speed, I thought I’d let you know about Kendrie’s clinic appointment and how things went.
Back when she was in the hospital in late June and her counts just wouldn’t recover, you might remember they gave her a transfusion of something called IVIG …. I’m sure there’s a fancy, medical, technological explanation of what it is and what it does, but I don’t know it. Basically, it’s like a booster shot for the immune system. As happens occasionally, Kendrie had a reaction to this transfusion ….. uncontrollable shaking, chills so bad her teeth were literally chattering, and feeling colder than she’s ever felt in her life. We threw so many warm blankets on her we almost couldn’t find her!
Well, IVIG is given every month for three months, meaning Kendrie was due for the next transfusion. Although her counts are back up to where they should be (which also means we’ve now upped one of her chemo meds, the 6MP, back to 100 percent) she has to receive all of the IVIG. Sort of a “better safe than sorry” measure, since her body, her immune system (and her parents!) are just beaten down after almost two years of chemo. I was a little worried about her having another reaction, so they pre-medicated her with Tylenol, IV Benadryl, and IV Decadron. It was like watching a drunk fall asleep at a party … I think she was still chewing a bite of corndog in her mouth when she passed out. But at least she didn’t have any reaction this time and the transfusion went as it should.
I knew that it would take several hours for the transfusion, in addition to the triage, port access, exam and chemo. It has been months since we’ve had a “long” clinic day and I was determined not to mess it up. I made a mental list of everything I wanted to take that day. Blanket and pillow for her, book for me, dvd player and dvds for her, a few books and toys for her, a bag with snacks, a bag with drinks, and the bag of Beanie Babies that my girlfriend Renee gave us to donate to the treasure chest (thanks, Renee!) Proudly, I can honestly say, I forgot nothing. Except to double check that the stroller was in the van. And of course Kendrie, upon arrival at the parking garage, realizes her arms are broken and she can’t carry a damn thing to help me, and apparently her legs are broken as well and she would prefer to be carried. Needless to say, it was a bit of a struggle to get it all in! But we managed and the visit went fine.
Her doctor thinks she *might* make it back up to 100 percent on all her chemo before the end of treatment, but there’s hardly any chance she’ll be back up at 125 percent of everything like she was. He explained that it’s better to keep her on a slightly lower dose, steadily, that her body can tolerate, as opposed to increasing her chemo too quickly and running the risk of her counts dropping again, and then having to stop chemo, then starting again, etc. With only four months of chemo to go, we’ve adopted the “slow and steady wins the race” motto.
Here are a few other things that caught my attention on Friday:
Driving to Atlanta, I had forewarned Kendrie it was going to be a long day due to the transfusion. She remembered the “medicine that made me feel so cold” from the hospital and was a little apprehensive about receiving it again. In an attempt to make her feel better, I was telling her she would get special medicine beforehand to make her feel relaxed, and keep that from happening again, and I told her, “You’ll probably even take a nap today …it will be perfectly fine; nice and calm and peaceful for you” and in the back of my mind I’m thinking, “I wish somebody would give me something so I could take a nap today -- she’s lucky!” and then I thought, “No, maybe I should think about what I’m saying. *Lucky* is probably not the best word.”
Kendrie knows how to work the buttons on the dvd player. Not just “play” and “stop” .. but all the fast forward, rewind, scene selection, and menu buttons. So now, not only do I get stuck watching (or when I’m driving .. listening) to the same movies over and over, now I am stuck listening to the same specific scene over and over. On Friday, she was obsessed with the scene in Homeward Bound II where Shadow and Sassy rescue the little boy Tucker and his kitten from the burning house. Over and over. And over. And all I could do was compare this to back when my kids were so little they didn’t know how to work the buttons on anything and the one time we tried to put a tv/vcr in the back, Kellen, age 2 or 3, shoved m&m’s in the player and broke the whole thing. Ah, the good ole’ days.
Our elementary school has a program for kids to stay after school, used primarily by working parents. Sort of like day-care at the school. The kids get snacks, do their homework, go to the computer lab, play outside, in the gym, etc. My kids have been bugging me for three years, telling me how much they want to go to the After School Program (ASP). So last week I decided ASP might not be such a bad thing to have as a back-up, in case Kendrie and I were stuck in Atlanta, or I had a late afternoon appointment, etc. I mean, I’m a stay-at-home mom because I choose to be, so it’s not like we have a great NEED for this, but it couldn’t hurt, right? So I signed the kids up and they went on Thursday. I dropped them off for school at 8:15 and didn’t pick them up until 5:45. As much as it pains me to admit this, I actually missed the little rugrats. So imagine how I felt when I picked them up and they all three came running to me, exclaiming about how much fun they had, and that was great, and could they do it again tomorrow? Then, Kellen offered up the final insult when he said, “Yeah, and if you’d get a job so we could ride the bus, that would make it perfect!!!”
Um, remind me again why I stay home???
Well, wish us luck at school tomorrow. Kendrie has apparently been having “issues” with a couple of little girls telling her to get out of the girls bathroom and a few boys in the lunchroom talking about her being bald. I have to be honest, considering the way she dresses, who could be surprised by the bathroom issue? And that’s pretty much what I told her. I didn’t give it too much thought, until tonight when she was laying out her clothes for tomorrow, and she told me she needed to wear some “girl clothes”. In her mind, of course, “girl clothes” constitutes changing her Yu-Gi-Oh tennis shoes for Dora tennis shoes …. But the simple fact that she’s doing it leads me to believe it must be bothering her. I’m going to try to convince her to wear a hat tomorrow as well. Not because *I* think she should, but because I think it might be less confusing for the young kids in the other kindergarten classes who don’t know her from last year. I plan on talking to the teacher about it as well tomorrow … Cancer worries me, side effects from chemo worry me, fear of the unknown worries me …. But NOTHING raises my hackles like the thought of somebody hurting my child’s feelings, even another child.
Hope you all had a great weekend,
Kristie
*************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I’m not real happy about going back to school tomorrow. In fact, I told my mom tonight that I didn’t want to go. I think she was pretty surprised by that, especially considering Nicholas is going to be there and everything. Hmmm, we’ll see what happens.
BEST PART ABOUT HAVING CANCER TODAY: Well, hopefully it’ll happen tomorrow, when those girls in the bathroom realize I’m a girl.
Monday, August 08, 2005
MAYBE *TOMORROW* I’LL GET IT RIGHT
128 Days to Go
So, I feel the need to clarify the pained expression on Kendrie’s face in the first-day-of-school photos, and perhaps send out feelers to see if I have any competition for this year's “Worst Parent of the Year” award.
As you know, school here started last Friday. My kids actually like school and I was so excited to send them off the first day in real, Beaver-Cleaver-style.
The night before, I happily and lovingly set my alarm for 6am so I would have time to shower, dress, and make them their favorite breakfast, homemade chocolate chip pancakes, before school. I had images of my three beautiful children waking, pleasantly, with the sunlight streaming through their bedroom windows as birds chirped outside, then scampering happily into the kitchen for breakfast, our family holding hands and perhaps singing a verse or two of “Kumbaya” around the breakfast table. Then, they would all get dressed, brush hair and teeth without a single complaint, and we’d grab the backpacks and clamber in the van, laughing and joking our entire way to school. We would walk down the halls the first day together, hugging goodbye, smiling and wishing each other luck. Passer-Byers would stare and say enviously, “Wow, that Escoe family really has it together, don’t they?”
Hmmmmm. Who was I kidding?
Those of you who know me, know that I am a scrapbooker. And those of you that know scrapbooking, know that the first day of school isn’t about the academic and social potential of children --- it’s all about the first-day-of-school photos.
So, a few days before school began I told my children to pick out what clothes they wanted to wear the first day, so I could give my approval and/or permission. Brayden, of course, is at that stage where the more glitter and sequins on a blouse, the better. Clothing stores don’t help, when for some reason anything larger than a size 6 is a direct Brittney Spears knock-off, but as far as Brayden is concerned, the more bejeweled, the better. Fortunately, we were able to compromise and both of us were happy with her first day clothing choice. (It was her new sandals, with the two-inch heels, that made her look taller than Kellen in the photo, for those of you who asked. And also for those of you who asked, yes, normally her hair curls in the humidity. We straightened it on purpose for the big event -- the first day of third grade!)
Kellen could care less what he wears. Denim, burlap, toga ….. He’s seven years old, and I still pick out his clothes each day because it just doesn’t matter to him. Easy-going, anything is fine …
Then there is Kendrie. NOTHING she selected met the Kristie-Escoe-Seal-Of-Scrapbooking-Approval. NO to Scooby Doo t-shirts, NO to Star Wars t-shirts, NO to camoflauge t-shirts --- truly, it would have looked like I shopped for her back-to-school clothes at Goodwill … (the OLD Goodwill across town!) if I had let her pick out her own clothes.
But she would have NONE of what I was choosing. Everything was “too girly” (even though they plainly weren’t). So we made what I thought was a fair negotiation. She would wear the shirt I picked long enough for pictures, then when I was finished, she could take whatever shirt she wanted to school and change in the bathroom before class started. I ask you, has there ever been a parent more willing to compromise? I think not.
Fast forward to Friday morning. Alarm goes off, I shower and dress, go in the kitchen to make the much-hyped chocolate chip pancakes …. Uh, oh, no chocolate chips. (Remind me to fire that irresponsible personal shopper of mine!) So I made plain pancakes, and when I woke my children, who, by the way, were nowhere near as agreeable and happy as my fantasy children, they were extremely upset that I promised chocolate chip and didn’t come through. Brayden, in fact, went into a complete tailspin and I managed to yell at her before she’d even been up five minutes.
Nothing went as planned, the kids sniped at each other and insisted, grumpily, that they **were NOT** tired, it’s just that school is stupid and why should they have to go? No one could get in their groove, Kellen didn’t understand why he had to brush his teeth, and it was a few minutes before I realized Kendrie wasn’t getting dressed. She had somehow come to the sneaky conclusion that if she didn’t put on the shirt I set out for her (the blue and white striped one in the above photo, which I personally didn’t think was “too girly” but she insisted it was) that I would somehow cave in and let her wear her Field Day t-shirt from last year. The one that all her Pre-K classmates had signed their names in big black marker all over the shirt. Yeah, like *that’s* the look I'm going for in my photos-that-last-a-lifetime.
Again, I reminded her of our compromise …. a few photos, with smiles, then she could change. Things went rapidly downhill, to include tears, wailing, and threats on her part, until I finally yelled at the top of my lungs in frustration, “FINE! Then you can just STAY HOME the first day! I don’t really give a crap!”
Yeah, that’s parenting at its finest, don’t ya think?
Finally, finally, we were running late, but at least out the door. We made it to school and Kendrie posed for the requisite photos with her Kindergarten teacher, then couldn’t get to the bathroom to change clothes fast enough.
I realize, truly I do, that the shirt my child wears on the first day of school isn’t that big a deal. So she looks like a street urchin at school … does it actually matter? The crux of this problem was that we had made a DEAL, and she wasn’t going to stick with it, so I had to put down the ugly, heavy parenting foot and ruin everyone’s morning. Honestly, those weren’t smiles on their faces in the photo in front of our house, they were looks of terror that I was going to lose my mind and start screaming again in front of the neighbors.
So last night, mentally preparing for this morning, the 2nd day of school, I decided things were going to go much better. I had the chocolate chips at the ready and the pancakes were a huge success. No one lost their temper, everyone was dressed and ready to go, even a few minutes early. There was laughter in the air and I was mentally patting myself on the back and feeling quite smug for having gotten my act together and being the parent I *wanted* to be on Friday.
Then, it happened. Brayden was squeezing the gelatinous globby ball-thing that she got at the Dollar Store yesterday, and got a bit too enthusiastic watching the fish “swim” through the goo …. When the entire thing exploded all over her. So suddenly she’s standing there in her new skirt and blouse and Lizzie McGuire tennis shoes, with glitter and gel splattered all over her, dripping down off her face and out of her hair, forming a big puddle of goo on the kitchen floor that the dog was trying to lick up and tracking all over the place. And we had exactly ten minutes before it was time to leave for school.
Believe it or not (probably NOT, my friends would say) I didn’t lose my cool. No yelling, no insane flailing of my arms as I try to make my point about making huge messes ten minutes before school starts ….. I simply threw her in the shower real quick and threw the goo-splattered clothes in the washer. We even made it to school on time, can you believe it? It was another mad rush in the front door, not very pretty, but we made it. I’m hoping tomorrow goes smoothly --- from the buzzing of the alarm until the ringing of the first school bell. Third mornings a charm, right? If not, I suppose we’ve got nine entire months to get it right.
Another “Scrapbooking Moment” that I thought I would share with you is the interview I did with Kendrie when she returned home after her first day. This is a great tradition I’ve done with my kids every year, and it’s always both enlightening and entertaining. Here goes this years:
FIRST DAY OF SCHOOL QUESTIONS:
What is your teacher’s name? "Mrs. Mxxxxxxxx"
How did she act in the classroom today? "Nice."
Who are your best friends in class? "Nicholas." (big surprise, huh?)
What was your favorite part of the first day? "Laying down."
What is your favorite part of the classroom? "The dinosaurs."
What did you eat for lunch? "Pizza"
What was the funniest thing that happened today? "Nothing, really."
What do you want to be when you grow up? "Annikan Skywalker."
Your best grade will probably be in? "Running."
If I could stay up late on a school night I would: “Eat popcorn and watch Annikan Skywalker.”
Of all the things I can do, I am best at: “Loving Mommy and Daddy and Brayden and Kellen and myself and Jesus and God.”
Thanks for checking in,
Kristie
So, I feel the need to clarify the pained expression on Kendrie’s face in the first-day-of-school photos, and perhaps send out feelers to see if I have any competition for this year's “Worst Parent of the Year” award.
As you know, school here started last Friday. My kids actually like school and I was so excited to send them off the first day in real, Beaver-Cleaver-style.
The night before, I happily and lovingly set my alarm for 6am so I would have time to shower, dress, and make them their favorite breakfast, homemade chocolate chip pancakes, before school. I had images of my three beautiful children waking, pleasantly, with the sunlight streaming through their bedroom windows as birds chirped outside, then scampering happily into the kitchen for breakfast, our family holding hands and perhaps singing a verse or two of “Kumbaya” around the breakfast table. Then, they would all get dressed, brush hair and teeth without a single complaint, and we’d grab the backpacks and clamber in the van, laughing and joking our entire way to school. We would walk down the halls the first day together, hugging goodbye, smiling and wishing each other luck. Passer-Byers would stare and say enviously, “Wow, that Escoe family really has it together, don’t they?”
Hmmmmm. Who was I kidding?
Those of you who know me, know that I am a scrapbooker. And those of you that know scrapbooking, know that the first day of school isn’t about the academic and social potential of children --- it’s all about the first-day-of-school photos.
So, a few days before school began I told my children to pick out what clothes they wanted to wear the first day, so I could give my approval and/or permission. Brayden, of course, is at that stage where the more glitter and sequins on a blouse, the better. Clothing stores don’t help, when for some reason anything larger than a size 6 is a direct Brittney Spears knock-off, but as far as Brayden is concerned, the more bejeweled, the better. Fortunately, we were able to compromise and both of us were happy with her first day clothing choice. (It was her new sandals, with the two-inch heels, that made her look taller than Kellen in the photo, for those of you who asked. And also for those of you who asked, yes, normally her hair curls in the humidity. We straightened it on purpose for the big event -- the first day of third grade!)
Kellen could care less what he wears. Denim, burlap, toga ….. He’s seven years old, and I still pick out his clothes each day because it just doesn’t matter to him. Easy-going, anything is fine …
Then there is Kendrie. NOTHING she selected met the Kristie-Escoe-Seal-Of-Scrapbooking-Approval. NO to Scooby Doo t-shirts, NO to Star Wars t-shirts, NO to camoflauge t-shirts --- truly, it would have looked like I shopped for her back-to-school clothes at Goodwill … (the OLD Goodwill across town!) if I had let her pick out her own clothes.
But she would have NONE of what I was choosing. Everything was “too girly” (even though they plainly weren’t). So we made what I thought was a fair negotiation. She would wear the shirt I picked long enough for pictures, then when I was finished, she could take whatever shirt she wanted to school and change in the bathroom before class started. I ask you, has there ever been a parent more willing to compromise? I think not.
Fast forward to Friday morning. Alarm goes off, I shower and dress, go in the kitchen to make the much-hyped chocolate chip pancakes …. Uh, oh, no chocolate chips. (Remind me to fire that irresponsible personal shopper of mine!) So I made plain pancakes, and when I woke my children, who, by the way, were nowhere near as agreeable and happy as my fantasy children, they were extremely upset that I promised chocolate chip and didn’t come through. Brayden, in fact, went into a complete tailspin and I managed to yell at her before she’d even been up five minutes.
Nothing went as planned, the kids sniped at each other and insisted, grumpily, that they **were NOT** tired, it’s just that school is stupid and why should they have to go? No one could get in their groove, Kellen didn’t understand why he had to brush his teeth, and it was a few minutes before I realized Kendrie wasn’t getting dressed. She had somehow come to the sneaky conclusion that if she didn’t put on the shirt I set out for her (the blue and white striped one in the above photo, which I personally didn’t think was “too girly” but she insisted it was) that I would somehow cave in and let her wear her Field Day t-shirt from last year. The one that all her Pre-K classmates had signed their names in big black marker all over the shirt. Yeah, like *that’s* the look I'm going for in my photos-that-last-a-lifetime.
Again, I reminded her of our compromise …. a few photos, with smiles, then she could change. Things went rapidly downhill, to include tears, wailing, and threats on her part, until I finally yelled at the top of my lungs in frustration, “FINE! Then you can just STAY HOME the first day! I don’t really give a crap!”
Yeah, that’s parenting at its finest, don’t ya think?
Finally, finally, we were running late, but at least out the door. We made it to school and Kendrie posed for the requisite photos with her Kindergarten teacher, then couldn’t get to the bathroom to change clothes fast enough.
I realize, truly I do, that the shirt my child wears on the first day of school isn’t that big a deal. So she looks like a street urchin at school … does it actually matter? The crux of this problem was that we had made a DEAL, and she wasn’t going to stick with it, so I had to put down the ugly, heavy parenting foot and ruin everyone’s morning. Honestly, those weren’t smiles on their faces in the photo in front of our house, they were looks of terror that I was going to lose my mind and start screaming again in front of the neighbors.
So last night, mentally preparing for this morning, the 2nd day of school, I decided things were going to go much better. I had the chocolate chips at the ready and the pancakes were a huge success. No one lost their temper, everyone was dressed and ready to go, even a few minutes early. There was laughter in the air and I was mentally patting myself on the back and feeling quite smug for having gotten my act together and being the parent I *wanted* to be on Friday.
Then, it happened. Brayden was squeezing the gelatinous globby ball-thing that she got at the Dollar Store yesterday, and got a bit too enthusiastic watching the fish “swim” through the goo …. When the entire thing exploded all over her. So suddenly she’s standing there in her new skirt and blouse and Lizzie McGuire tennis shoes, with glitter and gel splattered all over her, dripping down off her face and out of her hair, forming a big puddle of goo on the kitchen floor that the dog was trying to lick up and tracking all over the place. And we had exactly ten minutes before it was time to leave for school.
Believe it or not (probably NOT, my friends would say) I didn’t lose my cool. No yelling, no insane flailing of my arms as I try to make my point about making huge messes ten minutes before school starts ….. I simply threw her in the shower real quick and threw the goo-splattered clothes in the washer. We even made it to school on time, can you believe it? It was another mad rush in the front door, not very pretty, but we made it. I’m hoping tomorrow goes smoothly --- from the buzzing of the alarm until the ringing of the first school bell. Third mornings a charm, right? If not, I suppose we’ve got nine entire months to get it right.
Another “Scrapbooking Moment” that I thought I would share with you is the interview I did with Kendrie when she returned home after her first day. This is a great tradition I’ve done with my kids every year, and it’s always both enlightening and entertaining. Here goes this years:
FIRST DAY OF SCHOOL QUESTIONS:
What is your teacher’s name? "Mrs. Mxxxxxxxx"
How did she act in the classroom today? "Nice."
Who are your best friends in class? "Nicholas." (big surprise, huh?)
What was your favorite part of the first day? "Laying down."
What is your favorite part of the classroom? "The dinosaurs."
What did you eat for lunch? "Pizza"
What was the funniest thing that happened today? "Nothing, really."
What do you want to be when you grow up? "Annikan Skywalker."
Your best grade will probably be in? "Running."
If I could stay up late on a school night I would: “Eat popcorn and watch Annikan Skywalker.”
Of all the things I can do, I am best at: “Loving Mommy and Daddy and Brayden and Kellen and myself and Jesus and God.”
Thanks for checking in,
Kristie
Friday, August 05, 2005
CAN YOU HEAR THE HALLELUJAH CHORUS???
131 Days to Go
I suspected it was time for the kids to return to school when they complained, after swimming all day at our friend Renee’s house, going out to dinner, and playing with their new toys, that they were bored.
I suspected it was time for the kids to return to school when I suggested playing in the sprinklers and they said it was too hot and they didn’t want the grass seeds on their feet.
I suspected it was time for the kids to return to school when they started asking to eat Nerds candy for breakfast …. and I let them.
I KNEW it was time for the kids to return to school when Kellen discovered, yesterday, the age-old method of how to annoy the crap out of your big sister in the back seat of the van. Put your finger, and your face, right up to the dividing line in the middle of the back seats. Stare at her, but do not cross the line with your finger or any part of your body. Then, when the complaining from your sister annoys your mother, and your mother tells you to “Stay on your own side of the van!” you can honestly say that you are, and there’s nothing your sister can do about it.
I’ll explain *THIS* look, and why I suspect years of therapy are in our future, in my next journal entry. In the meantime, I’m going to sit back for the next half hour until it’s time to pick up my kids, revel in the silence, and maybe even eat a bon-bon or two.
Have a great weekend,
Kristie
I suspected it was time for the kids to return to school when they complained, after swimming all day at our friend Renee’s house, going out to dinner, and playing with their new toys, that they were bored.
I suspected it was time for the kids to return to school when I suggested playing in the sprinklers and they said it was too hot and they didn’t want the grass seeds on their feet.
I suspected it was time for the kids to return to school when they started asking to eat Nerds candy for breakfast …. and I let them.
I KNEW it was time for the kids to return to school when Kellen discovered, yesterday, the age-old method of how to annoy the crap out of your big sister in the back seat of the van. Put your finger, and your face, right up to the dividing line in the middle of the back seats. Stare at her, but do not cross the line with your finger or any part of your body. Then, when the complaining from your sister annoys your mother, and your mother tells you to “Stay on your own side of the van!” you can honestly say that you are, and there’s nothing your sister can do about it.
I’ll explain *THIS* look, and why I suspect years of therapy are in our future, in my next journal entry. In the meantime, I’m going to sit back for the next half hour until it’s time to pick up my kids, revel in the silence, and maybe even eat a bon-bon or two.
Have a great weekend,
Kristie
Monday, August 01, 2005
HMMMM. ANYONE NOTICE A PATTERN HERE?
135 Days to Go
In case you haven’t figured out from following this journal, or if you’ve never been the lucky recipient (said sarcastically) of one of my annual Christmas letters, you might not realize that I am a big-time “Let Us Review” type of person. Lists, evaluations, comparisons … they didn’t call me “Queen of the Post-It Note” at my last job for nothing!
So, in that vein, and considering school starts on Friday, let us recap summer vacation, as spent this year by the Escoe family:
Week One: Rain, Kendrie starts coughing. Slightly depressing week.
Week Two: More rain, more coughing. Slightly more depressing week.
Week Three: Sunshine, but no one in our family can enjoy it because we are all hit with a random stomach virus. Rather depressing week.
Week Four: Kendrie, having serious problems getting over the stomach virus, goes through more flushable baby wipes than the McCoy septuplets during potty training. An even more depressing week.
Week Five: Inpatient at Chez Scottish Rite Hospital when counts hit rock bottom and fever hits. Blood transfusions, IVIG transfusions, frightening reactions, IV antibiotics, nectar of the Gods (morphine), one seriously stressed out mom, and bodily function activity that has no business being mentioned in a family journal. Seriously depressing week.
Week Six: Rain starts again, but Kendrie is released from hospital and slowly starts to feel better. Slightly less depressing week.
Week Seven: Invite ourselves to our friends Kody and Ryan’s house for a cookout/pool party; have our first truly good day of summer. Invite ourselves to our friends Ryan and Brandon’s house for a weekend in Atlanta, attending the CURE picnic and a birthday party. Actually, a really good week.
Week Eight: Invite ourselves to our friends Jacob and Nathan’s house in Ohio for a five-day getaway. Another really good week.
Week Nine: Invite ourselves to the Atlanta Braves game in Atlanta. Invite ourselves to our friends Riley, Derin and Brody’s house in Florida for the weekend. Yet another really good week!
So, it only took me nine weeks, but I appear to have cracked the code on enjoying our summer vacation. When I rely on Mother Nature and random luck to get by, basically, life stinks. But! When we brazenly, and without shame, invite ourselves to visit friends, stay in their homes, eat their food, and take part in their fun activities, there is LOTS of fun to be had! Too bad there’s only three days of summer vacation left, or I’d be tempted to call up another unsuspecting family and test my theory by vacationing yet again with friends who haven’t yet figured out my scam! (Hey! Are those sighs of relief that I just heard from some of you???)
So, what’s the motto here? Not sure, but I bet it’s got something to do with boldly and bald-facedly inviting yourself along for the ride.
Thanks to Erin and Joe for putting up with the infestation of Escoe family members in their home this past weekend. I mean, just because our Lighthouse Retreat was canceled didn’t mean I was ready to give up my hokey dream of beach photos of the kids, in the matching outfits I bought…. that they hated.
Here’s proof:
And here’s the proof that we actually were able to get in the ocean, for about half an hour (except for Kellen, who was terrified of possible jelly fish in the area) before the rains came down:
So, once again, thanks to the kindness of friends, and a totally presumptous attitude on my part, our family was able to enjoy a few days together and spend time with people that we care about. Really, life doesn’t get any better than that. :)
Thanks for checking in,
Kristie, who is NOT, despite appearances to the contrary, counting down the hours, minutes, seconds, until school starts Friday morning at 8:30am and not a minute later.
*******************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Oh, this is SUCH an easy one! Having to go to the stinkin’ lab on base and have the stinkin’ technician draw blood out of my stinkin’ arm! Mom *said* she used the magic cream, but I think maybe the magic is wearing off because it hurt. Then, even though my counts are great again, my doctor’s office said to keep my chemo at the sixty-five percent I’ve been taking. I’m sorry, but if I go to the trouble of getting poked, the least they can do is acknowledge my good counts in some way, like upping my chemo --- a measly Spiderman sticker is SO not worth the effort!
BEST PART OF HAVING CANCER TODAY: Getting to go to our monthly support group meeting at the Ronald McDonald house tonight. I really like playing with those Child Life Specialists, and getting to do arts and crafts. We drew faces on paper plates and then glued them to Popsicle sticks to make masks. Mom seemed a little surprised that I drew a frowny, sad face and told the lady it was when I was getting my blood drawn today. Geesh! I *told* her that it hurt, did she not believe me???
In case you haven’t figured out from following this journal, or if you’ve never been the lucky recipient (said sarcastically) of one of my annual Christmas letters, you might not realize that I am a big-time “Let Us Review” type of person. Lists, evaluations, comparisons … they didn’t call me “Queen of the Post-It Note” at my last job for nothing!
So, in that vein, and considering school starts on Friday, let us recap summer vacation, as spent this year by the Escoe family:
Week One: Rain, Kendrie starts coughing. Slightly depressing week.
Week Two: More rain, more coughing. Slightly more depressing week.
Week Three: Sunshine, but no one in our family can enjoy it because we are all hit with a random stomach virus. Rather depressing week.
Week Four: Kendrie, having serious problems getting over the stomach virus, goes through more flushable baby wipes than the McCoy septuplets during potty training. An even more depressing week.
Week Five: Inpatient at Chez Scottish Rite Hospital when counts hit rock bottom and fever hits. Blood transfusions, IVIG transfusions, frightening reactions, IV antibiotics, nectar of the Gods (morphine), one seriously stressed out mom, and bodily function activity that has no business being mentioned in a family journal. Seriously depressing week.
Week Six: Rain starts again, but Kendrie is released from hospital and slowly starts to feel better. Slightly less depressing week.
Week Seven: Invite ourselves to our friends Kody and Ryan’s house for a cookout/pool party; have our first truly good day of summer. Invite ourselves to our friends Ryan and Brandon’s house for a weekend in Atlanta, attending the CURE picnic and a birthday party. Actually, a really good week.
Week Eight: Invite ourselves to our friends Jacob and Nathan’s house in Ohio for a five-day getaway. Another really good week.
Week Nine: Invite ourselves to the Atlanta Braves game in Atlanta. Invite ourselves to our friends Riley, Derin and Brody’s house in Florida for the weekend. Yet another really good week!
So, it only took me nine weeks, but I appear to have cracked the code on enjoying our summer vacation. When I rely on Mother Nature and random luck to get by, basically, life stinks. But! When we brazenly, and without shame, invite ourselves to visit friends, stay in their homes, eat their food, and take part in their fun activities, there is LOTS of fun to be had! Too bad there’s only three days of summer vacation left, or I’d be tempted to call up another unsuspecting family and test my theory by vacationing yet again with friends who haven’t yet figured out my scam! (Hey! Are those sighs of relief that I just heard from some of you???)
So, what’s the motto here? Not sure, but I bet it’s got something to do with boldly and bald-facedly inviting yourself along for the ride.
Thanks to Erin and Joe for putting up with the infestation of Escoe family members in their home this past weekend. I mean, just because our Lighthouse Retreat was canceled didn’t mean I was ready to give up my hokey dream of beach photos of the kids, in the matching outfits I bought…. that they hated.
Here’s proof:
And here’s the proof that we actually were able to get in the ocean, for about half an hour (except for Kellen, who was terrified of possible jelly fish in the area) before the rains came down:
So, once again, thanks to the kindness of friends, and a totally presumptous attitude on my part, our family was able to enjoy a few days together and spend time with people that we care about. Really, life doesn’t get any better than that. :)
Thanks for checking in,
Kristie, who is NOT, despite appearances to the contrary, counting down the hours, minutes, seconds, until school starts Friday morning at 8:30am and not a minute later.
*******************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Oh, this is SUCH an easy one! Having to go to the stinkin’ lab on base and have the stinkin’ technician draw blood out of my stinkin’ arm! Mom *said* she used the magic cream, but I think maybe the magic is wearing off because it hurt. Then, even though my counts are great again, my doctor’s office said to keep my chemo at the sixty-five percent I’ve been taking. I’m sorry, but if I go to the trouble of getting poked, the least they can do is acknowledge my good counts in some way, like upping my chemo --- a measly Spiderman sticker is SO not worth the effort!
BEST PART OF HAVING CANCER TODAY: Getting to go to our monthly support group meeting at the Ronald McDonald house tonight. I really like playing with those Child Life Specialists, and getting to do arts and crafts. We drew faces on paper plates and then glued them to Popsicle sticks to make masks. Mom seemed a little surprised that I drew a frowny, sad face and told the lady it was when I was getting my blood drawn today. Geesh! I *told* her that it hurt, did she not believe me???
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