Hi Everyone, Just wanted to introduce myself:)

My name is April and I am 28, I was diagnosed (at 26) with the rare type of cancer that Kris Carr has. Ehe for short. I just was wondering if anyone else out there also has this same type of rare cancer. I have managed to register on acouple of sites but I have only spoken (and am now pen pals with) one other person with this disease. Its so rare its quite hard to find anyone, and my feeling is knowledge is the key. If we all came together and shared our experiences maybe we would be able to open the field for what doctors dont know. I also wanted to just give everyone that has cancer a big hug- If you ever need to talk I am here.

Tags: ehe, epithliod, hemangioendothilioma

▶ Reply to This

Replies to This Discussion

Permalink Reply by Whole_Body_Healer on April 24, 2008 at 11:02pm: Welcome. Did you check out the EHE group in Groovy Groups?; ▶ Reply to This

Permalink Reply by April on April 25, 2008 at 11:39am: Hi, Thank you. I will check that out asap:); ▶ Reply to This

Permalink Reply by treeluv on April 25, 2008 at 10:20am: welcome april! this is YOUR month so i hope you are able to enjoy it! i am so sorry to hear about your diagnosis. this is such a great place to land. you will find others here that are going thru similar experiences. you will be able to help and be helped. i am so glad you are here!

peace,

kelly; ▶ Reply to This

Permalink Reply by April on April 25, 2008 at 11:41am: Dear Kelly,
Thank you so much. I look forward to meeting new people and cant help but know that if we all come together it will only make us stronger. Lol, my month- I wanted to change my name forever and when I turned 18 I guess I just forgot about it:)
Take Care,
April; ▶ Reply to This

Permalink Reply by Chris in Wyoming on April 25, 2008 at 10:32am: You have come to the right village...welcome!
So much information, so much support, so much love and inspiration. You can get a eHug, you can pitch a fit, you can cry, you can laugh and you can heal...

Hugs,
Chris in Wyoming; ▶ Reply to This

Permalink Reply by April on April 25, 2008 at 11:44am: I gotta say I dont know what took me so long to look at this website. I am so glad I am here and look foward to meeting everyone. My emotions are most defintly running wild, but I guess thats normal. I know I just have to keep my head up because I know I have two little ones that need me to be around to watch them grow. Thank you for the hug, sending one back:) Who knew hugs could meen so much:); ▶ Reply to This

Permalink Reply by Guy on April 25, 2008 at 10:42am: hi april,
my name is guy. my 14yo son was found to have EHE over the past thanksgiving holiday. fortunately, there is a website devoted to this rare disease: www.heardsupport.org. it is organized and run by a woman living in australia who's son has EHE. one of the advantages of the site is the registry that you can gain access to after joining. it has the stories of many, many cases, so you can get an idea of the range of things one can encounter in this very unpredictable disease. but most important, you can actually contact other people with the condition who are willing to share their experiences and help out. i've also done a lot of reading and can answer some questions you might have.
regards,
guy; ▶ Reply to This

Permalink Reply by April on April 25, 2008 at 11:50am: I am so sorry to hear that. This disease does not seem to mind affecting the lives of young people. I have gone on that website and registered. I must say I think I cried for 5 hours when I got the list. One good thing is I really started getting onto my doctor about what he is not doing. I am not on any medications, no treatments. The only thing they do with me is when the tumors appear on my liver I have surgery to remove them. I cant see how that is going to rid me of this "blood vessel" cancer. I really would love to chat. What treatments have they been doing for your son? Did it appear in his liver, lungs or bones? I just recently made my doctor do a scan of my lungs and bones, he said my bones look okay but there are two small "nodules" on my lungs. He said not to worry they were very small. But of course I worry about eveything. I always feel as though there has to be some sort of treatment or somthing they can do to make this better. I am completly frustrated. How did they discover your son had it?
Cant wait to talk,
April; ▶ Reply to This

Permalink Reply by Guy on April 25, 2008 at 2:28pm: isaac had a very similar story to yours.
he felt like crap all summer and kept complaining of a 'bump' on his abdomen. he had a positive 'mono' test so we chalked it up to that. then, after an entire fall of feeling crappy, he woke up on thanksgiving day with severe pain in his side. the ct scan in the ER showed monster big tumors. the expert we saw told us it was metastatic hepatocellular Ca....an incurable, and rapidly fatal illness. after a weekend in hell, we found our first miracle: the biopsy came back EHE, a rare bird, as you know, with a better, tho unpredictable prognosis. he has EHE in his liver, lungs and possibly bone.
one thing i neglected to mention in speaking so highly of the guys at dana farber is the wonderful care we're getting at university of chicago. they rock, too!!! they are equally righteous. and have been just amazing. in contrast, we won't return to the hosptial where the liver expert told us, before the path report was back, that our precious son had only months to live. jerks. maybe i'll send them photos of him playing little league or standing next to me (he's grown an inch since then).
g; ▶ Reply to This

Permalink Reply by Crazy Sexy Life on April 25, 2008 at 10:43am: Hi April!
Obviously a rare fellow EHE'er has a special place in our hearts! Yes, check out the EHE group, although we confess to being a bit too busy lately to nurture it. Maybe you can give it a shot of love...

Have you checked out the website
http://www.heardsupport.org/index.html

Also, we've accumulated a list of about a dozen and a half EHE folks who have contacted us since the film and book came out last year. We'll be emailing everyone individually to see if and how you'd all like to stay in contact with each other.; ▶ Reply to This

Permalink Reply by April on April 25, 2008 at 11:55am: Lol, I am glad I found the place I need to be. Yes, I did check out that website and registered. It was very depressing but also very informative. I am glad that people are coming out that have this type of cancer. This disease seems like such a hidden mystery. I try to post myself any where I can- so people can contact me. I do get emails but they are far and few between. I want to be able to be here as a support and also be supported. I have my times where I feel like I am a rock and nothing can hurt me but I also have my times where I feel like all doom has consumed me. Wow, I am so glad I came on here:); ▶ Reply to This

Permalink Reply by Callie on April 25, 2008 at 11:01am: Welcome.. Kris is the best.. and she has a group for ehe.. dive right in. We are so happy you are here April. Tons of love and get ready for the ride of your life. This community will shake you and teach you and love you and have you dancing the happy dance all the time. Hugs callie; ▶ Reply to This