"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
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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???

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
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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!

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!!

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
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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!

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!
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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!!!

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!

“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
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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!

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!

FAQ RE ALL

Q. What, exactly, is leukemia?

"Well, to be honest, it’s pretty much the biggest suck-fest our family has ever faced. ---- Oh, you wanted the medical definition? Well, in that case, leukemia is cancer of the blood forming tissues that make up the bone marrow inside the large bones. The diseased bone marrow then floods the body with abnormal white cells. These cells do not perform the infection fighting functions of healthy, mature white cells. In addition, production of red cells, which carry oxygen, and platelets, which help prevent bleeding, is decreased. Around our house, in laymen’s terms, leukemia is “sick blood”."

Q. Are there different types of leukemia?

"Why, funny you should ask! Yes, there are. Childhood leukemia is different than adult leukemia, and even childhood leukemia can be broken down into several different types."

Q. What type does Kendrie have?

"She has ALL, which stands for Acute Lymphoblastic (or Lymphocytic) Leukemia. Basically, fast acting, and ugly. But I think all leukemias are ugly, so maybe I’m not the best person to explain. 75% of children with leukemia have ALL. It’s always nice to be part of the popular crowd, don’t ya think?"

Q. When will Kendrie be in remission?

"Kendrie was in remission by Day 14 of her chemotherapy regimen. Remission is achieved when all signs and symptoms of leukemia disappear and abnormal cells are no longer found in the blood, bone marrow, or cerebrospinal fluid. Now we can focus on the fun stuff, like the side effects from chemo." (she said with a lilting laugh …. NOT!)

Q. As long as she is in remission, why does she still have chemotherapy?

"Despite being in remission, if chemotherapy were to be stopped now, it is definite that the leukemia would return. Discontinuation of treatment would be fatal."

Q. Well, holy crap, isn’t there EVER any good news at your house?

"Why, yes there is. At some point in time (opinions vary, but we’re talking ball-park a few years after treatment ends) Kendrie will be considered “cured”. That means that the risk of the original disease returning is no greater than the risk faced by all healthy children of developing the same disease."

Q. So, then you can quit worrying?

"Does the phrase 'when monkeys fly out of my butt' mean anything to you?"


Q. So, how long is treatment, anyway?

"For kids with standard risk ALL, like Kendrie, there are several treatment options with different protocols, but generally speaking, treatment lasts two years, two months for girls, and three years, two months for boys."

Q. Why is treatment longer for boys?

"Because they’re stinky."

Q. Will Kendrie ever have to have a bone marrow transplant, or one of those con-tro-vers-ial cord blood transplants we keep hearing about?

"Hopefully not. Barring any complications or relapse, Kendrie’s chemotherapy regimen should be enough to win this battle. For kids on higher risk protocols, or those that relapse, other treatment options can include one or more of the following: increased chemo, bone marrow transplant (BMT), peripheral blood stem cell transplant (PBSCT), or radiation therapy."

Q. How can I help?

"OK, so maybe you didn’t really ask this question, but I’m going to tell you anyway. Donate blood. As often as possible. And consider signing up with the American Bone Marrow Registry. Call 1-800-745-2452 or visit American Bone Marrow Registry for more information.

“A journey of a thousand miles begins with a single rest room stop.”

Ok, so here’s the deal. We live approximately one mile from the interstate, and the Scottish Rite AFLAC Cancer Center in Atlanta, where Kendrie receives her outpatient chemotherapy, is also approximately one mile from the interstate. There are 110 interstate miles in between. Now, I’m no math genius, but I did take Pre-Algebra in 8th grade. So as best I can figure, with an average highway speed of 72 mph, it should take 92 minutes to get from point A (our house) to point B (the clinic). And the same hour and a half to return home, wouldn’t you think?

So why is it always double that every time we make the trip? Could someone please explain that to me? What law of forward motion isn’t working for us???? I’m guessing there might be a problem with our method of travel, so I thought I would recant our journey today for you, in the hope that someone out there can give me some guidance and suggestions for improvement. Here’s how it went:

12:10 pm -- Make sure everyone uses bathroom before leaving house. Get Kendrie settled in back seat; offer three kinds of crackers, open package she chooses, make sure she can reach her juice, get DVD ready (fast forward through previews and hit play) --- ok? I think we’re ready to go!

12:15pm -- Leave Home, Mile 0

12:20 pm -- Arrive at Bank to withdraw cash so you can get through toll road

12:30 -- Get on Interstate, Mile 1, “Freaky Friday” playing on the DVD

Now let me explain something before I go any further with this story. We drive a mini-van, similar to the millions of others out there on the road. Behind the driver’s seat is a bucket seat where Kendrie normally sits in her car seat. Brayden and Kellen sit on the bench in the very back in booster seats. The bucket seat behind the passenger’s seat has been removed and is in the garage, sitting in a corner. We leave that space open for book-bags, groceries, etc. It’s nice to have extra room with three kids getting in and out of the van all day.

When we drive to and from Atlanta, however, Kendrie prefers to sit in the back seat, so she has more room for her books, toys, snacks, etc. I think that’s a reasonable request. We have a portable DVD player that I attach to the seat kitty-corner in front of her, that she can’t reach to operate herself. And she and I can’t reach each other. Just needed to clear that up, so you have a mental image of my tale of woe.

Mile 15 -- Child wants another package of crackers but can’t open them herself. You instruct her to toss them up to you, which she does successfully.

Mile 16 -- Veer wildly across interstate as you try to open the package of crackers, a task requiring Herculean strength and both hands. What is this package…childproof?

Mile 16 and a half -- Succeed in opening crackers, veer back the other way on the highway as you twist around in the drivers seat and toss the crackers back to the child.

Mile 17 -- Bad aim, miss target, crackers wind up in back end of van near the folding chairs.

Mile 18 -- Repeat with last remaining package of crackers, fortunately successful this time and child begins to eat crackers, offering ten minutes of peace and quiet.

Mile 39 -- Child needs to stop and use restroom. Pull over, go to McDonalds to use bathroom, child declares she is still hungry and wants a Happy Meal. Stand in line, buy Happy meal, discover child is really not hungry, just wanted the Lion King toy inside the Happy Meal. Decide since you are pulled over anyway, might as well top off the gas tank so you don’t have to stop later when it is dark. Finish pumping gas, get the DVD player ready to go again (the only bad thing about DVD players, or at least OUR DVD player, is that every time I turn off the ignition, the movie stops. When I start the car again, it starts over at the beginning. So I have to fast-forward to find the part where we left off.) Finally, everyone settled, hit the highway again.

Mile 40 -- console child who discovers Happy Meal Toy is a cheap piece of crap that doesn’t work the way it is supposed to.

Mile 59 -- pull over so YOU can use the restroom. Curse the 24 ounce bottle of water you drank after walking on the treadmill this morning.

Mile 79 -- pull over to put emla cream on port, approximately 2pm, one hour before appointment time.

Mile 110 -- arrive at clinic at 2:45 pm for 3pm appointment. Whew! You just made it!

3pm scheduled appointment time; sit in waiting room until 3:15 pm, smile politely at the lady sitting next to you who is complaining about her thirty minute drive across town.

3:30 pm -- Have exam, get port accessed, receive chemo, etc. all of which lasts approximately one and a half hours. Entertain yourself and your child by watching “Free Willy” on the vcr in the exam room.

5pm -- chemo finished, ok to leave clinic. Child is upset that Willy might not actually be freed, sit in room another 25 minutes to watch end of movie, assuring everyone that whale poachers are indeed the bad guys.

5:25 pm -- leave clinic, waving goodnight to the cleaning crew.

5:27 -- groan inwardly as child selects “Beethoven’s 5th” for driving-home-movie. Not only will you have to listen to that obnoxious little girl whine “Uncle Freddy! Uncle Freddy!” a million times, but this movie doesn’t allow you to fast forward through the previews. So you sit through the previews, all of which you hate, until you can push play.

5:30 -- pull onto Interstate, Mile 0.

6pm -- you’ve been traveling in Atlanta rush hour traffic for half an hour and have gone nine miles. Decide to cut your losses and pull over for dinner. Endure the slowest service, ever, in the history of the planet, at Red Lobster.

Mile 9 -- 7:30 pm, FINALLY get your check and can pay and leave, taking the leftover yummy cheese biscuits, which child loved, in a small to-go box.

Mile 9 and a half -- child drops sippy cup of apple juice and starts crying. Convince child to wait until Mile 25 before you get onto slower interstate to pull over. Child also upset because she can’t open the to-go box in order to eat the biscuits.

Mile 25 -- pull over. Find sippy cup which has somehow rolled under driver’s seat. Figure since you’re crawling around anyway, locate package of wayward crackers in case child gets hungry later. Double and triple check with child that she doesn’t need to go potty, since you are pulled over anyway. Child assures you she does not need to go. After you get back in the drivers seat, child realizes she can’t find the crappy Happy Meal toy from earlier and you have to get out again and go back there and find it for her.

Mile 30 -- pull over so child can go to restroom. Sit through stupid pre-views again since DVD player went back to the beginning when you turned off the ignition. Find correct place on movie. Get back on the highway.

Mile 38 -- pull over to buy child a pop since she doesn’t want the damn apple juice anyway.

Mile 53 -- realize you should have bought yourself a pop, too, since you need to take some aspirin at this point. Luckily, when you pull over at a gas station, child announces she has to go to the bathroom again. Aha! For once, killing two birds with one stone. Get out of van, admire wild cat in parking lot. Pray wild cat isn’t rabid. Use restroom, buy pop, get back in van, sit through that idiotic “Johnny English” preview for the third time (How I dislike Rowan Atkinson!) get the dvd player ready and the movie in the right place, get back on the highway.

Mile 70 -- wonder why your aspirin isn’t working.

Mile 71 -- realize you forgot to take the aspirin.

Mile 109 -- 9:20 pm, child falls asleep.

So, suggestions anyone?? Besides Depends???

Wish us luck, we’re back on the steroids. Kendrie’s counts were good today, so her doctor is hopeful that she’ll get through this harsh DI phase with little problem. Had her numbers been low today, he said typically that would indicate a probable hospital stay by the end of the week. Since her ANC was 1490, which is still reasonably high, especially considering all the chemo she’s been getting, we’re hoping to avoid going inpatient. Brayden came home from school today with an upset stomach again, this time complete with fever, so we’ll have to keep the two of them apart as best we can for the next few days.

We don’t have to go back to Atlanta for two weeks which is great, because we get out of the drive, (SEE ABOVE) but also a little scary since her bloodwork will be done on base next Monday, for the first time since she was diagnosed. It will be the first blood draw from her arm since she was so traumatized at the beginning. They have been able to use her port every time since it was accessed for meds anyway. Just going to the lab to ask them a question about it the other day, she started crying. Yikes, wish us luck!

Thanks for checking the site and signing the guestbook. I know I sound like a broken record, but we really get a kick out of reading the messages.

Take care, Kristie
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KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: I wasn't home and didn't get to eat any of the CHEESY lasagna that Ms. Erin brought us! But Dad and the kids say thank you!

BEST THING ABOUT HAVING CANCER TODAY: For once, I was on the "giving" end at the clinic and got to put the new toys we bought in the treasure box, for the other kids who are getting back pokes and leg pokes this week, poor saps. I've been there, and know their pain! Hey, Madie, if you're going to clinic this week, tell Ms. Laura you want in the treasure box --- all those glitter wands are from me!! Grab you one, girlfriend!

Prognosis: FAIR

Week #2 of Delayed Intensification #1

Let’s see, when I last exited this journal, we had just begun our journey into pill-taking Hell and couldn’t find our way out with a blowtorch and pith helmet. I’m a little embarrassed to admit that Friday morning I left for a four-day scrapbooking retreat and abandoned Blaine to figure out the best way to get the rest of the steroids in her. We did try gelcaps and I think those will work with more practice, but for the rest of the week, the method that worked best was crushing the pill, mixing it with a teaspoon of applesauce and a heaping teaspoon of sugar. And then Blaine wondered why she was too wound up to go to bed……

We had really psyched ourselves up for the mood swings and huge appetite that normally accompany steroids, and then high-fived ourselves when it didn’t happen. Of course, we forgot that steroids take a few days to clear out of a person's system, and the last few days haven’t exactly been rainbows and bunnies.

Monday night Kendrie and I were in the hotel restaurant, ordering dinner. She insisted on a grilled cheese sandwich, but then wouldn’t eat it because it was “too brown”. She did, however, LOVE the cheese sticks I ordered for an appetizer. However, she proceeded to peel all the breading off and just eat the cheese. So basically I paid $5.69 for four ounces of melted mozzarella. Then she insisted on another helping and knowing that money falls from trees, I ordered it. Naturally, she didn’t want it once it arrived. We left it on the table so the uneaten grilled cheese wouldn’t be so lonely.

Tuesday night we went out to dinner for Brayden’s birthday. While ordering the cheese stick appetizer, I turned to Blaine, in a smug and superior manner, and told him to watch how much Kendrie loves them. Yep, you guessed it, she wouldn’t take a single bite. Then it was “noodle soup” three or four times a day, and this morning she wanted Cheerios. Adamantly. And of course we were out. I offered Rice Crispies and Rice Chex, but were either of those good enough? No! The realization that I wasn’t going to pull a magical, hidden box of Cheerios out from behind my ear was enough to bring on the first, full-fledged tantrum.

There are three basic rules that the entire human race should follow in the pursuit of happiness. Rule one, never stand downwind of someone who spits when they talk. Rule two (for ladies only) never assume the toilet seat is down during the middle of the night. And Rule three, NEVER argue with a child on steroids. Even residual steroids. So being the rule-follower that I am, I told Kendrie to give me five minutes to put on my shoes and brush my hair, then we would go to the grocery store and buy the cereal.

As you might have guessed, during that five-minute span my older daughter’s school called to tell me she had a stomach virus and needed to be brought home. So there I am, in the middle of the school parking lot, with one daughter clutching her abdomen and groaning there was no way she could go to the store, and a VERY persistent four-year old who was NOT giving up on those Cheerios! What’s a caring mom to do? Yep, call her husband and make him cancel his lunch plans to drive all the way across town to buy Cheerios. If someone would invent a drive-through grocery store, they would make a mint.

So, the Cheerios bought us an hour or so of good behavior, then we had the inevitable meltdown. Are you ready for this? Kendrie said I wasn’t attending to business in the bathroom (ie., wiping her bottom) fast enough and that she was missing “Max and Ruby”, heaven forbid! She went into complete hysterics that I wasn’t faster, and wound up lying on the hall floor, crying, screaming, and kicking her legs for twenty minutes. Pointing out to her that actually this tantrum was the reason she was missing “Max and Ruby” seemed kind of useless, so I just sat there for a while. Then I called Blaine and held up the phone so he could enjoy the concert as well. (Poor guy can’t catch a break, even at work!) Finally, when the screams were less frantic and I could hear the huge gulps of air in between, with the quivering sobs starting, I picked her up, carried her to the chair, and rocked with her until she was calm again. I’m hoping the ‘screaming baby’ border I added to the site is only temporary. Although getting to rock and cuddle with her afterwards is almost worth enduring the tantrum.

I’m guessing all the steroids will be out of her system just in time for us to start taking them again next Monday. But we’ve bought mini m&m’s for her to practice pill-swallowing and are hopeful we can at least avoid THAT part of the drama.

I probably could have sat back and laughed at all of this (after all, there are days I want to lay on the hall floor and kick my legs, too) but I had something happen today that made everything more realistic. I was filling out some paperwork for insurance, and had copies of her medical records from the oncologist. Being the proactive parent that I am (ie., nosy) I was reading all of her records. There were no surprises in there until I reached the final page, with the physician’s over-all diagnosis and assessment, and there, on the line following the word “Prognosis”, was FAIR. FAIR? That really caused me to catch my breath because of course I’m still holding on to the 80-85 percent survival rate that we are all quoted.

FAIR. Wow, that really hurts.

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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY:

I wouldn’t have thought it was possible for Mom to douse me with Purell any more than she already does, but when my sister came home from school with some sort of upset stomach, I think my mom was looking to set up an IV line of antibacterial soap on all of us! Geez, mom, relax!

BEST THING ABOUT HAVING CANCER TODAY:

For once, mom was force-feeding someone else in the family medicine instead of me!

“A” list of Emotions (aka) 24 Hours in the Life of a Cancer Mom

So here we are, finished with day 4 of Delayed Intensification. Except for one glaring exception, mentioned later, things are going just fine. Kendrie’s visit on Monday was good; spinal fluid clear (sigh of relief) and home at a reasonable hour. Thanks once again to Nadine M. for bringing us dinner (I know you’ve got to be sick of cooking for us!) Kendrie got sick from the meds for the first time, but didn’t let it slow her down. Today’s visit was ok, too; not as bad as I feared regarding the shots. I warned her ahead of time and she certainly wasn’t happy about it, but we suffered through and five minutes later she was fine again.

I’ve been giving you Kendrie’s perspective in recent journal entries, and thought today that I would give you my emotions, instead, regarding this crazy cancer world. Or maybe the world isn’t crazy, but I am. The jury is still out. Beginning last night, and all beginning with the letter “A”.

Kendrie has taken to falling asleep with Blaine and me in our bed. She loves it, we don’t, but we’re suckers the past few months. Then we just take her back to her bed once she’s asleep. So last night we’re laying there giggling, and I said something along the lines of “I would kick you out of this bed right now except I love you so much” and she said, “Do you love me?” and I laughed and said of course. Then she said, in this teeny tiny voice, “Even though I have leukemia?” and it almost took my breath away. So I said, “of course even though you have leukemia” and then she asked, “Even though I’m bald-headed?” Anguish might be too strong of a word, but it’s the closest “A” word I could come up with to describe the feeling in the pit of my stomach, that my child would even be in the situation of having to wonder these things.

Today began with Kendrie and me preparing to leave for Atlanta. She was complaining that her hands were cold (yes, even in Georgia it gets chilly enough for gloves) and I made the comment that I couldn’t find gloves this year that were small enough for her hands, but that NEXT winter, when we would be driving to Atlanta, her hands might be big enough. It was like a punch in the stomach, “oh my God, we’ll still be doing this a year from now.” And then the Part 2 of the 1-2 Punch, “and we’ll still be doing this the winter after THAT” For just a moment, there was a feeling of Abject Misery, at how much this just sucks. Just as quickly though, that was replaced with feeling Ashamed, thinking that I should count myself lucky we have this treatment to try. Thinking of the parents who have lost children to this disease, and how they would probably give anything to be still taking their kids to treatment.

At the clinic today, Kendrie had to be observed for an hour and a half after the shots, to make sure she didn’t have any reaction to the medication. We were hanging out in the playroom, painting, and all of a sudden I hear the clinic staff break into song, “For he’s a jolly good fellow”. Turns out, one of the kids at the clinic was having his last day of chemo today, and then would be officially OT (off-treatment). It’s a really huge deal, and the staff takes photos, has balloons, etc. I sat there for a minute, feeling in Awe for this boy and his family, and all they must have been through to reach this milestone. Can you even imagine the sense of Accomplishment that must come with that? And I’ll admit I felt A Little Bit Envious, wishing we were at the end of treatment, also.

Kendrie was sort of limping around the clinic, holding her thighs, and another mom looked over and said sympathetically, “did she get her Peg shots today?” I can’t tell you the sense of Affinity I felt to this woman, an Alliance of sorts, as we sat and compared stories. I have a fabulous online support group, and friends and family all over the country who care about us and are wonderful. But this was the first time I had sat down, face to face, with someone who was going through the exact same thing. It was a real pick-me-up when I needed one.

I also felt Affected as she told me about her brother who died from leukemia some 40-odd years ago. Given one shot of vincristine at the time of diagnosis and sent home with a prescription for steroids-- it makes my stomach ache to think how leukemia was a death sentence years ago, and makes me feel such immense Appreciation at how far research and treatment have come, for kids like Kendrie, who now have a fighting chance.

Then, the journey home. Let me say first of all that I feel Amazement for all the people who drive daily in the Atlanta rush hour traffic and haven’t suffered an Aneurysm, because I sure thought I was going to.

There was the feeling of Aggravation, when Kendrie informed me that NONE of the dvd’s I brought to watch in the van were “good”. Apparently, Spirit, Like Mike, and The Lion King all have issues with the heroes being either orphaned, or somehow separated from their families. Kendrie told me they were all “bad” movies for that reason and would only watch the one other movie I brought, The Sandlot. So we watched it. Four. Times. I used to really like that movie, but after the fourth time in a row, even the hysterical swimming pool scene with Squints and Wendy Pfeffercorn failed to amuse me.

Then, the Annoyance that I felt when Kendrie swore that the scrambled eggs she got at IHOP for dinner were manna from Heaven and her life would be over if she didn’t get a second helping. So, being the good mom that I am, I flag down the waitress and order another scrambled egg, only to have Kendrie take one bite and tell me she was full. I don’t think this is a cancer issue as much as it is a 4-yr old issue, but it got on my nerves just the same.

And, what day would be complete without a rousing bout of Anger. It’s probably very un-PC for me to admit that I got angry with my Cancer-kid, and DFACS will most likely show up on my doorstep tomorrow morning for putting this out in public, but tonight’s decadron episode very likely made my “Top 5 All Time Most Irrationally Angry At My Kids”--list. We started our steroid pulse on Monday and I was prepared for the increased appetite and mood swings, neither of which have happened yet. What I was NOT prepared for was her completely balking at taking the damn meds! A wise parent once told me you cannot force a child to eat, sleep, or poop. Let me just add “take steroids” to that list.

It took Blaine and me (are you ready for this?) an HOUR and FORTY-FIVE MINUTES to get one stinking pill down her tonight. Her resistance has gotten worse each dose, but tonight’s was over the top. The first half hour was her pursing her lips, holding her hands over her mouth and shaking her head. She was so wound up, crying and fussing and fighting and thrashing, that when we finally got it down her, she threw it right back up. And the next time. AND THE NEXT. How do you explain to a 4-yr old that skipping a dose is NOT an option? We crushed the pill, we tried the pill whole, we used applesauce, yogurt, pudding and kool-aide. There was bribery, pleading, tears, whining, begging, threatening – all to no avail. Then Blaine tried logic and reasoning – who was he kidding? Finally we got her to swallow a pill and not vomit it back up. Thank goodness, since she was running out of clean pajamas!

So 11:30 pm saw me headed to the grocery store, naturally, in the rain. You have to understand how wound up I am at this point. Angry at Kendrie, angry at Blaine (don’t all Ugly-Parenting moments lead to Ugly-Marital moments as well?) angry at cancer in general. I get to Kroger, and every single buggy is outside, in the rain, soaking wet. I say to the lonely cashier, “don’t you have any dry carts?” and he replies, in a brilliant, thoughtful, the-customer-is-always-right sort of way, “No”. I completely lost it. Huffing and puffing and stomping about, making very loud comments like “isn’t THAT great customer service, that I have to go out in the rain to get my own damn cart!” and then I make a big show of bringing it inside and pushing it over to the restrooms, ripping half an entire roll of paper towels off the wall and drying off my cart, all the while making my displeasure known. Of course, a few minutes later I realize what an Asshole I’ve been and hide for a while in the produce section behind a display of oranges, hoping that particular cashier will be off-duty soon and someone else will check me out. But alas, I had to show my face again. So Midnight-Cashier-Man at the Kroger on Watson Blvd, if you are by some chance reading this, my most sincere Apology.

Ah, what a day I’ve had. But you know? I actually feel better getting it all off my chest .... so thanks!

Hope you all have a wonderful holiday weekend, and Happy Valentines Day! Love, Kristie
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KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Well, it’s a tossup. Five hours in the van, plus I had two strange women coming at my legs with needles which wasn’t much fun, and two insane parents force-feeding me medication until I threw up all evening. Take your pick, they all pretty much sucked. (can I say sucked?)

BEST THING ABOUT HAVING CANCER TODAY: Not much.

Looking at Delayed Intensification

Turning sixteen is a rite of passage in America, at least for those of us who are able to get our drivers licenses and start driving. I think my mom was just sick and tired of hauling me to all my extra-curricular activities, but she was so excited for me to get my license she let me skip first period and drove me there herself. And just as significant as the license, is the “FIRST CAR”. A lucky few are given cars as gifts, many “inherit” their parents’ cars, and some of us buy our own. I was in the third category and had definite ideas about the “ride” I wanted. Unfortunately I also had a budget of only $500 hard-earned babysitting dollars, so the car of which I dreamed, and the car which I got, were two totally different things. I dreamed of a classic Mustang, or maybe a little red sports car; stylish, smooth riding, and the envy of many.

What I got was a 1973 green Maverick with tan shag carpeting and more than its share of dents and dings. No air conditioning, no heat, and no power anything. Pleather seats, that were freezing cold in the winter (no heat) and that would melt the flesh off the backs of your thighs in the summer (no a/c). One winter morning I drove my sister to the orthodontist and fresh out of the shower, her hair froze. This is the same sister who would ask for a ride to school then demand that I park a block away so no one would see her. She nicknamed the car “Speedy” and it stuck. The first time I drove to my boyfriend’s house to take him somewhere, he insisted on wearing his football helmet while he rode in the passenger seat. Whether that was a commentary on my newly acquired driving skills or the car, I don’t know, but it was pretty funny (after I pretended to be annoyed, of course.)

Obviously, when it came to Speedy, there was a lot to be desired in the luxury and amenity department. But you know what? That little car got me where I needed to go. Maybe it wasn’t the smoothest ride in town, or the most beautiful, but with only an occasional battery jump needed, I always made it to my destination. Now, hold on just a minute through the following medical information, and I’m going to segue into an analogy so brilliant, it will be the water-cooler talk of the nation this Monday. (ok, maybe not *that* brilliant, but it’s something new to discuss besides the tiresome Janet Jackson breast-baring episode.)

Kendrie begins her Delayed Intensification phase on Monday, emphasis on “intense”. Its eight weeks of treatment with repeats of some of the earlier drugs, and also some new drugs. Most excitedly, steroids again! Yippee! (I hope the Kraft Mac & Cheese workers are ready to put in their overtime, getting all those little blue boxes delivered to our house.) She’ll begin on Monday, with another spinal tap, plus a bunch of new IV medicines, and the Dex (can’t forget the DEX!) then we go back up to Atlanta on Wednesday for her to receive two chemo S-H-O-T-S (shhhhhh! I don’t even want her to hear me type it out on the keyboard!) There will be oral drugs, IV drugs, drugs in her spinal fluid; heck, *I* even get to give her shots this time around, does the fun never end???

DI is a pretty harsh phase and it’s fairly common for kids to have increased side effects from all these meds. Any hair that has started growing back usually falls out again, kids can feel crappy and achy from the steroids, can have reactions to the shots, fevers, and often suffer low blood counts – which puts them at greater risk for infections and the need for blood and/or platelet transfusions. Of course we’re hoping Kendrie does as well this phase as she has so far, but also trying to prepare ourselves for the possibility of a rough couple of weeks ahead.

(Here comes my brilliant analogy)

You know what’s important, though? The destination, not the ride. Our final goal is a town called “Curesville” and if it takes riding in a beat up 1973 Maverick called “Delayed Intensification” to get us there, so be it. Sure, I’d prefer our ride through childhood be smooth and easy, but for now, it’s not. So, we’ll put up with a few dents and dings along the way, strap on our football helmets, try to avoid the potholes as best we can, and manage our way through the next eight weeks. As long as we arrive, that’s all we care about.

(So that’s the analogy. I’ll concede it wasn’t "brilliant", and settle for “clever”. OK, let’s be honest, if you’re even still reading at this point, then I’m thrilled!)

Thanks so much to Lisa J. of Lorton, VA, the latest person to make her way through the CB List of 100! Those messages cheer up a lot of people! And thanks also to Julie H, of Annandale, VA, my good friend and fellow Survivor addict, for going this week and donating blood. It makes such a huge difference!

Thoughts and prayers going out to the families of Conor Ford and Alex Haigler. These brave boys’ fights touched my heart and this past week it broke a little for each of their families.

Thanks for checking in on Kendrie’s website and thanks especially for signing the guestbook. She gets a real kick out of sitting in my lap and having me read the messages to her, so thanks for taking the time, as often as you’d like!
Best wishes, Kristie

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KENDRIE’S PERSPECTIVE:

TOP FIVE WORST THINGS ABOUT INTERIM MAINTENANCE:

1. Doses of oral medication to date: 243
2. Spinal taps to date: 8
3. IV Chemo to date: 10
4. Shots to date: 2
5. Bone marrow aspirations to date: 5

TOP FIVE BEST THINGS ABOUT INTERIM MAINTENANCE:

1. Blood counts stayed high!
2. Finally lost all the weight I gained from the steroids at the beginning!
3. No fevers or infections or ER visits the entire phase!
4. I felt good enough to run around like a hooligan the entire time!
5. I AM STILL IN REMISSION!

First Interim Maintenance Phase; week #8 of 8

OK, I am making absolutely no promises that any part of this journal entry will make sense because I’m typing it at 2 am (all you die-hard CB surfers will empathize) after watching the Super Bowl and All Star Survivor premiere. Needless to say, I'm pretty hopped up on Diet Dr. Pepper and cocktail meatballs. I’m going on record now as stating I want either Rupert or Rudy to win Survivor. (although the previews from next week have me a little concerned about Rudy’s physical health!) A funny aside: before the Super Bowl, Beyonce sang the national anthem. I’m not real familiar with her music (I’m too old to be "in the know" regarding current music; give me a good 80’s station any day!) but I do know she’s a Grammy winner/nominee and a very famous, popular singer. After she finished the anthem, Brayden, my soon-to-be seven year old, turned to me and said, “Wow, mom, she should be on American Idol!” Do you think that’s a sign I watch too much reality tv???

Anyway, I have the results from my 100-CB site challenge, and am happy to know that so many of you finished signing all the guestbooks! I know many more people were making the rounds … whether you signed all 100, or even just one, thank you so much for making a difference! Following is the list of people who let me know they completed all 100! (if you completed it, be sure to tell me so I can give you props!)

Jennifer C. from Eugene, OR

Wendy W. from Winder, GA

Caleb's mom Debbie L. from Dickson, TN

Fisher's mom Carolyn C. from Chesapeake, VA

Heather M from Mississauga, ON, Canada

Tracy M. from Windsor, ON, Canada

I also received quiz answers from Tiffany B. of Grand Prairie, TX and Jennifer C. from Eugene, OR, but TEAM CANADA answered the most quiz answers correctly! Congratulations to TEAM CANADA members; Tracey H. from Calgary; Heather M. from Mississauga, and Terry J. aka Big Daddy to Julianna Banana from Manitoba. (just reading all those Canadian town names gives me the urge to strap on some ice skates and pick up a hockey stick! Unfortunately, the last time we went ice skating, my husband-to-be broke my bridesmaid’s ankle, so maybe I’ll stick to something more up my athletic alley --- like needlepoint.)

So, Fisher, Caleb and Julianna, be on the lookout from Caring Bridge for a notice regarding the donations I will be making in your honor. I received a great amount of positive feedback from so many about the challenge, and I hope all of you who took the time to participate, even if you couldn’t get through them all, enjoyed meeting so many wonderful kids. (and a few grown ups, too!)

If you finished the challenge and have any nerve endings still left in your fingers, here is a great link with dozens (hundreds!) of sites you can visit: Share The Love Just go to the site and click on any of the links; kids, angels, needs tlc, etc. You really have the power to brighten up someone's day in just a minute or two!

OK, quick correction: It was our friend LISA who rolled up her sleeve and donated blood, then sent Kendrie the t-shirt in the picture directly above. I gave credit to Gary (Lisa’s husband) but he is too busy packing travel-sized toiletries in his rollaway luggage for the all-expense paid vacation Uncle Sam is sending him on, to an undisclosed location (that rhymes with Hi-Rack) to be able to donate himself for a while. So thank you, LISA! And Gary, our friend, be safe.

Also, see in that same picture the cool tattoos on Kendrie’s hands? They were sent in a care package by a group called SuperSibs! that honors and supports the brothers and sisters of children diagnosed with cancer. In our house, of course, that would be Brayden and Kellen. They have been pretty good sports about all the extra attention Kendrie has gotten and they realize that the majority of cards that came in the mail when she was first diagnosed were naturally for her. But I wanted them to have something special, too, so I signed them up with SuperSibs! So the other day their introductory packets arrive, with letters, ribbons, tattoos, certificates, etc. and can you guess what happened? I made such a big deal out of how special this was, just for them, because they are important, too, blah blah blah. Then, I took Brayden to get her haircut and while we were gone, Blaine (aka Man of the House Who Should Really Check With Woman of the House More Often) gave the tattoos to Kendrie to put on! Brayden gets back from her haircut and is like, “why does Kendrie have my tattoo on? I thought that was something special just for ME, and NOT for her??? It’s not fair!!! Why does she get everything???” and Blaine is looking at me like, “what? What did I do?” (sigh)

Thanks for checking the site, and especially thanks for signing the guestbook. I hope you all have a great week!
Take care, Kristie

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KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: We went to the circus today, and my mom kept pulling out the Purell, every five seconds I’m telling you, and then wouldn’t let me finish my cotton candy after I dropped it on the floor. I guess the 10-second rule doesn’t apply if you have leukemia!

BEST PART ABOUT HAVING CANCER TODAY: It was cold in the big coliseum place where they had the circus, but I already had on my Kim Possible stocking hat that my over-protective mom made me wear. (Don’t tell her, but I was glad I had it on ‘cause otherwise my little bald head would have been cold!)