My name is Alyssa and I am the oldest of 3 siblings. I am delighted to share my sister’s journey and the impact it has made to our society.
My younger sister Elizabeth was born January 17, 1996. She was a wild child from the beginning and took to walking like a fish to water by the time she was two years old; it wasn’t long after that she began running. One day she fell, of course this wasn’t the first time she had fallen; but this fall would mark the beginning of a life change which neither of my parents saw coming. It would be the first of many falls to come.
On January 20th a few days after Elizabeth’s second birthday, she stopped running and a week later she stopped walking. She rapidly began to digress and returned back to crawling. The happy, wild child we once knew was converting to someone else entirely. She became very sickly and was unable to contain anything she ate and she would cry throughout the day. All the developed cognitive and motor skills Elizabeth developed in the first two years of life had disappeared.
My parents took Elizabeth to the hospital where she was admitted and a series of thorough testing began. The tests concluded that Elizabeth, at two years old was diagnosed as having Medullablastoma, a high-grade tumor located on the cerebellum.
“Medulloblastoma is relatively rare, accounting for less than 2% of all primary brain tumors and 18% of all pediatric brain tumors. More than 70% of all pediatric medulloblastomas are diagnosed in children under age 10. Very few occur in children up to age 1,” as documented by American Brain Tumor Association.
Elizabeth was diagnosed early enough to have her tumor surgically removed with very little chemotherapy and radiation; overall, she had an extremely positive outlook. Her recovery allowed her to return to the wild child we once knew.
Unfortunately, Elizabeth’s tumor returned two years later when she was four years old. This time, the tumor had spread to her spine. Radiation and chemotherapy did not guarantee my sister’s chance of survival. It was noted, if she did survive she would have developmental issues accompanied by life challenges.
After a week of tears and frustration, my parents were offered a chance to participate in an experimental stem cell transplant study. Elizabeth became Alabama’s first child to survive a stem cell transplant. The stem cell transplant replaced the damaged cells in her brain and spine. This method allowed a faster recovery time with less chemotherapy and radiation.
Because of the stem cell transplant my sister received, Elizabeth was able to survive her life threatening illness. Life has not always been easy; despite the fact that she has physical and mental developmental issues, and hearing loss in both ears, to those of us that love and value her being, she is absolutely perfect!
Today, Elizabeth is eighteen years old, alive and extremely happy; she will be graduating from high school in 2015. Even though Elizabeth does not realize it, she is a hero.
Overall, many lives have been saved because of patients like Elizabeth and families that support research. Research has provided patients and families dealing with Medulloblastoma a variety of medical options, along with stem cell usage. Children can receive stem cell transplants with the possibility of beating cancer and tumors; ultimately allowing some to live without many side effects caused by chemotherapy and radiation.
I share my sister’s journey to let other children and family members know they are not alone. There is a light at the end of the tunnel!
M.I.R.A.C.L.E. is dedicated to bringing children, families, physicians, educators and communities together. We are creating a community of health awareness along with allowing families to share their stories of love and endurance.
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