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Our team is running in support of Sophie and her continuing battle against her brain tumor. The Race for Hope - DC presented by Cassidy Turley raises funds to support innovative research initiatives and support services for brain tumor patients and their families. This amazing event relies on the dedication and enthusiasm of individuals, families, teams, volunteers, sponsors and donors. Thank you for your support in helping us find a cure for brain tumors!
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 surgery 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 even though some remained that we may avoid chemotherapy for awhile. Well, unfortunately, at MRI a month later it was growing back aggressively 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 monitoring and follow-up new small spots towards the front of the brain developed. Since they were so small and slow growing we were simply keeping a watchful eye on them. Then, in November 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. There had been continued growth in the original tumor while the new spots have stabilized. As a result we added another oral drug to the mix in August of that year which resulted in Sophie's platelet counts dropping to the point that she needed a transfusion 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 able to have her approved for participation in the trial and she began taking the new medicine in October of 2012. We were very happy with results and she even gained weight quickly. Her MRI in December of 2012 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).
Beginning with our the MRI performed March 29th, 2013 Sophie's tumor began showing signs of shrinking with new drug she is on as part of the clinical trial. We were very excited with this new development and it just shows how important funding is for research and development of new drugs. Over the next set of MRIs we saw continued shrinkage and stability in the tumor while also observing her begin to blossom in school as well as on the playground. We are thrilled with the results so far and the family will be honored at an Italian Embassy reception in February acknowledging Sophie's bravery in being part of the initial group of children on the clinical trial.
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.
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