Bebe is beautiful. Her smile is radiant. Her skin is soft and silky smooth. She loves pink and princesses and animals of all kinds. She has an amazing sense of humor and her laughter is contagious. She is 4 years old. She also has a rare form of brain cancer.
Barbara, as she was known back then, went to preschool with many of our kids at Little Hands in 2008. In May 2009, her parents noticed a protrusion of her left eye. A CT scan confirmed that a brain tumor was occupying more than 25% of the space in her cranium. At 2-1/2 years old, she underwent a 17-1/2 hour surgery at Lucile Packard Children's hospital which removed an estimated 99% of the tumor. She was subsequently diagnosed as having an ETANTR (Embryonal Tumor with Abundant Neuropil and True Rosettes).
What followed next is a two-year whirlwind of treatment at 3 different hospitals: Lucile Packard Childrens' Hospital, UCSF, and MD Anderson in Houston, TX. For the first 8 months of treatment, she spent an average of 3 weeks a month in the hospital. Because of the frequency and volume of chemotherapy she was to have, doctors implanted a port or catheter under the skin of her chest. She has endured countless ‘pokes,' rounds of chemo, hair loss, nausea, mouth and throat sores, appétit loss, weight loss, MRIs, and audiology tests.
After 8 months of an experimental, high-dose chemotherapy regimen, her cancer returned. Given little hope of a positive outcome from her medical team at Stanford, her parents took her to MD Anderson Hospital in Houston, Texas. She and her father lived there for 10 weeks so that she could receive proton radiation treatment. The radiation oncologists at MD Anderson developed a radiation and chemotherapy protocol that would spare the learning and memory centers in her brain from the harshest of the side effects of radiation while giving her the best chance of a positive outcome.
While her cancer is not cured," a treatment plan developed by MD Anderson and administered through UCSF combining proton radiation and targeted chemotherapy protocol has been able to stabilize the her disease for the time being. Her prognosis is anything but certain and she and her family live every day with the unknown looming. But she has come a long way from February 2010 when her parents were offered 2 choices: Hospice care and 3 months to live or high dosage radiation with almost certain brain damage.
This journey has been heartbreaking for Bebe's parents, family and friends. Her parents have made treatment decisions that no parent should ever have to make, but they tackled this obstacle head-on. They accept that God has given them this journey and they treasure every minute with their little princess.
Today Bebe is a vibrant, witty, happy, smiley, friendly girl who loves school. She loves friends and plays well with anyone. Her hair is growing back and she is beautiful. Between treatments, she has a normal childhood. She has befriended her many medical caretakers and is wise beyond her years. She does not know there is a scar on her head and her close friends never quite notice that she is or was ever sick.
The total cost of her treatment is staggering. The value of her life is priceless.