Wednesday, May 26, 2004

“The Kindness of Strangers. And Psuedo-Strangers. And Even Some People We Already Know, Too.”

You know, up until recently in my quasi-adult life I had been operating under the (obviously false) illusion that I was a relatively charitable, kind, thoughtful, giving sort of gal. What proof, you ask? Oh sure, there’s the really *really* obvious giving, like donating to charities (MDA for me and Ducks Unlimited for Blaine) and tithing for church. Dropping change in the Ronald McDonald buckets around town. Donating blood for the Red Cross. Donating hair to a Locks of Love charity, which I did a few years ago for bald kids. (Ironic, huh?) Buying Girl Scout cookies (does charity count if I eat the cookies myself?) and supporting a local lemonade stand or making something for a bake sale.

I tried to serve my fellow man in other ways as well: clothes to Goodwill, food to the church pantry, waving down the firefighters in busy intersections on Labor Day to drop money in a boot, hell, I even brake for squirrels. But no amount of giving prepares you for being suddenly on the RECEIVING end of such kindness!

This week is not even 72 hours old and we have been on the receiving end FOUR times already! It’s almost enough to make a family blush! With gratitude, of course.

First, to the kind person who submitted Kendrie’s name to the people who run Basket of Hope, the program that delivers baskets to children newly diagnosed with cancer. “Basket” is an understatement. It's like calling Lake Erie "a little puddle". You should have seen this thing. Santa should hang his head in shame. Thanks to Pam and to Angela for such a wonderful, wonderful delivery, from three very happy children!

Second, to Ms. Ella at Daddy’s work, for giving each kid a goody bag stuffed full of fun things to do and eat (“Kellen, stay AWAY from the Pez!”) on our vacation this week. It has taken every bit of parenting savvy I possess to convince them to wait until tomorrow when we actually leave before digging in. Ms. Ella, the kids thank you, and in anticipation of a car ride, a plane ride and another car ride to get where we need to be (Holy crap, it’s going to be a long day) Blaine and I thank you as well!

Third, to Mrs. Smith’s 2nd grade class at Timmerman Elementary School in Pflugerville, Texas (c/o Madison R.) for making and sending so many beautiful get well cards to Kendrie.

She immediately sat down to “read” them all today and is sleeping with them all around her in bed as I type this. She’ll probably wake up with paper cuts on her cheek, but she’ll be happy! Thank you, Madison, for your thoughtfulness in sharing Kendrie with your class!

And finally, to the anonymous person who gave me the final pull I needed out of my pool of despondency (aka self-promoted pity party). If you’re someone who reads this journal, then let me say Thank You for the card, the gift, and most of all for the incredibly supportive note, right when I needed it. It was a real boost and I truly appreciate it. (And you know I can’t wait to go eat!)

Honestly, it’s been a bit difficult to go from “giver” to “taker”. Maybe it’s from being a military family all these years and usually doing things on our own. Maybe it’s from being just plain pig-headed, who knows? I’d like to think I can do it all myself …. But of course I can’t. I spent yesterday tied up with the here-and-now aspect of cancer; putting “magic cream” on Kendrie’s arm and then wiping away the tears when she realized what that meant, driving her to the lab, holding her while she fussed and cried during the blood draw, making sure she wasn’t around anyone sick in the lab, then spent the afternoon playing phone-tag-referee between the lab here, and the clinic in Atlanta, to see why no one was getting the blood count results they needed when they needed them. So although I took care of the tangible, physical needs from yesterday, I didn’t think to take care of emotional needs, like the happiness a basket or get well card would bring my daughter.

Thankfully, the “Oh my goodness, this poor family is falling apart, someone send over a meal before they crack!”----urgency is gone, but it’s amazing to me that even now, seven months after diagnosis, so many people still take the time to show our family how much they care. I don’t mean gifts … or treats … or packages …. (although of course that’s what my KIDS think it’s all about!) but the phone calls, the e-mails and messages in the guestbook, the cards, the prayers … I’m rambling now, aren’t I?

I don’t know how we can ever repay it all, except to try harder to help others. I have no sense of entitlement, but a sincere feeling of appreciation, and humblement. (Is humblement a word???) Humbleness? Well, whatever the correct word might be, we feel it and say thank you.

Love, Kristie


BEST PART ABOUT HAVING CANCER TODAY: If that smile up there doesn't say it all, then what does?!? And, I get to see my Grandma and Papa and Granny and Grandad and Aunt Kelly and Uncle Cliff and my cousins Dalton and Landon and Lawson and Daxton in just two more days, wahooooooooo!

Sunday, May 23, 2004

“Wow, What a Difference A Day Makes!”

(or) “The Man Who Invented Zofran Should Be Sainted”

You know, I was only kidding when I said the visit from the twins was what had been keeping Kendrie’s chemo side effects at bay this past week. Deep down, I just knew it was because my child is a super-hero, able to rise above the nausea and vomiting that often afflict so many others undergoing the weekly drudgery of injecting poison in their veins. And wouldn’t you know, not half an hour after our company left us Thursday night, she started throwing up??? I guess there’s more to be said for distraction techniques than I gave people credit for! Serves me right for being a Doubting Thomas. Once again I say thank you to the chemist who came up with the anti-nausea drug, Zofran, so our lives can continue in a semi-semblance of normal.

Friday, the next day, was our annual Field Day Extravaganza, and let me just say that Kendrie’s heart was NOT in it this year. In case you don’t believe me, take a look at this picture of her.

Keep in mind that there were close to 600 kids nearby, showing off their mastery of Olympic-level athletic skills in complicated events such as running with beanbags on their heads, jumping through hula hoops, balancing eggs on spoons; you get the picture. She just doesn’t seem too impressed, does she? I might be biased, but I like to think Brayden and Kellen were some of the best spoon balancers and hoop jumpers out there.

Now, before you go thinking I’m a completely cold and callous parent who would leave a child this miserable in a chair all morning …………….. well, actually, I did. But she perked up at lunch for a moment and I called Blaine to come from work and spend the afternoon with her while I worked in the snack tent, dodging exploding 2-liters of strawberry soda and trying to maintain order amid the chaos of dozens and dozens of thirsty, crabby, hot, hungry seven year olds, all yelling for service and shaking Ziploc bags full of quarters in my face (little obnoxious hooligans). All in all, a fun day. Once again, Zofran to the rescue and the rest of the weekend progressed at a more enjoyable pace. We even managed to go swimming today, which is pretty much the highlight of summer for my kids. (We’ve got the sunburns to prove it, and I even put sunscreen on them, twice!)

So, anyway, enough about this cancer stuff with all its puking and whining. I need to talk about much more pressing matters --- like the fact that I think my kids are the weirdest children on earth.

First of all, Kendrie, with whom I had the following conversation yesterday:

Kendrie: “I want to wear boy clothes. I want to wear Kellen’s underwear and pajamas

Kristie: “But you’re a girl, why don’t you wear girl clothes? Or at least wear your own pajamas?”

Kendrie: “When I grow up, Jesus is going to make me into a boy

Kristie: “Oh really? Jesus is going to make you into a boy? What makes you say that?”

Kendrie: “Kellen told me

Truthfully, I could care less if she prefers Scooby Doo underwear to Dora panties, but I’d prefer NOT to think we’re headed for any sort of gender reversal surgery!

And I’m not so sure the other two are doing much better, what with their own weirdness and all. Here’s a conversation that took place between the three of us this weekend:

Brayden: “OK, here’s the magic trick. Now what’s the magic word?”

Kristie: “Abracadabra?”

Brayden: “no”

Kristie: “Supercalifradgalisticexpialidocious?”

Brayden: “um, no

Kellen: “Gertrude Hamhocker?”

Kristie: “who???”

Kellen: “Gertrude Hamhocker. Mom, how many syllables in Gertrude Hamhocker?”

Brayden: “who on earth is Gertrude Hamhocker?”

Kellen: “the President of the United States. No, just kidding. That’s George Washington

Kristie: “I think you mean George Bush”

Brayden: “You know, I don’t understand why they call him George Washington”

Kristie: “I’m telling you, it’s George Bu--, oh, never mind

Kellen: “I can understand the ‘Washington’ part, since he lives in Washington … hey, that makes sense! But I don’t understand the George part.”

Brayden: “I know! George—a. Like where we live! Georgia Washington!!!”

Kellen: “Mom, how many syllables does Georgia Washington have?”

So, as I type this, I’ve got one daughter sleeping in her brother’s Batman underwear and dinosaur pajamas, and two other children who I think need either therapy, or summer school history lessons. I’m not sure which.

I’d like to encourage you to check out the journal entry of May 20 at Nicky's Page for a GREAT Top Ten List written by his mom on Nicky’s 6-month anniversary of diagnosis. Not only funny, but all true!

And kudos to our friend Kim, who not only thrilled Kendrie beyond belief by sharing the twins with her last week, but also for donating TWELVE inches of hair to Locks of Love right before she made the journey to Georgia. Way to go, Kim!

Wish us luck this week as we attempt our first serious vacation since Kendrie’s diagnosis, complete with air travel and rental cars. My concerns aren’t really cancer-related, but more the normal concerns that pop up when traveling with three kids under age 7; “I’m hungry, I’m tired, I’m thirsty, I’m bored, Where’s the restroom?” etc etc. Actually, now that I think about it, with the exception of the restroom part, we have pretty much the same conversation every day in our own house! But wish us luck anyway!

Take care,

WORST PART ABOUT HAVING CANCER TODAY: Having parents who force-feed me anti-nausea medication.

The four or so hours after the anti-nausea medication and how fantastic I feel then!

Wednesday, May 19, 2004

“The Best Medicine”

Week #7 of IM #2

Thanks so much to all of you who humored me through my latest emotional crisis and tantrum in the last journal entry. Had I known how wonderful the messages in the guestbook, from parents and friends of every walk of life would make me feel, I would have started having my mini-nervous breakdowns in public a long time ago! As one friend of mine so kindly pointed out …. I have been an un-empathetic grump-butt for years, but isn’t it convenient to have cancer to blame it on now???

Kendrie had her routine clinic visit on Monday of this week, receiving zofran, vincristine and methotrexate through her port. Despite the continually increasing dosage of the methotrexate, her counts have stayed strong, which is wonderful news. She will have her labs done locally next Monday (heaven help us, that means a peripheral blood draw, NOT her favorite thing in the world!) and unless the counts have fallen enough by then to warrant a transfusion, she will be on a small break from chemo (two weeks) before the next Delayed Intensification cycle begins. (DI #2, for all you chemo-junkies out there.) And we are even postponing the start of that cycle by a week for vacation, so having three weeks with nothing but her weekend antibiotic medication will seem like a picnic! Granted, “cancer picnics” usually involve lots of rain and ants and spoiled mayo in the potato salad, but a picnic nonetheless!

At the clinic visit Monday, Kendrie continued the recent downward trend of protesting against her exam and port access. It takes her a LONG time to warm up to the techs and nurses (the phrase **Millennial Ice Age** comes to mind) and this week she had a new tech, new nurse, AND a new Nurse Practitioner. Geez, three strikes. (Obviously, with the wonderful huge, new and improved AFLAC Cancer Center comes the need for new, additional staff.) The one constant is the fabulous Child Life Specialist, Ms. Laura, who has been there for Kendrie (and Kendrie’s mom!) since Day 1. For a really good commentary on the role of a Child Life Specialist, check out Julianna Banana's journal entry of May 15.

Anyway, Ms. Laura explained that it’s not uncommon for children to backslide in their comfort level at times throughout treatment. The phrase she uses, a lot, to reassure Mom is “age appropriate behavior”. I suspect that is “child life speak” for “good god your kid is a BRAT, lady, but I’ll be polite because that’s my job!” but either way, she encourages a lot of role playing and distraction techniques to help Kendrie cope. I can't say as I blame her, I wouldn't particularly relish the idea of someone poking a needle in my chest, either, but it's a little frustrating to think we've been doing this for seven months now and she's still frightened by it. Make no mistake, we no longer have the thrashing/screaming/sobbing child we had at the beginning. Now it's more of the squirming/whimpering/crying variety.

So speaking of distraction techniques, I can safely say we discovered the best distraction technique EVER this week! After the clinic visits the past few weeks Kendrie has suffered slightly from nausea, vomiting and mouth sores ….. but so far this week she is so busy playing self-professed babysitter to our friends Austin and Dylan, visiting from Los Angeles with their mom, Kim, that she hasn’t been sick yet!

Don’t get me wrong, she’s still asking for her anti-nausea medication, but I do think the fun of having our friends here has helped keep her mind off of feeling lousy. The babies are cute, fun, entertaining and engaging. Does this mean I’m willing to have twins to ensure the rest of Kendrie’s chemotherapy go well??? Um, no. But I sure wish Kim and her husband Kenny lived close enough that we could baby-sit more often! Having a friend kind enough to take the red eye from LA, with twins, and then pack up the babies and go to an Atlanta clinic visit with us is definitely the Best Medicine! Thank you, Kim!

Hope you all have a great week!
love, Kristie ps. If you're so inclined, please send up some positive thoughts this week, as Brayden, our 7-yr old, was diagnosed with strep throat on Monday. Normally, I would file that under "minimally annoying" but obviously it's a whole different ball game if Kendrie were to get strep throat. Being the nature of the beast that strep throat is, you don't know a child has it until the contagious period has already passed. So far, so good, as we really don't want Kendrie to catch it. So wish us luck!

WORST PART ABOUT HAVING CANCER TODAY: Um, actually, I'm not feeling too bad!

BEST PART ABOUT HAVING CANCER TODAY: I get to stay at home and play with the babies while Brayden and Kellen have to go to school. I help Ms. Kim feed them, wash them, and play with them. I pretty much leave the diaper changing up to her, but to be honest (don't tell her I said this) I don't know how she's gotten along without my help for the past six months!!!

Wednesday, May 12, 2004

"Where has all my empathy gone?"

IM #2, Week 6

Sometimes, when I’m walking around thinking everyone else on the planet needs a good, swift kick in the pants, it suddenly occurs to me that *I* am actually the one who needs a good, swift kick in the pants. And what’s funny is that realization can be so subtle that I don’t even get it at first! (surprise, surprise, I’m sometimes considered ‘obtuse’).

The past few days I have been having a bit of a pity party for myself. Nothing major, no crisis; just a whiny, grumpy, bitchy sort of pity party about how stupid and annoying everyone else in the universe is. (Readers of this journal and present company excluded, of course).

It started Monday night at Kellen’s t-ball practice when Kendrie came over and said a couple of older (as in eight or nine year old) girls on the playground were making fun of her. Normally I subscribe to the “just ignore them and maybe they’ll go away”-style of parenting, with an occasional foray into the “it takes a village” theory, whereby I will say to Kendrie, “Well, honey, they probably aren’t used to seeing a kid with no hair, so try to just be nice to them”, hoping we can all grow together in peace, love and harmony. I really want her to be able to handle this, and try not to immediately leap to her defense like a Mother-Bear on crack.

Monday night, however, for some reason, grown-up sensibilities just left me and I stomped over to the playground equipment and walked right up to the alleged offenders and said, “Do you girls have a problem or something? Because if you have any questions you’d like to ask, then go ahead and ask them. Otherwise you’re being rude and I suggest you leave this little girl alone!” The girls, suddenly deaf and mute, just shook their heads and then slinked off the playground. On the one hand I was glad I stuck up for my daughter but on the other hand, hello, could I have done it without acting like a teen bully myself?

Then last night I had a PTO meeting where a parent stopped me to ask, “How’s Kendrie?” “Fine” (with a smile) is my knee-jerk reply. “She’s fine, really? Everything’s ok?” and I sensed that this person just wanted reassurance that everything was indeed fine, and that they received brownie points for asking. I thought, I should just be truthful and blurt out, “Well, no, actually this phase of chemo is getting kind of harsh and she’s nauseous and barfing a LOT compared to normal, and feels tired and crabby and whiny and cries and fusses a lot which of course makes me crabby and fussy, but yeah, otherwise everything is ok.” Did I say that? No, of course not, but I thought it.

Then this morning a friend called to invite us to lunch at an indoor play-land. To the parents of an immuno-suppressed child, there is no place on earth as foreboding as an indoor play-land. I could just as conceivably imagine taking her to, oh, I don’t know, a play date in *HELL*, as taking her to a play-land to share confined space with stale air and inside play equipment with other little kids.

As a last annoyance, I went to a retail store today and paid for something with my Toys ‘R Us credit card. The clerk (young, too much eye makeup, etc) said, “Oh, Toys ‘R Us, I was just there last night buying my daughter a toy.” I was still in a bit of a snit over the play-land issue and wanted to say, “oh really? A TOY? I had no idea they sold those there” but of course that would be rude and while I might be obtuse I’m certainly not rude so instead I just smiled. Then the clerk said, “She had pink eye last week and was so miserable. Poor thing. I felt so bad for her and all she had to go through with pink eye that I thought she deserved a toy.” And the outside of me was making appropriate clucking noises with a “oh, that’s too bad” look on my face, but the inside of me was really about to snap, “Pink Eye??? Are you freakin’ kidding me???? My kid has CANCER for heaven’s sake! You want to talk about deserving???? If your kid gets a toy for pink eye, then I think my kid deserves a time share in Santa’s Workshop at the North Pole or something!!!”

What is the matter with me? I’m annoyed at the parent who is kind enough to ask about her well being, and I’m annoyed at the parent who obviously isn’t thinking about her well being, and I’m even annoyed at the total stranger who has no clue who I am or who my daughter is and who has normal problems of her own, which I somehow have absolutely NO patience or time for. How are people supposed to win with me? I am tired of leukemia and treatments and statistics and medications and side effects overshadowing every thought I have in my head but I can’t seem to stop it. Life is going on for everyone around us, as it should, but I can’t seem to focus on anything but this stupid, stupid cancer. I have turned into a completely self-absorbed personality and wouldn’t blame people for avoiding me like the Black Plague.

So fast forward a few hours to lunch today. Blaine is practically running to the bathroom with Kendrie because she’s fixing to throw up and the only receptacle we have is her Batman ball cap and she would disown us if we let her throw up in it …. And I’m sitting in the booth thinking, “What on earth made me think we should attempt lunch in a public restaurant??? What was I thinking? Did I want the Oriental Chicken Salad that desperately bad???” and when they return, Kendrie is beaming from ear to ear because she noticed the cherries at the bar (en route to the bathroom) and knowing cherries are Kellen’s favorite snack in the entire world, she asked the bartender for some. So she’s looking at me from across the booth, and holding onto this cup of cherries and she says, with the biggest smile on her face, “Mom! Kellen is going to be SO excited about these cherries!” and I see her happiness, and the way the sun is coming in through the window and shining on her beautiful little bald head with just the slightest bit of yellow-blonde duckling fuzz on it, and it’s like my heart just swelled up full and I suddenly realized what a bitch I’ve been.

As many people as have gotten on my nerves the past 48 hours, that many people and more have done kind things for my family in the same time frame. To Mary from Ohio, and Jennifer C. from Lighting Children’s Lives …. Thank you both for the care packages you sent for the kids. I’m always a little hesitant to mention things like that in the journal because I don’t want anyone to think I am hinting for more stuff, but it definitely deserves mention because my kids got such a kick out of the neat things, so thank you. And to my friend Kelly, for letting me drop Kendrie off for some very last minute babysitting on Monday. A lot of people say, “If there’s ever anything I can do to help, just let me know”. I believe most people are sincere in the offer, but it’s very difficult for me to call people and ask for help. Thank you to Kelly for being the kind of friend who doesn’t make me feel weird for calling and asking.

And to all of you who support us online; both through my online community of cancer parents, and everyone who is kind enough to leave messages in the Caringbridge guestbook. Whether my current personality defect is cancer-related, or parent-related, or some other type of crisis-related, it’s wonderful to read the notes of encouragement from others who have been there, done that, and come out on the other side intact, and also those going through the same issues even without cancer involved, so at least I know I’m not alone (and that my children are not actually headed for jail or a lock-down facility.)

And hey, if you guys see me sliding backwards down Empathy Hill on my very generous behind, please don’t hesitate to step up and administer that swift kick I was talking about earlier!

Thanks so much,

WORST THING ABOUT HAVING CANCER TODAY: I am starting to feel kind of crummy.

My dad is still off work from his surgery so I got to stay home and take a nap with him while my mom ran her three bazillion errands today.

Sunday, May 09, 2004

“Out of the Mouths of Babes”

aka Happy Mother’s Day

You know that cartoon, Family Circus, about the family with four little kids and every Fathers Day one of the little kids “draws” the cartoon to give his dad the day off? I’ve decided that today, for the first Mother’s Day I am spending as a “cancer mom”, I’m giving myself the day off and want to let some of the wise, profound, and occasionally funny things that kids say fill the journal entry instead.

Before I pass the baton, however, I’d like to wish all of you a Happy Mother’s Day. First to my mom Betty, who proved again last week that even at the age of “achooooo—two!’, she’ll still drop everything to help one of her kids in need. My sister Kelly and I, and Blaine and Cliff by marriage, have all been very, very blessed. Second, to all the moms out there spending this day in the hospital with their sick children, or sitting by the grave of a child, my best wishes and condolences. And to all the moms whose kids are home and healthy, give them an extra hug today and thank God for the noses and tushes that need wiping, the laundry and homework that need done, the taxi-cabbing, cooking and cleaning that are your life. Really, what better life is there? None.

Zachary Finestone is a Caringbridge site I have been following for months. Normally written by his dad Scott, whose sense of humor is twisted, wrong, and highly enjoyable, go to the May 5 journal entry for the essay by Zach titled, “Why I Hate Cancer.” I think Zach said it better than most adults do. Grab a Kleenex before you read this essay ..... but if you go back through the journal entries and read some of Scott’s older entries, grab a Depends.

I know many of you are closely following the current transplant journey of Spencer Rocket. I especially love the conversation Spencer and his dad had in the May 6 journal entry. Nothing like the honesty of a child, eh???

And for another laugh to go Christopher’s Page and read his poem, “If You Give A Kid On Steroids…..” in the May 6th journal entry. Very, very clever, very, very true!

And out of the mouth of the Mom of a Babe (fitting for Mother’s Day, don’t you think?) I encourage you to go to Katie’s Page and read her mom Sue’s journal entry for April 27th, discussing the “stinky cheese factor” of having a kid with cancer. Sue really hit the nail on the head for how I feel many days with Kendrie.

Sue also gave me permission to reprint a section of her journal where she explains (in much better terms than I am able) the clinical definition of “remission” and why kids in remission still need chemotherapy:

“I had a conversation today that I have had many many times over the last 8 months. Most people do not understand why if Katie is in remission she needs to continue chemotherapy for two more years. Part of that answer is that "clinical remission" is defined as less than 5 percent blasts or cancer cells in the bone marrow and none in the spinal fluid. Remission is based on the technology they had to look at cells way back in the 1940's. In 1940, when they looked through their microscopes they didn't see anymore cancer cells and they thought the cancer was gone. With modern technology they can find one cancer cell amongst thousands of normal cells. We are told that blood cancer starts with one bad cell reproducing - so in theory you only need a single cancer cell to survive for the cancer to grow back. So the answer really is that "clinical remission" is only a baseline to which all patients need to get to proceed to the next stage of treatment - it does not mean the cancer is all gone. (Although that is what we tell Katie - because it seems more hopeful and glass half full kind of thinking is important when dealing with cancer) Presumably 2 more years of pumping chemo into Katie's body will kill off all of the cancer cells in her blood.”

Thanks, Sue, for letting me blatantly plagiarize your page!

Well, I guess that’s it for now. I’m off to sit in front of the tv and eat bon bons on my special day. Kidding, of course --- If you want the truth, I will be hiding, with Blaine’s Mother’s Day Blessing, in my scrapbooking room all day, indulging in my latest favorite craving for beef jerky, and waiting for him to grill out at dinner. Sounds like a pretty fabulous day to me! And sometime in there I’ll manage to squeeze a hug or two out of the three little rugrats who give meaning to my day and allow me to enjoy the blessing of being a Mother. Thank you Brayden, Kellen and Kendrie; I love you, Mom.

Thursday, May 06, 2004

"It’s a 4-yr old thing!"

Again, what’s with the stupid Family Fun parenting models of laughing, happy, always-joyful families making me feel inadequate!?! Or maybe *I’m* fine, but Kendrie sure as heck has her moments (sometimes unbearably long moments that seem to last all day long!) when she isn’t the smiling, pleasant model-child like the kids in the magazine. (Do you think it matters that the kids in the magazines all have hair? Yes, three cheers for advertisers for putting photos of kids in wheelchairs in magazines, but come one! Let’s see some baldies out there!)

Anyway, since the last time I checked our family tree, there was no actual, hard physical evidence of SATAN sitting on any of the branches, and she hasn’t been on steroids for two months, then I just have to assume “it’s a 4-yr old thing”. Here are a few of the issues with which we have dealt the past few days, which I repeat in this forum just so none of you are surprised when 'the men' show up with a little white jacket for me.

CLOTHES: I gave up a long time ago trying to get Kendrie to wear anything but jeans (or jean shorts) and a t-shirt. Now we’ve just topped off the ensemble with a ball cap and that’s the extent of it. So far, she has been the epitome of “low maintenance” when it comes to fashion. Suddenly, however, the other day, she decided she had an opinion ….. and heaven help us she wouldn’t budge. I bought her a new shirt with a number on the chest (like a sports jersey) and a picture of some kind of sparkly fruit on the back. Obviously, wearing the shirt properly means you can’t see the fruit, no matter how sparkly, so she insisted on wearing the shirt backwards. Fine. Whatever. The problem arose when she said the tag was “itching her neck” and wanted me to cut it out. For some reason this annoyed me and so I said no ….. (will I never learn?) and that upset her. Greatly. I gave in on the hiking boots that she has worn pretty much every day for the past four months, and the super-hero ball caps she insists on …. But something about cutting off that tag so she could wear the shirt backwards just so she could see the sparkly fruit … I don’t know, it just rubbed me wrong. Lord knows I paid for it all day with complaints and tears. Would she even consider turning the shirt around properly??? Heck, no. That was too much work. But she had the energy to whine and cry about the tag for twelve solid hours. Next time I’m just grabbing the scissors.

FOOD: OK, as a special treat, I took her to a local bakery one morning while out running errands. We stood in line, I showed her all the choices, she stated she wanted a *roll* (Kendrie-speak for cheese bagel) “Just like Mom’s”. I double checked, “Just like mine?” and she replied, “Yes, JUST like yours, only fat” (ie., not sliced in half) So I bought two cheese bagels and gave her one. Immediately she said, “I wanted it cut in half”. So I grabbed one of those little flimsy plastic knives and sawed it in half. Then she informs me she doesn’t like cheese bagels. I said, “Kendrie, you said JUST like mine, and mine is cheese” to which she replied, “yes, just like yours, but different.” (sigh) Just so you don’t think I cave to all demands, she did go without a bagel that day.

CONTROL ISSUES: We went to the commissary (military grocery store) on base and I promised her ahead of time that she could ride in one of the special carts with the big-kid seats up front, even though they are 30-feet long and incredibly hard to steer, as anyone who has ever used one of those carts can attest. I normally wind up knocking over more displays and doing more damage than the elderly people in the motorized shopping chairs. Naturally, when we arrived at the commissary, every one of the special carts was already in use by other stay-at-home moms like me. I quickly looked around to see if any of them were close to being finished, and the answer was no … half-full carts all around. So I explained to Kendrie she would have to ride in a regular cart. She was adamant that the little seat up front was for babies and she wanted to ride in the big cart part. I asked where was I supposed to put the groceries? And she said I could push two carts. She refused to get in; I suggested she walk; she said her legs hurt; you know how it goes. I was getting very frustrated until some old man witnessing the entire scene said out loud, “Looks to me like he just needs to walk” --- Rude. If *I* want to be mad at my spoiled rotten brat that’s my business, but people should keep their opinions to themselves in public. The one good thing to come out of it was-- it WAS the first time Kendrie used the phrase I taught her: “I’m not a boy, I’m a girl with cancer!”

MUSIC: OK, this is where it gets bizarre. Riding home after the commissary episode, Kendrie announced she wanted me to sing the “bridge” song. The bridge song??? Yes, the bridge song. So I launch into the most obvious choice, “London Bridge is Falling Down” only to have her slap herself in the forehead, roll her eyes, and say “Not THAT bridge song!” Hmmmm. Just how many bridge songs are there? So I tentatively begin with “Bobbie Jo McAllister jumped off the Tallahassee Bridge” in my best smoky voice karaoke club imitation, all the while thinking “Bobbie Jo? Is that right??? Or is it Billy Joe? What is the rest of that song? Tallahassee Bridge? Waxahachie Bridge??” Kendrie, again, says out loud, “Not THAT bridge song, either!” So I’m really thinking now, bridge, bridge, bridge … what on earth is she talking about and Boom! It comes to me, and I burst out in my best singing voice (the one that Clay Aiken would be jealous of) “Like a BRIDGE over tro-houb-led water …. I will lay you Dooo-ooo—ooo-wnnnnnnn” and I’m telling you, even Simon and Garfunkel could not have done it better. After my grand crescendo of a finale, there is total silence from the back of the van and then I hear Kendrie’s little voice, “what the heck was that?” So, realizing I’m 0 for 3, I tell her I have no idea what bridge song she means, and the entire rest of the drive home she keeps insisting I sing the song. Like if she demands it enough times, the words and tune will just suddenly pop into my head.

What is up with my child???? Does anyone know what the bridge song is? I’ve said all along that our family will need therapy before this whole leukemia thing is over and done with, but now I’m thinking maybe behavior modification therapy, for HER, needs to start sooner rather than later. A friend of mind who shall remain nameless (I don’t want to embarrass you Jadine) was talking about her boys and said she was considering (and I quote) “stapling their little mouths shut” and I’m beginning to think she might be on to something.

Let’s see, what else? We had a clinic appointment today for IV meds; vincristine and methotrexate, plus the IV zofran ahead of time. She also had a spinal tap and received more methotrexate in her spine. An unexpected bonus today was running into our friends Regina and Wild Girl Madie at clinic today. Kendrie and Madie were getting spinals in the new procedure rooms right next to one another and afterwards we went to the park for an impromptu picnic. You should have seen the two of them parading their treasure-box items through the clinic afterwards and showing off – Barbie/Kelly stuff for Madie, and a 4-ft Hulk puzzle for Kendrie. (I’m telling you, she doesn’t have a girly-bone in her whole body!) They were a sight to see and made everyone smile. I did have a terrifying moment at 4:55 this afternoon when our phone rang -- of course my mind immediately leapt to it being the oncologist, calling us at the end of the day to tell us the spinal fluid wasn't clear. Never so glad to hear from a telemarketer in all my life.

Anyway, if you have a few spare minutes, please visit the sites of Spencer Rocket, who just had his transplant yesterday, Cameron, who recently returned home after having his bone marrow transplant with his brother Chad as a donor, and Christopher, whose family is making the decision now about how to treat his recent CNS relapse. As hard as this whole leukemia/chemotherapy crap is, the paths their families are following are even harder and I’m sure they would appreciate the support.

In the meantime, I hope you all have a great weekend!
Love, Kristie


Getting my port accessed and having a needle stuck in my back. I knew what was coming the minute my mom pulled over on the highway and started putting that magic-cream on my back.

That's easy! Having lunch and playing in the park with my sister-friend Madie because she is a little kid like me who has sick blood (just like me!) and we have fun, fun, fun together!!

Saturday, May 01, 2004

"Home, Safe and Sound, Albeit a Little Black and Blue"

Thanks so much to all of you for your words of support and encouragement for Blaine during his surgery this past week. Again, I don’t have time for a long journal update (Hey! Was that a sigh of relief I heard from someone out there?!) but I wanted to let everyone know the surgery went very well and he is back at home today. We both appreciate the well wishes, a lot.

We drove up Tuesday, he had the surgery on Wednesday, I stuck around until Thursday afternoon trying to “help” him (which somehow loosely translates to digging in the car for spare change so I could sneak to the vending machine downstairs and buy him twenty bazillion cups of coffee despite the nurses insisting he was on a “clear” liquid diet the first two days). Then, Thursday I drove the three hours home because the kids had Field Day scheduled for Friday and heaven forbid I miss an event as exciting and important as the yearly Field Day. Naturally, it goes without saying, Field Day was rained out this year, so Saturday morning (I guess that was today…. It seems so long ago!) I drove back up to Augusta to pick him up and bring him home.

I can’t believe that in my last journal entry about him cutting all his hair off I forgot to mention this great piece of hair-related news: our friend Erin R. ALSO had a pretty substantial haircut last week – donating EIGHT inches to Locks of Love! She looks fabulous and her hair is so thick I know they will be able to help lots of kids with her selfless contribution. Way to go, Erin!

And in the “it’s a small freakin’ world”-category, Blaine’s roommate at the hospital this week was a very nice gentleman whose grand-daughter was diagnosed two years ago, at age 5, with ALL. She relapsed while on treatment and had a BMT, and is now a happy, healthy 7 yr old, doing great. What are the odds, huh? But it’s always encouraging to hear success stories, so we certainly appreciated him sharing with us.

Well, I’m off for the night. My mom is only here for a few more days and I hope to enjoy some “girl” time with her before she goes (Percocet shouldn’t impair his ability to watch all three kids while she and I go to the movies, should it?) and I’ll update again after she leaves.

Hope you all have a fabulous weekend!
Love, Kristie