Hi to all – here’s the latest update from the 4th floor of the hospital, which is NOT the ICU – yeah for progress! Blaine actually got out of ICU on Friday afternoon and moved to a room on a post-op floor. Private room; less noise and interruptions; much better! How do they expect people to actually RECOVER in ICU Recovery, when the nurses and machines and lights are so intrusive??? Beeping, beeping, the constant beeping …. But I digress…..
Steadily and surely he’s showing signs of improvement. Still on iv meds and antibiotics, and still has the feeding tube in place, but we’re hoping that comes out tomorrow. He’s not particularly enjoying **that** particular part of the process, to be honest. In fact, when the doctors told him tonight that once he upped his calorie intake orally they would consider removing the ng tube and trumpet, he practically sprinted to the nourishment room and downed two Ensures. Well, sprinted as much as you can with a soft cast on your leg and dragging the iv pole behind you. Speaking of the cast, they cut it off today for the first time since surgery and can I just say that Blaine’s body is the most amazing example of robbing Peter to pay Paul I have ever seen?
They took the bone and tissue they needed to put in his head from his lower leg. That incision is stapled shut, ankle to knee. Since he didn’t have enough fat down there to close the incision, (WHATever!) They sliced a hunk of skin off his thigh to close the incision …. More gauze and staples over the sliced area. Then, to get the blood vessels from his leg into his neck to make sure the tissue transfer in his sinus cavity was a success, they made a six (or so) inch incision across his throat. I tell you what, the poor guy’s going to look like a road map before it’s all done. Or a mugging victim, I’m not sure which.
I know he’s feeling better because frankly, he’s getting a little grumpy. After a particularly enjoyable round of “Mr. Escoe, you need to get up and move more/Mr. Escoe, please don’t get out of bed until we tell you” with his nurse yesterday, he actually called her a bad name (under his breath and behind her back; don’t worry, he hasn’t lost ALL his manners yet!) and he went toe-to-toe with both nurses and the doctor about why black coffee wasn’t included on his clear liquids list. Pretty good signs, don’t you think?
I was lucky enough to escape his foul mood, er, the hospital environment yesterday for a few hours and went to a neat outdoor mall and had lunch with a new friend (I hope I’m not being too forward by calling her a new friend!) named Mandy. We had met online through this site and decided to both take the chance that the other person wasn’t a crazy-person-stalker and meet for lunch, ha! Naturally, I had 911 on Speed Dial and she had family on the other line ….. just in case ….. but it wasn’t necessary and I had a really nice visit. Thank you, Mandy! And even though I don’t normally watch basketball, I will watch the next Seahawks game closely to see you perform with the Sea-Gals. (And re-live my glory days of high school pom pom squad with the awesome routine to Pac-Man, like I told you, ha!) (Goodness, I am old or what???) (don't answer that)
Speaking of meeting people through the site, I want to let all of you know that Caringbridge is in the process of implementing a new policy regarding links to other sites. Let me first state that I appreciate SO much the cheap therapy that CB has afforded me throughout this ordeal, and I love the way I am able to jump from one site to another, to another, through the links on everyone’s pages. The support and encouragement that our family has received (and that I would like to think I’ve been able to offer other families by visiting other sites and signing guestbooks) is truly immeasurable. I *love* to read a guestbook entry on Kendrie's site that starts with, "you don't know me, but I found your site through so-and-so's"...... I’ve donated to CB a few times, but I know it doesn’t come close. However, apparently there have been concerns regarding privacy issues and CB is making all the authors take all the links to other sites off their pages. Not sure yet if that means we won’t be able to include them in journal entries or guestbook signatures or not, but they definitely have to be removed off the sites.
So, I would recommend one thing and ask one other: if you have favorite cb sites, I recommend you bookmark them, as you might not be able to find them again, if you rely on jumping from site to site. I believe the deadline for the removals is by the end of this week, so get going and make sure you know the addresses to the sites you frequent. Second, I would ask that you e-mail Customer Service at www.caringbridge.org (look for "Contact Us" at the top of this page) and let them know how fabulous their service is and how much you enjoy linking from site to site. As I understand it, they are working on some sort of master directory and I’m hopeful that if they hear from the many people who utilize their service, this master directory will come out promptly.
For a much more detailed, eloquent description of this situation, please visit Julianna Banana's page (shoot, my cheat sheet for putting links on my page is sitting at home, post-noted to my computer desk!) at www.caringbridge.org/canada/julianna. Her dad Terry really sums it up well AND gives us all permission to link back to him, so we can all do whatever is necessary to keep the links available. If you do indeed feel strongly about the links (as I do) please e-mail Caringbridge respectfully (as I did) and let them know!
Well, I’ll sign off for now. I hope everyone’s week is off to a good start. Mom is getting more than she bargained for, I fear, as both Kendrie AND the dog threw up in the living room yesterday. Ick. I’m so glad she was there and not me. Plus she had to clean dog poop off their shoes from when they went out in the backyard to play. (Cleaning up dog poop is Blaine’s arena so it goes without saying that by now we are cultivating a small manure farm in the backyard.) Who knew being a grandma was such a hands-on affair???? At this rate I might have to refund all her quarters just to get her to come visit again someday.
Love, Kristie
Monday, March 21, 2005
Friday, March 18, 2005
Lucky
Hello and greetings from the land of swabs, suction tubes, and emesis basins. Some fun stuff, too, like getting to laugh at your husband while he's forced to wear one of those ugly hospital gowns .... and laughing a little more when you realize he keeps flashing the nurse every time he moves and is on too many drugs to even care. :) Actually, he's a very modest guy and he'll be upset to hear that later. I should probably go back and delete it. Naw, I'm too tired and the backspace button is too far away.
Things here are ..... OK (spoken cautiously). Blaine is still in intensive care; staying a little longer than planned, not because anything is wrong, but more of a "better safe than sorry" philosphy. He is off the ventilator, but his airways are pretty obstructed with the swelling, clotting, tissue engraftment and enough packing to stuff Dolly Parton's bra. Truly, if I had ever considered getting a nose job, or any type of facial reconstruction, well, I won't go into gory detail but let's just say that after watching some of *that* work being done today, I'll be withdrawing my application to The Swan.
He looks (and apparently feels) like death warmed over, to be honest. Lots of swelling and bruising .... much like someone took a baseball bat to his face. Hopefully tomorrow (day 3) some of that will start to recede. In the meatime, I'm hopeful that no police officers wander by his room or I'm sure I'll be arrested for spousal abuse. He's on a lot of pain medication and asking for lots more --- thank goodness he wasn't of age in the 1960's or I fear he would have been lost to the "Light Up and Be Happy" generation.
Tubes everywhere, monitors beeping, an incision on his neck that's going to look like someone tried to strangle him, disgusting gurgling noises that just make me INSANE, lots of oozing ..... tonight I had really started to think about how much this stinks and feel sorry for us, when three women walked past our doorway from another ICU room, all of them crying. And suddenly, it's all in perspective again. We are LUCKY. We are not in ICU *hoping* that Blaine gets better. We are in ICU *waiting* for him to get better and I have the luxury of knowing that he will. Sure, he looks like shit and feels like shit NOW, but in just a few weeks he'll be back at home, playing with the kids and taking some more good-natured ribbing from me about how one side of his face looked like Marlon Brando in The Godfather.
Now, if I could just figure out a way to keep that damn gown closed, life would be perfect. :)
Thanks for checking in. You guys are really sustaining me and I appreciate it.
love, Kristie
Things here are ..... OK (spoken cautiously). Blaine is still in intensive care; staying a little longer than planned, not because anything is wrong, but more of a "better safe than sorry" philosphy. He is off the ventilator, but his airways are pretty obstructed with the swelling, clotting, tissue engraftment and enough packing to stuff Dolly Parton's bra. Truly, if I had ever considered getting a nose job, or any type of facial reconstruction, well, I won't go into gory detail but let's just say that after watching some of *that* work being done today, I'll be withdrawing my application to The Swan.
He looks (and apparently feels) like death warmed over, to be honest. Lots of swelling and bruising .... much like someone took a baseball bat to his face. Hopefully tomorrow (day 3) some of that will start to recede. In the meatime, I'm hopeful that no police officers wander by his room or I'm sure I'll be arrested for spousal abuse. He's on a lot of pain medication and asking for lots more --- thank goodness he wasn't of age in the 1960's or I fear he would have been lost to the "Light Up and Be Happy" generation.
Tubes everywhere, monitors beeping, an incision on his neck that's going to look like someone tried to strangle him, disgusting gurgling noises that just make me INSANE, lots of oozing ..... tonight I had really started to think about how much this stinks and feel sorry for us, when three women walked past our doorway from another ICU room, all of them crying. And suddenly, it's all in perspective again. We are LUCKY. We are not in ICU *hoping* that Blaine gets better. We are in ICU *waiting* for him to get better and I have the luxury of knowing that he will. Sure, he looks like shit and feels like shit NOW, but in just a few weeks he'll be back at home, playing with the kids and taking some more good-natured ribbing from me about how one side of his face looked like Marlon Brando in The Godfather.
Now, if I could just figure out a way to keep that damn gown closed, life would be perfect. :)
Thanks for checking in. You guys are really sustaining me and I appreciate it.
love, Kristie
Saturday, March 12, 2005
Surgery
Tuesday night, 10:45 pm ....er, really, early Wednesday morning (if I were still on Georgia time) update:
Hey, this will be brief, as I'm standing in the hotel lobby trying to update on the public access computers. Blaine stole, er, **borrowed** a laptop from work and while it's great for e-mail, it travels at the speed of the Tortoise Express for internet and I just want to update all of you quickly --- all of you who have been kind enough to check in on Blaine, with your phone calls and e-mails and notes of encouragement in the guestbook. It really, truly, awfully madly deeply (hey wait, isn't that a song?) means a lot to us.
While I hate to say our time here has been "fun", per se, can I just say that Seattle is an awesome place??? Well, I don't fit in very well considering I don't drink coffee and no part of my face is pierced, but for our one, too-brief day of sight-seeing, the weather was perfect and browsing around the piers and shops and markets and Space Needle, without the little rugrats, was really great. (Don't tell the little rugrats I said that .... to be honest, I'm missing them already, although I'd deny it in a court of law.)
Surgery today went well, but was looooonnnnnngggggg. We were at the hospital by 5:30am, surgery started at 8am and lasted eleven hours. They removed his fibula (one of the bones in the lower leg, for you anti-anatomy types) and used it to restructure the oral cavity. I think Blaine is going to try really hard to use that as an excuse to get out of P.T. permanently at work, but the doctor assures us that after a week in a cast, and about six weeks of rest, he should be back to normal physical, leg-ular (is that a word?) activity. What's funny is that Blaine has fabulous legs. It's what attracted me to him in the first place. Kidding. But he was a catcher in high school and he really does have awesome, muscular legs. So muscular that after removing the bone, the doctors had to do a skin graft from skin on his thigh because there wasn't enough fat in his lower leg to close up the incision. Ha!!! NOW do you people understand why I say exercise is not good for you???? I could close a wound the size of the Grand Canyon with the cellulite on my legs!!! I told Blaine all that time spent in the gym wasn't good for him, but did he listen??? NO!
Anyway, he is in ICU now and will remain there for 24-48 hours, depending on how he's doing. He is on a ventilator, but was able to avoid a tracheotomy, so he'll be happy when he wakes up and realizes that. The surgeon said everything went great and despite his appearance (tubes and swelling and gauze and hoses and bandages everywhere .... ick .... now I remember why I'm not inclined to go to nursing school) that he will start to awaken tomorrow. I stuck around the ICU for about four hours tonight but he was completely out of it and I'm sure he will have no recollection of it.
So, bottom line, he's doing great ... we should find out in a few days if the blood vessels are all working .... and I'm pooped from sitting in a waiting room for sixteen hours today. It's like a plane ride, isn't it?? You're exhausted from doing NOTHING. So, I'll get a good night's rest tonight and try to update again in a day or two. I do want you guys to know that I sincerely appreciate the well wishes. Sincerely. Now, I just need to figure out a way to streamline the coffee into Blaine's feeding tube ..... or things might get ugly. Wish me luck. :)
love, Kristie
ps Caringbridge doesn't offer spell check and I apologize in advance.
Hey, this will be brief, as I'm standing in the hotel lobby trying to update on the public access computers. Blaine stole, er, **borrowed** a laptop from work and while it's great for e-mail, it travels at the speed of the Tortoise Express for internet and I just want to update all of you quickly --- all of you who have been kind enough to check in on Blaine, with your phone calls and e-mails and notes of encouragement in the guestbook. It really, truly, awfully madly deeply (hey wait, isn't that a song?) means a lot to us.
While I hate to say our time here has been "fun", per se, can I just say that Seattle is an awesome place??? Well, I don't fit in very well considering I don't drink coffee and no part of my face is pierced, but for our one, too-brief day of sight-seeing, the weather was perfect and browsing around the piers and shops and markets and Space Needle, without the little rugrats, was really great. (Don't tell the little rugrats I said that .... to be honest, I'm missing them already, although I'd deny it in a court of law.)
Surgery today went well, but was looooonnnnnngggggg. We were at the hospital by 5:30am, surgery started at 8am and lasted eleven hours. They removed his fibula (one of the bones in the lower leg, for you anti-anatomy types) and used it to restructure the oral cavity. I think Blaine is going to try really hard to use that as an excuse to get out of P.T. permanently at work, but the doctor assures us that after a week in a cast, and about six weeks of rest, he should be back to normal physical, leg-ular (is that a word?) activity. What's funny is that Blaine has fabulous legs. It's what attracted me to him in the first place. Kidding. But he was a catcher in high school and he really does have awesome, muscular legs. So muscular that after removing the bone, the doctors had to do a skin graft from skin on his thigh because there wasn't enough fat in his lower leg to close up the incision. Ha!!! NOW do you people understand why I say exercise is not good for you???? I could close a wound the size of the Grand Canyon with the cellulite on my legs!!! I told Blaine all that time spent in the gym wasn't good for him, but did he listen??? NO!
Anyway, he is in ICU now and will remain there for 24-48 hours, depending on how he's doing. He is on a ventilator, but was able to avoid a tracheotomy, so he'll be happy when he wakes up and realizes that. The surgeon said everything went great and despite his appearance (tubes and swelling and gauze and hoses and bandages everywhere .... ick .... now I remember why I'm not inclined to go to nursing school) that he will start to awaken tomorrow. I stuck around the ICU for about four hours tonight but he was completely out of it and I'm sure he will have no recollection of it.
So, bottom line, he's doing great ... we should find out in a few days if the blood vessels are all working .... and I'm pooped from sitting in a waiting room for sixteen hours today. It's like a plane ride, isn't it?? You're exhausted from doing NOTHING. So, I'll get a good night's rest tonight and try to update again in a day or two. I do want you guys to know that I sincerely appreciate the well wishes. Sincerely. Now, I just need to figure out a way to streamline the coffee into Blaine's feeding tube ..... or things might get ugly. Wish me luck. :)
love, Kristie
ps Caringbridge doesn't offer spell check and I apologize in advance.
THE FINAL, CLOSING, LAST, ENDING PHOTOS THAT YOU ARE FORCED TO LOOK AT FROM KENDRIE’S MAKE-A-WISH TRIP!
277 Days of Treatment to Go
First of all, let me say how much I appreciate those of you who have signed in the guestbook and told me that you don’t mind me hijacking the journal for the past two weeks to update about the trip. I’m sure you’ve realized by now that “short and snappy” is NOT my middle name and I had so many photos and anecdotes I wanted to share! Yes, mainly grumpy anecdotes, I'll admit, but anecdotes nonetheless. Those of you who are online friends don’t seem to mind and those of you who are related don’t have a choice anyway. Be sure to check the guestbook for Jennifer C’s message --- and her personal photo from Gatorland, circa 1989 -- how funny is that??? I’d love to pop in a picture or two from my family’s 1974 trip to Disneyworld, for comparisons sake, but I’m one of those people whose parents rarely took pictures when they were little ---I’m sure that is the psychological explanation for why I take eighteen bazillion photos of my kids every month! I might make them miserable, forcing them to pose for so many pictures, but by God, when they grow up they’ll be glad about it!!!
Anyway, although our second day spent at Universal Studios wasn’t the end of the trip, I’ve saved it for the end of the journal updates because 1) these are my favorite photos of the entire week and 2) it’s the one day we all actually got along and the kids were able to manage pleasantness (for a while, anyway.) Always good to go out on a high note, don't you think?
We started the day back at Islands of Adventure, intent on getting a photo of the kids with Spiderman. You know, if you’ve been following our journey at all, that both Kellen and Kendrie are a tad-bit obsessed with anything-superhero-related. So we went in and had the picture taken, and received a free 8x10 when they saw Kendrie’s GKTW button ----
Let me interject a story here, for those of you who have BEEN to GKTW and who might have noticed something in our photos. Every wish kid at GKTW gets an identifying button with their name on it and the dates of their trip to wear at the parks (good for things like free strollers and parking). GKTW gives the boys blue buttons to wear and the girls, pink buttons. Our first day there, the GKTW volunteers bring out a blue button for Kendrie and are calling her “little buddy”. Although Kendrie’s favorite color is blue and I know when she grows up she wants to be “a boy”, I thought it best to let them know that she is, in reality, a girl. The volunteer apologized profusely, and confessed that they weren’t sure, based on her name, if she were a boy or a girl so they had printed up buttons in both colors. When she walked in the door, with her mullet haircut and cowboy boots, guess which button they pulled out and pinned on her. So he handed her the pink button …. and she promptly informed him she would much rather wear the blue! So all week at the village the volunteers were calling her “little fellow” and “sport” and I was walking along behind her, with the pink button pinned to *MY* jacket, thinking well, I suppose there are worse things in the world, right?
In any case, back to my Islands of Adventure recount: After our photo with Spiderman, we were standing in the middle of Super Hero Street, waiting on Kellen and Blaine to ride the free-fall ride again (and watching Brayden pout, again, just like the day before, that she still wasn’t tall enough to ride it. I swear, she and Kellen BOTH insisted on measuring themselves again for the Hulk coaster, thinking they had grown enough since the day before to ride it now -- how funny is that?) when all the Marvel Superheroes came out for a public meet & greet.
Brayden and Kendrie and I stood in line to wait our turn for a photo, and when Captain America saw Kendrie’s button, he stopped what he was doing, came over to me and pointed out a worker standing to the side. He told me to go over and ask for a private autograph session and that ALL the heroes would be willing to visit with our family privately. So I did, and they did! We followed them to a private area of the park and they talked to the kids for close to ten minutes, high-fiving them, and willingly posing for photos. After they left, the attendant offered to take us to the next section of the park to meet more characters. Again, let me tell you how impressed I was with the level of Guest Service attention we received at Universal Studios!
We left Islands of Adventure and park-hopped to Universal Studios next door. We rode the ET ride which the kids liked, then found the Woody Woodpecker Kids Zone and never left! Kendrie discovered the joy of holding up her arms on the Woody Woodpecker Roller Coaster and I swear she was going for the coaster-club world record for the number of times ridden. Even with our special pass, I was starting to get embarrassed at how many times in a row she ran around and rode it again.
Then the best part of the day was the time spent at the Curious George Water Playland, full of fountains and tubs and hoses and tubes and all kinds of SURPRISE splashing places. I got ambushed once by some kid I didn’t even know, but was glad I risked the water spray because I got so many cute pictures of the kids playing. If it had been twenty degrees warmer, I don’t think we would have ever gotten them to leave. As it was, they only grudgingly put on their dry clothes when the uncontrollable shivering started. (Note to self: check the weather channel and go to the places with water-parks BEFORE the cold front comes through!)
We ate a late lunch at a place called Mel’s, which was set up to resemble a 50’s diner and had 50’s music playing over the speakers. I had what were quite possibly the best onion rings I’ve ever had in my life that day, and experienced the one true hour of happiness on our vacation when the kids were laughing, happy, and enjoying one another’s company --- eating food that we didn’t have to take out a bank loan to purchase and doing a little booth-dancing to Sha-Na-Na (Well, except for Blaine, who doesn’t have a spontaneous booth-dancing bone in his entire body.)
Proof positive that she had a good time by the end of the day!
And that pretty much sums up the entire week. Well, we also attended a Medieval Times dinner, which was fun. Well, it became fun after Blaine lied to the attendant to get Kendrie a hat. Before that, she just whined. Apparently at these dinners, you are assigned seats in a specific section, and assigned a knight to cheer for. We got the yellow and red knight, which was unfortunate since Kendrie’s favorite color is blue. We bought her a blue flag to wave which wasn’t good enough; she wanted the BLUE cheap, paper Burger King hat to wear. So on the way out, after she conveniently left her yellow and red hat behind, Blaine asked the attendant for an extra blue hat and luckily, they were kind enough to give us one. Can you believe we’ve been home almost two weeks and that stupid blue hat is STILL sitting beside her bed in a place of honor???
So, my never-ending thanks to Make-A-Wish and Give Kids the World for the gift of such a wonderful week. Despite the arguing and bickering and fighting and whining, we had moments of greatness that will be forever etched in my memory. Those are the moments and photos I will scrapbook. The other moments, of my children pouting and skirmishing and quarrelling and disagreeing, well, sadly, those are preserved forever on videotape. I’ll be sure to get it out and watch it the next time I get a wild hair to plan a family vacation.
Thanks also to all of you who have sent your well-wishes to Blaine for his surgery next week. He’s already settled in the hotel in Seattle and I’ll be joining him tomorrow. I’m not exactly sure when I’ll be able to update again. The surgery is Tuesday and the doctor estimates it will take about ten hours, then he’s slated to be in ICU for the next 24 hours. Hopefully by Wednesday night or Thursday I will be able to update all of you. Or who knows? Watching him sleep might not be that inherently fascinating --- maybe I’ll sneak the laptop into the ICU and unplug a monitor or beeper or something to use it. But we really are thankful that so many of you are keeping him in your thoughts and would ask that you send some positive vibes to the northwest on Tuesday morning.
Mom appears to have everything under control here and has Kendrie’s chemo schedule all worked out. I’m telling you, her quarter-bribery-scheme was brilliant!! Kendrie practically runs to the kitchen every night, and Brayden and Kellen are chanting “Chug-a-Lug, Chug-a-Lug!” right behind her!! Who knew my kids were so easily manipulated with money? It sure didn’t work as well with our chore-chart system, I can tell you that!
I hope you all have a great week; have I mentioned how lucky we feel to have so many great friends who continue to check in on us???? Thanks!
Love, Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Today it’s not my cancer that stinks, it’s my dad’s. Because it means he went away for a while and I miss him lots. Mainly because my mom can’t play ball to save her life and it’s pretty boring playing outside with her instead of him.
BEST PART ABOUT HAVING CANCER TODAY: I’m getting a stack of quarters big enough to rival any Saturday night poker champion! And did I tell you that my grandma brought us Home Alone 3 to watch? It is the funniest movie EVER! And I’m speaking from experience because I watched it (no exaggeration) five times today!!!
First of all, let me say how much I appreciate those of you who have signed in the guestbook and told me that you don’t mind me hijacking the journal for the past two weeks to update about the trip. I’m sure you’ve realized by now that “short and snappy” is NOT my middle name and I had so many photos and anecdotes I wanted to share! Yes, mainly grumpy anecdotes, I'll admit, but anecdotes nonetheless. Those of you who are online friends don’t seem to mind and those of you who are related don’t have a choice anyway. Be sure to check the guestbook for Jennifer C’s message --- and her personal photo from Gatorland, circa 1989 -- how funny is that??? I’d love to pop in a picture or two from my family’s 1974 trip to Disneyworld, for comparisons sake, but I’m one of those people whose parents rarely took pictures when they were little ---I’m sure that is the psychological explanation for why I take eighteen bazillion photos of my kids every month! I might make them miserable, forcing them to pose for so many pictures, but by God, when they grow up they’ll be glad about it!!!
Anyway, although our second day spent at Universal Studios wasn’t the end of the trip, I’ve saved it for the end of the journal updates because 1) these are my favorite photos of the entire week and 2) it’s the one day we all actually got along and the kids were able to manage pleasantness (for a while, anyway.) Always good to go out on a high note, don't you think?
We started the day back at Islands of Adventure, intent on getting a photo of the kids with Spiderman. You know, if you’ve been following our journey at all, that both Kellen and Kendrie are a tad-bit obsessed with anything-superhero-related. So we went in and had the picture taken, and received a free 8x10 when they saw Kendrie’s GKTW button ----
Let me interject a story here, for those of you who have BEEN to GKTW and who might have noticed something in our photos. Every wish kid at GKTW gets an identifying button with their name on it and the dates of their trip to wear at the parks (good for things like free strollers and parking). GKTW gives the boys blue buttons to wear and the girls, pink buttons. Our first day there, the GKTW volunteers bring out a blue button for Kendrie and are calling her “little buddy”. Although Kendrie’s favorite color is blue and I know when she grows up she wants to be “a boy”, I thought it best to let them know that she is, in reality, a girl. The volunteer apologized profusely, and confessed that they weren’t sure, based on her name, if she were a boy or a girl so they had printed up buttons in both colors. When she walked in the door, with her mullet haircut and cowboy boots, guess which button they pulled out and pinned on her. So he handed her the pink button …. and she promptly informed him she would much rather wear the blue! So all week at the village the volunteers were calling her “little fellow” and “sport” and I was walking along behind her, with the pink button pinned to *MY* jacket, thinking well, I suppose there are worse things in the world, right?
In any case, back to my Islands of Adventure recount: After our photo with Spiderman, we were standing in the middle of Super Hero Street, waiting on Kellen and Blaine to ride the free-fall ride again (and watching Brayden pout, again, just like the day before, that she still wasn’t tall enough to ride it. I swear, she and Kellen BOTH insisted on measuring themselves again for the Hulk coaster, thinking they had grown enough since the day before to ride it now -- how funny is that?) when all the Marvel Superheroes came out for a public meet & greet.
Brayden and Kendrie and I stood in line to wait our turn for a photo, and when Captain America saw Kendrie’s button, he stopped what he was doing, came over to me and pointed out a worker standing to the side. He told me to go over and ask for a private autograph session and that ALL the heroes would be willing to visit with our family privately. So I did, and they did! We followed them to a private area of the park and they talked to the kids for close to ten minutes, high-fiving them, and willingly posing for photos. After they left, the attendant offered to take us to the next section of the park to meet more characters. Again, let me tell you how impressed I was with the level of Guest Service attention we received at Universal Studios!
We left Islands of Adventure and park-hopped to Universal Studios next door. We rode the ET ride which the kids liked, then found the Woody Woodpecker Kids Zone and never left! Kendrie discovered the joy of holding up her arms on the Woody Woodpecker Roller Coaster and I swear she was going for the coaster-club world record for the number of times ridden. Even with our special pass, I was starting to get embarrassed at how many times in a row she ran around and rode it again.
Then the best part of the day was the time spent at the Curious George Water Playland, full of fountains and tubs and hoses and tubes and all kinds of SURPRISE splashing places. I got ambushed once by some kid I didn’t even know, but was glad I risked the water spray because I got so many cute pictures of the kids playing. If it had been twenty degrees warmer, I don’t think we would have ever gotten them to leave. As it was, they only grudgingly put on their dry clothes when the uncontrollable shivering started. (Note to self: check the weather channel and go to the places with water-parks BEFORE the cold front comes through!)
We ate a late lunch at a place called Mel’s, which was set up to resemble a 50’s diner and had 50’s music playing over the speakers. I had what were quite possibly the best onion rings I’ve ever had in my life that day, and experienced the one true hour of happiness on our vacation when the kids were laughing, happy, and enjoying one another’s company --- eating food that we didn’t have to take out a bank loan to purchase and doing a little booth-dancing to Sha-Na-Na (Well, except for Blaine, who doesn’t have a spontaneous booth-dancing bone in his entire body.)
Proof positive that she had a good time by the end of the day!
And that pretty much sums up the entire week. Well, we also attended a Medieval Times dinner, which was fun. Well, it became fun after Blaine lied to the attendant to get Kendrie a hat. Before that, she just whined. Apparently at these dinners, you are assigned seats in a specific section, and assigned a knight to cheer for. We got the yellow and red knight, which was unfortunate since Kendrie’s favorite color is blue. We bought her a blue flag to wave which wasn’t good enough; she wanted the BLUE cheap, paper Burger King hat to wear. So on the way out, after she conveniently left her yellow and red hat behind, Blaine asked the attendant for an extra blue hat and luckily, they were kind enough to give us one. Can you believe we’ve been home almost two weeks and that stupid blue hat is STILL sitting beside her bed in a place of honor???
So, my never-ending thanks to Make-A-Wish and Give Kids the World for the gift of such a wonderful week. Despite the arguing and bickering and fighting and whining, we had moments of greatness that will be forever etched in my memory. Those are the moments and photos I will scrapbook. The other moments, of my children pouting and skirmishing and quarrelling and disagreeing, well, sadly, those are preserved forever on videotape. I’ll be sure to get it out and watch it the next time I get a wild hair to plan a family vacation.
Thanks also to all of you who have sent your well-wishes to Blaine for his surgery next week. He’s already settled in the hotel in Seattle and I’ll be joining him tomorrow. I’m not exactly sure when I’ll be able to update again. The surgery is Tuesday and the doctor estimates it will take about ten hours, then he’s slated to be in ICU for the next 24 hours. Hopefully by Wednesday night or Thursday I will be able to update all of you. Or who knows? Watching him sleep might not be that inherently fascinating --- maybe I’ll sneak the laptop into the ICU and unplug a monitor or beeper or something to use it. But we really are thankful that so many of you are keeping him in your thoughts and would ask that you send some positive vibes to the northwest on Tuesday morning.
Mom appears to have everything under control here and has Kendrie’s chemo schedule all worked out. I’m telling you, her quarter-bribery-scheme was brilliant!! Kendrie practically runs to the kitchen every night, and Brayden and Kellen are chanting “Chug-a-Lug, Chug-a-Lug!” right behind her!! Who knew my kids were so easily manipulated with money? It sure didn’t work as well with our chore-chart system, I can tell you that!
I hope you all have a great week; have I mentioned how lucky we feel to have so many great friends who continue to check in on us???? Thanks!
Love, Kristie
****************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Today it’s not my cancer that stinks, it’s my dad’s. Because it means he went away for a while and I miss him lots. Mainly because my mom can’t play ball to save her life and it’s pretty boring playing outside with her instead of him.
BEST PART ABOUT HAVING CANCER TODAY: I’m getting a stack of quarters big enough to rival any Saturday night poker champion! And did I tell you that my grandma brought us Home Alone 3 to watch? It is the funniest movie EVER! And I’m speaking from experience because I watched it (no exaggeration) five times today!!!
Thursday, March 10, 2005
MAW TRIP, PART …. Well, heck, who can even keep track? I’ve been updating on this trip for longer than it took to actually take the vacation.
OK, this update, then the final one tomorrow night, then I’ll quit subjecting you to vacation photos of my kids; I promise!!
In addition to the three-day park hopper passes we received to Disney, we also received two-day park hopper passes to Universal Studios and Islands of Adventure. Although Disney is Disney and nothing quite compares, we actually enjoyed the Universal Studios parks more. Smaller parks, more manageable crowds and some really cool playlands!
ISLANDS OF ADVENTURE: For anyone planning a trip to Orlando with Make-A-Wish, I can’t speak highly enough of the Universal Studios parks and the level of guest services we received from these parks. Attendants would see Kendrie’s GKTW button and come up and ask ways they could help make our visit more pleasant. Kendrie’s face painting was free, we got free character photos, and we got a completely private autograph session with the Super Marvel Hero Characters …. And THEY approached US and asked to do it! The Fast Pass we received at Disney was great (in fact, I think without it Disney would have been unbearable) ….. but at these parks, we showed our button and were escorted to the front of the line in person, like complete V.I.P.’s. J.-Lo never had it so good. I could go on and on and on about it, but suffice it to say that the special attention we got here was unrivaled at any Disney park. Here are a few highlights, in (what else?) pictures:
My kids, happily posing for a photo outside Suess-land, our first stop of the day. Or do they just want you to *think* they're happy ........... ???????
This is it, the photo that incited WW III ... or the moment better known as "Call Park Security --- there's a mad-woman in Who-ville screaming at some children!" All I wanted was a photo of the three of them on this cute little elephant. This whole part of the park was so cheerful and colorful and FUN! And my three kids couldn't even sit on a stupid elephant statue without getting into the whole "she's in my way his leg is on my foot move your hand I want to be in the front she's pushing me" fighting. Aaaaaaaaggggggggghhhhhhhhhhhh! This is when I reached the breaking point and put them all in timeout and just yelled. And yelled. And yelled some more. Truly, it was a public spectacle. NOT a pretty one.
Well, it appears my screaming fit had some impact. The smiles might have been forced for the next hour or two, but at least they were smiling and not bitching at each other. Or at me.
Definitely the highlight of the entire day!! They were so proud of the finished product! But let me tell you that if you plan to do this with your own children, and one of your kids is an 8-yr old girl whose hair hangs in her face, there are no ponytail holders or barettes or clips and rubberbands for sale anywhere in Who-ville. Believe me. And enjoy these images now, because trust me, after we got off the Popeye and Bluto River Barges, my kids looked like Riff-Raf from the Rocky Horror Picture Show. AFTER the swimming pool scene.
I mean, really. Have you ever seen a kid cuter than this???? How scary is she, with her boots and candy necklace and growly-monster face? Never mind that all the other little girls were getting fairy princess makeup and Tinkerbell glitter. Kendrie rocked, man!
GATORWORLD: The day after we checked out of GKTW, we spent the afternoon at Gatorworld, another local attraction. I thought it was going to be pretty cheesy, but was pleasantly surprised at how much we all enjoyed it. After the attraction-heavy and ride-loading days spent at the theme parks, it was a very nice, low-key way to end the vacation.
Eeesh, this kind of gives me the creeps. I felt a little like Steve the Alligator Guy, or Jeff Corwin. Only without the bravery or jokes. These things give me the heebie-jeebies.
Someone please tell me that my children are not the only ones on the planet who enjoy sticking their heads in places they shouldn't be.
Can you believe they thought this was fun??????
And just so you don't think I'm making it all up, here's a photo of Kendrie crying and pouting because I wouldn't buy her any cotton candy from the concession stand. Doesn't matter that they didn't SELL cotton candy ..... apparently I should have pulled some out of the magic invisible purse I carry at all times.
One last day of photos (I'm saving my very, ultimate favorites for last!) and then I'll give you a respite, I promise!!!
love, Kristie
************************************************
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Well, actually, today was a pretty good day. I got to play on a trampoline with my friends Sophie and Jack while my mom's friend Miss Kelly babysat me and my brother and sister ....... because ...........
BEST PART ABOUT HAVING CANCER TODAY:
My grandma is here visiting!!!!!!! She hasn't been to Georgia since I very first got sick with this leukemia nonsense and I am so happy she is here to take care of me and Brayden and Kellen while my mom is in Seattle taking care of my whiny dad. What's a little reconstructive surgery, anyway???? Well, I overheard my grandma tell my mom that she is nervous about making sure I get my chemo properly each night and to entice me (that's a pretty fancy word for a five-year old, huh?) she brought a ziploc bag FULL of quarters --- every time I take my medicine without fussing I get a quarter, and so do Brayden and Kellen. Holy crap, mom's going to be gone for almost two weeks ----- WE ARE GOING TO CLEAN UP AROUND HERE, WAHOOOOOOO!
In addition to the three-day park hopper passes we received to Disney, we also received two-day park hopper passes to Universal Studios and Islands of Adventure. Although Disney is Disney and nothing quite compares, we actually enjoyed the Universal Studios parks more. Smaller parks, more manageable crowds and some really cool playlands!
ISLANDS OF ADVENTURE: For anyone planning a trip to Orlando with Make-A-Wish, I can’t speak highly enough of the Universal Studios parks and the level of guest services we received from these parks. Attendants would see Kendrie’s GKTW button and come up and ask ways they could help make our visit more pleasant. Kendrie’s face painting was free, we got free character photos, and we got a completely private autograph session with the Super Marvel Hero Characters …. And THEY approached US and asked to do it! The Fast Pass we received at Disney was great (in fact, I think without it Disney would have been unbearable) ….. but at these parks, we showed our button and were escorted to the front of the line in person, like complete V.I.P.’s. J.-Lo never had it so good. I could go on and on and on about it, but suffice it to say that the special attention we got here was unrivaled at any Disney park. Here are a few highlights, in (what else?) pictures:
My kids, happily posing for a photo outside Suess-land, our first stop of the day. Or do they just want you to *think* they're happy ........... ???????
This is it, the photo that incited WW III ... or the moment better known as "Call Park Security --- there's a mad-woman in Who-ville screaming at some children!" All I wanted was a photo of the three of them on this cute little elephant. This whole part of the park was so cheerful and colorful and FUN! And my three kids couldn't even sit on a stupid elephant statue without getting into the whole "she's in my way his leg is on my foot move your hand I want to be in the front she's pushing me" fighting. Aaaaaaaaggggggggghhhhhhhhhhhh! This is when I reached the breaking point and put them all in timeout and just yelled. And yelled. And yelled some more. Truly, it was a public spectacle. NOT a pretty one.
Well, it appears my screaming fit had some impact. The smiles might have been forced for the next hour or two, but at least they were smiling and not bitching at each other. Or at me.
Definitely the highlight of the entire day!! They were so proud of the finished product! But let me tell you that if you plan to do this with your own children, and one of your kids is an 8-yr old girl whose hair hangs in her face, there are no ponytail holders or barettes or clips and rubberbands for sale anywhere in Who-ville. Believe me. And enjoy these images now, because trust me, after we got off the Popeye and Bluto River Barges, my kids looked like Riff-Raf from the Rocky Horror Picture Show. AFTER the swimming pool scene.
I mean, really. Have you ever seen a kid cuter than this???? How scary is she, with her boots and candy necklace and growly-monster face? Never mind that all the other little girls were getting fairy princess makeup and Tinkerbell glitter. Kendrie rocked, man!
GATORWORLD: The day after we checked out of GKTW, we spent the afternoon at Gatorworld, another local attraction. I thought it was going to be pretty cheesy, but was pleasantly surprised at how much we all enjoyed it. After the attraction-heavy and ride-loading days spent at the theme parks, it was a very nice, low-key way to end the vacation.
Eeesh, this kind of gives me the creeps. I felt a little like Steve the Alligator Guy, or Jeff Corwin. Only without the bravery or jokes. These things give me the heebie-jeebies.
Someone please tell me that my children are not the only ones on the planet who enjoy sticking their heads in places they shouldn't be.
Can you believe they thought this was fun??????
And just so you don't think I'm making it all up, here's a photo of Kendrie crying and pouting because I wouldn't buy her any cotton candy from the concession stand. Doesn't matter that they didn't SELL cotton candy ..... apparently I should have pulled some out of the magic invisible purse I carry at all times.
One last day of photos (I'm saving my very, ultimate favorites for last!) and then I'll give you a respite, I promise!!!
love, Kristie
************************************************
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Well, actually, today was a pretty good day. I got to play on a trampoline with my friends Sophie and Jack while my mom's friend Miss Kelly babysat me and my brother and sister ....... because ...........
BEST PART ABOUT HAVING CANCER TODAY:
My grandma is here visiting!!!!!!! She hasn't been to Georgia since I very first got sick with this leukemia nonsense and I am so happy she is here to take care of me and Brayden and Kellen while my mom is in Seattle taking care of my whiny dad. What's a little reconstructive surgery, anyway???? Well, I overheard my grandma tell my mom that she is nervous about making sure I get my chemo properly each night and to entice me (that's a pretty fancy word for a five-year old, huh?) she brought a ziploc bag FULL of quarters --- every time I take my medicine without fussing I get a quarter, and so do Brayden and Kellen. Holy crap, mom's going to be gone for almost two weeks ----- WE ARE GOING TO CLEAN UP AROUND HERE, WAHOOOOOOO!
Wednesday, March 09, 2005
MAW, Part 3 (I swear, I’m almost to the end!)
279 Days of Treatment to Go
You know, I’ve already summed up the gist of the entire vacation:
They fought.
I was annoyed.
We went home.
So rather than force-feed you more stories about my children’s insufferable behavior, I’ll just put up a few of my favorite photos from the parks and hit the highlights in text. I figured out, being the math genius that I am, that I’d need to share ten or twelve photos a day just to show off my favorites …. So I’ll nip that in the bud and be quick about it. (Well, as “quick” as I’m able to be, which you all know is not very!)
MAGIC KINGDOM --- We went twice to the Magic Kingdom, luckily. The first time was unplanned, when MGM turned out to be a flop. You really need slightly older kids to enjoy MGM. Even Kellen was too short for the “good” rides. It’s not a good sign when the highlight of the park is the tram ride to and from the parking lot. So we park hopped over to the Magic Kingdom for an afternoon, which sounds so light-hearted, doesn’t it? Park hopping; like little fairies, happily flitting about from one park to the next. But let me tell you that park-hopping is not an event to be taken lightly with two adults, three kids, the fanny pack, a stroller, discarded baseball caps and stuffed animals, souvenirs from the first park, a camera bag, jackets, rain ponchos, a snack bag and a handy-dandy folder crammed full of tips and pointers on how to make the vacation more enjoyable!!! How ironic that of the 75 billion people in the Magic Kingdom that day, we wound up in the front line at Guest Services behind the Sterns, our online support group friends who were staying at GKTW at the same time, completely unplanned??? I do think the novelty of hanging out with Rachel and Alexis helped improve my kids’ behavior, at least a teeny, tiny bit, so I’m grateful to Karen and Jeff (and Karen’s mom!) for graciously letting us crash their Buzz Lightyear party in Tomorrowland and then letting us stick around for awhile. At least if they griped about it, they were polite enough to do it behind our backs.
I’m really thankful we were able to enjoy a few hours in the park that afternoon, since I had planned to save the Magic Kingdom for the last day. The night-time parade and fireworks show was going to be our big finale on Friday night …. and when we returned to the park on Friday, we were completely rained out. Parades canceled, temperatures dropping, and we were wet, cold, and not willing to stay until 9pm for the fireworks show. So some of these pictures are from the first day at Magic Kingdom and some are from the second, slightly-more-damp day. (Scrapbookers everywhere will notice that I dressed my kids in the same clothes both days for the purpose of continuity on my layouts, ha!) Kendrie's favorite?? Splash Mountain; we rode it five times in a row. Best comment of the day? When she saw some animatronic vultures in the Splash Mountain ride and said, "Look! Vampire-birds!"
Do you suppose this castle is the single most photographed landmark on earth? Or has Paris Hilton campaigned hard enough to claim that honor for herself?
Character lunch at the Crystal Palace. My kids turned up their noses initially at having lunch with "baby" characters like Tigger and Piglet, but you should have seen Kendrie when she realized Pooh had come and gone past our table while she was in the restroom ..... never have you seen a grown woman chase down a costumed bear like you did that day.
Oh, wait, is this a photo of my kids happy? Actually being pleasant for one moment of one day??? They must be imposters. ps. Kellen's ears are not really that big. He insists on wearing those adult-sized baseball caps pulled down that far and he looks like a goofball.
I just love this photo. We were getting autographs (remind me to tell you the story of the autograph books sometime) and Pinnochio picked up Kellen's sword and started fighting him. Kellen loved it. That sword was the best ten bucks we spent all day. And wouldn't you know, it's the one item that was stolen the entire week. Never mind that I had two thousand dollars worth of camera equipment laying around for hours on end, oh no, somebody wanted the cheap plastic sword ..... Kellen layed the sword on a bench for two minutes and walked not ten feet away to ask me a question. When he returned, sword gone. Seriously, people? Stealing from a kid at Disney???
Well, we were cold and wet, but we were able to get a few autographs so the kids were happy, at least. It lasted about eleven seconds.
How sad is this? By gosh, we're going to make the best of the afternoon pity-parade, even when it's raining.
I do have two more days’ worth of photos to share, but am worried my web host picture-storage place thing will exceed its bandwidth if I put any more up tonight. I'll update again on Friday, and on Saturday. So I’ll close for now, and thank you for putting up with me this long. As much as I’m rambling on and on about it, you’d think we traveled to Great Britain and met the Queen or something.
Hope you are all having a great week so far!
Love, Kristie
********************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Tonight was kind of weird. My dad is in Seattle for some kind of surgery, or something, so Mom gave me my chemo tonight. Usually it’s dad. She used the same applesauce, the same spoon, the same bowl, and the same water …. But she still did it wrong. Or at least I *told* her she did it wrong because I don't want her getting too confident when the old man's not around.
BEST PART ABOUT HAVING CANCER TODAY:
Hey, mom signed us up for something called Relay for Life today! Not sure what it means exactly, but it sounds like fun!
You know, I’ve already summed up the gist of the entire vacation:
They fought.
I was annoyed.
We went home.
So rather than force-feed you more stories about my children’s insufferable behavior, I’ll just put up a few of my favorite photos from the parks and hit the highlights in text. I figured out, being the math genius that I am, that I’d need to share ten or twelve photos a day just to show off my favorites …. So I’ll nip that in the bud and be quick about it. (Well, as “quick” as I’m able to be, which you all know is not very!)
MAGIC KINGDOM --- We went twice to the Magic Kingdom, luckily. The first time was unplanned, when MGM turned out to be a flop. You really need slightly older kids to enjoy MGM. Even Kellen was too short for the “good” rides. It’s not a good sign when the highlight of the park is the tram ride to and from the parking lot. So we park hopped over to the Magic Kingdom for an afternoon, which sounds so light-hearted, doesn’t it? Park hopping; like little fairies, happily flitting about from one park to the next. But let me tell you that park-hopping is not an event to be taken lightly with two adults, three kids, the fanny pack, a stroller, discarded baseball caps and stuffed animals, souvenirs from the first park, a camera bag, jackets, rain ponchos, a snack bag and a handy-dandy folder crammed full of tips and pointers on how to make the vacation more enjoyable!!! How ironic that of the 75 billion people in the Magic Kingdom that day, we wound up in the front line at Guest Services behind the Sterns, our online support group friends who were staying at GKTW at the same time, completely unplanned??? I do think the novelty of hanging out with Rachel and Alexis helped improve my kids’ behavior, at least a teeny, tiny bit, so I’m grateful to Karen and Jeff (and Karen’s mom!) for graciously letting us crash their Buzz Lightyear party in Tomorrowland and then letting us stick around for awhile. At least if they griped about it, they were polite enough to do it behind our backs.
I’m really thankful we were able to enjoy a few hours in the park that afternoon, since I had planned to save the Magic Kingdom for the last day. The night-time parade and fireworks show was going to be our big finale on Friday night …. and when we returned to the park on Friday, we were completely rained out. Parades canceled, temperatures dropping, and we were wet, cold, and not willing to stay until 9pm for the fireworks show. So some of these pictures are from the first day at Magic Kingdom and some are from the second, slightly-more-damp day. (Scrapbookers everywhere will notice that I dressed my kids in the same clothes both days for the purpose of continuity on my layouts, ha!) Kendrie's favorite?? Splash Mountain; we rode it five times in a row. Best comment of the day? When she saw some animatronic vultures in the Splash Mountain ride and said, "Look! Vampire-birds!"
Do you suppose this castle is the single most photographed landmark on earth? Or has Paris Hilton campaigned hard enough to claim that honor for herself?
Character lunch at the Crystal Palace. My kids turned up their noses initially at having lunch with "baby" characters like Tigger and Piglet, but you should have seen Kendrie when she realized Pooh had come and gone past our table while she was in the restroom ..... never have you seen a grown woman chase down a costumed bear like you did that day.
Oh, wait, is this a photo of my kids happy? Actually being pleasant for one moment of one day??? They must be imposters. ps. Kellen's ears are not really that big. He insists on wearing those adult-sized baseball caps pulled down that far and he looks like a goofball.
I just love this photo. We were getting autographs (remind me to tell you the story of the autograph books sometime) and Pinnochio picked up Kellen's sword and started fighting him. Kellen loved it. That sword was the best ten bucks we spent all day. And wouldn't you know, it's the one item that was stolen the entire week. Never mind that I had two thousand dollars worth of camera equipment laying around for hours on end, oh no, somebody wanted the cheap plastic sword ..... Kellen layed the sword on a bench for two minutes and walked not ten feet away to ask me a question. When he returned, sword gone. Seriously, people? Stealing from a kid at Disney???
Well, we were cold and wet, but we were able to get a few autographs so the kids were happy, at least. It lasted about eleven seconds.
How sad is this? By gosh, we're going to make the best of the afternoon pity-parade, even when it's raining.
I do have two more days’ worth of photos to share, but am worried my web host picture-storage place thing will exceed its bandwidth if I put any more up tonight. I'll update again on Friday, and on Saturday. So I’ll close for now, and thank you for putting up with me this long. As much as I’m rambling on and on about it, you’d think we traveled to Great Britain and met the Queen or something.
Hope you are all having a great week so far!
Love, Kristie
********************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Tonight was kind of weird. My dad is in Seattle for some kind of surgery, or something, so Mom gave me my chemo tonight. Usually it’s dad. She used the same applesauce, the same spoon, the same bowl, and the same water …. But she still did it wrong. Or at least I *told* her she did it wrong because I don't want her getting too confident when the old man's not around.
BEST PART ABOUT HAVING CANCER TODAY:
Hey, mom signed us up for something called Relay for Life today! Not sure what it means exactly, but it sounds like fun!
Sunday, March 06, 2005
MAW TRIP, PART 2
283 Days of Treatment to Go
For the record, I’m not dragging out these Make-A-Wish journal entries because I think you guys have nothing better to do than visit our site and check in every day (even though I have nothing better to do than check out the guestbook every day!) Truth be told, I took so many photos that I want to share with you that if I loaded all of them up in a single journal entry, I’d cripple Geocities entirely. And, you’d get plain sick of looking at my kids. So I hope by spreading it out over a couple of entries, you won’t be so tired of us that you stop visiting our site!
We began the second day of our trip with me in full "Type-A-Control-Freak-Trip-Planner" mode. Every single “Planning your Disney Vacation” book that I begged, borrowed or stole all said to arrive at the parks at least an hour before opening and by gosh, I’m a rule-follower if ever there was one. So we woke the kids at 6:30 (really, what were we thinking??? Is that *any* way to start a vacation?) and headed to Animal Kingdom.
Blaine and I were in our usual respective positions of driver and navigator, aka Mr. I Don’t Need to Stop and Ask Directions and Mrs. Oh My God Pull Over and Let Me Get Behind the Wheel Myself! I knew the day was off to a bad start when he squinted at a street sign up ahead and asked, “Is that where I turn, honey? Steven Dwarfs Avenue?” Come on, how can I NOT make fun of a guy who obviously needed new bifocals for his birthday last month and doesn’t realize that none of the dwarfs were named Steven?
Anyway, we arrived at the park an hour ahead, just like the travel books suggested. I told the kids that because we were with Give Kids the World, we wouldn’t have to wait in any lines …. they took this literally and were quite upset we weren’t allowed in the main gates at this time, but had to wait with the other thousands of Animal Kingdom groupies who apparently read the same books as me, who also hoped to be the first in the park.
"Kendrie, posing for her first photo of the day at Animal Kingdom"
I want to mention that this outfit you see on Kendrie is one she selected herself. I argued with her for ten minutes that morning that she needed to wear tennis shoes and in fact, carried them around the park all day assuming her feet would get sore and boy, “she’d thank me then!” But of course they didn’t, she didn’t, and she wore these boots every day of the vacation. Whatever.
We rode the safari ride that morning which we liked a lot, and saw the Festival of the Lion King Show, which we loved. By lunch, though, the kids had fought over who got to sit in the strollers (never mind we had two strollers and that Brayden and Kellen, at ages 8 and 6, are a little too big for them anyway!); fought over who got to sit where on the rides, and in the shows, and who got to push the strollers when they weren’t riding in them. Something tells me that Blaine and I lost control of the vacation this very morning, by not squelching their little argumentative personalities right from the start!
Those parks are big, I am out of shape, and those strollers are heavy! By lunch, I was hot, tired, and ready for a break. I had made reservations at the Rainforest Café, which I thought the kids would get a kick out of. We’ve never lived anywhere near one, and I just knew that although expensive for lunch, it would be worth it. By this point, considering they had managed to fight all morning, over any- and everything, I thought it might even be soothing balm needed to help heal the festering blister that had become my kids’ moods.
So as we’re walking in, I’m oohing and aahing over the décor, animals, “thunderstorm” show; telling my kids, “See? Didn’t I tell you this was going to be neat? Isn’t Mommy fabulous for getting us reservations at an awesome place like this????” and feeling all proud of myself and Kendrie looked at me, wrinkled her nose and said, “It smells funny in here.”
After lunch, we went to the Tree of Life and watched Flik's 3D Bug Adventure --- which I discovered too late that if you have a child with you who really freaks out in the dark and doesn't like it, especially when the screen "spits" at you and "bugs" run aound your chair, well, there's no real way out of there! Let's just say I wound up with a crying child on my lap whose head was buried in my shoulder.
Next, we went over to the Dino-land part of the park and let the kids play on a neat play-land and ride a few rides. Then, in an episode that would come to exemplify our entire vacation, we went to the “Dinosaur” ride and Kendrie, although technically tall enough, wasn’t so sure about it. She’s not too keen on being in the dark (see above Bugs Life comment) and although she had the courage to walk in, she balked at the last minute and didn’t want to go. That’s fine, I certainly don’t want to traumatize the poor child at the age of 5, (again, with the Bugs Life episode!) so I told Blaine to take the older two and Kendrie and I would wait out front.
Well, if you’ve never been to Disney, some marketing genius had the brilliant idea to have every “theme” ride empty into a gift shop, conveniently filled with t-shirts and key chains and stuffed animals and all other kinds of “must-have” items. Disney probably makes millions this way. We were waiting for them to get off the Dinosaur ride, and Kendrie asked for a dinosaur book. I said no, and she started in with, “But it’s not fair that they got to ride the ride … I wanted to ride that roller coaster earlier and I wasn’t tall enough and now this ride was too scary and I’m not getting to do anything!” (pout, pout, whine, whine) So I’m thinking to myself, “You know, she’s right. She is too short for a lot of these things and it’s only a few dollars. If it makes her happy, well, this trip *is* supposed to be about her, right?” and bought her the book. Brayden and Kellen get off the ride and naturally, were upset that I didn’t buy THEM anything, so I said, “Fine, find something you like and you can have a souvenier, too” and then Kendrie starts in with, “But if they get to buy something then I get to buy something else!” and Brayden says, “No Fair! How come she gets TWO things???” and I’m sitting back wondering how have I managed to raise the three most greedy, selfish children on the planet without even realizing it???
Anyway, we finished the day with the afternoon parade and a few runs down the Kali River Rapids, which were lots of fun. I was never so smug about the dollar-store rain ponchos I bought for the trip as I was that afternoon.
Then it was back to the village for the evening activity, a pool party with Shamu and other creatures from Sea World. Kellen got over his initial disappointment that Bubbles was unable to join us (I thought Bubbles was the name of Michael Jackson’s chimpanzee???) and he and Brayden and Kendrie limbo’d and hula-hooped the night away. It was really a lot of fun, as were all the activities at GKTW.
OK --- that’s all I’m going to put about the trip for now but I promise to finish up before the end of the week. I’m sure you’re all anxious for me to move on to the other pressing, interesting matters in my life that I write about on a regular basis --- like, …. well, ….. um, ...... wow, maybe I should drag this Make-A-Wish update out as long as possible!
First, though, I want to tell you about an initiative that Saturn Automotive is offering in an effort to help the National Bone Marrow Foundation. As you might or might not know, there are nowhere near enough people signed up to be bone marrow donors on the registry. You need only go to Taylor’s site and read the difficulty she had finding a donor to realize this is a serious problem. Unfortunately, getting signed up as a bone marrow donor isn’t as easy as checking “donor” on your drivers license (which I’m sure **ALL** of you have done also, right?????) I received an e-mail with the following information in it and want to share it with all of you in hopes if we can get the word out, we can help make this initiative a success. Here is a portion of the e-mail I received; I hope you will all visit the site and do what you can to help!
“Anyway.....Saturn is offering a wonderful promotion to help the Marrow Foundation. They are red wristbands in the style of Live Strong bands. People go to Saturn's site, and they can get two free wristbands. Proceeds from this promotion will go to The Marrow Foundation to help cover the costs of tissue typing new volunteers for the National Marrow Donor Program Registry. If people log on to the Saturn Web site (see below) between March 3 and March 8, they can order two FREE wristbands, and Saturn will contribute $.50 for each one ordered to The Marrow Foundation. According to Trevor's page, Saturn has made 69,000 wristbands available for this purpose with a potential value of $34,500 to The Marrow Foundation!:
Isn't that awesome? Here is the link!
Saturn Wristbands for Bone Marrow
I just ordered mine and the process is very easy! I thought perhaps you might want to mention it to your many readers and pass the word along before March 8th.”
As of right now, I have three bracelets that I never take off my left wrist … my yellow Live Strong band, my green Cure Search band, and of course, the one, the only, the original Julianna Banana Pink Wish Bracelet. I plan to add my red marrow band as soon as it arrives in the mail!
Hope you all had a great weekend; Kendrie played hard and is pooped. Her “boyfriend” Nicholas came over to play today and I think she’s worn out from chasing him all over the yard. I’m not sure if she’d know what to do with him if she caught him, but she sure thinks he’s cute! Maybe the fact she is so tired is why when it came time for meds tonight, the exact same meds she’s been taking every night since last August, she hid in the closet and wouldn’t come out???? Let me just say that Blaine did NOT see the humor in that!
Take care,
Kristie
*********************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My parents just don’t seem to realize that I get tired of taking all this medicine! Bactrim, 6mp, steroids, methotrexate --- every time I turn around they’re coming at me with a vial, or a syringe, or a spoonful of applesauce. Enough, already!
BEST PART ABOUT HAVING CANCER TODAY: Woo-hoo! Mom got our Camp Sunshine stuff in the mail. Hey, all you out there in Caringbridge Land --- who else is going in April??!
For the record, I’m not dragging out these Make-A-Wish journal entries because I think you guys have nothing better to do than visit our site and check in every day (even though I have nothing better to do than check out the guestbook every day!) Truth be told, I took so many photos that I want to share with you that if I loaded all of them up in a single journal entry, I’d cripple Geocities entirely. And, you’d get plain sick of looking at my kids. So I hope by spreading it out over a couple of entries, you won’t be so tired of us that you stop visiting our site!
We began the second day of our trip with me in full "Type-A-Control-Freak-Trip-Planner" mode. Every single “Planning your Disney Vacation” book that I begged, borrowed or stole all said to arrive at the parks at least an hour before opening and by gosh, I’m a rule-follower if ever there was one. So we woke the kids at 6:30 (really, what were we thinking??? Is that *any* way to start a vacation?) and headed to Animal Kingdom.
Blaine and I were in our usual respective positions of driver and navigator, aka Mr. I Don’t Need to Stop and Ask Directions and Mrs. Oh My God Pull Over and Let Me Get Behind the Wheel Myself! I knew the day was off to a bad start when he squinted at a street sign up ahead and asked, “Is that where I turn, honey? Steven Dwarfs Avenue?” Come on, how can I NOT make fun of a guy who obviously needed new bifocals for his birthday last month and doesn’t realize that none of the dwarfs were named Steven?
Anyway, we arrived at the park an hour ahead, just like the travel books suggested. I told the kids that because we were with Give Kids the World, we wouldn’t have to wait in any lines …. they took this literally and were quite upset we weren’t allowed in the main gates at this time, but had to wait with the other thousands of Animal Kingdom groupies who apparently read the same books as me, who also hoped to be the first in the park.
"Kendrie, posing for her first photo of the day at Animal Kingdom"
I want to mention that this outfit you see on Kendrie is one she selected herself. I argued with her for ten minutes that morning that she needed to wear tennis shoes and in fact, carried them around the park all day assuming her feet would get sore and boy, “she’d thank me then!” But of course they didn’t, she didn’t, and she wore these boots every day of the vacation. Whatever.
We rode the safari ride that morning which we liked a lot, and saw the Festival of the Lion King Show, which we loved. By lunch, though, the kids had fought over who got to sit in the strollers (never mind we had two strollers and that Brayden and Kellen, at ages 8 and 6, are a little too big for them anyway!); fought over who got to sit where on the rides, and in the shows, and who got to push the strollers when they weren’t riding in them. Something tells me that Blaine and I lost control of the vacation this very morning, by not squelching their little argumentative personalities right from the start!
Those parks are big, I am out of shape, and those strollers are heavy! By lunch, I was hot, tired, and ready for a break. I had made reservations at the Rainforest Café, which I thought the kids would get a kick out of. We’ve never lived anywhere near one, and I just knew that although expensive for lunch, it would be worth it. By this point, considering they had managed to fight all morning, over any- and everything, I thought it might even be soothing balm needed to help heal the festering blister that had become my kids’ moods.
So as we’re walking in, I’m oohing and aahing over the décor, animals, “thunderstorm” show; telling my kids, “See? Didn’t I tell you this was going to be neat? Isn’t Mommy fabulous for getting us reservations at an awesome place like this????” and feeling all proud of myself and Kendrie looked at me, wrinkled her nose and said, “It smells funny in here.”
After lunch, we went to the Tree of Life and watched Flik's 3D Bug Adventure --- which I discovered too late that if you have a child with you who really freaks out in the dark and doesn't like it, especially when the screen "spits" at you and "bugs" run aound your chair, well, there's no real way out of there! Let's just say I wound up with a crying child on my lap whose head was buried in my shoulder.
Next, we went over to the Dino-land part of the park and let the kids play on a neat play-land and ride a few rides. Then, in an episode that would come to exemplify our entire vacation, we went to the “Dinosaur” ride and Kendrie, although technically tall enough, wasn’t so sure about it. She’s not too keen on being in the dark (see above Bugs Life comment) and although she had the courage to walk in, she balked at the last minute and didn’t want to go. That’s fine, I certainly don’t want to traumatize the poor child at the age of 5, (again, with the Bugs Life episode!) so I told Blaine to take the older two and Kendrie and I would wait out front.
Well, if you’ve never been to Disney, some marketing genius had the brilliant idea to have every “theme” ride empty into a gift shop, conveniently filled with t-shirts and key chains and stuffed animals and all other kinds of “must-have” items. Disney probably makes millions this way. We were waiting for them to get off the Dinosaur ride, and Kendrie asked for a dinosaur book. I said no, and she started in with, “But it’s not fair that they got to ride the ride … I wanted to ride that roller coaster earlier and I wasn’t tall enough and now this ride was too scary and I’m not getting to do anything!” (pout, pout, whine, whine) So I’m thinking to myself, “You know, she’s right. She is too short for a lot of these things and it’s only a few dollars. If it makes her happy, well, this trip *is* supposed to be about her, right?” and bought her the book. Brayden and Kellen get off the ride and naturally, were upset that I didn’t buy THEM anything, so I said, “Fine, find something you like and you can have a souvenier, too” and then Kendrie starts in with, “But if they get to buy something then I get to buy something else!” and Brayden says, “No Fair! How come she gets TWO things???” and I’m sitting back wondering how have I managed to raise the three most greedy, selfish children on the planet without even realizing it???
Anyway, we finished the day with the afternoon parade and a few runs down the Kali River Rapids, which were lots of fun. I was never so smug about the dollar-store rain ponchos I bought for the trip as I was that afternoon.
Then it was back to the village for the evening activity, a pool party with Shamu and other creatures from Sea World. Kellen got over his initial disappointment that Bubbles was unable to join us (I thought Bubbles was the name of Michael Jackson’s chimpanzee???) and he and Brayden and Kendrie limbo’d and hula-hooped the night away. It was really a lot of fun, as were all the activities at GKTW.
OK --- that’s all I’m going to put about the trip for now but I promise to finish up before the end of the week. I’m sure you’re all anxious for me to move on to the other pressing, interesting matters in my life that I write about on a regular basis --- like, …. well, ….. um, ...... wow, maybe I should drag this Make-A-Wish update out as long as possible!
First, though, I want to tell you about an initiative that Saturn Automotive is offering in an effort to help the National Bone Marrow Foundation. As you might or might not know, there are nowhere near enough people signed up to be bone marrow donors on the registry. You need only go to Taylor’s site and read the difficulty she had finding a donor to realize this is a serious problem. Unfortunately, getting signed up as a bone marrow donor isn’t as easy as checking “donor” on your drivers license (which I’m sure **ALL** of you have done also, right?????) I received an e-mail with the following information in it and want to share it with all of you in hopes if we can get the word out, we can help make this initiative a success. Here is a portion of the e-mail I received; I hope you will all visit the site and do what you can to help!
“Anyway.....Saturn is offering a wonderful promotion to help the Marrow Foundation. They are red wristbands in the style of Live Strong bands. People go to Saturn's site, and they can get two free wristbands. Proceeds from this promotion will go to The Marrow Foundation to help cover the costs of tissue typing new volunteers for the National Marrow Donor Program Registry. If people log on to the Saturn Web site (see below) between March 3 and March 8, they can order two FREE wristbands, and Saturn will contribute $.50 for each one ordered to The Marrow Foundation. According to Trevor's page, Saturn has made 69,000 wristbands available for this purpose with a potential value of $34,500 to The Marrow Foundation!:
Isn't that awesome? Here is the link!
Saturn Wristbands for Bone Marrow
I just ordered mine and the process is very easy! I thought perhaps you might want to mention it to your many readers and pass the word along before March 8th.”
As of right now, I have three bracelets that I never take off my left wrist … my yellow Live Strong band, my green Cure Search band, and of course, the one, the only, the original Julianna Banana Pink Wish Bracelet. I plan to add my red marrow band as soon as it arrives in the mail!
Hope you all had a great weekend; Kendrie played hard and is pooped. Her “boyfriend” Nicholas came over to play today and I think she’s worn out from chasing him all over the yard. I’m not sure if she’d know what to do with him if she caught him, but she sure thinks he’s cute! Maybe the fact she is so tired is why when it came time for meds tonight, the exact same meds she’s been taking every night since last August, she hid in the closet and wouldn’t come out???? Let me just say that Blaine did NOT see the humor in that!
Take care,
Kristie
*********************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: My parents just don’t seem to realize that I get tired of taking all this medicine! Bactrim, 6mp, steroids, methotrexate --- every time I turn around they’re coming at me with a vial, or a syringe, or a spoonful of applesauce. Enough, already!
BEST PART ABOUT HAVING CANCER TODAY: Woo-hoo! Mom got our Camp Sunshine stuff in the mail. Hey, all you out there in Caringbridge Land --- who else is going in April??!
Thursday, March 03, 2005
Make A Wish Recap
286 Days of Treatment to Go
First of all, let me say thanks to all of you who posted (often funny, occasionally hilarious --- do you guys actually *read* the guestbook?? You should! Some of you are just plain comical!) notes letting me know that your idyllic family vacations have, on occasion, been less than idyllic. More like spending time trapped in an elevator with that annoying brat from "Full House". You know, *that* kind of fun. From spending a small fortune on meals, to sibling rivalry, to tantrums, to throwing up on Main Street in Disney, thanks for sharing your stories and making me laugh.
I’ve decided the best comparison for our trip is to think of it as similar to giving birth. Going through it, there are moments that stink. Downright painful, in fact. But afterwards, you forget the pain and only remember the good. At least that’s what I’m telling myself, ha!
Our first day we drove to Orlando and checked in at Give Kids the World. Now, I’ll be honest. I have logged on to other Caringbridge Sites, of kids who had recently stayed at Give Kids the World, and read comments by parents who stated they simply couldn't find the words to explain how wonderful this facility is. I’ll admit, I’ve inwardly scoffed, “Then get a thesaurus and start typing!” because, truthfully, I have an insane need to live vicariously through other people. But guess what? After staying at GKTW myself with my family, I simply can’t find the words to explain how wonderful this facility is. Henri Landworth, a Holocaust survivor who immigrated to America with only twenty dollars in his pocket, is the founder. Just typing that sentence makes me feel guilty. I’m proud if I can manage to donate blood every eight weeks and stay caught up on the laundry, let alone raise millions and millions of dollars through hard work and perserverance … and look at the magnificent things this gentleman has accomplished during his life! You can click here if you’d like more information, or buy his book “Gift of Life” (proceeds help the village) for a truly interesting read.
Anyway! I don’t want to give away all the details and secrets and surprises, since I know lots of other families are going soon and I don’t want to ruin the anticipation for them. (Unless you really want to know, so you can plan your trip, then e-mail me privately and I’ll give you a heads up!) Suffice it to say this amazing village, run predominately by volunteers, gives new meaning to “Happiest Place on Earth”. Most likely, I guess, by the fact so many of the workers are there out of the goodness of their heart (duh, isn’t that what “volunteer” means???) Some are “regulars”, and some are like the retired couple we met from Maryland, who drove down in their RV and were staying for a month, volunteering every day. I wish I could explain the feeling it gives you, to witness so many people, working so hard to ensure you and your children are having a good time, helping in whatever way they can. (Even when your kids are intolerable hooligans who are too excited to remember to say "please" and "thank you" most of the time, and these kind people continue to help them anyway!)
The village itself is great, with lots of fun activities planned throughout the day and evenings. We enjoyed simply walking around looking at the whimsical decorations (I guess I enjoyed that more than the kids did), going for fifty thousand merry-go-round rides (the kids enjoyed that more than I did) and taking advantage of the fact the Ice Cream Shop opens at 8am (enjoyed equally by Escoe parents and kids alike! Yes, you really *can* have ice cream for breakfast if you want --- just try that in the real world, ha!)
To try and put it in words is impossible. How can you explain a spirit, a light-heartedness, an atmosphere of frivolity? Imagine living in a carnival and being greeted with a smile and a kind word no matter where you go. Knowing everyone wants you to be happy and goes out of their way to make your life easier for a few days...
I know, I know, you assume that must be what it is normally like in the Escoe household all the time! Sorry to say, you are wrong and our six days at Give Kids the World was a true slice of heaven.
Well, I’m rambling now and probably not making any sense. It’s hard to be entertaining, in a flip, funny way, about the part of our trip that touched my heart the most ….. I’ll be back to my normal, insufferable self soon. But for now, I’ll just post a few pictures from the village and then get on to the Theme Park portion (a.k.a, "Who made the pact with Satan and sold my children's personalities???"-portion) of our vacation in the next journal entry. Thanks again for your guestbook entries; we get a real kick out of hearing from you guys!
Love, Kristie
The view from outside our villa. Keep in mind, these 2-bedroom, 2-bath villas were bigger than some of the base housing Blaine and I have lived in! OK, well, those of you in the military know that's not always saying much, but it was a great set up ---- very generous accommodations!
Another highlight of the trip, getting to meet one of the All-Kids families we know online. This is Kendrie and her new friend Alexis. Alexis' mom and I have become friends and I was so happy to see them walk into the Gingerbread House (the GKTW restaurant) on our first night! Karen, Alexis, Rachel, the whole gang .... we really enjoyed getting to spend time with you guys!!!
This was one of the kids' favorite village activites -- an interactive Dino-Putt-Putt.
Uh, oh .... maybe it's a little too interactive. Where is that roaring coming from?????
"Hey, get me outta here!"
We even have a brand-new Baskin Robbins built near our home, but you can tell by looking at this photo that there's no comparison for fun! Who wouldn't want to eat an ice cream sundae at 8 in the morning, sitting in a big bowl? We loved it! I'm sure our dentist loves it, too.
No, there's no need to glance at your calendar and scratch your head (or any other body part) in confusion. One night each week at the Village is "Christmas" and we got to hang out with Santa for a while, in addition to doing crafts, games, playing in the snow (!) and enjoying ourselves.
More details to follow.............
First of all, let me say thanks to all of you who posted (often funny, occasionally hilarious --- do you guys actually *read* the guestbook?? You should! Some of you are just plain comical!) notes letting me know that your idyllic family vacations have, on occasion, been less than idyllic. More like spending time trapped in an elevator with that annoying brat from "Full House". You know, *that* kind of fun. From spending a small fortune on meals, to sibling rivalry, to tantrums, to throwing up on Main Street in Disney, thanks for sharing your stories and making me laugh.
I’ve decided the best comparison for our trip is to think of it as similar to giving birth. Going through it, there are moments that stink. Downright painful, in fact. But afterwards, you forget the pain and only remember the good. At least that’s what I’m telling myself, ha!
Our first day we drove to Orlando and checked in at Give Kids the World. Now, I’ll be honest. I have logged on to other Caringbridge Sites, of kids who had recently stayed at Give Kids the World, and read comments by parents who stated they simply couldn't find the words to explain how wonderful this facility is. I’ll admit, I’ve inwardly scoffed, “Then get a thesaurus and start typing!” because, truthfully, I have an insane need to live vicariously through other people. But guess what? After staying at GKTW myself with my family, I simply can’t find the words to explain how wonderful this facility is. Henri Landworth, a Holocaust survivor who immigrated to America with only twenty dollars in his pocket, is the founder. Just typing that sentence makes me feel guilty. I’m proud if I can manage to donate blood every eight weeks and stay caught up on the laundry, let alone raise millions and millions of dollars through hard work and perserverance … and look at the magnificent things this gentleman has accomplished during his life! You can click here if you’d like more information, or buy his book “Gift of Life” (proceeds help the village) for a truly interesting read.
Anyway! I don’t want to give away all the details and secrets and surprises, since I know lots of other families are going soon and I don’t want to ruin the anticipation for them. (Unless you really want to know, so you can plan your trip, then e-mail me privately and I’ll give you a heads up!) Suffice it to say this amazing village, run predominately by volunteers, gives new meaning to “Happiest Place on Earth”. Most likely, I guess, by the fact so many of the workers are there out of the goodness of their heart (duh, isn’t that what “volunteer” means???) Some are “regulars”, and some are like the retired couple we met from Maryland, who drove down in their RV and were staying for a month, volunteering every day. I wish I could explain the feeling it gives you, to witness so many people, working so hard to ensure you and your children are having a good time, helping in whatever way they can. (Even when your kids are intolerable hooligans who are too excited to remember to say "please" and "thank you" most of the time, and these kind people continue to help them anyway!)
The village itself is great, with lots of fun activities planned throughout the day and evenings. We enjoyed simply walking around looking at the whimsical decorations (I guess I enjoyed that more than the kids did), going for fifty thousand merry-go-round rides (the kids enjoyed that more than I did) and taking advantage of the fact the Ice Cream Shop opens at 8am (enjoyed equally by Escoe parents and kids alike! Yes, you really *can* have ice cream for breakfast if you want --- just try that in the real world, ha!)
To try and put it in words is impossible. How can you explain a spirit, a light-heartedness, an atmosphere of frivolity? Imagine living in a carnival and being greeted with a smile and a kind word no matter where you go. Knowing everyone wants you to be happy and goes out of their way to make your life easier for a few days...
I know, I know, you assume that must be what it is normally like in the Escoe household all the time! Sorry to say, you are wrong and our six days at Give Kids the World was a true slice of heaven.
Well, I’m rambling now and probably not making any sense. It’s hard to be entertaining, in a flip, funny way, about the part of our trip that touched my heart the most ….. I’ll be back to my normal, insufferable self soon. But for now, I’ll just post a few pictures from the village and then get on to the Theme Park portion (a.k.a, "Who made the pact with Satan and sold my children's personalities???"-portion) of our vacation in the next journal entry. Thanks again for your guestbook entries; we get a real kick out of hearing from you guys!
Love, Kristie
The view from outside our villa. Keep in mind, these 2-bedroom, 2-bath villas were bigger than some of the base housing Blaine and I have lived in! OK, well, those of you in the military know that's not always saying much, but it was a great set up ---- very generous accommodations!
Another highlight of the trip, getting to meet one of the All-Kids families we know online. This is Kendrie and her new friend Alexis. Alexis' mom and I have become friends and I was so happy to see them walk into the Gingerbread House (the GKTW restaurant) on our first night! Karen, Alexis, Rachel, the whole gang .... we really enjoyed getting to spend time with you guys!!!
This was one of the kids' favorite village activites -- an interactive Dino-Putt-Putt.
Uh, oh .... maybe it's a little too interactive. Where is that roaring coming from?????
"Hey, get me outta here!"
We even have a brand-new Baskin Robbins built near our home, but you can tell by looking at this photo that there's no comparison for fun! Who wouldn't want to eat an ice cream sundae at 8 in the morning, sitting in a big bowl? We loved it! I'm sure our dentist loves it, too.
No, there's no need to glance at your calendar and scratch your head (or any other body part) in confusion. One night each week at the Village is "Christmas" and we got to hang out with Santa for a while, in addition to doing crafts, games, playing in the snow (!) and enjoying ourselves.
More details to follow.............
Sunday, February 27, 2005
THANK YOU’S, THANK YOU’S, AND MORE THANK YOU’S
(But probably not the kind you expect)
PART 1 OF OUR MAW TRIP IN REVIEW
(Come on, you know me well enough by now to know I could never squeeze all seven days of the vacation into one single journal entry, don’t you???)
291 Days to Go
Let me begin this journal entry by mentioning what is hopefully obvious: I love my kids. As much as there are drops of water in the ocean, as many stars as there are in the night sky, that’s how much I love my kids. Now, with that said and over with, let me also tell you that I have never, in my 8 years, 2 weeks and 14 days as a parent, been as upset, disappointed, annoyed, angry, baffled or hurt by their obnoxious behavior as I was this past week in Orlando. While I have never actually *seen* Nanny 911, it's a pretty good bet that had there been talent scouts at Disney World, we would have been cast as the next family.
I know what you must be thinking ….. “Come on, what family vacation wouldn’t be complete without a little obnoxiousness???” No, I don’t mean the late-in-the-afternoon-everyone-is-worn-out-so-a-tantrum-or-two-is-inevitable kind of obnoxiousness that often takes place on vacations ……. or even the sort of “He’s touching me it’s my turn I had it first that’s my seat I called it first she hit me that’s not fair I hate you I hate you double infinity!” kind of moments that I could put a funny twist on and share with the rest of you. Pure and simple, I’m talking about three kids who started in on Day 1 and argued, fought, pouted, whined, complained, bitched, moaned, bickered, and quarreled their way through the Happiest Place on Earth. With each other. With their dad. With me.
As a parent, I am of course accustomed to being cast in the role of villain. In fact, I figure as long as I am thwarting their happiness and making their lives miserable at every turn, then I am doing my job correctly. But never have I been blamed, ruled, judged and convicted as “Totally Incompetent” as many times as I was this past week. I could do no right … by anyone, for anyone. I packed the wrong shoes. I packed the wrong jeans. The wrong shirts; wrong stuffed animals. Forgot to pack a swimming life vest for Kendrie. Went to Wal-Mart and purchased a new life vest, but didn’t buy a Scooby Doo life vest. Doesn’t matter that they didn’t SELL a Scooby Doo life vest, the one I bought was still wrong. According to each kid, depending on the time of day and the location and the axis of the earth, I liked the other kids better and favored them in every way possible. I picked the wrong activities, the wrong restaurants, the wrong snacks, the wrong souvenirs.
Quite frankly, I found the entire week to be exhausting.
I’ve never experienced that level of kvetching before. I felt like President Bush, trying to please the Republicans and the Democrats and the Independents, all at the same time. I failed miserably.
Blaine says I’m exaggerating; that I need to focus on the positive moments that took place. Thankfully, there were many. I don’t think the tale of their attitude is a complete exaggeration, but I’m not going to burden the rest of you with any more specific stories of their obnoxiousness. Scattered amongst the bitching and moaning were moments of joy, bliss and wonder. THOSE are the moments I’m going to focus on …. scrapbook ….. share with you. Hey, consider yourself lucky. By omitting the griping, the journal entries will be much shorter!
I will get on to the thank you’s regarding the moments of happiness in the next entry. For today, I want to thank the people who unknowingly helped me realize, sometimes in moments of complete frustration and despair, that the trip could have been worse.
Thank you to the mom at Guest Services Check Out at MGM Studios whose kid was pitching an absolute fit, for standing there calmly, then turning and giving me “the look” --- the look of camaraderie between Mothers Of Obnoxious Children, that says, but hey, we love them anyway.
Thank you to the mom of those teenagers at Universal, who I overheard say to them, “Would you two knock off the fighting already?” I mean hey, she’s been training her kids for ten years or so longer than I’ve been training mine. If HERS are still fighting, maybe I shouldn’t feel so bad.
And to the mom I witnessed at Islands of Adventure placing her young, screaming, flailing child into his stroller a little too emphatically for my taste ……. Well, if nothing else, thanks for making me feel better about myself for at least not resorting to body-slamming my children.
Thank you to the moms who discreetly turned their eyes and looked the other way when I reached the point of Total Motherhood Meltdown in Suess Landing. I mean really …. how proud can I be that my kids are most likely the first in history to be put in simultaneous time-outs in Who-Ville while I yell at them “that I have REALLY had it this time!”
Thank you to the mom I saw literally dragging her reluctant, hesitant, crying child by the arm, chasing after Tigger with an autograph book at the Crystal Palace Character Lunch … for letting me know that despite my schedules and lists of activities and laminated park maps, that there were still other trip-planners out there who were more inflexible and grimly determined than I was.
Thank you to the couple I watched fighting outside the Haunted Mansion (sorry, but there was really no where else to look) … the couple who are more than likely headed to the divorce attorney’s office tomorrow morning, for letting me know that no matter how annoyed Blaine and I got with the kids, we never took it out on each other in such a snappy, hateful manner.
To the mom who spanked her daughter, really hard, in the Curious George bathroom for playing with the water in the sink, in full view of Brayden and Kendrie and letting my daughters see that I am actually NOT the single meanest mom on the planet.
And finally, to the teenagers I witnessed speak and act so contemptuously and disrespectfully to their mother at Adventureland, and to their mom who just stood there and took the abuse --- I might have spent a good portion of the week (too much!) disciplining my children and correcting their rude behavior, but at least I know they won’t grow up to be as obnoxious as you.
Finally, Proof Positive Moments from the past week that the whole “stars in the sky and water drops in the ocean” comment is true and I really love my kids that insanely much, even though they raised the bar for bad behavior at a theme park:
1) I paid six dollars for a PB&J sandwich for Kellen and didn’t even gripe when he only ate half of it.
2) I not only purchased, but actually **wore** an extremely unflattering fanny pack for six days.
3) I not only allowed, but encouraged them to have ice cream for breakfast, despite Kellen’s comment that he wouldn’t eat ice cream for breakfast because it was unhealthy (this comment made while eating a bag of m&ms at 8am)
4) And finally, the fact that I didn’t beat them or abandon them in Orlando, both of which I seriously considered doing.
I’ll gather my thoughts, peruse the happy photographs that I took, and give you more of the details (positive ones only, I promise!) from our visit in the next entry. For now, it’s back to reality with a clinic visit for Kendrie tomorrow in Atlanta. I hope everyone had a great week in our absence!
Love, Kristie
PART 1 OF OUR MAW TRIP IN REVIEW
(Come on, you know me well enough by now to know I could never squeeze all seven days of the vacation into one single journal entry, don’t you???)
291 Days to Go
Let me begin this journal entry by mentioning what is hopefully obvious: I love my kids. As much as there are drops of water in the ocean, as many stars as there are in the night sky, that’s how much I love my kids. Now, with that said and over with, let me also tell you that I have never, in my 8 years, 2 weeks and 14 days as a parent, been as upset, disappointed, annoyed, angry, baffled or hurt by their obnoxious behavior as I was this past week in Orlando. While I have never actually *seen* Nanny 911, it's a pretty good bet that had there been talent scouts at Disney World, we would have been cast as the next family.
I know what you must be thinking ….. “Come on, what family vacation wouldn’t be complete without a little obnoxiousness???” No, I don’t mean the late-in-the-afternoon-everyone-is-worn-out-so-a-tantrum-or-two-is-inevitable kind of obnoxiousness that often takes place on vacations ……. or even the sort of “He’s touching me it’s my turn I had it first that’s my seat I called it first she hit me that’s not fair I hate you I hate you double infinity!” kind of moments that I could put a funny twist on and share with the rest of you. Pure and simple, I’m talking about three kids who started in on Day 1 and argued, fought, pouted, whined, complained, bitched, moaned, bickered, and quarreled their way through the Happiest Place on Earth. With each other. With their dad. With me.
As a parent, I am of course accustomed to being cast in the role of villain. In fact, I figure as long as I am thwarting their happiness and making their lives miserable at every turn, then I am doing my job correctly. But never have I been blamed, ruled, judged and convicted as “Totally Incompetent” as many times as I was this past week. I could do no right … by anyone, for anyone. I packed the wrong shoes. I packed the wrong jeans. The wrong shirts; wrong stuffed animals. Forgot to pack a swimming life vest for Kendrie. Went to Wal-Mart and purchased a new life vest, but didn’t buy a Scooby Doo life vest. Doesn’t matter that they didn’t SELL a Scooby Doo life vest, the one I bought was still wrong. According to each kid, depending on the time of day and the location and the axis of the earth, I liked the other kids better and favored them in every way possible. I picked the wrong activities, the wrong restaurants, the wrong snacks, the wrong souvenirs.
Quite frankly, I found the entire week to be exhausting.
I’ve never experienced that level of kvetching before. I felt like President Bush, trying to please the Republicans and the Democrats and the Independents, all at the same time. I failed miserably.
Blaine says I’m exaggerating; that I need to focus on the positive moments that took place. Thankfully, there were many. I don’t think the tale of their attitude is a complete exaggeration, but I’m not going to burden the rest of you with any more specific stories of their obnoxiousness. Scattered amongst the bitching and moaning were moments of joy, bliss and wonder. THOSE are the moments I’m going to focus on …. scrapbook ….. share with you. Hey, consider yourself lucky. By omitting the griping, the journal entries will be much shorter!
I will get on to the thank you’s regarding the moments of happiness in the next entry. For today, I want to thank the people who unknowingly helped me realize, sometimes in moments of complete frustration and despair, that the trip could have been worse.
Thank you to the mom at Guest Services Check Out at MGM Studios whose kid was pitching an absolute fit, for standing there calmly, then turning and giving me “the look” --- the look of camaraderie between Mothers Of Obnoxious Children, that says, but hey, we love them anyway.
Thank you to the mom of those teenagers at Universal, who I overheard say to them, “Would you two knock off the fighting already?” I mean hey, she’s been training her kids for ten years or so longer than I’ve been training mine. If HERS are still fighting, maybe I shouldn’t feel so bad.
And to the mom I witnessed at Islands of Adventure placing her young, screaming, flailing child into his stroller a little too emphatically for my taste ……. Well, if nothing else, thanks for making me feel better about myself for at least not resorting to body-slamming my children.
Thank you to the moms who discreetly turned their eyes and looked the other way when I reached the point of Total Motherhood Meltdown in Suess Landing. I mean really …. how proud can I be that my kids are most likely the first in history to be put in simultaneous time-outs in Who-Ville while I yell at them “that I have REALLY had it this time!”
Thank you to the mom I saw literally dragging her reluctant, hesitant, crying child by the arm, chasing after Tigger with an autograph book at the Crystal Palace Character Lunch … for letting me know that despite my schedules and lists of activities and laminated park maps, that there were still other trip-planners out there who were more inflexible and grimly determined than I was.
Thank you to the couple I watched fighting outside the Haunted Mansion (sorry, but there was really no where else to look) … the couple who are more than likely headed to the divorce attorney’s office tomorrow morning, for letting me know that no matter how annoyed Blaine and I got with the kids, we never took it out on each other in such a snappy, hateful manner.
To the mom who spanked her daughter, really hard, in the Curious George bathroom for playing with the water in the sink, in full view of Brayden and Kendrie and letting my daughters see that I am actually NOT the single meanest mom on the planet.
And finally, to the teenagers I witnessed speak and act so contemptuously and disrespectfully to their mother at Adventureland, and to their mom who just stood there and took the abuse --- I might have spent a good portion of the week (too much!) disciplining my children and correcting their rude behavior, but at least I know they won’t grow up to be as obnoxious as you.
Finally, Proof Positive Moments from the past week that the whole “stars in the sky and water drops in the ocean” comment is true and I really love my kids that insanely much, even though they raised the bar for bad behavior at a theme park:
1) I paid six dollars for a PB&J sandwich for Kellen and didn’t even gripe when he only ate half of it.
2) I not only purchased, but actually **wore** an extremely unflattering fanny pack for six days.
3) I not only allowed, but encouraged them to have ice cream for breakfast, despite Kellen’s comment that he wouldn’t eat ice cream for breakfast because it was unhealthy (this comment made while eating a bag of m&ms at 8am)
4) And finally, the fact that I didn’t beat them or abandon them in Orlando, both of which I seriously considered doing.
I’ll gather my thoughts, peruse the happy photographs that I took, and give you more of the details (positive ones only, I promise!) from our visit in the next entry. For now, it’s back to reality with a clinic visit for Kendrie tomorrow in Atlanta. I hope everyone had a great week in our absence!
Love, Kristie
Saturday, February 19, 2005
"PASSING THE BATON; A REST STOP IN THE MARATHON"
JESSE OWENS! BRUCE JENNER! ---- MICKEY MOUSE?????
300 Days to Go!
Wish us luck, we are loading up the car and getting ready for our Disney trip! I keep reminding myself, as long as I don’t forget her chemo, there’s nothing we can’t buy at Wal-Mart, right? (Repeated over and over and over to myself, in an attempt **not** to pack the entire house, which I have a tendency to do, as Blaine can unhappily attest!)
Anyway! In mentioning to friends and co-workers recently that we were fixing to take Kendrie on her Wish Trip, Blaine and I noticed a few interesting reactions. Friends were, of course, happy for us and wished us well. Those who don’t know us as well either seemed startled, as they assumed this must mean Kendrie had taken a turn for the worse, or they seemed perplexed that we were entitled to a trip --- after all, isn’t that for really, really sick kids?? Terminal kids? As those of you who follow this journal already know, I was also wondering if we were entitled and feeling a tad guilty for taking a Wish Trip. Is this “appropriate” for Kendrie, doing as well as she is, to be the recipient of such a kind gift?
Wednesday morning, I had one of those periodic parent-teacher meetings with Kendrie’s Pre-K teacher. Yes, she’s brilliant, yes, she’s a leader, yes, she’s the greatest thing since sliced bread (Kendrie, not the teacher) …. we already knew all that. Her teacher said absolutely no problem with her missing a week of school for a Disney trip, but seemed surprised it was a Wish Trip. Then, when I mentioned she would still be gone the following Monday for her chemo treatment in Atlanta, the teacher …. the one who has been with her all year …. said, “Still? She’s still getting chemo?? Even with all that hair?”
I was completely taken aback by that …. has she not been paying attention??? Where has she been? Of course, the assistant teacher is actually the one who works more with Kendrie, has taken such an interest in her, and is the one I warn every month when Kendrie is on steroids -- you know, when it’s important to notify the school staff of the upgraded tsunami-storm alert warning.
So I got to thinking …. do people not realize she is still on chemo because she looks good and feels pretty good and plays hard and does well in school? Does the treatment for leukemia go on so *bleeping* long that people outside close friends and family just forget about it?
For the record, here is a glimpse into Kendrie’s current treatment plan:
She is on 28-day repeating cycles of chemo.
Every night she takes one and a half pills of the chemo drug 6mp; except for Sunday, when she only takes one 6mp pill. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite.
Every Tuesday night, she takes seven and a half Methotrexate pills, an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches.
Four times each weekend (Sat. am and pm, and Sun. am and pm) she takes a dose of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts.
For fun, we’ve added to the mix one half of a Claritin pill each night, which has helped quite a bit with the cough she hadn’t been able to shake since Christmas.
For the first five days of each 28-day cycle, she takes the steroid Decadron; one pill each morning and one and a half pills each night. Decadron is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes (ya think?) increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability. That sounds just like me when I am pregnant. I have to laugh at that last one; "extreme irritability" … I’m taking these side effects listed directly out of Nancy Keene’s book “Childhood Leukemia” and while we fortunately don’t get most of them, boy oh boy, do I agree with THAT one!
She still has not learned to swallow a pill or gel cap, so we crush all her meds and give them to her in applesauce with a water chaser. By my estimation, by the time therapy is over, she will have eaten enough applesauce to fill an Olympic sized swimming pool.
Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at the clinic in Atlanta. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.
And last but not least, once every twelve weeks she has a spinal tap (ie, lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can’t cross the blood-brain barrier.
That’s pretty much it in a nutshell; the maintenance portion of Kendrie’s treatment protocol. The first ten months of therapy were considered “intense” …. This maintenance portion is less harsh, but lasts another sixteen months. So, two years and two months total. If Kendrie were a boy (like she prays for every night, ha!) she would get an additional year of maintenance therapy due to the risk of testicular relapse. If she were to relapse, we would either be looking at some form of transplant, or we would scratch all the chemo she's already done and start over, from square one, with a harsher protocol.
This month, she only missed one half day of school because she wasn’t feeling well (it’s usually one or two half days a month that she misses due to the steroids) but we did have our first episode of “chemo burns” on her palms; small, white blisters all over her palms that itched like crazy. The school nurse called me twice this month to request permission to give her oral zofran, her anti-nausea medication. The school nurse also calls me at least once or twice a week to update me on the status of viruses/flu/chicken pox/etc at her school. She is a HUGE blessing to me!
So, where exactly am I going with all this???? Besides boring you to tears?
I think (and am grateful) that through local organizations like Camp Sunshine and The Lighthouse Retreat, that we Georgia families are in the wonderful position of meeting lots of other families, often dealing with other kinds of cancers. Some of my newest, most-admired friends are the moms of kids being treated for medulloblastoma, neuroblastoma, and rhabdomyosarcoma. Another woman, who I am so happy to have met and consider a friend, is a mom of a germ cell tumor patient. Her site is Mary Grace. She and I and another mom were having dinner a few weeks ago (Kendrie was the only kid there with hair, how odd did that feel?!?) :) and she was talking about Mary Grace's upcoming surgery. She was diagnosed last August and has gone through chemo, radiation, and now surgery to remove the tumor. I'm thrilled to report the surgery was this week and things went great --- Mary Grace is cancer free!! I truly couldn’t be happier for this wonderful family! And, I admit that I felt a twinge of envy that the treatment protocol for leukemia can’t be whittled down to six months, also. Then I felt ashamed of the envy, since these other cancers seem so much “worse”. I mean, even the doctors say leukemia is the “good” kind of cancer for your kid to get. Who knew there was such a thing???
I also got to spend time with past weekend with two neuroblastoma moms, Brandon's mom and Camp Jacks' mom. We talked about how some protocols are longer than others, and what some of the different protocols entail, and it was a good reminder to me that as envious as I might be of the shorter protocols, the optimistic survival rates for leukemia make it easier for me to face the challenge. Yes, the long treatment stinks and yes, some kids don't handle the side effects of chemo as well as Kendrie has. But ultimately, the vast majority of kids diagnosed with leukemia will go on to lead long and healthy lives. I can't imagine being told my child only has a 30 or 40 or 50 percent chance to begin with ........ and heaven forbid they relapse, because there is NO cure for relapse with some of these cancers.
Camp Jack's mom summed it up perfectly: Their (neuroblastoma) treatment is like a sprint-- fast and furious and they're desperate to get to the finish line. Leukemia treatment is like a long distance, marathon run. We need endurance and longevity and sometimes it seems like the end will never get here. Does that mean their treatment is easier because it's shorter? No, of course not. Or that our treatment is any less terrifying because the chances for survival are better? No, of course not again. We're all in this together. Truthfully, I feel fortunate to have met other families who can help me keep it all in perspective. Ours sucks; theirs sucks. Pediatric cancer pretty much sucks. Did you see the movie Legally Blonde 2, where Reese Whitherspoons’ character instantly bonds with a woman she meets who wears the same sorority ring as she does? Believe me when I tell you there is a bond you feel with another parent who has also heard the words, “I’m sorry, your child has cancer”. The kind of cancer, and the length of treatment, don’t matter. They all stink.
My point, although it took me a good twenty minutes and who knows how many words to get here, is that yes, Kendrie looks good and feels good …. so good that her own teacher thought she was done with chemo (!) But she has still gone through a lot and I’m not going to minimize that just because our outlook is hopeful. Next week, when we are wearing our Make-A-Wish buttons at Disney like the badges of courage they are, and being allowed to jump to the front of lines, I refuse to feel guilty about it just because she is doing well and doesn’t fit the mold of “really, really sick Make-A-Wish recipient.” It has been a life-altering sixteen months so far. We are ready for a brief respite from our marathon, where we can pass the baton to a big black mouse with funny pants, even if only for a few days. My plan is to return home refreshed and rejuvenated, ready to tackle the remaining ten months head-on. And, do what I can in the meantime to encourage our fellow racers …. whether they are sprinting to the finish, or trudging along in an endurance race. We are all racing … we all get tired at times. So, there it is. My justification for taking my kids on this Wish Trip to Orlando. For what Kendrie has gone through and for what Kellen and Brayden have sacrificed (whether they knew it or not) along the way.
One last mention before I sign off for the night (actually, at this point, it will be technically “morning” before I get the update finished) -- Kendrie received her first hair cut yesterday. Not my choice, and not something I am happy about. I had taken Kellen for a desperately-needed trim and Kendrie announced about a million times that she wanted a haircut. She’s been asking for a month or two, ever since it got too long to spike on the top. I kept asking her if she was sure because deep down I was hoping she would change her mind. But she insisted, so I said ok and up into the chair she climbed. I’ll admit I got a little misty-eyed, thinking about how far we had come and what a milestone this was. Then, I’m not quite sure what the hairdresser was doing, but she mentioned something about spiking it and yet retaining a sense of femininity at the same time. So, Kendrie is now the proud owner of the World’s Worst Pre-School White Trash Mullet you have ever seen in your life. And, she refuses to wear it spiked. That was money well spent, don't you think? Don’t be surprised when you see me putting those funny mouse ears on her head in every picture from Disney. How long until it grows out again???
We’ll update when we get back!! I hope you all have a great week,
Love,
Kristie
PS. I would like to let all of you know that I was donating blood on Tuesday and the technician mentioned to me that the state of Georgia is critically short of blood right now. They are even planning to do a media-appeal for donors. If you have a spare hour, please consider donating. ALL states, not just Georgia!! Thank you!
*********************************************
KENDRIE’S PERSPECTIVE:
My perspective is that my mom is a blabbering fool and there is no need for me to make this update any longer. See you in Florida, baby!
300 Days to Go!
Wish us luck, we are loading up the car and getting ready for our Disney trip! I keep reminding myself, as long as I don’t forget her chemo, there’s nothing we can’t buy at Wal-Mart, right? (Repeated over and over and over to myself, in an attempt **not** to pack the entire house, which I have a tendency to do, as Blaine can unhappily attest!)
Anyway! In mentioning to friends and co-workers recently that we were fixing to take Kendrie on her Wish Trip, Blaine and I noticed a few interesting reactions. Friends were, of course, happy for us and wished us well. Those who don’t know us as well either seemed startled, as they assumed this must mean Kendrie had taken a turn for the worse, or they seemed perplexed that we were entitled to a trip --- after all, isn’t that for really, really sick kids?? Terminal kids? As those of you who follow this journal already know, I was also wondering if we were entitled and feeling a tad guilty for taking a Wish Trip. Is this “appropriate” for Kendrie, doing as well as she is, to be the recipient of such a kind gift?
Wednesday morning, I had one of those periodic parent-teacher meetings with Kendrie’s Pre-K teacher. Yes, she’s brilliant, yes, she’s a leader, yes, she’s the greatest thing since sliced bread (Kendrie, not the teacher) …. we already knew all that. Her teacher said absolutely no problem with her missing a week of school for a Disney trip, but seemed surprised it was a Wish Trip. Then, when I mentioned she would still be gone the following Monday for her chemo treatment in Atlanta, the teacher …. the one who has been with her all year …. said, “Still? She’s still getting chemo?? Even with all that hair?”
I was completely taken aback by that …. has she not been paying attention??? Where has she been? Of course, the assistant teacher is actually the one who works more with Kendrie, has taken such an interest in her, and is the one I warn every month when Kendrie is on steroids -- you know, when it’s important to notify the school staff of the upgraded tsunami-storm alert warning.
So I got to thinking …. do people not realize she is still on chemo because she looks good and feels pretty good and plays hard and does well in school? Does the treatment for leukemia go on so *bleeping* long that people outside close friends and family just forget about it?
For the record, here is a glimpse into Kendrie’s current treatment plan:
She is on 28-day repeating cycles of chemo.
Every night she takes one and a half pills of the chemo drug 6mp; except for Sunday, when she only takes one 6mp pill. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite.
Every Tuesday night, she takes seven and a half Methotrexate pills, an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches.
Four times each weekend (Sat. am and pm, and Sun. am and pm) she takes a dose of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts.
For fun, we’ve added to the mix one half of a Claritin pill each night, which has helped quite a bit with the cough she hadn’t been able to shake since Christmas.
For the first five days of each 28-day cycle, she takes the steroid Decadron; one pill each morning and one and a half pills each night. Decadron is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes (ya think?) increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability. That sounds just like me when I am pregnant. I have to laugh at that last one; "extreme irritability" … I’m taking these side effects listed directly out of Nancy Keene’s book “Childhood Leukemia” and while we fortunately don’t get most of them, boy oh boy, do I agree with THAT one!
She still has not learned to swallow a pill or gel cap, so we crush all her meds and give them to her in applesauce with a water chaser. By my estimation, by the time therapy is over, she will have eaten enough applesauce to fill an Olympic sized swimming pool.
Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at the clinic in Atlanta. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.
And last but not least, once every twelve weeks she has a spinal tap (ie, lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can’t cross the blood-brain barrier.
That’s pretty much it in a nutshell; the maintenance portion of Kendrie’s treatment protocol. The first ten months of therapy were considered “intense” …. This maintenance portion is less harsh, but lasts another sixteen months. So, two years and two months total. If Kendrie were a boy (like she prays for every night, ha!) she would get an additional year of maintenance therapy due to the risk of testicular relapse. If she were to relapse, we would either be looking at some form of transplant, or we would scratch all the chemo she's already done and start over, from square one, with a harsher protocol.
This month, she only missed one half day of school because she wasn’t feeling well (it’s usually one or two half days a month that she misses due to the steroids) but we did have our first episode of “chemo burns” on her palms; small, white blisters all over her palms that itched like crazy. The school nurse called me twice this month to request permission to give her oral zofran, her anti-nausea medication. The school nurse also calls me at least once or twice a week to update me on the status of viruses/flu/chicken pox/etc at her school. She is a HUGE blessing to me!
So, where exactly am I going with all this???? Besides boring you to tears?
I think (and am grateful) that through local organizations like Camp Sunshine and The Lighthouse Retreat, that we Georgia families are in the wonderful position of meeting lots of other families, often dealing with other kinds of cancers. Some of my newest, most-admired friends are the moms of kids being treated for medulloblastoma, neuroblastoma, and rhabdomyosarcoma. Another woman, who I am so happy to have met and consider a friend, is a mom of a germ cell tumor patient. Her site is Mary Grace. She and I and another mom were having dinner a few weeks ago (Kendrie was the only kid there with hair, how odd did that feel?!?) :) and she was talking about Mary Grace's upcoming surgery. She was diagnosed last August and has gone through chemo, radiation, and now surgery to remove the tumor. I'm thrilled to report the surgery was this week and things went great --- Mary Grace is cancer free!! I truly couldn’t be happier for this wonderful family! And, I admit that I felt a twinge of envy that the treatment protocol for leukemia can’t be whittled down to six months, also. Then I felt ashamed of the envy, since these other cancers seem so much “worse”. I mean, even the doctors say leukemia is the “good” kind of cancer for your kid to get. Who knew there was such a thing???
I also got to spend time with past weekend with two neuroblastoma moms, Brandon's mom and Camp Jacks' mom. We talked about how some protocols are longer than others, and what some of the different protocols entail, and it was a good reminder to me that as envious as I might be of the shorter protocols, the optimistic survival rates for leukemia make it easier for me to face the challenge. Yes, the long treatment stinks and yes, some kids don't handle the side effects of chemo as well as Kendrie has. But ultimately, the vast majority of kids diagnosed with leukemia will go on to lead long and healthy lives. I can't imagine being told my child only has a 30 or 40 or 50 percent chance to begin with ........ and heaven forbid they relapse, because there is NO cure for relapse with some of these cancers.
Camp Jack's mom summed it up perfectly: Their (neuroblastoma) treatment is like a sprint-- fast and furious and they're desperate to get to the finish line. Leukemia treatment is like a long distance, marathon run. We need endurance and longevity and sometimes it seems like the end will never get here. Does that mean their treatment is easier because it's shorter? No, of course not. Or that our treatment is any less terrifying because the chances for survival are better? No, of course not again. We're all in this together. Truthfully, I feel fortunate to have met other families who can help me keep it all in perspective. Ours sucks; theirs sucks. Pediatric cancer pretty much sucks. Did you see the movie Legally Blonde 2, where Reese Whitherspoons’ character instantly bonds with a woman she meets who wears the same sorority ring as she does? Believe me when I tell you there is a bond you feel with another parent who has also heard the words, “I’m sorry, your child has cancer”. The kind of cancer, and the length of treatment, don’t matter. They all stink.
My point, although it took me a good twenty minutes and who knows how many words to get here, is that yes, Kendrie looks good and feels good …. so good that her own teacher thought she was done with chemo (!) But she has still gone through a lot and I’m not going to minimize that just because our outlook is hopeful. Next week, when we are wearing our Make-A-Wish buttons at Disney like the badges of courage they are, and being allowed to jump to the front of lines, I refuse to feel guilty about it just because she is doing well and doesn’t fit the mold of “really, really sick Make-A-Wish recipient.” It has been a life-altering sixteen months so far. We are ready for a brief respite from our marathon, where we can pass the baton to a big black mouse with funny pants, even if only for a few days. My plan is to return home refreshed and rejuvenated, ready to tackle the remaining ten months head-on. And, do what I can in the meantime to encourage our fellow racers …. whether they are sprinting to the finish, or trudging along in an endurance race. We are all racing … we all get tired at times. So, there it is. My justification for taking my kids on this Wish Trip to Orlando. For what Kendrie has gone through and for what Kellen and Brayden have sacrificed (whether they knew it or not) along the way.
One last mention before I sign off for the night (actually, at this point, it will be technically “morning” before I get the update finished) -- Kendrie received her first hair cut yesterday. Not my choice, and not something I am happy about. I had taken Kellen for a desperately-needed trim and Kendrie announced about a million times that she wanted a haircut. She’s been asking for a month or two, ever since it got too long to spike on the top. I kept asking her if she was sure because deep down I was hoping she would change her mind. But she insisted, so I said ok and up into the chair she climbed. I’ll admit I got a little misty-eyed, thinking about how far we had come and what a milestone this was. Then, I’m not quite sure what the hairdresser was doing, but she mentioned something about spiking it and yet retaining a sense of femininity at the same time. So, Kendrie is now the proud owner of the World’s Worst Pre-School White Trash Mullet you have ever seen in your life. And, she refuses to wear it spiked. That was money well spent, don't you think? Don’t be surprised when you see me putting those funny mouse ears on her head in every picture from Disney. How long until it grows out again???
We’ll update when we get back!! I hope you all have a great week,
Love,
Kristie
PS. I would like to let all of you know that I was donating blood on Tuesday and the technician mentioned to me that the state of Georgia is critically short of blood right now. They are even planning to do a media-appeal for donors. If you have a spare hour, please consider donating. ALL states, not just Georgia!! Thank you!
*********************************************
KENDRIE’S PERSPECTIVE:
My perspective is that my mom is a blabbering fool and there is no need for me to make this update any longer. See you in Florida, baby!
Monday, February 14, 2005
Our Weekend Trip to Atlanta
(aka… How many tantrums can one small child throw in a 12-hour period?)
(aka… Did somebody put her on steroids and not tell us??)
304 Days to Go
What’s great about our cancer journey? The friendships we have made, and are continuing to make, along the way.
What’s *really* great about our cancer journey? When these new friends invite us into their homes and into their lives and we get to spend quality time together as families.
What stinks about our cancer journey? Well, the fact that we’re on it to begin with is kind of stinky.
What *really* stinks about our cancer journey? When the aforementioned quality time, with the aforementioned new friends, is tainted by the presence of a child who acts so ugly you worry your first invitation to Atlanta will also be your last.
Mike, Kristin, Ryan and Brandon …. Let me APOLOGIZE up-front for the way our weekend, wonderful in every other way, ended on Sunday with the appearance of the 8th dwarf; "Crabby"!!
We had a really nice time this weekend on our trip to Atlanta, with the exception of when Satan showed up and possessed our youngest daughter. We had received an invitation to a special showing of the Big Apple Circus at Stone Mountain in Atlanta from Camp Sunshine, but what made it even more special was the invitation we received to drive up the day before and spend the night with Brandon’s family, the Connors. If you’ve never visited Brandon’s site, you should do so for two reasons. Well, okay, three reasons. First of all, he’s just darn cute. Second, the story of his neuroblastoma diagnosis and cure is truly proof of a modern-day miracle and sometimes you just need a reminder that good things do happen. Third, his mom Kristin is doing an amazing job in her position at CureSearch to raise funds and awareness to find a cure for **ALL** childhood cancers. I focus primarily in this journal on leukemia because that is the cancer that has so affected our life. But there are, sadly, so many other cancers out there and CureSearch, and the people like Kristin who work there, are making a difference. Kristin, you rock!
But I digress. We showed up at the Connors and the kids were thrilled to see Ryan and Brandon. The best part of the afternoon was feeding the geese in the pond across the street. The lighting was really nice, so you’ll have to excuse me while I subject you to a visual of some of the photos we took. Most of the photos were of the backs of the kids’ heads, as they ran away from me, chasing the geese. But I did get a couple of cute ones.
The kids being silly, l-r, Kendrie, Ryan, Kellen and Brayden
Oh, wait, now THIS is being silly!
Hey, everybody needs a lift sometimes, right?
Then, the evening got even better when CampJack and his crew joined us for dinner. Jen and Stephanie, we’ve been following Jack’s site for months and we really enjoyed getting to visit with you guys! Your kids are so adorable and I want to thank you for humoring Kendrie and her obsession with Baby Kate.
L-R, CampJack, Brayden, Brandon, Ryan, and Kellen, with Kendrie doing some weird lounge-pose on the top of the sofa ... who knows?
The evening was topped off perfectly with birthday cake for Brayden, who turned eight this weekend! (Let’s not even go into the rhetorical “where has the time gone” issue; I feel old enough as it is.)
So, a nice afternoon, a nice evening …….. then just what exactly went wrong?
We woke up the next morning and everyone *seemed* fine ….. but we got our first glimpse of Little Miss Uncooperative at breakfast. Despite the yummy, hot pancakes and fresh fruit that Kristin was serving, Kendrie insisted on eating all of their go-gurt out of the fridge. Literally, all of it. Like five packages. Kristin, I’ll send a replacement box soon!
Still, that wasn’t too terribly bad (more embarrassing than anything, actually.) Then, we went upstairs to get dressed for the circus and ……. Brace yourselves …….. I had packed the dreaded thermal shirt with flowers on it and pink boots for Kendrie. (GASP! --- THE AUDACITY OF MOM!!) Nope, she wasn’t wearing it, no how, no way. And she let us know her displeasure both vocally and with body language and facial expressions. “Pouting” doesn’t begin to cover it.
Truly, I wouldn’t have cared if she had worn the same sweatshirt as the day before, but we had already packed up the suitcase and carried it out to the car, so what started as a simple wardrobe malfunction turned into a classic power struggle between parent and child. With higher stakes, since it was happening in someone else’s home. Actually, that should let Kristin and Mike know how much we like them and how comfortable we felt in their home, since we didn’t just automatically give in. (Or is that my lame justification for allowing Kendrie’s streak of obnoxiousness to continue that morning?? “Hey, Mike, Kristin, we like you so much and are so happy to be guests in your home that we’re going to let our daughter throw a complete temper tantrum for your viewing pleasure!!!”)
So, despite our promise (threat? Same thing?) that she wouldn’t be allowed out of the van if she didn’t get dressed, it was off to the circus we went, with Kendrie in her pajamas. When we arrived, I took Brayden and Kellen inside and told Kendrie she could just sit out in the car until she was ready to get dressed. I’m not quite sure what happened, but about half an hour later she showed up ringside with Blaine ………. wearing the dirty clothes from the day before. So technically, I think she might have won that one.
The circus was a good one, I thought. It was small, a one-ring affair, but it was nice that every seat in the tent was extremely close to the action (a little too close, for some of those people on the other side of the ring during the horse show, if you know what I mean when horses aren’t wearing those little diaper bags.) Many thanks to Camp Sunshine for inviting us as guests and hosting this special event for all the campers and their families. We saw several families from previous Family Weekends, and even two families from my online group; Jacob and Madie.
L-R, Jordan (Jacob's older sister), Madie, Kendrie, CampJack, and Jacob. Notice Kendrie is in the same shirt as the day before .... and you thought I was joking in my previous journal entry when I said people must assume we can't afford new clothes for our children because she wears the same thing over and over and over?!?!
The only downfall to the circus was when some lady asked me as we were leaving … not once, not twice (because I was unsuccessfully ignoring her) but THREE times, “When is your baby due?” Thank you, Jacob’s mom Tiffany, for pretending you didn’t hear that.
Then, I don’t know if it was delayed sugar shock from the cotton candy, or if Jacob slipped Kendrie some of the meds from his steroid pulse this week, but after the show … wow, did it get ugly. (What does that say? Jacob was on steroids and he STILL acted nicer than Kendrie did!)
First, we had a chance to meet Chandler Booth’s family, about whom we have heard so many nice things. Chandlers’ mom had brought sucker-treats for all the kids (thank you, Kim!) and I let Brayden choose hers first since it was her birthday. I had one red, one blue and one green. Easy enough, since blue is Kendrie’s favorite color. Always has been. She ALWAYS picks blue. So Brayden picked red. Big mistake. Then, I announced it was Kellen’s turn to select the movie for the ride home. (It really, truly was. I keep pretty close tabs on that, and even use a calendar to keep track on occasion.) Kendrie wanted to watch “Extreme Primate”. Kellen selected “Spirit”. Big mistake.
It took us so long to get out of the parking lot that people were driving by, assuming we were having car trouble. Then they heard the screaming and just kept on driving. I was still annoyed from the pregnancy comment and quite frankly, had had just about enough from Little Miss Sunshine.
Thankfully, after a few short but painful miles, she focused her energies on pouting out the window, which while ugly to look at, doesn’t bother my ears near as much. So we made it home safe and sound and in one piece. Lucky for her.
The weekend ended on a sad note, when we discovered one of the boys on our list-serve has relapsed. Our thoughts are going out to Victor and his family. Victor had just finished his ALL treatment protocol in October and had recently had surgery to have his port taken out. Now, today, he was back in surgery having a new port put back in, the first step for him as his battle starts all over again. Please keep Victor in your thoughts and if you have a moment, stop by his guestbook and let him know you are rooting for him. He conquered leukemia once …. Let’s cheer him on as he prepares to do it again.
In the meantime, I hope you all have a great week, and that you had a Happy Valentines Day!
Love,
Kristie
****************************************************
KENDRIE’S PERSEPCTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
My dad has that icky stomach bug that is going around and my mom was a complete freak about me not getting too close to him.
BEST PART ABOUT HAVING CANCER TODAY:
It was MY day to pull a link off of our Disney chain in the kitchen. Hey, wait, did I mention to you that we are leaving for Disney in just six days??? Woo-hoo!
(aka… Did somebody put her on steroids and not tell us??)
304 Days to Go
What’s great about our cancer journey? The friendships we have made, and are continuing to make, along the way.
What’s *really* great about our cancer journey? When these new friends invite us into their homes and into their lives and we get to spend quality time together as families.
What stinks about our cancer journey? Well, the fact that we’re on it to begin with is kind of stinky.
What *really* stinks about our cancer journey? When the aforementioned quality time, with the aforementioned new friends, is tainted by the presence of a child who acts so ugly you worry your first invitation to Atlanta will also be your last.
Mike, Kristin, Ryan and Brandon …. Let me APOLOGIZE up-front for the way our weekend, wonderful in every other way, ended on Sunday with the appearance of the 8th dwarf; "Crabby"!!
We had a really nice time this weekend on our trip to Atlanta, with the exception of when Satan showed up and possessed our youngest daughter. We had received an invitation to a special showing of the Big Apple Circus at Stone Mountain in Atlanta from Camp Sunshine, but what made it even more special was the invitation we received to drive up the day before and spend the night with Brandon’s family, the Connors. If you’ve never visited Brandon’s site, you should do so for two reasons. Well, okay, three reasons. First of all, he’s just darn cute. Second, the story of his neuroblastoma diagnosis and cure is truly proof of a modern-day miracle and sometimes you just need a reminder that good things do happen. Third, his mom Kristin is doing an amazing job in her position at CureSearch to raise funds and awareness to find a cure for **ALL** childhood cancers. I focus primarily in this journal on leukemia because that is the cancer that has so affected our life. But there are, sadly, so many other cancers out there and CureSearch, and the people like Kristin who work there, are making a difference. Kristin, you rock!
But I digress. We showed up at the Connors and the kids were thrilled to see Ryan and Brandon. The best part of the afternoon was feeding the geese in the pond across the street. The lighting was really nice, so you’ll have to excuse me while I subject you to a visual of some of the photos we took. Most of the photos were of the backs of the kids’ heads, as they ran away from me, chasing the geese. But I did get a couple of cute ones.
The kids being silly, l-r, Kendrie, Ryan, Kellen and Brayden
Oh, wait, now THIS is being silly!
Hey, everybody needs a lift sometimes, right?
Then, the evening got even better when CampJack and his crew joined us for dinner. Jen and Stephanie, we’ve been following Jack’s site for months and we really enjoyed getting to visit with you guys! Your kids are so adorable and I want to thank you for humoring Kendrie and her obsession with Baby Kate.
L-R, CampJack, Brayden, Brandon, Ryan, and Kellen, with Kendrie doing some weird lounge-pose on the top of the sofa ... who knows?
The evening was topped off perfectly with birthday cake for Brayden, who turned eight this weekend! (Let’s not even go into the rhetorical “where has the time gone” issue; I feel old enough as it is.)
So, a nice afternoon, a nice evening …….. then just what exactly went wrong?
We woke up the next morning and everyone *seemed* fine ….. but we got our first glimpse of Little Miss Uncooperative at breakfast. Despite the yummy, hot pancakes and fresh fruit that Kristin was serving, Kendrie insisted on eating all of their go-gurt out of the fridge. Literally, all of it. Like five packages. Kristin, I’ll send a replacement box soon!
Still, that wasn’t too terribly bad (more embarrassing than anything, actually.) Then, we went upstairs to get dressed for the circus and ……. Brace yourselves …….. I had packed the dreaded thermal shirt with flowers on it and pink boots for Kendrie. (GASP! --- THE AUDACITY OF MOM!!) Nope, she wasn’t wearing it, no how, no way. And she let us know her displeasure both vocally and with body language and facial expressions. “Pouting” doesn’t begin to cover it.
Truly, I wouldn’t have cared if she had worn the same sweatshirt as the day before, but we had already packed up the suitcase and carried it out to the car, so what started as a simple wardrobe malfunction turned into a classic power struggle between parent and child. With higher stakes, since it was happening in someone else’s home. Actually, that should let Kristin and Mike know how much we like them and how comfortable we felt in their home, since we didn’t just automatically give in. (Or is that my lame justification for allowing Kendrie’s streak of obnoxiousness to continue that morning?? “Hey, Mike, Kristin, we like you so much and are so happy to be guests in your home that we’re going to let our daughter throw a complete temper tantrum for your viewing pleasure!!!”)
So, despite our promise (threat? Same thing?) that she wouldn’t be allowed out of the van if she didn’t get dressed, it was off to the circus we went, with Kendrie in her pajamas. When we arrived, I took Brayden and Kellen inside and told Kendrie she could just sit out in the car until she was ready to get dressed. I’m not quite sure what happened, but about half an hour later she showed up ringside with Blaine ………. wearing the dirty clothes from the day before. So technically, I think she might have won that one.
The circus was a good one, I thought. It was small, a one-ring affair, but it was nice that every seat in the tent was extremely close to the action (a little too close, for some of those people on the other side of the ring during the horse show, if you know what I mean when horses aren’t wearing those little diaper bags.) Many thanks to Camp Sunshine for inviting us as guests and hosting this special event for all the campers and their families. We saw several families from previous Family Weekends, and even two families from my online group; Jacob and Madie.
L-R, Jordan (Jacob's older sister), Madie, Kendrie, CampJack, and Jacob. Notice Kendrie is in the same shirt as the day before .... and you thought I was joking in my previous journal entry when I said people must assume we can't afford new clothes for our children because she wears the same thing over and over and over?!?!
The only downfall to the circus was when some lady asked me as we were leaving … not once, not twice (because I was unsuccessfully ignoring her) but THREE times, “When is your baby due?” Thank you, Jacob’s mom Tiffany, for pretending you didn’t hear that.
Then, I don’t know if it was delayed sugar shock from the cotton candy, or if Jacob slipped Kendrie some of the meds from his steroid pulse this week, but after the show … wow, did it get ugly. (What does that say? Jacob was on steroids and he STILL acted nicer than Kendrie did!)
First, we had a chance to meet Chandler Booth’s family, about whom we have heard so many nice things. Chandlers’ mom had brought sucker-treats for all the kids (thank you, Kim!) and I let Brayden choose hers first since it was her birthday. I had one red, one blue and one green. Easy enough, since blue is Kendrie’s favorite color. Always has been. She ALWAYS picks blue. So Brayden picked red. Big mistake. Then, I announced it was Kellen’s turn to select the movie for the ride home. (It really, truly was. I keep pretty close tabs on that, and even use a calendar to keep track on occasion.) Kendrie wanted to watch “Extreme Primate”. Kellen selected “Spirit”. Big mistake.
It took us so long to get out of the parking lot that people were driving by, assuming we were having car trouble. Then they heard the screaming and just kept on driving. I was still annoyed from the pregnancy comment and quite frankly, had had just about enough from Little Miss Sunshine.
Thankfully, after a few short but painful miles, she focused her energies on pouting out the window, which while ugly to look at, doesn’t bother my ears near as much. So we made it home safe and sound and in one piece. Lucky for her.
The weekend ended on a sad note, when we discovered one of the boys on our list-serve has relapsed. Our thoughts are going out to Victor and his family. Victor had just finished his ALL treatment protocol in October and had recently had surgery to have his port taken out. Now, today, he was back in surgery having a new port put back in, the first step for him as his battle starts all over again. Please keep Victor in your thoughts and if you have a moment, stop by his guestbook and let him know you are rooting for him. He conquered leukemia once …. Let’s cheer him on as he prepares to do it again.
In the meantime, I hope you all have a great week, and that you had a Happy Valentines Day!
Love,
Kristie
****************************************************
KENDRIE’S PERSEPCTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
My dad has that icky stomach bug that is going around and my mom was a complete freak about me not getting too close to him.
BEST PART ABOUT HAVING CANCER TODAY:
It was MY day to pull a link off of our Disney chain in the kitchen. Hey, wait, did I mention to you that we are leaving for Disney in just six days??? Woo-hoo!
Thursday, February 10, 2005
"NO FRILLS FOR ME, PLEASE"
(308 Days to Go!)
OK, I need to discuss with you guys a serious problem I am having. Could someone please tell me WHEN the second X chromosome that Kendrie has is going to kick in? Puberty? College? EVER???? I’m still waiting for the adorable little girl who wants to play dress up in fairy princess costumes, wear her mommy’s make up and jewelry, and play house with her Barbies for hours. Instead, we’ve got an adorable little girl who hates to wear anything pink, prefers denim to tu-tu-s, and chooses soccer and baseball over dolls any day.
Now, I know you must be thinking, “And just why is that a problem?” Yeah, ok, I have no problems with tomboys, I’ll admit that. But, I’ll tell you why! Because our first child was a girly-girl, so all of Kendrie’s hand-me-downs are girl-ish. Or at least relatively girl-ish. She owns exactly three long-sleeve t-shirts/sweatshirts that she claims are recognizable as “boy clothes”. And she wears them over and over. And over. I’m just waiting for the day this shirt, her favorite red one with the characters on it, becomes too tattered to wear …. It’s going to hit the fan then, let me tell you.
I'm so tired of seeing this shirt I could scream. I’m expecting to open the mail any day now and find an anonymous donor has given us a gift card to Goodwill, because people must assume we are poor as dirt since the girl wears the same three shirts and blue jeans over and over. Never mind the closet FULL of cute clothes with matching tights and hats and jumpers, just waiting to be worn. Also, take note of the Power-Ranger watch that never leaves her wrist. And don’t even get me started on the boots!
If it’s not these boots, it’s her hiking boots. Every single day. The closest she will get to “girl-y” is wearing Brayden’s hand-me-down PINK cowboy boots …. but only when all three of her favorite sweatshirts are dirty and she has to --Heaven forbid!-- wear her long sleeve thermal tee with the pink flowers on it that her Aunt Kelly gave her for Christmas. (Aunt Kelly, what were you thinking??? Pink flowers???)
Then tonight, I saw her and Kellen playing with the action hero (don’t you dare call it a doll!) that she picked from the treasure chest at the cancer clinic the last time she had a spinal tap. Every time she gets to pick a toy, she either picks an action figure, or Matchbox car …. Once, it was a really cool 3-ft Hulk puzzle. So I asked her to pose for the following pictures … and as you can see, the thumbs up and thumbs down pretty much sums up her feelings.
So there you go --- she’s a Barbie girl…… NOT!
OK, maybe it's not a serious problem, but hopefully those of you with tomboys out there can feel a little of my pain. For the rest of you, if you want a journal entry that’s a little more profound this week, I recommend Julianna Banana’s site. Her update today rings true for those of us who work hard to put a positive spin on this leukemia journey. Most days it’s not so bad, but she’s right, some days it is W.O.R.K.
On the cancer front for us, Kendrie had her labs done on Tuesday to see if increasing her 6MP to 125 percent would bring her counts down. They are still not as low as they would like, with an ANC of 2001. But that’s progress and her doctor thinks they will continue to fall in the next few weeks as the chemo accumulates in her system. ANC Goal is between 1000-1500. Other chemo news was the announcement this evening by her 7 year old sister, Brayden; “Hey, you guys can go to bed, I gave Kendrie her chemo tonight.”
WHAAAAAATTTTTTTT?????????
Wish us luck,
Kristie
***************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Having a mom and dad who are such anal control freaks that they wigged out when Brayden gave me the chemo tonight. I mean, duh, it’s not like I’ve been doing it every night for months and months and months. Do they think we can’t figure it out???? Geez. I’m 5. Brayden is 7. Add that together and we’re practically a teen-ager. We’re responsible enough for JOBS, and Drivers Licenses, for Pete’s sake, and they simply aren’t giving us enough credit. We do not NEED adult supervision for something as simple and mundane as home-chemotherapy!
BEST PART ABOUT HAVING CANCER TODAY:
Hey, guess what! I was “nominated” to be an Honored Hero for one of the teams taking part in a Leukemia & Lymphoma Society endurance event … the Grand Canyon Hike in May of 2005. (Wow, mom's exhausted just **thinking** about it!) My mom made a new friend this weekend named Ms. Shelley who has taken part in these LLS fundraisers each year. When Ms. Shelley found out that I have leukemia, she asked my mom for permission to give my name as an honored hero for her team …. How cool is that?
OK, I need to discuss with you guys a serious problem I am having. Could someone please tell me WHEN the second X chromosome that Kendrie has is going to kick in? Puberty? College? EVER???? I’m still waiting for the adorable little girl who wants to play dress up in fairy princess costumes, wear her mommy’s make up and jewelry, and play house with her Barbies for hours. Instead, we’ve got an adorable little girl who hates to wear anything pink, prefers denim to tu-tu-s, and chooses soccer and baseball over dolls any day.
Now, I know you must be thinking, “And just why is that a problem?” Yeah, ok, I have no problems with tomboys, I’ll admit that. But, I’ll tell you why! Because our first child was a girly-girl, so all of Kendrie’s hand-me-downs are girl-ish. Or at least relatively girl-ish. She owns exactly three long-sleeve t-shirts/sweatshirts that she claims are recognizable as “boy clothes”. And she wears them over and over. And over. I’m just waiting for the day this shirt, her favorite red one with the characters on it, becomes too tattered to wear …. It’s going to hit the fan then, let me tell you.
I'm so tired of seeing this shirt I could scream. I’m expecting to open the mail any day now and find an anonymous donor has given us a gift card to Goodwill, because people must assume we are poor as dirt since the girl wears the same three shirts and blue jeans over and over. Never mind the closet FULL of cute clothes with matching tights and hats and jumpers, just waiting to be worn. Also, take note of the Power-Ranger watch that never leaves her wrist. And don’t even get me started on the boots!
If it’s not these boots, it’s her hiking boots. Every single day. The closest she will get to “girl-y” is wearing Brayden’s hand-me-down PINK cowboy boots …. but only when all three of her favorite sweatshirts are dirty and she has to --Heaven forbid!-- wear her long sleeve thermal tee with the pink flowers on it that her Aunt Kelly gave her for Christmas. (Aunt Kelly, what were you thinking??? Pink flowers???)
Then tonight, I saw her and Kellen playing with the action hero (don’t you dare call it a doll!) that she picked from the treasure chest at the cancer clinic the last time she had a spinal tap. Every time she gets to pick a toy, she either picks an action figure, or Matchbox car …. Once, it was a really cool 3-ft Hulk puzzle. So I asked her to pose for the following pictures … and as you can see, the thumbs up and thumbs down pretty much sums up her feelings.
So there you go --- she’s a Barbie girl…… NOT!
OK, maybe it's not a serious problem, but hopefully those of you with tomboys out there can feel a little of my pain. For the rest of you, if you want a journal entry that’s a little more profound this week, I recommend Julianna Banana’s site. Her update today rings true for those of us who work hard to put a positive spin on this leukemia journey. Most days it’s not so bad, but she’s right, some days it is W.O.R.K.
On the cancer front for us, Kendrie had her labs done on Tuesday to see if increasing her 6MP to 125 percent would bring her counts down. They are still not as low as they would like, with an ANC of 2001. But that’s progress and her doctor thinks they will continue to fall in the next few weeks as the chemo accumulates in her system. ANC Goal is between 1000-1500. Other chemo news was the announcement this evening by her 7 year old sister, Brayden; “Hey, you guys can go to bed, I gave Kendrie her chemo tonight.”
WHAAAAAATTTTTTTT?????????
Wish us luck,
Kristie
***************************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Having a mom and dad who are such anal control freaks that they wigged out when Brayden gave me the chemo tonight. I mean, duh, it’s not like I’ve been doing it every night for months and months and months. Do they think we can’t figure it out???? Geez. I’m 5. Brayden is 7. Add that together and we’re practically a teen-ager. We’re responsible enough for JOBS, and Drivers Licenses, for Pete’s sake, and they simply aren’t giving us enough credit. We do not NEED adult supervision for something as simple and mundane as home-chemotherapy!
BEST PART ABOUT HAVING CANCER TODAY:
Hey, guess what! I was “nominated” to be an Honored Hero for one of the teams taking part in a Leukemia & Lymphoma Society endurance event … the Grand Canyon Hike in May of 2005. (Wow, mom's exhausted just **thinking** about it!) My mom made a new friend this weekend named Ms. Shelley who has taken part in these LLS fundraisers each year. When Ms. Shelley found out that I have leukemia, she asked my mom for permission to give my name as an honored hero for her team …. How cool is that?
Monday, February 07, 2005
Chemo Takes A Dive …. And other Rhyming Words
(311 Days to Go)
So, up at the top of this web page is the personal motto we blatantly stole from someone else and adopted as our own: Chemo Takes A Dive in 2005! My comment afterwards, “unless someone can come up with a catchier phrase than that” actually brought forth one suggestion, from Madie’s mom, who is using this phrase for Madie (also finishing her chemotherapy treatment this year) “Holy Moly, Sakes Alive, No More Chemo in 2005!” which I have to admit, is pretty catchy. Any chance I get to say “Holy Moly” works for me.
Then, I got this great e-mail from my girlfriend Jadine the other night about our motto. Now, Jadine is one of the Pflugerville Greats roaming around CaringBridge, and although her town might have adopted Julianna Banana as their official Canadian sister-citizen, I TOTALLY claim Jadine because I knew her first! Plus, her personality is just as warped as mine, and she stays up just as late as I do, both of these things evidenced by the extremely disturbed e-mails we send one another at 2 am.
Jadine sent me an e-mail about how she’s been trying and trying to come up with a catchier phrase and although she bows down and accepts the fact that my wit is superior to her own, she wanted to offer a few suggestions. (well, ok, that bowing and accepting part wasn’t really in there, but you know what I mean.) So I gave Jadine’s suggestions to Kendrie …. this **is** her site, after all. After perusing them for a day or two, Kendrie returned to me a poem that she has written based on Jadine’s ideas. I thought I would share that with all of you today.
POEM WRITTEN BY KENDRIE, WITH THE HELP OF MY MOMMY’S FRIEND JADINE:
When I was One, I was just begun,
And when I was Two, I was still pretty new.
When I was Three, I was hardly me,
And when I turned Four, I got acute lymphoblastic leukemia.
Wow, that really sucked.
But now I am Five and I’m MORE than alive!
I thrive and survive and I like to hand-jive.
Some day when I’m older I might learn to drive,
And maybe I’ll even attempt to sky-dive.
At the Cliffs of Mexico, I will arrive,
To amaze and impress with my aerial swan-dive.
Computer problems? I can fix that hard drive.
Want a salad for lunch? Here, have some endive.
Tennis, anyone? I have a great back-hand drive.
Planning a surprise party? I can connive.
I’m playing t-ball this year and hope for a line drive.
Hey, want some honey? I’ll go rob a bee-hive.
My dad says I’m NEVER allowed to have a sex drive. (Whatever that is.)
Whew! I’m getting tired! Perhaps I should take five.
But the poem’s not over, let me revive,
To enjoy my great life, I will really strive.
Oh no, this cancer beast, cannot deprive,
The joy and happiness I am determined to derive.
So for now the big question that I must contrive,
Is whether to play the Bee Gees “Staying Alive”
Or Gloria Gaynor’s “I Will Survive”
Naaaawwwwww, I think I’ll stick to my favorite, the awesome -- “Hand Jive”!
Most important of all, as long as I thrive,
Is that Chemo Takes a Dive in 2005!
--by Kendrie (no autographs, please)
So, up at the top of this web page is the personal motto we blatantly stole from someone else and adopted as our own: Chemo Takes A Dive in 2005! My comment afterwards, “unless someone can come up with a catchier phrase than that” actually brought forth one suggestion, from Madie’s mom, who is using this phrase for Madie (also finishing her chemotherapy treatment this year) “Holy Moly, Sakes Alive, No More Chemo in 2005!” which I have to admit, is pretty catchy. Any chance I get to say “Holy Moly” works for me.
Then, I got this great e-mail from my girlfriend Jadine the other night about our motto. Now, Jadine is one of the Pflugerville Greats roaming around CaringBridge, and although her town might have adopted Julianna Banana as their official Canadian sister-citizen, I TOTALLY claim Jadine because I knew her first! Plus, her personality is just as warped as mine, and she stays up just as late as I do, both of these things evidenced by the extremely disturbed e-mails we send one another at 2 am.
Jadine sent me an e-mail about how she’s been trying and trying to come up with a catchier phrase and although she bows down and accepts the fact that my wit is superior to her own, she wanted to offer a few suggestions. (well, ok, that bowing and accepting part wasn’t really in there, but you know what I mean.) So I gave Jadine’s suggestions to Kendrie …. this **is** her site, after all. After perusing them for a day or two, Kendrie returned to me a poem that she has written based on Jadine’s ideas. I thought I would share that with all of you today.
POEM WRITTEN BY KENDRIE, WITH THE HELP OF MY MOMMY’S FRIEND JADINE:
When I was One, I was just begun,
And when I was Two, I was still pretty new.
When I was Three, I was hardly me,
And when I turned Four, I got acute lymphoblastic leukemia.
Wow, that really sucked.
But now I am Five and I’m MORE than alive!
I thrive and survive and I like to hand-jive.
Some day when I’m older I might learn to drive,
And maybe I’ll even attempt to sky-dive.
At the Cliffs of Mexico, I will arrive,
To amaze and impress with my aerial swan-dive.
Computer problems? I can fix that hard drive.
Want a salad for lunch? Here, have some endive.
Tennis, anyone? I have a great back-hand drive.
Planning a surprise party? I can connive.
I’m playing t-ball this year and hope for a line drive.
Hey, want some honey? I’ll go rob a bee-hive.
My dad says I’m NEVER allowed to have a sex drive. (Whatever that is.)
Whew! I’m getting tired! Perhaps I should take five.
But the poem’s not over, let me revive,
To enjoy my great life, I will really strive.
Oh no, this cancer beast, cannot deprive,
The joy and happiness I am determined to derive.
So for now the big question that I must contrive,
Is whether to play the Bee Gees “Staying Alive”
Or Gloria Gaynor’s “I Will Survive”
Naaaawwwwww, I think I’ll stick to my favorite, the awesome -- “Hand Jive”!
Most important of all, as long as I thrive,
Is that Chemo Takes a Dive in 2005!
--by Kendrie (no autographs, please)
Wednesday, February 02, 2005
“WHAT’S GOING ON WITH US”
and what’s *NOT* going on with us
316 Days to Go
So, not much has been going on with us since Kendrie’s doctor’s visit last week. I don’t think I mentioned in her journal that once again, for the 5th month (out of six) since we started long-term maintenance, her counts were higher than they are supposed to be. After the first three months of high counts, they increased one of her medications. Counts went down for one month …. Then right back up for the last two months. So now they’ve increased another of her medications. What a little over-achiever she is. She’s on 125 percent of chemo for her height and weight. Our online group has a new term for kids like Kendrie: they’re “Downeying” … as in, they can process pharmaceuticals faster than Robert Downey Jr. We have to take her in to the base lab for a local blood draw next week to see if the increase is having the desired result n her Absolute Neutrophil Count. So far, all I can tell it is accomplishing is upping the “sibling argumentative” quota around here. (sigh) We can’t even blame steroids anymore, she finished those on Sunday. And the other two kids aren’t on them. Although the dog *is* on them …. does that count???
Not for one single solitary moment have I forgotten, or taken for granted, how well Kendrie has done with her treatment. She still has this lingering cough, so we've had to add yet another medication to her litany of night-time drug cornucopia and oh, yeah, there’s the whole cancer thing, but compared to many of our Caringbridge friends, our life is cake. So to put it in perspective, here is what is NOT going on with us lately:
We are NOT having surgery on Valentines Day to remove our sacrum and any residual germ cell tumor like our sweet Atlanta friend Mary Grace. We ARE praying for the surgeons to have brilliance and clarity that day.
We are NOT thousands of miles from home in NYC, undergoing surgery and chemo for neuroblastoma, anxiously awaiting the day we can travel home, like Kylie. We ARE praying for healing and safe travels for Kylie and her family.
We are NOT anxiously awaiting scan results to find out if the spots that showed up on our lungs during our routine scan last week are indeed new neuroblastoma spots… which would be devastating, like Chandler. We ARE praying for good news from today’s scans ….so many people are praying.
We are NOT in the hospital with relapsed ALL, having our bone marrow transplant TONIGHT, like Meguire. We ARE praying for Meguire to do well during transplant, and for this to be the beginning of a new and healthy life for him. Praying also for his family during this stressful time, as they are separated, in a hospital far from home, and will be for months.
We are NOT limping around town in our new bright orange cast, suffering from a leg fracture after our chemo, radiation and two stem-cell transplants, like Camp Jack. We ARE thrilled to know it’s “just” a broken leg!! When you are a cancer parent and fearing the symptoms indicate a relapse, the news that it’s nothing “more” than a fracture is joyous indeed!
We are NOT home with our family, suffering from relapsed Ewings Sarcoma, facing the reality that time is short, precious and limited, like Stephanie. We ARE praying fervently that Stephanie continues to feel well and enjoys her time with the family who loves her so much.
We are NOT hours from home, in a hospital PICU, feeling depressed and sad, only a few days after experiencing an unexpected “brain bleed” that was so severe it took us off the waiting list for the liver transplant we desperately need, like our online friend Haley. Haley and Cheryl, we ARE praying for Haley’s continued recovery and want you to know we will do whatever we can to help.
We are NOT in the hospital with relapsed ALL, just days out from the transplant that will hopefully save our life, like Taylor. Shawnee, we ARE searching for more (cute!) pediatric surgical masks for Taylor and will keep your entire family in our thoughts and prayers.
We are NOT still reverberating from the news that our ALL came back almost a year after we finished treatment, and are now facing the beginnings of our relapse protocol, like Matthew. We ARE hoping your inpatient chemo trip goes well this week, Matthew, and HUGE kudos to so many of your friends for joining you in the head-shaving Buzz-Off! Great pictures, by the way!
We are NOT one of the two families I know who not only have one child who has relapsed in their ALL protocol, but has another sibling also fighting an ALL battle. People without a sick child say to me, “I just don’t know how you do it” and I get annoyed. But I look at Kevin and Brian’s mom Lisa, and I look at Ashley and Ryan’s mom Robin, and think to myself, “I am so amazed and impressed with how gracefully and tenaciously they handle all this ………. and I just don’t know how they do it.”
And lastly, we are not the parents of Marcus or Carter or Hayley, who I can only assume are struggling with finding their peace here on earth while their beautiful children are waiting for them in Heaven. Or Garrett’s parents, who just today had to pick out his final resting place and make funeral arrangements. We ARE praying for each of these families and can only hope their burdens are lifted by knowing how many lives were touched by their children, and how many care so much for them.
So, if you’re one of the wonderful people who come to our site on a regular basis and check in, and take the time (much-appreciated, by the way!) to sign our guestbook, I want to say thank you. If you only have time to sign one guestbook today, please skip ours and sign one of the sites I have spot-lighted above. We love the messages, too, but I think some of these families need the support a little more than we do right now.
Thanks,
Kristie
**************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Well, geez, did you read that list above and see how many innocent kids are struggling with this cancer monster? I mean, it’s even more unfair than when Kellen grabbed the last Capri Sun out of the fridge and drank it down like a greedy loser-head before I had a chance to get it!
BEST PART ABOUT HAVING CANCER TODAY:
The fan-tab-u-lous care package my friend Haley sent me (and my stinky brother and sister ... yes, Mom made me share!) in the mail a few days ago ….. but when my mom went to the site to thank her (Haley is waiting for her own liver transplant!) she got some bad news. So now even my best part is tainted a little.
316 Days to Go
So, not much has been going on with us since Kendrie’s doctor’s visit last week. I don’t think I mentioned in her journal that once again, for the 5th month (out of six) since we started long-term maintenance, her counts were higher than they are supposed to be. After the first three months of high counts, they increased one of her medications. Counts went down for one month …. Then right back up for the last two months. So now they’ve increased another of her medications. What a little over-achiever she is. She’s on 125 percent of chemo for her height and weight. Our online group has a new term for kids like Kendrie: they’re “Downeying” … as in, they can process pharmaceuticals faster than Robert Downey Jr. We have to take her in to the base lab for a local blood draw next week to see if the increase is having the desired result n her Absolute Neutrophil Count. So far, all I can tell it is accomplishing is upping the “sibling argumentative” quota around here. (sigh) We can’t even blame steroids anymore, she finished those on Sunday. And the other two kids aren’t on them. Although the dog *is* on them …. does that count???
Not for one single solitary moment have I forgotten, or taken for granted, how well Kendrie has done with her treatment. She still has this lingering cough, so we've had to add yet another medication to her litany of night-time drug cornucopia and oh, yeah, there’s the whole cancer thing, but compared to many of our Caringbridge friends, our life is cake. So to put it in perspective, here is what is NOT going on with us lately:
We are NOT having surgery on Valentines Day to remove our sacrum and any residual germ cell tumor like our sweet Atlanta friend Mary Grace. We ARE praying for the surgeons to have brilliance and clarity that day.
We are NOT thousands of miles from home in NYC, undergoing surgery and chemo for neuroblastoma, anxiously awaiting the day we can travel home, like Kylie. We ARE praying for healing and safe travels for Kylie and her family.
We are NOT anxiously awaiting scan results to find out if the spots that showed up on our lungs during our routine scan last week are indeed new neuroblastoma spots… which would be devastating, like Chandler. We ARE praying for good news from today’s scans ….so many people are praying.
We are NOT in the hospital with relapsed ALL, having our bone marrow transplant TONIGHT, like Meguire. We ARE praying for Meguire to do well during transplant, and for this to be the beginning of a new and healthy life for him. Praying also for his family during this stressful time, as they are separated, in a hospital far from home, and will be for months.
We are NOT limping around town in our new bright orange cast, suffering from a leg fracture after our chemo, radiation and two stem-cell transplants, like Camp Jack. We ARE thrilled to know it’s “just” a broken leg!! When you are a cancer parent and fearing the symptoms indicate a relapse, the news that it’s nothing “more” than a fracture is joyous indeed!
We are NOT home with our family, suffering from relapsed Ewings Sarcoma, facing the reality that time is short, precious and limited, like Stephanie. We ARE praying fervently that Stephanie continues to feel well and enjoys her time with the family who loves her so much.
We are NOT hours from home, in a hospital PICU, feeling depressed and sad, only a few days after experiencing an unexpected “brain bleed” that was so severe it took us off the waiting list for the liver transplant we desperately need, like our online friend Haley. Haley and Cheryl, we ARE praying for Haley’s continued recovery and want you to know we will do whatever we can to help.
We are NOT in the hospital with relapsed ALL, just days out from the transplant that will hopefully save our life, like Taylor. Shawnee, we ARE searching for more (cute!) pediatric surgical masks for Taylor and will keep your entire family in our thoughts and prayers.
We are NOT still reverberating from the news that our ALL came back almost a year after we finished treatment, and are now facing the beginnings of our relapse protocol, like Matthew. We ARE hoping your inpatient chemo trip goes well this week, Matthew, and HUGE kudos to so many of your friends for joining you in the head-shaving Buzz-Off! Great pictures, by the way!
We are NOT one of the two families I know who not only have one child who has relapsed in their ALL protocol, but has another sibling also fighting an ALL battle. People without a sick child say to me, “I just don’t know how you do it” and I get annoyed. But I look at Kevin and Brian’s mom Lisa, and I look at Ashley and Ryan’s mom Robin, and think to myself, “I am so amazed and impressed with how gracefully and tenaciously they handle all this ………. and I just don’t know how they do it.”
And lastly, we are not the parents of Marcus or Carter or Hayley, who I can only assume are struggling with finding their peace here on earth while their beautiful children are waiting for them in Heaven. Or Garrett’s parents, who just today had to pick out his final resting place and make funeral arrangements. We ARE praying for each of these families and can only hope their burdens are lifted by knowing how many lives were touched by their children, and how many care so much for them.
So, if you’re one of the wonderful people who come to our site on a regular basis and check in, and take the time (much-appreciated, by the way!) to sign our guestbook, I want to say thank you. If you only have time to sign one guestbook today, please skip ours and sign one of the sites I have spot-lighted above. We love the messages, too, but I think some of these families need the support a little more than we do right now.
Thanks,
Kristie
**************************************
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY:
Well, geez, did you read that list above and see how many innocent kids are struggling with this cancer monster? I mean, it’s even more unfair than when Kellen grabbed the last Capri Sun out of the fridge and drank it down like a greedy loser-head before I had a chance to get it!
BEST PART ABOUT HAVING CANCER TODAY:
The fan-tab-u-lous care package my friend Haley sent me (and my stinky brother and sister ... yes, Mom made me share!) in the mail a few days ago ….. but when my mom went to the site to thank her (Haley is waiting for her own liver transplant!) she got some bad news. So now even my best part is tainted a little.
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