Childhood Cancer Warrior: Sophia

Sophia is 17 years old and has been through and will go through more medically than most go through in a lifetime. She was born with a condition called Neurofibromatosis type 1, which is a genetic condition that can cause you to grow tumors wherever you have nerves. She has had a cancerous tumor removed from her stomach, tumors in her L hip, L lower leg, on the nerves at the bottom of her spine and a tumor in her brainstem, pons and cerebellum. In addition to NF1, she also has an immune disorder (CVID) and a heart disorder (long QT). When Sophia was 3 she was referred to MD Anderson Cancer center where she was diagnosed with a pontine glioma and up till a few years ago it remained stable and while this area of the brain can’t be biopsied, advanced brain tumor imaging graded it as a below low grade to grade 1. Over the years the tumor has caused problems like nausea, vomiting, eye problems, peripheral vision loss, paralysis of her soft palate, gastroparesis, neurogenic bladder, incredible nerve pain in her arms and legs, dizziness, temperature dysregulation, seizures, dysautonomia, multiple falls with fracture, and severe migraines. She has also had to have multiple surgeries over the years due problems caused by the tumor. When she was 14 years old her symptoms began to get worse and we received news that we already knew was coming, the advanced brain tumor imaging showed the tumor was unstable and increased to a stage 2 pontine glioma and that she would have to start chemo. The chemo was a minimum of a 2 year treatment and possibly she would have to take it the rest of her life. Sophia courageously began a journey filled with faith and hope that the chemo would make the tumor stable again. During those two years she gained 60 lbs over 2 months, has hearing loss, had to be hospitalized more times than we can count, had countless infections, had to have blood transfusions, bone biopsies, gained aversions to food due to daily vomiting, had to be placed on IV nutrition, the list goes on and on and on, but the one thing that halted the treatment with chemo was her kidney’s began to fail, and while the doctors would have liked her to stay on the chemo longer we have had to take a break to allow her kidneys to heal, and in the course of all this the tumor is now relatively stable.  She continues to have to have monthly MRI’s, blood work, IV immune treatment, appointments with specialists, and takes tons of medications on a daily basis for all the symptoms from the tumor and now from the chemo.  And while Sophia has gone through and continues to go through all this…the best way to describe her is sunshine walking into a room.  She has faith that can move mountains and teaches us where our strength should come from.

Sophia has dreams and hopes of one day becoming a child life specialist and working at MD Anderson to help children like her.  As a family we prayed about it and agreed that the public school was not capable of helping her achieve that dream. After doing some digging and research, we found One Day Academy that we feel will help Sophia achieve her goals, however with the burden of medical bills we would not be able to afford to pay for it. While some kids going through what Sophia is going through want to go to disney or on vacation, she wants to be able to learn and grow in an environment that will allow her to achieve the goal of being a child life specialist. Sophia is very capable of learning and doing hard things and is willing to put forth the extra effort that will be needed to learn. She is an inspiration to us on a daily basis and I’m certain God has big big plans for her life to touch others in a big way.