March 1, 2011 – November 29, 2017
Diagnosed: March, 2017
Maven was an adventurous, curious, and imaginative girl who enjoyed dancing, singing, swimming, gardening, fishing, walking in the woods, and day trips with her family. She really enjoyed preschool and kindergarten because it gave her more opportunities to make new friends. Her smile and laughter could light up a room. She was also kind and warm-hearted and loved her brother very much.
At the end of March 2017 Maven was diagnosed with DIPG after experiencing symptoms of a single bad headache and bell’s palsy that lasted about a month. Then she reported double vision which was the red flag to have an MRI that showed a tumor in the pons of her brain. She quickly got a biopsy confirming DIPG and started 30 sessions of radiation. In May, her elementary school threw her an incredible “last day of radiation” princess dance party. She then enjoyed a trip to Disney with her family provided by Make a Wish.
Maven enjoyed a summer of fun and decreased symptoms while her parents researched and stressed over future treatment plans for her because DIPG has no protocol and clinical trials have had little success. We decided that taking a chance on CED treatment in London was Maven’s best bet so in August 2017 her family took her to have another brain surgery and chemo drugs delivered directly to the tumor. Maven and her mother made the most of their subsequent trips to London by planning day adventures outside the hospital when Maven was feeling well. When Maven finished her third CED treatment she started to have an increase in symptoms for a few days but was feeling herself by the time they arrived back in the States. Unfortunately not long after returning she had a grand mal seizure in the middle of the night on Halloween that landed her in the ER. She had an EEG test, a CT scan and an MRI which showed Maven was experiencing widespread metastasis to her spine and spots in her frontal lobe. She was given less than a month to live and went home on hospice care and a large dose of steroids.
Maven had a wonderful November enjoying time with her family and doing things to prepare for Christmas. She even had a lovely ham dinner with friends for Thanksgiving. She then had a massive increase of symptoms and fought hard for three days before passing away into eternity with her Savior on November 29, 2017. Maven is greatly missed by all who knew her but especially by her parents and little brother.