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A Meeting Place for Kids
Whose Loved Ones Have Hepatitis C

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My name is Cody and I'm 10 years old. I'm here to chat about Hepatitis C. My life has been down to ashes since my mom got sick. I'm glad we're going to talk about it here.

My family is really getting effected by my mom being sick. It feels like my family is coming to the end of the world. We're going through what feels like a nuclear explosion. It's really scary that this is happening.

I think all kids fear that they're going to loose their loved one because of Hepatitis C. Sometimes I feel like I'm going to loose my mom and end up alone. I want Kids to know that they are not alone in their fear, and we can talk about it.

It's very scary for a loved one to get sick, especially when they're on Interferon. You know, it's O.K. to get scared and that's what we're here for. I feel like I have to make sure my mom is O.K. all the time. The side effects of the shots sometimes make my mom sick but it's supposed to happen that way. It might not to everybody who takes shots, but it does my mom.

The Interferon shots make her get a little angry and that makes me sad, but it also kinda makes me happy too, because it tells me the Interferon is working. The shots also makes her brain-fart. Mom forgets what she's thinking, to take her pills, mixing up doctors appointments, forgetting my play dates, and to return phone calls.

Me and my mom went to the University of Miami today together. It was good because she let me go with her instead of going to school. I learned that she's getting good care and getting new friends there. I really like her nurse. I also feel better watching my mom take her shots because it makes me comfortable knowing how it works - it's not so scary.

YOU CAN WRITE ME AT MY MOM'S EMAIL ADDRESS!

Please put " CODY " in the letter so my mom knows it's for me.

andi@mindless.com


hi cody my dad has hep c to but i'm living through it and i am to i'm trying to learn everything about this slow working virus and one thing i know that is that this virus can make itself look exactly like the liver cell and i hope your mom get's better because i think no one deserves to die from a deadly virus and i hope you have a good life and bye. oh if you want to be my penpal right to skyman9646.aol.com .


bye
skyler/skyman



From: Pat
To: Cody

Hi Cody ... I'm Pat ... my mom has talked about you ... I like your homepage. She set me up here and left so I could just write by myself. She said we could set up a hompage for my sister and me too.

I'm 17. My Grandma died 33 days ago; she was a very, very special person in our family, and in the world. She's sort of left us with a legacy that we have to honor.

It's hard now. Grandma was the one everyone turned to, and now we can't do that. We have to turn to each other, and remember all the things that Grandma said to us, and taught us. I've been alone for the last 33 days ... I've stayed in touch with my Mom and sister, but i didn't want to talk to anyone else. I went down to Florida to do some surfing and work with the Hatians, then I just flew down to Haiti for a couple of weeks to find some friends I lost track of and see if I could get them back up here.

I couldn't find them. They're gone too. So I came back and am sort of staying with my dad and mom now.

I'm so scared of losing my Mom. Really scared. I can't even talk to any of my old friends anymore, cause I'm afraid I'll just start crying and won't be able to stop. That's what happened in the hospital while we watched Grandma die...everyone hugging, holding hands, when someone broke, someone stepped into the circle to just hug and hold. I don't talk to anyone much anymore. I surf alone, I quit my job, and I just want to stay with my Mom and help her get through everything.

Grandma was so special and my Mom is just like her, she even looks like her. I just want her to get well, to see her ride her horses again, to go to the beach, to do everything she always loved so much before. I love my Mom, I love her so much, she's so beautiful, just like my Grandma.

Pat

I don't know anything else to say. I just miss my Grandma, and I love my Mom so much. It gets hard to talk.


From: Jessica (Cody's Sister)
To: Pat
Subject: Your Grandma and Mom

Pat,


I would love to set a web page up with you. E-mail me when you would like to start. (I took a class and can do my own). My mom will let you set one up on this website I think.

It’s very sad about your grandma. But you should remember all the good times you two had together. That will help you get through the hard times. If you ever have a problem just think about what your grandma would say about it.

Well if you ever need someone to talk to I’ll always have time to listen to you. So e-mail me when you need a friend.

Jessi


From: "The Madisons"
Subject: Hello there Cody!

I found your Web page because I also have a home page on AT&T, and I was looking at "Random Home Pages." I live in Baltimore with my husband and two sons, Greg and Keith. We don't have any loved ones with this illness.

I'm writing to you because I think you have had a really GREAT idea, and I just had to tell you. Having a special place for sharing will help everyone. I'd like to put a link to your page on my own home page, with a little note. That way, if any kids in this situation happen to surf in, they'll have a link to click on. I only get to work on my page on the weekends, so I'll proably do it on Saturday or Sunday.

You or your mom are welcome to visit at http://home.att.net/~gakmadison. My page is not as colorful as yours!

Anyway, all the best to you and your Mom. You sound like a great kid to me.

Anne Madison


From: wild dog
To: Cody
Subject: Dear Cody, hang in there buddy

I have to tell you I happened to your web site thru a link provided by the Madisons. I have told others about your web site not because I have hep or know anybody who does. I read the letters from you and others and they touched my heart so deeply that I too would like to help. If I can be a friend or help in some other way please let me know. There is a lot of pleasure and pain in this world and I belive when we leave this great place we go to a better one. Keep your spirits high other will gain energy from you.

God bless
Greg/wilddog


From: Theodora Stamos
To: Cody
Subject: Hello Cody!!!

My name is Theo and was very sad to hear how you feel about your mom. My son Jonathan which is 11 years old (just one year older than you!!!) got Hep C from a blood transfusion. I feel the same way as you do. Some times it makes me very angry and some times it makes me very sad. Jonathans' virus is peacefully coexisting with him right now and he does not have to take any medication. If that time every comes I do not know what I will do. He is a very angry little boy sometimes because of it though!!! The future scares me as much as it scares you Cody. I hope my little boy will be able to get married and have children and will be able to live a very normal LONG life but truth is I do not know that!!!! I love him very much and I am very scared for him and for myself but you know what sometimes I look at him and I thank God that he gave me Jonathan bercause he is a very special little boy. And when he gets angry I try to love him even more. I understand that he is not angry at me!!! I hope that I can get Jonathan to write to you. He does not like to talk about his Hep C and sometimes he ignores that it even exists.

I hope that we will get to talk soon.

Keep smiling and don't forget when your mom gets angry love her even more because she is not angry AT YOU!!!!

Keep smiling
Theo


From: Cynthia Daniel
To: Cody
Subject: WOW! you're a great kid

Cody,

First thank you for your web page. I've just started my INF therapy... and I have an 9 year old son, who right now doesn't know how serious my illness is, he watches me take my shot and helps me lay down...... as soon as our computer is fixed I'll let him write to you.



From: CASSIE
To: Cody
Subject: having afriend

hi cody


my name is cassie im 18 years old and ,my dad also has hep C we found out about it ,About a year ago . You'r not joking when you say that it seems you won't have no one we'll this is the frist time I've wrote any one.And I really don't know what I'm doing.

SO I GUEESE I"LL LET YOU GO HOPE YOU WRITE BACK

TALK LATTER,

CASSIE


From:Ashley
To: Cody
Subject: me too

this is for Cody am Ashley right back

I know how you feel my mom has hep to she has hep-c. life is hard she cant work like she did before she worked at cool places.


From:Ashley
To: Cody
Subject: cody

hi am Ashley my mom has hep to


From:Reno
To: Cody
Subject: cody

Dear Cody,
My name is Reno, My mom has Hep-C too. I also have it. My mom is on the combo. The combo is like interferon but it works better. I have had Hep-C for a long time, I hope your mom feels better. Please write back to me and we could talk. My e-mail address is keykitten@earthlink. com.

Hepfriend,
Reno


From: ReneeStack
Subject: Re; hi Cody

Hi Cody,
I am 25 years old and I have hep.c. I read your letter and it is very heartbreaking. You must love your mom a lot. Just keep praying for her. She'll be ok. I have a little girl she in 21 months old. She is ok, thank god. I just wanted to tell you, that your mom was blessed to have you by herside.

take care.


From: Kent Brimhall
Subject: support!

Dear Cody,
I'm sorry to hear that your mom has Hepatitis C. I truly hope that the treatments and drugs that she's taking helps. I will keep her in my prayers, as well as the rest of your family.

A friend,

Jonathan Brimhall


From: MULCHGAL60
Subject: THANK GOD FOR LITTLE BOYS WHO GROW UP FAST to always be there for mom

I hope everyone is doing better . I am the mom and i wish i could have done a web page for my son HE IS MY SHINNING STARR!!! I to have hep c and now cirrohisis have since 1991 that we know of. BEEN on and off interfrone the bad stuff, all those drugs to try to control it some how , but nothing has worked excepet all the help my son has given me and my family/ he,is only 12 years old and THANK GOD FOR HIM !!! HE has been thur so much for a12 year old , he knows i am sick. i have ahealthy 2 year old little girl and she loves him to death ! MY sons name is orrin he takes really good care of his little sister Taylor rose I have been single parent for 10 years . Just got married last dec 1.1998 for the first time and my son was there i never been married before we went to las vegas i was glad he was with me anyway the reason i am writting this is let everyone know i am i have this bad bad sickness but on the other hand it has brought me and my son very very close together and we have always been close I just pray I will be here for him when he grautates to college and when he gets married and have his own family and he wants to be a scientest he wannts to study and find a cure for this DAMN killer hepc ! thanks for letting me share !! if you want to w/b please do ,he does not know i am writting this GOD BLESS ALL ask!!!! my name... xoxoxo kids hang in there , it will get better they really dont mean to YELL they sometimes cant help it (I know)

MOM


Subject: Hello Cody
From: "Evanchik" <evanchik@mhtc.net>

Bye Cody it was nice talking to you. Your on-line friend,


Joey


From: Meg Ransom
Subject: Cody's Web site

Thank you Cody for the information on your web site. I am 8 years old and in third grade. THis information really helped me to learn about Hep C. My dad has Hep C and he taked Interferon too. He gets really tired sometimes and angry. My dad stayed in the hospital for seven days. I am really scared that my dad might die. Thanks a lot.

Please write me if you have time and let me know how you are doing at MegRansom@aol.com.


Sincerely,
Megan


To: "cody"
Subject: hey cody!

Hi cody my mom has it so do i my name is billy write me


Subject: Thank you Cody !

Dearest Cody & Mom:

I think the idea of writing to others and keeping the lines of communication open with other kids in your situation is such a wonderful thing to have done. I was so glad to hear that MOM is feeling more like herself after Interfuron. I have said prayers that your mother is being helped by the treatment.

I am going to try and have my kids e-mail you. I am a mom and am Hep C free, though my husband has it. Our kids are healthy, thank God, but their Daddy has been though the mill. We know what you have gone through, the world turning upside down. Our daughter is 16 and our son is 8. Their Daddy was diagnosed in 1993, and had a liver transplant in 1995--guess where?? At University of Miami. You are very right, the doctors are great and you do get to meet people who understand what is happening with your family. The interfuron didn't work on him, pre or post transplant, but he has a genotype that is resistant to the treatment. Unfortunately, the virus came back and re-infected his new liver. He is now at Stage 4 cirrohis and there is nothing more that can be done. No one can tell us how much time he has left, but they have put him on very good pain medication so he can participate the best he can with the kids. He can play with our son on the Sony Playstation when he feels up to it, and can still watch T.V. with our daughter, so they can share their favorite shows. Our kids are so great, helping with meds and everything, but just like you and the other kids that write, they have no one to talk to. No one really understands what they are going through, unless they have been through it themselves.

I do hope I can get them to e-mail you and others, because they need all of the support and understanding they can get right now. Our daughter needs to talk to someone, she can only cry when she talks to me. She tried the school counselor, but she had no clue as to what my daughter was talking about. One of her friends thought that a person had 2 livers, so they could do without the one infected with the virus. Can you imagine that??? A 16 year old not knowing how many parts are in the body???? Another friend of hers insisted there was a vaccine for Hep C, he was positive that he had the vaccine.(Think again, vaccine for Hep B is available and mandatory now for school admittance). My daughter set them both straight.


Thanks for your bravery in helping your mom. I know how hard it is to see your loved one so sick, and to be afraid for the future. I am also so happy to know you and your mom are doing better. Our love to you and your family.

You can e-mail us at Emerhill55@aol.com



Hi cody,I know what you're going through,my mom has hep c too she is on meds and it is really freaky.I hate it when she gets mad after her meds. It is really scary when i see her hep c news letter with articles about the statistics of people that die. I am going to set up a chat ,you can access it by going into delphi forums. It will be called hep c kid chat.

Please log on and talk to me.

From
Jacqueline
:-)
I am 11 yrs old


Subject: cody

Hello this is for you and your mom cody, my whole family is infected by this bad virus. I do understand your fears, I also understand that the love you are giving your mother is helping her more than you can
imagine, just knowing someone is there who loves you makes the treatment that much easier. I am 47, my wife is 39 and my son jacob is 3 yrs old. We are all on this medicine and with out each others love it would be very difficult, my son holds my hand and tells me it will be okay daddy and somehow that works better than anything. Keep your chin up and hug your mom and hold her hand and always tell her you love her. you are being one heck of a big man for your mom.

julius lisa and jacob


Hi Cody, and "mom".......

I think this is a wonderful thing you have going, and I hope you keep it up. My name is Robbie and I to have HCV. I am a mom, but my children are all grown, although, I do have two step daughters 15 and 16. I am also a Support Group Leader for the Texas Liver Coalition. I am sooooooooo proud of you helping your mom spread the word about HCV to the public, because this is a very much needed thing. With such fearless Warriors as yourself, how can we not beat this ugly dragon called HCV!!!!!!! Hang in there kido, your great kid......and all is going to be fine.......

Many Prayers and Hugs, Robbie/Monahans, Tx TLC support group leader


Subject: Hi!! This is for Cody and His Mom

What a neat place to come. My boyfriend of 8 years...might as well say husband was just diagnosed with Hep C about 3 weeks ago. I am scared for him and for me. Tyring to learn all I can. He is tired a lot. He has a biopsy on Tuesday. We will know at that time what steps to take next. I know how you feel Cody. I appreciate your giving us a place to feel understood for a moment.

Thanks,

Stephanie


Subject: For Cody

Hi Cody! You're a very special boy and I love your site. My name is Misty Jessee, I'm 17 years old and have Hepatitis C. My doctor is not sure when I got the disease, but he knows I've had it for a while. My dad first got Hep C in the late 1970's, but then not that much was known about it. My dad did not know then the risks of drinking alcohol, and he develpoed cirrhosis. My dad just passed away on May 1, 2000, and I miss him so much.

There are so many times when I just cry because he's not here to hold me in his arms. After my dad died, my mother donated blood to the Red Cross. She received a letter back saying she had tested positive for Hep C, and my sister and I had to be checked. I was positive and my sister was
negative.

I was just diagnosed, and I cannot start therapy until after my biopsy. I am really scared. I loved reading what you and others have written because it makes me feel that I am not alone. Thank you for all that you have done to help educate others about this disease, and God Bless.

Misty Jessee


Subject: For Cody

Dear Cody,

My Mom got Hepatitis C by doing drugs with some of her friends when she was younger. I know how you feel, when our Moms might die any second of any day. My Mom went to the doctor a long time ago when she just got Hepatitis C and they said she was going to die, and when I heard that I knew things just werent going to be the same. Its a horrid virus and I dont know wwhy God whould ever creat someething like this. I feel so very sorry for you because I know how it feels, its scary, verry scary. I realy hope your Mom gets better.

~Serina


To: Cody
From: Eva - I understand what you mean.

Hi Cody!! My name is Eva, I am 15 years old. My mom has hep c, she got it when I was born. The doctors told her she would live 15 more years, but she took chemo and inferon and she was doing fine until one day her nurse call and said the viris was back. I worry that my mom will not see her grand kids before she dies, and I can't help but blame myself for her being sick. I think a website for hep c is a great idea, my mom told me about it so I could let out my feelings.

Well I have to go now, it is very hard to talk about things like this but if you ever need to talk to someone e-mail me at emg_121984@yahoo.com


Dear CODY

Im glad that your mom is better.

Right now my mom has it but im not very worried because there is a medicine just i know that it will be a while before she getts off of INT

my uncle has it to very badley,
i feel cind of scared.
he has had it for a while he
dident even no it.
im young and im having to go through this
it it a little hard i am 9 turning 10
my uncle may die soon so i am
more worried about him
i think it is great that you have
a web page were people can talk
about hep c,and tell someone there
fellings know that someone is there
to lisen when there loved one is going to
die,when they feel alone.

thankyou,

for letting me know i can talk to someone


Dear Codi and Mom,

I'm a 42 year old single mom with hep c. My son is 12 (7th gr) and my daughter is 10 (5th gr). I started the interferon and ribavarin treatment 11/8/00. We have been going through some pretty tough times lately. The kids are my only salvation right now. I would like a place for my son to go that is kid friendly and for hep c kids, but he is on aol mature teen only and I am not very savvy with internet links yet. Just trying to find out information to help me through this. I found your page (through Tom Chatterton's site) earlier this evening and had my son read your letter and the first few entries and we both cried. My daughter read it and buried it like she does most things these days. She is on kids only aol.

Due to the dated letters, I am now unsure where to send my son for some kindof support. If you are still replying, I would appreciate any web sites or friends you have met on line that I can help my kids get through this too.

Thank you and I hope you are all well. I'm a warrior and I'll be fine, but my kids need help.

Carol



1997 Message from Cody's Mom....

The choice of background, graphics, colors, were all Cody's! He dictated the content of the text directly to me, and not one word was changed, prompted, or edited. We created this site immediatly after "our" visit to the University.

I have since ended Interferon and am back to my "old" self again. Our family, including Codyman, is doing much much better these days. We (Cody & Mom) hope we were able to help you and your family in some small way by sharing this info.

If you know of any children who are in need of having a friend, who share the same concerns, fears, and willingness to share their story(ies), PLEASE...help them find the HepKids page. Cody doesn't always have time to write back, but all the letters get posted and are read by others!


1999 Update from Cody's Mom....

August 27, 1999. As I look back at the day we sat down to create Cody's "HepKids" site - I remember the fear, pain, and frustration in his face and eyes. Intuitively, Cody knew that the only way he could capture my attention was to step into my "Hep-C ALERT" world and become an activist for the "cause" - which to Cody, meant being an activist for MOM. When I was on treatment, I felt that I was letting Cody and his sister Jessi down all the time. But they both gave me all their love - even though I made it hard to give - and that's what I needed to get better.

It's been a little more than two years since our web page building day, and Cody is now a tall and handsome 12 year old boy/man. His eyes and heart are both independent and tender. Not fearful. Not worried.

These days, Cody is my A-1 volunteer - proudly joining me at most of the local hepatitis outreach events we sponsor wearing an ALERT Staff T-Shirt and handing out flyers telling the world about hepatitis C. What adult could refuse to accept a flyer from such a bright eyed boy? LOL! He's got the "Hep Rap" down better than even some adults!

Cody... you're da man.

Love,

Mom


2001 Update from Cody's Mom....

April 28, 2001. Where do I start? My job at Hep-C ALERT has been a full-time/paid position for the last two years. If you've looked at our highlights, you can only guess how little I've been around for my children. Well... they're not really "children" anymore, but teenagers.

Cody turned 14 last month, has grown 6" and his voice is deepening. BUT - he still crawls into bed with me for snuggles and brings me my coffee (decaf) in the morning. Cody is still volunteering at our events, but spends more time with his pals than his folks.

Jessi turned 17 last month, and is one of the best young ladies I've ever known. Now that volunteer hours = high school kudos, she has volunteered over 300 hours of her time to ALERT in the last year. (Not that she didn't volunteer before, but WOW!)

I'm so blessed to have such caring and "together" children and a TOTALLY supportive partner (my ever-patient JON....). It's only through their love, help and tolerance. that I'm able to carry on with this vital work.

Cody (and the entire family) sends love and best wishes to all of the HepKids page readers. We hope you regain your balance in life and start healing very very soon.

Love,

Mom


~This webpage was created on 6/2/97~

~This webpage was last updated on 4/28/01~

To Hep-C ALERT!