Nevaeh was born on May 22nd 2007 at Ft. Lewis, WA. She came into this world fighting. She was born with Gastroscesis (all of her intestines, bladder, & 1 ovary outside her body). She was in the NICU for the first month and a half of her life. Since then she has had no complications until April 2011. She started to cross her eyes and then became weak on the left side of her body. With a CT scan our lives changed. By the end of April Nevaeh (3 years old) was diagnosed with a Tumor in her brain stem, called a Diffuse Intrinsic Pontine Glioma. A rare type of tumor that is rapid growing and affects the central nervous system; like sight, function of limbs, swallowing, breathing and more. This type of tumor is high grade and not operable. Thus far there is no known cure. We, like many out there are hoping for a miracle. After meeting with doctors and discussing treatment we soon realized that there has not been much success with treating this type of tumor. We found a case study at the Children’s Hospital Denver that seemed as if it might help. It was a shot in the dark, but our little girl deserves the best chance possible. For the study they confirmed her diagnosis with a biopsy and two days later they placed a central line for chemo. The next week, on May 16th, Nevaeh started her first of 6 weekly infusions of chemo and her first of 33 treatments of radiation. From May 9th till June 30th we stayed in Denver during the weekdays and went home to Colorado Springs on the weekends. Nevaeh got the month of July off from treatment but ended up back in the hospital with a bacterial infection in her central line. Nevaeh had a second MRI done on July 25th, it showed the tumor had shrunk. On the 1st of August Nevaeh started her second phase of the case study which consists of two types of chemo. Every Monday we drive to Denver for a 2 to 3 hour infusion of one type of chemo. The second type of chemo is a 5 day chemo that rotates 2 weeks on 1 week off. This second chemo is a 1 hour infusion and is given by a nurse at our house. Nevaeh will continue this schedule of these two types of chemo continuously until April 30th 2012 (33 weeks).
Prior to this we were just like any other young Army family. I myself am 26 and we have been married 6 years. My husband, Brandon is 27 years old and has been deployed 2 times. On his last deployment, disaster struck when he was out on a mission, and his wrecker truck hit and IED. The blast had such and impact that all the force went though his spine and head. Brandon was medivacked and was awarded a Purple Heart for being injured. He is now going though the med board process to be medically retired from the Army. Had my husband not have been in that accident a year and a half ago he might have been deployed again when our daughter was diagnosed. Yet that leaves a lot of questions for the future that are all up in the air right now, such as when will he get out of the Army, and will Nevaeh still have health insurance. Our biggest concern is how much will get and can we afford to live. We are keeping our heads high and our spirits even higher and we know it will all work out in the end.