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Clear Cell Sarcoma of the Kidney

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Current kids




Jacob not active anymore

Jacob not active anymore

Date of birth: April 5, 2001
Main diagnosis: AVM (ateriovenous malformation)
Special interests: Computer games, guitar, music
Mom: Stephanie
Siblings: Claudia

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Jacob not active anymore
Our Jacob was born April 5, 2001. He is tall, skinny & fun to be with. He has a great sense of humor, loves to play guitar & harass his sister. He’s into computers & music. His diagnosis prevents him doing many “typical” boy things like climbing, sports & wild rides. On Valentine's Day 2010, Jacob complained of a headache. His headache continued to worsen until he was screaming and crying out in pain. We took him to the local ER where CT imaging revealed hemorrhaging in his brain. He was air lifted to a children’s hospital in a large city nearby, where he was placed in ICU. Testing confirmed that Jake had an AVM or AV Malformation: http://www.mayoclinic.org/diseases-conditions/brain-avm/home/ovc-20129992. The location of Jake’s AVM made it inoperable by typical surgical means. In March of 2010, he had his first procedure to attempt treatment. This insertion of surgical glue into the vessels of the AVM was unsuccessful. In May 2010, his care was transferred to Children's Hospital of Wisconsin and the Medical College of Wisconsin (Froedtert Medical Center). On Oct 27, 2010, Jake had his first Gamma Knife radiation surgery: http://www.mayoclinic.com/health/gamma-knife-radiosurgery/MY00206. This was followed by 5 years of waiting, MRI’s, angiograms & doctor visits. Just as we were anticipating an “all clear” from the doctors at the end of those long 5 years of waiting, we were met with disappointment. A new AVM had developed & more surgery was required. Jake’s lifestyle restrictions would continue & more stress was in store for all of us. On October 14, 2015, Jake underwent his second Gamma Knife radiation surgery. He came through it with flying colors physically. Emotionally he struggles with anger & frustration. We all now repeat the years of waiting, MRI’s, angiograms, doctor visits & anxiety. Jake will appreciate any card you wish to send him. Thank you for your care of our Jake!