Howdy, and Merry Belated Christmas to all of you! I hope everyone had a fabulous holiday, filled with good tidings, good cheer, love, happiness, joy, peace............ all those things I was unsuccessfully searching for on Christmas Eve, ha! Our Christmas morning was lots of fun; the kids slept in reasonably late (7am) then we had the hour of gift-opening frenzy, the hour of peace while all toys were opened and closely examined (the hour we parents enjoy best) the hour of losing all the parts to all the games, rendering them useless the first day, and then the hour of fighting over whose toys are whose and refusing to share.
My personal philosophy is that on Christmas Day, kids shouldn't have to share their new toys if they don't want. So I try to give them 24 hours of "ownership" before Kendrie's motto of "finders, sweepers, losers, leapers" takes over and the free for all kicks in.
The biggest hit this year appears to be the standing microphone (with actual working amplifier!) that came with Kellen's new guitar. Kendrie derived great pleasure from yelling into it, at least 3,000 times that day, "Hey! Who ordered the poo-poo platter?" and then collapsing on the floor in a heap of giggles. Running a close second for airplay was the Escoe children's trio-choir, performing (about 2,900 times) the popular holiday classic, "Diarrhea", which their father so tactfully taught them. In case you are sadly unfamiliar with this holiday favorite, here are the lyrics, so you can teach your own children:
"If you're sliding into first, and your shorts are about to burst, diarrhea, diarrhea.
If you're sliding into home, and your shorts are full of foam, diarrhea, diarrhea.
If you're sliding into third, and you lay a juicy turd, diarrhea, diarrhea."
There are even sound effects, in addition to the timeless lyrics, but we won't go into that.
So you can imagine about how my afternoon went, listening to that over and over and over. I had to put my foot down when I discovered them dragging the microphone outside to "give the neighbors a concert." If ever a family were to be evicted by the homeowners association, I'm sure the Diarrhea Classic would be a good enough reason.
I want to say thanks to all the people who signed Kendrie's guestbook after reading about my pathetic Christmas Eve and shared their own humorous sagas with me. I guess it's good to know that those Hallmark moments are just as elusive for others, and it probably makes us more normal! I love when people, despite being faced with a life situation like this, can still laugh at themselves. Check out the websites of some of our new friends, and wish them Happy Holidays as well:
Katie's Page Be sure to read her mom's journal entry dated Dec 15th --- another great edition of the Crap Sandwich Chronicles!
Elijah's Page Wonderful family!
Emma's Page Another wonderful family!
Kody's Story An amazing site, and an amazing kid! (love the tattoo, Kody!)
I mentioned in a previous journal entry about the two special gifts we received this Christmas, the notices from Caring Bridge and the American Red Cross that donations to these two wonderful organizations had been made in Kendrie's name. Another reminder--- that sometimes the most wonderful gift is a gift of yourself--- came today in the mail ---- a notice from Locks of Love that a donation had been made in Kendrie's honor by our friend Katherine B. in San Pedro, California (LA Air Base.)
Locks of Love is a charitable organization that takes donated human hair and provides hair prosthetics for children with long term medical hair loss, free of charge or on a sliding scale. It takes four months, and a dozen donations, to make a single wig. The organization only accepts donations that are 10 inches or more in length, so this was no little thing that Katherine did! If you would like more information about Locks of Love, their web site is www.locksoflove.org. And thank you Katherine, for such a selfless, generous donation!!! See? Kindness strikes again!!!
much love, Kristie
##########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I can't even step outside the house for one second without my mom yelling at me to put a stocking hat on my bald head!
BEST THING ABOUT HAVING CANCER TODAY: My cool new Kim-Possible stocking hat! BooYa-!
Tuesday, December 30, 2003
Wednesday, December 24, 2003
"LEUKEMIA IS THE GRINCH THAT STOLE MY CHRISTMAS SPIRIT (or at the very least, spit in my eggnog.)"
CHRISTMAS EVE, 2003
We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.
First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.
We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.
This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???
Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")
Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:
Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"
And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?
I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???
If anyone finds it before morning, please tuck it into my stocking.
Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
Kristie
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.
We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.
First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.
We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.
This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???
Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")
Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:
Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"
And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?
I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???
If anyone finds it before morning, please tuck it into my stocking.
Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
Kristie
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.
Saturday, December 20, 2003
Christmas Letter 2003
Ho, Ho, Ho, and a MERRY Christmas! The only thing that makes me happier than opening ridiculously expensive Christmas presents (which let's be honest, my husband is in the military so *that* rarely happens, ha!) is opening the cards, letters and pictures that everyone sends during the holidays. As you all know, I am a HUGE fan of the bulk Christmas newsletter and love reading them, and sending them, each year. For those of you we have met online, I thought I would post our family Christmas letter here as a journal entry ..... my version of a virtual holiday letter to all of you!
Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!
ANNUAL FAMILY CHRISTMAS LETTER
December 2003
Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:
2003 WAS NOT A GREAT YEAR FOR OUR FAMILY !!!
I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.
Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:
The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.
Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)
The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.
Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.
I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.
Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.
Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.
Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.
At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.
I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.
Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!
ANNUAL FAMILY CHRISTMAS LETTER
December 2003
Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:
2003 WAS NOT A GREAT YEAR FOR OUR FAMILY !!!
I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.
Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:
The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.
Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)
The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.
Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.
I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.
Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.
Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.
Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.
At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.
I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.
Friday, December 19, 2003
Oh, yeah, sometimes I forget that Blaine has cancer, too
Brief update: I feel embarrassed for not posting this earlier, since so many of you were kind enough to worry and wonder, but we did get the news that Blaine's biopsy results were clear (nothing more than scar tissue) as the doctors suspected. Thank goodness, because like someone said, watching my head actually explode wouldn't have been a pretty sight. :) Thanks so much to everyone for caring!
Monday, December 15, 2003
Interim Maintenance Begins
HELLO?? RANDOM HOUSE?? ARE YOU THERE???
Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!
For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!
Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.
Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!
Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)
You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!
For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie
####################################################
KENDRIE’S TOP FIVE WORST THINGS ABOUT CONSOLIDATION:
1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.
KENDRIE’S TOP FIVE BEST THINGS ABOUT CONSOLIDATION:
1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???
Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!
For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!
Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.
Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!
Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)
You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!
For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie
####################################################
KENDRIE’S TOP FIVE WORST THINGS ABOUT CONSOLIDATION:
1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.
KENDRIE’S TOP FIVE BEST THINGS ABOUT CONSOLIDATION:
1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???
Wednesday, December 10, 2003
Pointless thoughts ..... no surprise its the only kind I seem to have lately
Pointless thoughts, reflections, aimless mental ramblings………………
When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.
Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.
Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.
** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”
I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”
** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?
** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????
Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.
“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis
“I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.
“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.
“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.
And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:
“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”
I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!
Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.
MARCUS’S SITE
Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.
BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!
When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.
Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.
Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.
** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”
I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”
** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?
** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????
Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.
“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis
“I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.
“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.
“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.
And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:
“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”
I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!
Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.
MARCUS’S SITE
Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.
BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!
Monday, December 08, 2003
Consolidation - Day 21
Well, technically, it’s only Day 20, but I’m discovering that in the world of chemotherapy (or at least in our world of chemotherapy) “close” is good enough. The first time or two our clinic visit was bumped a day in either direction I panicked, but now realize going in a day early or late doesn’t seem to matter, and is sometimes unavoidable. It IS, however, very difficult on our wonderful military and scrapbooking friends who keep making plans to bring us dinner on our clinic days, when the days keep changing! (it’s fine with me, though, I’ll take a home cooked meal, especially home cooked by someone else, anytime!)
Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.
We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)
“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)
The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.
At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!
Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.
Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
############################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!
BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!
Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.
We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)
“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)
The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.
At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!
Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.
Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
############################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!
BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!
Wednesday, December 03, 2003
Consolidation - Day 15
THANKS, THE SWEATER EPISODE, AND A DEFINING MOMENT (no, not one of those “Hallmark” ones, either)
Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!
Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:
`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````
So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.
We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.
She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.
Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.
We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”
Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?
I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.
On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.
Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!
####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!
BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!
Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!
Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:
`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````
So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.
We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.
She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.
Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.
We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”
Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?
I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.
On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.
Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!
####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!
BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!
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