It all started on Saturday, December 18, 2010. My husband and I could tell that Emily wasn’t feeling well. She was playing all day and then all of a sudden she had no energy and was complaining of stomach pain, and had a mild temperature. We gave her Tylenol and ran around the house doing things and about an hour and a half later Emily still had a very high temperature and complaining her stomach hurt. It was late, so we called my mom and she headed to the house to stay with the other two girls while we went to the ER. The hospital wanted to do a CT scan because they thought she had appendicitis and wanted to check for that. We were very worried about the radiation from the CT scan affecting her, and wanted them to try any other route to see if she had the flu, strep throat or anything else. So they exhausted all the alternatives, and nothing showed the cause of the temperature and the belly pain. They did the CT scan and thankfully Emily slept through the whole thing. When the doctor came into the room at 4:30AM and pulled a chair by the bed to sit with a grim look at her face, we knew something was wrong. This is when our nightmare began. They found a mass and were not sure what that mass was. Emily was then sent by ambulance to VCU Health Systems and our lives forever changed. We had to get someone to watch the girls, because my parents wanted to be there with us as the hospital. Doctors upon doctors came into the ER room. It was 6AM and we were no longer exhausted. Our exhaustion turned into complete worry about Emily and what may be wrong. After sitting in the ER for what seemed liked forever, Emily was moved to Floor 7 East at the hospital for pediatrics. This floor was strict and anyone entering the floor must show their ID, and parents must allow them to come in. This was very stressful on us all. I still had to work as much as I could, but also worry about Emily. Emily underwent MIBG scans, a whole body bone scan, MRI and she also underwent surgery to see if they could remove the tumor and to get a biopsy of it. The surgery was done on December 23, 2010 and I will never forget this day for as long as I live. It will be added into our days of things we remember.
 
We were beyond scared out of our minds, worried of the “what ifs.” Worried about how her body would handle it. Before going in she was happy and fine and could eat. I remember sitting in the room with Emily and she was scared. I was holding her and she wanted me to sing to her. I was singing, “You are my sunshine, my only sunshine, you make me happy when skies are gray, you’ll never know dear how much I love you, so please don’t take my sunshine away.” She didn’t want me to stop and she just stared at me as I was singing it to her. They gave her the anesthesia and Emily fell asleep. We fell apart in the room, crying. It was so horrible to let her go, and I almost didn’t. I remember telling them, “please take care of my little girl and bring her back to us.” The four hours of surgery was pure agony for us, it was a long wait. Dr. Bagwell came out and gave us the news that it looked like ganglioneuroblastoma, and that she was doing great. Doug and I couldn’t wait until she came out. On this day (two days before Christmas) Emily was diagnosed with ganglioneuroblastoma, with staging still to be determined based on other scans.
 
The next five days were long, because Emily couldn’t eat or drink anything, and this was really hard because she just wanted water and a donut. How can you tell a child that they can’t eat or drink? The doctors were a little stumped with Emily’s information. They only have three cells in her bone marrow aspiration, and the MIBG found four spots on her legs that were asymmetrical, which confused them very much. They were pretty sure it was stage IV neuroblastoma and talked about the treatments she would need to endure. But off of their confusion, we wanted a second opinion. We made a trip to Sloan Kettering on January 10, 2011 where Dr. Modak confirmed Emily was stage IV neuroblastoma, and we would need to start treatments as soon as possible. Emily started her first round of many rounds of chemotherapy treatment on January 18, 2011.
 
Through a 3rd opinion at The Children's Hospital of Philadelphia, we learned that Emily had neuroblastoma differential.  Not much different than ganglioneuroblastoma.
 
Emily has undergone six rounds of chemo so far, with many other hospital stays for fever and RSV. This has been really hard on us watching Emily undergo treatment, that as she goes further it continues to be harder and harder on her body. She still has two stem cell transplants among everything else.
 
Please send all of your love, thoughts and support to Emily. She turned 4 on May 30th and really loves your thoughts, and prayers.
 
Follow Emily’s updates: Facebook – www.facebook.com/emilysjourney, www.caringbridge.org/visit/emilys or on her blog at http://www.emilyhubbel.com.
 
Written by Shannon Hubbel, Emily’s Mom
June 2011