When It All Started
On the summer of 2004 my family and I were very busy getting ready for my brothers wedding and I had a special job to make most of the arrangements together with the bride. Unfortunately being busy running around (we had two parties on the same day-Albanian party and American one). I didn't pay much attention to my daughters declining health-I thought that she is not eating enough because she missed me a lot. She started to cry more often and complaining of being tired and wanted me to carry her on my arms. Because she has always been attached to me we thought that she is looking for attention when I wasn't busy with the wedding thing. One month after the wedding her condition was getting worse she was getting more pale and more and more wanted to be picked up. Cancer never crossed my mind because when she was feeling better she continued to to cartwheels and loved roller coasters. She is a daredevil. Two weeks before the diagnosis we went to Bromley Mtn., Vermont and she loved the Alpine Slide she couldn't have enough. Couple of days later we noticed her belly had gotten big but we didn't pay much attention, I thought she might be constipated and also in my country say that kids with big belly grow taller and since I'm short my family joked around that Aurora will outgrow me. Everything changed on the early hours of Oct. 6th. when she woke up screaming. Since she wasn't feeling any better by the afternoon I took her to the ER. They run some tests there and felt her belly and immediately asked for a CT Scan. I got really worried but they tried to calm me down saying it's just routine. After couple of hours of waiting in the Danbury ER the doctor notified me that they are transferring us to a bigger hospital because they have children specialists there who can run some more tests and get a final result. Since I had gone to the ER by myself and my husband was working I called my mom to come pick up my car and told her what was going on but still hoping it's something like an infection-cancer never crossed my mind. By the time an Ambulance came from Yale for us everyone had joined us in the ER, my husband, my dad, my sister, her husband and deep down everyone was scared and panicking not knowing what's going on and why all this rush to be admitted. I rode with my daughter in the ambulance because she was screaming all the time from fear of what was happening. I tried to get some info from the DR. in the ambulance but she said not to worry. When we arrived at Yale it was about 10 pm and the room was ready and the nurses started in a hurry doing all this things to my little girl. I tried to calm her down but I was more scared than her. I wanted to figure it out why we are on the oncology floor, but since I overheard the DR. at the ambulance arguing on the phone about a room I thought that there weren't any room in other units. The next day first thing in the morning Aurora had a CT again and later on I was approached by her doctor who wanted to talk to me in private. As soon as I heard the word private my heart sank I sensed the bad news but didn't guess it was the worst. When the word cancer came out of the doctors mouth I got lost, I started crying and shaking thinking how could this be -she is only a child, why her why not me, I became lost and when my dad came into the room he started crying before hearing what was going on. The same day was the biopsy and a broviac was inserted into her chest and by that time in the evening there were like forty people in the waiting area trying to help me, telling me I need to be strong and think about her and my other two daughters. Easy said that done. Aurora was in a very bad shape, she started bleeding too and I still can't remember well the first five weeks. I blamed myself for not taking her earlier to a doctor and for no reason at all or for just why not me, why her. Doctors were coming in and out the room all the time and every time she would see them she was screaming of not knowing what they'll do next. It took her more than a month to let the nurses touch her without screaming and yelling on them. Family and friends started pouring in but since Aurora was so scared and didn't want anyone we had to ask everyone not to come but just to call in. After the first chemo Aurora had a seizure, that night was the worst of all because I had never seen one before and I thought that I am losing her, I called my husband and since my mom was staying with me at the hospital we told my dad to prepare for the worst, I don't remember what happened in details because I lost it but I remember the doctor telling me that there was no sign of bleeding of the scans and she will get better and that she will spend some days in the PICU. After five weeks and getting little better we were send home with NG feeds but not tolerating them. All winter last year we spend it in and out the hospital. After 6 chemos, 8 and a half hour surgery, and Stem Cell Transplant Aurora is now doing Antibody at Sloan-Kettering in New York and in between she is doing radiation on her shoulder and pelvic bones where the MIBG still shows some area of disease.