I WANT TO RIDE MY BICYCLE!

16 Days to Go

So, can you guess what the highlight of our Thanksgiving vacation was? Take a close look at the photos ……….. what is missing? Yep, you figured it out, training wheels!

Check out our cyclist in action:





Oops, obviously we haven’t perfected our technique yet. Braking and turning were the hardest maneuvers to master. Thankfully she figured both out before any serious damage was done.



And as long as you hold your tongue just right, balancing is easy!


That’s the lucky part of living in the south-eastern part of the country ---- the last day of November, and it’s still 60 degrees outside. Of course, if there’s also a brisk wind blowing, mom might be sitting in a lawn chair with her winter coat and gloves on, but the kids are still happy to be playing outside! Well, I should clarify, “happy” until Kendrie rode her bike under the basketball goal, just in time for Kellen to miss a lay-up and the basketball to fall in a perfect, well-defined, slow-motion arc …….. and land square on the top of Kendrie’s head. I’m telling you, they couldn’t have done it again if they had tried!!!

So even though there were tears shed and lots of yelling, maybe NOW they will understand why I make them wear a helmet ….. the heck with spills and injury and concussion, it’s all about those pesky stray basketballs!!!

Hope you are all having a great week,
Kristie
**************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I felt sort of punky at school yesterday so I had the school nurse call my mom and do you know what? My mom had left her cell phone in the car and didn’t realize it ---- so she never called back! I think I should file some sort of abandonment charge or something! Good thing Nurse B. has my back.

BEST PART ABOUT HAVING CANCER TODAY: Did you SEE the number at the top of this entry???? Only sixteen days to go, baby …. SIXTEEN!!!

"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.

LATHER, RINSE, REPEAT

(AKA, KRISTIE IS TOO LAZY TO WRITE AN ORGINAL JOURNAL ENTRY TODAY)

23 Days to Go

Two years and a month ago, give or take a few days, Kendrie was diagnosed with leukemia. It took me three weeks to discover Caringbridge. It took about three weeks after that for me to start using Caringbridge not as a method for keeping family and friends updated on her condition, which is how it started, but as the cathartic, therapeutic, beneficial tool it has become for me. I’ve said it all along, CB has kept me off the couch. Actually, this **is** my couch; virtual, online, cheap therapy.

But my very first, honest, laying-it-on-the-line Caringbridge entry took place on Thanksgiving, 2003. I was still pretty raw from diagnosis, and emotional, and exhausted, and felt the need to clear up a misconception that seemed to have occurred: That I was taking Kendrie’s leukemia diagnosis in stride, and was even pretty optimistic. That couldn’t have been further from the truth!!

So I wrote an entry telling people how my emotions were really running …. And you know what? Getting it off my chest like that felt gooooooooooood! And so you guys have been stuck with me and my absurd ramblings ever since. But I figured there was no need to ramble afresh today, since that Thanksgiving 2003 entry still rings true for me. Sure, things are slightly different now. We are nearing the END of treatment, not just starting out. Ignorance is bliss and I’m no longer ignorant to the unfairness of childhood cancer. The crap sandwich we have left on our plate is crumb-sized ….. we’ll be choking down the last few bites in the upcoming weeks and then OUR. PLATE. WILL. BE. EMPTY!!!

But, we’ll be required to hang out in the bar of the restaurant for the next five years or so. We won’t order off a menu, or make eye-contact with any employee on purpose, heaven forbid. For the next five years we will sit in the bar and keep a low profile and hope and pray the waitress doesn’t come back to our table. I’m not sure when we can ever pay our check and leave ….. and as long as we’re here, we’ll continue to see crap sandwiches being slung out of the kitchen on a regular basis. You don’t want one yourself, and you hate to see anyone else getting one, either. But you know they’re coming. So you just duck and pray you don’t get hit.

Anyway, those of you who didn’t follow along in our journal back then probably have no idea what I’m even talking about! (Although to be fair, do you ever? I do have a tendency to go off on some pretty bizarre tangents!) So I’m going to repeat the journal entry now, and hope that all of you enjoy it. Again.

Here goes:

Friday, November 28, 2003 0:21 AM CST
KRISTIE'S PATHETIC, LAME, COMPLETELY RIDICULOUS CANCER/THANKSGIVING ANALOGY:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There are some things I am truly grateful for:

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

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

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

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

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

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

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

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

THANKFUL FOR THINGS I DIDN’T EXPECT

25 Days to Go

After posting my last journal entry about my fascination with Harry Potter, it occurred to me that I actually have cancer to thank for learning about him. (If you’re a HP fan and didn’t get a chance to read the entry, go into the journal history and look at it, because I gave a link to a really humorous site.) Of course I had heard of the Harry Potter series ….. who hadn’t? But I never thought I would enjoy it; sci-fi, fantasy, wizards and witchcraft … SO not my thing!

Then one day, three or four months after Kendrie was diagnosed with leukemia, she and I went to the clinic for one of her chemo appointments. I had gotten confused (imagine that) and thought that particular day’s appointment was a short one when in actuality it was a long day of IV chemo and transfusions. I was completely unprepared; no dvd player, no books, no magazines, etc. Kendrie, of course, was pre-medicated with Benadryl and slept through the entire process, but there I sat with six hours stretching out in front of me and absolutely nothing to do to pass the time. This was back before our clinic was remodeled and we didn’t have private transfusion rooms, so I couldn’t even stretch back in my chair and take a good nap myself.

In desperation, I walked over to the kids’ library cart, hoping to find ANYTHING to read to kill a few hours. As I browsed my choices (along the lines of The Very Hungry Caterpillar, Curious George, and a few Captain Underpants books) I saw the only book that appealed to anyone over age eight --- Harry Potter and the Sorcerer’s Stone. I scoffed a bit, since I just knew the book would be so stupid and boring, but hey, if you’re desperate, you’re desperate, and I settled in with the book, my introduction to Harry and Hermoine and Ron and the gang.

Needless to say, when Kendrie woke a few hours later and I hadn’t yet finished the book, I snuck it into my purse and stole it from the clinic! By the end of the week I had purchased and read every HP book written to date, and thus, my obsession began. (PS. I DID return the book at our next visit, just in case you were wondering about my kleptomaniac tendencies!) So anyway, I consider Harry Potter to be one of the unexpected perks of Kendrie getting cancer. In a very weird, twisted way. And I’m thankful.

I’ve heard people say that a cancer diagnosis is a gift; making us better people, more appreciative of the little things in life, more patient, happier with our children, more grateful for every moment we get to spend together, etc. You know what I say to that? I say blah, Blah, BLAH! (imagine me making little “talking” motions with my hands) I would much rather be less appreciative, less grateful, less patient, and a suckier person all around, if that meant my daughter never had to go through ANY of this! If you think I’m going to say I’m thankful she got cancer, you’ve obviously dipped into the holiday eggnog a little early this year.

But, like my discovery of Harry Potter, there are some things I can *indirectly* thank cancer for, and I think this Thanksgiving Week might be the perfect time to do so. So, here are my top five, "Good Things That Have Come From Cancer":

1) I have cancer to thank for getting in touch with my “feminine side”. While I am still anti-pedicure, and the thought of someone touching me for a massage gives me hives, I am able now to give hugs a little more freely and let people know how much I care about them. I’m not so uptight about expressing my emotions. Don’t get me wrong, I’ve always cried at appropriate moments (like when they took “Thirty Something” off the air, and when Bill Clinton was elected President. Both times.) But now I find myself crying all the time….. reading books, listening to music, Hallmark commercials on tv … I’m pretty much a sobbing fool. And things that should be normal rites of childhood, like watching your daughter step up to bat for the first time at t-ball, or singing with her fellow kindergarteners at her Thanksgiving Feast … well, most parents simply smile proudly. I, however, am reduced to sniffling and dabbing at my eyes with Kleenex, so very thrilled with all Kendrie has overcome, unable to stop the torrent of happy tears that threaten. On second thought, maybe I shouldn’t be thankful for the blubbering mess I’ve become. It’s actually quite embarrassing.

2) I have lost friends, and I am, in reality, grateful. Being a military wife for the past eighteen years, I spent way too much time and energy trying to maintain friendships and relationships (some up-close, some long-distance) that really needed to die a natural death. I was the sort of person that always thought, “One more letter, one more phone call or e-mail, I’ll keep trying …. I hate to lose a friendship, even if I am the one doing all the work.” I know it sounds clichéd, but after Kendrie was diagnosed, we learned quickly who our real friends were. We had some casual acquaintances who stepped up to the plate and became good friends, and we feel blessed to have made new, valuable friendships along the way. We’ve even met total strangers who have made it their life’s work to help families in our situation. This experience has freed me up to say, “You know, if you couldn’t bother to call and check on us, or drop us a note, or check this caringbridge site, when our daughter was diagnosed with cancer, for Pete’s sake, then it is clear to me that our relationship was one-sided, and I feel no guilt about letting it go.” The people who are in our lives now actually care about us. Do you have any idea how empowering that is???? Plus, it saves me money on Christmas card postage during the holidays.

3) I have a much clearer perspective and can now see the difference between a crummy day and a true tragedy. I used to be guilty of complaining about “having the WORST day ever!!!” You know the kind, when you discover someone else finished the box of your favorite cereal, or you get a flat tire, or the shirt you want to wear is still in the washer, or your kid spills milk on your pants just as you’re walking out the door, or you leave your lunch sitting on the counter when you go to work, or you can’t find your favorite earrings, or your cable goes out and you miss your favorite tv show, or you get a “C” on a test, or you get a parking ticket, or any number of things that seem to happen to people on a daily basis. And my favorite (or least favorite, depending on your point of view) is how I can now put my own childrens' illnesses into perspective. If Brayden has a cough, or Kellen throws up or has a head-cold … yes, I feel bad for them. Yes, I comfort them and give them medicine and baby them just a bit. But I do NOT walk around believing (and complaining to anyone who will listen) that this is just the worst day EVER because my child is sick. (Or because I dropped the mayonnaise jar and it broke on the kitchen floor, or something equally inane.) When someone tells me how terrible their day has been, I want to look them in the eye and ask, “I’m sorry … did a doctor tell you today that your child has cancer? Because if not, then I don’t think your day was that bad after all.” And while it might sound harsh, an attitude like that is also sort of empowering. People don’t tend to whine around you when they realize they are not getting a smidge of sympathy.

4) The flip side of my crappy-day reason is that having known a TRULY crappy day, the day Kendrie was diagnosed, I realize there are people having much, much crappier days then me and it helps to stay in balance with my own feelings. I don't resort to throwing myself pity-parties near as often. Yes, I still gripe when the microwave breaks, or my kids are fighting, or the dryer goes out, or I burn dinner, or any other number of annoying things happen. It’s life, after all, and some days just don’t run smoothly. But I’m able now to remember that a crappy day is OVER at midnight and you get a fresh start the next morning. And as long as I don’t hear that one of my children has cancer ….. or has relapsed … or worse, which parents everywhere are forced to hear on a daily basis, then I know my day is really not that bad after all, even if the dog did throw up all over the living room carpet. And that’s empowering, also, to know that every 24 hours you get a do-over.

Obviously, I’m all about the empowerment. I just need to figure out a way to make weeping in public seem empowering, then I’ll be all set. :)

5) And ok, it’s trite and hackneyed, but I honestly do appreciate the good moments a little more. Sure, I still get upset with my kids (understatement of the year.) Not every day is gloriously happy, full of bunnies and rainbows, but I don’t take it for granted anymore. And while I know I’m not the best parent on the planet (Shoot, I’m not even the best parent in North America … or in Georgia … or in Byron …. Or even in my own house!) I do treasure the good moments, and enjoy them, and never forget to tell my kids I love them (when I’m not yelling at them for being obnoxious hooligans.)

So that’s it, my list of five things I can be thankful for *because* of cancer …. Because I will never be thankful for cancer. But I can be thankful for the changes it has brought about in me, hopefully for the better. (again, except for the crying …. I’m still trying to figure that one out!)

Hope you are all having a great week,
Kristie
****************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I’m getting so close to the end, I almost forget there is supposed to be a worst part every day!

BEST PART ABOUT HAVING CANCER TODAY: No doubt, hands-down, going with my family to the Immunization Clinic on base today and watching while my dad, my mom, Brayden and Kellen ALL had to get their flu shots and knowing I already got mine during my last spinal tap!! Can you believe my mom said “Ouch!” louder than my brother or my sister? Obviously, courage doesn’t come with age, or she would have been the bravest one there!

My man, HP

I had a big night tonight. A night so big, perhaps, that if I confess, you will realize that deep-down, I am 12 years old. Can you guess???

I attended the Harry Potter IV "Goblet of Fire" movie, wahooooo!!!! If you're a Harry Potter die-hard fan like me, you've already seen the movie because it's been out 24 hours and what the heck would you wait on?

If you're not a HP fan, especially if it's because you have concerns regarding witchcraft and sorcery and the possibility it might lead children down deep, dark paths ....... well, seriously, you need to lighten up. It's a fabulous coming-of-age tale of good vs. evil, simply brimming with friendship, loyalty, adventure, etc. But, if you've never read them, don't bother going to the following website; I just don't know if you would appreciate it.

I have several favorite non-Caringbridge sites I visit on a regular basis that I've never shared with all of you because once I sent you there, you would realize that these people are all funnier than me, and then you'd quit coming here.

But, in celebration of HP4, I just have to share; go to this site for a serious laugh: Spellcasting 101: Don't Try This at Home Even if you're NOT a HP fan, I promise you'll get a chuckle out of it!

Have a great night .... I'm off to count down the days until the premiere of HP5!! :)

8-YR OLD PERSPECTIVE

31 Days to Go

You know how depending on your perspective, some things can be seen as a positive, or as a negative? Well, I have recently come to the conclusion that my children are either budding literary geniuses, or total scam artists. I’m not sure which.

Last week, Kellen started writing stories at home. Not homework, or school assignments, but stories out of his imagination, for fun. And quite a project it became. He got special paper with no lines, folded and stapled it so it would look like a book, entered a table of contents, chapter headings, and even had Brayden do illustrations. He slaved over the spelling and punctuation; really, I couldn’t have been prouder, watching him work so hard on his creation.

Then he sold it to me for a dollar. PLUS a quarter for the artist-fee.

His first story was entitled “Brayden and Kendrie and the Big Fight” (who only knows where he comes up with these wild, crazy, unbelievable, tall tales???) It was a very detailed narrative involving sisters who get on each other's nerves. They start out with name-calling and making faces at one another, progress to pinching and hitting, and then the story culminates in a public de-pantsing. Needless to say, Kendrie cried when he read the book aloud, so you can guess which character became pants-less. Brayden’s drawings were a bit biased, as well, as most of the time the character of Kendrie was portrayed laying on the ground, crying. All told, it was a very mean-spirited little tale.

The second story, entitled “The Big Happy Family” was much more to my liking. Peace, harmony, hand-holding; the whole nine yards. When I told Kellen how much more I liked that story, and how I felt it was a better depiction of our family, he replied “Oh, that’s not OUR family! Our family’s not like that!”

Well that’s the last dollar the little troll got out of me, that’s for sure.

I decided to try and steer this budding talent in a more positive direction, and perhaps more experience-based, so I asked both of them to write a story about a family whose youngest daughter gets cancer, and what happens to the family. (It doesn’t take much more than Psychology 101 to know I wanted to see what’s going on in those little pointed heads of theirs.) Kellen refused once I told him I wasn’t paying him another dollar, but Brayden agreed. I thought I would share her story with all of you:

“A Tough Time”

One day when Kendrie was diagnosed with cancer it was October 2003 and it was her 4th Halloween. But she was only 4 years old. So it was a tough time. And she was nervous so much. But years gone by but she does hate getting her port accessed. And my dad remembers that he was going to the hospital in Macon, saying a prayer, talking to his parents and talking to Dr. B. And my mom remembers that Grandma flying out here to take care of me and Kellen. And now she is 6 years old and she has gotten braver than she was before. And today she went to the clinic to get her port accessed. But she always cries when she gets her port accessed. And she gets to go to the treasure box but she does not want to stop going to the treasure box so she is a little disappointed. But on the other hand she is almost done on December the 15th year of 2005. And so she only got one month to go and after she is done with cancer she will get her port out. Then we will give Kendrie a party for her cancer being over but she will have to go to Dr. B for check ups.

PS. Kendrie went to lunch with Catie and she has cancer, too. And Catie is done with cancer and we are so excited for Catie to get hair because she has never gotten her hair, ever.”

So, I don’t know if it’s particularly profound or wise, but I do think she got the gist of the story, even if we do need to work quite a bit on her grammar. All told, though, I think her 8-yr old perspective is a good one.

Take care,
Kristie
**************************************************
PS. Quote of the day:

Kellen, placing his hands over his breasts: “Mom, did you know these are your pet turtles?”

Kristie: “What are you talking about? Pet turtles? PET TURTLES??? What dorky kid at school taught you that stupid name for breasts? Just call them breasts!”

Kellen: “I didn’t say pet turtles. I said Pec-torals! We’re learning about them in gym class.

Kristie: “Oh, well. Of course you are.”

LIVING VICARIOUSLY THROUGH YOU, BABY!

35 Days to Go

Thanks so much to all of you who responded to my nervous ramblings as kindly and empathetically as you did. It’s comforting to know that more experienced cancer parents have “been there done that” and that all parents, those whose children have other illnesses, and even those whose children are healthy, sometimes get caught with dark thoughts in their head. Thankfully, like almost everything else in my head, nothing sticks around long!

And so, because Rule #1 in Creative Writing Class is “Don’t Depress People on a Regular Basis” (Actually, I have no idea if that’s rule #1. I don’t even know if there ARE any rules in creative writing. I dropped out of college. What a loser. Kids, do NOT try that at home! ) I was feeling pretty unsettled with my last entry, so I’m giving you guys good news with today’s entry. No more depressing babbling. Otherwise, coming here to visit this site would be about as appealing as your annual proctologist’s visit. So read on for much cheerier stuff!

Kendrie had her next-to-last clinic visit for chemo yesterday ….. it’s getting very surreal, to say the least. She will continue to go to Atlanta once a month (or perhaps once every other month, getting local labs drawn in between) for a year after she goes off-treatment. Then the visits will gradually get spaced out more and more …. Once every three months for a year, once every four months, every six months, etc. I was so busy talking to her oncologist, in a half-joking-but-not-really sort of way about “is he absolutely, positively sure it’s ok for her to go off chemo?”, that I completely forgot to get a school excuse, a note for the flu shot, and an excuse to get out of jury duty next month. (Scheduled the same week as her final chemo.) So if I wind up sick with the flu, sitting in court with an expelled child by my side, you’ll know why. Oh, and he turned down my request for additional chemo, with a bemused, “I *think* this lady is joking” sort of look on his face.

But that’s not my good news ---- are you ready?!? OUR FRIEND CATIE HAD HER FINAL RADIATION TREATMENT YESTERDAY AND IS FINSIHED WITH HER MEDULLOBLASTOMA TREATMENT!!!! Or, as Kendrie so nicely put it, “Catie is finished with cancer!!!” (Of course, first she cried because Catie is finished and she’s not and that’s just not fair and why does she have to have cancer longer than anybody??? Then I reminded her that Catie *started* cancer before Kendrie did, so then it all balanced out and Kendrie was fine with it. Obviously, she’s six.)

Yep, Catie was diagnosed on her first birthday with medulloblastoma, a brain tumor. Now I don’t care who you are, that timing just SUCKS! Her mom Jenny and I met online, then our families got to meet in person at the 2004 Lighthouse Retreat, and Kendrie and Catie have been fast friends ever since. Honestly, I could not have been happier for them yesterday! I even shed a little tear on her behalf, although if you had asked, I would have insisted I had an eyelash stuck in my eye because everyone knows I am not the touchy-feely type and I don't cry in public.



After living for seven weeks at the Atlanta Ronald McDonald House, four hours from home, they were packing up the Explorer and heading home! We treated them to a gourmet lunch of McDonalds Happy Meals a) because it seemed fitting since it would be Catie’s last meal at the Ronald McDonald house b) because Kendrie really wanted the Chicken Little toy inside and c) because I only had $10 in my wallet and that’s the best I could do.


Kendrie, posing outside the Ronald McDonald house.



Catie is by no means finished, as she will continue to have speech therapy, occupational therapy, physical therapy, not to mention follow up visits, scans, bloodwork, physicals, Brain Tumor clinic, etc, etc. BUT NO MORE CHEMO!!! And she has made a public declaration that she is getting herself some hair for the first time ever, and Santa Claus is bringing her some bows and ribbons this Christmas!

Catie, dear, you deserve no less. All our best wishes to you and your beautiful family.

Please drop by Catie’s site and leave her a note of congratulations on finishing over two years of chemo, surgeries, and radiation to kick cancer’s butt!

Woo-hooo, Catie! You get the party started, girlfriend!

Take care, Kristie

PS. Thanks also for your encouragement and support for Keegan. The best news of all is that his bone marrow results from yesterday came back clear! Now they are still waiting on some other test results (that are inconclusive at this point .... talk about a head game for his poor parents) before charting their course …. Keegna, Audra, Mike and all, we are continuing to think of you guys during these stressful days!

WELL, *THAT’S* AN UNUSUAL CHOICE OF WORDS.

Monday, November 7, 2005 9:02 AM CST

Tuesday morning update

Well, in a very discouraging "See what I mean?" sort of update, I found out yesterday, just a few hours after posting the journal entry below, that our friend and fellow Scottish Rite patient Keegan has relapsed. We've been lucky enough to get together socially with Keegan, his mom Audra, dad Mike, and his brother and sisters a few times since they moved to Georgia. They are a great family and I feel extremely sad and frustrated for them at this set-back. They know for now it's a CNS relapse and Keegan will get a bone marrow aspiration done on Wednesday to see if he has relapsed in his bone marrow as well. Please join me in praying that has NOT happened .... please also visit Keegan's site to leave his family a note of encouragement and hope as they square up and make some decisions about his care ... Keegan's a fighter, like all these kids are, but that doesn't make news of a relapse any easier to take.

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


39 Days to Go

Wow, I had no idea there were so many people out there (ok, I admit, mainly girls) who have never seen Star Wars. No doubt, we’re the minority …. but, still, isn’t it great to know you belong? For the record, I have also never seen the Lord of the Rings trilogy or any of the Matrix movies …. although I am a huge Harry Potter fan and am holding my breath until the 18th when The Goblet of Fire hits the big screen-oh-my-gosh-I-can’t-wait!!! But I digress.

Also, to answer Ali's mom Marey’s question in the guestbook, yes, the Book Fairy did make her annual Halloween Night appearance at our house this year. For those of you unfamiliar with the Book Fairy (the Tooth Fairy’s more cerebral cousin, I believe) after trick-or-treating, that night, my kids can eat all the candy they want, as in “stuff your face until you make yourself sick” kind of binging. Then they choose five pieces of candy for the next day, and everything else goes back in their bag and is placed on the front porch. While they sleep, the Book Fairy comes and takes the candy, leaving new books in its place. The candy magically disappears (with just a few choice pieces “accidentally” left behind, hidden in a special “parent’s only” cabinet) and we don’t have to deal with the sugar high for the next month. I don’t remember where I originally heard the idea, but I think it’s a great one. I fear, alas, this will be our final year for the Book Fairy, as Kellen was overhead grumbling that next year, he’d rather have the candy. Damn.

So anyway, on to bigger and better things.

I was having a phone conversation the other day with a dear friend --- and by “dear”, I mean someone who actually visits this site, so I’ll be changing a few personal details so that person doesn’t recognize herself (or maybe his-self) in this journal. And if you *do* recognize yourself, please know that the following journal entry is nothing more than a personal observation about life, in no way meant to be complaining or gossipy or mean-spirited. (I save those qualities for my face-to-face conversations!)

Ok, so this friend and I were talking on the phone. This friend has great kids; lovely and healthy. So although she doesn’t “get” the childhood cancer journey from a personal perspective, she has been extremely supportive of our trial from the beginning. We were actually talking about another family that she knows, who has a child recently diagnosed with the same kind of cancer as Kendrie. This family’s cancer experience has been nothing like ours …. quite frankly, they are looking for a miracle at this point and it’s difficult for those around them to know what to say and do right now. Or at least that was the gist of our phone conversation. My friend was telling me she wants to help, but doesn’t know what to say to this family …… here’s her comment, verbatim: “It’s just so awful, and we’re all hoping for the best but fearing the worst ….. I remember when Kendrie was first diagnosed and it was such a shock that I didn’t know what to say to you, either. Of course, now that you know she’s going to be ok, I don’t feel weird bringing it up.”

Let me reassure you that I “get” the “feeling weird bringing it up” aspect. Even within our own cancer community, there are some families I am unsure with, because as much as you want to be supportive, you realize some families are more private than others. What is seen as helpful by one family might be considered intrusive by another. Somebody like me, who pretty much puts our whole life out here in this journal …. Obviously, I’m not that reserved. But I do appreciate the hesitation some people have and have it myself on occasion. But that’s not my point, nor what I found odd about her comment.

Rather, it was this: “Now that you know Kendrie’s going to be ok” ………………. Wow. OK. We do? Really? “Know”, as in, with confidence? 100 percent sure? We KNOW Kendrie is going to be ok? Hmmmm. What an unusual choice of words. That’s kind of a shocker to me, because despite the fact we are 39 days away from finishing treatment, I am nowhere near confident or convinced that she’s going to be ok. I’m hopeful. Optimistic. Prayerful. Encouraged. But do I KNOW? No, I don’t. And, for one of the (very) few times in my life, I was surprised into silence by her comment. (I know, write it down, it doesn’t happen very often!)

Believe me, I sincerely appreciate the optimism of the thought. But it’s so far from the truth that I felt compelled to address it. Maybe my “look on the bright side” attitude belies the panic and fear that is often in my heart. Just how DO I feel now that we are so close to the end of treatment? I guess the only adjective that comes to mind is “Scared Shitless” (is that really an adjective?) …. But since that’s how we’ve felt since the beginning, it’s not news. I mean, she’s doing so well on chemo, with relatively few side effects, and it seems to be keeping the leukemia at bay …. Well, why can’t we just keep her on it for a few extra months? Or years? Would her oncologist think I was crazy if I made that suggestion? Sure, I know there are long-term effects to worry about ….. growth issues, learning problems, secondary cancers. So she’s short, and needs a math tutor, who cares? If it’s keeping her alive and healthy, why not just keep it going?

There are so many analogies I’ve read and heard about ending cancer treatment and losing your safety net of chemo --- chemo is like carrying an umbrella; you started in the rain forest, and by the end of treatment, you are in the desert, but once you stop treatment and put away the umbrella, you are terrified it will rain again. It’s like a plaster cast you’ve had on a broken leg for the last twenty-six months; you *know* the bone is healed, but you’re still terrified to take the cast off, throw the crutches away, and actually put weight on the foot. What if it breaks again? Or (my personal favorite and one I made up myself) it’s the difference between going to prom in a strapless gown or one with spaghetti straps. Technically, you don’t *need* the straps to hold the dress up, but you feel a lot more confident with them there. What if you cut the straps (end chemo) and the whole contraption falls down around your knees???

I’ve heard several different time frames for when Kendrie will be considered “cured” …. The definition of cured being that the chance of the cancer returning is no greater than the chance of any healthy kid getting the same cancer. The number I hear most often is five years after she finishes treatment. Five years. That’s a long freakin’ time. Should I start my journal entries after December 15th with “1,725 Days to Go!” ??? Is that how long before we can relax? Would you guys even stick around that long?? So, for **only** the next five years is it that we have to worry she is at a greater risk for relapse. And, no chemo entering her system to battle any errant cancer cells that might still be lurking. Every bruise, every fever, every tired day, we worry that it’s back. It’s exhausting. I’m exhausted. But I’m also excited to get to that point. I feel eager to be done, and grateful she has done so well, and terrified and worried she will relapse, and feel annoyed for feeling worried, and feel guilty for feeling annoyed, and feel sad for feeling guilty …. Wonder if my middle name should have been Sybil?

All along, I’ve said, *this* is the crux of childhood cancer. The never-ending worry in the back of your head that it’s Not. Over. Yet. Yes, cancer stinks, and yes, the treatment for cancer stinks. But if your child comes through it (even better, relatively unscathed) and you could be guaranteed a lifetime of good health, you would consider that stink no more than an unfortunate step in a blob of doggie doo. It’s the fear and concern, like a black cloud that won’t go away, that is the big stink. The “Oh my gosh, did they hit a sewer line? No, kids, that’s the lovely rotten-egg aroma of natural sulfur” kind of stink that cancer parents everywhere feel. I’ve asked it again and again, *when* do we get to quit worrying?

When did the following families quit worrying?

Victor's family, Leah's family, Matt's family, Caleb's family, Thomas' family, Jonny's family, Colin's family, Alex's family, Clare's family, Spencer Rocket's family, Kevin's family, Chloe's family, Matthew's family, Isaiah's family, Ashley's family, Collin's family, Marcus's family, Julianna's family, Chris' family, Jake's family. And of course, there are many, many more.

Some had just barely started treatment when they relapsed, some were in the middle of treatment, some were soooooo close to finishing, some were finished with treatment --- by as much as three years! Now, some are done with their relapse protocols and doing great, some are still battling, and sadly, tragically, some have passed away.

So, I say, if there’s any kind of benevolent promise or prediction of which I’m unaware …. that lets me KNOW that Kendrie will be OK, I’m all ears. I would love nothing more than to KNOW she will be OK. In the meantime, I guess I’ll keep babbling my concerns to you guys. Caringbridge is therapeutic, if nothing else. Or maybe I’ll just try Prozac. If you get tired of listening to me, visit Julianna’s site today. She put up a pretty profound entry on the same subject and is looking for her normal, as well.

As always, when I really sit down and think about it, I’m feeling “crazy”. Thank you, Seal. And thanks to all of you for checking in as well. Especially if you made it to the end of this rambling entry.

Take care,
Kristie

QUOTE OF THE DAY:

Kendrie, after finishing up her lesson on Farm Animals at school: “Mom, did you know that baby cows get milk from their mother’s others?”

MAY THE FORCE BE WITH YOU (or with me, since I’m the one raising these kids, I’m probably the one who needs it the most)

45 Days to Go

I have a confession to make. I am probably the only person on the planet … or at least the only person on the planet not living in a cave or under a big rock, who has never seen any of the Star Wars movies. (Nor, might I add, do I have any desire to.) Oh, sure, I understand it’s some sort of phenomenon …. I had male friends in Jr. High who watched the first one (or is it the FOURTH one? I’m so confused) two hundred times in the theatre, but it just never did anything for me.

I realize that to die-hard Star Wars fans, that statement is nothing short of un-American. (Much like Blaine tries to tell me it is un-American that I don’t like Mexican food … but that is cultural argument for another day.) I don’t know the difference between Princess Leia and Princess Padme. I thought Obi-Wan Kenobi played power forward for the Celtics. I don’t know the difference between Luke Skywalker and Annikan Skywalker, although I have a sneaking suspicion they are somehow related (come on, with a name like “Skywalker”???)

I’m not sure whatever happened to Han Solo … who I used to call Han Sulu, until Blaine explained that was another character on another show altogether. I’m also very perplexed by the Luke/Annikan/Darth Vader connection ---- somebody is somebody’s father, or maybe his brother … or maybe it’s like in The Terminator, when Linda Hamilton’s son comes back from the future to save her from Arnold before she even gives birth to him ??? Or something like that? Do you see why I’m confused?

Anyway, you can imagine my delight when I discovered my children did NOT want to be superheroes for the third year in a row this Halloween, only to find out they all wanted to be Star Wars characters. Thank goodness **they** knew which ones, because if it was up to me, they would all have been cute little Ewoks or Yodas or something. But they had definite opinions and put their costumes together with pride and excitement. (Ok, I confess, they pointed to the ones online that I needed to order. No homemade costumes or originality here.)



In case you can’t tell (because Lord knows I can’t) Brayden is Padme, Kendrie is Annikan Skywalker (NOT Luke, she was quite adamant, and she was also adamant that I NOT order the attached fake braid for her to wear) and Kellen is Darth Vader. OK, even **I** know that one. So here they are, in all their Star Wars glory, although I think Brayden has herself confused with one of the Charlie’s Angels.




No costume would be complete without light sabers and a duel.




Making it even more fun were our friends Kody (also a Skywalker) and Ryan (Yoda, who someone mistook for Shrek??? What was *that* about?) and their parents, Princess Leia and a grown-up Vader, who are obviously WAY more fun than plain-clothes Blaine and me. I was unable to get in the photo because I was too busy smuggling Kit-Kats out of the kids’ bags.

But here you have it, the 2005 Halloween adventure. Hope yours was wonderful, as well.