Ask anyone and I am sure they would say being diagnosed with cancer is the worst thing imaginable. No doubt, that’s true. I still shudder at the memory of hearing the words “Emma, you have leukemia” for the first time. Yet, over the past several years, I have come to learn firsthand that it’s possible to tum life’s biggest challenges into something positive and life changing.
My life changed completely on January l7th, 2012, when I was diagnosed with Acute Lymphoblastic Leukemia. As a high school student/athlete who had always enjoyed having good health, the diagnosis came as a complete shock. I immediately spent the next two weeks at Children’s Hospital of Wisconsin undergoing intense chemotherapy. The effects of the chemo, the constant stream of doctors and nurses, and the numbing reality that I was now a cancer patient were terrifying. At the same time, I was flooded with the love of family and friends coming to visit, bringing with them gifts and comfort items, and keeping me company in a frightening and unfamiliar place. Looking back now, that overwhelming love and support was so important in helping me endure those first difficult weeks and the tough road that lay ahead.
While at the hospital, I also came to notice the other children and teens that had spent weeks and even months at the hospital, many of whom were not as fortunate as I was. I knew then I wanted to help these brave kids in some small way. I thought about starting my own foundation to help ease the pain and difficulty of my fellow patients. But due to the intensity of my chemotherapy I had to be patient with my “patient project.”
As I entered my maintenance phase of chemo, and my energy began to return, my Mom and I began brainstorming ideas for our “mission” and potential names for it. On a cold Saturday morning, at our favorite coffee shop, we decided to make it happen. Emma Rose – A Patient Helping Patients was born on the 10-month anniversary of my diagnosis. The foundation has two primary missions: We collect small comfort items such as fuzzy socks, lip balms, hand sanitizers, coloring books and games for the brave kids in the cancer unit at Children’s Hospital of Wisconsin. We also seek to raise awareness about a little known cancer statistic, namely that only 3.8 percent of all cancer-related funding nationwide goes towards childhood cancer research. That simply needs to change. I now have more than 12,000 followers on our Facebook page who continue to support my mission and we continue to bring in around 50 gift bags for the patients each month. It makes me so happy to be able to bring some joy to the patients who have to endure so much. I knew immediately how they felt.
I finished my two and a half year treatment in May 2014, just a week before my high school graduation. For the next two years I came to clinic almost monthly to check blood counts and get a physical exam. I was cancer free, happy, and loving nursing school. I was finally getting to live a normal life that I was robbed of while I was in treatment. However, on December 27th of 2016, after a month of suspiciously low blood counts, I went in for a bone marrow biopsy to confirm what we suspected: relapse.
I was admitted that night and started a treatment protocol even more intense than the first time. I spent the entirety of the months of January, April, & June inpatient. I never had any complications during my first treatment but this time I seemed to get every complication possible. I had a blood clot, allergic reactions to several medications, developed idiopathic pneumonia syndrome, pulmonary hypertension, c-diff, & neutropenic pan colitis, and ended up
septic in the ICU twice. In order to kick this cancer for good, it was decided a bone marrow transplant was my best option. Fortunately, my brother was a 10/10 match. I had extremely intense chemo and total body radiation 2x a day to kill off my old marrow and I received my new life saving marrow on June 1st. I’ve been recovering at home ever since and am seen weekly in clinic to check blood levels. I still have side effects as a direct result of the treatment and
transplant but the doctors are very happy with my progress.
My disease, difficult as it has been, has opened many doors. “P4P”, as I call my page, continues to grow and reach more people every day. Through my Facebook page, I have also been able to share facts about pediatric cancer research and the desperate need for more funds to combat this horrible disease. Great progress has been made in treating the disease. But we could be doing so much more!
My disease has also impacted my career choice in a profound way. Before my diagnosis, the thought of being a nurse was the furthest thing from my mind. Medical treatments scared me. Very little scares me now. My dream is to be a nurse in the bone marrow transplant clinic at Children’s Hospital of Wisconsin. Someday I hope to make a difference at Children’s Hospital of Wisconsin, the hospital that helped me. And I hope to bring a little joy to other children
suffering from cancer, hopefully inspiring them to do the same.