Ten for Ten

Once upon a time, in a land far, far away .... (well, ok, central Georgia) there lived a fair princess with her family.

She was pretty stinking cute.


A few weeks after this photo was taken, the princess woke up one morning, and she had cancer.

That pretty much sucked.


What followed for this young girl and her family was two+plus years of chemotherapy treatments, all of which have been chronicled on this site. Here is a brief summarization of a few of the numbers of her treatment, as taken from the journal entry written about her off-treatment party:

"A few other fun things we did: I filled a jar with M&Ms to represent the number of chemo pills Kendrie took during treatment, then we let everyone take a guess and gave the jar to the person who guessed closest: The winner: (no cheating involved, I swear) my nephew Dalton …. the actual number of pills: 2121.

We also posted a few questions to see who might know the answers (it was funny to me that the other ALL mom at the party said to me, “You know, those questions were pretty easy” --- for her, I’m sure they were, ha!)

1. Number of ambulance rides Kendrie has taken: Two.

2. Number of days she has been inpatient during treatment: Twenty-five.

3. Number of times she has been stuck in the chest, arm, or leg, for flu shots, peg shots, arac shots, blood draws, or chemo: 115.

4. Number of blood transfusions she has received during treatment: Eight.

5. Her preventative antibiotic, Bactrim, she takes in a liquid form. How much has she taken over the past twenty-six months? Three and a half gallons."


Why am I telling you all this today? Two reasons ...... One, did you know September 12th is Childhood Cancer Awareness Day, and that September is Childhood Cancer Awareness Month? No? You didn't? Yeah, sadly, most people don't.

Here are a few facts, taken from the internet,which will hopefully help enlighten you:

Following is some information on childhood cancer in the US:

1. In the Citizen's Briefing book presented to President Obama upon his inauguration, childhood cancer was voted by the American people as the #5 Health Care issue. See Page 16 http://www.whitehouse.gov/assets/documents/Citizens_Briefing_Book_Final

2. Cancer is the #1 cause of death by disease for children, killing more than asthma, diabetes, pediatric AIDS, congenital anomoalies, and cystic fibrosis combined.

3. 46 children are diagnosed with cancer every day in the US.

4. Each year, 3000 children die of cancer in the US. 1 in 5 Children with cancer will die.

5. Every year, 35-40,000 children are in treatment for cancer.

6. September is National Childhood Cancer Awareness Month. Most people have never heard of this.

7. Less than 3% of all cancer research money goes to childhood cancer.

The one I love (which of course in this case, clearly means HATE) is that one in five children diagnosed with cancer will die. That's 20%. While I'm so thankful that number is much lower than it used to be, it is still unacceptably high.

Twenty percent.

Think about your child's class at school. I'm guessing around 20 kids, right? Now imagine the principal told you four of those children, picked at random, would be dead by the end of the school year, just for showing up to class.

Would you send your kid to school?

Think about your child's football, or baseball, or soccer team. Ten or fifteen kids, right? Imagine three of them will be killed on the court or on the field this fall. Would you let your child play?

I'm always amazed (and dumbfounded, and really pissed off, if you want the truth of it) when I hear someone say, "I'm so lucky .... I've been blessed with (insert number here) healthy children and I count my blessings every day."

Guess what? I was blessed with three healthy kids, too.

Until one of them woke up one morning with cancer.

Don't think it can't happen to you.

It can.

It does every freaking day for forty-six families in this country alone.

And reason #2 I'm telling you all this?

Because the beautiful princess we talked about in the beginning of this story???

She turned TEN yesterday.



Thanks to advances in pediatric cancer treatment, and a whole lotta LUCK, she wasn't one in five.

I mention luck to put something else in perspective ..... the 20% of kids that DON'T beat cancer???? Yeah, guess what ---- their parents loved them, too, just like I love Kendrie, just like you love your kids. Their parents followed doctor directions, and had faith, and said prayers, and did everything they were supposed to do, too. Sometimes, whether people want to believe it or not, cancer beats us. Not because we didn't wish it hard enough, or fight hard enough, or pray hard enough, or believe hard enough ............ but because the luck wasn't there. Nothing more.

Geez, that's freaking depressing.

While there's nothing we can do about luck, there is something we can do to help ensure it isn't a big factor anymore ----

Donate to childhood cancer research.

CHILDHOOD cancer research.

The best organization I know for this is CURE Childhood Cancer. I know the director of this foundation personally ..... her son is a pediatric cancer survivor. They are doing their best to help fund research for PEDIATRIC cancers, something the American Cancer Society does very little of. (And I'm not typing that to open up a firestorm of research donation statistical mud-slinging .... type any comment regarding that and it will be deleted from this site, I promise you .....)

A few facts about CURE, taken from their website:

"What exactly does CURE fund?

Research into the development of “targeted therapies” – that focus only cancer cells and do not harm surrounding healthy cells. Targeted therapies are critical to ensuring that patients are spared the devastating and often life-threatening “late effects” caused by current conventional therapies

Basic and clinical research

Training of future pediatric oncologists and researchers through the fellowship program at Emory University School of Medicine

Emergency financial assistance for families stricken by childhood cancer

Professional development and continuing education efforts for nurses, family support team members, and others caring for children with cancer

Innovative programs that address the critical and urgent needs of patients and their families, such as meals to inpatient families, outreach at the time of diagnosis, and bereavement support"

So here's what I'm asking you to do....

Please, in honor of Kendrie donate ten for ten.

Ten dollars in celebration of the fact she turned 10 years old yesterday.

I don't advertise on this site .... I've never tried to sell anything. Occasionally I will highlight fundraisers that I think are worthwhile.

Today, I am asking you to donate ten for ten, and to make a difference.

Because every child deserves to cook s'mores at a restaurant for their birthday:


Every child deserves to make a wish for the upcoming year ..... to HAVE an upcoming year ....


Please, go to CURE Childood Cancer and donate, in honor of Kendrie, in awareness of Childhood Cancer Month, and in preparation for the forty-six kids who will be diagnosed TODAY.

Perspective

In the past six days, the following events have occurred:

*I locked myself out of my house.

*The power went out in our rent house and despite the fact it is the ONLY house on the block with no power, and I have tons of painting to do, and have made numerous calls to the power company, it remains cold and lifeless. Sort of like the way my kids’ breakfast pancakes look each morning when it takes them twenty damn minutes to get out of bed despite my repeatedly yelling and threatening encouraging them lovingly to wake up and get moving already.

*The power went out in my personal residence. Also cold and lifeless, but at that point we bagged it and spent the night at my mother’s. Thank goodness we were only without power for about a day and a half.

*My washer went out.

*I started my period (you’re glad I shared that one with you, aren’t you?)

*My dog died.

Needless to say, I was starting to get just a wee bit discouraged about the way this past week was going. And perhaps I sought solace in a box of Russell Stover chocolates (yes, the entire box in one sitting, do you have a problem with that?) and then perhaps I was even more discouraged because even my fat pants no longer fit.

Then, I realized. Not that I had forgotten, by any means. I will never, ever, ever forget. But I remembered specifically what we were doing exactly two years ago this weekend --- celebrating the final days of my daughter’s twenty-six month battle with leukemia. Celebrating the final days of chemo, spinal taps, bone marrow biopsies, shots and pills and port accesses and surgeries and bald heads and nausea and steroids and toxic drugs and mood swings and fatigue.

Two years since she won.

She has not relapsed. Friends have.

She is still with us. Some friends are not.



In light of the incredible blessing the past two years have been, I think I can get over a few temporary modern inconveniences.

And in the even bigger, bigger picture --- if the sweet baby Jesus can be born in a barn and not complain about it, I should be able to hang out in my garage for two hours, on a futon, wrapped in blankets, waiting for the locksmith, without being such a whiner.

See what I mean? It’s all perspective. :)

Late Effects

The purpose of Tuesday’s visit to the AFLAC Cancer Survivor Clinic Workshop, besides giving us an excuse to do a happy dance, because woo-hoo, SURVIVOR CLINIC, BABY! was to get a baseline check of Kendrie and her medical/social/emotional/neuro-psych needs now that she is {almost} two years off treatment. Also, to educate and enlighten us as far as what late term effects are likely or possible and how to watch for them.

Twenty-six months of chemotherapy, while directly responsible for saving my daughter’s life, also can, unfortunately, bring with it a host of potential problems. Learning problems, gross motor skill deficit, fine motor skill deficit, etc. Most of these problems occur, if they’re going to occur, either during treatment, or in the first two years off treatment. That is the window of time after which, if these problems haven’t already popped up, chances are good that they won’t. Hence the reason our clinic wants children to wait two years before attending their first Survivor Clinic appointment. We squeaked Kendrie’s in a little early since we are preparing for our move, but still, we’re pretty darn close to two years, which makes me smile just thinking about it. Especially if you compare this week to where we were this week four years ago:


Diagnosis and beginning of treatment, Oct, 2003.

We are fortunate, as it appears Kendrie has, so far, dodged the bullet(s) for complications and late term effects. One of the chemo drugs she took can cause heart problems, but both the EKG and echocardiogram from Tuesday were normal. She doesn’t have recurrent foot drop, or joint or bone problems from the steroids. Her growth does not appear stunted, nor does her weight seem to be an issue. Her blood counts were fine (although she was MAD AT ME for forgetting her emla cream and had to endure not one arm stick, but TWO, BOTH OF WHICH REALLY HURT HOW COULD YOU HAVE FORGOTTEN MY MAGIC CREAM?!?!?!?!?!) and did you know Scottish Rite no longer keeps freeze-y spray on hand so all you parents out there, when you go to Survivor’s Clinic, don’t forget the emla for pete’s sake, or your child will STILL be harping on it three days later, is all I'm saying.

There are other potential problems we will need to watch for later in life --- periods of time where learning problems might crop up (making the switch from elementary to middle school, or from middle to high school, for example) problems to watch for when she goes through the hormonal changes of puberty, and also, she will need to be watched by a cardiologist when/if she ever becomes pregnant. Her teeth and bones might be softer than average, and, she's at greater risk for secondary cancers for the rest of her life.

But overall, it was a very encouraging, positive visit. Kendrie is not having any of the common issues that crop up for kids who have received long-term chemo (kids with ALL leukemia). She also received different, less-intense kinds of chemo than say, brain tumor kids, plus no radiation, so in all likelihood, we dodged those potential problems, as well. She is physically active, and is doing well in school.

I left the clinic feeling very blessed, very fortunate, very privileged. Because NOTHING separates us from those kids who have these types of problems than pure, dumb luck.

Then, we arrived home, and before I realized what was happening, before I could even prepare myself for the shock of what was to come, she appeared to have fallen victim to a side effect so insidious, so sneaky, that they didn’t even mention it as a possible problem. I was so busy celebrating our clinic appointment that I didn't even see it coming. Quite frankly, it’s so dire, I’m not sure how we’ll cope. It seems that one horrifying late term effect of chemo is that my tomboy, my so not a girly-girl, my “rough and tumble, I’d rather skateboard than play house, I’ll wear blue jeans and t-shirts but not dresses, and let’s chase frogs and bugs all day long” daughter --- has been reduced ------ to {gulp!} ---- playing with DOLLS:



Oh, the horror.

I was stunned.

Then she told me she was only feeding Brayden’s Baby Alive doll to see if it would poop.

Ahhhhhh, *that’s* my girl!

Why It Still Stinks. And How You Can Help. Even Just A Little.

I am always so happy when I see a comment from someone on this site, or on Kendrie’s Caringbridge site, about how the stories and photos of her, a pediatric cancer survivor; growing, thriving, blooming, and about how she is inspiring to others. I am more than happy and proud to hold her up as a picture of hope to other families who are still in the fray of cancer treatment, or perhaps to people who haven’t been affected personally, but who still care about the cause of pediatric cancer research and treatments. I am still working, albeit behind the scenes, and very slowly, on the book project that Julianna Banana’s dad and I mentioned last year, in the hopes I can continue to help newly-diagnosed families.

Our family was blessed that Kendrie was diagnosed in the period she was, a period where thanks to research and clinical drug trials, children receive better treatments, more successful treatments. Survival statistics for leukemia have improved dramatically in the last thirty or forty years, and for that we should all be thankful. But it’s still not enough.

September is Childhood Cancer Awareness Month. Many people don’t know that. Many people also don’t know that funding for pediatric cancer research has been cut recently, and only one new chemotherapy drug has been approved for pediatric cancer treatment in the last twenty years. Think about where the AIDS crisis was twenty years ago and imagine if they hadn’t made the wonderful progress they’ve made. Think about breast cancer research and the fabulous strides they’ve made in the past twenty years. Pediatric cancer research is equally as important --- it’s just that these little victims aren’t able to make as much noise about it.

One of our friends from the Lighthouse Family Retreat died this week. A beautiful young girl named Summer Curry, from just an hour down the road. She and her twin brother Hunter, her marrow donor (that’s right, just because you have a transplant doesn’t mean you’re cured -- did you know that?) were both baptized in the ocean during our week at the Lighthouse this summer. It was a touching, emotional, poignant moment for all of us who were fortunate enough to be included, and my heart is breaking for this family today. Summer should have been gearing up for her first year of middle school, and making plans to attend the Jonas Brothers concert at the fair next month. Not this. Never this.

A boy named Mitchell from my hometown is in the hospital right now, with the same type of leukemia Kendrie has. He attends the school where my children will go when we move home; he plays baseball on the same team as my nephew. My sister and my nephew adore him and his family; he is funny, and smart, and athletic. They are kind, strong, amazing people. Their unshakable faith, at this time of crisis, is nothing short of inspirational and amazing. I talked to his mom once, at a 4th of July celebration, and we discussed having kids with cancer. The worries, the fears, the bittersweet victories. I doubt she remembers me, but she was lovely. I liked her a lot. Mitch will most likely not be coming home from the hospital. We talk a lot about miracles, but at this point, it will take a true miracle for an earthly healing for him. His family knows that, according to the website. Does that make it ok? Or easier to face what is happening to this child? No, of course not. Mitchell should be busy playing fall ball, and avoiding girl cooties, and dealing with the hazards of fourth-grade homework. Not this. Never this.

I don’t know what the answer is. What do we have to do, as a society, to ensure children no longer suffer and die from cancer? There are so many wonderful organizations out there, all doing good work, important work. Sometimes I feel impotent, like how can I help? I’m just one little person, what can I do to make a difference? I guess the important thing is if enough of us feel that way, and do something about it, things might change. Or perhaps *keep* changing is a better way of putting it --- keep improving. ALL pediatric cancers should have 100% success rates; that is the only acceptable statistic in my mind. And we shouldn’t have to lose the Summers and the Mitchells of the world to galvanize us into action.

If you’re willing, you can help. Chili’s has a promotion with St. Jude Children’s Research Hospital, as they have done for several years, and will be donating 100 percent of their profits on Monday, Sept 24th, to the hospital. I mean, you have to eat, right? So why not eat at Chili’s tomorrow and know you’ve done a small part to help fight the fight. If you don’t have a Chili’s near you, you can go online and create a pepper, then donate. Our family is unable to attend tomorrow night (I’m telling you, seriously, the soccer quagmire has begun) but Blaine and I will be going for lunch tomorrow. And I’ll make a pepper in memory of Summer, and in honor of Mitchell. And wish that I could do more --- try, always, to think of a way that I could do more.

Thank God for Barking Dogs

I’ve mentioned our geriatric dog Lager to all of you. He’s a very sweet, very gentle, very grumpy old dog. Actually, he’s not grumpy as much as he is spoiled. He wants to be inside the house at all times, whether we are home or not. If we’re going to be gone all day, and he has to stay outside, he gets downright cranky. If he goes outside for any reason while we are home …. a drink of water, nature call, anything at all, he is at the back door, barking to be let back in, within seconds. And he will bark --- Until. You. Let. Him. In. Period. He doesn’t stop barking --- ever --- until you let him back in.

Most of the time we resign ourselves to standing at the back door while he does his business, or gets his drink, because if you let him out, then try to sit down, by the time your bum hits the sofa cushion, he’s already at the door barking. It’s just easier to wait on him, and let him in, and avoid the barking. (No, I have no idea why he’s spoiled, do you?) Because again, in case I haven’t made it clear --- The. Barking. Will. Not. Stop. He might be sixteen years old, deaf and arthritic, but he’s got the lung power of an young Iditarod champion.

The only time it really bugs me is when I’m trying to sleep, as the master bedroom is in the rear of the house, so his barking wakes me up. Which annoys me. Greatly.

{abrupt subject change}

Last year, when the kids accidentally broke our ancient video camera, we got a new one. But, without the old camera, we had no way to play the old 8mm tapes. So, I bought a DVD burner and made copies of all our old home movies. We have close to one hundred hours of DVD tapes, starting with shortly before Brayden was born in 1997 and going until the present. They’ve provided us with great many hours of entertainment, and there are still many tapes we haven’t watched yet. Each one is like opening a gift, since we’re never sure exactly what is on each DVD. (Are anyone else’s kids as narcissistic as mine? They could watch themselves all day, I swear!)

Yesterday, I heard the kids talking and laughing while they watched home movies. I heard one of them say, “Look! A birthday party!” and I stuck my head in the room to see which tape they were on. It was a tape of Kendrie’s 4th birthday party. We had it at a local pizza and games place called DJ’s, and the kids were running and jumping and having a ball. They were laughing on the tape, and laughing in the room, watching themselves on the tape, and I was smiling at all of it. Then, suddenly, the birthday party was over. The next image on the tape popped up and it was like somebody had punched me in the stomach.

Kendrie, in a hospital bed, recently diagnosed with leukemia.

We were in Atlanta, and it was Blaine taking the video of me and Kendrie. My mom had flown in to stay with Brayden and Kellen so it was just the three of us at Children’s Hospital. In the video, Kendrie was laying in bed, talking quietly, and looked so very small. I was taking photographs of her, and kept encouraging her to smile. I distinctly remember taking those photos. I hadn’t yet been told the statistics about childhood leukemia --- that the chance for a successful treatment and cure is actually fairly decent. (Not great, since we all know anything less than 100 percent isn’t good enough, but still decent.) But I didn’t know that yet. I remember taking those snapshots of her in the hospital bed, and thinking they would be the last pictures I ever got of her, and feeling like I could vomit at any minute.

Yesterday, watching that tape, it all came racing back at me, and I felt just as nauseous. Like someone was squeezing my heart through my chest.

The next scene was the three of us at the koi pond at the hospital. Blaine picked Kendrie up from the wagon, and tried to get her to throw a coin in the fountain. Her arm had IV’s coming out of it, and she was hooked up to the IV machine we were dragging along behind us, so she couldn’t get the penny in the water. On the tape, Blaine says, “Here, I’ll throw the next one, but you get to make the wish.” I remember thinking at the time, “Let me have the wish -- me! I wish for this all to be a mistake -- I wish for my daughter back, healthy, the way things were a few weeks ago!”

The tape played on, and the images were all disturbing to me. I sat there,watching it, feeling sick and nauseous ... yet those tapes cracked all three of the kids up. “Look, Kendrie, how chubby you were!” said Kellen, while Kendrie, sitting beside me on the floor, held her cheeks and was laughing so hard she was falling over. “Why were my cheeks so fat???” she asked, giggling the entire time.

A few scenes later, she walked across the screen -- totally bloated from the steroids, her hair nothing more than the wispy strands that screamed “CANCER PATIENT”, wearing a princess outfit whose neckline showed the scar from her port, complete with beaded necklace and high heels. “AAAAAAAaaaaaaaaaaggggggggghhhhhhhhhhhh!!!” she shrieked hysterically when she saw herself on tape dressed like that, “WHY WAS I WEARING THAT??? IT’S A GIRLS OUTFIT!!!” while all three kids pretty much wet their pants, laughing so hard.

She wasn’t bothered by the bald head, or the puffy face … she thought those tapes were funny. She was able to look back on that and laugh, and I’m so very, very grateful. I know she remembers parts of her treatment because she’ll bring it up from time to time. But she has the ability to look at it with a sense of humor. We’re lucky that her treatment went well, and we have the luxury of looking at those things as funny. Not every family gets that lucky.

As for me, I watched myself on the screen, and saw the dark circles under my eyes, and the pinched, worried look on my face. I remember, viscerally, how those first few weeks in the hospital felt. Yesterday, the memory of that despair and terror was just under the surface, and it surprised me. I felt just as sick, remembering, as I did at the time. Although I never forget how blessed we are, and certainly don’t want to push the entire cancer journey under the rug, I must admit, I don’t think I want to watch those videos again anytime soon. With Kendrie’s treatment lasting twenty-six months, we obviously have a lot of tapes where she is bald and on treatment. But that first tape, the tape of her at the hospital, diagnosed, going from laughing, happy child to frightened, withdrawn, cancer patient …. That hurt. I don’t ever want to be that terrified again, and it's my most fervent prayer that she never faces that again.

{another abrupt subject change}

I dreamed last night. In my dream, me and Brayden and Kendrie were walking along a path when we came to a railroad crossing. The girls were both much younger, about the ages they were in that video. As we stood there, the bells started ringing and the guard rails started coming down, to signal that a train was coming. Suddenly in my dream, I was on one side of the tracks and Kendrie and Brayden were on the other side. They were both crying that they wanted me, and trying to cross over the tracks to get to me. My legs wouldn’t work (do your legs EVER work in dreams like this?) and I was screaming at them to stay on their side of their track, and to let the train pass by. Brayden listened to me and took several steps back, but Kendrie stepped up on the track, arms outstretched to me. I would scream at her to step back, and she would for a step or two, but then she would cry that she was scared, and needed me, and she’d step back on the track towards me, with the train getting closer and closer, second by second.

I was hysterical-panicked in my dream, because I couldn’t reach her, and couldn’t protect her, and couldn’t get her to listen to me. The train was bearing down and she wouldn’t step back away from the tracks, no matter how much I screamed. She just kept crying that she was frightened, and stepping up on the tracks with her arms reaching towards me.

It was one of the worst freaking dreams I’ve ever had.

It certainly doesn’t take a Harvard-trained dream analyst to figure out where it came from. The train was cancer (or I suppose menace in any form) and I was powerless to stop it. I could see that she was in danger, and I couldn’t help her or protect her. It was the most awful feeling in the world.

At that exact moment, my dog started barking, and woke me.

I was never so happy to hear that dog bark in my entire life. As far as I'm concerned, he never has to go outside again.

It Would Be A Shame

(Anonymous -- The song is by a group called the F 50’s. If you browse iTunes, you’ll find some oldies that they’ve remixed into dance/exercise tunes, including a really fun version of Itsy Bitsy Teeny Weenie Yellow Polka Dot Bikini that I just love. The rest of you Anonymous {Anonymi??} - thanks for putting your names in your comments, I appreciate getting a chance to know who's who.)

I drove Kendrie to Atlanta today for her regularly scheduled three-month follow up visit at the oncology clinic. Because she is doing so well, because she is having no complications, or late-term side effects to date (knock knock, who's there? Oh, me! With the wood!) these visits are not stressful for me. They’re actually sort of fun, since we occasionally run into other cancer families we know, and get to see staff and employees (Hi, Kati!) that we miss from our regular-days.

And, every three months, it’s a great reminder to me (I know, STILL with the reminders, when will I shut up already??) about how blessed and lucky and fortunate we are, with how great Kendrie handled her treatment. Although it’s probably silly, I’m like a new parent at a well-baby exam, eager to show off my beautiful daughter and how wonderfully she is doing.

Today, waiting in the exam room for the doctor to come in, I looked over at Kendrie with pride, noting her growth and energy and vigor. Such a far, far cry from the days I had to push her in a stroller because she didn’t have the strength to walk from the parking lot -- bald, nauseous, fatigued. I felt so proud and happy today, and let my eyes drink in a good long look at the beauty and miracle that is my daughter.

And I noticed a few things.

Like the fact she seriously needs a haircut.

And what I thought was a rosy complexion is actually a sunburn from where I forgot to put sunscreen on her face at last weekend’s soccer game.

And how desperately her nails need to be clipped. And how despite taking a bath last night, there was dirt and grime under them. Eww.

And the huge ugly bruise on the back of her thigh that makes it look as though I’ve been beating her with a tire iron, which is in fact from falling off her brother’s bike ramp and landing on a scooter. {I have witnesses.}

And how the knees of her cargo pants were both stained, and one knee actually had a hole in it.

And how the toe of one of her tennis shoes has rubbed almost completely through, so I expect to see the toe of her sock (most likely a sock with a hole in the bottom, if I checked) will pop through any day now.

And I thought to myself, “Great. We got her through leukemia treatment and made it to the other side. It would be a shame now to lose her to DHS for neglect.”

And I said, “Kendrie, why are you wearing those old tennis shoes? The toes are practically worn out.”

She ignored me, so I tried again, “Honey, why didn’t you wear your school shoes? Or at least some that aren’t so worn out?”

And she shrugged, never taking her eyes off the television, and grunted, “Dunno”

So I figure if it’s not neglect, they’ll take her away in an attempt to improve her social skills. Although to be fair, she was mesmerized with the Timon and Pumba episode that the clinic had playing. It’s hard to carry on a conversation with your boring mother, when those two start their rascally shenanigans.

THE ONE WHERE I GET ALL REFLECTIVE AND SAPPY ON YOU

Fall has always been my favorite time of year. Football, leaves changing colors, cool, crisp air, jeans and sweatshirts, pumpkin patches, the whole she-bang. My very most favorite time. I pink puffy heart fall. If I could find a place to live that was fall year-round, I would move there in a nano-second.

Since 2003, however, fall has been bittersweet for me. On this day, three years ago, Kendrie was in the Pediatric Intensive Care Unit at our local Children’s Hospital while the doctors tried to figure out why she was so anemic and not responding to blood transfusions. I was in total denial that anything could be seriously wrong, and hoping she would get out of the hospital in time to visit the State Fair, and vacation in Tennessee with our friends the Deatons. Instead, this Friday, the 13th, will be the 3-year anniversary of the day she was diagnosed with leukemia. The day I learned you can be punched in the stomach and feel your heart being ripped out of your chest, even if no one actually touches you.

We were taken by ambulance to the Children’s Hospital in Atlanta where she underwent more testing, and then her chemotherapy regimen was started. As soon as my mom could get a flight to Georgia to watch Kellen and Brayden, Blaine came to Atlanta to be with us. We rented a room at a hotel a few blocks away from the hospital and he and I took turns sleeping at the hospital each night. Whoever’s turn it was to go to the hotel and take a shower would walk back and forth, and I remember how cool and crisp the air was. Fall had arrived. I remember putting Kendrie in a wagon at the hospital and pulling her around the koi pond, pointing out the leaves that had changed colors, and watching the late-afternoon sunlight shine down on her blonde hair. Her blonde hair. "Oh my God she’ll be bald soon", I remember thinking. I remember feeling that it was impossible for the weather to be this glorious, when I was spinning out of control and cracking up inside. This was fall. We were supposed to be visiting pumpkin patches, and watching college football games on the television. Instead, we’d been immersed in this surreal world of childhood cancer. How the hell did THAT happen?







Three years later, things are good. Things are great. Kendrie’s monthly bloodwork, done earlier this week, showed perfect numbers. She’s playing soccer, loving school, and we had to have her bangs cut for the first time in ages. But still, when I feel that early-morning chill in the air, or see the Halloween decorations in the neighborhood, or hear the local high school marching band on the field next to Kendrie’s soccer team, practicing for their Friday night half-time performance, I can’t help but reflect back on our very own Fall of 2003. I remember the ambivalence; the world was beautiful, the world was falling apart. I am so grateful to be done with that world, and so terrified that we could be thrust back in it at any time.

It’s a fine line to walk, being grateful for the life lessons, yet wishing we had never experienced them. And while I know we should look forward, and we do, it’s hard not to look back. It seems insulting to the courage she showed, and the struggle we faced as a family, NOT to look back. I’m so proud to look back and see how far we’ve all come. I hate looking back and remembering any of it.

{Warning: This is where I start to ramble and really go off on a crazy-lady tangent and just basically blah blah blah to hear myself talking more blah blah …. } How can I complain about what she went though, when there are so many families not as fortunate? How can I gripe for one second that fall has been contaminated, when she is here with me? It’s so bizarre, this time of remembering. It’s exhausting to go through life looking over your shoulder, scared about what *might* happen. It’s impossible to go through life with a constant smile on your face and Pollyanna attitude, knowing your earlier naiveté is gone, and missing it, but knowing that you look like an idiot now if you pretend nothing ever happened. I don’t want to dwell, or feel bitter. I don’t want to act as if it didn’t exist. When will my own personal timeline no longer be divided by “Before Kendrie got sick” and “After Kendrie got sick” ….. When will I quit being a crazy person? When will the simple act of a change of seasons no longer hold such significance? When will fall no longer feel tainted?

On the one-year anniversary of Kendrie’s diagnosis, I pretty much had a nervous breakdown in the parking lot of my hairdresser’s salon. Freak. (me, not her.) The second year anniversary was much less climactic. This year, it’s not difficult, but I find myself remembering. And hating it. And being grateful, all at the same time.

We are spending this anniversary of Kendrie’s diagnosis away for the weekend, relaxing as a family. I feel the need to pull my children close to me and enjoy fall the way it is supposed to be enjoyed. Nature walks. Leaves changing. Cool, crisp air. Our first fall since 2003 with no chemotherapy, no shock of diagnosis, no steroid tantrums, no spinal taps. No bald heads, no pain or nausea. No need to take Zofran on vacation. Just the five of us. No leukemia allowed. Just us.

We’re gearing up for Blaine’s next step. I’ll write more about that later. For now, I am readying myself. Spending the weekend with my kids. Enjoying us. Enjoying fall.

FULL CIRCLE

Three years ago, in the fall of 2003, Brayden was playing her first season of fall soccer. She was so cute, only six years old, and Blaine and I loved going to her games. She was never very aggressive (or even very talented!) but she had fun running around, getting a little fresh air and exercise, and most importantly, getting a juice box and a snack at the end of the game, and really, what else do you need in life?

Also in the fall of 2003, Kendrie started complaining that her arms and legs hurt. I remember thinking she was being lazy, or manipulative. I remember getting frustrated at her requests to be carried everywhere, or crying in her car seat that her legs were continuously falling asleep. I remember wishing that the virus her pediatrician had diagnosed her with would hurry up and run its course already so she’d quit whining. I remember saying to her, “There is nothing wrong with your legs! You are four years old now and you are too big and heavy for me to carry you all the time!” (insert big, exasperated sigh)

I clearly remember, in the fall of 2003, taking her to one of Brayden’s soccer games and her asking to be carried from the car to the field. Blaine and Kellen didn’t go with us that day, and I remember being annoyed because I had to carry the chairs and the water bottles and my keys and my camera, also, and schlepping her from the parking lot to the playing field was the LAST thing I wanted to do! I remember there was a huge dirt mound from a construction project next to the field, where Kellen and Kendrie always wanted to play during the games. Being ages just-turned-four and five, they didn’t have the attention span to patiently sit through a one-hour game. I didn't care if they got dirty, but if Brayden was playing soccer over *here* and the two of them were playing King of the Hill over *there* I couldn’t concentrate on and enjoy the game as much.

That particular Saturday, Kendrie never got out of her chair. In fact, she fell asleep at the game. I remember feeling partly grateful, because if she was napping, it would be a whole lot easier for me to enjoy Brayden's game. I remember feeling a little ashamed of my selfishness; that I was *glad* she was tired enough for a nap. And I remember thinking it was odd she would take a nap anyway … she quit napping at 18 months. But hey, I had an adorable 1st grader playing soccer and lots of picture-taking to be done, so why look a gift horse in the mouth?

All parents of kids with cancer look back after the fact to the days and weeks before diagnosis, when the warning signs, that seemed so random at the time, come into focus and we have an “AHA!” moment where it all suddenly makes sense. We wonder if we could have done anything to prevent it (NO); if anything we did or didn’t do caused it (NO AT LEAST I DON’T THINK SO); if we should have somehow realized what was happening more quickly, or if knowing would have changed anything (AGAIN, NO); and we berate ourselves for not immediately seeing what was unfolding before our eyes (HEY AT SOME POINT YOU’VE GOT TO CUT YOURSELF SOME SLACK).

That day, my warning sign that something was wrong was a normally exuberant four-year old, who would rather sleep in a chair at her older sister’s soccer game than play in the dirt and pester me for grape soda and hot dogs. I put an umbrella over her so her face wouldn’t get sunburned and turned my attention back to the game. But the image of her in that chair, curled up and sleeping, with my red umbrella opened up over her, will stay burned in my mind forever. I no longer feel guilty because I didn’t see it for what it was --- a little girl whose bone marrow was filling with leukemia cells and whose normal cell production had slowed so drastically she would be critically anemic within a few days. I don’t beat myself up about it anymore, but I won’t forget it.

Yesterday, my mental storage cache had to make room for NEW images, images which make me much happier, and which fill me with joy and happiness and pride, instead of guilt and stress. Yesterday, instead of being the sick little girl asleep in the chair, Kendrie was the kid ON THE FIELD!! Playing on the same field, in the same league, in the same uniform. *SHE* got the juice box and snack at the end of the game ….. and yes, the other two still preferred wandering off to play in the dirt. But as I watched her run around (ps. running in the grass, laughing with her team-mates, enjoying the fresh air and exercise ---- coughing and hacking up A LUNG!!! … we are SO off to the pediatrician this week to see if she has allergies!) I couldn’t help but think about the fact she has come full circle. She is healthy; happy; strong.

And my fervent prayer is that she is never the kid, sleeping in the chair with an umbrella over her face again.











Because check out the difference three years makes --- Kendrie during induction, puffy, aching, fatigued, bloated from steroids, ravenous:



And check out the svelte Kendrie of today:



Because I have no idea if the waves will stay, and suspect they will be gone with the first hair cut, but I plan to enjoy them as long as I can:




And because sometimes, despite two and a half years of chemo, you run so fast you are a blur, and even *those* photos are beautiful to your mother:

OK. IT’S OFFICIAL. I AM CERTIFIABLE.

Kendrie -- 181 Days OT

Blaine -- Two and a half weeks out from radiation; finally not looking like a burn victim, but still not growing any hair on that side of his head or face. He said the good news is that it’s cut way down on his shaving time in the mornings.

First of all, thanks to all of you who wrote in the guestbook (have I mentioned lately how much I appreciate you guys for not only visiting our site, but leaving us messages? I’ll admit it, I’m an attention-junkie, and for a post to elicit that many responses ….. I LOVE that!) telling me that the “drowned rat” look was actually working for me, because due to whatever storm front moved through here, I did it again last night. Only the second night it was even **more** special because in addition to the rain, we had gale-force winds blowing … causing more than one parent’s (but thankfully not mine) umbrella to flip inside out in the stands. I’m telling you, it’s a miracle someone wasn’t blinded. (Yes, I made sure I had an umbrella in the van before leaving home this time.)

But, since it was the final game of the season, I’m not going to complain about the weather, although I do have to admit that while the first time was funny and exhilarating, the second time it was just wet. And after driving myself, Brayden, and Kellen home, soaking, dripping wet (the kids tried to dry off before sitting down, but all I could offer them were some Sonic napkins in the glove-box and a maxi-pad that I found in my purse) and then parking the van in the garage all night, where it was at least 90 degrees with 3000 percent humidity, the entire van reeks of mold and mildew. It’s like driving around in a soured milk carton. Ah, detailing it last month was certainly money well spent.

Anyway, I’m way off on a tangent now. Back to tonight’s topic: me, being insane.

Check out the number above, regarding Kendrie’s time off-treatment. One hundred eighty one days. That’s basically, six months. Six MONTHS, people, (technically, six months tomorrow) since we “formally” ended her chemo journey. Six months of eating ice cream before bed; (maybe that’s the *real* reason I still look pregnant?) six months of not planning our vacations around clinic visits; six months of living a relatively normal life. Six months of knowing we can give her Tylenol if she runs a fever without having to call her oncologist; six months of letting her catch frogs and tadpoles; six months of thankfulness for her continued good health.

And believe me, we KNOW that those are all good things, and we are grateful for each and every one. Especially the last one.

So why is it, when I took her to her follow-up visit at the clinic in Atlanta last Friday, I found myself feeling wistful? Dare I say, feeling nostalgic about the “good ole’ days”?

(It’s because I am insane.)

Please don’t get me wrong, I have no wish for her to EVER be sick again, or to return to the times of illness, stress, chemo side effects, worry and fear. NO, all too happy to be done with that part of it, thank you very much.

But the COMFORT of it all, I didn’t realize I had missed it, until we visited it again.

(Because I am insane.)

The comfort of walking into the Aflac Cancer Center at Scottish Rite and knowing we “belonged”. All those other bald little kids watching Toy Story in the waiting room while they waited to be called back for their appointments? Been there, and after awhile, felt comfortable doing that. Being greeted by name by Glitter Princess Kati at the check in desk, and running into two families that we had met at Camp Sunshine; good grief, do I actually miss the SOCIAL aspects of Kendrie’s cancer-life? Well, yes, I do.

I miss the friends we made while we were on treatment, and that we were able to see and visit when our paths crossed at the clinic. Catie, Keegan, Brandon, Madie, Jake, Brady, Mary Grace, Chandler, Gwen, CampJack, Jacob M, Joshua, and others; so many wonderful Atlanta families, and I miss them all.

Flashes of Hope had set up a portrait session in the clinic the day we were there and offered to take photos of Kendrie and me. I was excited for the chance (you should visit their website and see the quality work they do!) but a little flustered that I didn’t know about it ahead of time. I definitely would have dressed Kendrie in something nicer than her “Baseball is Life” t-shirt and cargo shorts. And maybe, if I’d gotten really ambitious, brushed her hair before leaving the house?? Dare I dream so large? They had a make up and hair artist there to primp everyone before each session. Perhaps not aware that Kendrie’s photo is in the dictionary under the word “tomboy” she asked if Kendrie would like a little lip gloss, or maybe a clip or bow in her hair? Kendrie just looked at her, I kid you not, with a total “What is this madness of which you speak?” horrified expression on her face. It was actually very, very funny.

Anyway, back to the fact I wasn’t aware they would be there ---- then I thought, how would I have known? We haven’t been to the clinic since April …. Do I expect them to call me every time they have something special like that planned?

(Yes, I do. Because I am insane. And high-maintenance.)

When we pulled into the parking garage at the hospital that morning, I noticed a new parking-pass type system set up, a sort of credit card for people who park there often. I felt a little indignant, like, when did they install this? How come no-one told me? How dare they make changes while I am away???

I’m like the pathetic girl who graduates from high school, only to return for a visit at a later time and feel surprised that life has gone on in my absence.

(That or I’m just insane.)

And it’s only going to get worse … Kendrie’s doctor has extended her follow-up visits from every two months to every three months. So we won’t even go back until September. She’ll continue to get monthly blood counts at our local lab, but still, after going to the Atlanta clinic two or three times a week at the beginning, and never less than monthly, no matter when, it often felt like our home away from home --- three months between visits will seem like a lifetime.

(To an insane person.)

And logically, in my head, I know that’s a good thing. It’s a GREAT thing! She’ll miss less days of school, and I won’t have to make the drive to Atlanta as often. Every day moves us farther and farther away from that dark period, and closer and closer to a time when Kendrie won’t have to go back at all. At this visit, her oncologist told us we could discontinue not only the two allergy pills she’s been taking every night for the last eighteen months, but also the nasty-tasting Bactrim antibiotic she’s been on this whole time. Did you hear that? NO MORE MEDS!!! AT ALL!!! We even let her take off the medic-alert bracelet she’s worn for over two years. (But naturally I saved it because again, you know me with the nostalgia!) Those are all great milestones!!! So why did it feel so bittersweet to pack away that bracelet?

(Still insane.)

Most of it, I’m more than happy, nay, THRILLED for her to be able to let go; steroids, port accesses, shots, chemo, steroids, nausea, fatigue, hair loss, steroids, worry over counts, lifestyle restrictions, steroids, did I mention steroids? And for the most part, ever since the bulk of her treatment ended in December, we’ve gone on and not looked back. I’ve never missed the “safety net” of chemo like I hear about other parents doing when their child ends treatment. I’ve never panicked that she’s going to relapse because we’re not pumping her full of toxins to keep the cancer at bay. Until Friday at the clinic, I had never really looked back.
**********************************************
Well, I’ve been staring at this screen for twenty minutes, trying to figure out some way to wrap up this journal entry and make it into something comprehensible. I appear to be failing miserably. I’m not even sure what it was I was trying to say here ….. and whatever it was, I’m saying it poorly.

(Probably because I’m insane.)

But I can't help but wonder, if you polled other cancer parents whose kids are off treatment to see how they feel, if perhaps I’d also be perfectly normal. In an insane world, which pediatric cancer certainly is. Maybe that’s why a small part of me, misses a small part of it.

PS. Wish me luck tomorrow. The kids and I are flying to Oklahoma City to visit the grandparents, aunt, uncle and cousins for a vacation. Me, flying with all three kids by myself …. Getting up at 5am in order to catch our flight, the carry-on bags full of stuffed animals and puzzle books and Chips Ahoy, and my purse full of socks for all of us for getting through the Atlanta airport; wrangling the suitcases by myself through the airport because God forbid any of my children offer to help me. We bought tickets at the last minute and none of our seats are together …. Hello, Delta? Please be flexible tomorrow and re-assign us. You just KNOW there’s a journal entry here someplace, and we haven’t even started yet. I think the aspiration of the entire trip is further proof that I’m insane.

THEN I SAW HER FACE ….. NOW I’M A BELIEVER

(aka.. THE JOURNAL ENTRY THAT’S REALLY CHEESY BECAUSE WE HAD TO RE-ENACT THE WHOLE PICTURE THING)

Although I hate to be a person who stereotypes, it’s my opinion that parents can frequently be placed in one of two categories: obnoxious, or normal.

The obnoxious parent is sometimes the parent of a first born or only child (although on occasion, you’ll find parents who are obnoxious about ALL their offspring.) The child is often still fairly young (reality hasn’t come ‘round and smacked the parent in the face yet, at least that’s what I think!) These parents truly believe (erroneously, although they don’t know it) that their child can do no wrong. That no child smarter, prettier, more handsome, or more endearing or charming has ever been born or walked the face of the earth. To put it less tactfully, to the noses of the obnoxious parent, their child’s shit don’t stink.

Surely you know someone like this? Someone, whose baby pulled up, sat up, crawled earlier than anyone else’s baby? (For you see, *that* is the truly obnoxious part. These parents are competitive, secretly think *your* kid is an idiot, and make sure to tell you about every Herculean feat and Socrates moment their kid has … YAWN!) Someone whose toddler is going to completely skip pre-school because they can already read and do complex algebra? Someone whose child can run faster, skip better, jump higher, and in all ways, is more coordinated than your own?

A playground conversation amongst obnoxious mothers might sound something like this:

Mom #1: “Can you believe that when we went to buy Timmy’s t-ball uniform, we had to buy three sizes larger than the other kids because he’s so tall? I guess that’s the reason he’s the best player on the team, because he’s physically superior to everyone else.”

Mom #2: “Well, be glad Timmy’s problem is physical and not due to sheer genius. I don’t know what we’re going to do with our little Johnny. His kindergarten teacher says he’s already too advanced for all the workbooks she has in her classroom, and even his private Latin tutor admits that he’s way beyond the basic level of her lessons. She says he could *teach* the older kids!”

Mom #3: “Oh dear, you know, our little Susie’s problem is both physical AND due to genius. She is so far advanced for her age, and what “should” be her skill level in her violin lessons, that there isn’t a violin on the planet small enough for her dainty little hands. It’s simply a case of the musical brain being too advanced for the beautiful, petite fingers at this point!”

Mom #4: “Well, I have to admit, our problem is financial. Considering James (currently, four years old) will be getting his undergraduate degree in political studies from Harvard, then his medical degree from Yale, and then his second doctorate in global technical relations from MIT, I’m just not sure we can save enough to put him through school! Good thing for total academic scholarships, which I'm positive he'll get!”

{Tinkling, self-satisfied laughter all around}

Then, there are the normal parents. Parents who, although they adore their kids and deep, deep down, think they are also the most beautiful, clever, intelligent, delightful kids on the planet ….. these parents also have enough backbone to face a healthy dose of reality about their little angels.

Like the fact their two year old is obsessed with shoving beans up her nose, or eating play-doh, or that their four year old shows more interest in Dora than in potty training. That their six year old daughter is the biggest whiner on the planet when she doesn’t get her way, or that their eight year old son finds farting hysterical, or that their nine year old daughter is a pack rat who can’t keep her room clean to save her life. You know. Parents like that. Not that I *KNOW* any, or anything.

Kidding, of course. These are the kind of parents I much prefer to hang out with, and the kind with which I feel I have MUCH more in common. Our playground conversations are more along these lines:

Mom #1: “Well, we got an authorized notice from the principal yesterday that if Timmy head-butts one more kid on the playground, they’re going to ban him from recess for life. Can they do that?”

Mom #2: “Don’t feel bad, you know it’s just a stage, like when our Johnny went around stealing everyone’s dessert out of their lunch boxes. He finally stopped, but only after we threatened to take all of his Star War toys to Goodwill.”

Mom #3: “Yeah, well, I’ve got you both beat. Despite being five years old and knowing better, Susie threw such a tantrum in Toys ‘R Us yesterday when I wouldn’t buy her a Cabbage Patch stroller to go with her Cabbage Patch doll that the manager came over and asked us to please vacate the store because her screaming was setting off the Pound Puppies and the entire aisle was howling.”

Mom #4: “Sorry, no sympathy from me. I came home yesterday to discover James had shaved a four-letter word into the cat’s fur.”

See? *Those* are the kind of moms I prefer to hang with. I second guess my parenting skills often enough without “friends” making me feel worse because my kids are (gasp!) normal.

So ---- What is the point of that little tangent, where I try to prove to you that I am a normal parent, and that I recognize my children and their annoying idiosyncrasies? Because for a brief moment, I’m going veer off the path and be an obnoxious one, and I don’t want you thinking that is the way I normally behave!

Announcement, Please --- We just found out that Kendrie was accepted into the gifted program for first grade in her elementary school!!!! Gifted, people, GIFTED!!! The fruit of MY loins, gifted!

She was so excited when she found out, this was her reaction:



(This is the part of the journal entry that is totally cheesy because we had to re-enact it. I got the notice from the school almost two weeks ago. But what with the delivery, and the chaos that followed, I completely forgot to tell you guys, so I’m pretending that its news to us now!)

And here, basically, is the thing. I wouldn’t even say anything, let alone brag like this, under ordinary circumstances. Shoot, telling you pretty much ensures she’ll flunk out the first week of school next fall, and then I’ll have a big ole’ egg on my face, won’t I?

But you see, her circumstances AREN’T ordinary. Between the ages of four and six, she was diagnosed with cancer and underwent two-plus years of chemotherapy to get rid of it, including her entire year of Pre-Kindergarten, and half her Kindergarten year. She missed so many days of school that if it weren’t for her Exceptional Student (Medical) Status, she could have been held back due to the school’s absence policy. Days where she was in Atlanta getting chemo injected in her chest and her back and her legs; days where she took a nap in the Nurses Office, or came home early; even days where she felt too crummy to get out of bed and attend at all.

So to know that despite her challenges, she not only attended school, and passed, but THRIVED ---- it’s so exciting for me that I want to shout the news out to everyone! I’m so proud that I’m considering renting a marquee somewhere, or tattooing my forehead with “Kendrie Rocks!”

I also tell you this because I know there are other cancer parents out there who follow our site. Many of their kids were diagnosed after Kendrie, so are still in the thick of treatment. I want them to see that there are kids who do well, despite the trials all these young patients face. Sure, who does well and who struggles more than their share ….. a lot of it is bold-faced luck and I won’t deny it. But if your child is in still on treatment, or facing challenges, and you need a face to look to for inspiration, well, today I think that face is Kendrie’s …. Frog chaser, scooter rider …. Gifted student.

I might be her mom, and this might sound incredibly corny, but when I see her face, I’m a believer. It is possible.

I love you Kendrie,

Mom

PS. But could you please just knock it off already with the whining, ok sweetie?

PSS. Can you even believe, after me publicly professing my love for Sonic cups and rabbit pellet ice (you people who have never heard of rabbit pellet ice … you have been severely deprived and need to get to a Sonic right now) that I got up tonight to make myself my nightly DDP ….. AND I DIDN’T HAVE A SPARE CUP IN THE HOUSE? OR THE CAR? OR ANYWHERE????

I was searching all over, getting all grumpy and angry and testosterony, and griping to Blaine about how he had thrown out eight cups too many the other night, when I suddenly remembered that my girlfriend Jadine (yes, the one from Pflugerville that I mention all the time) who knew about my Styrofoam cup obsession already and had sent me a care package recently with several dozen cups and lids in it!!!! Jadine, you are a lifesaver! Smooches!

PPSS. Speaking of kids who are struggling right now, two of the boys on my list-serve have relapsed and could probably use a note of encouragement: Cameron has had a long, difficult journey for quite some time and I can't help but believe this brave kid is more than due for a break .... but he just doesn't seem to ever get one. He has relapsed ... again ... please stop by his site and say hello. Also, Tyson finished his treatment for ALL last summer. This past May 24, almost a year later, doctors discovered he relapsed. Tyson is just beginning his relapse journey and I'm sure it would make him and his family feel great if you could leave a note of support in the guestbook.

"OH WHERE, OH WHERE HAS MY TINY BRAIN GONE?

"OH WHERE, OH WHERE HAS MY TINY BRAIN GONE?

OH WHERE, OH WHERE CAN IT BE?"

19 Days to Go

When kids are first diagnosed with cancer, and we parents are sort of walking around in a fog, it’s understandable that we would be distracted. … burn dinner, forget to cook dinner, forget to BUY food for dinner, etc. We even have a term for it on my ALL-Kids Parents Support List: “Chemo Brain”. I’m not sure, though, what the time limit is for using chemo brain as an excuse for forgetfulness. We have 19 days to go … can I still use it?

Three weeks ago, I put my checkbook in my purse one morning before leaving the house so I could pay for Brayden’s gymnastics lesson that afternoon. I ran errands all day, went home for dinner, then went to the gym, where I discovered the checkbook was gone. Obviously, it hadn’t grown legs and wandered off, so I did what any rational woman would do. I called my husband and ripped him a new one for taking the checkbook out of my purse without asking me. Imagine my embarrassment a few minutes later when Circuit City called to tell me someone had turned in the checkbook they found in the parking lot, with my name in it . Oops.

Two weeks ago, I drove off and left my debit card in an ATM machine. Apparently, if you leave a card in the machine for more than so many minutes, the machine sucks it back in. I was unaware of this, all I knew was that I tore my car and my purse apart looking for that card, to no avail. So, I felt pretty lucky when I called the bank and found out they were holding it for me.

Earlier this week, I lost my sunglasses. Not a big deal, really, except they were the first pair of REAL (ie, over $20) sunglasses I had ever bought, and I really liked them. I called the restaurant where I’m positive that I left them, but no one had turned them in. Darn it. Guess I didn’t get as lucky the third time.

So today, I went to Sunglass Hut to buy another pair ……… only to have the Sunglass Hut clerk call me tonight at home to tell me I left my credit card in her store --- what the heck is wrong with me??? Forget the learning disabilities and growth issues and emotional problems Kendrie might have to deal with for the rest of her life --- a much greater concern is the empty black-hole vacuum where my brain used to be!!!!!!!!!

Here’s another story that might clue you in on how my week went (actually, it went great, but hey, I’ve got to talk about *something* in this journal, right?!?)

As you know, we are planning an off-treatment party for Kendrie next month. I would love nothing more than to invite every single person who follows along on our Caringbridge site, and pay to have you all flown to Georgia for the party. If I was Donald Trump, or Bill Gates, trust me, I would. But anyway, we have been planning this party for some time and reserved a lodge on the Air Force base to hold it at. The lodge sits on a small, pretty lake, and I thought it would be very picturesque to have the lake as the backdrop for the party. And, most importantly, the pinnacle of the party, the highpoint of the entire celebration, was going to be the moment when we all follow Kendrie out onto the dock and clap and cheer as she raises her arms triumphantly overhead and pitches her final chemo pills into the blue depths of the water. (Not that I’ve been anticipating that moment for a long time, or anything.)

So, we drove out to the cabin the other day to pay the balance of the reservation fee …. and rounded the corner to the lodge …. imagining how fun it will be on celebration day …. and how beautiful, with the lake in the background …. Only to discover THEY DRAINED THE FREAKIN’ LAKE!!!! It is nothing but a big dry lake bed now, with a lot of rubber tires and mud out in the middle!!! Excuse me, but what the hell is that about????

Seriously, I was speechless. As I sat in the car, mute, wondering if it could possibly rain enough in the next month to fill it back up, or how many garden hoses it would take, Blaine points to a teeny, tiny puddle under the dock and says, timidly, “Well, would that work? I mean, it’s still sort of symbolic, right?”
Aaaagggghhhh! Thankfully, there is another lake around the corner, we’ll just have to walk a little ways to get there. By golly, she is THROWING that chemo in a lake, no matter what it takes --- plant and animal life be damned!!! I have had my mental image of this moment for the past twenty-six months --- and lake bed or no lake bed, MY DAUGHTER IS THROWING HER CHEMO IN THE LAKE!!! So, I hope all our local friends who are able to attend realize that not only is it a casual affair, but you might want to wear tennis shoes, especially if you want to take part in the “Victory March to the Lake” part of the party. :)

Anyway, on to more serious matters.

My online group, the one I am so thankful for and mention all the time, has gotten lots of bad news lately. In fact, I can’t remember a time in the two years that I’ve been a member that we’ve had so much all at once. Since most of these people are scattered all over the country, and the world, there really isn’t a lot I can do for them but offer up my hopes, prayers, best thoughts and warm wishes …. and encourage the rest of you to do the same.

Please visit one, some, or all of the following sites and leave a message in their guestbook. You might not think a note from a total stranger could make a person feel so buoyed, but I speak from personal experience when I tell you that it can.

New to our list, Bradley is a new diagnosis who is technically in remission but struggling a bit with his protocol, with suspicious cells still showing up. Since his family is new to Caringbridge, let’s take this opportunity to show them what a supportive community we can be.

Only a few short weeks from finishing her treatment, Hunter received the bad news that her last spinal (the same “Final Spinal” that we celebrated with Kendrie only a few weeks ago) showed some suspicious cells on the slide. They are waiting for a follow-up spinal to see if this is a fluke, or a relapse. Obviously, we are all praying for fluke, but this is a very stressful time for Hunter’s family. Please visit them so they know they are not alone during the wait.

In the same situation is Keegan, who is still awaiting word on whether his relapse is official or not. I can only assume the waiting is unbearable. Making it more difficult is the fact Keegan was hospitalized for pneumonia this past Thanksgiving weekend. I know his family still needs our support.

And yet another child also waiting to hear if he has indeed relapsed (I didn’t even know relapse could be a “maybe” situation until this past week …. And now we have several???) is Gabriel. Please visit Gabriel’s site and wish his family well during this difficult time.

A child who has already started her relapse protocol is Libby. I remember the grueling, exhausting days of induction, at the beginning of Kendrie’s treatment, and I know the relapse protocols are even more punishing and taxing on these poor kids’ little bodies. Please drop Libby and her family a note of encouragement.

I’ve written before about our online friend Cam. Cam has relapsed twice and received transplants from his brother both times. Frustratingly, his bone marrow is acting up again, and they have begun a new, experimental treatment. Cam is tolerating it well so far, but he and his family need prayers that this will be the final step on his road to a TOTAL recovery … enough is enough for this poor kid.

Recently relapsed is Alexia, who lives in South America. It is imperative that they get Alexia back in remission so she and her family can travel to the United States for a transplant. Unfortunately, she is currently suffering from typhilitis (sp?) and is in ICU on a ventilator, which means chemo is halted, which means she’s not getting closer to the remission she needs. I know Alexia could use all the good thoughts you could send her way.

Saddest of all is the news we received that Isabel passed away last week. I didn’t know Isabel’s family well through our list, but my heart breaks for them just the same, and I offer them my most sincere condolences.

The news that hit closest to home for us this week was the news that Catie’s scans came back with something questionable on them. Yes, this is the same Catie with whom we just celebrated finishing her treatment less than two weeks ago. This is her first set of scans post-treatment, and it’s about the most unfair news they could have received. Couldn’t they be given one stinking holiday season of normalcy before being hurled back into the pediatric cancer world? I’m really bitter about this one, and can’t let loose and say what I want to say here ……. But Jenny, Tre’ and Catie, you know we love you guys and are praying hourly for good news on the next set of scans.

And because I think it’s important to end this journal entry on an upbeat note, let me re-introduce you to Kevin. Kevin holds a special place in my heart, although I’m sure he has no idea (and let’s be honest, he’s a teenager, so he probably could care less, ha!) because the day I joined All-Kids was the day Kevin relapsed ….. three years after he finished his original treatment for leukemia. I had no idea what was going on, or what it meant. All I knew was the parents on my new support list were so upset! I admired this family even more when I discovered Kevin’s older brother Brian also won his battle against leukemia when he was young. I’m telling you, some of you might look at any of these Caringbridge families and think, “I just don’t know how you do it”. Well, I look at this family and think the same thing --- I don’t know them personally, but am awed by them just the same. Not because they got through it; hell, cancer parents everywhere will tell you that OF COURSE you get through it, what choice do you have? But Kevin’s mom Lisa has been a wonderful example of courage and spirit the entire two years that I have followed their journey. Believe me, they have had some serious scares throughout Kevin’s treatment, which makes this news even better: Kevin is now finished with his treatment! All my best wishes for a long, healthy life for both boys --- and HUGE congratulations!

I hope you all had a wonderful weekend and that none of you overdosed on turkey and dressing, like I practically did. While I’d like nothing more than to blame my obsessive need for naps this weekend on the L-tryptophan, I suspect the eight plates of food I had each day had more to do with it.

Take care!
Kristie
******************************************
QUOTE OF THE DAY: Said by Brayden, to me, in a parking lot today, “Hey, Mom, look at that old-timey car!” I turned around, fully expecting to see a Model-T, or an Edsel, or something. What did I actually see? A 1980 Volkswagen Bug. Yep, that was *her* idea of “old-timey”. Ouch, that hurt.

CURE CHILDHOOD CANCER -- CELEBRATING 30 YEARS

48 Days to Go

Just a brief update to let you know that Blaine made it home safe and sound (and relatively quickly; it's a miracle!) yesterday and is now relaxing quietly and comfortably on the sofa. Ha, yeah right. He wasn’t home ten minutes and the kids were all over him, but at least he knows he was missed. In between him and his Percocet, and my mom and her Lortab, we’re running a veritable Narcotics Hospital in the kitchen, but at least everyone feels pretty good.

Also wanted to share with you this years version of The Lazy Man’s Guide To Carving Pumpkins:


Kendrie, Brayden, and Kellen show off their Halloween 2005 Masterpieces.


Those of you who live in the Atlanta area are familiar with CURE: “CURE Childhood Cancer was founded in 1975 as a non-profit organization dedicated to conquering childhood cancer through research, education and support of patients and their families. Until there is a cure for every child diagnosed with cancer - CURE will be there.”

The rest of you might not know that CURE is a wonderful organization that helps families affected by childhood cancer in a variety of ways, in addition to working towards finding a cure for pediatric cancer. Each year, they send out a fundraising letter, asking the parent of a local child to contribute to the letter. I was really flattered to be asked this year and thought I would share the text of the letter with all of you. For more information, or to make a donation, please visit CURE's website.

"Fall 2005

Dear Friends,

There are certain moments in life when you have no choice but to laugh: like when you come out of the ladies restroom and realize your skirt is tucked into your pantyhose. There are other moments in life when you really *shouldn’t* laugh, but can’t help yourself: like when your sister comes out with her skirt tucked into her pantyhose. And, then, there are certain moments when a person wonders if they’ll ever laugh again: when their child’s doctor places his or her hand on their shoulder and says gently, “I’m so sorry, it’s cancer.”

That moment came for our family in October of 2003 when our daughter Kendrie, who had just turned four, was diagnosed with leukemia. Devastated, disbelieving, distraught, despairing -- there aren’t enough “D” words to express how we felt at that moment. When the security of your boring, normal life spins away from you in the blink of an eye, what exactly do you DO? Well, you worry, lose sleep, experience fear like you’ve never known, cry, bargain with God, obsessively surf the web, and in MY case, stress-eat a boatload of chocolate. Then you wake up and realize “Thank goodness we don’t have to go it alone.”

Researchers have made amazing strides in the treatments for childhood cancer. Although still the #1 disease killer in children, statistics have improved greatly. In 1975, a child diagnosed with leukemia had only a 20 percent chance of survival. Today, that chance is closer to 80 percent. Sounds good, huh? But when it’s YOUR child, anything less than 100 percent isn’t acceptable. Consider this: If one in five kids died on the soccer field, would you sign your child up to play? And we’re the “lucky” ones with leukemia; other forms of childhood cancer have odds nowhere near as high as 80 percent.

CURE Childhood Cancer is dedicated to conquering childhood cancer through research, education, and the support of patients and their families. Our first day in the hospital after Kendrie was diagnosed, we received a Welcome Bag from CURE and an invitation to their weekly Open Arms gathering at Scottish Rite. On this, their 30th anniversary, CURE continues to help fund research so a cure can be found in our lifetime. In the meantime, they are providing valuable support and services for families. So much progress has been made in 30 years -- won’t it be wonderful to reach the day when NO child dies of cancer?

You can help make that day possible by donating to CURE. Feel confident that you are helping CURE fulfill its mission of helping families both in the short-term, and towards the long-term goal of eradicating childhood cancer.

As for us, Kendrie is enjoying kindergarten, doing well and is slated to finish treatment this December, after 26 months of chemotherapy. It’s been a long two years, and at times, a struggle to remain cheerful and to remember that laughter is the best medicine. (Well, laughter, steroids, vincristine, 6mp, methotrexate … the list goes on and on!) For our family, though, there is light at the end of the tunnel. And unlike those dark days at the beginning, we no longer think that light is a train headed our way. Other families, however, are in the thick of the fight, or just beginning. Please donate to CURE and help those families to realize, like we did, “Thank goodness we don’t have to go it alone.”

Thank you"


Well, I hope all of you have a wonderful Halloween on Monday --- assuming my kids survive the sugar high, I'll post photos afterwards. :)

Take care and have a nice weekend,
Kristie

FINAL SPINAL, BABY, FINAL SPINAL !!!!!!!!!!

65 Days to Go!

Wonderful News!!! (aka; The Cake): You have no idea the joy I felt when the nurse turned to me during Kendrie’s lumbar puncture yesterday and said, “You realize this is her FINAL SPINAL, right?” What magnificent words, indeed! Of course, it’s also a bit scary to know that was the last time they will inject protective chemo into her spine, to prevent leukemia cells from entering her central nervous system. But if I can let go of my safety cord, and my fear and paranoia and panic and alarm and obsession and terror, then it’s a wonderful thing indeed. No more NPO procedures, (until she gets her port out, anyway) listening to her complain about how hungry she is and when will she be able to eat? No more driving to Atlanta the night before and staying in a hotel room; no more sleepy medicine, no more back pokes, no more all-day clinic appointments. Final spinal, baby --- what a milestone!

More Wonderful News (aka: The Icing on the Cake): We had allotted ourselves enough time yesterday for Kendrie to receive her 2-3 hour IVIG transfusion, but her counts were high enough that the doctor didn’t think it was warranted. So once we realized we were sprung from the clinic earlier than planned, we called our friends Jenny and Catie, who are staying at the Atlanta Ronald McDonald house while Catie undergoes radiation treatments for her brain tumor, and promptly invited ourselves for lunch. There is a slight chance that Jenny and Catie were just being polite, having no real choice in the matter since we barged in on them like that, but I think after staying far away from home for weeks on end, there is definitely a remote possibility that they actually enjoyed the company -- I know we sure did! Thanks, Jenny and Catie! We will miss you this weekend at the beach!

Worrisome News: (AP report, Watercolor, FL): Residents of Watercolor, Florida, a beautiful seaside resort located near Destin in the panhandle of Florida, are battening down the hatches yet again in anticipation of the fourth hurricane this season, expected to rip through their sleepy community sometime this weekend. Despite the head-on devastation of Hurricane Dennis in July, and the remnants of Hurricanes Katrina and Rita this fall, residents have feared nothing as much as they fear the havoc that might be wreaked by the latest in the string of fury released by Mother Nature: Hurricane Kendrie.

With steroid-force winds and gales raging at 100 TPH (tantrums per hour), Hurricane Kendrie is expected to make landfall in Watercolor at approximately noon on Thursday. According to the Farmers Almanac, Thursday *should* be a day of celebration -- Oct 13th -- as Kendrie revels in the two-year anniversary of the day she was diagnosed with leukemia and subsequently began kicking cancer’s butt. However, locals fear the side effects from this month’s steroid-storm system will overshadow any anniversary commemoration plans. Instead of planning merriment for the two years Kendrie has been a survivor, Watercolor residents are stocking up on mac & cheese, bacon, and zofran.

Other Georgia residents, converging on Watercolor in anticipation of joining the Escoe family at the Lighthouse Family Retreat, are warned to take cover and be prepared. Destruction effects could possibly include whining, crying, extreme hunger, disagreement, surliness, unfriendliness and hostility. Lingering effects could include weeping, howling, bickering, and pouting. Be afraid, people of Florida --- be very afraid.

Kristie
************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Geez, Louise, where should I start? I have an entire laundry list of ways I was tortured and baited and set upon by cruel adults yesterday while I was at the clinic. First, I had to get sleepy medicine, which always makes me cry and moan, but overall, wasn’t too bad. But THEN, those nurses, who are nowhere NEAR as sneaky as they think they are, came up while I was still on the table and stuck a big needle in my arm ---- a Flu Shot! Did they think I wouldn’t notice??? And the only thing I hate worse than needles? Band-aids! Guess what they gave me over my flu shot? Band-aid #1. Then, the nurse-practitioner doing my LP stuck a band-aid on my back -- band aid #2! Then, like that’s not bad enough, like I haven’t suffered enough at the hands of these people, she couldn’t get all the tape off, so I came home with more tape on my back that I had to peel off ---- I WAS NOT VERY HAPPY LAST NIGHT WHEN I GOT IN THE BATHTUB AND KEPT FINDING BANDAIDS AND TAPE ALL OVER MY LITTLE BODY!!!! It’s not steroids that makes me crazy, IT’S ALL YOU STUPID BIG PEOPLE!!!!

BEST PART ABOUT HAVING CANCER TODAY: No doubt, it was getting to see my friend Catie at the Ronald McDonald House for lunch. Her grandma gave me a brownie (and I embarrassed my mom by not eating it all after I asked for it, but I was too full from all those goldfish the nurses gave me after my sleepy medicine) and I got to play in Catie’s room with some of her toys from home. It was a neat place, but I’m sure Catie and her mom are ready to be done with radiation and get back home with Catie’s daddy where they are much more comfortable.

THE FINAL COUNTDOWN --- 100 DAYS TO GO!

Wednesday morning update: Well, although Kendrie is home from school again today with a nasty sounding cough and runny/stuffy nose, the fevers have stopped. We spent the day driving to and from the clinic for IV Rocephin, but since her ANC was 1500, we were able to go home .... just warned to watch for more fever, or if she starts feeling seriously punky. So, the verdict appears to be nothing more than a late-summer cold, which for normal people is just annoying, but for a kid with a port-a-cath in her chest, is just a little bit more. I'm pretty sure she'll be back at school tomorrow, anyway. And thanks for the happy birthday wishes for me, too. Yes, Natalie, you are correct. 25. :) (Kidding. I am frighteningly close to finding out for myself if 40 is *really* the new 30!) :)


Tues morning update: Well, scratch my optimistic comment about "no fever". Kendrie woke up at 3am running a little over 101, and it hasn't broke yet, so the on-call oncologist has instructed us to head to the clinic for a fun-filled day of bloodwork and IV antibiotics. Not to blab toooooo much personal information, but happy *&^*&^# birthday to me.

*****************************************************


First of all, thanks so much to all of you who left Kendrie birthday wishes in the guestbook over the weekend. I was out of town and didn’t check the guestbook between Friday morning and last night, so logging in and seeing all those well wishes for her was truly heart-warming. I print out the guestbook every so often and I know that the same messages that mean so much to Blaine and I, as a show of support now, will mean just as much to Kendrie someday. She likes hearing them nowadays, but I’m confident that when she gets older they will be even more precious. I will update with photos of her birthday party after the weekend, also. (holding your breath, aren’t you?) :)

Now, for our “big” news ---- she only has 100 days of treatment left! Actually, I think its 102 and that I must have miscounted somewhere, but we’ll jiggle the dates in a later entry. Today, we feel like celebrating this milestone! Can you believe that when she started we were staring down 786 days of protocol?? One hundred might sound like a lot to some of you, but compared to 786, I think it will fly by. Let me sum it up for you in another way:

Only 120 doses of oral chemo pills left. Some nights it’s four pills, some nights it’s eight, but she gets them all at the same time, and she only gets morning steroids five days a month, so “technically”, it’s only 120 doses to go!

Only 56 doses of oral prophylactic liquid antibiotic to go. Sort of. She’ll stay on this antibiotic for several months after treatment, as a preventative measure …. but only 56 "official" doses to go!

Barring any complications or unexplained fevers, only four port accesses to go!

Only four doses of IV chemotherapy to go!

Only two transfusions of IVIG to go!

Only ONE spinal tap to go!

I really feel as though we can see the light at the end of the tunnel. The picture at the top of the page is supposed to be all three kids, holding up fingers to show the wonderful number 100 …. but Blaine had to be recruited because Brayden was too busy pouting and telling me how much she hates me to pose. Five minutes later, she and Kellen were doing the cha-cha around the living room. Truly, she’s a sweet child. Either entering the pre-teen years, or possessed by Satan. I’m not sure which.

Regarding these final 100 days, I’m guessing most of the parents out there can identify with some of my feelings. When your first child is born, you are so excited to reach each milestone (First bath! Solid food! First tooth! Crawling! Walking!) that you wind up wishing away their first year and then sitting back wondering where the hell the time went.

With your second child, you’re so busy making sure everyone is fed and clean and dry and safe and not flushing the remote down the toilet that at the end of *their* first year, you look up and wonder where the hell the time went.

With your third child, especially if you know it will be your last child, you have finally learned to stop and smell the roses. (Which is better than the smell of dirty diapers you’ve been firmly entrenched in for the previous two years!) With Kendrie, I snuggled more, relaxed more, and simply enjoyed the present for what it was. Hey, I had three kids under the age of two and a half, but I was just getting the hang of this peaceful, savoring-the-moment thing.

Fast forward to October 13, 2003, the day she was diagnosed with leukemia.

On October 16, the day she began her chemotherapy treatment, I didn’t think those 786 days would ever end. I was terrified we wouldn’t GET to the end. I admit it, I have blatantly and willingly wished away the past two years of her life (Intensification! Consolidation! First Interim Maintenance! First Delayed Intensification! Second IM! Second DI! Long-term Maintenance!) and, I admit, I will be wishing away the next 100 days as well.

I’m sure when these twenty-six months are behind us, I will regret that I spent so much time wishing for it to hurry up and be over. I’m sure there have been moments …. the present … that I have missed because my eyes were too fixated on the goal at the end. Just getting to the end is a miracle. Maybe being excited about it isn’t such a terrible thing.

I hope everyone is having a nice Labor Day weekend. We had plans to take the kids fishing, then out to dinner to celebrate Kendrie’s birthday. Unfortunately, she woke up this morning with a stuffy/runny nose and a cough. We started the summer with a cold, I guess it’s only fitting that we end with one as well. Hopefully she’ll be feeling better in time for school tomorrow. No fever, so we’re not too worried yet. In light of everything that has taken place a few hundred miles to our west, it seems a little frivolous to be having a birthday dinner anyway. I feel I should write something profound about the loss and devastation, but there really aren’t any words. Plus, to be honest, I’m giving thanks for the last 686 days, and looking ahead to the next 100. I wish the same peace for the hurricane survivors.

Fondly,
Kristie
***************************************************

KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I don’t think it’s cancer-related, but I am getting dang sick and tired of coughing and sneezing today, and of my mom and dad checking my forehead all day. They think they are so sneaky, but I can see right through them! “Checking to see if any more hair has grown” …. My foot!

BEST PART ABOUT HAVING CANCER TODAY: Well, at least I just took my last dose of Bactrim a few minutes ago and don’t have to take any more of that foul-tasting crap for the next six days --- that’s a good thing, right?

PS. Hey! We have been truly blessed by the family and friends that have followed along on our journey and who faithfully continue to check in on my insane journal ramblings. According to my calculations, we should hit visitor #400,000 sometime near the end of this week! If you are that person, would you please sign the guestbook and let us know? I'd be honored to make a Caringbridge donation in your honor ... much like our dear friends Mr. Bruce and Mrs. Sandy did for Kendrie last week. Thank you!

IS THERE SUCH THING AS A MEDICATION REFILL TREADMILL? BECAUSE I THINK I’M ON IT AND I WANT TO GET OFF!

113 Days to Go

Whether or not your child gets cancer? Random. Whether or not your child handles chemo well? Random. Whether or not your child relapses? Random. So when you find something --- anything --- over which you have a smidgeon of control, you manage it and feel smug about it. Since Kendrie was diagnosed and started chemotherapy, some 679-odd days ago, Blaine and I have taken total and complete control of her medication. And, if I do say so myself, we’ve done it well. She had never missed a day or a dose of meds; she had never missed a doctor’s appointment; and I can count the number of times on one hand that we’ve fudged the “no food or dairy two hours before bedtime” rule since entering long term maintenance. For anal control freaks like us, it was a pretty good record.

Then, imagine my dismay when I went out of town last weekend, only to receive a call from Blaine on Saturday morning, while he was standing in the Eckerd’s pharmacy waiting area, to tell me that not only had she run out of .5 mg dexamethazone (steroid) ….. but the prescription had also expired the day before …. AND, to add insult to injury, Eckerd’s couldn’t even float us the four pills we needed until Monday because they were completely out.

You have to understand that Blaine and I have a very clear delineation of duties when it comes to chemo meds. He holds her still; I give her shots. He marks the medication chart with a highlighter each evening; I sneakily check over his shoulder to make sure he’s doing it right. He gives her the oral meds; I am responsible for making sure all prescriptions are refilled in a timely manner. So the sudden, unexpected Eckerd’s-steroid dilemma was all me, baby. Ugh. Call the engraver; the Mother-of-the-Year Award has slipped through my fingers again. In all seriousness, I was pretty upset about it. What kind of loser doesn’t check to make sure her daughter has enough chemo before going out of town???

Here’s where the treadmill started: Her methotrexate is on a 30-day auto-refill cycle and we get double what we need each month. Despite telling Eckerd’s we have enough methotrexate pills to take care of *several* chemo kids, for about twenty years, they keep filling it each month. Fine. Whatever. I had double-checked her Claritin, which was fine, and already refilled her Singulair that week. She had plenty of her other steroid, the 4 mg. I noticed before I went out of town that she was running low on Zofran, but only one pharmacy, way across town, carries the dissolvables, so I decided to fill that one later, since that same pharmacy across town is the only one that will flavor her liquid Bactrim and she still had two weeks worth of that.

So, back to the steroid delimma. Monday morning first thing I called her nurse and explained what I had done wrong, fully expecting her to report me to Child Services for neglect. I had already done the math --- Kendrie gets a total of 5 mg of steroids each day, for five days each month, for 17 months of long-term maintenance. So, thanks to my carelessness, Kendrie had missed .04 percent of her total steroids. Seeing how small the number was made me feel slightly better about my total lack of parenting ability …. The fact her nurse told me to “Get a grip, you dork” made me feel even better. (Footnote for chemo parents: .04 percent is NOT enough to negate the ‘roid rage of the month, just fyi.)

After calling the doctor and the pharmacy and getting the prescription refilled, and deciding that maybe, just maybe, I’m not the worst parent on the planet ….. after all, there are so many different meds, given at different amounts at different times on different days in different increments, really, it’s probably ok to cut myself some slack, right? Then, Blaine climbed into bed last night and the last thing he said to me before falling asleep was, “Kendrie’s almost out of 6mp …. And Eckerds called with another methotrexate refill …. Can you take care of both those things tomorrow?”

Ah, it’s good to have a purpose in life and be needed again . But I'll admit, I’m excited for this treadmill to stop. Counting down, less than four months to go!

Once again, thanks to all of you for the kind notes about Kendrie’s school, hair and clothes. I was thrilled tonight when she agreed to let Blaine buzz the ring of fuzzy hair around her ears and neck off. Now, she’s got the little duckling fuzz all over and it looks SO much better. In fact, I find myself kissing the top of her head obsessively, just to feel how soft it is, and some total stranger at school today, a fellow student that Kendrie had never seen before, came up to her and started rubbing the top of her head. Maybe he had a math test and needed luck, who knows?

But I was inwardly congratulating myself on raising a child who has the ability to overcome her own (and other children’s) perceptions about how a little girl perhaps *should* look …. A child with the self-confidence to be herself …. The poise and assurance that how she looks is both beautiful, and no-one else’s concern ….. So imagine my surprise when she told me tonight that she couldn’t wear her green t-shirt tomorrow because “Well, you know, Nicholas really likes me to wear shirts with pictures on them.”

Great. Now she’s taking wardrobe instructions from her 5-yr old boyfriend? Maybe she’s not quite as poised as I thought she was.

Thanks for checking in …. In the meantime, looks like I’m off to Eckerd’s.

PS. One of the fun things I got to do this weekend, besides place my daughter’s health in jeopardy with my inattention, was meet for the first time some fellow ALL-list members, Donna, mom to Molly and Billy, and also Michele, mom to Brendan. If you had told me a few years ago I’d be not only meeting people I “know” only through the internet, but having a total blast doing it, I would have said you were crazy. But it’s amazing how much you can have in common with a relative stranger when you’ve faced some of the same challenges. So, Donna and Michele, I had a marvelous time hanging out with you guys and want to say Thanks for welcoming me into your lives!

Take care,
Kristie
*****************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: My dad kept coming after me, prompted by my mom, with his clippers. Since Kellen was getting his buzzed, I decided to let Dad do mine, too. What is this world coming to when a beauty like myself gets her hair done, standing in the garage with a towel draped over her shoulders, by her dad???

BEST PART ABOUT HAVING CANCER TODAY: At least I won’t have to listen to my mom’s not-so-subtle hints about my last little ring of hair anymore.