My name is Beth, I am 19 years old, and I have always had the goal to become a pediatric oncology nurse so I can help kids and their families through the toughest time of their lives. I have always been drawn to the medical profession but I became highly involved in learning the profession’s ways about 4 years ago which was my sophomore year of high school.
I began having some abnormal hormonal issues and I went to my general practitioner who ran a few small blood tests but when the results came back as mostly normal she told me that “eighty percent of brain tumors are prolactin producing and since your prolactin is normal you probably don’t have a tumor.”
My mother and I began doing our own research in the local hospital’s library on my symptoms and why I might be getting some of the abnormal tests which brought many results for diseases and syndromes but none that fit perfectly.
I convinced the latest general practitioner to order blood tests over a dozen times that I thought I needed or would be useful in my research. I charted that data and took it, along with research papers, into doctor appointments to try and convince them that I needed a scan of my head since that is where all my research led me. I was able to get a CT scan of my head in April of 2011 but the results came back as normal which any, and every, doctor then looked at as a definite answer that I did not have anything abnormal in my head, as it should be. After more research and more misleading advice from doctors I was able to get an MRI of my head on Friday, September 2nd, 2011 after more than 4 years of trying to convince them that something was wrong. The next Monday was Labor Day which meant no doctor’s office was open but I knew my way around medical professionals after fighting them for so long so I went to pick up the results myself from medical records. In an empty parking lot on a warm day I found out on my own that I have an aggressive brain tumor called a craniopharyngioma in the center of my brain causing a lot of stress of my optic nerves and pituitary gland that is growing up through the middle of my brain.
The only reason I was diagnosed this past September is because of my hard work and persistence. Since I have always been drawn to pediatric oncology patients it is somewhat odd to see everything from the patient’s point of view but that just goes to show that I need to work even harder to be on the caregiver side of the story. I plan on attending the University of California in Irvine to obtain my degree in nursing so I can become a nurse at St. Jude Children’s Research Hospital- the facility that has literally given me a second chance at life so that I can help others going through the same experience. My doctor there told me that he could see the tumor on the CT scan that previously said there was nothing to show and then he told me he might be able to give me my life back by sending me to the University of Florida Proton Center to undergo proton radiation. The study I am in is experimental and there is no chemotherapy known to work on the kind of tumor I have but everybody is hopeful that proton is the answer. My lifespan may be shortened but it will still be full of meaning and dedication to St. Jude.
I am so thankful for St. Jude and all that they are doing for me but mostly it has inspired me to want to do the same for others. While undergoing treatment in Florida I decided that I was not going to sit around and wait for everything to be over. Right then and there I put myself on a mission to change other people’s experiences in little ways. The Beads of Courage program is big in the world of medically fragile children and St. Jude has its own program called Legacy Beads that has the same focus which is to provide a child with a bead after many different medical experiences ( i.e. needlesticks, chemotherapy, surgery, etc.) so that they can look back on their story expressed in a beautiful strand of glass beads . There was no end of treatment bead for the children that have completed proton radiation so I decided I would be the one to create, make, and donate these beads from now own to the children at the proton center in Florida as well as the children at St. Jude. I sought out materials, classes, and glowing glass to make my bead extra special and so that each child may feel like they had accomplished something big when they receive one. I spent so much time during my treatment focusing on getting these beads together that it took the focus off being in a less than ideal situation. My idea came to life and I now donate all of the end of treatment beads to the children finishing up proton therapy like I did for the UF Proton Center, Nemours Children’s Clinic in Jacksonville, and St. Jude Children’s Research Hospital.
Another way I spent my time during radiation was sewing simple yet meaningful blankets for the children and it was also a good way for my mom and I to spend time together. While living in the Ronald McDonald House of Jacksonville I realized that some families come from all over the world with literally the clothes on their back to try and get their children the care that they need and just a small thing like a blanket means so much to them. A blanket is the one thing in these children’s lives that stays the same every day throughout treatment as the therapists and everything else changes around them. During my free time I make and donate blankets to these children as well so I can do my part in helping others. I feel like these small gestures mean a little bit more coming from somebody who underwent the same therapy. It was literally draining to go in to the center every day and face my fears but I hope that I can dissipate a few of those in the future for those who will be tracing my footsteps.
I would use a gift from Nicki to help fund these projects that I do as well as help me obtain my goal of becoming a nurse at St. Jude. I have a very rough track in my future in regards to schooling as well as the fact that nobody knows what my future will look like in regards to my health. I will, hopefully, move forward from this point in my life and become a beacon of hope for those following behind me and getting proton therapy, or any therapy for that matter. I cannot express how much these past few months in treatment have affected me and I feel that the only way I know how to mend a few of those scars is make a promise that I will soon be the kind, smiling, nurse that made all the difference in my treatment.