As you all know, I am in training for my first marathon, which I will complete in September. I have decided to run in honor of a beautiful and brave little girl named Emma. I met Emma’s mom, Sarah, when I worked for my parents company about 6 years ago in North Carolina. We bonded over many things, including being two of only a few young women in a company made up of mostly men. We also bonded when Sarah became pregnant. I was desperate for a baby of my own, but my husband, Rob, and I just weren’t ready yet. I could not have been more excited for Sarah as I followed her progress through her first pregnancy. She eventually gave birth to a beautiful girl named Emma. Sarah and I lost touch for the most part over the next couple of years as we each went in our separate directions. One day, I got an email from Sarah letting me know that Emma had been diagnosed with Leukemia. I just couldn’t imagine what it would be like to have to try to explain to a 2 year old what that meant. I followed Emma’s progress through her treatments by reading Sarah’s blog entries on a wonderful website: caringbridge.com. I recently read a post that moved me immensely. Emma is approaching the end of her treatment. It has been a long road for her and her family, but through it all, Emma has remained a shining example of the resilience children possess. I am honored to run in her name and I asked her mom to write an entry for you all to read. Please take the time to learn a little more about this amazing family and their journey. If you would like more information about Emma and her fight with cancer, check out her Caring Bridge site: http://www.caringbridge.org/visit/emmasteen
To donate to the Pablove Foundation, visit my fundraising site at: http://www.stayclassy.org/fundraise?fcid=205865
On June 28, 2010, I took our 2.5 year old daughter, Emma, to the pediatrician because she had been running a low grade fever for three days with no other symptoms. As we waited in the small room at the doctor’s office, I gently bounced our three month old son, Wyatt, in the Baby Bjorn while trying to keep Emma occupied. The doctor assured me it was probably just a virus, but at the last minute she had Emma’s finger pricked for a Complete Blood Count (CBC). I knew we were in trouble when two doctors came back into the room with the results. Emma’s counts were very concerning, and they instructed me to take her straight to the local emergency room where she would be transported by ambulance to UNC-Chapel Hill.
I handed Wyatt off to a friend en route to the emergency room, and my husband, Phillip, met me there from work. Phillip was scheduled to deploy for six months the following week, and while Emma and I traveled with full lights and sirens for the 80 minute drive to UNC, his chain of command took him off of the deployment. Emma was taken to the pediatric ICU and immediately given blood transfusions. Later that evening, we heard the words that would change our lives forever: “Emma has leukemia.” Specifically, she was diagnosed with pre-B cell Acute Lymphoblastic Leukemia.
The first week in the hospital Emma had surgery to place a portacath (a small medical device placed under the skin allowing easier access to a vein), started chemotherapy, and received a bone marrow biopsy and spinal tap. Unfortunately, Emma contracted a serious staph infection in her hip bone from that first bone marrow biopsy. This resulted in a month long hospital stay so they could administer strong antibiotics and closely monitor the infection. It was an intricate balancing act between fighting the cancer with chemotherapy (which lowered her immune system’s strength to fight off the infection), treating the infection with the intense antibiotics, and trying to ensure her organs didn’t shut down from all of the chemicals in her body. We watched our normally vibrant daughter transform into a downcast kiddo who felt terrible, barely spoke, and couldn’t understand why her parents were letting so many strangers torture her.
These were dark days for our family. We honestly could not have survived it without the mighty support system we were blessed to have around us. Phillip’s unit booked a hotel room close to the hospital so Wyatt and I didn’t have to commute back to our home every night. Friends took turns taking care of Wyatt during the day so I could spend as much time as I could at the hospital with Emma and Phillip. They also took turns a few times a week staying overnight in the hospital with Emma so Phillip could get some much needed rest. Phillip’s unit gave him four months off of work, no questions asked. Love and support poured in from all over the country, from people we know (and some we didn’t!) from all chapters of our lives. There really is nothing like a challenging life event to remind you how amazing your loved ones are.
Emma went through seven months of very intense chemotherapy while we traveled to the UNC clinic once a week. Miraculously, even after her experiences during the first month of treatment, we were able to convince her that going to the hospital is fun. To this day when we tell her we are going up for her clinic appointments, she acts as though we just surprised her with a Disneyworld trip. I think it is mostly because she knows she will get to watch movies all day. We lost track of how many blood transfusions she had and her immune system was nonexistent. Any fever is considered life threatening and is essentially a ticket straight to inpatient for at least a couple of days. Every time we consider taking her into public we have a mental risk/benefit list going because our goal is to avoid inpatient at all costs. After the intense part of treatment, Emma entered the “maintenance phase” where she goes to clinic once a month for infusions, has lower doses of chemotherapy, and more stable immune system levels.
This October, Emma will complete 28 months of chemotherapy. She is now 4.5, has a beautiful head of curls, and is full of life. She has been through more than her fair share, and shown more courage, spunk and tenacity than I think many adults would. Our little girl has been through so much, but we truly believe it will make her an even stronger person as she grows up. We joke that Emma will one day rule the world 🙂 Phillip and I have kicked around a few ideas for how to recognize the end of her treatment. We are hesitant to throw a big party because it just feels premature and a little like we might jinx something. But we wanted to do a couple of things: recognize what Emma has been through and celebrate her courage, involve as many of our loved ones as possible (even those far away), and raise some money for a cause we believe in.
We are recruiting 28 people to run for her, one person to represent each month of treatment. Sarah has graciously offered to run her marathon (go Sarah!) in honor of Emma and raise funds for The Pablove Foundation. Pablove was founded by a couple who lost their six year old son, Pablo, to cancer. The Pablove Foundation’s mission is to fund pediatric cancer research and advances in treatment, educate and empower cancer families, and improve the quality of life for children living with cancer through hospital play, music and arts programs.
Thank you so much for reading Emma’s story. The truth is there are many kids out there in much more serious situations than Emma and we want to help. We are simply trying to pass on all of the love and support we have experienced during this chapter in our lives.