Visit the Race for Hope - DC homepageImage: Race for Hope - DC logo
Image: Race For Hope - DC
Sunday May 5, 2013     Freedom Plaza, Washington, DC
     Forgot Username or Password?

2013 Race for Hope - DC

Team Sophie Bear

Sophia Posner-Brown is 6 years old. Sophie loves singing, dancing, Taylor Swift, playing hopscotch, and anything that involves her twin sister Isabelle. Her family and friends call her Sophie bear.
 
 
Sophie's story
Sophie first became sick as my family started a new adventure in Indonesia. We had just arrived from our long flight when she started tilting her head. We figured it was just from sleeping poorly on the long flight. After about a month or so she began throwing up phlegm almost every morning. The pediatricians there didn't seem to have an answer so we finally ended up flying to Singapore. Almost immediately they realized that she had a brain tumor and informed us that they would have to operate to relieve pressure in the brain from fluid build-up. At the same time they could attempt to remove as much of the tumor as they could. After surgery the doctor informed us that he had to stop the surgery because the tumor was located in the brain stem and he couldn't safely remove the tumor without causing permanent damage or possibly killing her. After a week of recovery we flew back to Washington DC to meet with the team at Childrens Hospital led by Dr. Packer. A second suregery was scheduled to see if we could remove enough of the tumor safely with the tools and expertise of Dr. Myseros. After the surgery everyone was quite pleased and felt that eventhough some remained that we may avoid chemotherapy for awhile. Well, unfortunately, at MRI a month later it was growing back agressively so we had to begin chemotherapy at the end of June.

Sophie spent 14 months undergoing treatment like a champ with the help of parents and twin sister Isabelle. We celebrated the end of chemo at the end of July 2010. However, three months later the MRI showed that the tumor was growing again except this time towards the back of the brain and the team felt that another surgery was the way to go. Sophie underwent her third brain surgery in December of 2010 which removed most of the new growth. In the following six months of moitoring and follow-up new small spots towards teh front of the brain developed. Since they were so small and slow-growing we were simply keeping a watchful eye on them. Then, in Novemeber of 2011 it was decided that we would need to begin chemotherapy again, this time with an oral medication that could be administered at home.

Since then there has been continued growth in the orginal tumor while the new spots have stabalized. As a result we added another oral drug to the mix in August of this past year. This result in Sophie's platelet counts dropping to the point that she needed a transufsion and was taken off all chemo drugs until they rebounded. As you can imagine we spent many days in September in the hospital. On the bright side we were informed of a new clinical trial that was getting ready for approval for Sophie's age group. We were abe to have her approved for participation in the trial and she began taking the new medicine in October. We have been very happy with results until now and she has even gained weight and is now over 15 kilos for the first time ever. Her latest MRI in December showed no growth in the tumor since she has been on the trial drug (requires her to take two pills in the morning and one at night as well as weekly visits to the hospital the first month for blood draws to make sure there were no problems). She's been a trooper as usual (notice I didn't say angel as we all have our bad days, she has only threatened to hit me twice while holding her down for blood draws).

Exciting news from our last MRI performed March 29th  . . . Sophie's tumor is shrinking with new drug she is on as part of the clinical trial. We are very excited with this new development and it just shows how important funding is for research and development of new drugs. Please continue to recruit others and share her story as we hope that this is the beginning of something exciting for all who battle this disease.


 

 
Please join our team or consider making a donation in Sophie's honor. Every donation, no matter how large or small, helps this important cause. Thank you for all of your support, and we hope to see you all at the race on May 5th. If you have any questions or need additional information, please free to contact Steven at mr.steven.brown@gmail.com 
 
 
 
Team Sophie Bear Raised
Steven Brown $2,470.00
Dana Aronovich $40.00
Francisco Barrenechea $20.00
Guillermo Barrenechea $40.00
Lucia Barrenechea $20.00
Clara Bilbao $40.00
Elana Bilbao $40.00
David Boone $40.00
Yanire Brana $40.00
Greg Cabana $385.00
Laurel Cappa $40.00
Azuree Catledge $1,004.00
Esther Cha $45.00
Janine Chiappa McKenna $40.00
Kathleen Claassen $145.00
Elizabeth Creel $40.00
Cecilia Cussianovicch $40.00
Teresa Cutolo $40.00
Susana de la torre $40.00
Rebecca Dupont $90.00
Molly Fitzgerald $40.00
Lynne Funk $150.00
Adela Garzon $40.00
Lorraine Gnecco $40.00
Miguel Granier $440.00
Cynthia Green $100.00
Maria - Mann Gutierrez $40.00
Madaleine Hillsberg $45.00
Kelsy Horton $45.00
Brooks Hundley $40.00
Caroline Hundley $65.00
Courtney Hundley $470.00
Jamie Hundley $40.00
Giulia Ibi $20.00
Paolo Ibi $20.00
Lauren Johnson $40.00
Chloe Kaplan $40.00
Lisa Krochmal $40.00
Sebastiaan Kwakkenbos $40.00
Anne LaFond $40.00
Alix Landais $259.00
Kathryn Legomsky $45.00
Steve Legomsky $40.00
Barry Long $40.00
Sophia Magalona $45.00
Mann Centaurs For Sophie $2,595.00
Molly Martling $40.00
Kathleen Maxwell $50.00
Clementine McKenna $40.00
Chiara Melucci $40.00
Meredith Moore $130.00
Martina Moreni $20.00
Matteo Moreni $20.00
Stephanie Mullen $240.00
Alexandra Naum $20.00
Elena Naum $40.00
Katherine Naum $40.00
Nicholas Naum $20.00
Sherban Naum $40.00
Tim Oehling $40.00
Leslie Patykewich $50.00
Sofia Pena $40.00
Elizabeth Posner $181.00
Jessica Posner $715.00
Matthew Posner $45.00
Michael Posner $45.00
Sophia Posner-Brown $50.00
Pru Pru $40.00
Catalina Rincon $40.00
Joseph Ryan $40.00
Mary Ryan $40.00
Ava Scott $40.00
Colin Scott $40.00
Christopher Skena $45.00
Molly Skena $20.00
Naomi Skena $40.00
Louis Tartaglia $40.00
Seth Tillman $95.00
Rogerio Zandamela $100.00
Team Gifts $10,001.00
Denotes a Team Captain

 

© 2012 National Brain Tumor Society and Accelerate Brain Cancer Cure. All rights reserved. National Brain Tumor Society and Accelerate Brain Cancer Cure are each recognized as tax-exempt under Internal Revenue Code section 501(c)(3). Email communications will be sent by both National Brain Tumor Society and Accelerate Brain Cancer Cure. Email communications will be sent by both National Brain Tumor Society and Accelerate Brain Cancer Cure. We value the trust you place in us. Learn how we use and protect your personal information. National Brain Tumor Society privacy policy. Accelerate Brain Cancer Cure privacy policy. | Print Page