How this all began…


Here is a little backdrop to how our whole world just got knocked around…

Aaron had been complaining of double vision for about a month before this “villain” struck. We thought he needed glasses so we continued to bring him back and forth to the opthamologist. This weekend I knew something was wrong when he started complaining of headaches and his left eye appeared to be slightly bulging out. I took him straight to the urgent care clinic at his primary care doctor. The doctor could not pinpoint what she was seeing, but said that she wanted him to be seen by a pediatric ophthalmologist that week. She was going to call Stony Brook hospital Monday to squeeze him in. Of course me being a crazy mom I called myself Monday morning to learn that the specialist could not see him until the end of the week. She assured me that he was OK, but I had this pit in my stomach that this was serious and could not wait. So, I called a doctor associated with Cohen’s Children Medical Center, she cleared her whole morning and wanted to see him ASAP. After dilating his eyes, she took one look at me and said, “How fast can you drive?” Being a volunteer EMT, I knew exactly what that meant. I rushed him right over to the emergency room at Cohen’s Children Medical Center.

After hours of waiting in the ER they finally admitted him. Instantly, residents are asking if they can take a look at AJ, because they never saw this condition in a child so young. I had no clue, what they were talking about but of course I let them and AJ enjoyed flirting with all the residents. Later that night he went in for a CT scan. As I am waiting for the results, a nurse by mistake said, “How are you doing? I know the neurosurgeon came and talked to you.” I guess she knew by my facial expression that no one spoke to me yet. She apologized and I said no need to explain. A neurosurgeon only comes to talk  for one reason and I was smart enough to put it together.

I knew that meant my son had a brain tumor. By this time my son’s severe anxiety had taken over, he was hungry, tired, scared and I was just in shock. I am so grateful for all the Child Life specialists and Social workers who were on that night. They were awesome with AJ, walking him through every little thing that was happening and made sure that I was “O.K.” Finally the neurosurgeon came and showed my dad and I his CT scan.  All I remember is that the very next day, he had surgery to remove the tumor. It all happened so fast, that I do not remember much about those two days. All I remember is that the surgeon warned us that he would most likely end up with weakness on the right side of his body and slurred speech. After waiting six hours, we got word that the surgery was over and that he was stable and awake. The surgeon came out to talk to us,  “Aaron did great. He lost a good amount of blood, the tumor was very large, vascular and aggressive. He did great though and we should have the pathology results either Friday or Monday. Most likely Monday”. I wanted to ask a million more questions, but I could tell his neurosurgeon was tired and to be honest there was not much more to say. We headed up to ICU to wait for him.  After a few minutes, the nurses finally said he is ready for visitors and he is very upset. I rush to his room, thinking I would hear crying and screaming, but nope he was only upset because he was starving!!! I have never been so happy to hear my son complain, he said, “I am starving” with no slur or any problem at all! I than saw him move his right hand and leg. I was finally able to breathe, I knew at that moment that he would be O.K!

I wish I could say that would be the end of his “superhero fighting” days, but this was just the beginning of his biggest battle.

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