My New Reality

My first recollection after waking up from surgery was the mammoth size of the room. I was in a room with at least eight other beds. I was aware of the amount of bandages covering my head, and the fact that I felt a lot of pain and very sick. There were nurses all around me who were all trying to help me feel more comfortable, but nothing seemed to help. My mom and aunt were near my bed, but unable to get close because of all the activity. I slowly fell back asleep and have no more memories until the next day when I woke up and found Mom sitting by my bed, holding my hand and telling me what a great job I had done. She explained how well the surgery had gone and how the only thing I had to think about now was getting better. I thought Dr. Reese must have taken care of the white dot, and I would be able to go home as soon as I felt stronger. I knew I could do that!

Can you imagine how I felt a few days later when Mom and Dr. Reese put into plain words the fact that my eye had to be removed because of the size of dot? This was followed by the fact that there was also a white dot in my other eye that would need to be treated before it could grow any larger. As I was listening to all this information, I felt like I was floating in outer space while watching a sad movie about some other girl's life. I didn't understand the seriousness of how this was about to impact my life, but I did know that I could run away and go someplace they couldn't find me. Isn't that how any typical seven year old reacts when told something he/she doesn't want to hear? I guess I was experiencing being a typical child for possibly the last time, before entering a very real fight for my life.

After an extended stay in the hospital, I was finally released to go back to the apartment where we would be staying for the remainder of the treatments I would be receiving. Good-bye to the Barbizon with air conditioned comfort and doormen, and hello to what was the predecessor to the Ronald MacDonald House, without any of the amenities. We were on the fifth floor above the hustle, bustle and noise of New York City. There were two bedrooms, one tiny bathroom, a small living room and kitchenette for two families to share. We liked the family that was sharing the space with us. Their infant daughter also had retinablastoma and had undergone surgery, and was also about to undergo treatment. This meant we all had a long stay ahead of us, away from family and friends. We bonded immediately.

The scorching summer heat of New York was our only true discomfort. With no air conditioning or fans and an almost eight month pregnant mom, we did our best to keep her as comfortable as possible. At night we would wrap her neck with a frigid towel, and many of our days were spent at the hospital. I received two types of treatment, one being radiation and the other was called TEM, that being a precursor to chemotherapy. I never could remember what the acronym stood for, but many years later Mom told me that TEM was mustard gas. Finding that out helped explain why I would get so violently ill each time I would receive a treatment.
During these many weeks in New York, I had a chance to begin comprehending my new reality!