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
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KENDRIE'S PERSPECTIVE:
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!
Sunday, January 25, 2004
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?
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!
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KENDRIE'S PERSPECTIVE:
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!
***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!
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KENDRIE'S PERSPECTIVE:
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
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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!"
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
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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
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
Tuesday, December 30, 2003
Kindness Strikes Again
Howdy, and Merry Belated Christmas to all of you! I hope everyone had a fabulous holiday, filled with good tidings, good cheer, love, happiness, joy, peace............ all those things I was unsuccessfully searching for on Christmas Eve, ha! Our Christmas morning was lots of fun; the kids slept in reasonably late (7am) then we had the hour of gift-opening frenzy, the hour of peace while all toys were opened and closely examined (the hour we parents enjoy best) the hour of losing all the parts to all the games, rendering them useless the first day, and then the hour of fighting over whose toys are whose and refusing to share.
My personal philosophy is that on Christmas Day, kids shouldn't have to share their new toys if they don't want. So I try to give them 24 hours of "ownership" before Kendrie's motto of "finders, sweepers, losers, leapers" takes over and the free for all kicks in.
The biggest hit this year appears to be the standing microphone (with actual working amplifier!) that came with Kellen's new guitar. Kendrie derived great pleasure from yelling into it, at least 3,000 times that day, "Hey! Who ordered the poo-poo platter?" and then collapsing on the floor in a heap of giggles. Running a close second for airplay was the Escoe children's trio-choir, performing (about 2,900 times) the popular holiday classic, "Diarrhea", which their father so tactfully taught them. In case you are sadly unfamiliar with this holiday favorite, here are the lyrics, so you can teach your own children:
"If you're sliding into first, and your shorts are about to burst, diarrhea, diarrhea.
If you're sliding into home, and your shorts are full of foam, diarrhea, diarrhea.
If you're sliding into third, and you lay a juicy turd, diarrhea, diarrhea."
There are even sound effects, in addition to the timeless lyrics, but we won't go into that.
So you can imagine about how my afternoon went, listening to that over and over and over. I had to put my foot down when I discovered them dragging the microphone outside to "give the neighbors a concert." If ever a family were to be evicted by the homeowners association, I'm sure the Diarrhea Classic would be a good enough reason.
I want to say thanks to all the people who signed Kendrie's guestbook after reading about my pathetic Christmas Eve and shared their own humorous sagas with me. I guess it's good to know that those Hallmark moments are just as elusive for others, and it probably makes us more normal! I love when people, despite being faced with a life situation like this, can still laugh at themselves. Check out the websites of some of our new friends, and wish them Happy Holidays as well:
Katie's Page Be sure to read her mom's journal entry dated Dec 15th --- another great edition of the Crap Sandwich Chronicles!
Elijah's Page Wonderful family!
Emma's Page Another wonderful family!
Kody's Story An amazing site, and an amazing kid! (love the tattoo, Kody!)
I mentioned in a previous journal entry about the two special gifts we received this Christmas, the notices from Caring Bridge and the American Red Cross that donations to these two wonderful organizations had been made in Kendrie's name. Another reminder--- that sometimes the most wonderful gift is a gift of yourself--- came today in the mail ---- a notice from Locks of Love that a donation had been made in Kendrie's honor by our friend Katherine B. in San Pedro, California (LA Air Base.)
Locks of Love is a charitable organization that takes donated human hair and provides hair prosthetics for children with long term medical hair loss, free of charge or on a sliding scale. It takes four months, and a dozen donations, to make a single wig. The organization only accepts donations that are 10 inches or more in length, so this was no little thing that Katherine did! If you would like more information about Locks of Love, their web site is www.locksoflove.org. And thank you Katherine, for such a selfless, generous donation!!! See? Kindness strikes again!!!
much love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I can't even step outside the house for one second without my mom yelling at me to put a stocking hat on my bald head!
BEST THING ABOUT HAVING CANCER TODAY: My cool new Kim-Possible stocking hat! BooYa-!
My personal philosophy is that on Christmas Day, kids shouldn't have to share their new toys if they don't want. So I try to give them 24 hours of "ownership" before Kendrie's motto of "finders, sweepers, losers, leapers" takes over and the free for all kicks in.
The biggest hit this year appears to be the standing microphone (with actual working amplifier!) that came with Kellen's new guitar. Kendrie derived great pleasure from yelling into it, at least 3,000 times that day, "Hey! Who ordered the poo-poo platter?" and then collapsing on the floor in a heap of giggles. Running a close second for airplay was the Escoe children's trio-choir, performing (about 2,900 times) the popular holiday classic, "Diarrhea", which their father so tactfully taught them. In case you are sadly unfamiliar with this holiday favorite, here are the lyrics, so you can teach your own children:
"If you're sliding into first, and your shorts are about to burst, diarrhea, diarrhea.
If you're sliding into home, and your shorts are full of foam, diarrhea, diarrhea.
If you're sliding into third, and you lay a juicy turd, diarrhea, diarrhea."
There are even sound effects, in addition to the timeless lyrics, but we won't go into that.
So you can imagine about how my afternoon went, listening to that over and over and over. I had to put my foot down when I discovered them dragging the microphone outside to "give the neighbors a concert." If ever a family were to be evicted by the homeowners association, I'm sure the Diarrhea Classic would be a good enough reason.
I want to say thanks to all the people who signed Kendrie's guestbook after reading about my pathetic Christmas Eve and shared their own humorous sagas with me. I guess it's good to know that those Hallmark moments are just as elusive for others, and it probably makes us more normal! I love when people, despite being faced with a life situation like this, can still laugh at themselves. Check out the websites of some of our new friends, and wish them Happy Holidays as well:
Katie's Page Be sure to read her mom's journal entry dated Dec 15th --- another great edition of the Crap Sandwich Chronicles!
Elijah's Page Wonderful family!
Emma's Page Another wonderful family!
Kody's Story An amazing site, and an amazing kid! (love the tattoo, Kody!)
I mentioned in a previous journal entry about the two special gifts we received this Christmas, the notices from Caring Bridge and the American Red Cross that donations to these two wonderful organizations had been made in Kendrie's name. Another reminder--- that sometimes the most wonderful gift is a gift of yourself--- came today in the mail ---- a notice from Locks of Love that a donation had been made in Kendrie's honor by our friend Katherine B. in San Pedro, California (LA Air Base.)
Locks of Love is a charitable organization that takes donated human hair and provides hair prosthetics for children with long term medical hair loss, free of charge or on a sliding scale. It takes four months, and a dozen donations, to make a single wig. The organization only accepts donations that are 10 inches or more in length, so this was no little thing that Katherine did! If you would like more information about Locks of Love, their web site is www.locksoflove.org. And thank you Katherine, for such a selfless, generous donation!!! See? Kindness strikes again!!!
much love, Kristie
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KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I can't even step outside the house for one second without my mom yelling at me to put a stocking hat on my bald head!
BEST THING ABOUT HAVING CANCER TODAY: My cool new Kim-Possible stocking hat! BooYa-!
Wednesday, December 24, 2003
"LEUKEMIA IS THE GRINCH THAT STOLE MY CHRISTMAS SPIRIT (or at the very least, spit in my eggnog.)"
CHRISTMAS EVE, 2003
We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.
First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.
We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.
This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???
Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")
Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:
Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"
And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?
I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???
If anyone finds it before morning, please tuck it into my stocking.
Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
Kristie
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.
We are back, safe and sound, from an uneventful clinic visit and fun family get-away to Atlanta. Since the older two are out of school for the break, and our trip home for the holidays was cancelled (no desire to put an immuno-suppressed child on an airplane, aka flying petri dish, to our home state (OK) which has reached epidemic flu status) we traveled as a family to Atlanta for Kendrie's appointment, and took time to do a few fun things in addition.
First, BIG thanks to the Dallas branch of our family who let us use their home as a bed & breakfast and took time to have dinner with us, and guide us to the drive-through light display at Lake Lanier. We also spent time both afternoons playing at local parks which the kids enjoyed greatly. Our home town here in GA is sadly lacking in the public parks department -- the few we have are still sporting death-trap playground equipment from the 1970's. So parks with new equipment, duck ponds, walking trails, and public restrooms that are not only clean, but unlocked (!) were quite a treat.
We got back late last night and spent today relaxing and preparing for the BIG DAY tomorrow. I'm not quite sure what went wrong, nothing went outstandingly wrong, but this Christmas Eve was just not the special time I had envisioned. When Kendrie was first diagnosed, I made big promises to myself that once she came home from the hospital and things settled down to normal, I would appreciate the small things, hug her and Brayden and Kellen a little tighter, live for the moment, etc. You know, "not sweat the small stuff". Well, much like a new bride promising to keep a clean house and prepare a hot meal for her husband every night, my promise went right down the toilet in a matter of weeks.
This vision I had of the perfect Christmas, of our entire family standing around the beautifully decorated tree with hands held, singing joyfully, loving one another with pure happiness in our hearts and voices ............. yeah, right, like THAT was going to happen???
Tonight started out well enough --- the kids were freshly bathed and dressed in their new Hanna Andersson PJ's, ready for the photo shoot I had planned. We sprinkled reindeer food outside, arranged cookies for the Big Guy, took some photos..... oops! Had our first episode of chemo-induced nausea and Kendrie threw up on her new PJ's... that's ok, cleaned her up, she felt better, took some more photos, maybe that's where I went wrong and stretched their patience a little far. Next thing I know, I'm getting images of rolling eyes, frowns, kids refusing to look at the camera. (as a scrapbooker, nothing makes me madder than uncooperative photo subjects, and then I find myself threatening along the lines of "if you want to find a single present under that tree tomorrow with your name on it ...............")
Admitting defeat with the photos, but not wanting to give up on my picture-perfect evening, I went into the kitchen to make hot cocoa while Blaine prepared to read them A Christmas Story. This is pretty much how things went:
Blaine: "God sent the angel Gabriel to Mary."
Kellen: "She's touching me!"
Brayden: "I can't see the book"
Kendrie: "Hey, he got more marshmellows than me!"
Blaine: "You will give birth to a son and you will name him Jesus."
Brayden: "Make him scoot over!"
Kellen: "I don't like this cocoa. Can I just have milk?"
Kendrie: "I want his marshmellows if he's not going to eat them"
Kellen: "I don't like the cocoa but you cannot have my marshmellows"
Brayden: "would you two hush so I can hear Dad??? Go ahead, Dad"
Blaine (voice is getting strident): "Joseph went to Bethlehem with Mary"
Kellen: "Aaah! She spilled my drink!"
Kendrie: "Move over so I can see, too!"
Blaine (starting to get upset): "and so they stayed in a manger because there was no room at the inn"
Brayden: "they did not stay in a manger. They stayed in a stable. My Sunday School teacher told me that."
Kellen: "She is still touching me but with her foot this time!"
Kendrie: "Kellen, did you know that I threw up earlier?"
Blaine (practically yelling now): "She gave birth to baby boy and wrapped him in strips of cloth!!! Strips of cloth, I'm telling you!!!!!!! Would you guys hush and listen to the story?!?!?!"
Kendrie: "this is boring. I'm going to play" (gets up and leaves the room)
Kellen: "well I don't want to stay here, either" (also gets up and leaves)
Blaine: "Brayden, would you like to hear some more?"
Brayden, "um, no. Thanks anyway. Can I have more cocoa?"
And I'm sitting on the sofa wondering what just happened to my vision of the perfect Christmas Eve?
I keep reading about these people who appreciate things so much more after their child is diagnosed with a potentially fatal illness. Wouldn't you think Christmas is the one time of year I shoulda/coulda/woulda feel that same appreciation? How did Christmas become a list of to-do chores, all made more difficult because of Kendrie's condition? Where the heck is my Christmas spirit???
If anyone finds it before morning, please tuck it into my stocking.
Thanks so much, and happy &@@&*@&&@#!@#$ holidays,
Kristie
ps. I am only kidding, in case any of you are rushing to look up the phone number to a local mental health professional.
Saturday, December 20, 2003
Christmas Letter 2003
Ho, Ho, Ho, and a MERRY Christmas! The only thing that makes me happier than opening ridiculously expensive Christmas presents (which let's be honest, my husband is in the military so *that* rarely happens, ha!) is opening the cards, letters and pictures that everyone sends during the holidays. As you all know, I am a HUGE fan of the bulk Christmas newsletter and love reading them, and sending them, each year. For those of you we have met online, I thought I would post our family Christmas letter here as a journal entry ..... my version of a virtual holiday letter to all of you!
Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!
ANNUAL FAMILY CHRISTMAS LETTER
December 2003
Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:
2003 WAS NOT A GREAT YEAR FOR OUR FAMILY !!!
I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.
Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:
The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.
Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)
The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.
Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.
I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.
Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.
Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.
Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.
At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.
I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.
Two of the best holiday cards we've opened this year weren't the kind we normally receive, but touched our hearts more than you can know. From our dear family friend Bruce G. in Connecticut; a note from the American Red Cross that he donated blood in honor of Kendrie, which is truly a gift of life this holiday season; thank you Mr. G! And from my wonderfully kind friend Deb B. in Cincinnati; a notice that Deb and her husband Pete made a donation to Caring Bridge in Kendrie's name. I think this web service, which has allowed us to keep in touch with everyone in such great style, is an amazing service. I'm truly touched that Deb and Pete made such a kind, generous gesture. Thanks to you all!!!
ANNUAL FAMILY CHRISTMAS LETTER
December 2003
Well, I’ve sat down several times to write this Christmas letter, and can’t seem to find a positive way to start, so let me begin by being honest:
2003 WAS NOT A GREAT YEAR FOR OUR FAMILY !!!
I could be even more brutally honest, but I don’t think there is a need for profanity during the holidays, so we’ll just leave it at that. There were some highlights, however, in between our lowlights of the past year, so I’ll do the best job I can to mention those and ensure this is not the single most depressing Christmas letter ever written.
Rather than “Spring, Summer, Fall and Winter”, the seasons we experienced this year are better described as “Good, Bad, Great, and Really, Really Crappy.” So let’s start with GOOD:
The year began well enough; I had just started my second surrogate journey and was excited to discover I was carrying twins. Our kids were enjoying school; work was going well for Blaine, life seemed pretty GOOD at this point. Then, out of the clear blue March sky came the news that Blaine’s head had been invaded by, of all things, a tumor. I knew he was harboring some fantasies about life as a professional hunter, but had no idea he was harboring cancer! He underwent two surgeries to have the tumor removed and spent over two months off work. He assured me that the more time he spent fishing the quicker his recovery time would be. Apparently the bump on my head is from where I fell off the turnip truck yesterday, but I went ahead and gave him the ok to buy a new fishing boat and hoped for the best! Even now, he still is having reconstructive work done, and will be for some time, but for the most part we sat back afterwards and thought, “whew! Was that a lousy thing to have to go through or what? At least the BAD part of our year is out of the way.” Little did we know our “or what” was still ahead.
Summer began and we settled back down to normal. Spent lots of time at the pool, traveled to NY/NJ and Ohio to visit friends, and waddled around town waiting for the twins’ arrival. We enjoyed the time off, despite the occasional, frequent, daily, ok, let’s be honest, INCESSANT, non-stop bickering between the children. I found myself quoting Rodney King on more than one occasion, pleading for them to all just get along! In fact, the experience of our first summer break between school years led me to the decision I should write my own parenting book entitled: “Because I said so, that’s why” OR “I’m going to have a heart attack if you don’t stop that” OR “Five lousy minutes of peace, is that too much to ask?!” OR “Do you want to spend the rest of your life in time-out, because you’re sure headed that way!” (Cast your ballots for the title of your choice.)
The GREAT highlight of the summer was the arrival of Benjamin and Jonah on August 20. Easy pregnancy, easy delivery, awesome experience yet again. How did I get so lucky? Born at 38 weeks, they are handsome, healthy boys and are doing great back at home with their wonderful family. We enjoyed their parents and grand-parents visit here to Georgia to await their birth so much! I’m blessed to receive pictures and updates quite often and can’t wait to see them again.
Then, school started, this stay-at-home-mom got her groove back (who knew the endless cycle of class parties, field trips, volunteering at school would be so, well, endless?!) and then REALLY, REALLY CRAPPY hit us right between the eyes. We didn’t even see it coming. I won’t go into great detail because let’s be honest; if you’re a good enough friend that you’re on our Christmas card list, then you already know about Kendrie’s leukemia diagnosis. Hands down, no contest, darkest day of our life. Some days it’s easy to keep our heads above water, other days I feel like we’re treading water in the Sea of Optimism with both hands tied behind our backs and a fifty pound boat anchor wrapped around our waists.
I can never in a million years thank all of you for your support during this time. And, going back six months, to your support during Blaine’s convalescence as well. I had no idea how much the encouragement of friends and family would mean to us until the time came when we needed it. Please continue to check in at Kendrie’s web site: www.caringbridge.org/ga/kendrie and also continue to keep our entire family in your prayers. Thank you. Sincerely.
Despite all the upheaval in their lives, the kids have done well this year. Brayden reached lots of milestones – swimming like a fish, reading everything she can get her hands on, learning to blow bubbles with her gum (knock on wood, none stuck in her hair yet) and learning to make farting noises with her armpit (yes, we have cousin Dalton to thank for that one.) She still loves school (1st grade) and Brownies, and played soccer for the first time this year. She spent lots of time (too much time) perfecting her pre-pre-teen behaviors, such as eye rolling, head bobbing, and “flouncing” out of a room. If she wasn’t so genuinely sweet and kind and loving and helpful the rest of the time, I’d have to kill her.
Kellen also perfected the farting armpit skill, and played his first season of t-ball. He’s in kindergarten this year, thinks any joke with the word “toilet” in it is hysterical, and loves bike riding, as evidenced by the thousands of skid marks on my driveway. He also enjoys engaging his father and me in serious philosophical conversations on topics such as: Do trees have families? What makes muscles? Where does underarm hair come from? Are there bathrooms in Heaven? (sigh) Most of all, he’s a sweet little kid who still prefers cuddling with his mom and wrestling with his dad, and we’re going to enjoy it as long as we can.
Prior to her illness this fall, Kendrie was doing a great job keeping up with the other two. Swimming, bike riding, you name it, she wasn’t far behind. After her diagnosis we pulled her out of school and now she and I spend lots of time at home together, working puzzles, playing games, reading, and watching Air Bud (or whatever is her current movie of choice) over and over. And over. It breaks our hearts to see her go through this, so we try to focus on the many special qualities she has, like making us laugh, and plow through one day at a time.
At least our year ended on a high note, as Blaine was promoted to Lt. Colonel the beginning of December. For the third year in a row, he made the squadron commander’s list, and for the third year in a row, circumstances intervened. We have requested, and been granted, a one-year extension here at Warner Robins. Our goal is to keep Kendrie’s treatment in Atlanta, with the same cancer center, as long as possible, since her chemotherapy treatment will last until early 2006. We like Georgia and think the extra stability will be good for all of us.
I’d like to end this note with something wise, warm and witty about seeing you through the holidays in good health and happiness --- blah blah blah. Quite frankly, we just want to get through the end of the year intact and start fresh in 2004! Best wishes to you and yours as well.
Friday, December 19, 2003
Oh, yeah, sometimes I forget that Blaine has cancer, too
Brief update: I feel embarrassed for not posting this earlier, since so many of you were kind enough to worry and wonder, but we did get the news that Blaine's biopsy results were clear (nothing more than scar tissue) as the doctors suspected. Thank goodness, because like someone said, watching my head actually explode wouldn't have been a pretty sight. :) Thanks so much to everyone for caring!
Monday, December 15, 2003
Interim Maintenance Begins
HELLO?? RANDOM HOUSE?? ARE YOU THERE???
Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!
For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!
Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.
Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!
Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)
You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!
For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie
####################################################
KENDRIE’S TOP FIVE WORST THINGS ABOUT CONSOLIDATION:
1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.
KENDRIE’S TOP FIVE BEST THINGS ABOUT CONSOLIDATION:
1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???
Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!
For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!
Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.
Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!
Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)
You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!
For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie
####################################################
KENDRIE’S TOP FIVE WORST THINGS ABOUT CONSOLIDATION:
1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.
KENDRIE’S TOP FIVE BEST THINGS ABOUT CONSOLIDATION:
1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???
Wednesday, December 10, 2003
Pointless thoughts ..... no surprise its the only kind I seem to have lately
Pointless thoughts, reflections, aimless mental ramblings………………
When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.
Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.
Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.
** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”
I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”
** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?
** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????
Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.
“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis
“I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.
“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.
“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.
And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:
“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”
I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!
Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.
MARCUS’S SITE
Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.
BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!
When I was in junior high, many (MANY) moons ago, I asked Steve Vaughan to be my lab partner for the highly anticipated and much dreaded annual Frog Dissection Experiment. (Please, no vocal PETA signatures in our guestbook) Steve was one of the smartest boys in 8th grade so I offered to write the report if he would do all the dissecting. Brilliant plan, no? Unfortunately, Steve showed up on the morning of the lab, made one cut on the poor amphibian, threw up all over the lab table and spent the rest of the class laying supine on the floor. Guess who got to dissect the whole frog by herself? Yes, yours truly. I learned way more about Kermit’s extended family than I ever needed to know.
Once again, I find myself thrown head first into a biology subject about which I had no desire to learn. This time, however, under the (perhaps misguided) thought that knowledge is power, I’m learning everything I can about leukemia. I have purchased numerous books on childhood cancer, and specifically, childhood leukemia. The amount of money I’ve spent at Amazon.com this past month is rivaled only by the amount we’ve spent at Pizza Hut.
Although I’ve barely scratched the surface of reading material, I’ve been plowing through the books (hey, you gotta do something at 2am besides surf Caring Bridge websites!) and have occasionally run across statements or statistics that are interesting or touching. I thought I would share a few of the more interesting ones here. The three below are from a book entitled “Childhood Leukemia; the facts” by John S. Lilleyman. It’s a second edition, published in 2000, so I assume most of the statistics are still pretty close to true. And the “oh wow, I never thought of it like that” comments are timeless.
** (some symptoms that children can commonly experience before a leukemia diagnosis are aches and pains, particularly in the legs, paleness, fatigue, and fever) “Childhood leukemia is a rare disease, and often starts with vague and non-specific symptoms that could be due to a huge number of trivial disorders. If one could imagine 25,000 children filling a football stadium, during any one year hundreds or even thousands will look pale, complain of aches and pains, or run a fever. Only one will develop leukemia.”
I find it ironic that even when the chances of winning the lottery are a bazillion to one, people line up in droves to buy a ticket. Yet one in 25,000 and we all think, “Well, it will never happen to my family.”
** No one knows what causes cancer, or what could be done to prevent it, especially in the case of a cancer like leukemia. What they basically know is that a corruption in the DNA of a single, solitary cell that occurs during cell division can cause that cell to spin out of control and wreck havoc. Who knows what corrupts the cell, and who knows if anything can be done to stop it? But, to put it in perspective, (forgive the crude biology lesson) the human body contains around 70,000 BILLION cells which differ in function and appearance depending on where in the body they are. Cells are almost entirely produced in the bone marrow. To maintain the healthy status quo of blood by replacing those cells naturally lost through attrition, some 5 MILLION cells are produced EVERY SECOND OF EVERY DAY for the entire life span of the human being. And if one single cell has a defect, the end result could be leukemia. It’s obviously more complicated than that, but isn’t it amazing to realize the miracle that so many children have cell production that is perfect?
** ”Although collectively the leukemias are the commonest childhood cancer, making up some 30-35 percent of the total, they are still very rare diseases. Each year, only one child in 25,000 will develop leukemia. That translates to just 400 new cases from every 10 million children each 12 months.” Now how the hell did WE get to be so special?????
Less on the technical side, there have been a few comments made recently on my online support group that have touched me because I have felt or thought the exact same things. I won’t mention names in the hope if anyone objects to me using their “quote” then at least I didn’t say their name out loud.
“I miss my blissful ignorance” Mom, discussing family life before her son’s ALL diagnosis
“I’m 35 years old. Before diagnosis, I felt 30. Now, I feel 40.” Dad of daughter with ALL.
“If our bodies had as many toxins being pumped into them as our poor kids do we probably would have bad days too. Frankly I'm so surprised the majority of our kids do as well as they do. My hats are off to them. They are much stronger than I am.” Mom of son with ALL.
“You know, the day after Kendrie was diagnosed we were sitting in her hospital room talking to the social worker about some of the programs available out there, (I was still in my initial state of shock, thinking it was all a mistake) and when she said, "oh, by the way, Kendrie is eligible now for Make A Wish" .......... I thought it was only terminal children and that was how I was finding out my daughter was dying. Literally, I burst into tears. I had no idea all children diagnosed got a wish. I think the social worker felt bad. I know *I* did!” --- One of my personal recent online comments, during a Make A Wish discussion.
And my favorite quote, from the parent of a child diagnosed with leukemia, from the book “Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My First Choice” by Cynthia Krumme:
“How do I feel? Don’t ask! …. Aside from nervousness, irritability, exhaustion, faintness, dizziness, tremors, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisiveness, crying spells, unsocial, asocial and anti-social behavior …. I feel fine …. Thank you.”
I inadvertently discovered the worth of a true friend today when I made plans to donate blood with my friends Kelly E. and Maureen I. on the military base. We met at the visitors center to get our passes (why the Red Cross held the blood drive in a classified area is beyond me) and I was feeling very good about donating. I donated regularly when I was younger and after being on the receiving end of the donations during Kendrie’s week in the hospital, felt it was important to give back. Unfortunately, while waiting for my pass, Kendrie said, “mom, I don’t feel so good” and then threw up all over the floor. Apparently giving a child cough medicine on an empty stomach isn’t such a smart thing to do (I can feel that Parent of the Year Award just slipping through my fingers!) And Kelly, bless her heart, who prior to today I would have considered a “casual friend” totally vaulted herself into “true friend” status by cleaning up my daughter’s barf off the floor. I should probably hand-knit her a Christmas sweater as a thank you. Unfortunately, I don’t know how to knit. So my very public THANK YOU will have to suffice!
Now, if you have time, please visit the site for a boy named Marcus on our list. He relapsed last month and the doctors are not being very optimistic with his mother. I’m sure they could use prayers and good thoughts from anyone so inclined.
MARCUS’S SITE
Also, one last thing, please say a prayer for Blaine as we await the biopsy results from a “suspicious” spot on his MRI. The doctors suspect it is nothing more than scar tissue from his previous surgery, but it will still be nice to have the official “all-clear”. And let’s be honest, if our family has to deal with cancer one more time this year, I think my head might explode.
love to all, Kristie
########################################################
KENDRIE'S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: Having a mom who is so stupid she would give me cough medicine on an empty stomach.
BEST THING ABOUT HAVING CANCER TODAY: The look on mom's face when I ralphed all over the floor!
Monday, December 08, 2003
Consolidation - Day 21
Well, technically, it’s only Day 20, but I’m discovering that in the world of chemotherapy (or at least in our world of chemotherapy) “close” is good enough. The first time or two our clinic visit was bumped a day in either direction I panicked, but now realize going in a day early or late doesn’t seem to matter, and is sometimes unavoidable. It IS, however, very difficult on our wonderful military and scrapbooking friends who keep making plans to bring us dinner on our clinic days, when the days keep changing! (it’s fine with me, though, I’ll take a home cooked meal, especially home cooked by someone else, anytime!)
Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.
We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)
“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)
The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.
At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!
Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.
Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
############################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!
BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!
Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.
We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)
“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)
The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.
At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!
Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.
Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
############################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!
BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!
Wednesday, December 03, 2003
Consolidation - Day 15
THANKS, THE SWEATER EPISODE, AND A DEFINING MOMENT (no, not one of those “Hallmark” ones, either)
Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!
Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:
`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````
So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.
We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.
She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.
Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.
We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”
Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?
I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.
On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.
Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!
####################################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!
BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!
Thanks from the bottom of my heart to all of you for the outpouring of support for my online-mini-nervous-breakdown last week. (see previous journal entry) It was especially great for me to hear that I hit the nail on the head for so many other cancer-parents, as well. Trust me when I say I had no idea how big the “crap sandwich seating section” really was. Too big. While our family was certainly not happy to be shown to our booth, the other patrons in this restaurant have made it bearable, educational, enlightening, and at times, even pleasant. I promise next time I feel the need to vent (out loud) I will put another disclaimer at the beginning!
Kendrie had her day 14 clinic visit yesterday in Atlanta. We drove up Monday night to stay in the hotel, which she loves (I have no idea why, the pillows are too fluffy and they don’t get Toon Disney on the tv, but anyway…..) and last week’s appointment went so well I had very little hesitation about this one. But, the morning started off badly when I realized the sweater I brought her to wear no longer fit. Here is an exerpt from my Christmas letter two years ago, pertaining to Kendrie:
`````` “” At just over two years old, she is very verbal, and we are quite sure she is a genius, at least if brain size has anything to do with it. After all, she needed a 5-yr old sized bike helmet to fit her this year. (Looks like my fat-head gene also landed on my children!) If we are wrong and she’s not a little Einstein, that’s ok, she will still win the Jr. Miss America pageant on talent – she has learned to snort and finds it hysterical to do as often as possible. Above all, she is still my “baby” and I’m enjoying her greatly.””``````
So my point is, don’t ever try to fit “last year’s clothes” over a kid who has been on steroids, especially a kid who has a fat head to begin with.
We were a hundred miles from home and it was the only clothing item she had besides her pajamas, so I stretched, I strained, I pulled, I pushed---I simply could not get that sweater over her head. Finally, after much sweat (on my part) and tears (on her part) it was on, but by then she was already mad at me. Add to the trauma a new pair of shoes that she swore hurt her feet too bad to walk in (never mind she hadn’t even gotten off the bed yet) and it was not our best beginning.
She started crying while they were taking her vitals and it was going downhill rapidly. When it came time to get her port accessed, the nurse said I was going to have to take her sweater back off, and quite frankly, it just wasn’t worth it to me. I asked for scissors, and when the nurse hesitantly handed them to me, I went after the neck of that sweater like a maniacal seamstress. The child-life specialist, after getting over her shock of seeing me hack up a sweater like that, gave Kendrie a Children’s Healthcare t-shirt, which she loved, so all in all I say cutting up the sweater was the best part of the day.
Once again, her anxiety level was so high they had to give her lots of extra “sleepy” meds during her spinal tap. Half way through, she cried out to me, “but I don’t like it here!” Thank goodness for understanding doctors and nurses who don’t take it personally. Our only complaint this week (well, besides the fact she has cancer and all) is a persistent cough. Her oncologist said he heard “a twinge of a hint of a possibility of some crackling in her lungs” so we’ve added another antibiotic to our buffet of medicines here at the house, to make sure it doesn’t turn into walking pneumonia. Ah, remember the good ole’ days when your kid coughed, you threw him a throat lozenge and told him to go outside and play??? Not so simple anymore. Other than that, though, an uneventful visit.
We did have sort of a defining episode today, when I had to remind myself I am not only the parent of a child with cancer, but a parent, period. Perhaps it’s the fact we gave Kendrie anything she wanted, whenever she wanted it, for the past month or so in an attempt to thwart any steroid rages (plus there’s that whole “making it up to a sick child” thing – I’m sure we all need therapy) but I’ve noticed a few things that lead me to believe it’s time we reined it in a bit. First of all, twice yesterday when she thought no –one was looking, she hit her brother and sister, then was VERY upset when she got into trouble. Then she told Blaine last night, “I just got back from the doctor’s today and you have to be nice to me”. Hmmmmm. The final clue was when Martha Stewart, Hillary Clinton, and Madonna all called her for private instruction on “How to throw enough of a fit you always get your way.”
Anyway, she and I went to Target this morning and I was carrying her. From one end of the store to the other, then yet another corner, then back to the photo department to wait for our pictures. So when we were ready to leave I told her she was too heavy and would have to walk. Let’s be honest, Target is a big store and I’m an old, fat, out-of-shape lady who was lugging around 39 pounds of dead weight! Her response was simply to stand in the middle of the aisle with her arms held up. “Fine”, I said, “I’ll carry you, but you have to promise to take your medicine when you get home with no trouble.” I said this in a teasing manner with a smile on my face and she simply looked at me and refused to speak. It really rubbed me the wrong way and I said, “ok, Kendrie? You have to say, ‘ok, mom’ and then I’ll pick you up and carry you out” and the little turd refused to say it. Two simple words and she wouldn’t move her lips. Can you spell p-o-w-e-r-s-t-r-u-g-g-l-e?
I had one of those, “oh, I WILL win this one!” thoughts and sat my big fat butt right down on the floor in the middle of the electronics department at Target. She just looked at me and I said, “we are not leaving until you say ‘ok, mom’ to me” And we sat there. She cried (just a little, she was having trouble working up real tears) she pouted, she tried to sit in my lap and I told her no. Finally, after fourteen minutes (hey, fourteen minutes might not sound like a long time, but when you’re on the floor at Target, with Christmas shoppers pushing their buggies around you and your little bald kid, it’s a long time!) she said it and I picked her up and carried her out to the van. As soon as we got home she glared at me and went to bed and is now sleeping. I swear, some days I don’t know whether to laugh or to cry.
On a side note, we had a great family moment yesterday when Blaine (aka breadwinner and Chief Thinks He’s The Boss But Everyone Knows Mom Really Is) was promoted to Lt. Colonel in the USAF. I’m so glad Kendrie’s counts were good and high and we could all attend his promotion ceremony as a family. Honor, prestige, blah blah, we just need the raise so we can buy our own Pizza Hut. I’ve put up a photo from this event, plus one from Thanksgiving, in the guest book section of the web site.
Special thanks to Kelly E. and Maureen I. for donating blood! Everyone please give the "gift of life" this holiday season by donating blood!
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KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I don’t care how much they try to soften the blow by letting me pick something out of the treasure box (although the Matchbox cars I got yesterday WERE pretty cool) those spinal taps stink!
BEST THING ABOUT HAVING CANCER TODAY: When I got too tired riding my bike around the block yesterday, my dad got off his bike, and pushed me the rest of the way. How’s that for service?!? Now I just need someone to wave me with palm fronds and feed me grapes, er, breadsticks!
Friday, November 28, 2003
The Original "Crap Sandwich" Journal Entry
"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% (For ALL, which is what Kendrie has. Other kinds have lower rates than that.) That means 15% still die up front, and the other 85% ONLY have to worry about a relapse for the rest of their life. I’m feeling a little sick to my stomach just typing all this, so maybe I should move on.
There are some things I am truly grateful for:
I am grateful that it looks like a CVS pharmacy exploded in my kitchen. That means there are drugs that can be used in an attempt to cure my child and beat leukemia.
I am grateful Kendrie has tolerated the treatment so well so far. I am grateful for remission.
I am grateful my husband has a good job with good insurance and that so far, finances are not one more worry to add into the rest of this.
I am grateful for the friends and family, both near and far, who have supported us so kindly, and who will read through this awful journal entry and love me anyway.
I am grateful that when Kendrie was diagnosed, my mother was able to drop everything to come to Georgia and be with us. I am grateful that my dad and my sister so willingly held down the fort in her absence.
I am grateful my husband had cancer this spring. Had he not, he wouldn’t have been placed on the “Do Not Deploy” list and he would have been in Sarejavo when Kendrie was diagnosed. As hard as that week was, I am grateful we were able to face it as a family.
I can’t come up with a reason to be grateful that Kendrie is going bald, but I’ll work on it.
I am grateful that my crap sandwich isn’t any bigger than it is.
First of all, I have to say how much we appreciate those of you who check on this web site and take the time to sign the guestbook. Several of you, and some who have e-mailed me privately, have made the comment you are glad to see me (try to!) put a humorous spin on things, and that you’re glad to know we’re coping so well. To be honest, I have no idea if we’re coping well at all. I just make it a point to do my crying and worrying and stressing in private, and put on a happy face, USUALLY, in public. But today, in this journal entry, I’m going to be a little more honest about things and the way I am really feeling. I’m not sure what has brought about this pathetic moment of self-introspection, but feel the need to get some things off my chest. If you don’t want to hear it, exit now, it won’t hurt my feelings. I promise to kick myself in the butt and be back to normal tomorrow. (No, I will not be taking volunteers for the chance to kick me, so all of you just put your hands down now. No, no, do NOT form a line!)
I think it’s the whole Thanksgiving holiday. Thanksgiving. Giving thanks. Something I’ve found pretty easy to do most years, and took for granted pretty much every year up until now. Sure, I know a little bit about worrying about the health of family members. Who doesn’t? My dad has muscular dystrophy. My mother-in-law is on dialysis for renal failure. My husband had two major surgeries to get rid of a cancerous tumor six months ago, and had a nice chunk of the inside of his head removed at the same time --- reconstruction still a work in progress. So I thought I was a veteran at worrying, but always managed to give thanks irregardless. WRONG. Nothing prepares you for the fear and worry when your child is ill. More than ill. Ill with a disease that, even in this day and age, still claims innocent victims. And now you want me to give thanks????? So here’s the lame analogy I came up with:
Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes, “thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:
You: “excuse me, I didn’t order this crap sandwich”
Waitress: “house special. You got it without asking”
You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.”
Waitress: “well, you got a crap sandwich.”
You (getting upset) “well take it back and give me what I asked for instead!”
Waitress points to a sign that says “Absolutely NO substitutions”
You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to”
And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!”
And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”
That’s a little how I feel right now at Thanksgiving, living in this surreal world of leukemia. I know there are other people who are having a rougher time of things than we are. I know Kendrie is responding well to her chemotherapy. She is in remission and God willing, will stay there. But I am having a very difficult time Giving Thanks for this crap sandwich, and I’m unbelievably resentful that there are more crap sandwiches being made in the kitchen even as I type this, and terrified more than you can possibly know that our family might be due another platter.
I resent that “in remission” doesn’t mean cured. It doesn’t mean anywhere near cured. It means cured for right now. Today. Kendrie could relapse tomorrow; next week; next month; ten years from now. When are we ever supposed to relax? When will this knot in my stomach go away? It’s the last worry on my mind at night and the first thought in my head when I awake each morning.
I resent that for the rest of her (my) life, every time she complains of an ache or a pain or runs a fever, I will fear that the cancer has returned. Prognosis is no where near as good for kids who have relapsed. Dear God, don’t let her relapse.
I resent that I can no longer brush her forehead or cheek without covertly checking for signs of a fever.
I resent that despite my best intentions, my other two kids are getting the short end. There are only so many hours in a day.
I resent that I am so tired, and then feel frustrated with Kendrie for being the source of that, then feel ashamed of my frustration.
I resent that I saw Kellen had bruises on his shins tonight and for a split second, all I could think was “Dear God, not two of them.” It does happen; two kids in one family. What family could endure that? The ones that have to, I guess.
And that’s my point --- to all of you who say, “I don’t know how you do it” or “I don’t think I could do it” Well, of course you could. Do we have any choice? We do it because to do otherwise would be to shortchange Kendrie, and all the kids with cancer, which simply isn’t an option. And I try to do it with a little bit of grace and humor and optimism because quite frankly, if I wrote too many journal entries like this, I would depress the shit out of everyone, myself included. In fact, I don’t know what I hope to accomplish with this one, except maybe trying to explain that underneath the jokes and “looking on the bright side” is a terror so real that sometimes I lie in bed at night and can’t breathe. And I’m not trying to be overly dramatic. I’m trying to be honest. Leukemia kills children. Yes, the “cure” rate is 85% (For ALL, which is what Kendrie has. Other kinds have lower rates than that.) That means 15% still die up front, and the other 85% ONLY have to worry about a relapse for the rest of their life. I’m feeling a little sick to my stomach just typing all this, so maybe I should move on.
There are some things I am truly grateful for:
I am grateful that it looks like a CVS pharmacy exploded in my kitchen. That means there are drugs that can be used in an attempt to cure my child and beat leukemia.
I am grateful Kendrie has tolerated the treatment so well so far. I am grateful for remission.
I am grateful my husband has a good job with good insurance and that so far, finances are not one more worry to add into the rest of this.
I am grateful for the friends and family, both near and far, who have supported us so kindly, and who will read through this awful journal entry and love me anyway.
I am grateful that when Kendrie was diagnosed, my mother was able to drop everything to come to Georgia and be with us. I am grateful that my dad and my sister so willingly held down the fort in her absence.
I am grateful my husband had cancer this spring. Had he not, he wouldn’t have been placed on the “Do Not Deploy” list and he would have been in Sarejavo when Kendrie was diagnosed. As hard as that week was, I am grateful we were able to face it as a family.
I can’t come up with a reason to be grateful that Kendrie is going bald, but I’ll work on it.
I am grateful that my crap sandwich isn’t any bigger than it is.
Tuesday, November 25, 2003
Consolidation - Day 7
And so ends our 24-Hour Empathy Campaign, launched in an attempt to make Brayden and Kellen a little more sympathetic to Kendrie’s plight. For the most part they have been good sports about all the extra attention Kendrie is getting. There have been some grumblings about the disparity of gifts that came for her at the beginning, and even a few “you like Kendrie more than you like us” comments, especially when Kendrie and I go away the night before one of her clinic visits and stay in the hotel. Kellen in particular seems to think the hotel is set on carnival grounds and we spend the whole visit riding ferris wheels and eating cotton candy. Little did he know that the only thing she gets to ride is the rolling luggage cart (because I’m too out of shape to carry her and all of the luggage to the room myself!) and that the room service is only fair-to-middlin’, no cotton candy in sight.
Kellen even made the comment yesterday, standing in line on base to receive his flu shot (which he obviously wasn’t too happy about) that he wished he had cancer so he didn’t have to get a flu shot. (Kendrie has to get hers from the oncology clinic.) I leaned right down in his face and said, “Kellen, Kendrie gets shots every single week, in her chest, back and sometimes her legs” and he paused and then said, “so…… I really don’t want cancer then, do I?” I have to cut him some slack, right? After all, he’s only five. Plus, beating children in public is really frowned upon these days.
We decided since they are out of school this entire week for Thanksgiving Break, we would all go up to Atlanta together and let Brayden and Kellen see what really takes place on a clinic day. Remove the mystery, if you will. They thought staying in the hotel last night was great --- made me realize we really should travel a bit more, if a Courtyard Marriott is their idea of “big fun”.
Then they went to the clinic with us this morning (we prohibited breakfast for them, just like it is for Kendrie on clinic days) and they got to meet the nurses, doctor, child life specialist, and see Kendrie go through the “basics” of a visit – vitals, exam, and getting her port accessed for chemo and the blood draw. When it was time for her spinal tap they went to the playroom with Miss Laura, who talked to them about leukemia and what exactly it means. I don’t know if all pediatric cancer centers in the country have Child Life Specialists, but I want to say that ours ROCKS!!
Anyway, Kendrie’s spinal tap went very well. She responded perfectly to the iv sedation meds which make her “sleepy” and also have an amnesiac effect. Thanks to the amnesia, we were also able to sneak in her flu shot in her leg – hey, sometimes what you don’t know won’t hurt you! The recovery time for iv sedation is less than half an hour, as opposed to the three hours she slept after her general anesthesia last week. This makes for a much, much quicker day, which makes all of us happier. Dr. L withdrew a vial (syringe? Sample?) of spinal fluid, which will be tested to make sure there are no leukemia cells present, and they also injected the methotrexate (preventative chemo) into the spinal fluid. Kendrie was a little out of it, but not as much as I thought, since when I told the nurse we were going to take the kids to see Brother Bear this afternoon, Kendrie’s eyes popped open and she said very emphatically, “No, Dad said Cat in the Hat!”
Her ANC number, which is used to gauge her susceptibility to infection, was very good. This means now is a perfect time to take her out and do some of the things we have been avoiding the past six weeks, like restaurants, movies, shopping, etc. The doctor explained that the next two or three weeks, during the rest of Consolidation, the number should stay high and she should feel pretty good. The steroids have pretty much worn off (yes, Kristie, there is a Santa Claus!) and the meds she is on at home (6MP and Bactrim) shouldn’t have any difficult side effects.
So we enjoyed our day today very much. We hadn’t been out to eat as a family since Kendrie was diagnosed, and sitting in the movie theater, munching on popcorn, was great. I spent a good portion of the movie watching my kids instead of the screen, and seeing their laughing faces (who knew Canadian moose were so funny? I’ll bet that Twelve Days of Christmas song by the Canadian guys about beer would send my kids into hysterical paroxysms.) It was a wonderful feeling to have a “normal” day and be able to pretend, even if just for a few hours, that everything was routine again. I even held back from spraying sanitizer at everyone who walked past our aisle at the theater. All in all, a very good day, and I think it was beneficial to our entire family to spend it together. (of course, not ten minutes after the movie ended the kids were arguing over who needed to go to the bathroom more and “why did she get m&ms if I didn’t and *I’m* going to walk with Dad, not you!” Maybe THAT is the real indicator that life today was back to normal!) Here’s hoping for many more “normal” days ahead.
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KENDRIE’S PERSPECTIVE
WORST PART ABOUT HAVING CANCER TODAY: I’m not quite sure what happened in that doctor’s office, but my leg is really sore and I think somebody around here is trying to get away with something ….. but I’ll figure it out and then they’ll all PAY!
BEST PART ABOUT HAVING CANCER TODAY: The new Roofus doll my Dad bought me from the store tonight -- it burps and everything! I love it! Boo-Yah!
Kellen even made the comment yesterday, standing in line on base to receive his flu shot (which he obviously wasn’t too happy about) that he wished he had cancer so he didn’t have to get a flu shot. (Kendrie has to get hers from the oncology clinic.) I leaned right down in his face and said, “Kellen, Kendrie gets shots every single week, in her chest, back and sometimes her legs” and he paused and then said, “so…… I really don’t want cancer then, do I?” I have to cut him some slack, right? After all, he’s only five. Plus, beating children in public is really frowned upon these days.
We decided since they are out of school this entire week for Thanksgiving Break, we would all go up to Atlanta together and let Brayden and Kellen see what really takes place on a clinic day. Remove the mystery, if you will. They thought staying in the hotel last night was great --- made me realize we really should travel a bit more, if a Courtyard Marriott is their idea of “big fun”.
Then they went to the clinic with us this morning (we prohibited breakfast for them, just like it is for Kendrie on clinic days) and they got to meet the nurses, doctor, child life specialist, and see Kendrie go through the “basics” of a visit – vitals, exam, and getting her port accessed for chemo and the blood draw. When it was time for her spinal tap they went to the playroom with Miss Laura, who talked to them about leukemia and what exactly it means. I don’t know if all pediatric cancer centers in the country have Child Life Specialists, but I want to say that ours ROCKS!!
Anyway, Kendrie’s spinal tap went very well. She responded perfectly to the iv sedation meds which make her “sleepy” and also have an amnesiac effect. Thanks to the amnesia, we were also able to sneak in her flu shot in her leg – hey, sometimes what you don’t know won’t hurt you! The recovery time for iv sedation is less than half an hour, as opposed to the three hours she slept after her general anesthesia last week. This makes for a much, much quicker day, which makes all of us happier. Dr. L withdrew a vial (syringe? Sample?) of spinal fluid, which will be tested to make sure there are no leukemia cells present, and they also injected the methotrexate (preventative chemo) into the spinal fluid. Kendrie was a little out of it, but not as much as I thought, since when I told the nurse we were going to take the kids to see Brother Bear this afternoon, Kendrie’s eyes popped open and she said very emphatically, “No, Dad said Cat in the Hat!”
Her ANC number, which is used to gauge her susceptibility to infection, was very good. This means now is a perfect time to take her out and do some of the things we have been avoiding the past six weeks, like restaurants, movies, shopping, etc. The doctor explained that the next two or three weeks, during the rest of Consolidation, the number should stay high and she should feel pretty good. The steroids have pretty much worn off (yes, Kristie, there is a Santa Claus!) and the meds she is on at home (6MP and Bactrim) shouldn’t have any difficult side effects.
So we enjoyed our day today very much. We hadn’t been out to eat as a family since Kendrie was diagnosed, and sitting in the movie theater, munching on popcorn, was great. I spent a good portion of the movie watching my kids instead of the screen, and seeing their laughing faces (who knew Canadian moose were so funny? I’ll bet that Twelve Days of Christmas song by the Canadian guys about beer would send my kids into hysterical paroxysms.) It was a wonderful feeling to have a “normal” day and be able to pretend, even if just for a few hours, that everything was routine again. I even held back from spraying sanitizer at everyone who walked past our aisle at the theater. All in all, a very good day, and I think it was beneficial to our entire family to spend it together. (of course, not ten minutes after the movie ended the kids were arguing over who needed to go to the bathroom more and “why did she get m&ms if I didn’t and *I’m* going to walk with Dad, not you!” Maybe THAT is the real indicator that life today was back to normal!) Here’s hoping for many more “normal” days ahead.
###########################################################
KENDRIE’S PERSPECTIVE
WORST PART ABOUT HAVING CANCER TODAY: I’m not quite sure what happened in that doctor’s office, but my leg is really sore and I think somebody around here is trying to get away with something ….. but I’ll figure it out and then they’ll all PAY!
BEST PART ABOUT HAVING CANCER TODAY: The new Roofus doll my Dad bought me from the store tonight -- it burps and everything! I love it! Boo-Yah!
Thursday, November 20, 2003
"THWACK -- THWACK -- THWACK -- THWACK"
Consolidation - day 2
"THWACK -- THWACK -- THWACK -- THWACK"
That knocking sound you hear is me banging my head on my computer desk! Along the lines of "third times a charm" I say with absolute certainty that this is the THIRD AND FINAL TIME that I have jinxed myself by writing something in Kendrie's journal and then having it come true the next day.
First jinx -- saying we had Kendrie's oral meds under control. The next day, new, bigger meds, and we tried to get a mountain of powder in her and she completely balked. Hopefully that's a sign she'll never be an addict, right?
Second jinx -- "my child certainly doesn't have the behavioral problems associated with steroids" equals (=) Demon Personality From Hell. 'nuff said.
Jinx #3 (and FINAL jinx) appears in the journal entry I wrote on Tuesday night of this week about "we are so awesome, we've gone the entire 32 days of induction without a fever or illness or ER visit" and would you believe that not thirty minutes after I hit the "send" button, Kendrie woke up screaming and didn't stop for something like twelve hours?????
So yesterday saw us driving back up to Atlanta for a visit to the ER at Children's Hospital. It was justified, as she did indeed have an ear infection and another problem that shouldn't be discussed in great detail except to say it involves some gaseous substances and a need for a much greater vigilance on my part about her daily stool softener. No wonder the poor kid was miserable.
She made it extremely clear to me that she was not at all happy about another six hours in the car (did you know a full bottled water can actually dent the back of a person's head?) Ok, not that bad, but I do need the 800 number of whatever company has invented "soft butt" car seats, if anyone has it.
The good news is that we have been off steroids for three days now and I'm starting to see brief glimpses of the lovable, funny kid I remember. Yesterday, laying in the room at ER, she asked me in the sweetest, most serious little voice, "on the way home can we stop at the same restaurant and have some more of that delicious fish?" Just hearing the words "Delicious fish" come out of her mouth made me giggle. So of course we stopped, had our delicious fish, and even better, got two cups from Steak N Shake with no holes in them this time. (again, see previous journal entry if you don't know what I'm talking about.)
Now, I'm not going to say that my little ray of sunshine is burning as bright as ever, because sure as I do that I will invoke the jinx policy and she'll wake from her nap with a Charles Manson personality, but here's hoping better days are ahead!!
love to all, Kristie
#######################################################
KENDRIE'S PERSPECTIVE
WORST PART ABOUT HAVING CANCER TODAY: All the hair that is falling out of my head keeps getting caught between the new fat folds under my chin and itching me to death!!! Plus my chemo drugs from Tuesday are making me achy.
BEST PART ABOUT HAVING CANCER TODAY: Mom let me eat the chicken nuggets and french fries that somebody left in the fridge --- boy, are they going to be mad later when they realize they're gone!!
"THWACK -- THWACK -- THWACK -- THWACK"
That knocking sound you hear is me banging my head on my computer desk! Along the lines of "third times a charm" I say with absolute certainty that this is the THIRD AND FINAL TIME that I have jinxed myself by writing something in Kendrie's journal and then having it come true the next day.
First jinx -- saying we had Kendrie's oral meds under control. The next day, new, bigger meds, and we tried to get a mountain of powder in her and she completely balked. Hopefully that's a sign she'll never be an addict, right?
Second jinx -- "my child certainly doesn't have the behavioral problems associated with steroids" equals (=) Demon Personality From Hell. 'nuff said.
Jinx #3 (and FINAL jinx) appears in the journal entry I wrote on Tuesday night of this week about "we are so awesome, we've gone the entire 32 days of induction without a fever or illness or ER visit" and would you believe that not thirty minutes after I hit the "send" button, Kendrie woke up screaming and didn't stop for something like twelve hours?????
So yesterday saw us driving back up to Atlanta for a visit to the ER at Children's Hospital. It was justified, as she did indeed have an ear infection and another problem that shouldn't be discussed in great detail except to say it involves some gaseous substances and a need for a much greater vigilance on my part about her daily stool softener. No wonder the poor kid was miserable.
She made it extremely clear to me that she was not at all happy about another six hours in the car (did you know a full bottled water can actually dent the back of a person's head?) Ok, not that bad, but I do need the 800 number of whatever company has invented "soft butt" car seats, if anyone has it.
The good news is that we have been off steroids for three days now and I'm starting to see brief glimpses of the lovable, funny kid I remember. Yesterday, laying in the room at ER, she asked me in the sweetest, most serious little voice, "on the way home can we stop at the same restaurant and have some more of that delicious fish?" Just hearing the words "Delicious fish" come out of her mouth made me giggle. So of course we stopped, had our delicious fish, and even better, got two cups from Steak N Shake with no holes in them this time. (again, see previous journal entry if you don't know what I'm talking about.)
Now, I'm not going to say that my little ray of sunshine is burning as bright as ever, because sure as I do that I will invoke the jinx policy and she'll wake from her nap with a Charles Manson personality, but here's hoping better days are ahead!!
love to all, Kristie
#######################################################
KENDRIE'S PERSPECTIVE
WORST PART ABOUT HAVING CANCER TODAY: All the hair that is falling out of my head keeps getting caught between the new fat folds under my chin and itching me to death!!! Plus my chemo drugs from Tuesday are making me achy.
BEST PART ABOUT HAVING CANCER TODAY: Mom let me eat the chicken nuggets and french fries that somebody left in the fridge --- boy, are they going to be mad later when they realize they're gone!!
Tuesday, November 18, 2003
Consolidation begins
Day 0 of Consolidation ---long entry (aren't they all?)
Ok, first of all, after reading through the messages in Kendrie’s guestbook, I think I have a moral and legal obligation to clear something up, as it seems my character has been unfairly and unjustly besmirched. Apparently, many of you who I *thought* were my friends seem to be under the misguided impression I am some kind of selfish, evil, breadstick-snatching ogre. That simply is not true!!! For the record, when I so innocently helped myself to one of Kendrie’s Pizza Hut breadsticks last week, inciting the temper tantrum to end all temper trantrums, the child had a double-family-sized order sitting in her lap! Do you know how many breadsticks that is? TWENTY! 20! Two-Zero!! And I took ONE measly breadstick!!! So, although the 4-yr old in the car took it as a blatant display of greed on my part, you grown-ups out there should know me better than that! (and hey, if nothing else, my 3 am shifts in front of the microwave heating up mac & cheese should ensure all of you that the child is NOT going hungry, ha!)
So, for those of you following along and wondering why I didn’t update the journal after Kendrie’s appointment last Friday, it’s because the appointment was postponed until today due to scheduling problems around the Thanksgiving holiday next week. We are now on an “every Tuesday” schedule for this next phase (Consolidation) and it wasn’t any problem at all, except it made us the lucky recipients of four BONUS days of Dex. (The Steroid from Hell, for those of you fortunate enough to have no personal experience with it.) Otherwise, we made it through the rest of Induction without complication, and now move forward to Phase II; Consolidation.
As a brief overview (anyone not interested in the dry, medical part of this journal entry, skip down to the next paragraph.) Induction (the initial 28 days, or 32, in our case, of chemotherapy treatment) is about killing as many abnormal white cells in the shortest amount of time possible and achieving a state of remission (no signs or symptoms, although there are still leukemia cells present). Kendrie achieved remission by Day 14, so she is considered an “induction success” and we now move on to Consolidation. Consolidation therapy consists of new combinations of drugs to destroy the cancer cells that survived induction, especially any that might spread to the central nervous system (brain and spinal cord) since those are places the cancer likes to “hide”. Since the CNS cannot be reached by oral or IV drugs, Kendrie will have weekly spinal taps with spinal fluid testing and methotrexate injections into the spinal fluid as a preventative measure. So those, plus her continued daily doses of oral drugs at home, are what the next 28 days should hold for us.
Today’s clinic appointment went markedly better than previous ones. She still cried, but settled down much more quickly and even agreed to let Nurse Amy shine the light in her mouth. (sounds silly, but pursing those lips closed had been a HUGE control issue up until now!) She was also more receptive to the awesome Child Life Specialist, Miss Laura, and made a few art projects while we were waiting for our appointment time. I was thrilled to see her draw a picture of a sunshine happy face, and not some sick and twisted medical scenario, with Mommy strapped to a table and doctors and nurses jabbing needles and pins in her (my freshman psychology paranoia about Art Therapy coming alive!!)
Kendrie gained a total of five and a half pounds during Induction, which doesn’t sound like much until you do the math and realize that is over 15% of her total body weight. I don’t know if the thought of putting on 15% of your body weight is any big deal to the rest of you, but it would definitely bump me out of the “pleasantly plump” category and right up into “wow, even my fat clothes aren’t fitting anymore”! But best of all, her blood pressure was normal enough (well, after the Versed, anyway) that she could have her bone marrow aspiration done under general anesthesia. In between the rain, the Atlanta traffic, and the stupid cup with a hole in it from Steak and Shake that leaked chocolate malt all over my van, which meant I had to pull over on the shoulder of the road and clean it up in the rain, thank goodness we didn't get hit by an 18-wheeler or anything, but I digress -- we didn’t get home until 9pm, so it made for a long day, but otherwise went well.
I want to thank all of you who have been checking the website and signing the guestbook, please sign as many times as you would like; we love hearing from you! It’s great, also, to be re-connecting to friends we haven’t talked to in years. Kind of a crappy reason, but great nonetheless. I also want to say a specific thank you (sounds like I’m giving my Academy acceptance speech, doesn’t it?) to the two local groups here in Warner Robins--- the PK Contracting Wives, and the HOGS (Heart of Georgia Scrappers) who have been so wonderful to our entire family by bringing us meals, and diversions for all three kids. And especially to Nadine Moon, who is the first person to tell me she is donating blood in “honor of” Kendrie. That is a list I would like to see become very long (hint, hint!)
So, that’s it for today. Hope you are all having a great week as well!
Love, Kristie
########################################################
KENDRIE’S PERSPECTIVE:
TOP TEN WORST THINGS ABOUT INDUCTION THERAPY:
1. Taking Decadron and the way it made me feel. Taking Decadron for four extra days. Taking Decadron. Period.
2. Number of bone marrow aspirations to date: 5
3. Number of spinal taps (aka lumbar punctures) to date: 4
4. Number of doses of oral medicine at home, to date: 74
5. Number of needle sticks: a lot
6. Having so many people poke me in the arms and hands with needles before I had my surgery to have my port-cath put in my chest.
7. Having so many people poke me in the chest with needles after I had my surgery to have my port-cath put in my chest.
8. Losing my hair. My Sunday School teacher Ms. Ginger says God knows every single hair on everyone’s head. I hope in my case, he has been practicing his subtraction skills. My mom says it’s a case of “the sins of the parents” (whatever does that mean??? I’m only four, after all, am I supposed to know what she’s talking about?) because Mommy has been very, VERY vocal in the past about how much she hates that whiny brat Calliou and now I’m probably going to wind up looking like him.
9. Spending so much time in the car driving back and forth to Atlanta.
10. Band-aids. Any shape, any size, any kind. Need I say more?
11. Dad says my college fund is depleted by $94.68, the amount of money we spent on cheese pizza and breadsticks from Pizza Hut the past two weeks.
12. Oh, wait, this was a top TEN list, right?
TOP TEN BEST THINGS ABOUT INDUCTION THERAPY:
1. It’s over!!!
2. Achieving remission by day 14!!
3. Achieving remission, period!!!
4. Grandma McClung coming to visit us for an entire month!
5. Knowing that our family has single-handedly kept the employees of Pizza Hut, Kroger, Kraft Cheese, and Purell in business the past month (and think of the thousands more if you believe in trickle down economics!)
6. All of the thoughtful things people have done to show us how much they care.
7. Getting so many wonderful cards and phone calls from people everywhere.
8. Getting to eat whatever I wanted, whenever I wanted (mainly mac & cheese at 3am)
9. Making it through the entire 32 days with no fevers, no ER visits, and no more inpatient hospital admissions (after the one week stay at the time of diagnosis.) I don’t want to go back there anytime soon, no matter how nice those nurses are!
10. Did I mention that it’s OVER????!!!
Ok, first of all, after reading through the messages in Kendrie’s guestbook, I think I have a moral and legal obligation to clear something up, as it seems my character has been unfairly and unjustly besmirched. Apparently, many of you who I *thought* were my friends seem to be under the misguided impression I am some kind of selfish, evil, breadstick-snatching ogre. That simply is not true!!! For the record, when I so innocently helped myself to one of Kendrie’s Pizza Hut breadsticks last week, inciting the temper tantrum to end all temper trantrums, the child had a double-family-sized order sitting in her lap! Do you know how many breadsticks that is? TWENTY! 20! Two-Zero!! And I took ONE measly breadstick!!! So, although the 4-yr old in the car took it as a blatant display of greed on my part, you grown-ups out there should know me better than that! (and hey, if nothing else, my 3 am shifts in front of the microwave heating up mac & cheese should ensure all of you that the child is NOT going hungry, ha!)
So, for those of you following along and wondering why I didn’t update the journal after Kendrie’s appointment last Friday, it’s because the appointment was postponed until today due to scheduling problems around the Thanksgiving holiday next week. We are now on an “every Tuesday” schedule for this next phase (Consolidation) and it wasn’t any problem at all, except it made us the lucky recipients of four BONUS days of Dex. (The Steroid from Hell, for those of you fortunate enough to have no personal experience with it.) Otherwise, we made it through the rest of Induction without complication, and now move forward to Phase II; Consolidation.
As a brief overview (anyone not interested in the dry, medical part of this journal entry, skip down to the next paragraph.) Induction (the initial 28 days, or 32, in our case, of chemotherapy treatment) is about killing as many abnormal white cells in the shortest amount of time possible and achieving a state of remission (no signs or symptoms, although there are still leukemia cells present). Kendrie achieved remission by Day 14, so she is considered an “induction success” and we now move on to Consolidation. Consolidation therapy consists of new combinations of drugs to destroy the cancer cells that survived induction, especially any that might spread to the central nervous system (brain and spinal cord) since those are places the cancer likes to “hide”. Since the CNS cannot be reached by oral or IV drugs, Kendrie will have weekly spinal taps with spinal fluid testing and methotrexate injections into the spinal fluid as a preventative measure. So those, plus her continued daily doses of oral drugs at home, are what the next 28 days should hold for us.
Today’s clinic appointment went markedly better than previous ones. She still cried, but settled down much more quickly and even agreed to let Nurse Amy shine the light in her mouth. (sounds silly, but pursing those lips closed had been a HUGE control issue up until now!) She was also more receptive to the awesome Child Life Specialist, Miss Laura, and made a few art projects while we were waiting for our appointment time. I was thrilled to see her draw a picture of a sunshine happy face, and not some sick and twisted medical scenario, with Mommy strapped to a table and doctors and nurses jabbing needles and pins in her (my freshman psychology paranoia about Art Therapy coming alive!!)
Kendrie gained a total of five and a half pounds during Induction, which doesn’t sound like much until you do the math and realize that is over 15% of her total body weight. I don’t know if the thought of putting on 15% of your body weight is any big deal to the rest of you, but it would definitely bump me out of the “pleasantly plump” category and right up into “wow, even my fat clothes aren’t fitting anymore”! But best of all, her blood pressure was normal enough (well, after the Versed, anyway) that she could have her bone marrow aspiration done under general anesthesia. In between the rain, the Atlanta traffic, and the stupid cup with a hole in it from Steak and Shake that leaked chocolate malt all over my van, which meant I had to pull over on the shoulder of the road and clean it up in the rain, thank goodness we didn't get hit by an 18-wheeler or anything, but I digress -- we didn’t get home until 9pm, so it made for a long day, but otherwise went well.
I want to thank all of you who have been checking the website and signing the guestbook, please sign as many times as you would like; we love hearing from you! It’s great, also, to be re-connecting to friends we haven’t talked to in years. Kind of a crappy reason, but great nonetheless. I also want to say a specific thank you (sounds like I’m giving my Academy acceptance speech, doesn’t it?) to the two local groups here in Warner Robins--- the PK Contracting Wives, and the HOGS (Heart of Georgia Scrappers) who have been so wonderful to our entire family by bringing us meals, and diversions for all three kids. And especially to Nadine Moon, who is the first person to tell me she is donating blood in “honor of” Kendrie. That is a list I would like to see become very long (hint, hint!)
So, that’s it for today. Hope you are all having a great week as well!
Love, Kristie
########################################################
KENDRIE’S PERSPECTIVE:
TOP TEN WORST THINGS ABOUT INDUCTION THERAPY:
1. Taking Decadron and the way it made me feel. Taking Decadron for four extra days. Taking Decadron. Period.
2. Number of bone marrow aspirations to date: 5
3. Number of spinal taps (aka lumbar punctures) to date: 4
4. Number of doses of oral medicine at home, to date: 74
5. Number of needle sticks: a lot
6. Having so many people poke me in the arms and hands with needles before I had my surgery to have my port-cath put in my chest.
7. Having so many people poke me in the chest with needles after I had my surgery to have my port-cath put in my chest.
8. Losing my hair. My Sunday School teacher Ms. Ginger says God knows every single hair on everyone’s head. I hope in my case, he has been practicing his subtraction skills. My mom says it’s a case of “the sins of the parents” (whatever does that mean??? I’m only four, after all, am I supposed to know what she’s talking about?) because Mommy has been very, VERY vocal in the past about how much she hates that whiny brat Calliou and now I’m probably going to wind up looking like him.
9. Spending so much time in the car driving back and forth to Atlanta.
10. Band-aids. Any shape, any size, any kind. Need I say more?
11. Dad says my college fund is depleted by $94.68, the amount of money we spent on cheese pizza and breadsticks from Pizza Hut the past two weeks.
12. Oh, wait, this was a top TEN list, right?
TOP TEN BEST THINGS ABOUT INDUCTION THERAPY:
1. It’s over!!!
2. Achieving remission by day 14!!
3. Achieving remission, period!!!
4. Grandma McClung coming to visit us for an entire month!
5. Knowing that our family has single-handedly kept the employees of Pizza Hut, Kroger, Kraft Cheese, and Purell in business the past month (and think of the thousands more if you believe in trickle down economics!)
6. All of the thoughtful things people have done to show us how much they care.
7. Getting so many wonderful cards and phone calls from people everywhere.
8. Getting to eat whatever I wanted, whenever I wanted (mainly mac & cheese at 3am)
9. Making it through the entire 32 days with no fevers, no ER visits, and no more inpatient hospital admissions (after the one week stay at the time of diagnosis.) I don’t want to go back there anytime soon, no matter how nice those nurses are!
10. Did I mention that it’s OVER????!!!
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