aka Happy Mother’s Day
You know that cartoon, Family Circus, about the family with four little kids and every Fathers Day one of the little kids “draws” the cartoon to give his dad the day off? I’ve decided that today, for the first Mother’s Day I am spending as a “cancer mom”, I’m giving myself the day off and want to let some of the wise, profound, and occasionally funny things that kids say fill the journal entry instead.
Before I pass the baton, however, I’d like to wish all of you a Happy Mother’s Day. First to my mom Betty, who proved again last week that even at the age of “achooooo—two!’, she’ll still drop everything to help one of her kids in need. My sister Kelly and I, and Blaine and Cliff by marriage, have all been very, very blessed. Second, to all the moms out there spending this day in the hospital with their sick children, or sitting by the grave of a child, my best wishes and condolences. And to all the moms whose kids are home and healthy, give them an extra hug today and thank God for the noses and tushes that need wiping, the laundry and homework that need done, the taxi-cabbing, cooking and cleaning that are your life. Really, what better life is there? None.
Zachary Finestone is a Caringbridge site I have been following for months. Normally written by his dad Scott, whose sense of humor is twisted, wrong, and highly enjoyable, go to the May 5 journal entry for the essay by Zach titled, “Why I Hate Cancer.” I think Zach said it better than most adults do. Grab a Kleenex before you read this essay ..... but if you go back through the journal entries and read some of Scott’s older entries, grab a Depends.
I know many of you are closely following the current transplant journey of Spencer Rocket. I especially love the conversation Spencer and his dad had in the May 6 journal entry. Nothing like the honesty of a child, eh???
And for another laugh to go Christopher’s Page and read his poem, “If You Give A Kid On Steroids…..” in the May 6th journal entry. Very, very clever, very, very true!
And out of the mouth of the Mom of a Babe (fitting for Mother’s Day, don’t you think?) I encourage you to go to Katie’s Page and read her mom Sue’s journal entry for April 27th, discussing the “stinky cheese factor” of having a kid with cancer. Sue really hit the nail on the head for how I feel many days with Kendrie.
Sue also gave me permission to reprint a section of her journal where she explains (in much better terms than I am able) the clinical definition of “remission” and why kids in remission still need chemotherapy:
“I had a conversation today that I have had many many times over the last 8 months. Most people do not understand why if Katie is in remission she needs to continue chemotherapy for two more years. Part of that answer is that "clinical remission" is defined as less than 5 percent blasts or cancer cells in the bone marrow and none in the spinal fluid. Remission is based on the technology they had to look at cells way back in the 1940's. In 1940, when they looked through their microscopes they didn't see anymore cancer cells and they thought the cancer was gone. With modern technology they can find one cancer cell amongst thousands of normal cells. We are told that blood cancer starts with one bad cell reproducing - so in theory you only need a single cancer cell to survive for the cancer to grow back. So the answer really is that "clinical remission" is only a baseline to which all patients need to get to proceed to the next stage of treatment - it does not mean the cancer is all gone. (Although that is what we tell Katie - because it seems more hopeful and glass half full kind of thinking is important when dealing with cancer) Presumably 2 more years of pumping chemo into Katie's body will kill off all of the cancer cells in her blood.”
Thanks, Sue, for letting me blatantly plagiarize your page!
Well, I guess that’s it for now. I’m off to sit in front of the tv and eat bon bons on my special day. Kidding, of course --- If you want the truth, I will be hiding, with Blaine’s Mother’s Day Blessing, in my scrapbooking room all day, indulging in my latest favorite craving for beef jerky, and waiting for him to grill out at dinner. Sounds like a pretty fabulous day to me! And sometime in there I’ll manage to squeeze a hug or two out of the three little rugrats who give meaning to my day and allow me to enjoy the blessing of being a Mother. Thank you Brayden, Kellen and Kendrie; I love you, Mom.
Sunday, May 09, 2004
Thursday, May 06, 2004
"It’s a 4-yr old thing!"
Again, what’s with the stupid Family Fun parenting models of laughing, happy, always-joyful families making me feel inadequate!?! Or maybe *I’m* fine, but Kendrie sure as heck has her moments (sometimes unbearably long moments that seem to last all day long!) when she isn’t the smiling, pleasant model-child like the kids in the magazine. (Do you think it matters that the kids in the magazines all have hair? Yes, three cheers for advertisers for putting photos of kids in wheelchairs in magazines, but come one! Let’s see some baldies out there!)
Anyway, since the last time I checked our family tree, there was no actual, hard physical evidence of SATAN sitting on any of the branches, and she hasn’t been on steroids for two months, then I just have to assume “it’s a 4-yr old thing”. Here are a few of the issues with which we have dealt the past few days, which I repeat in this forum just so none of you are surprised when 'the men' show up with a little white jacket for me.
CLOTHES: I gave up a long time ago trying to get Kendrie to wear anything but jeans (or jean shorts) and a t-shirt. Now we’ve just topped off the ensemble with a ball cap and that’s the extent of it. So far, she has been the epitome of “low maintenance” when it comes to fashion. Suddenly, however, the other day, she decided she had an opinion ….. and heaven help us she wouldn’t budge. I bought her a new shirt with a number on the chest (like a sports jersey) and a picture of some kind of sparkly fruit on the back. Obviously, wearing the shirt properly means you can’t see the fruit, no matter how sparkly, so she insisted on wearing the shirt backwards. Fine. Whatever. The problem arose when she said the tag was “itching her neck” and wanted me to cut it out. For some reason this annoyed me and so I said no ….. (will I never learn?) and that upset her. Greatly. I gave in on the hiking boots that she has worn pretty much every day for the past four months, and the super-hero ball caps she insists on …. But something about cutting off that tag so she could wear the shirt backwards just so she could see the sparkly fruit … I don’t know, it just rubbed me wrong. Lord knows I paid for it all day with complaints and tears. Would she even consider turning the shirt around properly??? Heck, no. That was too much work. But she had the energy to whine and cry about the tag for twelve solid hours. Next time I’m just grabbing the scissors.
FOOD: OK, as a special treat, I took her to a local bakery one morning while out running errands. We stood in line, I showed her all the choices, she stated she wanted a *roll* (Kendrie-speak for cheese bagel) “Just like Mom’s”. I double checked, “Just like mine?” and she replied, “Yes, JUST like yours, only fat” (ie., not sliced in half) So I bought two cheese bagels and gave her one. Immediately she said, “I wanted it cut in half”. So I grabbed one of those little flimsy plastic knives and sawed it in half. Then she informs me she doesn’t like cheese bagels. I said, “Kendrie, you said JUST like mine, and mine is cheese” to which she replied, “yes, just like yours, but different.” (sigh) Just so you don’t think I cave to all demands, she did go without a bagel that day.
CONTROL ISSUES: We went to the commissary (military grocery store) on base and I promised her ahead of time that she could ride in one of the special carts with the big-kid seats up front, even though they are 30-feet long and incredibly hard to steer, as anyone who has ever used one of those carts can attest. I normally wind up knocking over more displays and doing more damage than the elderly people in the motorized shopping chairs. Naturally, when we arrived at the commissary, every one of the special carts was already in use by other stay-at-home moms like me. I quickly looked around to see if any of them were close to being finished, and the answer was no … half-full carts all around. So I explained to Kendrie she would have to ride in a regular cart. She was adamant that the little seat up front was for babies and she wanted to ride in the big cart part. I asked where was I supposed to put the groceries? And she said I could push two carts. She refused to get in; I suggested she walk; she said her legs hurt; you know how it goes. I was getting very frustrated until some old man witnessing the entire scene said out loud, “Looks to me like he just needs to walk” --- Rude. If *I* want to be mad at my spoiled rotten brat that’s my business, but people should keep their opinions to themselves in public. The one good thing to come out of it was-- it WAS the first time Kendrie used the phrase I taught her: “I’m not a boy, I’m a girl with cancer!”
MUSIC: OK, this is where it gets bizarre. Riding home after the commissary episode, Kendrie announced she wanted me to sing the “bridge” song. The bridge song??? Yes, the bridge song. So I launch into the most obvious choice, “London Bridge is Falling Down” only to have her slap herself in the forehead, roll her eyes, and say “Not THAT bridge song!” Hmmmm. Just how many bridge songs are there? So I tentatively begin with “Bobbie Jo McAllister jumped off the Tallahassee Bridge” in my best smoky voice karaoke club imitation, all the while thinking “Bobbie Jo? Is that right??? Or is it Billy Joe? What is the rest of that song? Tallahassee Bridge? Waxahachie Bridge??” Kendrie, again, says out loud, “Not THAT bridge song, either!” So I’m really thinking now, bridge, bridge, bridge … what on earth is she talking about and Boom! It comes to me, and I burst out in my best singing voice (the one that Clay Aiken would be jealous of) “Like a BRIDGE over tro-houb-led water …. I will lay you Dooo-ooo—ooo-wnnnnnnn” and I’m telling you, even Simon and Garfunkel could not have done it better. After my grand crescendo of a finale, there is total silence from the back of the van and then I hear Kendrie’s little voice, “what the heck was that?” So, realizing I’m 0 for 3, I tell her I have no idea what bridge song she means, and the entire rest of the drive home she keeps insisting I sing the song. Like if she demands it enough times, the words and tune will just suddenly pop into my head.
What is up with my child???? Does anyone know what the bridge song is? I’ve said all along that our family will need therapy before this whole leukemia thing is over and done with, but now I’m thinking maybe behavior modification therapy, for HER, needs to start sooner rather than later. A friend of mind who shall remain nameless (I don’t want to embarrass you Jadine) was talking about her boys and said she was considering (and I quote) “stapling their little mouths shut” and I’m beginning to think she might be on to something.
Let’s see, what else? We had a clinic appointment today for IV meds; vincristine and methotrexate, plus the IV zofran ahead of time. She also had a spinal tap and received more methotrexate in her spine. An unexpected bonus today was running into our friends Regina and Wild Girl Madie at clinic today. Kendrie and Madie were getting spinals in the new procedure rooms right next to one another and afterwards we went to the park for an impromptu picnic. You should have seen the two of them parading their treasure-box items through the clinic afterwards and showing off – Barbie/Kelly stuff for Madie, and a 4-ft Hulk puzzle for Kendrie. (I’m telling you, she doesn’t have a girly-bone in her whole body!) They were a sight to see and made everyone smile. I did have a terrifying moment at 4:55 this afternoon when our phone rang -- of course my mind immediately leapt to it being the oncologist, calling us at the end of the day to tell us the spinal fluid wasn't clear. Never so glad to hear from a telemarketer in all my life.
Anyway, if you have a few spare minutes, please visit the sites of Spencer Rocket, who just had his transplant yesterday, Cameron, who recently returned home after having his bone marrow transplant with his brother Chad as a donor, and Christopher, whose family is making the decision now about how to treat his recent CNS relapse. As hard as this whole leukemia/chemotherapy crap is, the paths their families are following are even harder and I’m sure they would appreciate the support.
In the meantime, I hope you all have a great weekend!
Love, Kristie
**************************************************
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Getting my port accessed and having a needle stuck in my back. I knew what was coming the minute my mom pulled over on the highway and started putting that magic-cream on my back.
BEST PART ABOUT HAVING CANCER TODAY: That's easy! Having lunch and playing in the park with my sister-friend Madie because she is a little kid like me who has sick blood (just like me!) and we have fun, fun, fun together!!
Anyway, since the last time I checked our family tree, there was no actual, hard physical evidence of SATAN sitting on any of the branches, and she hasn’t been on steroids for two months, then I just have to assume “it’s a 4-yr old thing”. Here are a few of the issues with which we have dealt the past few days, which I repeat in this forum just so none of you are surprised when 'the men' show up with a little white jacket for me.
CLOTHES: I gave up a long time ago trying to get Kendrie to wear anything but jeans (or jean shorts) and a t-shirt. Now we’ve just topped off the ensemble with a ball cap and that’s the extent of it. So far, she has been the epitome of “low maintenance” when it comes to fashion. Suddenly, however, the other day, she decided she had an opinion ….. and heaven help us she wouldn’t budge. I bought her a new shirt with a number on the chest (like a sports jersey) and a picture of some kind of sparkly fruit on the back. Obviously, wearing the shirt properly means you can’t see the fruit, no matter how sparkly, so she insisted on wearing the shirt backwards. Fine. Whatever. The problem arose when she said the tag was “itching her neck” and wanted me to cut it out. For some reason this annoyed me and so I said no ….. (will I never learn?) and that upset her. Greatly. I gave in on the hiking boots that she has worn pretty much every day for the past four months, and the super-hero ball caps she insists on …. But something about cutting off that tag so she could wear the shirt backwards just so she could see the sparkly fruit … I don’t know, it just rubbed me wrong. Lord knows I paid for it all day with complaints and tears. Would she even consider turning the shirt around properly??? Heck, no. That was too much work. But she had the energy to whine and cry about the tag for twelve solid hours. Next time I’m just grabbing the scissors.
FOOD: OK, as a special treat, I took her to a local bakery one morning while out running errands. We stood in line, I showed her all the choices, she stated she wanted a *roll* (Kendrie-speak for cheese bagel) “Just like Mom’s”. I double checked, “Just like mine?” and she replied, “Yes, JUST like yours, only fat” (ie., not sliced in half) So I bought two cheese bagels and gave her one. Immediately she said, “I wanted it cut in half”. So I grabbed one of those little flimsy plastic knives and sawed it in half. Then she informs me she doesn’t like cheese bagels. I said, “Kendrie, you said JUST like mine, and mine is cheese” to which she replied, “yes, just like yours, but different.” (sigh) Just so you don’t think I cave to all demands, she did go without a bagel that day.
CONTROL ISSUES: We went to the commissary (military grocery store) on base and I promised her ahead of time that she could ride in one of the special carts with the big-kid seats up front, even though they are 30-feet long and incredibly hard to steer, as anyone who has ever used one of those carts can attest. I normally wind up knocking over more displays and doing more damage than the elderly people in the motorized shopping chairs. Naturally, when we arrived at the commissary, every one of the special carts was already in use by other stay-at-home moms like me. I quickly looked around to see if any of them were close to being finished, and the answer was no … half-full carts all around. So I explained to Kendrie she would have to ride in a regular cart. She was adamant that the little seat up front was for babies and she wanted to ride in the big cart part. I asked where was I supposed to put the groceries? And she said I could push two carts. She refused to get in; I suggested she walk; she said her legs hurt; you know how it goes. I was getting very frustrated until some old man witnessing the entire scene said out loud, “Looks to me like he just needs to walk” --- Rude. If *I* want to be mad at my spoiled rotten brat that’s my business, but people should keep their opinions to themselves in public. The one good thing to come out of it was-- it WAS the first time Kendrie used the phrase I taught her: “I’m not a boy, I’m a girl with cancer!”
MUSIC: OK, this is where it gets bizarre. Riding home after the commissary episode, Kendrie announced she wanted me to sing the “bridge” song. The bridge song??? Yes, the bridge song. So I launch into the most obvious choice, “London Bridge is Falling Down” only to have her slap herself in the forehead, roll her eyes, and say “Not THAT bridge song!” Hmmmm. Just how many bridge songs are there? So I tentatively begin with “Bobbie Jo McAllister jumped off the Tallahassee Bridge” in my best smoky voice karaoke club imitation, all the while thinking “Bobbie Jo? Is that right??? Or is it Billy Joe? What is the rest of that song? Tallahassee Bridge? Waxahachie Bridge??” Kendrie, again, says out loud, “Not THAT bridge song, either!” So I’m really thinking now, bridge, bridge, bridge … what on earth is she talking about and Boom! It comes to me, and I burst out in my best singing voice (the one that Clay Aiken would be jealous of) “Like a BRIDGE over tro-houb-led water …. I will lay you Dooo-ooo—ooo-wnnnnnnn” and I’m telling you, even Simon and Garfunkel could not have done it better. After my grand crescendo of a finale, there is total silence from the back of the van and then I hear Kendrie’s little voice, “what the heck was that?” So, realizing I’m 0 for 3, I tell her I have no idea what bridge song she means, and the entire rest of the drive home she keeps insisting I sing the song. Like if she demands it enough times, the words and tune will just suddenly pop into my head.
What is up with my child???? Does anyone know what the bridge song is? I’ve said all along that our family will need therapy before this whole leukemia thing is over and done with, but now I’m thinking maybe behavior modification therapy, for HER, needs to start sooner rather than later. A friend of mind who shall remain nameless (I don’t want to embarrass you Jadine) was talking about her boys and said she was considering (and I quote) “stapling their little mouths shut” and I’m beginning to think she might be on to something.
Let’s see, what else? We had a clinic appointment today for IV meds; vincristine and methotrexate, plus the IV zofran ahead of time. She also had a spinal tap and received more methotrexate in her spine. An unexpected bonus today was running into our friends Regina and Wild Girl Madie at clinic today. Kendrie and Madie were getting spinals in the new procedure rooms right next to one another and afterwards we went to the park for an impromptu picnic. You should have seen the two of them parading their treasure-box items through the clinic afterwards and showing off – Barbie/Kelly stuff for Madie, and a 4-ft Hulk puzzle for Kendrie. (I’m telling you, she doesn’t have a girly-bone in her whole body!) They were a sight to see and made everyone smile. I did have a terrifying moment at 4:55 this afternoon when our phone rang -- of course my mind immediately leapt to it being the oncologist, calling us at the end of the day to tell us the spinal fluid wasn't clear. Never so glad to hear from a telemarketer in all my life.
Anyway, if you have a few spare minutes, please visit the sites of Spencer Rocket, who just had his transplant yesterday, Cameron, who recently returned home after having his bone marrow transplant with his brother Chad as a donor, and Christopher, whose family is making the decision now about how to treat his recent CNS relapse. As hard as this whole leukemia/chemotherapy crap is, the paths their families are following are even harder and I’m sure they would appreciate the support.
In the meantime, I hope you all have a great weekend!
Love, Kristie
**************************************************
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Getting my port accessed and having a needle stuck in my back. I knew what was coming the minute my mom pulled over on the highway and started putting that magic-cream on my back.
BEST PART ABOUT HAVING CANCER TODAY: That's easy! Having lunch and playing in the park with my sister-friend Madie because she is a little kid like me who has sick blood (just like me!) and we have fun, fun, fun together!!
Saturday, May 01, 2004
"Home, Safe and Sound, Albeit a Little Black and Blue"
Thanks so much to all of you for your words of support and encouragement for Blaine during his surgery this past week. Again, I don’t have time for a long journal update (Hey! Was that a sigh of relief I heard from someone out there?!) but I wanted to let everyone know the surgery went very well and he is back at home today. We both appreciate the well wishes, a lot.
We drove up Tuesday, he had the surgery on Wednesday, I stuck around until Thursday afternoon trying to “help” him (which somehow loosely translates to digging in the car for spare change so I could sneak to the vending machine downstairs and buy him twenty bazillion cups of coffee despite the nurses insisting he was on a “clear” liquid diet the first two days). Then, Thursday I drove the three hours home because the kids had Field Day scheduled for Friday and heaven forbid I miss an event as exciting and important as the yearly Field Day. Naturally, it goes without saying, Field Day was rained out this year, so Saturday morning (I guess that was today…. It seems so long ago!) I drove back up to Augusta to pick him up and bring him home.
I can’t believe that in my last journal entry about him cutting all his hair off I forgot to mention this great piece of hair-related news: our friend Erin R. ALSO had a pretty substantial haircut last week – donating EIGHT inches to Locks of Love! She looks fabulous and her hair is so thick I know they will be able to help lots of kids with her selfless contribution. Way to go, Erin!
And in the “it’s a small freakin’ world”-category, Blaine’s roommate at the hospital this week was a very nice gentleman whose grand-daughter was diagnosed two years ago, at age 5, with ALL. She relapsed while on treatment and had a BMT, and is now a happy, healthy 7 yr old, doing great. What are the odds, huh? But it’s always encouraging to hear success stories, so we certainly appreciated him sharing with us.
Well, I’m off for the night. My mom is only here for a few more days and I hope to enjoy some “girl” time with her before she goes (Percocet shouldn’t impair his ability to watch all three kids while she and I go to the movies, should it?) and I’ll update again after she leaves.
Hope you all have a fabulous weekend!
Love, Kristie
We drove up Tuesday, he had the surgery on Wednesday, I stuck around until Thursday afternoon trying to “help” him (which somehow loosely translates to digging in the car for spare change so I could sneak to the vending machine downstairs and buy him twenty bazillion cups of coffee despite the nurses insisting he was on a “clear” liquid diet the first two days). Then, Thursday I drove the three hours home because the kids had Field Day scheduled for Friday and heaven forbid I miss an event as exciting and important as the yearly Field Day. Naturally, it goes without saying, Field Day was rained out this year, so Saturday morning (I guess that was today…. It seems so long ago!) I drove back up to Augusta to pick him up and bring him home.
I can’t believe that in my last journal entry about him cutting all his hair off I forgot to mention this great piece of hair-related news: our friend Erin R. ALSO had a pretty substantial haircut last week – donating EIGHT inches to Locks of Love! She looks fabulous and her hair is so thick I know they will be able to help lots of kids with her selfless contribution. Way to go, Erin!
And in the “it’s a small freakin’ world”-category, Blaine’s roommate at the hospital this week was a very nice gentleman whose grand-daughter was diagnosed two years ago, at age 5, with ALL. She relapsed while on treatment and had a BMT, and is now a happy, healthy 7 yr old, doing great. What are the odds, huh? But it’s always encouraging to hear success stories, so we certainly appreciated him sharing with us.
Well, I’m off for the night. My mom is only here for a few more days and I hope to enjoy some “girl” time with her before she goes (Percocet shouldn’t impair his ability to watch all three kids while she and I go to the movies, should it?) and I’ll update again after she leaves.
Hope you all have a fabulous weekend!
Love, Kristie
Monday, April 26, 2004
Hair, Hair, Everywhere. Um, no, never mind.
I’m sorry this journal entry is so short, but we have been out of town the past three weekends and in between packing, unpacking and all the laundry in between, my computer time has been cut brutally short (something I am kicking and screaming about, let me tell you! When did I become so dependent on technology??? It’s a sad state of affairs, I tell you--- but I digress.)
I am currently packing to leave yet again tomorrow for four or five days, so I wanted to pop this journal entry up quickly and ask all of you so inclined to please say a prayer for my husband Blaine as he prepares for surgery on Wednesday. He and I will be traveling to Augusta (about three hours from here, where his doctors are located at Ft. Gordon Military Hospital …. I really should quit bitching about my four-hour drive with Kendrie, since he drives six-hours round trip almost every week!) In case you are not familiar with our story, here is the Reader’s Digest Condensed Version:
***Kendrie's leukemia diagnosis in October of 2003 was actually Part 2 of the "Our Crappy Year" festival. Part 1 took place in March when it was discovered Blaine had a malignant tumor filling up one of his sinus cavities. I won't go into great (ie, boring) detail except to say the surgery to remove the tumor was very invasive and he also had to have quite a bit of facial-structure removed at the same time the surgeons removed the tumor --- cheekbone, gums, teeth, etc. So, one year later, still cancer-free, Blaine prepared for his first reconstructive surgery, to rebuild his cheekbone with bone from his skull.
Knowing full well they would have to shave his head to get to the skull, we made a huge production out of Daddy going "Bald" like Kendrie. Scheduled the appointment with my hairdresser, talked it up with the kids, eagerly awaited the appointment (Kendrie especially was very excited) only to have the surgeon say to Blaine, "What? Shave your head?? We don't do that anymore."
Yikes!!!
But a promise is a promise and being the excellent father that he is, Blaine went ahead with the new 'do. The kids had a blast, especially the part where they got to take helm of the clippers and do a little damage themselves. Personally, I like the new look. The Mohawk I wasn't so crazy about, but overall it's pretty cool. Now let's wait and see if he keeps it, or grows it back out after the surgery!***
So that’s it in a nutshell. Drop us a line in the guestbook and let us know what you think: keep it short, or grow it back out to the long, flowing length that Uncle Sam lets him keep? (ha!)
Many public thanks to Grandma McClung for (once again!) dropping everything and flying out here to stay with the kids.
I hope you all have a great week and I’ll update when we get back later this weekend.
Much love, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
BEST PART ABOUT HAVING CANCER TODAY: My grandma brought me a new copy of "Cheaper By The Dozen" and I got to watch it in the car on my way to my clinic appointment today --- twice!!!
WORST PART ABOUT HAVING CANCER TODAY: I had to share my new dvd with my stinkin' brother and sister when we got home tonight. Boo!
I am currently packing to leave yet again tomorrow for four or five days, so I wanted to pop this journal entry up quickly and ask all of you so inclined to please say a prayer for my husband Blaine as he prepares for surgery on Wednesday. He and I will be traveling to Augusta (about three hours from here, where his doctors are located at Ft. Gordon Military Hospital …. I really should quit bitching about my four-hour drive with Kendrie, since he drives six-hours round trip almost every week!) In case you are not familiar with our story, here is the Reader’s Digest Condensed Version:
***Kendrie's leukemia diagnosis in October of 2003 was actually Part 2 of the "Our Crappy Year" festival. Part 1 took place in March when it was discovered Blaine had a malignant tumor filling up one of his sinus cavities. I won't go into great (ie, boring) detail except to say the surgery to remove the tumor was very invasive and he also had to have quite a bit of facial-structure removed at the same time the surgeons removed the tumor --- cheekbone, gums, teeth, etc. So, one year later, still cancer-free, Blaine prepared for his first reconstructive surgery, to rebuild his cheekbone with bone from his skull.
Knowing full well they would have to shave his head to get to the skull, we made a huge production out of Daddy going "Bald" like Kendrie. Scheduled the appointment with my hairdresser, talked it up with the kids, eagerly awaited the appointment (Kendrie especially was very excited) only to have the surgeon say to Blaine, "What? Shave your head?? We don't do that anymore."
Yikes!!!
But a promise is a promise and being the excellent father that he is, Blaine went ahead with the new 'do. The kids had a blast, especially the part where they got to take helm of the clippers and do a little damage themselves. Personally, I like the new look. The Mohawk I wasn't so crazy about, but overall it's pretty cool. Now let's wait and see if he keeps it, or grows it back out after the surgery!***
So that’s it in a nutshell. Drop us a line in the guestbook and let us know what you think: keep it short, or grow it back out to the long, flowing length that Uncle Sam lets him keep? (ha!)
Many public thanks to Grandma McClung for (once again!) dropping everything and flying out here to stay with the kids.
I hope you all have a great week and I’ll update when we get back later this weekend.
Much love, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
BEST PART ABOUT HAVING CANCER TODAY: My grandma brought me a new copy of "Cheaper By The Dozen" and I got to watch it in the car on my way to my clinic appointment today --- twice!!!
WORST PART ABOUT HAVING CANCER TODAY: I had to share my new dvd with my stinkin' brother and sister when we got home tonight. Boo!
Wednesday, April 21, 2004
“Makin’ Lemonade!”
Week #3 of IM #2
OK, let me be the first to say cancer pretty much stinks and no one wants to be here voluntarily. But you know what they say about when life hands you lemons ….. well, to be sure, Country Time ain’t got nothing on us! We are making lemonade, baby!
After our fun (albeit cold, and no thanks to my Canadian friends for mocking my pain) trip to DC for Easter, we had two more fun, cancer-related events happen this past weekend. Who knew that a diagnosis of leukemia would be such a boost for our sagging social life?!?
First, on Friday, we attended the ribbon-cutting ceremony for the brand spankin’ new AFLAC Cancer and Blood Disorders Service Outpatient Clinic at Children’s Healthcare of Atlanta at Scottish Rite. (Whew, what a mouthful!) While the staff has been fabulous since Day One of Kendrie’s diagnosis, they were falling all over each other in the old, cramped, crowded clinic. Now, with 23,000 square feet of space, funded in part by a $2.5 million gift from AFLAC, well, I don’t know that we’ll actually *look forward* to chemo, but let’s just say we’ll be riding in the Rolls Royce of Cancer Centers from this point on. It was nice to be a part of the opening day ceremony and see the excitement of the staff who definitely deserve such an amazing facility.
Did I mention that amid the new, immaculate, spotless facilities, with new carpet, new treatment rooms, conference rooms, offices, etc (emphasis on the word NEW) they served a BBQ lunch and one of my family members (not me!) had the dubious distinction of being the first one to spill a plate of BBQ on the brand new carpet? It’s always nice to be remembered for *something* but that wasn’t quite what I had in mind. And for the record, it’s much harder to yell at your kids when there are lots of other adults present.
Then, we left from the ceremony and took part in a Family Camp Weekend at Twin Lakes Camp, sponsored by Camp Sunshine. “Camp Sunshine provides programs throughout the year to give children with cancer the opportunity to enjoy normal activities like swimming, horseback riding, arts and crafts, and making friends!” Now if that sounds like a commercial, it’s because I took it directly off their website. Go there and check out this wonderful organization and all they do for kids with cancer, and the parents and siblings of kids with cancer.
Before those of you who know me fall over backwards in your chairs at the fact my name and “camping” were mentioned in the same sentence, let me be quick to reassure you that this is MY kind of camping --- private cabins that have heat, a/c, full baths and electricity. The camp is run by volunteers who cook, clean, and facilitate activities for the families that include fishing, boating, archery, panning for gold (my kids’ favorite!) tennis, putt putt, arts & crafts, sports … the list goes on and on. After our weekend in DC (have I mentioned to you guys that it was cold there?) the weather Gods threw us a HUGE bone and it was perfect at Camp Sunshine! Sunny, high 70’s, perfect weather for being outside. In fact, hiking down to the lake I got something suspiciously close to perspiration on my upper lip so I’d say it was almost too warm.
All of the families who attended (around twenty families) have a child either on treatment, or finished with treatment, for a variety of cancers. Talk about a peer group made in Heaven for us! And although the prevalent mood of the camp is FUN, not cancer, it was still a great chance for us to visit with other parents facing the same challenges, fears and frustrations as we are. A special memory for me this weekend was meeting Dustin, one of the counselors at the camp who used to attend as a camper himself. Diagnosed at age 7 with ALL, Dustin is now a college junior who was kind enough to visit with our family, take a special interest in Kendrie, and provide me with a glimpse of what “can be” in our future. Thank you, Dustin, for holding out that special hope for us this weekend … that kids can and are cured of this disease and go on to become kind, caring adults. The kind who now spend their spare time helping other kids with cancer attend camp. Many MANY kudos to the wonderful people who make Camp Sunshine a success.
So, I guess that’s it for us the past few days. I feel a little odd talking about how much fun we are having with all these cancer-related activities. Trust me when I say I’d much rather be sitting at home, watching a boring movie from Blockbuster, complaining that there just isn’t anything to do. You know, the way my life used to be, about six months ago. Oh well (sigh) pass me the lemons … I’ve got some squeezing to do!
Love, Kristie
LIFE LESSONS LEARNED AT CAMP LAST WEEKEND BY OUR FAMILY MEMBERS:
Blaine: Having a massage by a man does not automatically make you gay.
Kristie: Wearing new tennis shoes to camp is a really stupid way to start the weekend.
Brayden: Never go to bed with gum in your mouth. Enough said.
Kellen: Being the kid who actually catches a fish in front of everyone else is a cool thing!
Kendrie: Conga lines are much more fun when your Mom is carrying you! Hey Mom, why are you breathing so hard???
OK, let me be the first to say cancer pretty much stinks and no one wants to be here voluntarily. But you know what they say about when life hands you lemons ….. well, to be sure, Country Time ain’t got nothing on us! We are making lemonade, baby!
After our fun (albeit cold, and no thanks to my Canadian friends for mocking my pain) trip to DC for Easter, we had two more fun, cancer-related events happen this past weekend. Who knew that a diagnosis of leukemia would be such a boost for our sagging social life?!?
First, on Friday, we attended the ribbon-cutting ceremony for the brand spankin’ new AFLAC Cancer and Blood Disorders Service Outpatient Clinic at Children’s Healthcare of Atlanta at Scottish Rite. (Whew, what a mouthful!) While the staff has been fabulous since Day One of Kendrie’s diagnosis, they were falling all over each other in the old, cramped, crowded clinic. Now, with 23,000 square feet of space, funded in part by a $2.5 million gift from AFLAC, well, I don’t know that we’ll actually *look forward* to chemo, but let’s just say we’ll be riding in the Rolls Royce of Cancer Centers from this point on. It was nice to be a part of the opening day ceremony and see the excitement of the staff who definitely deserve such an amazing facility.
Did I mention that amid the new, immaculate, spotless facilities, with new carpet, new treatment rooms, conference rooms, offices, etc (emphasis on the word NEW) they served a BBQ lunch and one of my family members (not me!) had the dubious distinction of being the first one to spill a plate of BBQ on the brand new carpet? It’s always nice to be remembered for *something* but that wasn’t quite what I had in mind. And for the record, it’s much harder to yell at your kids when there are lots of other adults present.
Then, we left from the ceremony and took part in a Family Camp Weekend at Twin Lakes Camp, sponsored by Camp Sunshine. “Camp Sunshine provides programs throughout the year to give children with cancer the opportunity to enjoy normal activities like swimming, horseback riding, arts and crafts, and making friends!” Now if that sounds like a commercial, it’s because I took it directly off their website. Go there and check out this wonderful organization and all they do for kids with cancer, and the parents and siblings of kids with cancer.
Before those of you who know me fall over backwards in your chairs at the fact my name and “camping” were mentioned in the same sentence, let me be quick to reassure you that this is MY kind of camping --- private cabins that have heat, a/c, full baths and electricity. The camp is run by volunteers who cook, clean, and facilitate activities for the families that include fishing, boating, archery, panning for gold (my kids’ favorite!) tennis, putt putt, arts & crafts, sports … the list goes on and on. After our weekend in DC (have I mentioned to you guys that it was cold there?) the weather Gods threw us a HUGE bone and it was perfect at Camp Sunshine! Sunny, high 70’s, perfect weather for being outside. In fact, hiking down to the lake I got something suspiciously close to perspiration on my upper lip so I’d say it was almost too warm.
All of the families who attended (around twenty families) have a child either on treatment, or finished with treatment, for a variety of cancers. Talk about a peer group made in Heaven for us! And although the prevalent mood of the camp is FUN, not cancer, it was still a great chance for us to visit with other parents facing the same challenges, fears and frustrations as we are. A special memory for me this weekend was meeting Dustin, one of the counselors at the camp who used to attend as a camper himself. Diagnosed at age 7 with ALL, Dustin is now a college junior who was kind enough to visit with our family, take a special interest in Kendrie, and provide me with a glimpse of what “can be” in our future. Thank you, Dustin, for holding out that special hope for us this weekend … that kids can and are cured of this disease and go on to become kind, caring adults. The kind who now spend their spare time helping other kids with cancer attend camp. Many MANY kudos to the wonderful people who make Camp Sunshine a success.
So, I guess that’s it for us the past few days. I feel a little odd talking about how much fun we are having with all these cancer-related activities. Trust me when I say I’d much rather be sitting at home, watching a boring movie from Blockbuster, complaining that there just isn’t anything to do. You know, the way my life used to be, about six months ago. Oh well (sigh) pass me the lemons … I’ve got some squeezing to do!
Love, Kristie
LIFE LESSONS LEARNED AT CAMP LAST WEEKEND BY OUR FAMILY MEMBERS:
Blaine: Having a massage by a man does not automatically make you gay.
Kristie: Wearing new tennis shoes to camp is a really stupid way to start the weekend.
Brayden: Never go to bed with gum in your mouth. Enough said.
Kellen: Being the kid who actually catches a fish in front of everyone else is a cool thing!
Kendrie: Conga lines are much more fun when your Mom is carrying you! Hey Mom, why are you breathing so hard???
Wednesday, April 14, 2004
Easter Trip to DC
Week #2 of IM #2
OK, see if you can guess the correct answer to my statement:
“The coldest I have ever been in my life was when I……….”
A) Climbed Mount Everest with Sir Edmond Hillary
B) Raced the Iditarod
C) Had my initiation swim with the Polar Bear Club
D) Attended the 2004 Easter Egg Roll at the White House.
OK, so maybe I’m exaggerating. A little. But not a lot! Granted, I’ve never actually done letters A, B and C, but I’m still trying to warm up from letter D! I mean, we lived in North Dakota for four years, so I know cold ---- and it was COLD and wet and rainy in D.C. this weekend!!
But lots of fun too, which made the blue lips and chattering teeth worthwhile. I have to commend the White House staff, or whoever it is that is responsible, for the amazing event they put on at Easter. The “Egg Roll” itself takes only about four seconds from start to finish but is just one of many activities that take place on the White House lawn. Roaming characters, photo ops, musicians, clowns, magicians, TV entertainers, face painting, read-alongs, activities, give-aways, etc. Had the weather cooperated it truly would have been an amazing event. As it was, Kendrie refused to get out of her stroller, and Kellen cried because his hands got so cold (No reflection on the Mom of the family who packed completely inappropriate clothing, right? After all, it’s SPRING in Georgia! Who knew we would need warm clothes???) Brayden at least had fun, although she’s got a good cough now after refusing to carry an umbrella or even put the hood of her jacket up.
We wandered around for about half an hour, grabbed our goody bags and left. But it was still worth it and we’d do it again next year, given the opportunity. There are photos from the weekend in the album. On a funny note, the kids glanced up at the White House at one point and saw someone looking out a window. They are positively certain it was George or Laura Bush, admiring the festivities below. I am certain it was a White House landscaper, crying at the damage done by 16,000 guests on a muddy lawn.
The parts of our trip that made the entire weekend worthwhile were twofold. First, getting to enjoy the hospitality of our friends the Hyzys' who not only let us crash (ie., demolish) their guest suite downstairs (I’m telling you, it was bigger than my first apartment!) also let our kids pester their kids all weekend, played host and tour guide through several DC museums, and shared visitation rights from the Easter Bunny (*and* the Tooth Fairy; go Brayden!) but were kind enough to look the other way when Kendrie barfed her way through Union Station. Those incredibly expensive zofran tablets don’t do you any good when your Mom leaves them sitting on the dresser at the house, and you’re riding the Metro. (Gosh, that’s TWO big strikes against me last weekend, isn’t it?) We had such a good time and hope John, Julie, Brenna and Zack, and their home, survived the invasion.
Part two was getting the opportunity to meet so many wonderful families from my online support group, ALL-kids. I joined this list last November, shortly after Kendrie’s diagnosis and quite frankly, don’t know what I would have done without the advice, guidance, wisdom and support of the other parents. To meet some of them, and their funny, happy kids, was a real treat for our family.
l-r, Leah from VA, Kendrie, Julia from MD, Brandon from MD, and Christopher from MD.
We had an informal gathering Sunday night at the hotel while the grownups gabbed and the kids played for several hours, then met up again Monday morning to go to the White House together, as part of the National Childhood Cancer Foundation group. Thank you to this organization for making the tickets available and sponsoring the hotel gathering.
On a more somber note, one of the great kids we met this weekend, Christopher, (see picture above) attended the Egg Roll with us Monday morning, then had a routine spinal tap done on Monday afternoon. Tuesday his parents received word that Christopher has relapsed in his spinal fluid. I think “relapse” might be the worst word on the planet, second only to “cancer” or “leukemia” itself. But to see this kid, looking healthy, happy, no signs or symptoms on Monday morning, and then hear the news that Monday afternoon they found more leukemia cells in his spinal fluid after he’s already undergone 18 months of chemotherapy, is truly depressing. I can only imagine how his family must be feeling as they await word on where to go from here. If you have a minute, please drop Chris a line at his Caringbridge site. Chris from MD I’m sure they would appreciate the support.
Back at the home front, when the mail lady dropped off our mail today after holding it for four days, it was like someone broke off the top of a Christmas tree and shook it upside down over our house! I have several formal thank you notes to send out; Ms. Kelly, for the awesome Spiderman lunchbox, which Kendrie is sleeping with even as I type this; Ms. Brianna, for the fabulous care package that came today and made everyone happy, even Mom (Thanks for the note inside so we easily knew whose was whose! And we’ll deliver Madie’s as well!); Julianna Banana’s Aunt Tammy, who smuggled us a few more Julianna Banana Wish Bracelets so now Brayden and Kendrie can have their own and not try to steal mine all the time.
And the most inspiring piece of all – a notice from the American Red Cross and our good friend, Bruce G. from Connecticut, that he donated blood in Kendrie’s honor. I can’t do justice in words to the feeling of care and compassion I get when I think about people taking time from their day to donate blood, or put together a care package, or any of the many things people have done to let us know they are thinking of us. I hope everyone knows how very sincerely we appreciate it all.
Speaking of donating blood, I went last evening with my friend Kelly E and donated here in Georgia. Here’s a photo, so you can see how very UN-traumatic it is. See the big smiles on our faces? Those aren’t fake, or just for the camera. While I can’t speak for Kelly, I was excited to see they had Nutter-Butter cookies waiting, and THAT made me smile!! Thank you, Kelly, for joining me at the blood drive, and for dinner afterwards. If any one else has a few spare minutes this week, please consider donating blood as well.
Well, this is quite a disjointed journal entry, with no real clear beginning or end, but I had so many things I wanted to mention! If you’ve stuck with me this far, thanks! We are headed up to Atlanta for a chemo appointment tomorrow, then big plans this weekend, which I’ll tell you about in next week’s journal entry!
Hope you all had a great Easter,
Love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Hands down, the fact that Mom made me skip Kellen's first t-ball practice since it was so cold here. For pete's sake, Mom, I have cancer, not Snowman-melting disease!!!
BEST PART ABOUT HAVING CANCER TODAY: Well geez, did you even *read* the journal entry and hear about all the nice things people did for me and my family today?? How great is all that?!?
Thursday, April 08, 2004
"Little Known Side Effects from Chemotherapy"
1st week of IM #2
First of all, let me say Wow, and Thanks! To all of you who offered support and empathy and encouragement and kindness (and best of all, babysitting!) after my last journal entry. I should have my mini-nervous breakdowns in public more often, ha! Secondly, at the risk of sounding like an obnoxiously proud mom ….. how stinkin’ cute are my kids???? We took these pre-Easter photos tonight at a local park and I’m quite proud of their cute little faces, if I say so myself.
Kendrie’s appointment on Monday went well. She cried during the spinal tap, which is always upsetting, but the “sleepy” medicine has an amnesiac effect and she never remembers crying, which is good. I try hard to think of those procedures as a pro-active, assertive way to deliver a knock-out punch to leukemia, and remain positive about them …. But in the back of my mind is always the terror that later that afternoon we will get that awful phone call that “something showed up in the spinal fluid……………….” So I both anticipate and dread spinal-tap days.
But! No news is good news and Monday’s appointment marked the official beginning of Interim Maintenance #2. Same protocol as IM #1; it’s a 56-day cycle, with IV meds every ten days, escalating in strength, with another spinal tap thrown in half-way through for good measure. Then, the last two weeks off to give Kendrie’s bone marrow a rest, which is when we hope to go home to OKC for vacation if she’s feeling up to it and her counts are still good enough. (Let’s just say we learned our lesson at Christmas and are now firm proponents of purchasing flight insurance.) She’s already started with a few side effects; loss of appetite, and we’re giving Zofran (at the approximate cost of $8,219 per pill; thank heavens for Tri-care) for nausea and vomiting (but not quickly enough, the first day or two. Some lessons are learned the hard way.)
Speaking of lessons, I thought I would share with you a few of the less-commonly known side-effects and ramifications of chemotherapy and how it affects both the patient, and the people who surround her. These are all medically documented facts and I’ll be happy to submit my personal findings to the Surgeon General's office for inclusion in whatever important medical announcement they’ll be typing up next. I’m also pretty sure other cancer-parents will agree with me on most, if not all, and I hope they’ll feel free to add in other effects felt in their own families when they sign our guestbook.
#1. The parents of a child on chemotherapy get very, very stupid, as evidenced by the inane conversations they have with said-child on a daily basis. Case in point; conversation today:
Kendrie: “When will Dad be home? I want a new kite”
Kristie: “After work”
Kendrie: “When is that?”
Kristie: “This afternoon, same time as always, before dinner.”
Kendrie: “But after dinner will take too long”
Kristie: “I’m sorry, I can’t help how long it takes.”
Kendrie: “When will we pick the kids up?”
Kristie: “3:30 pm, same as always”
Kendrie: “But that will take too long!!!!”
This might not sound so bad until you realize we have the same conversation at least a dozen times a day. Kendrie is convinced I have no concept of time and am completely incapable of making things happen on a schedule that is convenient for her. Everything, and I mean EVERYTHING, “takes too long”.
#2. Unlike parents, who get stupid, children on chemotherapy attain near-brilliant, unshakable, dog-with-a-bone-type qualities regarding certain issues. Case in point, conversation today:
Kendrie: “Can McKenzie come over to play?”
Kristie: “I’m sorry honey, McKenzie moved to Texas for her Daddy’s new Air Force job”
Kendrie: “But I miss her! She’s my best friend!” (bear in mind McKenzie is a casual friend whom Kendrie hasn’t seen, played with, inquired about, or asked for in any shape or manner in at least a month.)
Kristie: “Well, we’ll have to make some new friends”
Kendrie: “But McKenzie is my best friend and I only want her!!!” and then proceeds to cry for half an hour, recounting every fun second she has ever spent in McKenzie’s company. She’s like “Rainman”, for pete’s sake, and can’t let it go.
#3. Promises mean absolutely nothing. Case in point, conversation today:
Kristie: “So you SWEAR, if I get dressed, drive to the bank to get cash, drive you to Stevie B’s (local pizza parlor) and buy you pizza, you will eat it? You PROMISE??”
Kendrie: “Yes, mom, I promise! I really, really, really, really want pizza for lunch; PROMISE!!”
Then she proceeds to eat one single solitary bite of the pizza … which, by the way, is the only single solitary bite of anything she has eaten for three days, if you don’t count the four bites of applesauce that we’ve mixed her Zofran in.
#4. There are actually MORE than seven layers of skin, as evidenced by the rough, tough, completely un-feminine patches of raw flesh around my knuckles caused by swimming in Purell for the past six months. I’m down at least nine or ten layers so far with no end in sight.
#5. The FDA is currently involved in secret meetings to announce the new, official food group for kids on chemo: “NOTHING” As in, “Kendrie, what are you hungry for?” NOTHING. “Kendrie, what would you like to eat?” NOTHING. “Kendrie, what are you going to waste away to if you don’t start eating?????” The only other food group being considered is the "Pokemon Blue Slurpee from Target" group, which we now value as our friend because at least it’s got sugar and calories in it, right?
#6. Children on chemotherapy become quite attached to their barf buckets and will sometimes insist on carrying them around town. Just because you see a child in the dentist’s office with a plastic bowl sitting beside them, do not immediately assume the parent is irresponsible and possibly infecting *your* child with a contagious stomach flu. Consider that your runny-nosed little hooligan might actually pose a much greater threat to barf-kid over here.
#7. The parents of kids on chemotherapy develop x-ray vision which allows them to see germ potential at a thousand yards. If you see a parent wiping down a restaurant booth or a shopping cart with antibacterial wipes, don’t think we’re crazy. Well, on second thought, maybe we are. But short of inventing a plastic bubble suit, it’s the best we can do for our kids.
#8. And lastly, because this one seems to affect me personally the most; The parents of children on chemotherapy, after spending months and months at home alone with these children, sometimes lose their adult social skills and become quite inept at grown-up conversation and humor. Case in point, conversation #1 today:
Dental hygienest: “Well, your teeth are looking very nice”
Kristie: “Thanks, I guess I’m one step closer to that career as a supermodel.”
(OK, for those of you who don’t know me personally, I am closer to 40 than I am 30, and I’m closer to 200 pounds than I am 100 …. So I thought that comment was quite funny. The look of confusion told me that the dental hygienest didn’t quite get the joke.)
Conversation #2 today:
Kristie, to Kendrie, walking up to our van in the parking lot, “Holy crap, look at this terrible parking job I did … I don’t remember doing such an awful job! Good gracious, it's so crooked!!”
Person behind Kristie, “That’s MY van”
So I guess rather than sign up for that computer class to figure out how to make this Caringbridge page actually look the way I want it to look, I’ll be spending my tuition money at the Emily Post School for Cancer Parents. Or maybe I could just buy duct tape for my mouth, I imagine that’s cheaper.
Wish us luck this weekend in DC for the Easter Egg Hunt. The forecast is calling for rain and the event will not be rescheduled if that happens. I know we’ll still have a great time visiting old friends, meeting new friends and seeing other sites, but my kids are very excited at the possibility of seeing the current resident of the White House, "George Washington". I have a funny feeling they have just as good a shot of seeing George Washington as they do George Bush, but I don’t want to burst their bubble. At least they're learning *something* about American History!
Happy Easter to all of you, also!
Love, Kristie
#################################################
KENDRIE'S PERSPECTIVE:
WORST PART OF HAVING CANCER TODAY: To be honest, my stomach is feeling a little freaky lately.
BEST PART OF HAVING CANCER TODAY: When else is my mom going to let me have just a blue slurpee for lunch???
First of all, let me say Wow, and Thanks! To all of you who offered support and empathy and encouragement and kindness (and best of all, babysitting!) after my last journal entry. I should have my mini-nervous breakdowns in public more often, ha! Secondly, at the risk of sounding like an obnoxiously proud mom ….. how stinkin’ cute are my kids???? We took these pre-Easter photos tonight at a local park and I’m quite proud of their cute little faces, if I say so myself.
Kendrie’s appointment on Monday went well. She cried during the spinal tap, which is always upsetting, but the “sleepy” medicine has an amnesiac effect and she never remembers crying, which is good. I try hard to think of those procedures as a pro-active, assertive way to deliver a knock-out punch to leukemia, and remain positive about them …. But in the back of my mind is always the terror that later that afternoon we will get that awful phone call that “something showed up in the spinal fluid……………….” So I both anticipate and dread spinal-tap days.
But! No news is good news and Monday’s appointment marked the official beginning of Interim Maintenance #2. Same protocol as IM #1; it’s a 56-day cycle, with IV meds every ten days, escalating in strength, with another spinal tap thrown in half-way through for good measure. Then, the last two weeks off to give Kendrie’s bone marrow a rest, which is when we hope to go home to OKC for vacation if she’s feeling up to it and her counts are still good enough. (Let’s just say we learned our lesson at Christmas and are now firm proponents of purchasing flight insurance.) She’s already started with a few side effects; loss of appetite, and we’re giving Zofran (at the approximate cost of $8,219 per pill; thank heavens for Tri-care) for nausea and vomiting (but not quickly enough, the first day or two. Some lessons are learned the hard way.)
Speaking of lessons, I thought I would share with you a few of the less-commonly known side-effects and ramifications of chemotherapy and how it affects both the patient, and the people who surround her. These are all medically documented facts and I’ll be happy to submit my personal findings to the Surgeon General's office for inclusion in whatever important medical announcement they’ll be typing up next. I’m also pretty sure other cancer-parents will agree with me on most, if not all, and I hope they’ll feel free to add in other effects felt in their own families when they sign our guestbook.
#1. The parents of a child on chemotherapy get very, very stupid, as evidenced by the inane conversations they have with said-child on a daily basis. Case in point; conversation today:
Kendrie: “When will Dad be home? I want a new kite”
Kristie: “After work”
Kendrie: “When is that?”
Kristie: “This afternoon, same time as always, before dinner.”
Kendrie: “But after dinner will take too long”
Kristie: “I’m sorry, I can’t help how long it takes.”
Kendrie: “When will we pick the kids up?”
Kristie: “3:30 pm, same as always”
Kendrie: “But that will take too long!!!!”
This might not sound so bad until you realize we have the same conversation at least a dozen times a day. Kendrie is convinced I have no concept of time and am completely incapable of making things happen on a schedule that is convenient for her. Everything, and I mean EVERYTHING, “takes too long”.
#2. Unlike parents, who get stupid, children on chemotherapy attain near-brilliant, unshakable, dog-with-a-bone-type qualities regarding certain issues. Case in point, conversation today:
Kendrie: “Can McKenzie come over to play?”
Kristie: “I’m sorry honey, McKenzie moved to Texas for her Daddy’s new Air Force job”
Kendrie: “But I miss her! She’s my best friend!” (bear in mind McKenzie is a casual friend whom Kendrie hasn’t seen, played with, inquired about, or asked for in any shape or manner in at least a month.)
Kristie: “Well, we’ll have to make some new friends”
Kendrie: “But McKenzie is my best friend and I only want her!!!” and then proceeds to cry for half an hour, recounting every fun second she has ever spent in McKenzie’s company. She’s like “Rainman”, for pete’s sake, and can’t let it go.
#3. Promises mean absolutely nothing. Case in point, conversation today:
Kristie: “So you SWEAR, if I get dressed, drive to the bank to get cash, drive you to Stevie B’s (local pizza parlor) and buy you pizza, you will eat it? You PROMISE??”
Kendrie: “Yes, mom, I promise! I really, really, really, really want pizza for lunch; PROMISE!!”
Then she proceeds to eat one single solitary bite of the pizza … which, by the way, is the only single solitary bite of anything she has eaten for three days, if you don’t count the four bites of applesauce that we’ve mixed her Zofran in.
#4. There are actually MORE than seven layers of skin, as evidenced by the rough, tough, completely un-feminine patches of raw flesh around my knuckles caused by swimming in Purell for the past six months. I’m down at least nine or ten layers so far with no end in sight.
#5. The FDA is currently involved in secret meetings to announce the new, official food group for kids on chemo: “NOTHING” As in, “Kendrie, what are you hungry for?” NOTHING. “Kendrie, what would you like to eat?” NOTHING. “Kendrie, what are you going to waste away to if you don’t start eating?????” The only other food group being considered is the "Pokemon Blue Slurpee from Target" group, which we now value as our friend because at least it’s got sugar and calories in it, right?
#6. Children on chemotherapy become quite attached to their barf buckets and will sometimes insist on carrying them around town. Just because you see a child in the dentist’s office with a plastic bowl sitting beside them, do not immediately assume the parent is irresponsible and possibly infecting *your* child with a contagious stomach flu. Consider that your runny-nosed little hooligan might actually pose a much greater threat to barf-kid over here.
#7. The parents of kids on chemotherapy develop x-ray vision which allows them to see germ potential at a thousand yards. If you see a parent wiping down a restaurant booth or a shopping cart with antibacterial wipes, don’t think we’re crazy. Well, on second thought, maybe we are. But short of inventing a plastic bubble suit, it’s the best we can do for our kids.
#8. And lastly, because this one seems to affect me personally the most; The parents of children on chemotherapy, after spending months and months at home alone with these children, sometimes lose their adult social skills and become quite inept at grown-up conversation and humor. Case in point, conversation #1 today:
Dental hygienest: “Well, your teeth are looking very nice”
Kristie: “Thanks, I guess I’m one step closer to that career as a supermodel.”
(OK, for those of you who don’t know me personally, I am closer to 40 than I am 30, and I’m closer to 200 pounds than I am 100 …. So I thought that comment was quite funny. The look of confusion told me that the dental hygienest didn’t quite get the joke.)
Conversation #2 today:
Kristie, to Kendrie, walking up to our van in the parking lot, “Holy crap, look at this terrible parking job I did … I don’t remember doing such an awful job! Good gracious, it's so crooked!!”
Person behind Kristie, “That’s MY van”
So I guess rather than sign up for that computer class to figure out how to make this Caringbridge page actually look the way I want it to look, I’ll be spending my tuition money at the Emily Post School for Cancer Parents. Or maybe I could just buy duct tape for my mouth, I imagine that’s cheaper.
Wish us luck this weekend in DC for the Easter Egg Hunt. The forecast is calling for rain and the event will not be rescheduled if that happens. I know we’ll still have a great time visiting old friends, meeting new friends and seeing other sites, but my kids are very excited at the possibility of seeing the current resident of the White House, "George Washington". I have a funny feeling they have just as good a shot of seeing George Washington as they do George Bush, but I don’t want to burst their bubble. At least they're learning *something* about American History!
Happy Easter to all of you, also!
Love, Kristie
#################################################
KENDRIE'S PERSPECTIVE:
WORST PART OF HAVING CANCER TODAY: To be honest, my stomach is feeling a little freaky lately.
BEST PART OF HAVING CANCER TODAY: When else is my mom going to let me have just a blue slurpee for lunch???
Sunday, April 04, 2004
LAST DAY OF DI #1
Well, only 24 hours to go, and Kendrie will officially be done with this phase, Delayed Intensification #1. Assuming her counts are ok at the clinic this upcoming Monday (and they were fine on Friday, so we assume they should be) she will begin Interim Maintenance #2 with a lumbar puncture and IV medications on Monday morning. Sending up a big prayer that she handles IM #2 as well as she handled IM #1. She seems to be feeling good; at least good enough to fight with her brother and sister and fuss when she doesn’t get her way. She’s such a funny little kid, and makes me laugh on a regular basis, like on Thursday when she insisted that our English Setter needed his “magic cream” before receiving his shot for kennel cough.
So, enough about her. Let’s talk about another fascinating, riveting subject for awhile. How about me? Kidding, of course ………. Well, no not really. Let’s actually talk about me. Let me preface this by saying I am under no delusion that what Blaine and I are going through as the parents of a child with cancer compares in any way to what she is going through herself. I give Kendrie, and all the other kids with leukemia, complete credit for making it through this suck-fest with such grace and spirit. You know the phrase about the poo-poo hitting the fan? No doubt, cancer is the poo-poo and Kendrie is the unfortunate fan that got whacked with it, but we did get a little residual poo-poo splatter thanks to the centrifugal force, and it stinks, too.
I admit it, I’ve been in a funk. In fact, I haven’t updated the site because I didn’t want to seem pathetic and lame …………….. then realized I *am* pathetic and lame, so who am I kidding? I didn’t used to be pathetic and lame. I am normally a sunny, upbeat, positive person (hey…. Was that a SNORT I just heard coming from Blaine’s direction?) but the past week or so I’ve been feeling a little overwhelmed. Most likely because I was so sleep-deprived after the Pre-Kindergarten Camping Outside for 48-Hour Registration Extravaganza, and sleeping in a lawn chair nowadays isn’t near as fun as it was when I was 18 and in line for REO tickets. Hey, I still really like that group. Does anyone know if REO is touring this summer? Sometimes they go around with Styx or Cheap Trick ………. What? What was I saying? Oh yeah, I’ve been distracted and in a funk. And because I’m all about absolving myself of responsibility for anything that stinks, I’m compiling a list of the lousy ways leukemia makes me feel -- besides worried and stressed and frightened -- and have no intention of taking responsibility myself. Here goes:
1. Leukemia makes me feel like a financial ignoramus. Since Kendrie’s diagnosis, there are so many things over which we no longer have control, that I find myself searching for ways to assert my control (even imaginary control, ok) to make myself feel better. I realized we had some extra money in our checking account that we have been saving for a rainy day and decided the wise thing to do (because everyone who knows me knows what a Midas-money-wizard I am… not) would be open up a savings account and earn some interest. So I went to the bank today, stood in line, wrote the check, transferred the money over, opened the account, and as I’m walking out the door think to ask, “so, what is the interest rate anyway?” to which the teller replies “0.0025” OK, at that rate, I should earn approximately $12.94 this year, and after paying $14.99 for the new checks, I figure I’ll be operating at a net loss of $1.96. Now just how silly was that? Damn, guess that means I’ll lose my apprentice opportunity with the Donald. If I hadn’t been so distracted by the leukemia, I would have known well-enough to invest in pork rinds or Martha Stewart stock or something worthwhile.
2. Leukemia has made me the most boring guest at the Party of Life. I realize how amazingly self-centered I am, and am trying, and failing miserably, to stop. I scrap-booked today with friends and lost count of the number of times I heard “before Kendrie got sick” or “after Kendrie got sick” or “now that Kendrie is sick” come out of my mouth. My gosh, my OWN eyes glazed over after a while! Kelly, Erin and Renee, thanks for putting up with me today, but next time let’s get a code word established, like LOBOTOMY or COMATOSE, so you can clue me in to how dull I am!!!
3. Leukemia has frustrated me on a technological level that I didn’t even realize was possible. Before leukemia, I had never heard of a Caring Bridge site. Now, I can’t tell you the number of hours I have spent online, browsing techno web sites, downloading programs and help guides involving syllables like ftp, html, mp3, dmc, amp, and all sorts of other acronyms, in an attempt to make the site interesting; music, graphics, photos, etc. Other people can make it work ……….. and probably don’t pull all their hair out in the process. But not me. I am now desperate enough that I have my husband stalking the poor computer guys at his work trying to find someone willing to come to my house and let me pay them for a private tutoring session. How sad is that???
I guess those are the big three and I can stop for now. But you know what has cheered me up immensely this week? See the photo at the top of this page of Brayden, Kellen and Kendrie wearing their new caps from my friend Jadine in Texas ….. well, Jadine was kind enough to send me a computer link to one of the funniest things I have seen online in a long time. I’m going to try to make it into a link on this site so you can see it, too. Simple, really, but it cracked me up and I went to it repeatedly this week for a smile. Thank you, Jadine, smooches to Pflugerville! (but next time, you might want to consider simply sending a straight jacket, size XL). Trombone Man OK, I can't even make it work by cutting and pasting, but if you would like to see it (I promise, it's not dirty or anything, just cute) let me know and I'll e-mail it to you.
OK, here are a couple of great Caringbridge sites to check out: First, go to Bryan Banister and please sign up for the Bone Marrow Registry Challenge, 2004, organized by Bryan and his wife Karen. Worthy, worthy cause. I am already signed up or I would definitely join their challenge and be proud! And, Karen and her friends are taking part in a Relay for Life in Canada and hoping to gather 720 photos of persons affected by cancer, one for every minute of the relay. So please go to the site and consider sending in a photo. Remember to sign their guestbook, too!
Also visit Noah Hurley If you have a minute or two, go back through Noah’s mom’s journal history. She does a really great job, in my opinion, of balancing both the necessary optimism and the unavoidable fears and sadness that seem to go hand in hand with this illness. I always look forward to her updates because she often hits the nail right on the head for me. Be sure to sign their guestbook, too!
And peace be to Maxie, who spent his first birthday in Heaven yesterday. I’m sure the day was especially difficult for his family, and just want them to know I am thinking of all of them.
I guess that it’s for us. Our big news for this week is that we will be leaving on Thursday to spend Easter weekend with our friends the Hyzy’s in Virginia; sightseeing in DC and getting to attend the Easter Egg Roll at the White House on Monday. The National Children’s Cancer Foundation (did I get that right?) offers tickets each year to cancer-families and we are so excited to attend (Blaine said we had to go this year while there is still a guaranteed Republican in the Oval Office!) and also to meet some of the other families I am online with. I think it’s going to be a once-in-a-lifetime opportunity and just hope the Hyzy’s don’t bolt their doors shut after we leave!
Thanks again for taking a minute and signing Kendrie’s guestbook. We check it every single day and it’s always so fun to read the new messages.
Love, Kristie
###################################################
KENDRIE'S PERSPECTIVE:
TOP 6 ICKY THINGS ABOUT DELAYED INTENSIFICATION CHEMO:
1. Taking steroids again! Total doses of oral medications to date: 324
2. Spinal taps and bone marrows to date: 15
3. Shots to date: 12
4. Having to get a blood transfusion.
5. Being so tired when my counts dropped.
6. Barfing so much, especially in the front yard, gross!
TOP 5 BEST THING ABOUT DELAYED INTENSIFICATION:
1. My new Spiderman baseball cap.
2. The special smile my mommy and I exchange whenever someone says, "My, what a cute little boy you have" which happens about twenty-eleventeen times a day.
3. With the exception of a few tired days, I felt pretty good over all.
4. My new Daddy Day Care dvd.
5. It's over and I'm still in remission!
So, enough about her. Let’s talk about another fascinating, riveting subject for awhile. How about me? Kidding, of course ………. Well, no not really. Let’s actually talk about me. Let me preface this by saying I am under no delusion that what Blaine and I are going through as the parents of a child with cancer compares in any way to what she is going through herself. I give Kendrie, and all the other kids with leukemia, complete credit for making it through this suck-fest with such grace and spirit. You know the phrase about the poo-poo hitting the fan? No doubt, cancer is the poo-poo and Kendrie is the unfortunate fan that got whacked with it, but we did get a little residual poo-poo splatter thanks to the centrifugal force, and it stinks, too.
I admit it, I’ve been in a funk. In fact, I haven’t updated the site because I didn’t want to seem pathetic and lame …………….. then realized I *am* pathetic and lame, so who am I kidding? I didn’t used to be pathetic and lame. I am normally a sunny, upbeat, positive person (hey…. Was that a SNORT I just heard coming from Blaine’s direction?) but the past week or so I’ve been feeling a little overwhelmed. Most likely because I was so sleep-deprived after the Pre-Kindergarten Camping Outside for 48-Hour Registration Extravaganza, and sleeping in a lawn chair nowadays isn’t near as fun as it was when I was 18 and in line for REO tickets. Hey, I still really like that group. Does anyone know if REO is touring this summer? Sometimes they go around with Styx or Cheap Trick ………. What? What was I saying? Oh yeah, I’ve been distracted and in a funk. And because I’m all about absolving myself of responsibility for anything that stinks, I’m compiling a list of the lousy ways leukemia makes me feel -- besides worried and stressed and frightened -- and have no intention of taking responsibility myself. Here goes:
1. Leukemia makes me feel like a financial ignoramus. Since Kendrie’s diagnosis, there are so many things over which we no longer have control, that I find myself searching for ways to assert my control (even imaginary control, ok) to make myself feel better. I realized we had some extra money in our checking account that we have been saving for a rainy day and decided the wise thing to do (because everyone who knows me knows what a Midas-money-wizard I am… not) would be open up a savings account and earn some interest. So I went to the bank today, stood in line, wrote the check, transferred the money over, opened the account, and as I’m walking out the door think to ask, “so, what is the interest rate anyway?” to which the teller replies “0.0025” OK, at that rate, I should earn approximately $12.94 this year, and after paying $14.99 for the new checks, I figure I’ll be operating at a net loss of $1.96. Now just how silly was that? Damn, guess that means I’ll lose my apprentice opportunity with the Donald. If I hadn’t been so distracted by the leukemia, I would have known well-enough to invest in pork rinds or Martha Stewart stock or something worthwhile.
2. Leukemia has made me the most boring guest at the Party of Life. I realize how amazingly self-centered I am, and am trying, and failing miserably, to stop. I scrap-booked today with friends and lost count of the number of times I heard “before Kendrie got sick” or “after Kendrie got sick” or “now that Kendrie is sick” come out of my mouth. My gosh, my OWN eyes glazed over after a while! Kelly, Erin and Renee, thanks for putting up with me today, but next time let’s get a code word established, like LOBOTOMY or COMATOSE, so you can clue me in to how dull I am!!!
3. Leukemia has frustrated me on a technological level that I didn’t even realize was possible. Before leukemia, I had never heard of a Caring Bridge site. Now, I can’t tell you the number of hours I have spent online, browsing techno web sites, downloading programs and help guides involving syllables like ftp, html, mp3, dmc, amp, and all sorts of other acronyms, in an attempt to make the site interesting; music, graphics, photos, etc. Other people can make it work ……….. and probably don’t pull all their hair out in the process. But not me. I am now desperate enough that I have my husband stalking the poor computer guys at his work trying to find someone willing to come to my house and let me pay them for a private tutoring session. How sad is that???
I guess those are the big three and I can stop for now. But you know what has cheered me up immensely this week? See the photo at the top of this page of Brayden, Kellen and Kendrie wearing their new caps from my friend Jadine in Texas ….. well, Jadine was kind enough to send me a computer link to one of the funniest things I have seen online in a long time. I’m going to try to make it into a link on this site so you can see it, too. Simple, really, but it cracked me up and I went to it repeatedly this week for a smile. Thank you, Jadine, smooches to Pflugerville! (but next time, you might want to consider simply sending a straight jacket, size XL). Trombone Man OK, I can't even make it work by cutting and pasting, but if you would like to see it (I promise, it's not dirty or anything, just cute) let me know and I'll e-mail it to you.
OK, here are a couple of great Caringbridge sites to check out: First, go to Bryan Banister and please sign up for the Bone Marrow Registry Challenge, 2004, organized by Bryan and his wife Karen. Worthy, worthy cause. I am already signed up or I would definitely join their challenge and be proud! And, Karen and her friends are taking part in a Relay for Life in Canada and hoping to gather 720 photos of persons affected by cancer, one for every minute of the relay. So please go to the site and consider sending in a photo. Remember to sign their guestbook, too!
Also visit Noah Hurley If you have a minute or two, go back through Noah’s mom’s journal history. She does a really great job, in my opinion, of balancing both the necessary optimism and the unavoidable fears and sadness that seem to go hand in hand with this illness. I always look forward to her updates because she often hits the nail right on the head for me. Be sure to sign their guestbook, too!
And peace be to Maxie, who spent his first birthday in Heaven yesterday. I’m sure the day was especially difficult for his family, and just want them to know I am thinking of all of them.
I guess that it’s for us. Our big news for this week is that we will be leaving on Thursday to spend Easter weekend with our friends the Hyzy’s in Virginia; sightseeing in DC and getting to attend the Easter Egg Roll at the White House on Monday. The National Children’s Cancer Foundation (did I get that right?) offers tickets each year to cancer-families and we are so excited to attend (Blaine said we had to go this year while there is still a guaranteed Republican in the Oval Office!) and also to meet some of the other families I am online with. I think it’s going to be a once-in-a-lifetime opportunity and just hope the Hyzy’s don’t bolt their doors shut after we leave!
Thanks again for taking a minute and signing Kendrie’s guestbook. We check it every single day and it’s always so fun to read the new messages.
Love, Kristie
###################################################
KENDRIE'S PERSPECTIVE:
TOP 6 ICKY THINGS ABOUT DELAYED INTENSIFICATION CHEMO:
1. Taking steroids again! Total doses of oral medications to date: 324
2. Spinal taps and bone marrows to date: 15
3. Shots to date: 12
4. Having to get a blood transfusion.
5. Being so tired when my counts dropped.
6. Barfing so much, especially in the front yard, gross!
TOP 5 BEST THING ABOUT DELAYED INTENSIFICATION:
1. My new Spiderman baseball cap.
2. The special smile my mommy and I exchange whenever someone says, "My, what a cute little boy you have" which happens about twenty-eleventeen times a day.
3. With the exception of a few tired days, I felt pretty good over all.
4. My new Daddy Day Care dvd.
5. It's over and I'm still in remission!
Wednesday, March 31, 2004
NEW AND IMPROVED CANADA LIST:
You can go back a few journal entries if you don't know what I'm talking about, but here is a list of things mentioned in Kendrie’s guestbook over the past week or two, of additional Canadian persons, places and things that all deserve mention. Not necessarily POSITIVE mention; after all, Jim Carey is on the list. (I am SO not a Jim Carey fan!) But mention, nonetheless.
The movie “Strange Brew” which I think was an earlier showcase of the beer-swilling voice talents from the moose of “Brother Bear” …………. I personally have never seen moose drink beer, but maybe this is where the two worlds intersect. ????
The Avonlea books. (what???? Are these the ones with Fabio on the cover?)
Music groups:
The Barenaked Ladies (their name makes me giggle)
Rush (total flashback to the 80's for me)
Triumph (another flashback ........ guess I'm dating myself)
The Guess Who (at least THIS group is too old for me!)
BTO (any group whose name is so long it can be reduced to syllables and people actually know who you're talking about, now THAT'S what I call success!)
Nickleback (only group on this list so far still getting any air time)
Avril Lavigne (Is it ok for an almost 40-something carpool mom to totally love Sk8er Boi???)
Actors and actresses:
Jim Carey (again, ugh)
Martin Short (totally loved Inner Space)
Mike Myers (woohoo, Shrek 2 is coming up!)
Dan Ackroyd
Lorne Michaels (the Bonanza guy???)
John Candy
Keanau Reeves (yummy!)
Christopher Plummer (who?)
Matthew Perry (all good Friends must come to an end, I suppose)
Donald and Keifer Sutherland (ok, the young one is cute, but the old one is creepy!)
Pamela Anderson (this joke is just too easy)
Kim Catrell (Blaine really liked her in the Mannequin-era, but not so much in the Sex & the City era. Of course, that could be because we don’t have HBO and he’s never actually *seen* Sex & the City.)
William Shatner (of “beam me up, Scotty” fame??)
and Monty Hall (when I first read this name in the guestbook I thought they meant Monty Python and I could have sworn he was British. Then the light bulb went off ……..the Let’s Make A Deal guy, right?)
Two very special angels: Angel Marcus and Angel Conor Please stop by their sites and let their families know you still care.
Smarties and Mars Bars
Relatives of a couple of great Caringbridge kids: Ashley and Conor
And as far as Blaine is concerned, the very best thing to come out of Canada; Canadian geese. He prefers them coming out of Canada in late fall, preferably flying right over his decoys, on their way to Florida.
Thanks to all our friends, both north and south of the border, who sent me these suggestions for our Canada-list. One of these days we hope to make it up there and see for ourselves all the great things offered there. Of course, after reading some of the testimonials of late, I think we'll wait until sometime in the summer to do so!!
The movie “Strange Brew” which I think was an earlier showcase of the beer-swilling voice talents from the moose of “Brother Bear” …………. I personally have never seen moose drink beer, but maybe this is where the two worlds intersect. ????
The Avonlea books. (what???? Are these the ones with Fabio on the cover?)
Music groups:
The Barenaked Ladies (their name makes me giggle)
Rush (total flashback to the 80's for me)
Triumph (another flashback ........ guess I'm dating myself)
The Guess Who (at least THIS group is too old for me!)
BTO (any group whose name is so long it can be reduced to syllables and people actually know who you're talking about, now THAT'S what I call success!)
Nickleback (only group on this list so far still getting any air time)
Avril Lavigne (Is it ok for an almost 40-something carpool mom to totally love Sk8er Boi???)
Actors and actresses:
Jim Carey (again, ugh)
Martin Short (totally loved Inner Space)
Mike Myers (woohoo, Shrek 2 is coming up!)
Dan Ackroyd
Lorne Michaels (the Bonanza guy???)
John Candy
Keanau Reeves (yummy!)
Christopher Plummer (who?)
Matthew Perry (all good Friends must come to an end, I suppose)
Donald and Keifer Sutherland (ok, the young one is cute, but the old one is creepy!)
Pamela Anderson (this joke is just too easy)
Kim Catrell (Blaine really liked her in the Mannequin-era, but not so much in the Sex & the City era. Of course, that could be because we don’t have HBO and he’s never actually *seen* Sex & the City.)
William Shatner (of “beam me up, Scotty” fame??)
and Monty Hall (when I first read this name in the guestbook I thought they meant Monty Python and I could have sworn he was British. Then the light bulb went off ……..the Let’s Make A Deal guy, right?)
Two very special angels: Angel Marcus and Angel Conor Please stop by their sites and let their families know you still care.
Smarties and Mars Bars
Relatives of a couple of great Caringbridge kids: Ashley and Conor
And as far as Blaine is concerned, the very best thing to come out of Canada; Canadian geese. He prefers them coming out of Canada in late fall, preferably flying right over his decoys, on their way to Florida.
Thanks to all our friends, both north and south of the border, who sent me these suggestions for our Canada-list. One of these days we hope to make it up there and see for ourselves all the great things offered there. Of course, after reading some of the testimonials of late, I think we'll wait until sometime in the summer to do so!!
Wednesday, March 24, 2004
DEFINITION OF A HERO
WEEK 7, DI #1
I am a mother. I am also a cook, chauffeur, laundress, maid, homework-checker, lunch-packer, playdate organizer, and appointment planner, just to name a few. And occasionally, rarely, sometimes, in the eyes of my children, I get to be a HERO. Take last Wednesday for example. On our way to a playdate with friends at the park, I drove through the drive-through at Sonic (great rabbit-pellet ice; cups that don’t sweat) for drinks. I was in Blaine’s truck and the kids were on the bench-seat behind me. When I rolled down my window to place my order, a bee flew in the truck. NOT a giant, poisonous, mutant African stinging bee, but a teeny, tiny, not-much-bigger-than-a-fly bee. In the bee-world, this guy was definitely sitting way low on the totem pole. He was practically a Pre-Bee (a joke for the other leukemia parents that read this).
My children, of course, freak out. Especially my manly, rough, tough, all-boy son …. Who is squealing like a girl sitting in the front row of a Shawn Cassidy concert and practically climbing over the seat in front of him to escape the wrath of the gnat/bee. I wasn’t quite sure how to get the bee out since the back seat window doesn’t roll down. Kellen, being the great help that he is, starts screaming, “Get the skyscraper! Get the skyscraper!” I actually had to stop and think, before I realized he meant “ice scraper”, which I did, but couldn’t smack the thing with just the little pointy corner.
Finally, after several minutes frantically and unsuccessfully whacking the bee with the skyscraper, it occurred to me to simply open the back door to the truck (I know, I’m not the sharpest crayon in the box sometime) and the bee flew away, quite happily. At which point I got to bask in the glow of the “hero-dom” I acquired in the eyes of my children (especially my frantic, no-plans-to-be-a-beekeeper,-obviously-son.)
So who are *my* heroes? Today, I can think of three, collectively. First, all the medical staff, nurses, doctors and researchers who are working so hard to find a cure for leukemia, who have made such progress in the treatments to date, and who take care of my child on a daily basis. Truly, it’s more than a job, it’s a calling, and there is no way to thank them enough.
Secondly, Kendrie herself is a hero to me. Is it because she handles this battle with courage and grace? Is it because she suffers stoically the side effects from treatment, and bravely marches forward towards her ultimate cure, despite the harshness of the treatment itself?? It is the dignity and calm with which she faces each obstacle? Hell, no! She has a squeal that rivals her brother! She hates the treatment, the procedures, the medication---- and there isn’t a stoic bone in her body! But you know what? She gets through it anyway, despite how much she hates it, and that makes her my hero.
Lastly (for today; I reserve the right to add more heroes later) my hero is the anonymous person who donated blood in the Atlanta area sometime in the past 45 days. Kendrie’s count results from yesterday showed all of her counts dropped (as expected) and her hemoglobin dropped below the cut-off number for transfusion. So today we went up to the clinic so she could have the blood transfusion she needed to get her numbers back up to a safe level. Hemoglobin carries oxygen, and it was obvious by looking at her she didn’t have enough ….. pale complexion, pale lips, lots of naps. Three hours later, viola! Pink cheeks and energy to spare.
So who was this person who gave my daughter the gift of life today? I’ll never know. Our family is not allowed to direct donate to Kendrie in the event she might (God forbid) need a bone marrow transplant at some point in the future. If she were to receive blood from one of us, that would make that person ineligible to donate bone marrow to her if she were to relapse and need it. Of course family would be her best hope for a bone marrow match, so we can’t take ourselves out of the running like that (at least that is how it has been explained to me.)
So we depend on the kindness of strangers who are willing to donate blood for someone they don’t know. Someone who took an hour or two out of their schedule to give the precious gift of a blood or plasma or platelet donation. Someone who perhaps gave up a long lunch with friends and instead ate a sandwich at the donor center while donating. Someone who gave up a few hours at the gym, or the mall, or in front of their tv relaxing, so they could make a difference in the life of someone who needed help. Today that someone was my daughter and I am eternally grateful.
Please, consider donating yourself. If you’ve donated in the past, please do it again. Yes, it takes a few moments out of your day, but the positive ramifications of your selflessness are never-ending. GIVE LIFE 1-800-GIVE-LIFE (1-800-448-3543)
Stay tuned (stay tuned???? Who am I?? Jeff Probst???) for the new-and-improved Canadian list …. I had no idea how many cool Canadian things were out there, and will be sending out an updated version in my next journal entry. Thanks to all of you for your suggestions.
Kristie
#####################################################
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: The panic I felt when the nurse dropped my vial of blood and it shattered on the floor. Then I remembered my port was already accessed and I didn't have to get poked again.
BEST PART ABOUT HAVING CANCER TODAY: When my mom found out we would be making the drive to and from Atlanta today, plus spending six hours in the clinic, she went out and bought me a copy of "Daddy Day Care", my current favorite movie, to watch on our portable dvd player and keep myself entertained. At this rate, I'll have quite the little dvd collection before all is said and done! Watch out, Roper and Ebert!
I am a mother. I am also a cook, chauffeur, laundress, maid, homework-checker, lunch-packer, playdate organizer, and appointment planner, just to name a few. And occasionally, rarely, sometimes, in the eyes of my children, I get to be a HERO. Take last Wednesday for example. On our way to a playdate with friends at the park, I drove through the drive-through at Sonic (great rabbit-pellet ice; cups that don’t sweat) for drinks. I was in Blaine’s truck and the kids were on the bench-seat behind me. When I rolled down my window to place my order, a bee flew in the truck. NOT a giant, poisonous, mutant African stinging bee, but a teeny, tiny, not-much-bigger-than-a-fly bee. In the bee-world, this guy was definitely sitting way low on the totem pole. He was practically a Pre-Bee (a joke for the other leukemia parents that read this).
My children, of course, freak out. Especially my manly, rough, tough, all-boy son …. Who is squealing like a girl sitting in the front row of a Shawn Cassidy concert and practically climbing over the seat in front of him to escape the wrath of the gnat/bee. I wasn’t quite sure how to get the bee out since the back seat window doesn’t roll down. Kellen, being the great help that he is, starts screaming, “Get the skyscraper! Get the skyscraper!” I actually had to stop and think, before I realized he meant “ice scraper”, which I did, but couldn’t smack the thing with just the little pointy corner.
Finally, after several minutes frantically and unsuccessfully whacking the bee with the skyscraper, it occurred to me to simply open the back door to the truck (I know, I’m not the sharpest crayon in the box sometime) and the bee flew away, quite happily. At which point I got to bask in the glow of the “hero-dom” I acquired in the eyes of my children (especially my frantic, no-plans-to-be-a-beekeeper,-obviously-son.)
So who are *my* heroes? Today, I can think of three, collectively. First, all the medical staff, nurses, doctors and researchers who are working so hard to find a cure for leukemia, who have made such progress in the treatments to date, and who take care of my child on a daily basis. Truly, it’s more than a job, it’s a calling, and there is no way to thank them enough.
Secondly, Kendrie herself is a hero to me. Is it because she handles this battle with courage and grace? Is it because she suffers stoically the side effects from treatment, and bravely marches forward towards her ultimate cure, despite the harshness of the treatment itself?? It is the dignity and calm with which she faces each obstacle? Hell, no! She has a squeal that rivals her brother! She hates the treatment, the procedures, the medication---- and there isn’t a stoic bone in her body! But you know what? She gets through it anyway, despite how much she hates it, and that makes her my hero.
Lastly (for today; I reserve the right to add more heroes later) my hero is the anonymous person who donated blood in the Atlanta area sometime in the past 45 days. Kendrie’s count results from yesterday showed all of her counts dropped (as expected) and her hemoglobin dropped below the cut-off number for transfusion. So today we went up to the clinic so she could have the blood transfusion she needed to get her numbers back up to a safe level. Hemoglobin carries oxygen, and it was obvious by looking at her she didn’t have enough ….. pale complexion, pale lips, lots of naps. Three hours later, viola! Pink cheeks and energy to spare.
So who was this person who gave my daughter the gift of life today? I’ll never know. Our family is not allowed to direct donate to Kendrie in the event she might (God forbid) need a bone marrow transplant at some point in the future. If she were to receive blood from one of us, that would make that person ineligible to donate bone marrow to her if she were to relapse and need it. Of course family would be her best hope for a bone marrow match, so we can’t take ourselves out of the running like that (at least that is how it has been explained to me.)
So we depend on the kindness of strangers who are willing to donate blood for someone they don’t know. Someone who took an hour or two out of their schedule to give the precious gift of a blood or plasma or platelet donation. Someone who perhaps gave up a long lunch with friends and instead ate a sandwich at the donor center while donating. Someone who gave up a few hours at the gym, or the mall, or in front of their tv relaxing, so they could make a difference in the life of someone who needed help. Today that someone was my daughter and I am eternally grateful.
Please, consider donating yourself. If you’ve donated in the past, please do it again. Yes, it takes a few moments out of your day, but the positive ramifications of your selflessness are never-ending. GIVE LIFE 1-800-GIVE-LIFE (1-800-448-3543)
Stay tuned (stay tuned???? Who am I?? Jeff Probst???) for the new-and-improved Canadian list …. I had no idea how many cool Canadian things were out there, and will be sending out an updated version in my next journal entry. Thanks to all of you for your suggestions.
Kristie
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KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: The panic I felt when the nurse dropped my vial of blood and it shattered on the floor. Then I remembered my port was already accessed and I didn't have to get poked again.
BEST PART ABOUT HAVING CANCER TODAY: When my mom found out we would be making the drive to and from Atlanta today, plus spending six hours in the clinic, she went out and bought me a copy of "Daddy Day Care", my current favorite movie, to watch on our portable dvd player and keep myself entertained. At this rate, I'll have quite the little dvd collection before all is said and done! Watch out, Roper and Ebert!
Thursday, March 18, 2004
CHEERS FOR OUR NEIGHBORS UP NORTH!!
Week #6 of DI #1
I realize that title might be a bit misleading, considering we live in middle Georgia and pretty much anyone not residing at Disneyworld is technically a neighbor to our north. But today, specifically, I am speaking of that great country Canada and all it has to offer.
Despite living in Minot, ND for four years, only fifty or so miles from the Canadian border, I’ve not spent much time in the land of Cannuks. Blaine and I drove up once to the infamous International Peace Garden, a botanical garden which commemorates the long and peaceful co-existence of the people of Canada and the US. Straddling the cities of Boissevain, Manitoba and Dunseith, North Dakota, we made the two hour drive one spring day not realizing that as far north as we were, nothing much blooms until summer, so we basically drove two hours to see dirt. But what nice dirt it was!
So, I want to share with all of you a few ways in which the people of Canada have made our lives better, and more enjoyable, in case you weren’t aware, like I wasn’t aware.
TOP TEN BEST THINGS TO COME OUT OF CANADA:
1. Superman! Created by Joe Shuster of Toronto in 1938. (Let me speak up now and say that I got all of this information off of a Trivial Pursuit website and if any of it is inaccurate, well, that’s life.) While I don’t personally give two hoots about the Man of Steel, he and all his superhero friends have sure made my son and youngest daughter happy.
2. Long Distance Telephone Calls – made for the first time in 1876 by Alexander Graham Bell (geez, I always thought he was American) between the Ontario communities of Mount Pleasant and Brantford. While I don’t spend quite as much time on it as I did during my teen years, I still really love the phone. Especially my neon green cell one.
3. The Anti-Gravity Suit – invented by W.R. Franks at the University of Toronto in 1940. Well, I’ll be honest, it hasn’t really affected my life much, but I could sure be the life of the party if I brought one of these along!
4. Instant Mashed Potatoes – invented in 1961 by Edward Asselburgs of the Canadian Dept of Agriculture. I’ve never pretended to be Betty Crocker and these little babies have saved me HOURS in the kitchen! Just remember, though, if you’re feeding them to Kendrie during a steroid pulse --- white, with no spices, herbs, or pepper!
5. The Johnny Jumper – a ceiling suspension harness designed by Olivia Poole, mother of 7, to keep babies entertained. Mother of 7???? No wonder she invented it. My only complaint is that they don’t come in versions that will hold a kid who weighs 55 pounds.
6. The numerous people who have contributed to our lives through artistic contributions:
Michael J. Fox (best role ever, the voice of “Chance” in Homeward Bound … not that I’ve seen it about a MILLION times!)
Hume Cronyn (come on, is there *anyone* out there who didn’t love Cocoon?)
Bryan Adams, Alaniss Morissette, and Maynard Ferguson; musicians that I enjoy. Celine Dion, a musician that I DON’T enjoy, but I won’t hold that against anyone in Canada personally.
And yet, hands down, the best things to come out of Canada, at least in my opinion, are the online friendships I have made with other parents of kids with cancer. (Canadian parents, duh, otherwise what would be the point to the list?????) Let me introduce you to a few:
7. Katie, an adorable three year old who was diagnosed in August of 2003. Proud representative of Ottawa!
8. Benjamin, just diagnosed this past January, Benjamin and his family are originally from Australia, but claim Canada as home now. Welcome from your "southern" friends!
9. Lyza, diagnosed in October 2002, Lyza and her family just returned from her Make A Wish trip to DisneyWorld. Hopefully, after visiting Florida, they will think as highly of Americans as I think of her and her family!
10. And the inspiration for this list of all-things Canadian, Julianna Banana and her dad Terry. Terry graciously offered to help me get the music on this site working (shoot, he didn’t just help, he basically did it for me. I’m not sure whether he offered out of the kindness of his heart, or if he simply figured it would be easier to do than take out a restraining order after I sent him 8,000 e-mails begging for technical computer help! I’m so grateful to have music playing on a reliable basis, I’m considering having a tree planted in his honor, or a maple leaf tattood on my …………..no, never mind.) Julianna was dx just a month before Kendrie and in that short time has cultivated a phenomenal fan club on the internet with her witty and inspirational journal messages. Anyone interested in showing support for Julianna and her fight against leukemia can log on to her Caringbridge page and follow the instructions to request one of her Pink Wish Bracelets. Here is a photo showing my and my friend Kelly E., a fellow CB surfer and supporter, wearing our bracelets. Personally, I won’t be taking mine off until both Julianna and Kendrie are done with their treatments and well on their way to planning a Canadian-U.S.-We’ve-Kicked-Leukemia’s-Ass-Reunion!
Photo taken March 17, 2004, Georgia
Please take a minute to stop by these sites and offer the families a word of encouragement.
As for things in the Land of Escoe, this week has definitely been the hardest on Kendrie since getting over induction. We have renamed her “Princess Barfs a Lot and Sleeps Even More” I assume it is the ara-c shots I have been giving her at the house that are causing the reactions. I know her body needs the rest, but two or three naps a day, coming from the child who gave up napping at 20 months, does feel odd. Too bad I can't get her brother and sister to join her, ha!
I want to say a special thank you to all of you who have made comments in our guestbook about living close enough to us to join us for dinner at IHOP, or commiserating in some other fashion. I thought of that yesterday, when Kendrie was on her hands and knees retching in the front yard, and my next door neighbor walked out to the curb to get his mail, glanced our direction, and didn’t even bother to wave. I’ll give him the benefit of the doubt, that perhaps he felt awkward or uncomfortable witnessing first hand that sort of scene, but a simple “Hey, do you need anything?” would have been nice.
Starting Monday, we have the next two weeks OFF from chemo (wahoo, wahoo, it’s a party, wahoo) and except for the antibiotic on the weekends, all we will be doing are local labs for blood counts. I am certainly expecting her numbers to have dropped way down at this point, especially given how tired she is.
So I guess that’s it for now. Just my quick thank-you note to all of Canada (Candian Bacon! How could I have forgotten Canadian Bacon?!?!?!) and all that you’ve done for me personally. Oh, and the only reason I didn't mention my friend Jadine from Canada is because she claims Texas now, but of course she is at the top of the list! If any of you, especially anyone from Canada, have any additions to my list, let me know and I'll add them in! Did I mention I also really like that Twelve Days of Beer song? Weren't those guys Canadian, too?
Have a great weekend, everyone,
Kristie
ps. One last thing. A little boy on my online group, Spencer Rocket who relapsed last month is having a bit of a hard time getting back into remission and is suffering terribly from the side effects of the drugs. His family is hospital bound for quite some time and I know they could use some messages of support and encouragement. Be sure to visit the photo album when you go to Spencer's site.... he is one of the cutest kids I have ever seen! Kerri and Brian, we are thinking of you and praying for Spencer every night!
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I am missing a LOT of good tv time because I keep falling asleep everywhere ….. the sofa, my bed, mom’s bed ….
BEST THING ABOUT HAVING CANCER TODAY: (this time, it’s Kristie talking) The fact that she was sleeping so heavy tonight I was able to give her the shot in her leg without her even waking up! And it’s the last shot for several months --- thank heavens!!!
I realize that title might be a bit misleading, considering we live in middle Georgia and pretty much anyone not residing at Disneyworld is technically a neighbor to our north. But today, specifically, I am speaking of that great country Canada and all it has to offer.
Despite living in Minot, ND for four years, only fifty or so miles from the Canadian border, I’ve not spent much time in the land of Cannuks. Blaine and I drove up once to the infamous International Peace Garden, a botanical garden which commemorates the long and peaceful co-existence of the people of Canada and the US. Straddling the cities of Boissevain, Manitoba and Dunseith, North Dakota, we made the two hour drive one spring day not realizing that as far north as we were, nothing much blooms until summer, so we basically drove two hours to see dirt. But what nice dirt it was!
So, I want to share with all of you a few ways in which the people of Canada have made our lives better, and more enjoyable, in case you weren’t aware, like I wasn’t aware.
TOP TEN BEST THINGS TO COME OUT OF CANADA:
1. Superman! Created by Joe Shuster of Toronto in 1938. (Let me speak up now and say that I got all of this information off of a Trivial Pursuit website and if any of it is inaccurate, well, that’s life.) While I don’t personally give two hoots about the Man of Steel, he and all his superhero friends have sure made my son and youngest daughter happy.
2. Long Distance Telephone Calls – made for the first time in 1876 by Alexander Graham Bell (geez, I always thought he was American) between the Ontario communities of Mount Pleasant and Brantford. While I don’t spend quite as much time on it as I did during my teen years, I still really love the phone. Especially my neon green cell one.
3. The Anti-Gravity Suit – invented by W.R. Franks at the University of Toronto in 1940. Well, I’ll be honest, it hasn’t really affected my life much, but I could sure be the life of the party if I brought one of these along!
4. Instant Mashed Potatoes – invented in 1961 by Edward Asselburgs of the Canadian Dept of Agriculture. I’ve never pretended to be Betty Crocker and these little babies have saved me HOURS in the kitchen! Just remember, though, if you’re feeding them to Kendrie during a steroid pulse --- white, with no spices, herbs, or pepper!
5. The Johnny Jumper – a ceiling suspension harness designed by Olivia Poole, mother of 7, to keep babies entertained. Mother of 7???? No wonder she invented it. My only complaint is that they don’t come in versions that will hold a kid who weighs 55 pounds.
6. The numerous people who have contributed to our lives through artistic contributions:
Michael J. Fox (best role ever, the voice of “Chance” in Homeward Bound … not that I’ve seen it about a MILLION times!)
Hume Cronyn (come on, is there *anyone* out there who didn’t love Cocoon?)
Bryan Adams, Alaniss Morissette, and Maynard Ferguson; musicians that I enjoy. Celine Dion, a musician that I DON’T enjoy, but I won’t hold that against anyone in Canada personally.
And yet, hands down, the best things to come out of Canada, at least in my opinion, are the online friendships I have made with other parents of kids with cancer. (Canadian parents, duh, otherwise what would be the point to the list?????) Let me introduce you to a few:
7. Katie, an adorable three year old who was diagnosed in August of 2003. Proud representative of Ottawa!
8. Benjamin, just diagnosed this past January, Benjamin and his family are originally from Australia, but claim Canada as home now. Welcome from your "southern" friends!
9. Lyza, diagnosed in October 2002, Lyza and her family just returned from her Make A Wish trip to DisneyWorld. Hopefully, after visiting Florida, they will think as highly of Americans as I think of her and her family!
10. And the inspiration for this list of all-things Canadian, Julianna Banana and her dad Terry. Terry graciously offered to help me get the music on this site working (shoot, he didn’t just help, he basically did it for me. I’m not sure whether he offered out of the kindness of his heart, or if he simply figured it would be easier to do than take out a restraining order after I sent him 8,000 e-mails begging for technical computer help! I’m so grateful to have music playing on a reliable basis, I’m considering having a tree planted in his honor, or a maple leaf tattood on my …………..no, never mind.) Julianna was dx just a month before Kendrie and in that short time has cultivated a phenomenal fan club on the internet with her witty and inspirational journal messages. Anyone interested in showing support for Julianna and her fight against leukemia can log on to her Caringbridge page and follow the instructions to request one of her Pink Wish Bracelets. Here is a photo showing my and my friend Kelly E., a fellow CB surfer and supporter, wearing our bracelets. Personally, I won’t be taking mine off until both Julianna and Kendrie are done with their treatments and well on their way to planning a Canadian-U.S.-We’ve-Kicked-Leukemia’s-Ass-Reunion!
Photo taken March 17, 2004, Georgia
Please take a minute to stop by these sites and offer the families a word of encouragement.
As for things in the Land of Escoe, this week has definitely been the hardest on Kendrie since getting over induction. We have renamed her “Princess Barfs a Lot and Sleeps Even More” I assume it is the ara-c shots I have been giving her at the house that are causing the reactions. I know her body needs the rest, but two or three naps a day, coming from the child who gave up napping at 20 months, does feel odd. Too bad I can't get her brother and sister to join her, ha!
I want to say a special thank you to all of you who have made comments in our guestbook about living close enough to us to join us for dinner at IHOP, or commiserating in some other fashion. I thought of that yesterday, when Kendrie was on her hands and knees retching in the front yard, and my next door neighbor walked out to the curb to get his mail, glanced our direction, and didn’t even bother to wave. I’ll give him the benefit of the doubt, that perhaps he felt awkward or uncomfortable witnessing first hand that sort of scene, but a simple “Hey, do you need anything?” would have been nice.
Starting Monday, we have the next two weeks OFF from chemo (wahoo, wahoo, it’s a party, wahoo) and except for the antibiotic on the weekends, all we will be doing are local labs for blood counts. I am certainly expecting her numbers to have dropped way down at this point, especially given how tired she is.
So I guess that’s it for now. Just my quick thank-you note to all of Canada (Candian Bacon! How could I have forgotten Canadian Bacon?!?!?!) and all that you’ve done for me personally. Oh, and the only reason I didn't mention my friend Jadine from Canada is because she claims Texas now, but of course she is at the top of the list! If any of you, especially anyone from Canada, have any additions to my list, let me know and I'll add them in! Did I mention I also really like that Twelve Days of Beer song? Weren't those guys Canadian, too?
Have a great weekend, everyone,
Kristie
ps. One last thing. A little boy on my online group, Spencer Rocket who relapsed last month is having a bit of a hard time getting back into remission and is suffering terribly from the side effects of the drugs. His family is hospital bound for quite some time and I know they could use some messages of support and encouragement. Be sure to visit the photo album when you go to Spencer's site.... he is one of the cutest kids I have ever seen! Kerri and Brian, we are thinking of you and praying for Spencer every night!
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I am missing a LOT of good tv time because I keep falling asleep everywhere ….. the sofa, my bed, mom’s bed ….
BEST THING ABOUT HAVING CANCER TODAY: (this time, it’s Kristie talking) The fact that she was sleeping so heavy tonight I was able to give her the shot in her leg without her even waking up! And it’s the last shot for several months --- thank heavens!!!
Saturday, March 13, 2004
Parenting 101
OK, I need whoever borrowed my “327 Easy Steps to Successful Parenting” book to return it to me as soon as possible, since I appear to have forgotten steps #1 through #326. Step #327….”Just show up for the job on a daily basis”, which I am doing, doesn’t appear to be enough.
I can’t decide what is worse. To be annoyed at a kid who has cancer. To be annoyed at her siblings. To feel guilty for feeling annoyed. To feel annoyed for feeling guilty because they’re acting like brats and they deserve to have me annoyed at them.
Logically, in my head, I don’t think parenting a child with cancer should be done any differently than it was done before the diagnosis. And I was pretty comfortable with my parenting style before, so why am I crazy with indecision now? Why, suddenly, am I a Flying Wallenda of Parenting, walking precariously on a tightrope that stretches across two years of chemotherapy??
Kendrie’s doctor told me, just a few days after we met him for the first time in the hospital, that the worst side effect from leukemia is the spoiling done by the parents, who feel guilty for the cancer ….. and who then wind up raising cancer survivors; albeit bratty, spoiled, whiny cancer survivors. I’m not so much worried my kids will be bratty, spoiled whiners as much as I am worried I might put them on the curb with a “For Sale Cheap” sign around their necks at the rate things are going.
What happened to the promises I made to myself when she was in the hospital those awful first two weeks--- that from now on I would be more patient, and make more time for my kids, and enjoy them more? That if she just came home soon then I would be the kind of parent I know I should be, fun-loving and kind and never frustrated by the daily grind of it all? That I wouldn’t stress about the little things and I would be like the parents I see pictured in Family Fun magazine who are wearing goofy hats and Superman capes and chasing their kids around the house, laughing and waving magic wands. Don’t those little magazine kids ever get on their nerves so bad they just want to pinch their little heads off????
Apparently another side effect from chemo they don’t warn you about is that your child will emotionally regress, at least on occasion, by about half. ‘Cause I’d say Kendrie is definitely acting like a two-year old some days. Granted, when she was first diagnosed and in so much pain …. and then in the following weeks when she was suffering from the steroids, weight gain and initial meds, it was practically impossible for her to walk. So, we carried her everywhere, and willingly. Now she still wants to be carried and it makes me crazy. But I don’t know how bad her legs might really hurt from the chemo, so I carry her, all 35 pounds of her, and then gripe about my recently diagnosed tennis-elbow. In the beginning, we also catered to her steroid-induced, nonstop food cravings. Remember, I had Pizza Hut on speed dial. This morning, I told her she couldn’t have a spoonful of butter for breakfast and she wailed for fifteen minutes. I wanted to throw the tub of Shedd’s Spread at her just to shut her up but thought it was more important that I stand my ground. We wound up compromising on toast with LOTS of butter. Sure, when they're on steroids you give them pretty much what they want. But what about the *rest* of the time???
The poor kid is putting up with so much shit on a daily basis that I do feel the urge to cater to her and make parts of her life --at least the parts that I have control over-- a little easier. But then the voice in the back of my head (one of them; there are several) reminds me that I’m not doing it for Brayden or Kellen, and I’m probably not doing Kendrie any favors. The more you do for them, the more the little rugrats expect it, nay, demand it!
She has begun to point to things and grunt and whine …. My God it is making me insane. We never could stand the pointing and grunting and whining, which is why we taught our kids rudimentary sign-language when they were little. If I didn’t want to hear it from a one-year old, why should I have to listen to it from a four-year old? And tonight she wanted me to come into her bedroom and cover her up with a blanket. So what method did she choose to try and accomplish that? Laying in bed, whining a single solitary syllable louder and louder and louder until I simply could not ignore it any longer. I went to the door of her room and asked her what she wanted.
Kendrie: “whine whine grumble grumble”
Mom: “I’m sorry, I can’t understand you when you whine”
Kendrie: “I’m cold”
Mom: “Well, I’m certainly sorry to hear that. Is there something I can do to help?”
Kendrie “cover me up”
Mom: “you know, there’s a right way and a wrong way to ask for things. Maybe you should try again”
Kendrie: “I want you to cover me up”
Mom: “I want you to cover me up ----- what?” (I was going for “please” here)
Kendrie: “I want you to cover me up now.”
The following are all actual comments, spoken by our family members, in the last 24 hours. See how many comments you can match with the right family member:
1. “Since when do you not like crust on bread?”
“Since I got cancer.”
2. “I’m not making you a waffle until you eat the toast.”
“But the toast is too brown and crunchy”
3. “Kellen is snoring and I can’t sleep with the noise.”
“Kellen is not snoring, he’s simply breathing.”
“Well make him stop”
4. “Uuuuggghh! Why do I have to do EVERYTHING around here?!?!?!?!”(stomp stomp stomp)
5. “Move out of my way, I can’t see the tv!”
“He’s a tattle-teller!”
“Liar!”
“He won’t let me have a turn!”
“It’s not fair!”
“They completely messed up my room!”
“She’s looking at me!”
6. “I’m bored. We haven’t done anything fun today.” (this was after being taken to two city parks, a Burger King with a play-land and a soccer game.)
7. “I WANT MY DADDY!!” (who happens to be in Charleston this weekend.)
8. “Well you can tell her that despite what she thinks the world doesn’t revolve around her and if she wants me to get that for her she needs to quit throwing that little fit and come ask me properly.”
ANSWER KEY:
1. Kristie and Kendrie
2. Kristie and Kendrie
3. Kristie and Kendrie (no big surprises here)
4. Despite what you might think, it wasn't Kristie! Correct answer is Brayden, after being asked to pick up her room.
5. Insert the names of all three children, in any random order.
6. Kellen, ungrateful brat
7. Kendrie (this one doesn't upset me too much because Blaine assures me that when she is with him and he does something to make her angry she yells that she wants me.)
8. ME!
Please, I’m begging you. Return my parenting book to me before DFACS shows up on my doorstep! And if you don’t have my parenting book, any large, hardcover book that I can use to hit myself over the head will do.
Thanks for checking the website, and special thanks to all of you that take the time to sign the guestbook. We really enjoy the messages. :)
love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Well, spring is coming and it's getting a little too hot for my Spiderman cap. My head got REALLY sweaty at Brayden's soccer game today. I am not looking forward to packing away my favorite hat until next winter (when hopefully I will have hair again and maybe not even need a hat!) You can see how much I love this cap in the new pictures mom put up on this page.
BEST THING ABOUT HAVING CANCER TODAY: I finished my sticker chart for all the leg shots my mom gave me this week ... which were not fun at ALL ... no wonder she's not a nurse .... but that means I will get to pick a prize out of the treasure chest at my clinic visit on Monday! And Brayden and Kellen are going with us since they are on Spring Break, yippee!
I can’t decide what is worse. To be annoyed at a kid who has cancer. To be annoyed at her siblings. To feel guilty for feeling annoyed. To feel annoyed for feeling guilty because they’re acting like brats and they deserve to have me annoyed at them.
Logically, in my head, I don’t think parenting a child with cancer should be done any differently than it was done before the diagnosis. And I was pretty comfortable with my parenting style before, so why am I crazy with indecision now? Why, suddenly, am I a Flying Wallenda of Parenting, walking precariously on a tightrope that stretches across two years of chemotherapy??
Kendrie’s doctor told me, just a few days after we met him for the first time in the hospital, that the worst side effect from leukemia is the spoiling done by the parents, who feel guilty for the cancer ….. and who then wind up raising cancer survivors; albeit bratty, spoiled, whiny cancer survivors. I’m not so much worried my kids will be bratty, spoiled whiners as much as I am worried I might put them on the curb with a “For Sale Cheap” sign around their necks at the rate things are going.
What happened to the promises I made to myself when she was in the hospital those awful first two weeks--- that from now on I would be more patient, and make more time for my kids, and enjoy them more? That if she just came home soon then I would be the kind of parent I know I should be, fun-loving and kind and never frustrated by the daily grind of it all? That I wouldn’t stress about the little things and I would be like the parents I see pictured in Family Fun magazine who are wearing goofy hats and Superman capes and chasing their kids around the house, laughing and waving magic wands. Don’t those little magazine kids ever get on their nerves so bad they just want to pinch their little heads off????
Apparently another side effect from chemo they don’t warn you about is that your child will emotionally regress, at least on occasion, by about half. ‘Cause I’d say Kendrie is definitely acting like a two-year old some days. Granted, when she was first diagnosed and in so much pain …. and then in the following weeks when she was suffering from the steroids, weight gain and initial meds, it was practically impossible for her to walk. So, we carried her everywhere, and willingly. Now she still wants to be carried and it makes me crazy. But I don’t know how bad her legs might really hurt from the chemo, so I carry her, all 35 pounds of her, and then gripe about my recently diagnosed tennis-elbow. In the beginning, we also catered to her steroid-induced, nonstop food cravings. Remember, I had Pizza Hut on speed dial. This morning, I told her she couldn’t have a spoonful of butter for breakfast and she wailed for fifteen minutes. I wanted to throw the tub of Shedd’s Spread at her just to shut her up but thought it was more important that I stand my ground. We wound up compromising on toast with LOTS of butter. Sure, when they're on steroids you give them pretty much what they want. But what about the *rest* of the time???
The poor kid is putting up with so much shit on a daily basis that I do feel the urge to cater to her and make parts of her life --at least the parts that I have control over-- a little easier. But then the voice in the back of my head (one of them; there are several) reminds me that I’m not doing it for Brayden or Kellen, and I’m probably not doing Kendrie any favors. The more you do for them, the more the little rugrats expect it, nay, demand it!
She has begun to point to things and grunt and whine …. My God it is making me insane. We never could stand the pointing and grunting and whining, which is why we taught our kids rudimentary sign-language when they were little. If I didn’t want to hear it from a one-year old, why should I have to listen to it from a four-year old? And tonight she wanted me to come into her bedroom and cover her up with a blanket. So what method did she choose to try and accomplish that? Laying in bed, whining a single solitary syllable louder and louder and louder until I simply could not ignore it any longer. I went to the door of her room and asked her what she wanted.
Kendrie: “whine whine grumble grumble”
Mom: “I’m sorry, I can’t understand you when you whine”
Kendrie: “I’m cold”
Mom: “Well, I’m certainly sorry to hear that. Is there something I can do to help?”
Kendrie “cover me up”
Mom: “you know, there’s a right way and a wrong way to ask for things. Maybe you should try again”
Kendrie: “I want you to cover me up”
Mom: “I want you to cover me up ----- what?” (I was going for “please” here)
Kendrie: “I want you to cover me up now.”
The following are all actual comments, spoken by our family members, in the last 24 hours. See how many comments you can match with the right family member:
1. “Since when do you not like crust on bread?”
“Since I got cancer.”
2. “I’m not making you a waffle until you eat the toast.”
“But the toast is too brown and crunchy”
3. “Kellen is snoring and I can’t sleep with the noise.”
“Kellen is not snoring, he’s simply breathing.”
“Well make him stop”
4. “Uuuuggghh! Why do I have to do EVERYTHING around here?!?!?!?!”(stomp stomp stomp)
5. “Move out of my way, I can’t see the tv!”
“He’s a tattle-teller!”
“Liar!”
“He won’t let me have a turn!”
“It’s not fair!”
“They completely messed up my room!”
“She’s looking at me!”
6. “I’m bored. We haven’t done anything fun today.” (this was after being taken to two city parks, a Burger King with a play-land and a soccer game.)
7. “I WANT MY DADDY!!” (who happens to be in Charleston this weekend.)
8. “Well you can tell her that despite what she thinks the world doesn’t revolve around her and if she wants me to get that for her she needs to quit throwing that little fit and come ask me properly.”
ANSWER KEY:
1. Kristie and Kendrie
2. Kristie and Kendrie
3. Kristie and Kendrie (no big surprises here)
4. Despite what you might think, it wasn't Kristie! Correct answer is Brayden, after being asked to pick up her room.
5. Insert the names of all three children, in any random order.
6. Kellen, ungrateful brat
7. Kendrie (this one doesn't upset me too much because Blaine assures me that when she is with him and he does something to make her angry she yells that she wants me.)
8. ME!
Please, I’m begging you. Return my parenting book to me before DFACS shows up on my doorstep! And if you don’t have my parenting book, any large, hardcover book that I can use to hit myself over the head will do.
Thanks for checking the website, and special thanks to all of you that take the time to sign the guestbook. We really enjoy the messages. :)
love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Well, spring is coming and it's getting a little too hot for my Spiderman cap. My head got REALLY sweaty at Brayden's soccer game today. I am not looking forward to packing away my favorite hat until next winter (when hopefully I will have hair again and maybe not even need a hat!) You can see how much I love this cap in the new pictures mom put up on this page.
BEST THING ABOUT HAVING CANCER TODAY: I finished my sticker chart for all the leg shots my mom gave me this week ... which were not fun at ALL ... no wonder she's not a nurse .... but that means I will get to pick a prize out of the treasure chest at my clinic visit on Monday! And Brayden and Kellen are going with us since they are on Spring Break, yippee!
Monday, March 08, 2004
“Pulp Fiction”
2nd Half of DI #1
OK, you know those “FBI Most Wanted” posters that adorn the local post office? Or the handwritten notes you sometimes see on the cash registers of stores about not accepting checks from certain people? Well, I’m pretty sure Kendrie and I are next in line, to have our images plastered in IHOP restaurants nation-wide with a big notice underneath about “Do NOT serve these women in this restaurant!” Or maybe they’ll just put a picture of my big fat head, with a circle and a slash through it.
You see, Blaine and I started a new family tradition this year (is it already a tradition if we just started it? When does something actually *become* a tradition? Sort of like “1st Annual” … how can it be annual, if it’s only the first time?? But I digress………..) of pairing up, one kid with one parent, every Saturday morning for breakfast. We go round-robin, so the kids take turns going one at a time with Blaine for three weeks, then the next three weeks they go one at a time with me. The goal is an hour of uninterrupted time to visit and spend quality time together, just one kid with one parent. The idea behind it is when they become hormone-crazed, drug-addled, psychotic juvenile delinquents; at least the lines of communication will be open!
Saturday was Kendrie’s turn to go to breakfast with me. The kids get to choose the restaurant and for six weeks in a row, each kid has chosen IHOP. That’s fine with me; I like IHOP. So Kendrie and I go, and I asked to be seated as close to the bathroom as possible. (Warning, graphic information ahead) She had had diarrhea for three days at that point and I didn’t want to spend all morning walking through the restaurant if I didn’t have to. The host, a pleasant guy named Jerome, said no problem, and then proceeded to walk us to the booth as far from the bathroom as possible. I said, “I’m sorry, I wanted NEAR the restroom.” He looked at me like, “would you make up your mind, lady?” and moved us. Then he asked us what we would like to drink. This is the conversation, verbatim:
Kristie: “She’ll have chocolate milk and I’d like a large orange juice. Wait. Does the orange juice have pulp in it?”
Jerome: “Pulp?”
Kristie: “yes, pulp”
Jerome: “pulp?”
Kristie, “Yeah, you know, pulp”
Jerome: “pulp?”
Kristie (speaking louder, in case Jerome was hard of hearing) “pulp. PULP. Does the orange juice have PULP in it?”
Jerome: (shrugs shoulders) “Uhhh, you’re asking the wrong person.”
The obvious question should have been, “Well, then who exactly do you suggest I ask?” but instead I just said, “Never mind, water.”
Then our waiter came over and took our order (chocolate chip pancakes, which by the way were FABULOUS if you’re going to IHOP anytime soon.) While we were waiting on our food, Kendrie entertained herself by coloring on the kids’ menu cartoon with the crayons they provided. Or I should say, trying to color. The only gave her gray, green and brown which doesn’t provide a lot of options. We were visiting, running back and forth to the bathroom, waiting politely, and at last the food arrived. I reached across the table to pour syrup on Kendrie’s pancakes, and then made what will go down in history as the smoothest move ever …. Set the syrup bottle down on her crayola masterpiece, getting a single, solitary drop of pancake syrup on the picture and ruining it forever.
Immediately, tears well up and I can see my grave mistake. Despite my assurances that we can get her a new, clean menu on the way out ….. she keeps getting more and more upset. Then, suddenly, with no warning, she went past “fussing” into all-out crying and came around the table to climb in my lap.
I was more than a little bewildered (it’s just a silly menu, after all, with a crummy color selection to begin with) and kept asking her what was wrong. Finally, she whispered in a dramatic stage voice, “Those people are getting too close to me!” I looked around, confused, as the tables on either side of us were empty. “Who are?” I asked. “Those people!! (Pause) I don’t know!” she wailed. “Good heavens, the chemo meds are making her hallucinate!” was my first thought. Just then, our waiter walked past and asked if anything was wrong. “We need a new kids’ menu, please” I said, with a slight look of panic in my eye. He innocently asked, “Oh, is there something wrong with her pancakes?” Kendrie is sobbing, people are staring, and in a voice similar to the one that came out of the little girl on The Exorcist, I hiss, “We don’t need food, just a clean menu”. I could see the thought in his eyes, “Jerome was right… this lady is a nutcase” but he did bring me a clean menu.
Then tonight, on our way home from Atlanta, we stopped for dinner at, you guessed it, IHOP. The thing I love about IHOP is that they serve pretty much everything, 24 hours a day. About the only thing they don’t serve is macaroni and cheese. Tonight for dinner, Kendrie decided she wanted macaroni and cheese. (Sigh.) So the waiter was standing at our table, and I was trying to explain to Kendrie that they didn’t have any mac & cheese. I’m running down the list of the other items she can choose, she’s shaking her head at every one, and the waiter finally says, “I’ll just go get your drinks while you decide” which everyone knows is Waiter-speak for “God, I hate my job and all the stupid people that come in here.”
Kendrie reluctantly agreed to eat mashed potatoes, and I clearly explained to the waiter that I needed them to be served WHITE. No pepper, no peel, no herbs or spices. WHITE. So then of course he brought them out with brown gravy on them and I had to send them back. He did then bring white potatoes, stopping only long enough to spit in them, I’m pretty sure. Then Kendrie didn’t touch the potatoes and only ate the butter that came on the side. Then she decided she wanted ice cream and the waiter looked at me like, “you have GOT to be kidding me!” and I broke down and said, “Hey, she’s on chemotherapy and I let her eat whatever tastes good, just so she eats.” But I still don’t think it bought us much sympathy. Especially when she announced the ice cream was “too cold” and didn’t eat it either. So I figure the next time I go into either of those two IHOPs, I will see my picture on the wall as a mug shot of sorts, and all the waiters will be playing even/odds to see who gets stuck with our table. Good thing there’s a Cracker Barrel just down the road.
Oh, the other interesting thing that happened at IHOP tonight was when a family came in and sat across the room from us. I could see the kids looking at Kendrie, and whispering to their parents, and I’ll admit I was a bit surprised. She had on a hat and I didn’t think it was obvious she was bald, but those kids could tell something was up. Then, when we got up on one of our numerous trips to the bathroom, I realized the guy in the booth behind us was an albino! I don’t know why I think that was so fascinating, except I can only remember seeing an albino one other time in my whole life. And hey, he WAS a lot more interesting looking than a little bald kid.
So our dinner at IHOP capped off a very long day for Kendrie, as she started the second half of her Delayed Intensification phase. The day began with an exam and port access at 8:30, then she had a spinal tap at 9:30, then an hour of iv hydration, then received zofran (anti-nausea drug) and two new chemo meds, cytoxan and cytarabine (both of which disrupt the DNA in cancer cells, preventing reproduction of those cells) followed by three more hours of iv hydration (to prevent possible bladder damage that these drugs can cause). She was tired and grumpy and bored and fussy.
Adding insult to injury was the fact she caught the stomach bug that Brayden and Kellen had last week and has had diarrhea for five days. In fact, she lost three pounds this week because of it. That's ten percent of her body weight, which is quite a bit for a little kid. But the insult came with the discovery that the AFLAC cancer center apparently orders their toilet paper from the "Acme Tree-Bark Company", and it was not a pleasant discovery, let me tell you. So bad, in fact, that I wound up going down to the parking garage to get some extra baby wipes out of the car. But, too little too late and we came home with an additional prescription for butt cream. So I have no doubt that sitting around the clinic for eight hours today didn’t help matters any. Also, once we arrived home she started her 14 days of oral 6-TG, and we’ll be giving her shots for the next three days.
I expressed concern to the oncologist that her counts hadn’t fallen yet. Chemotherapy is a double-edged sword. You want your child to feel well and not suffer too many side effects, but when their blood counts stay high, you worry that the chemo isn’t effective enough. After all, if it’s not even killing off the “good” cells how can it kill off the cancer cells? The doctor’s comment was “Don’t worry, even if her counts haven’t fallen in the first half of DI, you can bet they will in the second half.” So now we’ll wait and see what happens. Cytarabine (the shots we will administer) often causes fever so we have been instructed to watch for that. It also causes nausea so we will be giving anti-nausea medicine half an hour beforehand. But the biggest challenge comes with the oral medication, which must be given on an empty stomach at bedtime, no food or dairy for two hours before or two hours after. Preferably given right before bedtime. If the raw heiney doesn’t push her over the edge, going to bed without her beloved glass of chocolate milk certainly will.
Oh, and speaking of being pushed over the edge, apparently the little rodent who invented the computer virus that wiped out my hard drive last week has an even bigger geek cousin --- who hacked into my Pay Pal account today and bought a thousand dollars worth of Star Wars memorabilia and games with my credit card! Star Wars games!!! I mean, for Pete’s sake, if you’re going to be a thief, be a cool thief and buy big screen TV’s, or clothes, or jewelry. But Star Wars junk????? Come on! Thank heavens the site they ordered from raised a red flag since the person spent over a thousand dollars in less than 24 hours and so the company cancelled all the orders. Pay Pal assures me my card is secure …..
If it gets too crazy, can I call one of you to have dinner with me at IHOP and commiserate?
Kristie
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Spending all stinkin’ day at that clinic! AND! I got a back poke and was supposed to get something out of the treasure box and my mom forgot about it with all the other stuff going on!
BEST THING ABOUT HAVING CANCER TODAY: Doing arts & crafts with Ms. Laura, the child-life specialist. I made a butterfly picture that she is submitting for a cancer-card contest. If they decide to print it, I will send everybody one!
OK, you know those “FBI Most Wanted” posters that adorn the local post office? Or the handwritten notes you sometimes see on the cash registers of stores about not accepting checks from certain people? Well, I’m pretty sure Kendrie and I are next in line, to have our images plastered in IHOP restaurants nation-wide with a big notice underneath about “Do NOT serve these women in this restaurant!” Or maybe they’ll just put a picture of my big fat head, with a circle and a slash through it.
You see, Blaine and I started a new family tradition this year (is it already a tradition if we just started it? When does something actually *become* a tradition? Sort of like “1st Annual” … how can it be annual, if it’s only the first time?? But I digress………..) of pairing up, one kid with one parent, every Saturday morning for breakfast. We go round-robin, so the kids take turns going one at a time with Blaine for three weeks, then the next three weeks they go one at a time with me. The goal is an hour of uninterrupted time to visit and spend quality time together, just one kid with one parent. The idea behind it is when they become hormone-crazed, drug-addled, psychotic juvenile delinquents; at least the lines of communication will be open!
Saturday was Kendrie’s turn to go to breakfast with me. The kids get to choose the restaurant and for six weeks in a row, each kid has chosen IHOP. That’s fine with me; I like IHOP. So Kendrie and I go, and I asked to be seated as close to the bathroom as possible. (Warning, graphic information ahead) She had had diarrhea for three days at that point and I didn’t want to spend all morning walking through the restaurant if I didn’t have to. The host, a pleasant guy named Jerome, said no problem, and then proceeded to walk us to the booth as far from the bathroom as possible. I said, “I’m sorry, I wanted NEAR the restroom.” He looked at me like, “would you make up your mind, lady?” and moved us. Then he asked us what we would like to drink. This is the conversation, verbatim:
Kristie: “She’ll have chocolate milk and I’d like a large orange juice. Wait. Does the orange juice have pulp in it?”
Jerome: “Pulp?”
Kristie: “yes, pulp”
Jerome: “pulp?”
Kristie, “Yeah, you know, pulp”
Jerome: “pulp?”
Kristie (speaking louder, in case Jerome was hard of hearing) “pulp. PULP. Does the orange juice have PULP in it?”
Jerome: (shrugs shoulders) “Uhhh, you’re asking the wrong person.”
The obvious question should have been, “Well, then who exactly do you suggest I ask?” but instead I just said, “Never mind, water.”
Then our waiter came over and took our order (chocolate chip pancakes, which by the way were FABULOUS if you’re going to IHOP anytime soon.) While we were waiting on our food, Kendrie entertained herself by coloring on the kids’ menu cartoon with the crayons they provided. Or I should say, trying to color. The only gave her gray, green and brown which doesn’t provide a lot of options. We were visiting, running back and forth to the bathroom, waiting politely, and at last the food arrived. I reached across the table to pour syrup on Kendrie’s pancakes, and then made what will go down in history as the smoothest move ever …. Set the syrup bottle down on her crayola masterpiece, getting a single, solitary drop of pancake syrup on the picture and ruining it forever.
Immediately, tears well up and I can see my grave mistake. Despite my assurances that we can get her a new, clean menu on the way out ….. she keeps getting more and more upset. Then, suddenly, with no warning, she went past “fussing” into all-out crying and came around the table to climb in my lap.
I was more than a little bewildered (it’s just a silly menu, after all, with a crummy color selection to begin with) and kept asking her what was wrong. Finally, she whispered in a dramatic stage voice, “Those people are getting too close to me!” I looked around, confused, as the tables on either side of us were empty. “Who are?” I asked. “Those people!! (Pause) I don’t know!” she wailed. “Good heavens, the chemo meds are making her hallucinate!” was my first thought. Just then, our waiter walked past and asked if anything was wrong. “We need a new kids’ menu, please” I said, with a slight look of panic in my eye. He innocently asked, “Oh, is there something wrong with her pancakes?” Kendrie is sobbing, people are staring, and in a voice similar to the one that came out of the little girl on The Exorcist, I hiss, “We don’t need food, just a clean menu”. I could see the thought in his eyes, “Jerome was right… this lady is a nutcase” but he did bring me a clean menu.
Then tonight, on our way home from Atlanta, we stopped for dinner at, you guessed it, IHOP. The thing I love about IHOP is that they serve pretty much everything, 24 hours a day. About the only thing they don’t serve is macaroni and cheese. Tonight for dinner, Kendrie decided she wanted macaroni and cheese. (Sigh.) So the waiter was standing at our table, and I was trying to explain to Kendrie that they didn’t have any mac & cheese. I’m running down the list of the other items she can choose, she’s shaking her head at every one, and the waiter finally says, “I’ll just go get your drinks while you decide” which everyone knows is Waiter-speak for “God, I hate my job and all the stupid people that come in here.”
Kendrie reluctantly agreed to eat mashed potatoes, and I clearly explained to the waiter that I needed them to be served WHITE. No pepper, no peel, no herbs or spices. WHITE. So then of course he brought them out with brown gravy on them and I had to send them back. He did then bring white potatoes, stopping only long enough to spit in them, I’m pretty sure. Then Kendrie didn’t touch the potatoes and only ate the butter that came on the side. Then she decided she wanted ice cream and the waiter looked at me like, “you have GOT to be kidding me!” and I broke down and said, “Hey, she’s on chemotherapy and I let her eat whatever tastes good, just so she eats.” But I still don’t think it bought us much sympathy. Especially when she announced the ice cream was “too cold” and didn’t eat it either. So I figure the next time I go into either of those two IHOPs, I will see my picture on the wall as a mug shot of sorts, and all the waiters will be playing even/odds to see who gets stuck with our table. Good thing there’s a Cracker Barrel just down the road.
Oh, the other interesting thing that happened at IHOP tonight was when a family came in and sat across the room from us. I could see the kids looking at Kendrie, and whispering to their parents, and I’ll admit I was a bit surprised. She had on a hat and I didn’t think it was obvious she was bald, but those kids could tell something was up. Then, when we got up on one of our numerous trips to the bathroom, I realized the guy in the booth behind us was an albino! I don’t know why I think that was so fascinating, except I can only remember seeing an albino one other time in my whole life. And hey, he WAS a lot more interesting looking than a little bald kid.
So our dinner at IHOP capped off a very long day for Kendrie, as she started the second half of her Delayed Intensification phase. The day began with an exam and port access at 8:30, then she had a spinal tap at 9:30, then an hour of iv hydration, then received zofran (anti-nausea drug) and two new chemo meds, cytoxan and cytarabine (both of which disrupt the DNA in cancer cells, preventing reproduction of those cells) followed by three more hours of iv hydration (to prevent possible bladder damage that these drugs can cause). She was tired and grumpy and bored and fussy.
Adding insult to injury was the fact she caught the stomach bug that Brayden and Kellen had last week and has had diarrhea for five days. In fact, she lost three pounds this week because of it. That's ten percent of her body weight, which is quite a bit for a little kid. But the insult came with the discovery that the AFLAC cancer center apparently orders their toilet paper from the "Acme Tree-Bark Company", and it was not a pleasant discovery, let me tell you. So bad, in fact, that I wound up going down to the parking garage to get some extra baby wipes out of the car. But, too little too late and we came home with an additional prescription for butt cream. So I have no doubt that sitting around the clinic for eight hours today didn’t help matters any. Also, once we arrived home she started her 14 days of oral 6-TG, and we’ll be giving her shots for the next three days.
I expressed concern to the oncologist that her counts hadn’t fallen yet. Chemotherapy is a double-edged sword. You want your child to feel well and not suffer too many side effects, but when their blood counts stay high, you worry that the chemo isn’t effective enough. After all, if it’s not even killing off the “good” cells how can it kill off the cancer cells? The doctor’s comment was “Don’t worry, even if her counts haven’t fallen in the first half of DI, you can bet they will in the second half.” So now we’ll wait and see what happens. Cytarabine (the shots we will administer) often causes fever so we have been instructed to watch for that. It also causes nausea so we will be giving anti-nausea medicine half an hour beforehand. But the biggest challenge comes with the oral medication, which must be given on an empty stomach at bedtime, no food or dairy for two hours before or two hours after. Preferably given right before bedtime. If the raw heiney doesn’t push her over the edge, going to bed without her beloved glass of chocolate milk certainly will.
Oh, and speaking of being pushed over the edge, apparently the little rodent who invented the computer virus that wiped out my hard drive last week has an even bigger geek cousin --- who hacked into my Pay Pal account today and bought a thousand dollars worth of Star Wars memorabilia and games with my credit card! Star Wars games!!! I mean, for Pete’s sake, if you’re going to be a thief, be a cool thief and buy big screen TV’s, or clothes, or jewelry. But Star Wars junk????? Come on! Thank heavens the site they ordered from raised a red flag since the person spent over a thousand dollars in less than 24 hours and so the company cancelled all the orders. Pay Pal assures me my card is secure …..
If it gets too crazy, can I call one of you to have dinner with me at IHOP and commiserate?
Kristie
#####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Spending all stinkin’ day at that clinic! AND! I got a back poke and was supposed to get something out of the treasure box and my mom forgot about it with all the other stuff going on!
BEST THING ABOUT HAVING CANCER TODAY: Doing arts & crafts with Ms. Laura, the child-life specialist. I made a butterfly picture that she is submitting for a cancer-card contest. If they decide to print it, I will send everybody one!
Tuesday, March 02, 2004
Three Surprising Facts About Parenthood
For those of you that don’t know our family, let me introduce us: There are Blaine and Kristie (that’s me) the “supposed” grownups in the group; Brayden, our oldest daughter who turned seven last month; Kellen, our son who will turn six this month; and of course Kendrie, who celebrated her “half” birthday today, turning four and a half. (When you are this age, the “half” is very important!)
So we have been parents for slightly over seven years. Parenthood is not something we backed into or stumbled into or fell into. It was anticipated, hoped for and worked for. And while we were basically prepared (no stopping on the way home from the hospital for diapers …. We had plenty already!) there were a few things that took me by surprise, no matter how much the veterans of the parenting world tried to warn us.
Surprise Fact #1: You really, truly DO love them more than you thought possible. Parents everywhere (at least the good ones, anyway) understand exactly what I mean. And when your child is diagnosed with a life-threatening illness, that love goes deeper, stronger, more desperate. Of course, the flip side to that is when the dog is barking and the dinner is burning and the kids are fighting and the house is a mess and the phone is ringing and then you step on a lego, one of the really pointy ones that hurt your foot … well, then those same kids can really annoy you more than you thought possible, too, but for the most part, you feel the love.
Surprise Fact #2: They are WAY more work than anyone warned you. Initially I thought it was because we had three kids in two and a half years and once they were out of diapers things would slow down. But we traded diapers for potty training, and went from potty training to pre-school, then to real school, now we’re in Scouts and sports and I serve as a taxicab and helping with homework not to mention the housework and cooking and shopping and the laundry, good GRIEF the never-ending mountains of laundry!!! But of course the minute one of them snuggles on the couch to read a book with you, it’s all worth it. And since Kendrie’s diagnosis, let me just say there has been LOTS more snuggling than there even used to be.
Surprise Fact #3: You worry more than you thought possible, too. Used to be, we worried the “normal” parent worries, about things like saving for college, the state of the world, were they eating enough vegetables, wearing their bike helmets, things like that. Did we worry that one of our children would be diagnosed with leukemia? Nope, never crossed our minds. But it happened, and brought on a whole new set of worries. Short-term worries, not too serious, like Dear GOD don’t let me run out of Mac & Cheese while she’s on a steroid pulse, and, what if her hair grows back in curly and I don’t know how to fix it? Worries about the side effects from chemotherapy. And of course, the biggest, most frightening worry of all, one that all cancer-parents universally share, the worry that the chemo won’t be enough and your child will relapse. Because no matter how much you love them, or how hard you are willing to work, a relapse can happen at anytime, to anyone.
I think this worry is especially strong for me right now due to circumstance: two great kids we have gotten to know online relapsed this past week. That brings the total to six in the five months since Kendrie was diagnosed. And of course, that’s only the six that I know. Obviously there are lots more out there.
Having relapsed, do these kids still have a fighting chance? Of course they do. It’s just that their fight gets harder, longer, more painful. More frightening, and of course, more worry for their parents. If you have time, please stop by their sites and leave a note of encouragement in their guestbooks.
Julianna Banana Julianna was diagnosed with ALL on September 4, 2003 and relapsed less than four months into treatment, on New Years Eve 2003. Julianna’s dad Terry is fast-becoming something of a Caring Bridge comic legend, so visit their site and sign her guestbook, but I warn you to wear Depends as you read back through her journal history. Also consider getting one of her pink wish bracelets, to show your encouragement for Julianna. (I’m waiting patiently for mine to arrive ……….. hint, hint!)
Cameron --Cameron relapsed on December 9, 2003, and is preparing for his upcoming bone marrow transplant, with his brother Chad as his donor. Please stop by their site and wish the family well as they head to Philadelphia for his transplant.
Lakota-- Lakota was originally diagnosed with ALL on September 29, 2002 and relapsed only a few days ago. Sadly, Lakota has already lost a brother to leukemia, so if you could offer the family a note of support at this frightening time, I’m sure it would be greatly appreciated.
Marcus ---Marcus was originally diagnosed on April 4, 2003 and had a bone marrow transplant in August. Marcus relapsed in November at almost 100 days post transplant. Sadly, Marcus contracted chicken pox during this time and was unable to fight off the infection, earning his angel wings on January 14, 2004.
Kevin --Kevin was first diagnosed on February 10, 1998, less than two years after his big brother Brian’s ALL diagnosis. After two and a half years of chemotherapy and over three years off-treatment, Kevin relapsed on October 30, 2003. (Kevin actually relapsed the first day I joined my online support group. I clearly remember logging onto my new list-serve and reading how devastated everyone was, with me still not understanding exactly what was going on.)
Spencer Rocket --Spencer was diagnosed with ALL on Kendrie’s birthday, September 2, 2003. He relapsed just this past week, and his parents are hard at work, investigating their options and gathering information to make their decision about bone marrow transplants vs. cord blood transplants and which will give Spencer the best chance to beat leukemia once and for all.
Please take a minute to stop by all of these sites and wish them well.
I mention these children and their stories to you so you can get a better understanding of life as a cancer parent and how the worry changes from “normal” to “beyond abnormal.” Sometimes I wonder if I will ever be able to relax again. I’m not a worrier by nature and I hate this dark cloud that has descended over me. Most of the time I am able to push it to the back recesses of my mind (or what’s left of my mind) and focus on being cheerful, optimistic and even (dare I say?) poking fun at this whole cancer ordeal. But a cancer parent never completely escapes it. Kendrie has cried the last two days that her legs hurt, which was her primary complaint at the time of diagnosis. She climbed into bed with us last night and whimpered throughout most of the night despite the pain medication we gave her. What are the side effects of the chemo drugs she is on right now? Bone and joint pain. I lay in bed last night, willing my imagination not to go the direction it was going, reminding myself that aches and pains are a normal part of chemotherapy. But does that mean I can let the worry go? I’m afraid the answer to that question is going to be NEVER.
I’ve read in books that parents can come to resent the worry, and go so far as to become angry with one another, or even the child, for “making” them worry so much. I can’t imagine doing that, so I think for now I’ll concentrate on disliking my hairdresser, since she’s the one who’s going to get rich off of cancer, as I will have to pay her so much to color my hair and hide all the gray that’s come up in the last five months. :)
Speaking of dislike, I have to say that I am really annoyed at whoever the little rodent was that invented the mydoom virus. I won’t go into great detail except to say that if you’ve sent me a private e-mail in the past few weeks and haven’t gotten an answer from me, you won’t now either because my entire hard drive was erased. Adding insult to injury, I had to PAY someone to erase the hard drive! So please forgive me while I get my system back up and running again.
On a more cheerful note, thanks to Daisy Troop 121 of Bellbrook, Ohio for the great care package they sent to Kendrie. She and her brother and sister hadn’t yet discovered pop-rocks, so that was a huge treat! And special thanks to their leader, Julie M, who not only organized the care package and cards, but was inspired to donate blood for the very first time! Way to go, Julie!
And thanks also to Brianna R of Pflugerville, TX for finishing the CB List of 100. I meant to congratulate her several entries ago, so hopefully better late than never. Thanks, Brianna, for taking the time to visit all those sites.
And thanks to all of you for letting me share my worry with you tonight. I’ll down a couple of pounds of leftover Valentines chocolate and come back more chipper next time.
Love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My legs are really achy and my hands are trembling like a little old lady's!
BEST PART ABOUT HAVING CANCER TOAY: I didn't have to have a needle stick today! (Hey, it might not sound like much to you, but after the trauma I felt having blood drawn yesterday, having today *off* was a huge plus!
So we have been parents for slightly over seven years. Parenthood is not something we backed into or stumbled into or fell into. It was anticipated, hoped for and worked for. And while we were basically prepared (no stopping on the way home from the hospital for diapers …. We had plenty already!) there were a few things that took me by surprise, no matter how much the veterans of the parenting world tried to warn us.
Surprise Fact #1: You really, truly DO love them more than you thought possible. Parents everywhere (at least the good ones, anyway) understand exactly what I mean. And when your child is diagnosed with a life-threatening illness, that love goes deeper, stronger, more desperate. Of course, the flip side to that is when the dog is barking and the dinner is burning and the kids are fighting and the house is a mess and the phone is ringing and then you step on a lego, one of the really pointy ones that hurt your foot … well, then those same kids can really annoy you more than you thought possible, too, but for the most part, you feel the love.
Surprise Fact #2: They are WAY more work than anyone warned you. Initially I thought it was because we had three kids in two and a half years and once they were out of diapers things would slow down. But we traded diapers for potty training, and went from potty training to pre-school, then to real school, now we’re in Scouts and sports and I serve as a taxicab and helping with homework not to mention the housework and cooking and shopping and the laundry, good GRIEF the never-ending mountains of laundry!!! But of course the minute one of them snuggles on the couch to read a book with you, it’s all worth it. And since Kendrie’s diagnosis, let me just say there has been LOTS more snuggling than there even used to be.
Surprise Fact #3: You worry more than you thought possible, too. Used to be, we worried the “normal” parent worries, about things like saving for college, the state of the world, were they eating enough vegetables, wearing their bike helmets, things like that. Did we worry that one of our children would be diagnosed with leukemia? Nope, never crossed our minds. But it happened, and brought on a whole new set of worries. Short-term worries, not too serious, like Dear GOD don’t let me run out of Mac & Cheese while she’s on a steroid pulse, and, what if her hair grows back in curly and I don’t know how to fix it? Worries about the side effects from chemotherapy. And of course, the biggest, most frightening worry of all, one that all cancer-parents universally share, the worry that the chemo won’t be enough and your child will relapse. Because no matter how much you love them, or how hard you are willing to work, a relapse can happen at anytime, to anyone.
I think this worry is especially strong for me right now due to circumstance: two great kids we have gotten to know online relapsed this past week. That brings the total to six in the five months since Kendrie was diagnosed. And of course, that’s only the six that I know. Obviously there are lots more out there.
Having relapsed, do these kids still have a fighting chance? Of course they do. It’s just that their fight gets harder, longer, more painful. More frightening, and of course, more worry for their parents. If you have time, please stop by their sites and leave a note of encouragement in their guestbooks.
Julianna Banana Julianna was diagnosed with ALL on September 4, 2003 and relapsed less than four months into treatment, on New Years Eve 2003. Julianna’s dad Terry is fast-becoming something of a Caring Bridge comic legend, so visit their site and sign her guestbook, but I warn you to wear Depends as you read back through her journal history. Also consider getting one of her pink wish bracelets, to show your encouragement for Julianna. (I’m waiting patiently for mine to arrive ……….. hint, hint!)
Cameron --Cameron relapsed on December 9, 2003, and is preparing for his upcoming bone marrow transplant, with his brother Chad as his donor. Please stop by their site and wish the family well as they head to Philadelphia for his transplant.
Lakota-- Lakota was originally diagnosed with ALL on September 29, 2002 and relapsed only a few days ago. Sadly, Lakota has already lost a brother to leukemia, so if you could offer the family a note of support at this frightening time, I’m sure it would be greatly appreciated.
Marcus ---Marcus was originally diagnosed on April 4, 2003 and had a bone marrow transplant in August. Marcus relapsed in November at almost 100 days post transplant. Sadly, Marcus contracted chicken pox during this time and was unable to fight off the infection, earning his angel wings on January 14, 2004.
Kevin --Kevin was first diagnosed on February 10, 1998, less than two years after his big brother Brian’s ALL diagnosis. After two and a half years of chemotherapy and over three years off-treatment, Kevin relapsed on October 30, 2003. (Kevin actually relapsed the first day I joined my online support group. I clearly remember logging onto my new list-serve and reading how devastated everyone was, with me still not understanding exactly what was going on.)
Spencer Rocket --Spencer was diagnosed with ALL on Kendrie’s birthday, September 2, 2003. He relapsed just this past week, and his parents are hard at work, investigating their options and gathering information to make their decision about bone marrow transplants vs. cord blood transplants and which will give Spencer the best chance to beat leukemia once and for all.
Please take a minute to stop by all of these sites and wish them well.
I mention these children and their stories to you so you can get a better understanding of life as a cancer parent and how the worry changes from “normal” to “beyond abnormal.” Sometimes I wonder if I will ever be able to relax again. I’m not a worrier by nature and I hate this dark cloud that has descended over me. Most of the time I am able to push it to the back recesses of my mind (or what’s left of my mind) and focus on being cheerful, optimistic and even (dare I say?) poking fun at this whole cancer ordeal. But a cancer parent never completely escapes it. Kendrie has cried the last two days that her legs hurt, which was her primary complaint at the time of diagnosis. She climbed into bed with us last night and whimpered throughout most of the night despite the pain medication we gave her. What are the side effects of the chemo drugs she is on right now? Bone and joint pain. I lay in bed last night, willing my imagination not to go the direction it was going, reminding myself that aches and pains are a normal part of chemotherapy. But does that mean I can let the worry go? I’m afraid the answer to that question is going to be NEVER.
I’ve read in books that parents can come to resent the worry, and go so far as to become angry with one another, or even the child, for “making” them worry so much. I can’t imagine doing that, so I think for now I’ll concentrate on disliking my hairdresser, since she’s the one who’s going to get rich off of cancer, as I will have to pay her so much to color my hair and hide all the gray that’s come up in the last five months. :)
Speaking of dislike, I have to say that I am really annoyed at whoever the little rodent was that invented the mydoom virus. I won’t go into great detail except to say that if you’ve sent me a private e-mail in the past few weeks and haven’t gotten an answer from me, you won’t now either because my entire hard drive was erased. Adding insult to injury, I had to PAY someone to erase the hard drive! So please forgive me while I get my system back up and running again.
On a more cheerful note, thanks to Daisy Troop 121 of Bellbrook, Ohio for the great care package they sent to Kendrie. She and her brother and sister hadn’t yet discovered pop-rocks, so that was a huge treat! And special thanks to their leader, Julie M, who not only organized the care package and cards, but was inspired to donate blood for the very first time! Way to go, Julie!
And thanks also to Brianna R of Pflugerville, TX for finishing the CB List of 100. I meant to congratulate her several entries ago, so hopefully better late than never. Thanks, Brianna, for taking the time to visit all those sites.
And thanks to all of you for letting me share my worry with you tonight. I’ll down a couple of pounds of leftover Valentines chocolate and come back more chipper next time.
Love, Kristie
######################################################
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My legs are really achy and my hands are trembling like a little old lady's!
BEST PART ABOUT HAVING CANCER TOAY: I didn't have to have a needle stick today! (Hey, it might not sound like much to you, but after the trauma I felt having blood drawn yesterday, having today *off* was a huge plus!
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