|The Bumpy Bone Club
Questions and Answers
You can answer just one question, or as many as you'd like. You can post your answers in the Guestbook below, or send your answers (and ideas for new questions),to firstname.lastname@example.org
|Question #1: Have you ever had an operation? Tell us what it was like.
Conor (email@example.com): Scary.
Nicholas (firstname.lastname@example.org):Yes, I have had 5 operations. I don't like waking up after the anesthesia. I am 9 years old.
Nicole (email@example.com): I have had 5 operations since I was 10. Now I'm 13. Not a happy time, but they've all been better than the first one.
Rochelle: I've had two major operations. The first one was in Spokane and I had one removed in my right knee and one from my right armpit. That was December 11, 1996, when I was 11. The second one was in Portland and I had to get an "extra bone," as I call them, cut off from both sides of my left knee. That happened October 20, 1997, when I was 12. I'm supposed to have surgery anytime now on my right knee, my ribs, my shoulder, my wrist, and on my right leg bone.
Jessica (TeaTymeDebnJess@aol.com) : I have had 3 operations; well, 8 if you count the 2 extra ones in 1997! All of them were really scary.
Vincent: I am 10 years old and have had 10 operations. All of my operations were not painful at all.
|Question #2: What sorts of funny things have happened because of your bumpy bones?
This story is from Conor and his mom, Cassie:
Conor was in the hospital getting his cast replaced, and he promised cookies to all the staff for when he came back to have his cast removed. He promised cookies for everyone from the surgery team all the way down to the valet parking staff. So, the day before he had his cast removed, his mom had to spend the day baking cookies and putting them in little baggies so Conor could pass them out. Conor thinks this story is funny because his mom made him carry all the cookies in his lap in the wheelchair (since she had to push him, carry his ten-week-old sister, the diaperbag,Conor's books and toys, and her purse) and
there's Conor, crabbing about schlepping the cookies that he promised to the entire hospital! It was a day to remember!
Nicole: I've had a few funny things happen since my operation. One is that I put Beanie Babies and a Kermit the Frog key chain on my walker. When I went to the doctor to be checked after the operation there was a baby in the waiting room who thought my walker was a toy and just climbed under it and was playing with Kermit. It was really cute.
I have a lot of funny times in physical therapy. Before my operation I had to go to learn how to use crutches or a walker. It hurt too much to use crutches because of the tumors in my arms, but when they gave me the walker to try I loved it! I was dancing around the therapy room with the walker and everyone was laughing. Now I go back to the same place a few times a week and a lot of times it's not funny, but they all try to make it as fun as possible for me. My therapist made up games we play with balloons, where I have to kick the balloon to get my leg working, or stand with my leg on a scale and my arm on mom's shoulder, and hit the balloon, trying to put more and more weight on the leg. One of the therapists and my little sister have contests - they can both put their feet up to their ears - my sister does it while she's sitting - but the therapist can put her foot behind her neck while she's standing on the other foot! We all laugh while they do these crazy things!
Rochelle: Well, my first surgery was in December and I lived in Billings, Montana at the time. It's really icy and cold there in the winter, so the doctors attached these little traction things on the bottoms of my crutches so I wouldn't slip. They made funny noises when I walked. Another fun memory was at the hospital. I used to sneak out with my roommate at 3 a.m. and have wheelchair races in the hallway (of course we got caught real fast!). I remember one time, when I was in 5th grade, my class somehow found out about my upcoming surgery and when I came to school before I left the next morning, they threw me a surprise party. We spent all day eating junk food, watching movies, and all that stuff. Right before the bell rang, I mentioned how bored I would be, so my teacher set a HUGE stack of work in front of me, grinned evilly, and said "Now you won't!". After my surgery I got a package and inside there were get well cards from everybody in my class, plus presents.
Jessica: Well, on my first operation, the guy who put the Gas on said it would taste like gum, and when it was on I tried to yell "It does not!", but no one heard me. That time I had a dream that there were bugs biting me (IV) and there were dancing cats doing the Cha cha cha.
Vincent: One day the day after my surgery a nurse saw my leg and started to call me Mr. McGoo and that was funny.
|Question #3: Have you told your friends and your teachers that you have MHE?|
|Nicholas: The teachers know about my bones, and my friends know that I have them, but they do not know what it is called.
Nicole: All of my teachers know (but sometimes they forget!). Most of my friends and classmates know.
Jake: Yes, I have told my friends because I don't always do everything they do. When they ask, I let them know about my bone tumors and let them feel them. They don't tease me, because they just don't.
Rochelle: I have to tell my teachers about "it" now, mainly because I can't write because of an "extra bone" growing under a nerve in my hand, and, being in high school, I get a lot of homework. Some are really mean and refuse to help make school as painless as possible for me, but others are really nice and write out my notes for me. I also tell my friends, because I trust them and I know they won't make fun of me. We act totally normal about it, though.
Jessica: All my teachers know and the kids from last year (at my old school). Only one girl in my class who had an operation, too, at Sick Kids, Sam, knows.
Vincent: I have told most of my friends that I have MHE.
|Question #4: Has anyone ever teased you?
Conor: Nobody teases me at school.
Nicholas: There are some unkind children who laugh at a very big bone that I have at the top of my arm, but most people are kind.
Nicole: I stopped wearing shorts three years ago because of the bumps on my leg and some kids would say things like "Is it part of your religion that you can't wear shorts?". I haven't been teased in Middle School.
Rochelle: Actually, I get teased a lot. See...High school is all about how you look, and in P.E. I have to wear a t-shirt and shorts. I've been getting a lot of new "extra bones" lately, in fact I have around 100 or more. I wear tall socks to cover up the ones on my ankles, and sag my shorts where they go past my knee and cover the really big one. My elbows look weird, and I can't play sports or anythiing, so in P.E. I sit against the wall or walk. A bunch of bullies in my P.E. class always call me "the little mutant girl" or "the missing link" but I can brush most of that off. And, since I live in a small town, I know that some guy who was around when I had my 6th grade surgery spread a rumor about how I got MHE. That's what really hurts, and I get called names for that. Now I try to stay in the shadows, and I wear baggy clothes whenever I can. Thank Goodness the teachers don't make me do swimming.
Jessica: Yes, last year in Grade 6 a boy called me "Disease girl" whenever he saw me, and this year he called me that once and a girl, my friend, said because he is overweight, "Go join Weight Watchers!"
Vincent: No, no one has ever teased me. All my friends are nice to me.
|Question #5: Do strangers ever ask you about your bumps or scars? If they do, what do you say to them?
Conor: I don't like it when people ask about my scars. Once I was at a store and and someone asked me why I was in a wheelchair. I told her I was fighting an evil space alien and I slipped on a banana peel.
Nicholas: People do ask about my scars, but my Mum tells them. I don't like talking about it much really.
Nicole: I didn't have a scar until now, and nobody asked me about my bumps before. When people see me in the wheelchair, sometimes they ask "What did you do to yourself?", or "Did you break your leg?" I like to say, "I didn't do anything - the doctor did it!", because my nerve was hurt from the operation!
Rochelle: Since I have to wear shorts everyday in P.E., people notice that my arms and legs are a little ...weird. The thing that sticks out most to people is the scars on my knees (I have one on the inside of my right knee, and one on each side of my left knee). People also notice that I wear a wrist brace all the time (because I can't use it) adn ask about that. I tell anybody who asks, because there's really nothing to be ashamed of. One kid, a tenth grader named Terrence, found out and used to yell at anybody who teased me, and was kinda like my protector. When most people find out, they are concerned about me everyday and are always trying to help (even the popular kids).
Jessica: Not really. If they do, my mom answers for me because I don't like to talk about it.
Vincent: I am not sure anyone has ever really asked me about my bumps and scars.