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Avalon's Army of Angels
| July 26, 2008 Crap Sandwich |
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Subject: Crap Sandwich
I belong to an online List-serv for families of children with ALL. I didn't find the list until a
month or so after Avalon had gone off treatment. While I wish I had known about them
sooner, I have certainly learned there is nothing to be gained by "retrospective wanting". I
found ALL-Kids late in the game, but I've thanked the Heavens for them every day since.
As with the local charity, Kids N Kamp, belonging to ALL-Kids is a chance to "chat" with
people who understand what you're feeling. Even better than KNK, ALL-Kids moms know
exactly where I am. Some cancers only have 3-6 month regimens. All cancers use different
chemos, some never see the "joy" of high dose steroides. When you share with people going
through the exact same treatment, there are so many things you don't have to explain. For
example, sometimes I have a hard time listening to moms complain about a 6 month protocol,
when ALL patients endure 26 months of treatment for girls, 38 months for boys. I mean
honestly, one of our biggest issues is desensitization. You have lots of help for the first 6
months, its the years that follow that its easy for people to become numb to the reality of
chemo. The short-protocol people can't understand that. To my ALL-moms, its a reality we all
share.
Anyway, ALL-Kids has been a wealth of information, an endless supply of support, and an
absolute laugh riot, lots of the time. I won't bore you with all of the details, but it would seem
that hoosiers (folks from Indiana for the non-midwesterners) have a delicacy that can rival the
Ohio Buckeye. (peanutbutter ball coated in chocolate) The hoosier treat is cream
cheese/oreo cookie balls coated in white chocolate. We spent days one time, figuring out
how a mom locked in hospital with a feverish cancer kid, could work that out. Tiny packets of
cream cheese from the cafeteria, Oreos and chocolate from a vending machine, a warm
heinie sitting on the chocolate bar... Yes, the ALL-Kids List can help with medical questions,
but often its the other stuff that keeps us sane.
Everyone on List follows each other's children through their Caring Bridge or other websites.
Its a way to get to know the people we chat with very personally. A few years ago, a mom
from the list posted something on her child's site, that has become part of our culture and
language. The post was put up at Thanksgiving time, and was meant to try to describe this
medical world to outsiders. The analogy is so perfect, its become legendary to us. I've asked
the author's permission to share it with you. With the new surgery looming large on
Wednesday, I think the time is right.
I belong to an online List-serv for families of children with ALL. I didn't find the list until a
month or so after Avalon had gone off treatment. While I wish I had known about them
sooner, I have certainly learned there is nothing to be gained by "retrospective wanting". I
found ALL-Kids late in the game, but I've thanked the Heavens for them every day since.
As with the local charity, Kids N Kamp, belonging to ALL-Kids is a chance to "chat" with
people who understand what you're feeling. Even better than KNK, ALL-Kids moms know
exactly where I am. Some cancers only have 3-6 month regimens. All cancers use different
chemos, some never see the "joy" of high dose steroides. When you share with people going
through the exact same treatment, there are so many things you don't have to explain. For
example, sometimes I have a hard time listening to moms complain about a 6 month protocol,
when ALL patients endure 26 months of treatment for girls, 38 months for boys. I mean
honestly, one of our biggest issues is desensitization. You have lots of help for the first 6
months, its the years that follow that its easy for people to become numb to the reality of
chemo. The short-protocol people can't understand that. To my ALL-moms, its a reality we all
share.
Anyway, ALL-Kids has been a wealth of information, an endless supply of support, and an
absolute laugh riot, lots of the time. I won't bore you with all of the details, but it would seem
that hoosiers (folks from Indiana for the non-midwesterners) have a delicacy that can rival the
Ohio Buckeye. (peanutbutter ball coated in chocolate) The hoosier treat is cream
cheese/oreo cookie balls coated in white chocolate. We spent days one time, figuring out
how a mom locked in hospital with a feverish cancer kid, could work that out. Tiny packets of
cream cheese from the cafeteria, Oreos and chocolate from a vending machine, a warm
heinie sitting on the chocolate bar... Yes, the ALL-Kids List can help with medical questions,
but often its the other stuff that keeps us sane.
Everyone on List follows each other's children through their Caring Bridge or other websites.
Its a way to get to know the people we chat with very personally. A few years ago, a mom
from the list posted something on her child's site, that has become part of our culture and
language. The post was put up at Thanksgiving time, and was meant to try to describe this
medical world to outsiders. The analogy is so perfect, its become legendary to us. I've asked
the author's permission to share it with you. With the new surgery looming large on
Wednesday, I think the time is right.
| CRAP SANDWICH “Crap Sandwich” was written Kristie, whose daughter Kendrie won her battle with ALL, and is happy and healthy now. www.caringbridge.org/ga/kendrie -------------------------------------------------- Imagine every year for Thanksgiving that you and your family go to a wonderful all- you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes, “thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this: You: “Excuse me, I didn’t order this crap sandwich.” Waitress: “House special. You got it without asking.” You: “But I don’t want a crap sandwich. I want good health and happiness for everyone.” Waitress: “Well, you got a crap sandwich.” You (getting upset) “Well take it back and give me what I asked for instead!” Waitress points to a sign that says “Absolutely NO substitutions.” You say adamantly: “There is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to.” And the waitress replies “Hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!” And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”. |
Yeah, I'm starting to be convinced that Avalon has been invited to the All-U-Can-Eat Crap
Buffet. But you know what, there will always be a Dagwood crap sandwich, bigger than ours
at the table next to us. So, thank you Crap Deli owner, for not serving us that one.
And thank you, Kristie, for writing something that reminds me to put it all into perspective.
May all of you avoid the Crap Deli as much as you can!!
Buffet. But you know what, there will always be a Dagwood crap sandwich, bigger than ours
at the table next to us. So, thank you Crap Deli owner, for not serving us that one.
And thank you, Kristie, for writing something that reminds me to put it all into perspective.
May all of you avoid the Crap Deli as much as you can!!