CBTRF.org  

Go Back   CBTRF.org > Rhabdoid Cancers (AT/RT, RTK, MRT, Others) > Rhabdoid Cancer Discussion

Notices

Rhabdoid Cancer Discussion A forum to discuss anything related to atypical teratoid rhabdoid tumors (AT/RT, AT/RhT), rhabdoid tumors of the kidney (RTK), and malignant rhabdoid tumors (MRT)

Reply
 
Thread Tools Display Modes
  #1  
Old 08-25-2008, 09:14 AM
Katie Shaddix's Avatar
Katie Shaddix Katie Shaddix is offline
Member
 
Join Date: Jul 2008
Location: Porter, Tx
Posts: 10
Default Hello

I thought I would be the first to introduce myself. I am Jonathan's Mom and my husband runs this site. I have a 5 year old daughter and, of course, Jonathan. Up until this year I thought 1st grade in Humble. I now have a new job, taking care of Jonathan and making sure he is healthy and happy. I wanted to thank all of you who have contributed to this site.
Reply With Quote
  #2  
Old 10-25-2008, 10:23 PM
thelynnfamily thelynnfamily is offline
Member
 
Join Date: Oct 2008
Location: Canada
Posts: 15
Default

Hi, I thought I would add to this page..I am Shaine Lynn's mom and I have three wonderful boys, Gabriel who is the oldest, then Shaine, and as soon as we got to go home out of the hospital we were blessed with Darius.
I wanted to say that you guys are amazing- all the research you have done as well as setting up this website for other ATRT families to connect is amazing! So- thank-you for taking the time to think of others and to express interest in connecting with other families.
Reply With Quote
  #3  
Old 10-27-2008, 08:43 PM
staciesmith19 staciesmith19 is offline
Member
 
Join Date: Oct 2008
Posts: 1
Default Hello From Gavin's Mom

My name is Stacie Smith. I have two boys -- Gavin is almost 4 and Garrett is almost 2. Gavin was diagnosed with AT/RT (left, frontal lobe with spread to the full spine) in March of 2008, with an estimated 98% resection. He is on the IRS III protocol through Children's Medical Center of Dallas and received proton beam radiation at MD Anderson. My husband, Jeff, is also a member on this site. He is an amazing husband and father and does a great job researching EVERYTHING regarding Gavin's cancer. I blog at http://smithscooptexas.blogspot.com.

I've been browsing as a guest on this site for awhile now. I figured it was about time I joined. I love what Jeff and Katie have done and are so impressed with the non-profit status and Dr. Biegel's upcoming teleconference in December.
__________________
Stacie
Reply With Quote
  #4  
Old 10-28-2008, 08:46 PM
Jeff Shaddix's Avatar
Jeff Shaddix Jeff Shaddix is offline
Webmaster
 
Join Date: Jul 2008
Location: Houston, TX
Posts: 376
Default

Welcome, Stephanie and Stacie!
Reply With Quote
  #5  
Old 12-20-2010, 03:47 AM
The Kerr Family The Kerr Family is offline
Member
 
Join Date: Dec 2010
Location: Canada
Posts: 2
Default New to site.

Four out of five members of our family have the INI1 gene mutation. We lost our first child Bryce to ATRT just over 5 years ago. My wife was fighting a schawnoma mutation a year ago. Nolan our youngest is currently fighting ATRT. MRI of our daughter remains clear for now.
It has been Dr. Biegel's work at UPenn in joint effort's from our Alberta hospital's that has given us answers to very complicated question's to something that started for us six years ago. We have seen what change 5 years of research advancements have made. Although I don't like it, I now know what is doing this to my family.
Reply With Quote
  #6  
Old 12-20-2010, 07:36 AM
samantha samantha is offline
Member
 
Join Date: Dec 2010
Location: Windsor, PA
Posts: 14
Default

Thanks to you and your husband for everything you all have done for families fighting this horrible battle.

My son Caiden was diagnosed in September 2010. I spend a tone of time on this site and have bugged your hubby a few times for advice. : )

Take care,
Ssm
Reply With Quote
  #7  
Old 12-21-2010, 11:49 PM
Jaidee Jaidee is offline
Member
 
Join Date: Dec 2010
Location: Sydney, Australia
Posts: 5
Default

Hi, my daughter and our family are all the way over in Sydney Australia, and so is ATRT. My daughter was diagnosed in August of 2010, posterior fosa.

Thank you for this website, it is very supportive and helpful.
Reply With Quote
  #8  
Old 12-25-2010, 12:05 PM
Jeff Shaddix's Avatar
Jeff Shaddix Jeff Shaddix is offline
Webmaster
 
Join Date: Jul 2008
Location: Houston, TX
Posts: 376
Default

Welcome to the forum! I hope it is able to help you all as your children's treatment continues, and we pray that they will all beat this terrible disease.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -6. The time now is 07:48 PM.


Powered by vBulletin®
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
CBTRF's logo was donated by Bryce Risher!

All content, images, designs, and logos are Copyright 2009,
Children's Brain Tumor Research Foundation

Geo Visitors Map