It all started on Saturday, December 18th, 2011…my husband and I could tell that Emily wasn’t feeling well. She was playing all day and then all of the 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 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 her sisters, Jessie and Brianna. 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 matters and nothing showed the cause of a temperature and the belly pain. So, they did the CT scan and thankfully Emily slept through the whole thing. When the doctor came into the room at 430AM in the morning 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 was not sure what that mass was. Emily was then sent by ambulance to VCU Health Systems and our life forever changed. We had to get someone to watch Brianna and had Jessie go to her dad’s, because my parents wanted to be there with us as the hospital. Doctors upon doctors came into the ER room, it was very early in the morning it was 6AM and no longer were Doug and I exhausted, our exhaustion turned into complete worry about Emily and what it was. After sitting in the ER for what seemed liked forever, Emily was moved to the Floor 7 East at the hospital for pediatric. This floor was strict where anyone entering the floor my 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 worry about Emily. Emily underwent MIBG scans, Whole body bone scan, MRI and she also underwent surgery to see if they could remove the tumor mass and to get a biopsy of it. The surgery was done on 12/23/2010 and I will never forget this day for as long as I live and it will be added into our days of things we remember. Doug and I 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 Doug, Emily and I and Emily 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 have her the anesthesia and Emily fell asleep. Doug and I fell apart in the room, crying. It was the 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 4 hours of surgery was pure agony for Doug and I, it was a long wait. When 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 (2 days before Christmas) Emily was diagnosed with ganglioneuroblastoma,with staging still to be determined based on other scans. The next 5 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 no they can’t eat or drink. The doctors were a little stumped with Emily’s information. They only have 3 cells in her bone marrow aspiration and the MIBG found 4 spots on her legs that were asymmetrical that 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 Ketterling on January 10, where Dr. Modak confirmed Emily was a Stage IV, Neuroblastoma and we would need to start treatments as soon as possible. Emily started her first round of many rounds of chemo treatment on January 18, 2011.
Emily has undergone 4 rounds of chemo so far with many other hospital stays for fever, RSV and fever. 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 2 mores rounds of chemo, another surgery which she will have done at Children’s Hospital of Philadelphia after the 5th round of chemo, two stem cell transplants among everything else.
Please send all of your love, thoughts and support to Emily. She will be 4 on May 30th and really loves your thoughts, and prayers.
Stop by her facebook page, http://www.facebook.com/emilysjourney and leave her a message and if you would like to follow her journey, you can do so on her caringbridge at http://www.caringbridge.org/visit/emilys or on her blog at http://www.emilyhubbel.com
~Lillie's Friend
