Well the day finally came and it was time to have the “BIG MEETING” to go over the pathology report. That morning, AJ had to get a EEG done because I thought he was having mild seizures. The meeting was for 11 a.m. and he was still getting the EEG done at that time. I never like to leave his side at the hospital, especially if he is having a test done. My heart has been split in a million one directions since this started and I am always nervous to leave him. I never want to be more than an inch away just in case something happens, or if he just needs his mom at that moment. I finally go upstairs to the meeting.
My father, sister, and his dad are there along with his oncologist and the brain tumor team. The meeting begins. We begin to hear how RARE his tumor is. My body and mind have been numb since this whole ordeal sorted and somehow I have managed to stay level-headed and calm during our meeting.
My goal for this meeting was to find out how we beat it and what happens next. The day before, I found out the name of his tumor. Of course, I Googled it and found out that it’s extremely rare and there is no “good prognosis.” Since it is so rare, no one has good hard research on it. Going into this meeting I was hoping his oncologist would tell me that Google was wrong. Unfortunately, that is not what happened. The name of the tumor is called Choroid Plexus Carcinoma. Which turns out to be a an very aggressive, malignant tumor. The doctor tells us that there have only been a handful of cases that have been studied and the prognosis is not very good. The best course of action is aggressive chemotherapy in hopes that it shrinks this “villain” small enough that the neurosurgeon can go in and do his magic. The meeting of course was lengthy and we asked a million questions and got answers that no one should ever have to hear about their baby! We talked about side effects from radiation and the pros and cons about everything. I heard his doctor say unfortunately his type of cancer/tumor is often called an “orphan” disease! That sentence I think will haunt me for the rest of my life. It is bad enough that he has brain cancer but the fact that there are no clinical studies, medical advancements or research being done makes it even worse.
I have never been the person to just accept something that is not right. So I know with in time I will bring awareness to this “villain.” Maybe one day another parent will not have to hear the words “your child has an orphan disease.”
After the meeting, I had to face AJ with my “Mom smile” on and go on with our new routine. Which includes watching every Spider-Man movie numerous times. We knew they wanted to discharge him. That brought a lot of emotions and questions up. In my head I was thinking, “You just told me he has brain cancer and you want me to take him home and go back to him “normal” routine for only one week? His social worker told me to have him complete a “little bucket list” this week. So that is what I planned on doing…