Posted: May 12, 2015
2 Years Old at Diagnosis
During her second birthday party, Ellie began to feel ill. Of all the days in her short life to not feel well, it had to be on her second birthday. That night, Ellie threw up and continued to have trouble keeping anything down. Everyone thought it was just a bad bug, but after several days, Ellie found herself in the ER. At the hospital, Ellie was treated for dehydration and sent home with her family.
After two weeks with little sign of improvement, Ellie’s parents realized something more than a “bad bug” was affecting her. In addition to having flu-like symptoms, Ellie was now unable to move one side of her face. Ellie’s parents rushed her to the University of Virginia’s (UVA) Children’s Hospital, and she was immediately scheduled for a CT scan. The images showed hydrocephalus (excess fluid in the brain) and a tumor close to the pineal gland. The pressure created in Ellie’s brain by the excess fluid provided an explanation for Ellie’s severe flu-like symptoms and facial paralysis.
Ellie’s first surgery to insert a drain through her skull to relieve pressure occurred right away at the University of Virginia. While she was under anesthesia, her medical team took the opportunity to do an MRI. The MRI results prompted Ellie’s medical team to schedule surgery immediately to remove the tumor. Her second surgery happened two days later on Valentine’s Day.
Ellie’s surgeon was able to remove about 80% of her tumor. Pathology reports revealed what the surgeon had suspected. The tumor was pineoblastoma. Treatment would involve six rounds of chemotherapy at St. Jude’s Children’s Research Hospital hundreds of miles away. Carly, Ellie’s mother, was 30 weeks pregnant, so Ellie and her dad, Richard, headed for St. Jude’s in Memphis to begin treatment. Carly waited at home to have the baby and care for Ellie’s 6-year-old brother, Noah.
Ellie’s family and friends provided constant support. Her parents’ co-workers donated sick leave, and friends donated iPads so Carly and Noah could stay visually connected to Ellie and Richard through FaceTime. Carly also appreciated being able to talk to Ellie’s medical team via FaceTime, which helped her to feel more involved in Ellie’s care. Once baby Sarah-Grace was born, the entire family was reunited at St. Jude’s Target House where they stayed for Ellie’s remaining chemotherapy treatments.
Once the pressure on her brain was relieved, Ellie returned to being an easy going, happy 2 year old. As Carly says in her blog, “Ellie had a huge smile and adorable dimples that could make the world a better place any time of day.” Ellie continued to smile during her time at both UVA and St. Jude’s. She thanked doctors and nurses for their care. She rode the red wagon through the halls of St. Jude’s. She danced with her dad around St. Jude’s jukebox. She put stickers on everything and everyone! She even walked in CureSearch’s 2013 Charlottesville Walk.
The fourth round of chemotherapy was during the Fourth of July holiday. Ellie and her family were already four months into their fight against pineoblastoma, and now, there was reason to hope. After the conclusion of her most recent round of chemo, an MRI showed her tumor was gone, and a lumbar puncture indicated her spinal fluid was free of cancer cells. Despite evidence of being cancer free, Ellie would continue with two more rounds of chemotherapy because of pineoblastoma’s high rate of recurrence.
Unfortunately, an MRI in September showed new spots on Ellie’s brain. The cancer had come back, and it had spread. September was a very tough month for Ellie and her family. Radiation was used to shrink the new spots and prolong her life, but Ellie’s brain swelled. The swelling caused tremors that made Ellie’s remaining time less valuable. Carly and Richard decided to take Ellie home. Ellie and her family enjoyed a few more months of quality time.
Ellie’s battle with cancer ended on December 22, 2013, just short of her third birthday. Ellie’s family has celebrated her birthdays since her death with genuine, no holds barred, birthday parties that she would have loved. Guests are asked to bring donations in lieu of gifts. The donations are pooled and given to carefully selected charities. The celebration of Ellie’s fourth birthday yielded $300 in birthday gift donations which made a generous addition to Ellie Blaine’s 2015 CureSearch Charlottesville Walk Team, “Princess Strong.” This year, you are likely to see the Blaine family at the Charlottesville 2015 Walk — continuing the fight to end children’s cancer.
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