Tuesday, December 30, 2003

Kindness Strikes Again

Howdy, and Merry Belated Christmas to all of you! I hope everyone had a fabulous holiday, filled with good tidings, good cheer, love, happiness, joy, peace............ all those things I was unsuccessfully searching for on Christmas Eve, ha! Our Christmas morning was lots of fun; the kids slept in reasonably late (7am) then we had the hour of gift-opening frenzy, the hour of peace while all toys were opened and closely examined (the hour we parents enjoy best) the hour of losing all the parts to all the games, rendering them useless the first day, and then the hour of fighting over whose toys are whose and refusing to share.

My personal philosophy is that on Christmas Day, kids shouldn't have to share their new toys if they don't want. So I try to give them 24 hours of "ownership" before Kendrie's motto of "finders, sweepers, losers, leapers" takes over and the free for all kicks in.

The biggest hit this year appears to be the standing microphone (with actual working amplifier!) that came with Kellen's new guitar. Kendrie derived great pleasure from yelling into it, at least 3,000 times that day, "Hey! Who ordered the poo-poo platter?" and then collapsing on the floor in a heap of giggles. Running a close second for airplay was the Escoe children's trio-choir, performing (about 2,900 times) the popular holiday classic, "Diarrhea", which their father so tactfully taught them. In case you are sadly unfamiliar with this holiday favorite, here are the lyrics, so you can teach your own children:

"If you're sliding into first, and your shorts are about to burst, diarrhea, diarrhea.
If you're sliding into home, and your shorts are full of foam, diarrhea, diarrhea.
If you're sliding into third, and you lay a juicy turd, diarrhea, diarrhea."

There are even sound effects, in addition to the timeless lyrics, but we won't go into that.

So you can imagine about how my afternoon went, listening to that over and over and over. I had to put my foot down when I discovered them dragging the microphone outside to "give the neighbors a concert." If ever a family were to be evicted by the homeowners association, I'm sure the Diarrhea Classic would be a good enough reason.

I want to say thanks to all the people who signed Kendrie's guestbook after reading about my pathetic Christmas Eve and shared their own humorous sagas with me. I guess it's good to know that those Hallmark moments are just as elusive for others, and it probably makes us more normal! I love when people, despite being faced with a life situation like this, can still laugh at themselves. Check out the websites of some of our new friends, and wish them Happy Holidays as well:

Katie's Page Be sure to read her mom's journal entry dated Dec 15th --- another great edition of the Crap Sandwich Chronicles!

Elijah's Page Wonderful family!

Emma's Page Another wonderful family!

Kody's Story An amazing site, and an amazing kid! (love the tattoo, Kody!)

I mentioned in a previous journal entry about the two special gifts we received this Christmas, the notices from Caring Bridge and the American Red Cross that donations to these two wonderful organizations had been made in Kendrie's name. Another reminder--- that sometimes the most wonderful gift is a gift of yourself--- came today in the mail ---- a notice from Locks of Love that a donation had been made in Kendrie's honor by our friend Katherine B. in San Pedro, California (LA Air Base.)

Locks of Love is a charitable organization that takes donated human hair and provides hair prosthetics for children with long term medical hair loss, free of charge or on a sliding scale. It takes four months, and a dozen donations, to make a single wig. The organization only accepts donations that are 10 inches or more in length, so this was no little thing that Katherine did! If you would like more information about Locks of Love, their web site is www.locksoflove.org. And thank you Katherine, for such a selfless, generous donation!!! See? Kindness strikes again!!!
much love, Kristie

WORST THING ABOUT HAVING CANCER TODAY: I can't even step outside the house for one second without my mom yelling at me to put a stocking hat on my bald head!

BEST THING ABOUT HAVING CANCER TODAY: My cool new Kim-Possible stocking hat! BooYa-!

Wednesday, December 24, 2003

"LEUKEMIA IS THE GRINCH THAT STOLE MY CHRISTMAS SPIRIT (or at the very least, spit in my eggnog.)"


We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.

First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.

We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.

This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???

Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")

Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:

Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"

And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?

I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???

If anyone finds it before morning, please tuck it into my stocking.

Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.

Saturday, December 20, 2003

Christmas Letter 2003

Ho, Ho, Ho, and a MERRY Christmas! The only thing that makes me happier than opening ridiculously expensive Christmas presents (which let's be honest, my husband is in the military so *that* rarely happens, ha!) is opening the cards, letters and pictures that everyone sends during the holidays. As you all know, I am a HUGE fan of the bulk Christmas newsletter and love reading them, and sending them, each year. For those of you we have met online, I thought I would post our family Christmas letter here as a journal entry ..... my version of a virtual holiday letter to all of you!

Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!


December 2003

Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:


I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.

Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:

The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.

Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)

The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.

Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.

I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.

Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.

Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.

Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.

At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.

I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.

Friday, December 19, 2003

Oh, yeah, sometimes I forget that Blaine has cancer, too

Brief update: I feel embarrassed for not posting this earlier, since so many of you were kind enough to worry and wonder, but we did get the news that Blaine's biopsy results were clear (nothing more than scar tissue) as the doctors suspected. Thank goodness, because like someone said, watching my head actually explode wouldn't have been a pretty sight. :) Thanks so much to everyone for caring!

Monday, December 15, 2003

Interim Maintenance Begins


Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!

For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!

Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.

Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!

Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)

You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!

For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie

1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.


1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???

Wednesday, December 10, 2003

Pointless thoughts ..... no surprise its the only kind I seem to have lately

Pointless thoughts, reflections, aimless mental ramblings………………

When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.

Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.

Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.

** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”

I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”

** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?

** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????

Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.

“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis

I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.

“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.

“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.

And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:

“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”

I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!

Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.

Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie

WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.

BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!

Monday, December 08, 2003

Consolidation - Day 21

Well, technically, it’s only Day 20, but I’m discovering that in the world of chemotherapy (or at least in our world of chemotherapy) “close” is good enough. The first time or two our clinic visit was bumped a day in either direction I panicked, but now realize going in a day early or late doesn’t seem to matter, and is sometimes unavoidable. It IS, however, very difficult on our wonderful military and scrapbooking friends who keep making plans to bring us dinner on our clinic days, when the days keep changing! (it’s fine with me, though, I’ll take a home cooked meal, especially home cooked by someone else, anytime!)

Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.

We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)

“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)

The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.

At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!

Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.

Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie

WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!

BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!

Wednesday, December 03, 2003

Consolidation - Day 15

THANKS, THE SWEATER EPISODE, AND A DEFINING MOMENT (no, not one of those “Hallmark” ones, either)

Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!

Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:

`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````

So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.

We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.

She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.

Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.

We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”

Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?

I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.

On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.

Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!


WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!

BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!

Friday, November 28, 2003

The Original "Crap Sandwich" Journal Entry


First of all, I have to say how much we appreciate those of you who check on this web site and take the time to sign the guestbook. Several of you, and some who have e-mailed me privately, have made the comment you are glad to see me (try to!) put a humorous spin on things, and that you’re glad to know we’re coping so well. To be honest, I have no idea if we’re coping well at all. I just make it a point to do my crying and worrying and stressing in private, and put on a happy face, USUALLY, in public. But today, in this journal entry, I’m going to be a little more honest about things and the way I am really feeling. I’m not sure what has brought about this pathetic moment of self-introspection, but feel the need to get some things off my chest. If you don’t want to hear it, exit now, it won’t hurt my feelings. I promise to kick myself in the butt and be back to normal tomorrow. (No, I will not be taking volunteers for the chance to kick me, so all of you just put your hands down now. No, no, do NOT form a line!)

I think it’s the whole Thanksgiving holiday. Thanksgiving. Giving thanks. Something I’ve found pretty easy to do most years, and took for granted pretty much every year up until now. Sure, I know a little bit about worrying about the health of family members. Who doesn’t? My dad has muscular dystrophy. My mother-in-law is on dialysis for renal failure. My husband had two major surgeries to get rid of a cancerous tumor six months ago, and had a nice chunk of the inside of his head removed at the same time --- reconstruction still a work in progress. So I thought I was a veteran at worrying, but always managed to give thanks irregardless. WRONG. Nothing prepares you for the fear and worry when your child is ill. More than ill. Ill with a disease that, even in this day and age, still claims innocent victims. And now you want me to give thanks????? So here’s the lame analogy I came up with:

Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes, “thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:

You: “excuse me, I didn’t order this crap sandwich”

Waitress: “house special. You got it without asking”

You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.”

Waitress: “well, you got a crap sandwich.”

You (getting upset) “well take it back and give me what I asked for instead!”

Waitress points to a sign that says “Absolutely NO substitutions”

You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to”

And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!”

And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”

That’s a little how I feel right now at Thanksgiving, living in this surreal world of leukemia. I know there are other people who are having a rougher time of things than we are. I know Kendrie is responding well to her chemotherapy. She is in remission and God willing, will stay there. But I am having a very difficult time Giving Thanks for this crap sandwich, and I’m unbelievably resentful that there are more crap sandwiches being made in the kitchen even as I type this, and terrified more than you can possibly know that our family might be due another platter.

I resent that “in remission” doesn’t mean cured. It doesn’t mean anywhere near cured. It means cured for right now. Today. Kendrie could relapse tomorrow; next week; next month; ten years from now. When are we ever supposed to relax? When will this knot in my stomach go away? It’s the last worry on my mind at night and the first thought in my head when I awake each morning.

I resent that for the rest of her (my) life, every time she complains of an ache or a pain or runs a fever, I will fear that the cancer has returned. Prognosis is no where near as good for kids who have relapsed. Dear God, don’t let her relapse.

I resent that I can no longer brush her forehead or cheek without covertly checking for signs of a fever.

I resent that despite my best intentions, my other two kids are getting the short end. There are only so many hours in a day.

I resent that I am so tired, and then feel frustrated with Kendrie for being the source of that, then feel ashamed of my frustration.

I resent that I saw Kellen had bruises on his shins tonight and for a split second, all I could think was “Dear God, not two of them.” It does happen; two kids in one family. What family could endure that? The ones that have to, I guess.

And that’s my point --- to all of you who say, “I don’t know how you do it” or “I don’t think I could do it” Well, of course you could. Do we have any choice? We do it because to do otherwise would be to shortchange Kendrie, and all the kids with cancer, which simply isn’t an option. And I try to do it with a little bit of grace and humor and optimism because quite frankly, if I wrote too many journal entries like this, I would depress the shit out of everyone, myself included. In fact, I don’t know what I hope to accomplish with this one, except maybe trying to explain that underneath the jokes and “looking on the bright side” is a terror so real that sometimes I lie in bed at night and can’t breathe. And I’m not trying to be overly dramatic. I’m trying to be honest. Leukemia kills children. Yes, the “cure” rate is 85% (For ALL, which is what Kendrie has. Other kinds have lower rates than that.) That means 15% still die up front, and the other 85% ONLY have to worry about a relapse for the rest of their life. I’m feeling a little sick to my stomach just typing all this, so maybe I should move on.

There are some things I am truly grateful for:

I am grateful that it looks like a CVS pharmacy exploded in my kitchen. That means there are drugs that can be used in an attempt to cure my child and beat leukemia.

I am grateful Kendrie has tolerated the treatment so well so far. I am grateful for remission.

I am grateful my husband has a good job with good insurance and that so far, finances are not one more worry to add into the rest of this.

I am grateful for the friends and family, both near and far, who have supported us so kindly, and who will read through this awful journal entry and love me anyway.

I am grateful that when Kendrie was diagnosed, my mother was able to drop everything to come to Georgia and be with us. I am grateful that my dad and my sister so willingly held down the fort in her absence.

I am grateful my husband had cancer this spring. Had he not, he wouldn’t have been placed on the “Do Not Deploy” list and he would have been in Sarejavo when Kendrie was diagnosed. As hard as that week was, I am grateful we were able to face it as a family.

I can’t come up with a reason to be grateful that Kendrie is going bald, but I’ll work on it.

I am grateful that my crap sandwich isn’t any bigger than it is.

Tuesday, November 25, 2003

Consolidation - Day 7

And so ends our 24-Hour Empathy Campaign, launched in an attempt to make Brayden and Kellen a little more sympathetic to Kendrie’s plight. For the most part they have been good sports about all the extra attention Kendrie is getting. There have been some grumblings about the disparity of gifts that came for her at the beginning, and even a few “you like Kendrie more than you like us” comments, especially when Kendrie and I go away the night before one of her clinic visits and stay in the hotel. Kellen in particular seems to think the hotel is set on carnival grounds and we spend the whole visit riding ferris wheels and eating cotton candy. Little did he know that the only thing she gets to ride is the rolling luggage cart (because I’m too out of shape to carry her and all of the luggage to the room myself!) and that the room service is only fair-to-middlin’, no cotton candy in sight.

Kellen even made the comment yesterday, standing in line on base to receive his flu shot (which he obviously wasn’t too happy about) that he wished he had cancer so he didn’t have to get a flu shot. (Kendrie has to get hers from the oncology clinic.) I leaned right down in his face and said, “Kellen, Kendrie gets shots every single week, in her chest, back and sometimes her legs” and he paused and then said, “so…… I really don’t want cancer then, do I?” I have to cut him some slack, right? After all, he’s only five. Plus, beating children in public is really frowned upon these days.

We decided since they are out of school this entire week for Thanksgiving Break, we would all go up to Atlanta together and let Brayden and Kellen see what really takes place on a clinic day. Remove the mystery, if you will. They thought staying in the hotel last night was great --- made me realize we really should travel a bit more, if a Courtyard Marriott is their idea of “big fun”.

Then they went to the clinic with us this morning (we prohibited breakfast for them, just like it is for Kendrie on clinic days) and they got to meet the nurses, doctor, child life specialist, and see Kendrie go through the “basics” of a visit – vitals, exam, and getting her port accessed for chemo and the blood draw. When it was time for her spinal tap they went to the playroom with Miss Laura, who talked to them about leukemia and what exactly it means. I don’t know if all pediatric cancer centers in the country have Child Life Specialists, but I want to say that ours ROCKS!!

Anyway, Kendrie’s spinal tap went very well. She responded perfectly to the iv sedation meds which make her “sleepy” and also have an amnesiac effect. Thanks to the amnesia, we were also able to sneak in her flu shot in her leg – hey, sometimes what you don’t know won’t hurt you! The recovery time for iv sedation is less than half an hour, as opposed to the three hours she slept after her general anesthesia last week. This makes for a much, much quicker day, which makes all of us happier. Dr. L withdrew a vial (syringe? Sample?) of spinal fluid, which will be tested to make sure there are no leukemia cells present, and they also injected the methotrexate (preventative chemo) into the spinal fluid. Kendrie was a little out of it, but not as much as I thought, since when I told the nurse we were going to take the kids to see Brother Bear this afternoon, Kendrie’s eyes popped open and she said very emphatically, “No, Dad said Cat in the Hat!”

Her ANC number, which is used to gauge her susceptibility to infection, was very good. This means now is a perfect time to take her out and do some of the things we have been avoiding the past six weeks, like restaurants, movies, shopping, etc. The doctor explained that the next two or three weeks, during the rest of Consolidation, the number should stay high and she should feel pretty good. The steroids have pretty much worn off (yes, Kristie, there is a Santa Claus!) and the meds she is on at home (6MP and Bactrim) shouldn’t have any difficult side effects.

So we enjoyed our day today very much. We hadn’t been out to eat as a family since Kendrie was diagnosed, and sitting in the movie theater, munching on popcorn, was great. I spent a good portion of the movie watching my kids instead of the screen, and seeing their laughing faces (who knew Canadian moose were so funny? I’ll bet that Twelve Days of Christmas song by the Canadian guys about beer would send my kids into hysterical paroxysms.) It was a wonderful feeling to have a “normal” day and be able to pretend, even if just for a few hours, that everything was routine again. I even held back from spraying sanitizer at everyone who walked past our aisle at the theater. All in all, a very good day, and I think it was beneficial to our entire family to spend it together. (of course, not ten minutes after the movie ended the kids were arguing over who needed to go to the bathroom more and “why did she get m&ms if I didn’t and *I’m* going to walk with Dad, not you!” Maybe THAT is the real indicator that life today was back to normal!) Here’s hoping for many more “normal” days ahead.

WORST PART ABOUT HAVING CANCER TODAY: I’m not quite sure what happened in that doctor’s office, but my leg is really sore and I think somebody around here is trying to get away with something ….. but I’ll figure it out and then they’ll all PAY!

BEST PART ABOUT HAVING CANCER TODAY: The new Roofus doll my Dad bought me from the store tonight -- it burps and everything! I love it! Boo-Yah!

Thursday, November 20, 2003


Consolidation - day 2


That knocking sound you hear is me banging my head on my computer desk! Along the lines of "third times a charm" I say with absolute certainty that this is the THIRD AND FINAL TIME that I have jinxed myself by writing something in Kendrie's journal and then having it come true the next day.

First jinx -- saying we had Kendrie's oral meds under control. The next day, new, bigger meds, and we tried to get a mountain of powder in her and she completely balked. Hopefully that's a sign she'll never be an addict, right?

Second jinx -- "my child certainly doesn't have the behavioral problems associated with steroids" equals (=) Demon Personality From Hell. 'nuff said.

Jinx #3 (and FINAL jinx) appears in the journal entry I wrote on Tuesday night of this week about "we are so awesome, we've gone the entire 32 days of induction without a fever or illness or ER visit" and would you believe that not thirty minutes after I hit the "send" button, Kendrie woke up screaming and didn't stop for something like twelve hours?????

So yesterday saw us driving back up to Atlanta for a visit to the ER at Children's Hospital. It was justified, as she did indeed have an ear infection and another problem that shouldn't be discussed in great detail except to say it involves some gaseous substances and a need for a much greater vigilance on my part about her daily stool softener. No wonder the poor kid was miserable.

She made it extremely clear to me that she was not at all happy about another six hours in the car (did you know a full bottled water can actually dent the back of a person's head?) Ok, not that bad, but I do need the 800 number of whatever company has invented "soft butt" car seats, if anyone has it.

The good news is that we have been off steroids for three days now and I'm starting to see brief glimpses of the lovable, funny kid I remember. Yesterday, laying in the room at ER, she asked me in the sweetest, most serious little voice, "on the way home can we stop at the same restaurant and have some more of that delicious fish?" Just hearing the words "Delicious fish" come out of her mouth made me giggle. So of course we stopped, had our delicious fish, and even better, got two cups from Steak N Shake with no holes in them this time. (again, see previous journal entry if you don't know what I'm talking about.)

Now, I'm not going to say that my little ray of sunshine is burning as bright as ever, because sure as I do that I will invoke the jinx policy and she'll wake from her nap with a Charles Manson personality, but here's hoping better days are ahead!!
love to all, Kristie

WORST PART ABOUT HAVING CANCER TODAY: All the hair that is falling out of my head keeps getting caught between the new fat folds under my chin and itching me to death!!! Plus my chemo drugs from Tuesday are making me achy.

BEST PART ABOUT HAVING CANCER TODAY: Mom let me eat the chicken nuggets and french fries that somebody left in the fridge --- boy, are they going to be mad later when they realize they're gone!!

Tuesday, November 18, 2003

Consolidation begins

Day 0 of Consolidation ---long entry (aren't they all?)

Ok, first of all, after reading through the messages in Kendrie’s guestbook, I think I have a moral and legal obligation to clear something up, as it seems my character has been unfairly and unjustly besmirched. Apparently, many of you who I *thought* were my friends seem to be under the misguided impression I am some kind of selfish, evil, breadstick-snatching ogre. That simply is not true!!! For the record, when I so innocently helped myself to one of Kendrie’s Pizza Hut breadsticks last week, inciting the temper tantrum to end all temper trantrums, the child had a double-family-sized order sitting in her lap! Do you know how many breadsticks that is? TWENTY! 20! Two-Zero!! And I took ONE measly breadstick!!! So, although the 4-yr old in the car took it as a blatant display of greed on my part, you grown-ups out there should know me better than that! (and hey, if nothing else, my 3 am shifts in front of the microwave heating up mac & cheese should ensure all of you that the child is NOT going hungry, ha!)

So, for those of you following along and wondering why I didn’t update the journal after Kendrie’s appointment last Friday, it’s because the appointment was postponed until today due to scheduling problems around the Thanksgiving holiday next week. We are now on an “every Tuesday” schedule for this next phase (Consolidation) and it wasn’t any problem at all, except it made us the lucky recipients of four BONUS days of Dex. (The Steroid from Hell, for those of you fortunate enough to have no personal experience with it.) Otherwise, we made it through the rest of Induction without complication, and now move forward to Phase II; Consolidation.

As a brief overview (anyone not interested in the dry, medical part of this journal entry, skip down to the next paragraph.) Induction (the initial 28 days, or 32, in our case, of chemotherapy treatment) is about killing as many abnormal white cells in the shortest amount of time possible and achieving a state of remission (no signs or symptoms, although there are still leukemia cells present). Kendrie achieved remission by Day 14, so she is considered an “induction success” and we now move on to Consolidation. Consolidation therapy consists of new combinations of drugs to destroy the cancer cells that survived induction, especially any that might spread to the central nervous system (brain and spinal cord) since those are places the cancer likes to “hide”. Since the CNS cannot be reached by oral or IV drugs, Kendrie will have weekly spinal taps with spinal fluid testing and methotrexate injections into the spinal fluid as a preventative measure. So those, plus her continued daily doses of oral drugs at home, are what the next 28 days should hold for us.

Today’s clinic appointment went markedly better than previous ones. She still cried, but settled down much more quickly and even agreed to let Nurse Amy shine the light in her mouth. (sounds silly, but pursing those lips closed had been a HUGE control issue up until now!) She was also more receptive to the awesome Child Life Specialist, Miss Laura, and made a few art projects while we were waiting for our appointment time. I was thrilled to see her draw a picture of a sunshine happy face, and not some sick and twisted medical scenario, with Mommy strapped to a table and doctors and nurses jabbing needles and pins in her (my freshman psychology paranoia about Art Therapy coming alive!!)

Kendrie gained a total of five and a half pounds during Induction, which doesn’t sound like much until you do the math and realize that is over 15% of her total body weight. I don’t know if the thought of putting on 15% of your body weight is any big deal to the rest of you, but it would definitely bump me out of the “pleasantly plump” category and right up into “wow, even my fat clothes aren’t fitting anymore”! But best of all, her blood pressure was normal enough (well, after the Versed, anyway) that she could have her bone marrow aspiration done under general anesthesia. In between the rain, the Atlanta traffic, and the stupid cup with a hole in it from Steak and Shake that leaked chocolate malt all over my van, which meant I had to pull over on the shoulder of the road and clean it up in the rain, thank goodness we didn't get hit by an 18-wheeler or anything, but I digress -- we didn’t get home until 9pm, so it made for a long day, but otherwise went well.

I want to thank all of you who have been checking the website and signing the guestbook, please sign as many times as you would like; we love hearing from you! It’s great, also, to be re-connecting to friends we haven’t talked to in years. Kind of a crappy reason, but great nonetheless. I also want to say a specific thank you (sounds like I’m giving my Academy acceptance speech, doesn’t it?) to the two local groups here in Warner Robins--- the PK Contracting Wives, and the HOGS (Heart of Georgia Scrappers) who have been so wonderful to our entire family by bringing us meals, and diversions for all three kids. And especially to Nadine Moon, who is the first person to tell me she is donating blood in “honor of” Kendrie. That is a list I would like to see become very long (hint, hint!)

So, that’s it for today. Hope you are all having a great week as well!
Love, Kristie

1. Taking Decadron and the way it made me feel. Taking Decadron for four extra days. Taking Decadron. Period.
2. Number of bone marrow aspirations to date: 5
3. Number of spinal taps (aka lumbar punctures) to date: 4
4. Number of doses of oral medicine at home, to date: 74
5. Number of needle sticks: a lot
6. Having so many people poke me in the arms and hands with needles before I had my surgery to have my port-cath put in my chest.
7. Having so many people poke me in the chest with needles after I had my surgery to have my port-cath put in my chest.
8. Losing my hair. My Sunday School teacher Ms. Ginger says God knows every single hair on everyone’s head. I hope in my case, he has been practicing his subtraction skills. My mom says it’s a case of “the sins of the parents” (whatever does that mean??? I’m only four, after all, am I supposed to know what she’s talking about?) because Mommy has been very, VERY vocal in the past about how much she hates that whiny brat Calliou and now I’m probably going to wind up looking like him.
9. Spending so much time in the car driving back and forth to Atlanta.
10. Band-aids. Any shape, any size, any kind. Need I say more?
11. Dad says my college fund is depleted by $94.68, the amount of money we spent on cheese pizza and breadsticks from Pizza Hut the past two weeks.
12. Oh, wait, this was a top TEN list, right?


1. It’s over!!!
2. Achieving remission by day 14!!
3. Achieving remission, period!!!
4. Grandma McClung coming to visit us for an entire month!
5. Knowing that our family has single-handedly kept the employees of Pizza Hut, Kroger, Kraft Cheese, and Purell in business the past month (and think of the thousands more if you believe in trickle down economics!)
6. All of the thoughtful things people have done to show us how much they care.
7. Getting so many wonderful cards and phone calls from people everywhere.
8. Getting to eat whatever I wanted, whenever I wanted (mainly mac & cheese at 3am)
9. Making it through the entire 32 days with no fevers, no ER visits, and no more inpatient hospital admissions (after the one week stay at the time of diagnosis.) I don’t want to go back there anytime soon, no matter how nice those nurses are!
10. Did I mention that it’s OVER????!!!

Wednesday, November 12, 2003

"They suck, thanks for asking"

“Well, to be honest, they Suck. But thanks for asking!” That’s the reply I felt like giving to anyone who asked me yesterday how things were going. It was not one of our better days, by any means, mainly because I appear to have the emotional stability of the Leaning Tower of Pisa. Once again I jinxed us (will I never learn?) by mentioning Kendrie is not having the steroid-induced mood swings like other kids seem to get. What, was she reading over my shoulder and thought, “Aha! I’ll show her!” ???

Anyway, Monday night she had her first temper tantrum, fit, episode of ‘roid rage, whatever you want to call it. I was so taken aback I didn’t know whether to laugh or cry myself. I have never seen a small child so upset, inconsolable ….. freakin’ angry and out of control! Well, sure, strangers' kids in Wal-mart, maybe, but not MY child! She kept complaining, very VERY loudly, that her stomach and pee-pee (the highly technical term we use at our house) hurt, so Tuesday morning, at her oncologist’s suggestion, we decided to have a urinalysis done to make sure she didn’t have any kind of infection. Well, leave it to my military-insured children to get sick on a federal holiday when the base clinic is closed. We called Tricare for a referral and sat on hold for SIXTY MINUTES before giving up and taking her to the local Med Stop. Luckily everything was fine and we could relax that it was only the temper tantrum from Hell and would hopefully be over soon. It wasn’t.

When we left the clinic I drove to Pizza Hut (imagine that) and then I had the nerve, the audacity, the unmitigated GALL to eat one of Kendrie’s breadsticks in the car. OH. MY. GOSH. She started screaming and thrashing about in her car set. It was truly a sight to see. All afternoon and evening she fussed and whined and cried. I understand that the medications she is on cause aches and pains and swelling and puffiness, and some slight mood swings (ya think??) but it is so difficult to witness. Plus, she will not allow you to console or comfort her in any way. No one can touch her, rock her, rub her back or tummy, talk to her, look at her, breath the same air she is breathing, or communicate with her in any fashion. It’s very frustrating as a parent to see your child suffering and be helpless to do anything. So last night Blaine and I vacillated between just sitting and watching her be upset, or walking off and leaving her alone in her bedroom wailing. Neither option made me feel great about my parenting skills.

On top of that, Kellen’s kindergarten teacher pulled me aside after school yesterday to tell me he appears to be having a lot of “sad” days lately and they even caught him crying in class yesterday. Luckily she was very supportive, but that was another chink in the armor of my parenting ability. And let’s just say Brayden has been getting way fewer happy face stickers on her behavior chart since this whole thing started as well. So, great. I have one kid with cancer and two who obviously need years of therapy or will wind up on bell towers.

Last evening, I realized hiding in the bathroom crying wasn’t helping anyone, so I went online to my support group and begged people to either tell me their children had gone through the same thing, or at least lie and make me feel better. Can I just say how much I adore this new group of online friends??? Thank you SO MUCH to Doug, Carrie, Karin, Jane, Kim, Lola, Tammy, Jan, Karen, Kathi, Regina, Arlene, Sue, Carolyn, Terry, Belinda, and Machelle (and others I probably missed) for reassuring me that this is all normal, and will pass. I hate that their children --any children -- have gone through the same things, but am so appreciative that they are willing to help a "newbie" like myself to understand the long road facing us, and give us a little guidance and perspective along the way. I especially loved the comment one of them made, which pretty much summed up the way I was feeling:

“Having a child with cancer in this day and age is like living a nightmare and a miracle at the same time – it is just surreal sometimes.”

Words cannot express my gratitude at these fellow “cancer parents” who made me feel better, and even made me laugh (one mom compared her daughter to a pregnant chipmunk, ha!) And then I got online this morning and checked Kendrie’s guestbook and felt better all over again, to know we have so many fabulous friends and family members all over the country, and even new friends in Canada, who are keeping us in their thoughts as well. My morale was flagging, and you all gave it a much-needed boost.

So! Now we look forward to our clinic visit on Friday, and the fact that Kendrie will be finished with the first month of chemotherapy treatment. Bye-Bye Induction (and steroids for a while!), Hello Consolidation! (only 25 months to go)

Plus, how can I be depressed in the face of such wonderful news: Our dear friends the Warcholiks gave birth on Monday (well, let’s be honest, Kim did all the work but Kenny made the exciting phone call to let us know!) to a healthy, happy, beautiful set of twin boys: Austin David, 6 lb 3 oz and Dillon Micah, 6 lb 13 oz. Proof positive that even during crappy times, wonderful things are still happening in the world. Our congratulations to the entire Warcholik family: proud parents Kim and Kenny, and big brothers Jacob and Nathan!

WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so greedy she will eat one of my precious golden breadsticks without my permission.

BEST THING ABOUT HAVING CANCER TODAY: Having a mom who swears she will never, not on her life, eat one of my breadsticks without asking again.

Monday, November 10, 2003

Glad to see Induction go

Well, we only have a few days left of our initial "induction" phase, and much like a bad houseguest, I will be more than happy to see it go. Watching the side effects of these medications has been difficult. Typically, most kids on steroids (one of the drugs) can become irritable and agitated (to put it nicely!) but Kendrie has done just the opposite -- become withdrawn, quiet, spends a lot of time alone, and cries often. The only time she really gets upset is at the clinic for procedures, or sometimes at home when taking her oral meds -- otherwise, not much response to anything. She doesn't even get off the sofa, or out of bed, to greet Blaine and the kids when they come home each day. It has been 32 days since I heard Kendrie laugh, which is depressing, but we can occasionally get a smile out of her, usually when Brayden or Kellen do something to cheer her up. It has certainly been difficult to see our normally happy, playful child turn into a moody, non-communicative grump-butt, 24-7. I thought that wasn't supposed to happen until the teen years??!

The physical effects of the drugs are becoming more apparent, as well. The steroid has caused weight gain and swelling, mainly in the stomach (resembling Kristie) and in the cheeks (resembling Marlon Brando in the Godfather). Picture a blue-eyed, blonde, fair-skinned sumo wrestler, and there you have her. Ok, maybe it's not that bad, but those cheeks are getting pretty puffy.

She has been having leg pain and achiness, causing her to limp around the house and have trouble getting up and down from the floor. If she needs to get up, she crawls over to a chair or sofa, and pulls herself up ve-ee-eee-ery slo-oo-ooo-oo-o-owwwwwly. She also complains of stomach pains, which is normal, but still frustrating in that there isn't much we can do to help "make it go away."

Her appetite is just hysterically huge! Dr. Atkins must be rolling over in his grave (no disrespect intended) at the amount of carbohydrates this child is consuming! This morning for breakfast, she had two bowls of chicken noodle soup, four pieces of toast, a slice of pizza, and two breadsticks. And not just any breadstick will do, oh no! They MUST be Pizza Hut breadsticks. The kind you can buy at the grocery store and keep in the freezer are not good enough (and we know because we've tried every kind there is the past three days). Needless to say, the employees at our local Pizza Hut know me by name at this point. Oh well, at least she is over (for now) her cheese, cheese, anything cheese phase. Dairy cows all over Wisconsin are sighing with relief.

But I shouldn't complain about the side effects of the medications, since it is these very medications that are hurting her now, but will hopefully (God willing) provide her with a complete recovery.

I want to thank all of you for checking in with us, signing our guestbook, and showing your support through your cards, e-mails, phone calls, etc. It's a huge boost for us to know so many people are praying and rooting for Kendrie, and our entire family. We are doing a pretty good job, I think, of focusing on the positive and staying hopeful. That doesn't mean it's not scary, though. Another mom, on another Caring Bridge web site (aren't these the best for keeping in touch?!?!) put into words exactly how I am feeling, and I thought I would share it all with you, just to help keep it in perspective:

"The reality is that statistics don’t mean anything. Emily will not be cured 80 percent. She will either be cured or she won’t. And, frankly, any number less than 100 percent survival rate is NOT good enough. "

So with that in mind, even though we work hard to keep our chin up (or in Kendrie's case, all of her chins for now!) it's still good to know we have the support and love of all of you! Thanks so much!

WORST THING ABOUT HAVING CANCER TODAY: I only have five more breadsticks in the fridge. What will happen to me when they are all gone?!?!?!?!?!?!

BEST THING ABOUT HAVING CANCER TODAY: Mommy spends much, MUCH more time playing cards and working puzzles with me now than she used to. (I think she feels a little guilty about that.)

Thursday, November 06, 2003

An introduction to steroids

Well, we are back from Kendrie's clinic visit today and things went pretty well, all things considered. Her blood counts were good; in fact, her doctor said just looking at the labs from today and nothing else, you would never know she has cancer. You would, however, know it by the side effects of the steroids! Apparently there is a conspiracy between the drug makers and the dairy farmers of America, because for the past week, Kendrie is obsessed with cheese! Grilled cheese sandwiches, cheese slices, macaroni & cheese (by the TRUCKLOAD!) cheese crackers plain, cheese crackers with peanut butter, aaaagh!

I thought with all this eating, she would have put on some weight (average weight gain for a kid her size/age during the first month is between five and ten pounds, per her oncologist). As of today, she's gained only one pound (the entire pound is in her cheeks; they are getting a little roly-poly.) I was concerned that meant next month, when the appetite typically drops off, she wouldn't have as much of a buffer. I offered to sacrifice myself and undergo liposuction to donate extra pounds to her, but I think her oncologist saw through my flimsy scheme, as he was quick to assure me it was ok if she didn't gain any more weight.

We drove up to the clinic and back today, and naturally, hit the 5pm Atlanta rush hour traffic (which lasts approximately 24 hours a day in that city, who are we kidding?) so by the end of the drive, Kendrie had had about enough. We could not get home (and make her a grilled cheese sandwich) fast enough. In fact, for the last hour, I had to climb into the booster seat beside her and buckle my big fat butt in there, just to keep her company. After taking her pm meds, she wound up crying herself to sleep. But, her doctor told me (and I have gotten lots of reassurance from the fantastic "been there, done that" parents from my online support group) that this is all normal and temporary. Only one more week of induction therapy with steroids, then we move on. (at least until it's time to take them again!) Whew!

She was miniscually calmer with the port access today. Baby steps, baby steps, right? We did let her watch an older boy have it done (thank you to 13-yr old Matthew, for agreeing) hoping she would feel better after watching someone else remain calm during the "stick". I think it might have helped a little. She still screamed and had to be held in place, but at least she was no longer thrashing about. We just have to hope that each week it gets better.

And that's what is planned next --- daily oral meds until our next clinic visit, which will be Friday the 14th. She will be on her last day of induction and will have a BMA and LP done. I am hoping she stays calm enough to have it done under general anesthesia. Today's blood pressure was high again, so her doctor said we will have to wait and see.

Hope you all have a great three-day weekend! Thanks for passing our site along to friends and family; we love checking the guestbook and seeing who has signed in. :)

WORST THING ABOUT HAVING CANCER TODAY: Spending four and a half hours in the car driving to my appointment, my port access, listening to Mom ask the doctor so many boring questions, and did I mention spending four and a half hours in the car???

BEST THING ABOUT HAVING CANCER TODAY: I can make any demand for food, at any time, and my parents and Grandma Betty jump up and do it! They are suckers!

Wednesday, November 05, 2003

More details from the beginning

Wow! Thanks so much to all of you who took the time (and I realize it took a LOT of time!) to read the first entry in Kendrie's journal and respond so positively, and especially to those of you who signed her guestbook. I had no idea the responses would be so comforting to me, but they certainly are. The only negative comment I received was from Blaine! His words were (and I quote) "geez, it's nine thousand pages long and I'm at work, honey, it will have to wait until later!" What a dork.

Several of you have asked, and the answer is yes, it is fine with me if you pass her website address on to people you know, and also those who are praying for us. The more prayers the better! Please encourage even those people who don't know us to sign the guestbook, and if you've already signed, please sign again when you get a chance.

We are preparing to go to Atlanta tomorrow for Kendrie's Day 21 outpatient treatment at the clinic. It consists of accessing her port to draw blood (to check her counts) and to administer the chemo drug vincristine. Blaine is taking the afternoon off to go with us, which is great. This will be his first (and probably last for a while) chance to attend a visit, since my mom is still here and can pick Brayden and Kellen up from school. He and I also plan to visit with the doctor about the CCG/COG (Children's Cancer/Oncology Group) Protocol 1991 clinical trial study they are offering Kendrie the opportunity to take part in. We need to decide whether to give permission for the four-arm study, which is randomized, or keep her on the standard therapy. There are pros and cons to both, so we are hoping to talk to the doctor, pray about it tonight, and hope the right answer comes clearly to us. For now, we are leaning towards taking part in the trial.

I completely jinxed myself by saying we had the oral meds under control! I had requested a pill form of her antibiotic since she hated the liquid and because she had been taking the pill form of steroid so well. The antibiotic pill was freakin' HUGE!!! Like, the size of my head! I had to cut it into fourths just to get it in the pill crusher and when I was done crushing it all, Kendrie took one look at the mountain of white powder and burst into tears. So tomorrow, back to the drawing board, trying to find a medication that we can get down her without inciting WWIII.

The past three days have been very surreal. She seems to be responding to the steroids a bit more, which is a little depressing to witness. I'm glad to know personality alterations are temporary. (Most of the people I know who need permanent personality alterations are adults!!!) She has simply laid in bed, staring at the wall, without speaking, except to get up and eat. She is DEFINITELY eating more --- or more correctly, grazing more. Last night she slept until 5am, then got up and had cheese nips, potato chips, a grilled cheese sandwich, a bowl of oatmeal and a glass of chocolate milk, all in less than an hour. What is frustrating, though, is that she doesn't eat *all* of anything. She asks for it, we fix it, she takes three or four bites, announces she is done, then thirty minutes later is hungry again. Or, worse, she is hungry but can't decide what she wants. She and Blaine had the following conversation tonight, verbatim:

Kendrie, "I'm hungry"
Blaine, "What would you like to eat?"
Kendrie, no response.
Blaine, "Would you like macaroni & cheese?"
Kendrie, shakes head.
"chicken noodle soup?" shakes head. "bagel bites?" shakes head "oatmeal?" shakes head "chicken nuggets?" shakes head "toast?" shakes head "a breakfast bar?" shakes head "yogurt?" shakes head "pudding?" shakes head "pb&j?" sheakes head "lunchable?" shakes head "applesauce?" shakes head "grilled cheese sandwich?" shakes head "cereal?" shakes head "crackers?" shakes head "raviolios" shakes head "mashed potatoes?" shakes head "hot dog?" shakes head "bagel?" shakes head "ham?" shakes head ......... you get the picture (and bear in mind this conversation took place AFTER he made a special trip to Kroger at 8pm to buy her Cocoa Krispies cereal.) Finally, Blaine gave up and told her he couldn't help her, at which point she burst into tears and cried for ten solid minutes. Hmmmmm. I'm going to assume it's the steroids, or she's REALLY playing us!

Well, in an effort to curb my always flapping mouth, I'll end this for now. I'll try to update tomorrow night when we get back from the clinic. Send up good wishes that her blood counts are still good tomorrow and that she is a little calmer about having her port accessed. No procedures scheduled, which is great news.

A new friend I have made on my ALL support group list has the neatest idea on her daughter's website, and I am blatantly stealing it for Kendrie's as well. It's a sort of "through the eyes of Kendrie" feature, which I will try to put at the end of each of my own journal entries. In the meantime, thanks for checking in and have a great night!! ~~~Kristie

THE WORST THING ABOUT HAVING CANCER TODAY: Everything. I haven't quite found my happy mental place yet. :(

THE BEST THING ABOUT HAVING CANCER TODAY: Getting to stay home and do puzzles with Grandma McClung while Mommy ran her boring errands.

Tuesday, November 04, 2003

First. Post. Ever.

Wow, how do I even begin to sum up the events of the past month and the profound impact they have had on our family? I can't believe it's only been three weeks since Kendrie was diagnosed, and not much before that we were clipping along at a normal, enjoyable pace of life. Busy with school, soccer, Brownies, etc; the biggest challenge of my day was getting the kids to eat a vegetable or catch up on the never-ending cycle of laundry. Talk about a reality check!! :)

To put things in perspective, I'm going to go back in this first journal entry and try to update from the beginning. When all is said and done, this can be a personal journey memento for Kendrie to keep, peruse, or set fire to if she so chooses!

Those of you who know me, know I can --on occasion-- be somewhat of a chatty-cathy. (what an understatement!) So bear with me as I go "back to the beginning" and capture this experience from day one. If you intend to read the whole thing, then I suggest you grab a sandwich and a Coke first ... it might be a little on the lengthy side!

The history:

Aug 19, 2003 --- Kendrie seems tired, quiet, and falls asleep during our celebratory lunch with the G****** family from NYC. I (Kristie) was 24 hours away from giving birth as a surrogate mom to twin boys, and looking forward to spending time with the parents- and grandparents-to-be that day. I suspected Kendrie might be a little overwhelmed by all the new faces, so didn't think much else of it. She was not quite four years old and has always been a little shy around new people. For the next three days she complained of arm and leg pain and limped around the house, so after giving birth and then being released from the hospital, I took her to see a base pediatrician. He diagnosed a viral illness, told us to push fluids, tylenol for pain, etc. End of story. I attributed it to the flu, or maybe even growing pains. Who knows? What kid doesn't feel crappy every now and then?

Fast forward six weeks later, Oct 2, 2003

Thursday night, Kendrie spiked a fever at home that evening, but otherwise seemed fine. Off and on the next three days she complained of her arms and legs hurting and we couldn't seem to kick the fever, so Monday morning I made an appointment with her new primary-care manager, a PA (physician's assistant) in Family Practice who had never seen her before (interesting coincidence coming ahead) He didn't seem too concerned about the fever, but suggested a CBC (complete blood count) to rule out any antibacterial illness. Tells me if she's not better in a week or so to bring her back. Then, that afternoon, he called to tell us her blood levels look (and I quote) "interesting". Hmmmmmm. Could you *define* interesting, please??? Apparently her red blood count (RBC), which is normally around 12 in healthy children, was down to a 4.8. He wants us to see "someone" asap, and gives me a phone number to a specialist, with instructions to bring Kendrie back in to him on Wednesday for another blood test.

At this point, I'm thinking, "crap. Another blood test? Did you not hear her SCREAMING when the tech drew her blood the first time? And you want us to do it again??? When all she is, is a little anemic????" So I called the specialist's office, only to discover he is a PEDIATRIC ONCOLOGIST, for God's sake!! Why are they sending us to a hematologist/oncologist for a case of the flu, or some other such benign thing?? (in hindsight, I wonder if my subconscious began to suspect then that something was wrong, but my "bury my ostrich head in the sand" sense of denial refused to believe it???) The oncologist couldn't get us in for two weeks, so we went back to the base on Wednesday and the blood test revealed that rather than bouncing back, her RBC had dropped a little more, to 4.3.

The PA diagnosed her with something called TEC, a form of transitory anemia caused when the body, for some reason, quits producing new red blood cells, and which usually resolves itself on its own. Kendrie's RBC were low, but everything else looked fine. He got our appt with the specialist bumped up to the next Monday and told us just to watch her over the weekend. By now we noticed she seemed pale, fatigued, and was still running a fever, but we attributed it to her low RBC. I had kept her home from school all week and I honestly thought by Monday, she would be fine. After all, most viral illnesses run their course in about ten days, right?

Coincidentally (told you it was coming) the new PA to whom Kendrie had been assigned was also Blaine's PCM and had sat in on Blaine's medical review board after *his* bout with cancer earlier in the year. They had to determine his active duty status and in the course of the review, he and Blaine had developed a good relationship. So e-mails had flown for a day or two about TEC and what it entailed. So even though I didn't recognize it until later, already the blessings had started, in that we had a medical services provider who was already familiar with our family situation, Blaine's tumor, and cared enough to try and alleviate our fears and ignorance about what might be wrong with Kendrie. I guess the poor guy figured we had already been through enough this year............little did he know!

Friday night, Oct 10 -- I had taken Brayden to a Brownie meeting and Blaine called to tell me something was "wrong" with Kendrie. She had become unsteady on her feet, dizzy, and had even fallen down at one point. We decided to take her in to the local ER and make sure she was fine, which of course I knew she would be, but better safe than sorry, right? We dropped Brayden and Kellen off at a friends' house, with assurances we would be back in a few hours.

Blood tests (yes, again!! I was thinking!! Could they not quit sticking my child with a needle??? Didn't they see how hysterical she was??? This time they papoose-wrapped her, which might have been better for the tech, but was difficult for me to see, revealed her RBC had dropped even lower, to a critical level of 3.5. In addition, her hemoglobin was also critically low. There was really no choice, she had to be transferred to Children's Hospital in Macon for a blood transfusion. We were still thinking the diagnosis was TEC at this point and were hopeful that if the transfusion could "kick start" her body into producing blood again, things would quickly revert back to normal.

So, we spent Friday night, Saturday and Sunday in the Pediatric Intensive Care Unit of Children’s, and Kendrie received several transfusions of packed red blood cells. Each time her levels would rise, but then fall off again quickly. The kids were out of school for the weekend, and for Columbus Day on Monday, so Blaine and I were swapping off nights at the hospital. We had plans to meet our friends the Deatons in Nashville that weekend, which we had reluctantly cancelled. Thank goodness we did, but I was still disappointed. I can't believe I was so ignorant that despite all that was going on, I had no clue, and thought messed-up vacation plans were going to be our biggest let-down that weekend. Geez, what an idiot.

The oncologist that we were supposed to have seen on Monday had been called in on her case and told us he wanted to do a bone marrow aspiration (BMA) on Monday to try and determine why her body wasn't making any new blood. (quick biology lesson: all new blood in the body is produced in the bone marrow, then distributed throughout the body) They wanted to suck a portion of the marrow out through her hip with a long needle to analyze it and find out what was wrong. The test was done under IV sedation which meant Kendrie felt pain (there is no real way to anesthetize that far into the hip bone), but was given enough "good" drugs that she didn't remember it later. It was probably the first time I was glad for the IV, since it meant the test was easier on her, but had been cursing all those blood draws up until that point!

The test took much longer than we anticipated and afterwards the oncologist told us he had so much trouble getting any marrow out, (after sticking her and trying and failing in three different locations on both her front and back hip areas!) that he was worried the test would be inconclusive, so he wound up doing a bone biopsy, which means they shaved off a tiny portion of hip bone to evaluate. Again, I am totally clueless and have no concept that bone marrow being packed that tightly is even a problem. Once I determine Kendrie is resting comfortably back in her room, I head home to shower and leave Blaine at the hospital for his "shift".

A few hours later I am about to head back up to the hospital to swap off with Blaine again, and he tells me that the doctor is waiting for me to return to talk to us. I think I knew then what it was, but was still trying desperately not to believe it could be true. When I arrived, the nurse said, "ok, now that you're here, Dr. D. wants to be paged." Then when the doctor got there, he asked us to step out of the room, then into a vacant patient room and sit down.

Blaine had stayed in Kendrie's room with her and Brayden and Kellen, so I was there by myself and I knew what he was going to say before he said it. You know how you have those moments, some profound, some silly, some touching, that are forever etched in your memory? That's what that moment will always be for me. The doctor positioned himself between me and an outside window, so as I was looking at his face he was sort of a silhouette and I couldn't see him without squinting. I remember thinking, "the walls in this room are so blue I feel like I'm in a swimming pool and I can't see his face and if he's going to give me bad news it's really rude to make me squint and his hand is too heavy and I wish he would take it off my shoulder and why did they pick this awful blue paint color and that sun is hurting my eyes and maybe if I keep talking to myself I won't have to listen to the terrible words that are coming out of his mouth" and then he paused and said, "I'm so sorry, it's cancer." and my heart just exploded into a million tiny pieces.

Blaine came into the room a few moments later and I'm sure he knew immediately, since I was still crying. Then I became very compartmentalized and put the part of me that was freaking out into a small box to take back out again later, and immediately began drilling the doctor on what do we do next? He kept apologizing and I just wanted to say, "get on with it! What the hell do we do to fix it?? And where is the damn rewind button so I can go back about ten minutes and erase everything you just said and make it all go away?"

He explained that as the only hem/onc physician in Macon, his patient load just wouldn't allow him to take Kendrie on as a patient and he recommended we take her to Atlanta for care. He said that honestly, they could care for her better than he could. Even at that exact moment, with my mind going in a million frenzied directions, I remember being surprised that any doctor would admit that, and being impressed with his honesty.

So, the next morning, off to Atlanta we went. Kendrie and I were transported up via ambulance, and Blaine stayed behind with Brayden and Kellen to await the arrival of Grandma McClung, who, thank heavens, was able to drop everything and come to stay.

The next week, spent in the AFLAC Children's Cancer Center at Children's Healthcare of Atlanta, Scottish Rite, was a blur. Every time I walked in and out of the ward, and passed by the sign that said "Cancer Center" I felt like an intruder, an imposter. Obviously *MY* family had no business being there. As trite as it sounds, that's the sort of thing that happens to other families. A small part of me expected the nurses, or Kendrie's new oncologist, to walk in any minute and say, "oops! We got her chart mixed up with someone else's, and she isn't sick at all! Ya'll just go on home now, ok?! Nice meeting you, bye-bye!" I'm still so sad that didn't happen.

After repeat blood tests confirmed the diagnosis of ALL, the treatment plan was begun immediately. Kendrie underwent surgery to have a port-cath inserted, which consists of an internal catheter that threads from under the skin in her chest to a large vein near the collarbone, then inside the vein to the right atrium of her heart. This will stay in place throughout the entire treatment (2 years, 2 months) (barring any complications) and she can have blood drawn, or chemo drugs administered through it. Hopefully this should eliminate a good portion of the "sticks" in the arm and hand, although she still has to have a needle go through the chest to access the port.

Repeat blood tests in Atlanta revealed her blood levels were dropping again, so she received another transfusion (two? the whole visit is a blur) while there. They began chemo the day after her surgery, which in the hospital, consisted of an iv drug, shots, and oral meds, with constant monitoring. I have collected and measured and charted and dumped more urine than I ever care to for the rest of my life.

Right away we realized that perhaps only second to her hysterical fear of needles, shots, and band-aids, was going to be the challenge of getting these liquid oral drugs down her three times a day. Kicking, fighting, screaming --- this is the child who I can make cry with just a sharp word and who rarely crosses either Blaine or myself about anything. I couldn't understand why she was so defiant about the meds, until someone explained how awful they taste. I guess not all the medicine on the planet is orange or grape flavored, like children's Tylenol. Thus began our journey while in the hospital to flavor the meds ourselves with whatever we could find on hand -- mainly Gatorade, which doesn't work for squat, just in case you were wondering.

That week in the hospital will be etched in my memory as one spent carrying a 35-lb girl to the bathroom eight times a night, dragging the iv pole behind me, while she was being pumped full of IV fluids and couldn't walk herself to the bathroom. Listening to a social worker talk about support groups, supplemental insurance, Ronald McDonald house reservations, etc, and frantically reading the book she gave me that outlined patient care --- even using the light from the IV monitor at night so I wouldn't wake Kendrie once she was sleeping. Trying to memorize the entire book and understand enough to ask intelligent questions of the doctors and nurses. Of a daughter whose bubbly, fun personality seemed to just disappear before my very eyes; who became withdrawn and frightened, with pale skin and bruises and dark circles under her eyes, and the helplessness of knowing I can do nothing to make it all go away. One where I came as close to physically harming another human being as I ever have, when the lab tech not only missed her vein twice, blew it out, finally found another vein, and after drawing the blood, all the while I am having to hold down my own crying, hysterical child, has the absolute balls to come back in the room ten minutes later, after I finally got Kendrie calmed down, and tell me she forgot a vial and we would have to do it again. If I ever see that woman in a dark alley.............

There were some amazingly bright spots in the week also, however, and it would be remiss of me not to burn those into my memory as well. Of requesting that Kendrie be unhooked from her IV long enough for she and I to walk around the hospital campus on a beautiful fall afternoon, and enjoy the koi fish pond during a few moments of solitude. Of playing games and puzzles and coloring and reading with her, and the flashes of pure happiness when she would act like her normal, old self and grin or smile at something I said or did. Of the kindness of friends, and even some complete strangers, who took the time to call, e-mail, write, visit, and send care packages. I will never in a million years be able to express my gratitude to everyone for the support you have all given us, and I get a little sappy and weepy every time I even try, so I won't go down that road just yet...............

Anyway, after a week, on Oct 21, we were allowed to bring Kendrie home. You would think we would have been eager to escape the constant beeping of monitors, intrusion of medical staff, lack of our own space and things; but to be honest, I was frightened to leave. I felt safe and cared for at the hospital and cried when they told us to take her home. What the heck did we know about caring for a child with cancer? Much like taking home a newborn from the hospital, only without all the giggling and joy and excitement --- only the gut-wrenching fear that you will do something wrong, like give the wrong medication at the wrong amount on the wrong day or the wrong time, or forget the meds completely. What if she gets a fever and we don't catch it in time? Infection is the number #1 enemy for kids with suppressed immune systems, and Kendrie's was about as low as they can go at that time. The ANC number (absolute neutrophil count) needs to be above 1000 to fight infection, and on the day of discharge, Kendrie's was 45.

But, we came home and things were indeed better once we were sleeping in our own beds and spending time together as a family. Mom did a fabulous job running things in our absence, and friends locally made sure we didn't do without a meal for two weeks after arriving home -- what a treat! (actually, it's very easy to get spoiled that way!) Brayden and Kellen were glad to have all of us home, as well.

Oct 23, our first day of outpatient therapy at the cancer center. Kendrie had a morning appointment for her blood work and IV chemo drugs, and despite using the "magic" emla (numbing) cream around her port site, she screamed and screamed when they stuck her with the needle. I know anxiety can make things worse! Then we went to Day Surgery for her BMA, and a lumbar puncture (LP), also known as a spinal tap. Although the LP she had done in the hospital showed there were no leukemia cells in her cerebro-spinal fluid (Thank God!) those areas still have to be treated, since "normal" chemo drugs can't cross the blood-brain barrier. So treatment drugs for the spinal cord and brain are given through a spinal tap to make sure no cells wander up that way. Although it is a hassle to have to report to Day Surgery for these procedures (and I give every kid there the evil eye if they even wander in Kendrie's direction while she is so susceptible to infection!) it is well worth it since they put kids Kendrie's age under general anesthesia for these procedures. Much, much better for everyone involved. A long day, though. We left the house at 6 am and didn't get back until 6 pm, having hit Atlanta rush-hour traffic both in the morning and late afternoon. Ugh.

Oct 25 -- Egads, we have to add yet another horrible tasting liquid medicine to the plethora of crap we are giving her. Nothing is helping! We have tried flavoring the meds with chocolate syrup, strawberry syrup, pancake syrup, cranberry juice, grape juice, and have even bought blue-coconut slush syrup from Sonic -- nothing helps!!

Oct 27 -- Dr. B, Kendrie's oncologist, calls to let us know the results of her BMA from the previous week look good --- blasts (the bad cells) are down to between 5-23% the total cells in her marrow. This indicates she is responding well to the treatment. Prayers of thanks! If she had failed this first 28-day phase, called "induction", it would have meant a much more intensive treatment. So far, so good.

Oct 28 --we figured out Kendrie can take pills quite easily if we crush them up and mix them with a spoonful of applesauce. She actually seems proud of herself for figuring it out and doesn't fuss anymore. Now we have requested ALL of her weekday drugs be in pill form!

Oct 29 -- Kendrie's second visit to the Atlanta clinic - this trip does not go well at all. The child's not stupid, she remembers what happened last time, and after yet another huge scene, kicking and screaming, for port access for blood work and iv chemo, we go over to Day Surgery, only to have the anesthesiologist refuse to put her under for her procedures because her blood pressure is so high (155/110). So we have to go back to the clinic and have the BMA done under IV sedation again, which is incredibly hard for me to witness. I am holding her hand, stroking her forehead, and crying myself every time she cries out in pain. The nurses reassure me she won't remember anything, but that certainly doesn't help me at the time, and I am a wreck. Then, the nurse and child life specialist have the audacity to be NICE to me, and bring me water and kleenx, which of course makes it even worse and I cry harder at my failure as a parent to protect my child from these awful things that are happening to her and which she just doesn't understand, bless her little heart.

So, that pretty much brings us up to current. We got a phone call from Dr. B today, telling us that the BMA from last Thursday shows her blast count is ZERO!!!!! That is fabulous news, and means she is in remission! Of course, 98% all children achieve remission during this initial induction phase, but it still thrilled me to hear it.

So far, her only complaint is stomach pain, and she's a little wobbly on her feet. (looks a bit like her Grandpa Calvin!) :) The steroids aren't affecting her in the "typical" way they affect most children. She is not gaining much weight, and not eating us out of house and home, although she is grazing a lot and I'm starting to feel like a short-order cook, preparing something different every thirty minutes. And she has a real affinity for mac & cheese and gets up at 3am most nights for a bowl! She isn't experiencing the usual rages like kids on steroids can. Her moods are exactly the opposite, very withdrawn, quiet, and will spend hours just lying on her bed by herself, staring at the wall. I'm not sure how much is medicine and how much is simply 4-yr old trying to process all that is happening.

We have two weeks of induction left and then we begin the second 28-day phase called consolidation. Then, she will begin one arm of the clinical trial known as CCG 1991. We just have a few more questions for her doctors before agreeing to the trial. Total treatment time is two years, two months, but could be longer if she is hospitalized for fevers, infections, etc, and they have to postpone any of the chemo. So our joke around the house this week is "two weeks of therapy down, one hundred ten to go!" Not really funny, I know, but you gotta find humor where you can, right?

OMG, a novel, I'm telling you, a NOVEL! Thanks for putting up with my rambling this long, and I won't hold it against you if you had to cut your losses and just skip to the end!