Our beautiful daughter Anna Yan Ji Arabia was born in China and adopted into our family at 9 months. She was a fun, energetic girl who loved hanging out with her friends, loved computers and technology and her iPhone! She was often seen during chemo treatment downloading songs from iTunes and convincing her doctors they should all switch to iPhones. She was a member of the Drury High School Drama and Band and was involved in theatre for many years. She played the clarinet since elementary school and marched in the Drury Band. She had many cousins and she loved going to the beach and camping with them and just hanging out. She loved to shop and travel. She visited DisneyWorld many times when she was young, and loved to travel to NYC as she got older. Her Make a Wish Trip was a shopping trip to NYC!
Anna was diagnosed at age 13 with Gliomatosis Cerebri after a fall with a seizure, she had no symptoms before then. She had a partial resection and biopsy done at Children's Hospital Boston and was treated at Dana Farber Cancer Institute. She had IMRT Radiation with Temodar, but developed a severe CMV infection once she started the high dose Temodar chemo cycle. She was hospitalized for an extended period, then started Avastin. As her tumor progressed we tried a number of different treatment protocols and clinical trials. A clinical trial of MK 2206 was the one treatment that she was able to stay on for almost a full year, before progression again. She had a total of 10 different treatment protocols over the period of 3 ½ years in treatment. Many of which were targeted therapies, which involved oral medications, which she tolerated fairly well. In November of 2012 her MRI showed significant change and treatment was stopped. We are confident that she received the best care available from the most highly skilled and compassionate care team. We are forever grateful.
Anna lived each day to the fullest and loved having her friends and family over for many visits, parties and nail polish sessions even after she was sick. She continued with school as long as she was able, and had a tutor visit at home when she could no longer go to class. She loved adventures and even when she needed to be in her wheelchair we would still go out and take her dog Ayla for walks or go to the mall shopping, she was unstoppable. Anna loved helping others. She was able to turn even her most difficult challenges into ways to help others. The most difficult part of Anna's experience was losing her hair. Through fund raising and gifts, she bought almost $ 2,000 worth of bald Bratz dolls to give to other kids who had lost their hair to cancer treatment.
Her faith was very important to her and helped us all transition from her life with us to her place as a beautiful angel in heaven. We are continuing her love of helping others with a fund we have developed in her name. The mission of the AYJ Fund is to bring smiles to kids with cancer, keep them connected to friends and school through technology, and to find a cure for Gliomatosis Cerebri and other brain tumors. Visit AYJ Fund on Facebook and www.AYJFund.org.
Medical History / Treatment:
October 2009 Brain surgery with partial resection / biopsy 10/09
November 2009 IMRT Radiation_ along with low dose Temodar
February 2010 - April 2010 High dose Temodar (developed severe CMV infection / stopped)
July 2010 Avastin
Fall of 2010 Temsirilomus
February 2011 Temsirilomus plus Avastin ( developed severe headaches / stopped)
March 2011 - May 2011 Clinical Trial EZN 2028
June 2011 - August 2011 Disatinib with Avastin
August 2011 - September 2011 Clinical Trial LDE 225
October 2011 - August 2012 Clinical Trial MK 2206
September 2012 - November 2012 - Clinical Trial Imetelstat
November 2012 MRI showed rapid progression, all treatment stopped
February 14, 2013 Became an angel
In 2012 she had genomic testing which identified a G598V mutation, which is on the EGFR Pathway. MK2206 ,which was the only treatment Anna was able to stay on for almost a year without showing progression on her MRI, was a clinical trial drug which targeted the EGFR pathway.