Carly...first day of 2nd grade!
Carly has been was diagnosed with a genetic disorder, Neurofibromatosis 1, and developed innoperable brain tumors, bilateral optic gliomas to the chiasm. She has been on chemotherapy for 2 1/2 years and the tumors have remained stable.
COME VISIT CARLY'S NEW WEBSITE AT: WWW.CARLYSTEAM.COM
Treatment So Far: Surgery for her Port-A-Cath inserted in her chest for chemo/blood draws Carboplatin/Vincristine 11 treatments(chemo) Temodar 2 rounds(chemo) Vinblastine weekly(chemo) 14 MRI's of the Brain and Orbits 2 of the Spine 2 Blood Transfusions Foot/Leg braces -no longer needed!! Countless Oncologists, Neurologist, Endocrinologist, Opthamoloigist and blood tests
Side effects from all of this have been anaphylactic shock from the Carboplatin, reversable nerve damage from the Vincristine, mild hair loss, low blood counts
We are grateful for the love, support and prayers from all of you. Please take a few minutes to sign our guestbook, it is a great source of encouragement for our family!
Journal
Friday, October 17, 2008 12:57 AM CDT Carly turned 8 yesterday! She has been looking forward to her birthday for weeks and we are planning a fun weekend for her.
My Mom and I took Carly to a doctor in LA for a second opinion, he is a neuro-oncologist that specializes in pediatric brain tumors. He has recomended we do a Spectropscopy MRI, which will show exactly what the spot on the brainstem is. We will do this MRI the first week of December and I will post as soon as we get the results.
Thank you for keeping Carly and our family in your prayers..please pray that Carly will not be headed to yet more treatment from her NF.
Blessings, Chris
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Hospital Information: Patient Room: Not An Inpatient At This Time San Diego Children's Hospital 3020 Childrens Way San Diego, CA 92123 858-966-5877
Links: http://www.carlysteam.com Our New Website! http://www.ctf.org Childrens Tumor Foundation http://www.virtualtrials.com Information on Optic Gliomas (brain tumors)
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