Cancer Survivors Network - survivor of childhood cancer - Comments

Long Term Neuroblastoma survivors..

jillebob — Wed, 11 Nov 2009 23:40:42 -0500

I seen your comment on the "childhood cancer" site..for long term surviors..
you need to search for the site Neuroblastom on the cancer.org site. There is a few us here...
http://csn.cancer.org/node/163926
If you also are a facebook person, there is groups on facebook about neuroblastoma survivors. You could check that out also...

i know you posted this

mackenzie_b — Wed, 28 Oct 2009 19:17:34 -0400

i know you posted this comment a few years ago but my daughter has stage 4 neuroblastoma and it is very hard to find long term survivors, if you get this please e mail me nln44266@aol.com

My son is a survvivor

lawslegal — Thu, 22 Oct 2009 14:45:23 -0400

My son is a five year survivor of brain cancer, grade II astrocytoma.

I just published a book called, "Michael's Journey" to try to inspire other families going through similar situations.

You can view more about the book and Michael at www.michaelsjourney.net

Best of Luck to Everyone!

Laura, Micahel's Mom

Congratulations!

heart-2 — Mon, 19 Oct 2009 21:07:22 -0400

Congratulations!

I agree!

heart-2 — Mon, 19 Oct 2009 21:02:56 -0400

With God all things are possible.

learning disabilities

heart-2 — Mon, 19 Oct 2009 20:59:13 -0400

Hi I hope this helps. I grew up with learning disabilities, and still have some. I don't remember when they started. I got my cancer (ALL) at 3 years old and recieved chemo and radiation. I just remember not doing well in public school and was pulled out. I was homeschooled from the 6th grade on till I graduated. I've gotten some tutoring in the past and have learned ways to get around my learning problems. I never got back up to speed with others. I have found the ways I learn best and use them. I'll be praying for you and your son.

heart-2

Hi

heart-2 — Mon, 19 Oct 2009 20:29:49 -0400

I'm new at this. I'm 28 now and had ALL when I was 3years old. The treatment I recieved back then has caused me to grow brain tumors. Currently I've got 3 on my brain and 1 in my left eye socket. It's good to know that there are people out there like me and want to talk. I am free to talk most of the time if you want.

heart-2

N/A

username32 — Sat, 10 Oct 2009 05:39:34 -0400

This comment has been removed by the Moderator

hi!

liveformiracles — Thu, 17 Sep 2009 18:01:11 -0400

I am 23 years old and I was diagnosed at age 3 with ALL. I love meeting other survivors, and just sharing experiences! :)

Laura

I need to find some survivors of childhood Medulla Blastoma

mghalayini — Tue, 14 Jul 2009 20:13:48 -0400

Irene G...I saw your posting...and would love to reach out to you if you are willing...I have a 10 year old nephew that 4 weeks ago was diagnosed with Medulla Blastoma and underwent surgery the next day. He is now dealing with Posterior Fossa...and just started his 6 week radiation 2 yesterday.

I am trying desperately to find some hopeful survival stories and people that have been through this and came out like a champ...right now...that is what his mother and father need more than anything...to know that there is hope for their boy to have a normal life...to be able to be himself again.

If there is anyone out there that had this childhood Medulla Blastoma and is willing to share thier story, I literally beg of you to respond...we just haven't been able to find those stories of hope to focus on for the future...please respond and share your story...this family needs to know there is a way through and out of this nightmare. Please email me at jamara@pumpkinheadkids.com. thanks.

thank you and prayers to you all....

Jamara

WHAT TYPE OF CANCER DID U

betnyhope — Thu, 28 May 2009 17:53:05 -0400

WHAT TYPE OF CANCER DID U HAVE

Childhood cancer survivor

Aquagirl18 — Thu, 11 Dec 2008 20:57:37 -0500

Wow all of you are amazing. I am so glad I found this website and I just found this discussion today.
I don't know what to say so I'll start by telling a bit of my story.
I am 29 years old and I was diagnosed with Neuroblastoma stage 4 at around 13 months of age.
I was treated in what my doctors have called the dark ages (1979-1980's) I was treated with chemotherapy and radiation because I had tumors on my kidney and adreanal gland, I had surgery to have them removed and the tumor also matastized to my skull area. They used radiation on my skull and lower chest/stomach area. Then my parents were told about an experimental drug and it caused me to go into heart failure. My cancer was wiped out and I have lived with the late effects of my treatments ever since. I have congestive heart failure its also called cardiomyopathy and disabilites in math and science. I grew up as a child feeling like a small adult and in a way my childhood was taken away. I had to grow up fast and I felt different than my peers and I had trouble being accepted socially. Having had cancer changed my life. I learned a wisdom and a strength that I have carried all my life. I feel blessed to be alive. I am proud to be among so many survivors and I strongly feel we are here for a reason.

Hi : )

btcat — Thu, 04 Dec 2008 14:54:10 -0500

I really don't remember a particular amount of time to get back to speed. Unfortunately, some of us don't, particularly those who've had radiation and or brain surgery like myself. But there are many out there who have come back to live full,or at least close to it, mental function. There are several books and organizations out there for survivors One book in particular I can think of is kind of a "handbook" for survivors of cancer. I can't remember the name exactly, but the author is Nancy Keene, i think. A great resource that I used from about the time of my operation/diagnosis is Candlelighter's Childhood Cancer Foundation. thier website is candlelighters.org . Check them out.

Hi : )

btcat — Thu, 04 Dec 2008 14:20:14 -0500

Hi Sparky. Sorry it's taken me forever to reply. Or did I talk to you before? Drain Bamaged memory! How old were you when you were diagnosed. I was 10, about 2 ,months before my birtday.

HI : )

btcat — Tue, 04 Nov 2008 13:53:40 -0500

Beautiful picture Vickie. Congratulations on the wedding anniversary. That would be over year now I suppose.

survivor of childhood cancer

crawfordc — Tue, 06 Feb 2001 21:08:01 -0500

I am a 28 year old survivor of childhood cancer. Iwas diagnosed with a brain tumor in February of '82. Is there anyone else like me out there? Any other adult survivors of childhood cancer? Please,if you're out there write to me.