Sunday, January 25, 2004


First of all, I have a few thank-you’s to toss around. One, to all the parents (and a few spouses, too) who let me add their Caring Bridge sites to our List of 100. Also, to the many wonderful people who took time to visit and sign guestbooks. I quickly came to realize that visiting all 100 sites was a teensy bit time consuming, to say the least. Attesting to this are my messy house, a mountain of dirty laundry, and the fact I fed my family Froot Loops for dinner last night. BUT! I made it to all 100 sites and signed all the guestbooks! (with a few exceptions; those non-CB sites that didn’t have guestbooks)

A couple of people have asked that I leave the list up a bit longer to give them more time to visit. No problem! I’ll leave the quiz up as well. Regarding the quiz answers, I have gotten a few private e-mails with “Answer Key” in the subject line, which I at first thought were people sending me their quiz answers. I soon realized they were actually spam because a) they looked like spam when I opened them, and b) they were quickly followed, from the same e-mail addresses, with lovely advertisements regarding the always-exciting male genitalia. So! If you want to send me the answers to the quiz, please put “CB” in the subject line so I don’t accidentally hyperlink myself to a Paris Hilton video. No offense to Paris, but there's a time and a place for everything. This just isn't it.

Remember, you have 24 hours more to finish up your 100, or get the quiz right, and I’ll make a donation to Caring Bridge in your name --- just let me know!

I’ve changed the front photo to one taken this weekend of Kendrie, in her new t-shirt sent by our dear friends Gary and Lisa D. from Illinois. Although you can’t see it in the picture, the logo on the shirt says “Scott AFB Blood Services”. This was the shirt Gary received for donating blood last week; he then sent the shirt to Kendrie, which I thought was icing on the cake (the cake being that he went down and donated blood in the first place!) Thank you, Gary and Lisa!

In the Put Up or Shut Up category, I also donated blood on Friday, and would like to encourage the rest of you to donate as soon as you can. I’ve heard some amazingly LAME excuses for why people can’t/won’t/don’t donate in the past few weeks. Whatever. I had a six-year window where four pregnancies and three tattoos threw me out of the running as well, but I’m back in the game now, every 56 days. Thanks to the rest of you who have taken the time, and gone to the effort. It means more than you can know!

Kendrie’s appointment on Friday went great. Blaine took her for the first time by himself (although did I accomplish anything productive that day by myself besides donating blood? No!) He was impressed, and said she handled all the chemo like a pro. In fact, while Nurse Mary was injecting her iv meds, Kendrie overheard the dramatic mud-pit scene from Homeward Bound on the tv in the playroom (you know, where Shadow falls in the mud pit and Chance and Sassy are begging him to get up and he falls back down…”I’m just too old” and then Chance jumps down there and says, “You got me this far, now I’m taking you the rest of the way; I WON’T let you give up!” …. Ah, I’m getting all goose-bumpy just thinking about it) ps. Can you tell we’ve watched Homeward Bound about a BILLION times in the past three months??? Anyway, Kendrie heard the movie and took off down the hall to see her favorite scene, never mind that she was accessed and receiving an IV push at the same time. Blaine said Mary just ran after her (what choice did she really have?) and finished up the meds in the playroom. Her counts were great, and we now have a two-week wait before her next visit, which will be the start of her Delayed Intensification Phase (boring medical details to follow in my next journal entry.)

So, one last silly story before I sign off for the evening. Tonight, the kids decided they wanted to put on a “show” for Blaine and me. Around our house, a “show” usually consists of the kids spending half an hour getting their costumes on and practicing in their bedroom (ah. Peace!) and then they stand in the living room and whisper to one another “what am I supposed to say?” and “I can’t remember what to do” all the while Blaine and I sit back, looking entertained and fascinated by their inherent dramatic acting skills. Tonight’s show seemed to be (I’m still not sure, but this was the gist of it) a heroine (Brayden) dressed in a red silk ball gown (looking suspiciously like her Halloween costume) trapped in a burning building, and two heroes (Kendrie and Kellen, blatantly using their Superman Halloween costumes, as well) who were supposed to (I think, this is where it gets a little confusing) fly around the room screaming at the top of their lungs before rescuing afore-mentioned heroine. Rescuing seemed to consist of pulling her out of the “building” (made of air) and then running around screaming some more. But half-way through, apparently Hero #2 (Kellen) forgot his lines and was just sort of running around squealing. In an attempt to prompt this Broadway-wannabe, Blaine said, “Kellen, what would Superman say in this situation?” and Kellen starts yelling at the top of his lungs, “CALL 9-1-1 !! CALL 9-1-1 !!!”

Oh my gosh. Let’s hope I’m never trapped in a burning building in need of a superhero.

Thanks for stopping by our website, and especially thank you for stopping by the other CB sites as well! Take care, Kristie

WORST THING ABOUT HAVING CANCER TODAY: Bactrim on the weeknds. Ick. Need I say more?

BEST THING ABOUT HAVING CANCER TODAY: With my dinosaur dress and matching hat, I was the cutest 4-yr old at church today!

Monday, January 19, 2004

100 Days of Cancer

100 Days of Cancer – how many is that in dog years??

Well, it’s been 100 days exactly since life pulled the rug out from under us and we received Kendrie’s leukemia diagnosis. So far I think we’re hanging in there pretty well, if you pay no attention to the empty, jumbo-sized bottle of Prozac on my nightstand. (Kidding, of course.) I’m not sure what the significance of 100 days actually means, if anything. I know Korean babies get a big celebration when they are 100 days old, but we’re not Korean. That’s where the age-old classic, “Bottles of Beer on the Wall” starts. Hmmmm. Maybe it’s just that I’m one of those obnoxious Americans who loves things divisible by ten and yet still doesn’t understand the metric system, so to my small, simple mind, day 100 should be marked in some fashion.

Since a party doesn’t seem appropriate – who wants to celebrate GETTING cancer after all, and my local party supply store was out of confetti anyway, I thought perhaps a list would be better. (Yes, you know me and my lists. They didn’t call me “Queen of the Post-It Note” at my last job for nothing!) What follows are 100 web sites for 100 kids (and a few grown ups, too) who have also been affected by this disease. Not all of the links are for people battling leukemia, specifically. And a few of the precious children listed have sadly lost their battle.

These are the sites of new friends we have “met” online, people who have helped support us on our journey so far; also some who have been gracious enough to visit Kendrie’s Caring Bridge site and sign her guestbook, then have sent me the links to friends’ sites, etc. Caring Bridge is a web-like community and once you get started, it’s easy to find sites of people that you quickly come to care about. I’m guilty of “surfing” CB sites at 2am, and figure if nothing else, it beats online shopping all night when I’m up and worried about things. I know my credit cards (and Blaine) thank me.

What I want to encourage you to do is visit as many of these websites as possible during the next week. I don’t care what method to madness you choose. Pick three or four random numbers every day and visit the sites that correspond. Visit everyone in your home state, or every place you’ve ever visited, or wished you could visit. Go alphabetically, go geographically, start at the bottom and work your way up --- it really doesn’t matter. What’s important is to go to the sites and sign the guest books. Believe me when I tell you how encouraging the notes are. If you don’t know what to say, a simple “best wishes from (enter home state here)” is fine. If you want, just tell them we sent you and say hi, nothing else required.

I plan to leave this list up for one week, and anyone who manages to visit all 100 sites during the week wins a special prize. And everyone who can complete the quiz at the end will also win a prize. I can practically HEAR you all holding your breath in anticipation!!! -------- Ok, ok, so it’s not really a prize, but I will make a donation to Caring Bridge in you or your child’s name. I’m personally going to visit all 100 sites and sign the guest books. I don’t care how much 2am surfing it takes!!

I’d also like to mention one CB site that I left off the list, that of Marcus, a very special little boy on our list serve who passed away last week. My heart goes out to his mother, and I hope she knows how much the rest of us on the list are thinking about her.

Thanks to all, and best wishes,

Kristie ps. I’d love to think I’m so computer-literate that all the links in this list work perfectly, but come on. It’s ME we’re talking about! So if you find a link that doesn’t work correctly, please let me know and I’ll fix it as quickly as possible. Thanks! Remember, quiz at the end!

1. Holly in NY

2. Madie in GA

3. Dianne in MD

4. Duncan in TX

5. Serena in CA

6. Kody in FL

7. Elijah in IA

8. John in PA

9. Lindsay in IL

10. Colin in WI

11. Adam in TX

12. Tyler in OK

13. Melanie in MI

14. Aidan in WA

15. Cheyenne in TX

16. Stacey in TX

17. Jill in NJ

18. Nicky in OH

19. Bryan in CA

20. Maxie in VA

21. Ashley in TN

22. Wil in MI

23. Julia in MD

24. Lindsey in VA

25. Emily in TN

26. Isaiah in MI

27. Cherry in TX

28. Celeste in PA

29. Katie in Canada

30. Chad in WA

31. Tyson in FL

32. Isaac in WA

33. Jonny in MI

34. Alex in CA

35. Francesca in NY

36. Sammy in TX

37. Maddie in MN

38. Mitch in FL

39. Brandon in MD

40. Ronnie (Gooch) in CT

41. Amanda in PA

42. Fisher in VA

43. Andy in IN

44. Chad in NV

45. Julianna in Canada

46. Spencer in CA

47. McKenzie in WV

48. Houston in TX

49. Andrew in CA

50. Dani in IA

51. Logan in FL

52. Kristen in IL

53. Chris in MD

54. Marina in FL

55. Kevin in VA

56. Gemma in Italy

57. Jake in FL

58. Ashley & Ryan in WI

59. Zachary in FL

60. Aizee in UT

61. Jessie in PA

62. Conor in Canada

63. Noah in TX

64. Cameron in LA

65. Chris in FL

66. David in FL

67. Palmer in GA

68. Jessica in PA

69. Linus in AZ

70. Bobby

71. Abby in OH

72. Craig in TN

73. Tayden in SD

74. Jason in MD

75. Lakota in MN

76. Alex in SC

77. Will in NC

78. Jordan in GA

79. Emma in OH

80. Dustin in TX

81. Katia in FL

82. Leah in VA

83. Chloe in MO

84. Jonathan in MN

85. Carter in IL (patient name: cartercarepage)

86. Joey in PA

87. Noah in IA

88. Caleb in WA

89. Michael in NY

90. Jacob in GA

91. Grant in ID

92. Caleb in TN

93. Joshua in TN

94. Luke in FL

95. Sarah Anne in AL

96. Lindsay in NY

97. Ashley in IL

98. Hannah in CA

99. Maddy in ND

100. Lauren in TN

(and one extra from an Angel named Matthew, to wish everyone luck)

101. Matthew in MO

100 DAY QUIZ (probably favors ALL-parents, since we know one another’s kids better through our list-serve, but everyone should give it a shot!)

1. Who is a Philadelphia Eagles fan?
2. Who has a dog named Shadow, er, Sammy?
3. Whose site recently went over 384,000 hits?
4. Who enjoys dressing up like superheroes and got a scary looking Hulk costume for Christmas?
5. Who has a brick laid in his honor at the Soccer Hall of Fame in NY?
6. Who has been in the ring, with THE ROCK?
7. Who loves collecting fancy pencils and pens?
8. Who lives less than ten miles from my parents? (Ok, so those of you who actually KNOW me have a slight advantage with this one.)
9. Who currently loves Crispix cereal, in a steroid-sort of way?
10. Who is taking a bead stringing/jewelry making class?
11. Who had the fire department show up at his last birthday? (And no, not to put out the fire made by the candles on his cake!)
12. Who is our current Karaoke King?
13. Who recently got her drivers license?
14. Who had fun swimming with the dolphins?
15. Who loves playing soccer in her Tinkerbell costume?
16. Who is a competitive swimmer? (this might be hard if you don't already know, since I think her mom took the photo off her web site)
17. Whose doctor has nicknamed this patient, “Wild Girl”?
18. Who is our biggest Frosty the Snowman fan?
19. Who has a diabetic cat named Lulu?
20. Who is the Navy Blue Angels #1 fan?
21. Who just got a new puppy named Bella?
22. Who just won 3rd place in his Boy Scout Pinewood Derby?
23. Who has the “newest” CB site? (Less than one week old!) (actually, there’s a tie between two people, as best I can figure)
24. Who just recently lost his first tooth?
25. Whose mom should really turn her mind to more productive things?

Monday, January 12, 2004

Warning - boring medical stuff straight ahead, Captain!

Howdy and good evening to all of you! Kendrie and I returned this afternoon from what might have been the smoothest clinic visit yet. It was a pretty darn good day, if I say so myself. We stayed at the hotel overnight in order to arrive bright eyed and bushy tailed (well, if we actually HAD tails, that is) at her 8am appt. Today’s clinic visit included her IV drugs Vincristine and Methotrexate, Zofran orally, plus another dose of Methotrexate in her spine.

***WARNING – Boring medical stuff straight ahead, Captain!*** Several of you (mainly friends of mine of childbearing age) have asked what is the difference between a spinal tap (aka LP; lumbar puncture) like Kendrie receives and the epidural we all beg for during labor. (ok, I admit it, *I* was the one doing the begging!) To explain it, Kendrie lays on her side in a “nose to knees” position. I put a numbing cream on her back an hour beforehand, and she is given “sleepy” meds through her port to help her relax. Not all clinics routinely give this medication, especially to older kids, but I’m so thankful ours does. Next, the doctor sterilizes the area, and then inserts a needle between two vertebrae where CSF (cerebrospinal fluid) is found. The CSF drips out of the hollow needle into a container, and after a small amount is collected, a syringe is attached to the needle and the chemo medication is slowly injected. Then the needle is removed, and the CSF is sent to the lab to see if any cancer cells are present. Kendrie has to lie flat for half an hour afterwards, but they dim the lights and play soothing music and all told, it’s a nice little nap. Some days I wish they had another table for me, too, ha!

So, like I said, it went very well today and since the clinic didn’t call (in a demented “No news is good news” game that we play every time she has a spinal) that means the fluid was clear; no cancer cells present. Her CBC showed her counts are extremely good. In fact, protocol calls for a two week break from chemo after her next visit in ten days, but the nurse practitioner said if Kendrie’s counts remain as high as they are, they might not have her wait the two weeks but move right on to the next phase. Her oncologist sat down with me for a few minutes before the LP and explained (more boring medical stuff ahead!) that some kids like Kendrie seem to tolerate high doses of chemo extremely well (as evidenced by the fact her counts haven’t fallen.) So in her case, it appears fortunate that she was randomly assigned to the harshest arm of treatment for her clinical trial, as a less aggressive arm might not have been enough for her. Of course, it’s also possible we could go back for her next appointment and her counts could be in the toilet and that’s all a moot point, but it’s certainly a good feeling to know that her bone marrow appears to be working just fine, producing the right (good) kinds of cells, and that her immune system isn’t highly compromised right now. I don’t know what the heck we’re doing that’s making all this work so well (besides praying constantly) but we’re sure going to keep doing it! (read between the lines – blatant solicitation for continued prayers from all of you as well!)

So, in a lame attempt to keep you feeling “close” to my goofy kids, I thought I would share with you the funniest thing each of them said to me this week:

Brayden: “Mom! You know the movie ‘Cat in the Hat’?? Did you know they made a BOOK out of it, and we have it in our school library!?!”

Kellen: (we were discussing whether he got to go outside for recess, as the weather has been a little cold and wet here) “yeah, but only the kids with flak jackets got to go”. I had been a little distracted, but suddenly perked up, “Flak jackets? FLAK jackets? What the hell kind of zero tolerance policy is that???” and he gave me this bemused, 5-yr old look and said, “F.A.T. jackets, mom, only the kids with warm, fat jackets got to go.”

Kendrie (having somehow combined all our favorite terms of endearment for one another – doofus, dork, and goofball): Now walks around saying “You’re a DORF!” Unfortunately, I immediately thought of Tim Conway, ie, Dorf on Golf, and made the mistake of bursting out laughing the first time she said it, which of course encouraged her, so now it’s like a Celine Dion song that’s been played into the ground and to be truthful, isn’t so cute and funny anymore but a little annoying and wearisome. (sigh) Do you think she could be dyslexic???

Not so funny thing Kendrie said to me this week: “Do we have to go to the mall and walk again? You’re too slow!” I didn't have the heart to tell her I LET the elderly mall walkers pass me to make them feel better! (ok, not really, but cut me some slack; I'm pushing her in the stroller, as well! OK, ok, I'm just fat and slow, but I'm trying!)

On a more serious note, any of you who have a minute to spare, please stop by the following CB site and offer some words of encouragement to this family. Their daughter Ashley has the same kind of leukemia as Kendrie, but relapsed this past October. Although I cannot even bear to imagine what they are going through, their 21-month old son was also diagnosed with leukemia this past week. I found myself thinking, “There is no way that I could handle that” and then remembered how much I hate people saying that to me, so I shut up. Instead, I’ll concentrate my energy on saying prayers for their whole family. Ashley’s Page

“Ouch! Crap! What are you doing?? Stop it, that HURTS!!” Do you guys know what that sound is? It’s the noise coming from the DEAD HORSE I am beating!!! Several of you have wonderfully let us know (most recently, big thanks to Nadine M!) that you have donated blood, but CNN released a report today that the US Blood Banks are in a critical condition. I am putting a small excerpt of the article below, just to give you an idea and encourage you to donate. Blaine, who has donated regularly for years, received craptastic news when he was told last week that his bout with cancer earlier this year renders him ineligible as a blood donor for FIVE YEARS. Although he was told there has never been a documented case of a person “catching” cancer from a blood donation (and especially in his case where the entire tumor was removed with no chemotherapy or radiation) they said public fear regarding the blood supply means they won’t even take his. It’s a crying shame, to be that desperate for blood and not be able to take from someone willing to give.

So PLEASE, if you are eligible, go donate. Give up an hour of your time and possibly help save someone’s life. I really like the idea another parent on my list serve had --- instead of giving something UP for a New Year's Resolution, resolve instead to simply "give". I was planning on going again to donate (remember last time I tried Kendrie threw up on the floor, ick!) but given the crises regarding the blood supply, I am going to talk to Kendrie’s oncologist first. She and I are the same blood type and I want to make sure I could be available to direct donate to her, first. If he says it’s ok, though, I will be going down later this week to donate. It’s scary to think there simply isn’t enough blood out there. And remember, it's not just kids like Kendrie who need blood. The next car accident victim needing blood could be your son or daughter. Don’t make me beat this poor dead horse anymore.

@@@WASHINGTON (Reuters) -- U.S. blood banks appealed Monday for immediate donations as supplies dwindled throughout the country and some hospitals canceled non-emergency surgeries.

Blood inventories nationwide "have dropped well below a safe and adequate supply," according to a statement from the American Association of Blood Banks, the American Red Cross and America's Blood Centers.

Donations were falling in part due to holiday travel, bad weather in the West and a decline in blood drives, the organizations said. Certain blood types were nearly depleted, forcing some hospitals to postpone or cancel non-emergency surgeries, they said.

"If blood supplies do not immediately increase, patients, accident victims and those whose lives depend on regular transfusions, are at risk for not getting the blood they need," Health and Human Services Secretary Tommy Thompson said in a statement.

A national tracking system showed less than a two-day supply of blood, said Michelle Hudgins, a spokeswoman for the American Red Cross, which collects about half of the nation's blood. Blood banks prefer to have at least a five- to seven-day supply on hand, she said.

Millions of pints of donated blood are used each year to treat surgical patients, organ transplant recipients, accident victims and others. Blood has a shelf life of 42 days, so supplies need to be replenished continually.

Only about 5 percent of eligible Americans actually donate blood.@@@

So please, GO DONATE!!! Really, it's an hour of your time and could make a huge difference!

Thanks so much for stopping by, sign the guestbook, take a quick peek at the photo album (new photos added today!) and have a great week! Much love to all, Kristie ps. Thanks, Michelle T, for dinner tonight, it was so nice to come home to!


WORST THING ABOUT HAVING CANCER TODAY: Yeah, that spinal tap went pretty well, but when I came to, there was a sore spot on my leg and an empty flu shot on the counter --- AGAIN!! IT'S A CONSPIRACY!!!

BEST THING ABOUT HAVING CANCER TODAY: Well, duh, that's a no-brainer. The treasure chest and the Winnie the Pooh puzzle I got afterwards!

Tuesday, January 06, 2004

"Kids that are bald-headed don't go to school"

Well, thanks to the timing of this cycle of chemotherapy, this week is the first in quite some time that hasn't included a clinic visit --- so what the heck am I supposed to write about? Heaven knows no-one in our family has done anything funny enough, or cute enough, or interesting enough to warrant comment ........... oh, wait. There were a few interesting questions raised by our very own girl-genius (NOT) Kendrie!

Situation #1: We were discussing our trip to Atlanta last week, and getting to see our cousins who live there. Kendrie has a 5-yr old cousin named Shelby and when I mentioned her name, Kendrie said, "Shelby lives in Atlanta?" and I said yes, and Kendrie said, "does she have a port like me, or get needles in her arm?" and I said "Shelby doesn't have a port OR get needles" to which Kendrie replied, (in a "you are so STUPID Mom" tone of voice), "Well, she lives in Atlanta, so she has leukemia like me!" --------I guess when your cancer clinic is in Atlanta and your mom and dad talk about going to Atlanta once a week, you assume everyone who lives there must have cancer, just like you!

Situation #2: We were watching the beginning of the Sugar Bowl and they were showing pictures of all the starting players. Every few players, Kendrie would blurt out, "Hey! He has leukemia just like me!" and finally I said, "Kendrie, what makes you think they all have leukemia?" and she replied (again with the stupid-mother tone, which is getting on my nerves if you want to be honest about it) "Well they're all bald-headed like I am!" Hmmm, if this reasoning does indeed prove true, it's bad news for Grandpa McClung and Grandpa Escoe! And football players everywhere, please reconsider shaving your heads --- you're confusing my daughter!

and finally, Situation #3: Brayden and Kellen return to school tomorrow; their first day back after the holiday break. We were talking about going back to school (my lame attempt to prepare them for the shock of having to actually get up and get ready for school in the morning, as opposed to playing on the computer until lunchtime) and Kellen asked if Kendrie was going back to school tomorrow also. Although Blaine and I had decided to keep her home with me for the rest of this year, we hadn't really talked about it out loud, so I was surprised to hear her explain to him (using a "you're so stupid, Kellen" tone, which hey, at least it wasn't directed at me this time) "no, kids who are bald-headed don't have to go to school" I hope she forgets that idea come time for school next fall, when she's still bald-headed, but IS going!

Thanks to all of you for checking in, and especially for signing the guestbook. We love reading the messages and want to say thanks, especially if you sign often. The more, the better! Happy New Year to all! love, Kristie

KENDRIE'S 2004 NEW YEARS RESOLUTION: "Well, let's see. I don't need to lose weight, or organize my closet, or throw myself into my career, especially since I don't really have a career (unless you count printing Stanley activity sheets on the computer). Hmmm. Maybe, with the help of my family, friends, doctors and nurses, I'll just concentrate on kicking a little ALL ass!"

Friday, January 02, 2004

Hello, 2004. So far, you suck.

Kendrie had a clinic appointment today and everything went fine. Her counts are starting to drop a little from the chemo drugs, which is expected. They are still high enough at this point that we can continue to get out of the house. She is scheduled for another lumbar puncture in ten days, so we'll watch the counts and see what happens.

I was all set to update about the cute thing that happened today (ok, at least I thought it was cute) --- when Kendrie chose Blaine's camouflage, Elmer-Fudd hunting cap with extended ear flaps to be her "hat of choice" for the clinic visit. It was huge on her head and looked hysterical. Of course, it being a pediatric oncology clinic, they thought it was funny.

Then, right when I sat down to update this journal I got a gut-wrenching reminder that leukemia is not funny. Nothing about this &## disease is funny. An adorable little girl on my support list, Julianna, had a leukemia relapse in her central nervous system this week. Her dad waited until tonight to let the rest of us know .... her family was waiting on the results of her bone marrow test, which thank the Lord, showed no relapse in her bone marrow.

I think I have felt a connection to Julianna and Terry right from the beginning, for a couple of reasons. Julianna is close in age to Kendrie (she's 3), she's unbelievably cute (like I think Kendrie is), Julianna was diagnosed on Kendrie's birthday, they have the same ALL with the same prognosis, and Julianna's Caring Bridge site was the first one I stumbled across that let me know it was ok to poke a little bit of fun at ourselves and this disease. I have been so inspired by their journal that I've put a link to it in Kendrie's journal in the past, encouraging all of you to read it.

Tonight, I'm putting the link here again, so you can visit their site and please sign their guestbook. I speak from experience when I say that even messages from people we don't know can be encouraging. So please take a minute to offer a word or two of support to this brave little girl, as she and her family prepare to kick her fight against leukemia into over-drive.

Julianna Banana's Home Page

thanks, Kristie