Q. What, exactly, is leukemia?
"Well, to be honest, it’s pretty much the biggest suck-fest our family has ever faced. ---- Oh, you wanted the medical definition? Well, in that case, leukemia is cancer of the blood forming tissues that make up the bone marrow inside the large bones. The diseased bone marrow then floods the body with abnormal white cells. These cells do not perform the infection fighting functions of healthy, mature white cells. In addition, production of red cells, which carry oxygen, and platelets, which help prevent bleeding, is decreased. Around our house, in laymen’s terms, leukemia is “sick blood”."
Q. Are there different types of leukemia?
"Why, funny you should ask! Yes, there are. Childhood leukemia is different than adult leukemia, and even childhood leukemia can be broken down into several different types."
Q. What type does Kendrie have?
"She has ALL, which stands for Acute Lymphoblastic (or Lymphocytic) Leukemia. Basically, fast acting, and ugly. But I think all leukemias are ugly, so maybe I’m not the best person to explain. 75% of children with leukemia have ALL. It’s always nice to be part of the popular crowd, don’t ya think?"
Q. When will Kendrie be in remission?
"Kendrie was in remission by Day 14 of her chemotherapy regimen. Remission is achieved when all signs and symptoms of leukemia disappear and abnormal cells are no longer found in the blood, bone marrow, or cerebrospinal fluid. Now we can focus on the fun stuff, like the side effects from chemo." (she said with a lilting laugh …. NOT!)
Q. As long as she is in remission, why does she still have chemotherapy?
"Despite being in remission, if chemotherapy were to be stopped now, it is definite that the leukemia would return. Discontinuation of treatment would be fatal."
Q. Well, holy crap, isn’t there EVER any good news at your house?
"Why, yes there is. At some point in time (opinions vary, but we’re talking ball-park a few years after treatment ends) Kendrie will be considered “cured”. That means that the risk of the original disease returning is no greater than the risk faced by all healthy children of developing the same disease."
Q. So, then you can quit worrying?
"Does the phrase 'when monkeys fly out of my butt' mean anything to you?"
Q. So, how long is treatment, anyway?
"For kids with standard risk ALL, like Kendrie, there are several treatment options with different protocols, but generally speaking, treatment lasts two years, two months for girls, and three years, two months for boys."
Q. Why is treatment longer for boys?
"Because they’re stinky."
Q. Will Kendrie ever have to have a bone marrow transplant, or one of those con-tro-vers-ial cord blood transplants we keep hearing about?
"Hopefully not. Barring any complications or relapse, Kendrie’s chemotherapy regimen should be enough to win this battle. For kids on higher risk protocols, or those that relapse, other treatment options can include one or more of the following: increased chemo, bone marrow transplant (BMT), peripheral blood stem cell transplant (PBSCT), or radiation therapy."
Q. How can I help?
"OK, so maybe you didn’t really ask this question, but I’m going to tell you anyway. Donate blood. As often as possible. And consider signing up with the American Bone Marrow Registry. Call 1-800-745-2452 or visit American Bone Marrow Registry for more information.
Saturday, February 28, 2004
Monday, February 23, 2004
“A journey of a thousand miles begins with a single rest room stop.”
Ok, so here’s the deal. We live approximately one mile from the interstate, and the Scottish Rite AFLAC Cancer Center in Atlanta, where Kendrie receives her outpatient chemotherapy, is also approximately one mile from the interstate. There are 110 interstate miles in between. Now, I’m no math genius, but I did take Pre-Algebra in 8th grade. So as best I can figure, with an average highway speed of 72 mph, it should take 92 minutes to get from point A (our house) to point B (the clinic). And the same hour and a half to return home, wouldn’t you think?
So why is it always double that every time we make the trip? Could someone please explain that to me? What law of forward motion isn’t working for us???? I’m guessing there might be a problem with our method of travel, so I thought I would recant our journey today for you, in the hope that someone out there can give me some guidance and suggestions for improvement. Here’s how it went:
12:10 pm -- Make sure everyone uses bathroom before leaving house. Get Kendrie settled in back seat; offer three kinds of crackers, open package she chooses, make sure she can reach her juice, get DVD ready (fast forward through previews and hit play) --- ok? I think we’re ready to go!
12:15pm -- Leave Home, Mile 0
12:20 pm -- Arrive at Bank to withdraw cash so you can get through toll road
12:30 -- Get on Interstate, Mile 1, “Freaky Friday” playing on the DVD
Now let me explain something before I go any further with this story. We drive a mini-van, similar to the millions of others out there on the road. Behind the driver’s seat is a bucket seat where Kendrie normally sits in her car seat. Brayden and Kellen sit on the bench in the very back in booster seats. The bucket seat behind the passenger’s seat has been removed and is in the garage, sitting in a corner. We leave that space open for book-bags, groceries, etc. It’s nice to have extra room with three kids getting in and out of the van all day.
When we drive to and from Atlanta, however, Kendrie prefers to sit in the back seat, so she has more room for her books, toys, snacks, etc. I think that’s a reasonable request. We have a portable DVD player that I attach to the seat kitty-corner in front of her, that she can’t reach to operate herself. And she and I can’t reach each other. Just needed to clear that up, so you have a mental image of my tale of woe.
Mile 15 -- Child wants another package of crackers but can’t open them herself. You instruct her to toss them up to you, which she does successfully.
Mile 16 -- Veer wildly across interstate as you try to open the package of crackers, a task requiring Herculean strength and both hands. What is this package…childproof?
Mile 16 and a half -- Succeed in opening crackers, veer back the other way on the highway as you twist around in the drivers seat and toss the crackers back to the child.
Mile 17 -- Bad aim, miss target, crackers wind up in back end of van near the folding chairs.
Mile 18 -- Repeat with last remaining package of crackers, fortunately successful this time and child begins to eat crackers, offering ten minutes of peace and quiet.
Mile 39 -- Child needs to stop and use restroom. Pull over, go to McDonalds to use bathroom, child declares she is still hungry and wants a Happy Meal. Stand in line, buy Happy meal, discover child is really not hungry, just wanted the Lion King toy inside the Happy Meal. Decide since you are pulled over anyway, might as well top off the gas tank so you don’t have to stop later when it is dark. Finish pumping gas, get the DVD player ready to go again (the only bad thing about DVD players, or at least OUR DVD player, is that every time I turn off the ignition, the movie stops. When I start the car again, it starts over at the beginning. So I have to fast-forward to find the part where we left off.) Finally, everyone settled, hit the highway again.
Mile 40 -- console child who discovers Happy Meal Toy is a cheap piece of crap that doesn’t work the way it is supposed to.
Mile 59 -- pull over so YOU can use the restroom. Curse the 24 ounce bottle of water you drank after walking on the treadmill this morning.
Mile 79 -- pull over to put emla cream on port, approximately 2pm, one hour before appointment time.
Mile 110 -- arrive at clinic at 2:45 pm for 3pm appointment. Whew! You just made it!
3pm scheduled appointment time; sit in waiting room until 3:15 pm, smile politely at the lady sitting next to you who is complaining about her thirty minute drive across town.
3:30 pm -- Have exam, get port accessed, receive chemo, etc. all of which lasts approximately one and a half hours. Entertain yourself and your child by watching “Free Willy” on the vcr in the exam room.
5pm -- chemo finished, ok to leave clinic. Child is upset that Willy might not actually be freed, sit in room another 25 minutes to watch end of movie, assuring everyone that whale poachers are indeed the bad guys.
5:25 pm -- leave clinic, waving goodnight to the cleaning crew.
5:27 -- groan inwardly as child selects “Beethoven’s 5th” for driving-home-movie. Not only will you have to listen to that obnoxious little girl whine “Uncle Freddy! Uncle Freddy!” a million times, but this movie doesn’t allow you to fast forward through the previews. So you sit through the previews, all of which you hate, until you can push play.
5:30 -- pull onto Interstate, Mile 0.
6pm -- you’ve been traveling in Atlanta rush hour traffic for half an hour and have gone nine miles. Decide to cut your losses and pull over for dinner. Endure the slowest service, ever, in the history of the planet, at Red Lobster.
Mile 9 -- 7:30 pm, FINALLY get your check and can pay and leave, taking the leftover yummy cheese biscuits, which child loved, in a small to-go box.
Mile 9 and a half -- child drops sippy cup of apple juice and starts crying. Convince child to wait until Mile 25 before you get onto slower interstate to pull over. Child also upset because she can’t open the to-go box in order to eat the biscuits.
Mile 25 -- pull over. Find sippy cup which has somehow rolled under driver’s seat. Figure since you’re crawling around anyway, locate package of wayward crackers in case child gets hungry later. Double and triple check with child that she doesn’t need to go potty, since you are pulled over anyway. Child assures you she does not need to go. After you get back in the drivers seat, child realizes she can’t find the crappy Happy Meal toy from earlier and you have to get out again and go back there and find it for her.
Mile 30 -- pull over so child can go to restroom. Sit through stupid pre-views again since DVD player went back to the beginning when you turned off the ignition. Find correct place on movie. Get back on the highway.
Mile 38 -- pull over to buy child a pop since she doesn’t want the damn apple juice anyway.
Mile 53 -- realize you should have bought yourself a pop, too, since you need to take some aspirin at this point. Luckily, when you pull over at a gas station, child announces she has to go to the bathroom again. Aha! For once, killing two birds with one stone. Get out of van, admire wild cat in parking lot. Pray wild cat isn’t rabid. Use restroom, buy pop, get back in van, sit through that idiotic “Johnny English” preview for the third time (How I dislike Rowan Atkinson!) get the dvd player ready and the movie in the right place, get back on the highway.
Mile 70 -- wonder why your aspirin isn’t working.
Mile 71 -- realize you forgot to take the aspirin.
Mile 109 -- 9:20 pm, child falls asleep.
So, suggestions anyone?? Besides Depends???
Wish us luck, we’re back on the steroids. Kendrie’s counts were good today, so her doctor is hopeful that she’ll get through this harsh DI phase with little problem. Had her numbers been low today, he said typically that would indicate a probable hospital stay by the end of the week. Since her ANC was 1490, which is still reasonably high, especially considering all the chemo she’s been getting, we’re hoping to avoid going inpatient. Brayden came home from school today with an upset stomach again, this time complete with fever, so we’ll have to keep the two of them apart as best we can for the next few days.
We don’t have to go back to Atlanta for two weeks which is great, because we get out of the drive, (SEE ABOVE) but also a little scary since her bloodwork will be done on base next Monday, for the first time since she was diagnosed. It will be the first blood draw from her arm since she was so traumatized at the beginning. They have been able to use her port every time since it was accessed for meds anyway. Just going to the lab to ask them a question about it the other day, she started crying. Yikes, wish us luck!
Thanks for checking the site and signing the guestbook. I know I sound like a broken record, but we really get a kick out of reading the messages.
Take care, Kristie
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KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I wasn't home and didn't get to eat any of the CHEESY lasagna that Ms. Erin brought us! But Dad and the kids say thank you!
BEST THING ABOUT HAVING CANCER TODAY: For once, I was on the "giving" end at the clinic and got to put the new toys we bought in the treasure box, for the other kids who are getting back pokes and leg pokes this week, poor saps. I've been there, and know their pain! Hey, Madie, if you're going to clinic this week, tell Ms. Laura you want in the treasure box --- all those glitter wands are from me!! Grab you one, girlfriend!
So why is it always double that every time we make the trip? Could someone please explain that to me? What law of forward motion isn’t working for us???? I’m guessing there might be a problem with our method of travel, so I thought I would recant our journey today for you, in the hope that someone out there can give me some guidance and suggestions for improvement. Here’s how it went:
12:10 pm -- Make sure everyone uses bathroom before leaving house. Get Kendrie settled in back seat; offer three kinds of crackers, open package she chooses, make sure she can reach her juice, get DVD ready (fast forward through previews and hit play) --- ok? I think we’re ready to go!
12:15pm -- Leave Home, Mile 0
12:20 pm -- Arrive at Bank to withdraw cash so you can get through toll road
12:30 -- Get on Interstate, Mile 1, “Freaky Friday” playing on the DVD
Now let me explain something before I go any further with this story. We drive a mini-van, similar to the millions of others out there on the road. Behind the driver’s seat is a bucket seat where Kendrie normally sits in her car seat. Brayden and Kellen sit on the bench in the very back in booster seats. The bucket seat behind the passenger’s seat has been removed and is in the garage, sitting in a corner. We leave that space open for book-bags, groceries, etc. It’s nice to have extra room with three kids getting in and out of the van all day.
When we drive to and from Atlanta, however, Kendrie prefers to sit in the back seat, so she has more room for her books, toys, snacks, etc. I think that’s a reasonable request. We have a portable DVD player that I attach to the seat kitty-corner in front of her, that she can’t reach to operate herself. And she and I can’t reach each other. Just needed to clear that up, so you have a mental image of my tale of woe.
Mile 15 -- Child wants another package of crackers but can’t open them herself. You instruct her to toss them up to you, which she does successfully.
Mile 16 -- Veer wildly across interstate as you try to open the package of crackers, a task requiring Herculean strength and both hands. What is this package…childproof?
Mile 16 and a half -- Succeed in opening crackers, veer back the other way on the highway as you twist around in the drivers seat and toss the crackers back to the child.
Mile 17 -- Bad aim, miss target, crackers wind up in back end of van near the folding chairs.
Mile 18 -- Repeat with last remaining package of crackers, fortunately successful this time and child begins to eat crackers, offering ten minutes of peace and quiet.
Mile 39 -- Child needs to stop and use restroom. Pull over, go to McDonalds to use bathroom, child declares she is still hungry and wants a Happy Meal. Stand in line, buy Happy meal, discover child is really not hungry, just wanted the Lion King toy inside the Happy Meal. Decide since you are pulled over anyway, might as well top off the gas tank so you don’t have to stop later when it is dark. Finish pumping gas, get the DVD player ready to go again (the only bad thing about DVD players, or at least OUR DVD player, is that every time I turn off the ignition, the movie stops. When I start the car again, it starts over at the beginning. So I have to fast-forward to find the part where we left off.) Finally, everyone settled, hit the highway again.
Mile 40 -- console child who discovers Happy Meal Toy is a cheap piece of crap that doesn’t work the way it is supposed to.
Mile 59 -- pull over so YOU can use the restroom. Curse the 24 ounce bottle of water you drank after walking on the treadmill this morning.
Mile 79 -- pull over to put emla cream on port, approximately 2pm, one hour before appointment time.
Mile 110 -- arrive at clinic at 2:45 pm for 3pm appointment. Whew! You just made it!
3pm scheduled appointment time; sit in waiting room until 3:15 pm, smile politely at the lady sitting next to you who is complaining about her thirty minute drive across town.
3:30 pm -- Have exam, get port accessed, receive chemo, etc. all of which lasts approximately one and a half hours. Entertain yourself and your child by watching “Free Willy” on the vcr in the exam room.
5pm -- chemo finished, ok to leave clinic. Child is upset that Willy might not actually be freed, sit in room another 25 minutes to watch end of movie, assuring everyone that whale poachers are indeed the bad guys.
5:25 pm -- leave clinic, waving goodnight to the cleaning crew.
5:27 -- groan inwardly as child selects “Beethoven’s 5th” for driving-home-movie. Not only will you have to listen to that obnoxious little girl whine “Uncle Freddy! Uncle Freddy!” a million times, but this movie doesn’t allow you to fast forward through the previews. So you sit through the previews, all of which you hate, until you can push play.
5:30 -- pull onto Interstate, Mile 0.
6pm -- you’ve been traveling in Atlanta rush hour traffic for half an hour and have gone nine miles. Decide to cut your losses and pull over for dinner. Endure the slowest service, ever, in the history of the planet, at Red Lobster.
Mile 9 -- 7:30 pm, FINALLY get your check and can pay and leave, taking the leftover yummy cheese biscuits, which child loved, in a small to-go box.
Mile 9 and a half -- child drops sippy cup of apple juice and starts crying. Convince child to wait until Mile 25 before you get onto slower interstate to pull over. Child also upset because she can’t open the to-go box in order to eat the biscuits.
Mile 25 -- pull over. Find sippy cup which has somehow rolled under driver’s seat. Figure since you’re crawling around anyway, locate package of wayward crackers in case child gets hungry later. Double and triple check with child that she doesn’t need to go potty, since you are pulled over anyway. Child assures you she does not need to go. After you get back in the drivers seat, child realizes she can’t find the crappy Happy Meal toy from earlier and you have to get out again and go back there and find it for her.
Mile 30 -- pull over so child can go to restroom. Sit through stupid pre-views again since DVD player went back to the beginning when you turned off the ignition. Find correct place on movie. Get back on the highway.
Mile 38 -- pull over to buy child a pop since she doesn’t want the damn apple juice anyway.
Mile 53 -- realize you should have bought yourself a pop, too, since you need to take some aspirin at this point. Luckily, when you pull over at a gas station, child announces she has to go to the bathroom again. Aha! For once, killing two birds with one stone. Get out of van, admire wild cat in parking lot. Pray wild cat isn’t rabid. Use restroom, buy pop, get back in van, sit through that idiotic “Johnny English” preview for the third time (How I dislike Rowan Atkinson!) get the dvd player ready and the movie in the right place, get back on the highway.
Mile 70 -- wonder why your aspirin isn’t working.
Mile 71 -- realize you forgot to take the aspirin.
Mile 109 -- 9:20 pm, child falls asleep.
So, suggestions anyone?? Besides Depends???
Wish us luck, we’re back on the steroids. Kendrie’s counts were good today, so her doctor is hopeful that she’ll get through this harsh DI phase with little problem. Had her numbers been low today, he said typically that would indicate a probable hospital stay by the end of the week. Since her ANC was 1490, which is still reasonably high, especially considering all the chemo she’s been getting, we’re hoping to avoid going inpatient. Brayden came home from school today with an upset stomach again, this time complete with fever, so we’ll have to keep the two of them apart as best we can for the next few days.
We don’t have to go back to Atlanta for two weeks which is great, because we get out of the drive, (SEE ABOVE) but also a little scary since her bloodwork will be done on base next Monday, for the first time since she was diagnosed. It will be the first blood draw from her arm since she was so traumatized at the beginning. They have been able to use her port every time since it was accessed for meds anyway. Just going to the lab to ask them a question about it the other day, she started crying. Yikes, wish us luck!
Thanks for checking the site and signing the guestbook. I know I sound like a broken record, but we really get a kick out of reading the messages.
Take care, Kristie
#########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I wasn't home and didn't get to eat any of the CHEESY lasagna that Ms. Erin brought us! But Dad and the kids say thank you!
BEST THING ABOUT HAVING CANCER TODAY: For once, I was on the "giving" end at the clinic and got to put the new toys we bought in the treasure box, for the other kids who are getting back pokes and leg pokes this week, poor saps. I've been there, and know their pain! Hey, Madie, if you're going to clinic this week, tell Ms. Laura you want in the treasure box --- all those glitter wands are from me!! Grab you one, girlfriend!
Thursday, February 19, 2004
Prognosis: FAIR
Week #2 of Delayed Intensification #1
Let’s see, when I last exited this journal, we had just begun our journey into pill-taking Hell and couldn’t find our way out with a blowtorch and pith helmet. I’m a little embarrassed to admit that Friday morning I left for a four-day scrapbooking retreat and abandoned Blaine to figure out the best way to get the rest of the steroids in her. We did try gelcaps and I think those will work with more practice, but for the rest of the week, the method that worked best was crushing the pill, mixing it with a teaspoon of applesauce and a heaping teaspoon of sugar. And then Blaine wondered why she was too wound up to go to bed……
We had really psyched ourselves up for the mood swings and huge appetite that normally accompany steroids, and then high-fived ourselves when it didn’t happen. Of course, we forgot that steroids take a few days to clear out of a person's system, and the last few days haven’t exactly been rainbows and bunnies.
Monday night Kendrie and I were in the hotel restaurant, ordering dinner. She insisted on a grilled cheese sandwich, but then wouldn’t eat it because it was “too brown”. She did, however, LOVE the cheese sticks I ordered for an appetizer. However, she proceeded to peel all the breading off and just eat the cheese. So basically I paid $5.69 for four ounces of melted mozzarella. Then she insisted on another helping and knowing that money falls from trees, I ordered it. Naturally, she didn’t want it once it arrived. We left it on the table so the uneaten grilled cheese wouldn’t be so lonely.
Tuesday night we went out to dinner for Brayden’s birthday. While ordering the cheese stick appetizer, I turned to Blaine, in a smug and superior manner, and told him to watch how much Kendrie loves them. Yep, you guessed it, she wouldn’t take a single bite. Then it was “noodle soup” three or four times a day, and this morning she wanted Cheerios. Adamantly. And of course we were out. I offered Rice Crispies and Rice Chex, but were either of those good enough? No! The realization that I wasn’t going to pull a magical, hidden box of Cheerios out from behind my ear was enough to bring on the first, full-fledged tantrum.
There are three basic rules that the entire human race should follow in the pursuit of happiness. Rule one, never stand downwind of someone who spits when they talk. Rule two (for ladies only) never assume the toilet seat is down during the middle of the night. And Rule three, NEVER argue with a child on steroids. Even residual steroids. So being the rule-follower that I am, I told Kendrie to give me five minutes to put on my shoes and brush my hair, then we would go to the grocery store and buy the cereal.
As you might have guessed, during that five-minute span my older daughter’s school called to tell me she had a stomach virus and needed to be brought home. So there I am, in the middle of the school parking lot, with one daughter clutching her abdomen and groaning there was no way she could go to the store, and a VERY persistent four-year old who was NOT giving up on those Cheerios! What’s a caring mom to do? Yep, call her husband and make him cancel his lunch plans to drive all the way across town to buy Cheerios. If someone would invent a drive-through grocery store, they would make a mint.
So, the Cheerios bought us an hour or so of good behavior, then we had the inevitable meltdown. Are you ready for this? Kendrie said I wasn’t attending to business in the bathroom (ie., wiping her bottom) fast enough and that she was missing “Max and Ruby”, heaven forbid! She went into complete hysterics that I wasn’t faster, and wound up lying on the hall floor, crying, screaming, and kicking her legs for twenty minutes. Pointing out to her that actually this tantrum was the reason she was missing “Max and Ruby” seemed kind of useless, so I just sat there for a while. Then I called Blaine and held up the phone so he could enjoy the concert as well. (Poor guy can’t catch a break, even at work!) Finally, when the screams were less frantic and I could hear the huge gulps of air in between, with the quivering sobs starting, I picked her up, carried her to the chair, and rocked with her until she was calm again. I’m hoping the ‘screaming baby’ border I added to the site is only temporary. Although getting to rock and cuddle with her afterwards is almost worth enduring the tantrum.
I’m guessing all the steroids will be out of her system just in time for us to start taking them again next Monday. But we’ve bought mini m&m’s for her to practice pill-swallowing and are hopeful we can at least avoid THAT part of the drama.
I probably could have sat back and laughed at all of this (after all, there are days I want to lay on the hall floor and kick my legs, too) but I had something happen today that made everything more realistic. I was filling out some paperwork for insurance, and had copies of her medical records from the oncologist. Being the proactive parent that I am (ie., nosy) I was reading all of her records. There were no surprises in there until I reached the final page, with the physician’s over-all diagnosis and assessment, and there, on the line following the word “Prognosis”, was FAIR. FAIR? That really caused me to catch my breath because of course I’m still holding on to the 80-85 percent survival rate that we are all quoted.
FAIR. Wow, that really hurts.
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY:
I wouldn’t have thought it was possible for Mom to douse me with Purell any more than she already does, but when my sister came home from school with some sort of upset stomach, I think my mom was looking to set up an IV line of antibacterial soap on all of us! Geez, mom, relax!
BEST THING ABOUT HAVING CANCER TODAY:
For once, mom was force-feeding someone else in the family medicine instead of me!
Let’s see, when I last exited this journal, we had just begun our journey into pill-taking Hell and couldn’t find our way out with a blowtorch and pith helmet. I’m a little embarrassed to admit that Friday morning I left for a four-day scrapbooking retreat and abandoned Blaine to figure out the best way to get the rest of the steroids in her. We did try gelcaps and I think those will work with more practice, but for the rest of the week, the method that worked best was crushing the pill, mixing it with a teaspoon of applesauce and a heaping teaspoon of sugar. And then Blaine wondered why she was too wound up to go to bed……
We had really psyched ourselves up for the mood swings and huge appetite that normally accompany steroids, and then high-fived ourselves when it didn’t happen. Of course, we forgot that steroids take a few days to clear out of a person's system, and the last few days haven’t exactly been rainbows and bunnies.
Monday night Kendrie and I were in the hotel restaurant, ordering dinner. She insisted on a grilled cheese sandwich, but then wouldn’t eat it because it was “too brown”. She did, however, LOVE the cheese sticks I ordered for an appetizer. However, she proceeded to peel all the breading off and just eat the cheese. So basically I paid $5.69 for four ounces of melted mozzarella. Then she insisted on another helping and knowing that money falls from trees, I ordered it. Naturally, she didn’t want it once it arrived. We left it on the table so the uneaten grilled cheese wouldn’t be so lonely.
Tuesday night we went out to dinner for Brayden’s birthday. While ordering the cheese stick appetizer, I turned to Blaine, in a smug and superior manner, and told him to watch how much Kendrie loves them. Yep, you guessed it, she wouldn’t take a single bite. Then it was “noodle soup” three or four times a day, and this morning she wanted Cheerios. Adamantly. And of course we were out. I offered Rice Crispies and Rice Chex, but were either of those good enough? No! The realization that I wasn’t going to pull a magical, hidden box of Cheerios out from behind my ear was enough to bring on the first, full-fledged tantrum.
There are three basic rules that the entire human race should follow in the pursuit of happiness. Rule one, never stand downwind of someone who spits when they talk. Rule two (for ladies only) never assume the toilet seat is down during the middle of the night. And Rule three, NEVER argue with a child on steroids. Even residual steroids. So being the rule-follower that I am, I told Kendrie to give me five minutes to put on my shoes and brush my hair, then we would go to the grocery store and buy the cereal.
As you might have guessed, during that five-minute span my older daughter’s school called to tell me she had a stomach virus and needed to be brought home. So there I am, in the middle of the school parking lot, with one daughter clutching her abdomen and groaning there was no way she could go to the store, and a VERY persistent four-year old who was NOT giving up on those Cheerios! What’s a caring mom to do? Yep, call her husband and make him cancel his lunch plans to drive all the way across town to buy Cheerios. If someone would invent a drive-through grocery store, they would make a mint.
So, the Cheerios bought us an hour or so of good behavior, then we had the inevitable meltdown. Are you ready for this? Kendrie said I wasn’t attending to business in the bathroom (ie., wiping her bottom) fast enough and that she was missing “Max and Ruby”, heaven forbid! She went into complete hysterics that I wasn’t faster, and wound up lying on the hall floor, crying, screaming, and kicking her legs for twenty minutes. Pointing out to her that actually this tantrum was the reason she was missing “Max and Ruby” seemed kind of useless, so I just sat there for a while. Then I called Blaine and held up the phone so he could enjoy the concert as well. (Poor guy can’t catch a break, even at work!) Finally, when the screams were less frantic and I could hear the huge gulps of air in between, with the quivering sobs starting, I picked her up, carried her to the chair, and rocked with her until she was calm again. I’m hoping the ‘screaming baby’ border I added to the site is only temporary. Although getting to rock and cuddle with her afterwards is almost worth enduring the tantrum.
I’m guessing all the steroids will be out of her system just in time for us to start taking them again next Monday. But we’ve bought mini m&m’s for her to practice pill-swallowing and are hopeful we can at least avoid THAT part of the drama.
I probably could have sat back and laughed at all of this (after all, there are days I want to lay on the hall floor and kick my legs, too) but I had something happen today that made everything more realistic. I was filling out some paperwork for insurance, and had copies of her medical records from the oncologist. Being the proactive parent that I am (ie., nosy) I was reading all of her records. There were no surprises in there until I reached the final page, with the physician’s over-all diagnosis and assessment, and there, on the line following the word “Prognosis”, was FAIR. FAIR? That really caused me to catch my breath because of course I’m still holding on to the 80-85 percent survival rate that we are all quoted.
FAIR. Wow, that really hurts.
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY:
I wouldn’t have thought it was possible for Mom to douse me with Purell any more than she already does, but when my sister came home from school with some sort of upset stomach, I think my mom was looking to set up an IV line of antibacterial soap on all of us! Geez, mom, relax!
BEST THING ABOUT HAVING CANCER TODAY:
For once, mom was force-feeding someone else in the family medicine instead of me!
Thursday, February 12, 2004
“A” list of Emotions (aka) 24 Hours in the Life of a Cancer Mom
So here we are, finished with day 4 of Delayed Intensification. Except for one glaring exception, mentioned later, things are going just fine. Kendrie’s visit on Monday was good; spinal fluid clear (sigh of relief) and home at a reasonable hour. Thanks once again to Nadine M. for bringing us dinner (I know you’ve got to be sick of cooking for us!) Kendrie got sick from the meds for the first time, but didn’t let it slow her down. Today’s visit was ok, too; not as bad as I feared regarding the shots. I warned her ahead of time and she certainly wasn’t happy about it, but we suffered through and five minutes later she was fine again.
I’ve been giving you Kendrie’s perspective in recent journal entries, and thought today that I would give you my emotions, instead, regarding this crazy cancer world. Or maybe the world isn’t crazy, but I am. The jury is still out. Beginning last night, and all beginning with the letter “A”.
Kendrie has taken to falling asleep with Blaine and me in our bed. She loves it, we don’t, but we’re suckers the past few months. Then we just take her back to her bed once she’s asleep. So last night we’re laying there giggling, and I said something along the lines of “I would kick you out of this bed right now except I love you so much” and she said, “Do you love me?” and I laughed and said of course. Then she said, in this teeny tiny voice, “Even though I have leukemia?” and it almost took my breath away. So I said, “of course even though you have leukemia” and then she asked, “Even though I’m bald-headed?” Anguish might be too strong of a word, but it’s the closest “A” word I could come up with to describe the feeling in the pit of my stomach, that my child would even be in the situation of having to wonder these things.
Today began with Kendrie and me preparing to leave for Atlanta. She was complaining that her hands were cold (yes, even in Georgia it gets chilly enough for gloves) and I made the comment that I couldn’t find gloves this year that were small enough for her hands, but that NEXT winter, when we would be driving to Atlanta, her hands might be big enough. It was like a punch in the stomach, “oh my God, we’ll still be doing this a year from now.” And then the Part 2 of the 1-2 Punch, “and we’ll still be doing this the winter after THAT” For just a moment, there was a feeling of Abject Misery, at how much this just sucks. Just as quickly though, that was replaced with feeling Ashamed, thinking that I should count myself lucky we have this treatment to try. Thinking of the parents who have lost children to this disease, and how they would probably give anything to be still taking their kids to treatment.
At the clinic today, Kendrie had to be observed for an hour and a half after the shots, to make sure she didn’t have any reaction to the medication. We were hanging out in the playroom, painting, and all of a sudden I hear the clinic staff break into song, “For he’s a jolly good fellow”. Turns out, one of the kids at the clinic was having his last day of chemo today, and then would be officially OT (off-treatment). It’s a really huge deal, and the staff takes photos, has balloons, etc. I sat there for a minute, feeling in Awe for this boy and his family, and all they must have been through to reach this milestone. Can you even imagine the sense of Accomplishment that must come with that? And I’ll admit I felt A Little Bit Envious, wishing we were at the end of treatment, also.
Kendrie was sort of limping around the clinic, holding her thighs, and another mom looked over and said sympathetically, “did she get her Peg shots today?” I can’t tell you the sense of Affinity I felt to this woman, an Alliance of sorts, as we sat and compared stories. I have a fabulous online support group, and friends and family all over the country who care about us and are wonderful. But this was the first time I had sat down, face to face, with someone who was going through the exact same thing. It was a real pick-me-up when I needed one.
I also felt Affected as she told me about her brother who died from leukemia some 40-odd years ago. Given one shot of vincristine at the time of diagnosis and sent home with a prescription for steroids-- it makes my stomach ache to think how leukemia was a death sentence years ago, and makes me feel such immense Appreciation at how far research and treatment have come, for kids like Kendrie, who now have a fighting chance.
Then, the journey home. Let me say first of all that I feel Amazement for all the people who drive daily in the Atlanta rush hour traffic and haven’t suffered an Aneurysm, because I sure thought I was going to.
There was the feeling of Aggravation, when Kendrie informed me that NONE of the dvd’s I brought to watch in the van were “good”. Apparently, Spirit, Like Mike, and The Lion King all have issues with the heroes being either orphaned, or somehow separated from their families. Kendrie told me they were all “bad” movies for that reason and would only watch the one other movie I brought, The Sandlot. So we watched it. Four. Times. I used to really like that movie, but after the fourth time in a row, even the hysterical swimming pool scene with Squints and Wendy Pfeffercorn failed to amuse me.
Then, the Annoyance that I felt when Kendrie swore that the scrambled eggs she got at IHOP for dinner were manna from Heaven and her life would be over if she didn’t get a second helping. So, being the good mom that I am, I flag down the waitress and order another scrambled egg, only to have Kendrie take one bite and tell me she was full. I don’t think this is a cancer issue as much as it is a 4-yr old issue, but it got on my nerves just the same.
And, what day would be complete without a rousing bout of Anger. It’s probably very un-PC for me to admit that I got angry with my Cancer-kid, and DFACS will most likely show up on my doorstep tomorrow morning for putting this out in public, but tonight’s decadron episode very likely made my “Top 5 All Time Most Irrationally Angry At My Kids”--list. We started our steroid pulse on Monday and I was prepared for the increased appetite and mood swings, neither of which have happened yet. What I was NOT prepared for was her completely balking at taking the damn meds! A wise parent once told me you cannot force a child to eat, sleep, or poop. Let me just add “take steroids” to that list.
It took Blaine and me (are you ready for this?) an HOUR and FORTY-FIVE MINUTES to get one stinking pill down her tonight. Her resistance has gotten worse each dose, but tonight’s was over the top. The first half hour was her pursing her lips, holding her hands over her mouth and shaking her head. She was so wound up, crying and fussing and fighting and thrashing, that when we finally got it down her, she threw it right back up. And the next time. AND THE NEXT. How do you explain to a 4-yr old that skipping a dose is NOT an option? We crushed the pill, we tried the pill whole, we used applesauce, yogurt, pudding and kool-aide. There was bribery, pleading, tears, whining, begging, threatening – all to no avail. Then Blaine tried logic and reasoning – who was he kidding? Finally we got her to swallow a pill and not vomit it back up. Thank goodness, since she was running out of clean pajamas!
So 11:30 pm saw me headed to the grocery store, naturally, in the rain. You have to understand how wound up I am at this point. Angry at Kendrie, angry at Blaine (don’t all Ugly-Parenting moments lead to Ugly-Marital moments as well?) angry at cancer in general. I get to Kroger, and every single buggy is outside, in the rain, soaking wet. I say to the lonely cashier, “don’t you have any dry carts?” and he replies, in a brilliant, thoughtful, the-customer-is-always-right sort of way, “No”. I completely lost it. Huffing and puffing and stomping about, making very loud comments like “isn’t THAT great customer service, that I have to go out in the rain to get my own damn cart!” and then I make a big show of bringing it inside and pushing it over to the restrooms, ripping half an entire roll of paper towels off the wall and drying off my cart, all the while making my displeasure known. Of course, a few minutes later I realize what an Asshole I’ve been and hide for a while in the produce section behind a display of oranges, hoping that particular cashier will be off-duty soon and someone else will check me out. But alas, I had to show my face again. So Midnight-Cashier-Man at the Kroger on Watson Blvd, if you are by some chance reading this, my most sincere Apology.
Ah, what a day I’ve had. But you know? I actually feel better getting it all off my chest .... so thanks!
Hope you all have a wonderful holiday weekend, and Happy Valentines Day! Love, Kristie
##################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Well, it’s a tossup. Five hours in the van, plus I had two strange women coming at my legs with needles which wasn’t much fun, and two insane parents force-feeding me medication until I threw up all evening. Take your pick, they all pretty much sucked. (can I say sucked?)
BEST THING ABOUT HAVING CANCER TODAY: Not much.
I’ve been giving you Kendrie’s perspective in recent journal entries, and thought today that I would give you my emotions, instead, regarding this crazy cancer world. Or maybe the world isn’t crazy, but I am. The jury is still out. Beginning last night, and all beginning with the letter “A”.
Kendrie has taken to falling asleep with Blaine and me in our bed. She loves it, we don’t, but we’re suckers the past few months. Then we just take her back to her bed once she’s asleep. So last night we’re laying there giggling, and I said something along the lines of “I would kick you out of this bed right now except I love you so much” and she said, “Do you love me?” and I laughed and said of course. Then she said, in this teeny tiny voice, “Even though I have leukemia?” and it almost took my breath away. So I said, “of course even though you have leukemia” and then she asked, “Even though I’m bald-headed?” Anguish might be too strong of a word, but it’s the closest “A” word I could come up with to describe the feeling in the pit of my stomach, that my child would even be in the situation of having to wonder these things.
Today began with Kendrie and me preparing to leave for Atlanta. She was complaining that her hands were cold (yes, even in Georgia it gets chilly enough for gloves) and I made the comment that I couldn’t find gloves this year that were small enough for her hands, but that NEXT winter, when we would be driving to Atlanta, her hands might be big enough. It was like a punch in the stomach, “oh my God, we’ll still be doing this a year from now.” And then the Part 2 of the 1-2 Punch, “and we’ll still be doing this the winter after THAT” For just a moment, there was a feeling of Abject Misery, at how much this just sucks. Just as quickly though, that was replaced with feeling Ashamed, thinking that I should count myself lucky we have this treatment to try. Thinking of the parents who have lost children to this disease, and how they would probably give anything to be still taking their kids to treatment.
At the clinic today, Kendrie had to be observed for an hour and a half after the shots, to make sure she didn’t have any reaction to the medication. We were hanging out in the playroom, painting, and all of a sudden I hear the clinic staff break into song, “For he’s a jolly good fellow”. Turns out, one of the kids at the clinic was having his last day of chemo today, and then would be officially OT (off-treatment). It’s a really huge deal, and the staff takes photos, has balloons, etc. I sat there for a minute, feeling in Awe for this boy and his family, and all they must have been through to reach this milestone. Can you even imagine the sense of Accomplishment that must come with that? And I’ll admit I felt A Little Bit Envious, wishing we were at the end of treatment, also.
Kendrie was sort of limping around the clinic, holding her thighs, and another mom looked over and said sympathetically, “did she get her Peg shots today?” I can’t tell you the sense of Affinity I felt to this woman, an Alliance of sorts, as we sat and compared stories. I have a fabulous online support group, and friends and family all over the country who care about us and are wonderful. But this was the first time I had sat down, face to face, with someone who was going through the exact same thing. It was a real pick-me-up when I needed one.
I also felt Affected as she told me about her brother who died from leukemia some 40-odd years ago. Given one shot of vincristine at the time of diagnosis and sent home with a prescription for steroids-- it makes my stomach ache to think how leukemia was a death sentence years ago, and makes me feel such immense Appreciation at how far research and treatment have come, for kids like Kendrie, who now have a fighting chance.
Then, the journey home. Let me say first of all that I feel Amazement for all the people who drive daily in the Atlanta rush hour traffic and haven’t suffered an Aneurysm, because I sure thought I was going to.
There was the feeling of Aggravation, when Kendrie informed me that NONE of the dvd’s I brought to watch in the van were “good”. Apparently, Spirit, Like Mike, and The Lion King all have issues with the heroes being either orphaned, or somehow separated from their families. Kendrie told me they were all “bad” movies for that reason and would only watch the one other movie I brought, The Sandlot. So we watched it. Four. Times. I used to really like that movie, but after the fourth time in a row, even the hysterical swimming pool scene with Squints and Wendy Pfeffercorn failed to amuse me.
Then, the Annoyance that I felt when Kendrie swore that the scrambled eggs she got at IHOP for dinner were manna from Heaven and her life would be over if she didn’t get a second helping. So, being the good mom that I am, I flag down the waitress and order another scrambled egg, only to have Kendrie take one bite and tell me she was full. I don’t think this is a cancer issue as much as it is a 4-yr old issue, but it got on my nerves just the same.
And, what day would be complete without a rousing bout of Anger. It’s probably very un-PC for me to admit that I got angry with my Cancer-kid, and DFACS will most likely show up on my doorstep tomorrow morning for putting this out in public, but tonight’s decadron episode very likely made my “Top 5 All Time Most Irrationally Angry At My Kids”--list. We started our steroid pulse on Monday and I was prepared for the increased appetite and mood swings, neither of which have happened yet. What I was NOT prepared for was her completely balking at taking the damn meds! A wise parent once told me you cannot force a child to eat, sleep, or poop. Let me just add “take steroids” to that list.
It took Blaine and me (are you ready for this?) an HOUR and FORTY-FIVE MINUTES to get one stinking pill down her tonight. Her resistance has gotten worse each dose, but tonight’s was over the top. The first half hour was her pursing her lips, holding her hands over her mouth and shaking her head. She was so wound up, crying and fussing and fighting and thrashing, that when we finally got it down her, she threw it right back up. And the next time. AND THE NEXT. How do you explain to a 4-yr old that skipping a dose is NOT an option? We crushed the pill, we tried the pill whole, we used applesauce, yogurt, pudding and kool-aide. There was bribery, pleading, tears, whining, begging, threatening – all to no avail. Then Blaine tried logic and reasoning – who was he kidding? Finally we got her to swallow a pill and not vomit it back up. Thank goodness, since she was running out of clean pajamas!
So 11:30 pm saw me headed to the grocery store, naturally, in the rain. You have to understand how wound up I am at this point. Angry at Kendrie, angry at Blaine (don’t all Ugly-Parenting moments lead to Ugly-Marital moments as well?) angry at cancer in general. I get to Kroger, and every single buggy is outside, in the rain, soaking wet. I say to the lonely cashier, “don’t you have any dry carts?” and he replies, in a brilliant, thoughtful, the-customer-is-always-right sort of way, “No”. I completely lost it. Huffing and puffing and stomping about, making very loud comments like “isn’t THAT great customer service, that I have to go out in the rain to get my own damn cart!” and then I make a big show of bringing it inside and pushing it over to the restrooms, ripping half an entire roll of paper towels off the wall and drying off my cart, all the while making my displeasure known. Of course, a few minutes later I realize what an Asshole I’ve been and hide for a while in the produce section behind a display of oranges, hoping that particular cashier will be off-duty soon and someone else will check me out. But alas, I had to show my face again. So Midnight-Cashier-Man at the Kroger on Watson Blvd, if you are by some chance reading this, my most sincere Apology.
Ah, what a day I’ve had. But you know? I actually feel better getting it all off my chest .... so thanks!
Hope you all have a wonderful holiday weekend, and Happy Valentines Day! Love, Kristie
##################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Well, it’s a tossup. Five hours in the van, plus I had two strange women coming at my legs with needles which wasn’t much fun, and two insane parents force-feeding me medication until I threw up all evening. Take your pick, they all pretty much sucked. (can I say sucked?)
BEST THING ABOUT HAVING CANCER TODAY: Not much.
Saturday, February 07, 2004
Looking at Delayed Intensification
Turning sixteen is a rite of passage in America, at least for those of us who are able to get our drivers licenses and start driving. I think my mom was just sick and tired of hauling me to all my extra-curricular activities, but she was so excited for me to get my license she let me skip first period and drove me there herself. And just as significant as the license, is the “FIRST CAR”. A lucky few are given cars as gifts, many “inherit” their parents’ cars, and some of us buy our own. I was in the third category and had definite ideas about the “ride” I wanted. Unfortunately I also had a budget of only $500 hard-earned babysitting dollars, so the car of which I dreamed, and the car which I got, were two totally different things. I dreamed of a classic Mustang, or maybe a little red sports car; stylish, smooth riding, and the envy of many.
What I got was a 1973 green Maverick with tan shag carpeting and more than its share of dents and dings. No air conditioning, no heat, and no power anything. Pleather seats, that were freezing cold in the winter (no heat) and that would melt the flesh off the backs of your thighs in the summer (no a/c). One winter morning I drove my sister to the orthodontist and fresh out of the shower, her hair froze. This is the same sister who would ask for a ride to school then demand that I park a block away so no one would see her. She nicknamed the car “Speedy” and it stuck. The first time I drove to my boyfriend’s house to take him somewhere, he insisted on wearing his football helmet while he rode in the passenger seat. Whether that was a commentary on my newly acquired driving skills or the car, I don’t know, but it was pretty funny (after I pretended to be annoyed, of course.)
Obviously, when it came to Speedy, there was a lot to be desired in the luxury and amenity department. But you know what? That little car got me where I needed to go. Maybe it wasn’t the smoothest ride in town, or the most beautiful, but with only an occasional battery jump needed, I always made it to my destination. Now, hold on just a minute through the following medical information, and I’m going to segue into an analogy so brilliant, it will be the water-cooler talk of the nation this Monday. (ok, maybe not *that* brilliant, but it’s something new to discuss besides the tiresome Janet Jackson breast-baring episode.)
Kendrie begins her Delayed Intensification phase on Monday, emphasis on “intense”. Its eight weeks of treatment with repeats of some of the earlier drugs, and also some new drugs. Most excitedly, steroids again! Yippee! (I hope the Kraft Mac & Cheese workers are ready to put in their overtime, getting all those little blue boxes delivered to our house.) She’ll begin on Monday, with another spinal tap, plus a bunch of new IV medicines, and the Dex (can’t forget the DEX!) then we go back up to Atlanta on Wednesday for her to receive two chemo S-H-O-T-S (shhhhhh! I don’t even want her to hear me type it out on the keyboard!) There will be oral drugs, IV drugs, drugs in her spinal fluid; heck, *I* even get to give her shots this time around, does the fun never end???
DI is a pretty harsh phase and it’s fairly common for kids to have increased side effects from all these meds. Any hair that has started growing back usually falls out again, kids can feel crappy and achy from the steroids, can have reactions to the shots, fevers, and often suffer low blood counts – which puts them at greater risk for infections and the need for blood and/or platelet transfusions. Of course we’re hoping Kendrie does as well this phase as she has so far, but also trying to prepare ourselves for the possibility of a rough couple of weeks ahead.
(Here comes my brilliant analogy)
You know what’s important, though? The destination, not the ride. Our final goal is a town called “Curesville” and if it takes riding in a beat up 1973 Maverick called “Delayed Intensification” to get us there, so be it. Sure, I’d prefer our ride through childhood be smooth and easy, but for now, it’s not. So, we’ll put up with a few dents and dings along the way, strap on our football helmets, try to avoid the potholes as best we can, and manage our way through the next eight weeks. As long as we arrive, that’s all we care about.
(So that’s the analogy. I’ll concede it wasn’t "brilliant", and settle for “clever”. OK, let’s be honest, if you’re even still reading at this point, then I’m thrilled!)
Thanks so much to Lisa J. of Lorton, VA, the latest person to make her way through the CB List of 100! Those messages cheer up a lot of people! And thanks also to Julie H, of Annandale, VA, my good friend and fellow Survivor addict, for going this week and donating blood. It makes such a huge difference!
Thoughts and prayers going out to the families of Conor Ford and Alex Haigler. These brave boys’ fights touched my heart and this past week it broke a little for each of their families.
Thanks for checking in on Kendrie’s website and thanks especially for signing the guestbook. She gets a real kick out of sitting in my lap and having me read the messages to her, so thanks for taking the time, as often as you’d like!
Best wishes, Kristie
######################################################
KENDRIE’S PERSPECTIVE:
TOP FIVE WORST THINGS ABOUT INTERIM MAINTENANCE:
1. Doses of oral medication to date: 243
2. Spinal taps to date: 8
3. IV Chemo to date: 10
4. Shots to date: 2
5. Bone marrow aspirations to date: 5
TOP FIVE BEST THINGS ABOUT INTERIM MAINTENANCE:
1. Blood counts stayed high!
2. Finally lost all the weight I gained from the steroids at the beginning!
3. No fevers or infections or ER visits the entire phase!
4. I felt good enough to run around like a hooligan the entire time!
5. I AM STILL IN REMISSION!
What I got was a 1973 green Maverick with tan shag carpeting and more than its share of dents and dings. No air conditioning, no heat, and no power anything. Pleather seats, that were freezing cold in the winter (no heat) and that would melt the flesh off the backs of your thighs in the summer (no a/c). One winter morning I drove my sister to the orthodontist and fresh out of the shower, her hair froze. This is the same sister who would ask for a ride to school then demand that I park a block away so no one would see her. She nicknamed the car “Speedy” and it stuck. The first time I drove to my boyfriend’s house to take him somewhere, he insisted on wearing his football helmet while he rode in the passenger seat. Whether that was a commentary on my newly acquired driving skills or the car, I don’t know, but it was pretty funny (after I pretended to be annoyed, of course.)
Obviously, when it came to Speedy, there was a lot to be desired in the luxury and amenity department. But you know what? That little car got me where I needed to go. Maybe it wasn’t the smoothest ride in town, or the most beautiful, but with only an occasional battery jump needed, I always made it to my destination. Now, hold on just a minute through the following medical information, and I’m going to segue into an analogy so brilliant, it will be the water-cooler talk of the nation this Monday. (ok, maybe not *that* brilliant, but it’s something new to discuss besides the tiresome Janet Jackson breast-baring episode.)
Kendrie begins her Delayed Intensification phase on Monday, emphasis on “intense”. Its eight weeks of treatment with repeats of some of the earlier drugs, and also some new drugs. Most excitedly, steroids again! Yippee! (I hope the Kraft Mac & Cheese workers are ready to put in their overtime, getting all those little blue boxes delivered to our house.) She’ll begin on Monday, with another spinal tap, plus a bunch of new IV medicines, and the Dex (can’t forget the DEX!) then we go back up to Atlanta on Wednesday for her to receive two chemo S-H-O-T-S (shhhhhh! I don’t even want her to hear me type it out on the keyboard!) There will be oral drugs, IV drugs, drugs in her spinal fluid; heck, *I* even get to give her shots this time around, does the fun never end???
DI is a pretty harsh phase and it’s fairly common for kids to have increased side effects from all these meds. Any hair that has started growing back usually falls out again, kids can feel crappy and achy from the steroids, can have reactions to the shots, fevers, and often suffer low blood counts – which puts them at greater risk for infections and the need for blood and/or platelet transfusions. Of course we’re hoping Kendrie does as well this phase as she has so far, but also trying to prepare ourselves for the possibility of a rough couple of weeks ahead.
(Here comes my brilliant analogy)
You know what’s important, though? The destination, not the ride. Our final goal is a town called “Curesville” and if it takes riding in a beat up 1973 Maverick called “Delayed Intensification” to get us there, so be it. Sure, I’d prefer our ride through childhood be smooth and easy, but for now, it’s not. So, we’ll put up with a few dents and dings along the way, strap on our football helmets, try to avoid the potholes as best we can, and manage our way through the next eight weeks. As long as we arrive, that’s all we care about.
(So that’s the analogy. I’ll concede it wasn’t "brilliant", and settle for “clever”. OK, let’s be honest, if you’re even still reading at this point, then I’m thrilled!)
Thanks so much to Lisa J. of Lorton, VA, the latest person to make her way through the CB List of 100! Those messages cheer up a lot of people! And thanks also to Julie H, of Annandale, VA, my good friend and fellow Survivor addict, for going this week and donating blood. It makes such a huge difference!
Thoughts and prayers going out to the families of Conor Ford and Alex Haigler. These brave boys’ fights touched my heart and this past week it broke a little for each of their families.
Thanks for checking in on Kendrie’s website and thanks especially for signing the guestbook. She gets a real kick out of sitting in my lap and having me read the messages to her, so thanks for taking the time, as often as you’d like!
Best wishes, Kristie
######################################################
KENDRIE’S PERSPECTIVE:
TOP FIVE WORST THINGS ABOUT INTERIM MAINTENANCE:
1. Doses of oral medication to date: 243
2. Spinal taps to date: 8
3. IV Chemo to date: 10
4. Shots to date: 2
5. Bone marrow aspirations to date: 5
TOP FIVE BEST THINGS ABOUT INTERIM MAINTENANCE:
1. Blood counts stayed high!
2. Finally lost all the weight I gained from the steroids at the beginning!
3. No fevers or infections or ER visits the entire phase!
4. I felt good enough to run around like a hooligan the entire time!
5. I AM STILL IN REMISSION!
Monday, February 02, 2004
First Interim Maintenance Phase; week #8 of 8
OK, I am making absolutely no promises that any part of this journal entry will make sense because I’m typing it at 2 am (all you die-hard CB surfers will empathize) after watching the Super Bowl and All Star Survivor premiere. Needless to say, I'm pretty hopped up on Diet Dr. Pepper and cocktail meatballs. I’m going on record now as stating I want either Rupert or Rudy to win Survivor. (although the previews from next week have me a little concerned about Rudy’s physical health!) A funny aside: before the Super Bowl, Beyonce sang the national anthem. I’m not real familiar with her music (I’m too old to be "in the know" regarding current music; give me a good 80’s station any day!) but I do know she’s a Grammy winner/nominee and a very famous, popular singer. After she finished the anthem, Brayden, my soon-to-be seven year old, turned to me and said, “Wow, mom, she should be on American Idol!” Do you think that’s a sign I watch too much reality tv???
Anyway, I have the results from my 100-CB site challenge, and am happy to know that so many of you finished signing all the guestbooks! I know many more people were making the rounds … whether you signed all 100, or even just one, thank you so much for making a difference! Following is the list of people who let me know they completed all 100! (if you completed it, be sure to tell me so I can give you props!)
Jennifer C. from Eugene, OR
Wendy W. from Winder, GA
Caleb's mom Debbie L. from Dickson, TN
Fisher's mom Carolyn C. from Chesapeake, VA
Heather M from Mississauga, ON, Canada
Tracy M. from Windsor, ON, Canada
I also received quiz answers from Tiffany B. of Grand Prairie, TX and Jennifer C. from Eugene, OR, but TEAM CANADA answered the most quiz answers correctly! Congratulations to TEAM CANADA members; Tracey H. from Calgary; Heather M. from Mississauga, and Terry J. aka Big Daddy to Julianna Banana from Manitoba. (just reading all those Canadian town names gives me the urge to strap on some ice skates and pick up a hockey stick! Unfortunately, the last time we went ice skating, my husband-to-be broke my bridesmaid’s ankle, so maybe I’ll stick to something more up my athletic alley --- like needlepoint.)
So, Fisher, Caleb and Julianna, be on the lookout from Caring Bridge for a notice regarding the donations I will be making in your honor. I received a great amount of positive feedback from so many about the challenge, and I hope all of you who took the time to participate, even if you couldn’t get through them all, enjoyed meeting so many wonderful kids. (and a few grown ups, too!)
If you finished the challenge and have any nerve endings still left in your fingers, here is a great link with dozens (hundreds!) of sites you can visit: Share The Love Just go to the site and click on any of the links; kids, angels, needs tlc, etc. You really have the power to brighten up someone's day in just a minute or two!
OK, quick correction: It was our friend LISA who rolled up her sleeve and donated blood, then sent Kendrie the t-shirt in the picture directly above. I gave credit to Gary (Lisa’s husband) but he is too busy packing travel-sized toiletries in his rollaway luggage for the all-expense paid vacation Uncle Sam is sending him on, to an undisclosed location (that rhymes with Hi-Rack) to be able to donate himself for a while. So thank you, LISA! And Gary, our friend, be safe.
Also, see in that same picture the cool tattoos on Kendrie’s hands? They were sent in a care package by a group called SuperSibs! that honors and supports the brothers and sisters of children diagnosed with cancer. In our house, of course, that would be Brayden and Kellen. They have been pretty good sports about all the extra attention Kendrie has gotten and they realize that the majority of cards that came in the mail when she was first diagnosed were naturally for her. But I wanted them to have something special, too, so I signed them up with SuperSibs! So the other day their introductory packets arrive, with letters, ribbons, tattoos, certificates, etc. and can you guess what happened? I made such a big deal out of how special this was, just for them, because they are important, too, blah blah blah. Then, I took Brayden to get her haircut and while we were gone, Blaine (aka Man of the House Who Should Really Check With Woman of the House More Often) gave the tattoos to Kendrie to put on! Brayden gets back from her haircut and is like, “why does Kendrie have my tattoo on? I thought that was something special just for ME, and NOT for her??? It’s not fair!!! Why does she get everything???” and Blaine is looking at me like, “what? What did I do?” (sigh)
Thanks for checking the site, and especially thanks for signing the guestbook. I hope you all have a great week!
Take care, Kristie
##################################################
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: We went to the circus today, and my mom kept pulling out the Purell, every five seconds I’m telling you, and then wouldn’t let me finish my cotton candy after I dropped it on the floor. I guess the 10-second rule doesn’t apply if you have leukemia!
BEST PART ABOUT HAVING CANCER TODAY: It was cold in the big coliseum place where they had the circus, but I already had on my Kim Possible stocking hat that my over-protective mom made me wear. (Don’t tell her, but I was glad I had it on ‘cause otherwise my little bald head would have been cold!)
Anyway, I have the results from my 100-CB site challenge, and am happy to know that so many of you finished signing all the guestbooks! I know many more people were making the rounds … whether you signed all 100, or even just one, thank you so much for making a difference! Following is the list of people who let me know they completed all 100! (if you completed it, be sure to tell me so I can give you props!)
Jennifer C. from Eugene, OR
Wendy W. from Winder, GA
Caleb's mom Debbie L. from Dickson, TN
Fisher's mom Carolyn C. from Chesapeake, VA
Heather M from Mississauga, ON, Canada
Tracy M. from Windsor, ON, Canada
I also received quiz answers from Tiffany B. of Grand Prairie, TX and Jennifer C. from Eugene, OR, but TEAM CANADA answered the most quiz answers correctly! Congratulations to TEAM CANADA members; Tracey H. from Calgary; Heather M. from Mississauga, and Terry J. aka Big Daddy to Julianna Banana from Manitoba. (just reading all those Canadian town names gives me the urge to strap on some ice skates and pick up a hockey stick! Unfortunately, the last time we went ice skating, my husband-to-be broke my bridesmaid’s ankle, so maybe I’ll stick to something more up my athletic alley --- like needlepoint.)
So, Fisher, Caleb and Julianna, be on the lookout from Caring Bridge for a notice regarding the donations I will be making in your honor. I received a great amount of positive feedback from so many about the challenge, and I hope all of you who took the time to participate, even if you couldn’t get through them all, enjoyed meeting so many wonderful kids. (and a few grown ups, too!)
If you finished the challenge and have any nerve endings still left in your fingers, here is a great link with dozens (hundreds!) of sites you can visit: Share The Love Just go to the site and click on any of the links; kids, angels, needs tlc, etc. You really have the power to brighten up someone's day in just a minute or two!
OK, quick correction: It was our friend LISA who rolled up her sleeve and donated blood, then sent Kendrie the t-shirt in the picture directly above. I gave credit to Gary (Lisa’s husband) but he is too busy packing travel-sized toiletries in his rollaway luggage for the all-expense paid vacation Uncle Sam is sending him on, to an undisclosed location (that rhymes with Hi-Rack) to be able to donate himself for a while. So thank you, LISA! And Gary, our friend, be safe.
Also, see in that same picture the cool tattoos on Kendrie’s hands? They were sent in a care package by a group called SuperSibs! that honors and supports the brothers and sisters of children diagnosed with cancer. In our house, of course, that would be Brayden and Kellen. They have been pretty good sports about all the extra attention Kendrie has gotten and they realize that the majority of cards that came in the mail when she was first diagnosed were naturally for her. But I wanted them to have something special, too, so I signed them up with SuperSibs! So the other day their introductory packets arrive, with letters, ribbons, tattoos, certificates, etc. and can you guess what happened? I made such a big deal out of how special this was, just for them, because they are important, too, blah blah blah. Then, I took Brayden to get her haircut and while we were gone, Blaine (aka Man of the House Who Should Really Check With Woman of the House More Often) gave the tattoos to Kendrie to put on! Brayden gets back from her haircut and is like, “why does Kendrie have my tattoo on? I thought that was something special just for ME, and NOT for her??? It’s not fair!!! Why does she get everything???” and Blaine is looking at me like, “what? What did I do?” (sigh)
Thanks for checking the site, and especially thanks for signing the guestbook. I hope you all have a great week!
Take care, Kristie
##################################################
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: We went to the circus today, and my mom kept pulling out the Purell, every five seconds I’m telling you, and then wouldn’t let me finish my cotton candy after I dropped it on the floor. I guess the 10-second rule doesn’t apply if you have leukemia!
BEST PART ABOUT HAVING CANCER TODAY: It was cold in the big coliseum place where they had the circus, but I already had on my Kim Possible stocking hat that my over-protective mom made me wear. (Don’t tell her, but I was glad I had it on ‘cause otherwise my little bald head would have been cold!)
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