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Wilms' Warriors

Have a kid that has been diagnosed with Wilms' Tumor, are you a survivor yourself or do you just want more information? Join us!

Members: 48
Latest Activity: Oct 24, 2013

http://listserv.acor.org/archives/wilms-kids.html :A listserv for parents of kids with or that had Wilms' as well as adult survivors.

Discussion Forum

What is it you wish you had been told or not told?

Started by Carrie Black. Last reply by Samantha Apr 28, 2011. 16 Replies

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Comment by Amanda Doyon on October 24, 2013 at 7:55pm
OCT 17th was Jacksons follow up on the seizures. They diagnosed him with Hemihypertrophy fully, plus they believe the seizures were caused by an bad anaphylactic reaction or mast cell reaction, and because Jackson has hemihypetrophy and mastocytosis they believe he has a tumor in his kidney they said it's highly likely he does, they are 100% sure he is systemic. The lympnodess in his neck have gotten... bigger so they are going to do a biopsy and ultrasound of those remember these have been about the size of an golf ball for over a year, they are also going to do a ultrasound of his kidneys, liver, and abdomen. They are planning to biopsy his kidneys and liver. He is going to a pediatric neurologist and back to oncology, genetics appointment on Halloween. This is not looking good actually this would be a tough prognosis to beat. I thought he was doing so good. This is horrible I just want to scream and cry but I can't because today is also Andrews 7th birthday. They are panning on reffering him over to Dr. Lynchberger that Jennifer Galyeans son goes too. But I am going to have to do a fundraiser to get him their. Forget my needs I don't care I ever get better. My son could pass away if he doesn't get the help he needs. I don't know what to do I am so lost. god why just why.
Comment by Eric Mitcheltree on January 29, 2013 at 3:24pm

All, 

Camp Sunshine in Casco, ME will be having a Wilm's Tumor Session this spring. The dates are April 17-21. 

http://campsunshine.org/programs/

Last year we had 8 Wilms families there. It's a great time for the family and great opportunity to talk with other Wilms families!

Comment by Mary Anne Thomas on March 25, 2009 at 5:42am
Hi everyone. I am a 42-year-old survivor of Wilms. I was diagnosed in 1969 when docs had no idea how to treat this type of cancer. They basically told my parents they would try certain things but only gave me 2 to 4 percent survival rate. Thank goodness my angel stepped in and took over my care. He was always there up until his death two years ago. He still followed my health once a year until I moved out west. Then he was always available by telephone either at his office or at his home. I am seeking survivors in their early 40s to swap stories and share information on long-term effects. The long-term effects of the treatment have been difficult especially those dealing with the radiation damage. I hope someone out there will be able to guide me to another member. Thanks. My prayers are with all the parents going through cancer with their children.
Comment by Renee Frugoli on March 8, 2009 at 4:27pm
Felicia was diagnosed with stage 5 favorable cancer on December 10th 2007. For now she is well and we go back for scans on April 8th. Her story is on www.caringbridge.org./visit/felicia
Comment by Kris Rech on March 8, 2009 at 12:43pm
While in DC in February for CureSearch Team Leader Training, Diane and Steve Brestel and myself had a meeting with CureSearch to discuss the CureSearch National Wilms Tumor Initiative.

At the time of the meeting we learned that the balance in the Initiative was $218,000.00

We also had a conference call with Dr. Dome. During the conference call he updated us on how the money in the Initiative was going to be spent, and the process that was used to determine what grant would be funded.

Discussion was held about the COGS Anaplastic Wilms Tumor and Rhabdoid Tumor Meeting.

I will contact Dr. Dome and ask him to send us an update on the meeting and to also give us an overview of the grant to Dr. Elizabeth Perlman that was funded.

THANK YOU TO EACH AND EVERYONE OF YOU WHO HAS CONTRIBUTED TO THE CURESEARCH NATIONAL WILMS TUMOR INITIATIVE!

You should be very proud of the research that will be taking place as a result of your efforts.
The Wilms Tumor community has made an impact on Capital Hill, within CureSearch at Team Leader meetings, and at Reach the Day.

On behalf of Steve and Diane Brestel and my husband Jim, I look forward to your help in getting the Conquer Childhood Cancer Act funded, and to more research funded through the Initiative.

Kris Rech
Comment by Renee Frugoli on February 14, 2009 at 6:06pm
Felicia is a survivor of stage 5 wilms as of August 20th 2008. Her story is posted on www.caringbridge.org./visit/felicia
Comment by Carrie Black on November 26, 2008 at 11:14pm
Orange I have seen for Leukemia.
Comment by Carrie Black on November 26, 2008 at 11:14pm
I have never seen orange for kidney cancer, only green.
Comment by Tasha Yaksic on November 24, 2008 at 5:26pm
I think that the color was changed along time ago. There is a great web-site that I found that explains what each color means. It also has cool cancer awarness things such as clothing, wrist bands, and car magnets. It also has other links to other sites, It tell you how to start and orginize fundraisers. www.choosehope.com
Comment by Tasha Yaksic on November 24, 2008 at 5:21pm
How wonderfull to have found others!
 

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Discussion Forum

What is it you wish you had been told or not told?

Started by Carrie Black. Last reply by Samantha Apr 28, 2011. 16 Replies

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