About two weeks later I walked in the cramped ICU room after taking a brief moment to run to the bathroom. Peter was talking to someone I had not met yet. She introduced herself and I sat down. I tried to listen to what she was saying, but my brain was stuck on something. . . it was stuck on the word, oncologist. Why did we need an oncologist? My son had a brain tumor, not cancer. I really did try to listen and follow what she was saying. Peter clearly was understanding her and that was even more frustrating. The words were coming out of her mouth, but they made no sense. It was like listening to the teacher on Charlie Brown. Wawawa wawaawwa. And then, again, I lost sense of who took over my voice. I heard myself asking this woman, who clearly was there for good and not bad, to leave immediately. I heard myself saying that my son had a brain tumor and once we were out of the hospital he would be fine. He didn't need her help, the doctors were doing fine here in the ICU. I knew that what I was saying wasn't right. I had been caring for my chronically and often critically ill daughter for 3 years, I had the medical knowledge. I knew that she had information I NEEDED to hear. But, it wasn't time. It wasn't time to admit this was just the beginning of a fight I had no desire to be in.
That night Peter and I ordered a pizza with another couple who had a child in the PICU as well. I went down stairs with this sweet mom to get the pizza. As we entered the elevator, pizza in hand, a mom and her adolescent son entered with us. He was bald, gray and shaking hard. His mom had his pillow in her hand and was rubbing his shoulders, telling him he'd feel better soon. I looked at that child and saw what we were facing. I saw the bald head and the gray skin and all of a sudden the shock, terror and overwhelming fear of what was still yet to come hit me all at once. I knew I was staring at that poor child with disgust on my face and the smell of the pizza must have been just awful for him. I am still riddled with guilt for that initial encounter I had with this child, whom I eventually came to know well. As I exited the elevator, three floors below where the mom and son were headed, I cried and left, giving the pizza to my friend, to go and have my personal pity party.
The next day I faced my demons head on. I asked my friend to join me as I took a "tour" of the pediatric hematology/oncology floor. I was surprised at the brightness of the floor. It was wider than the other pediatric floor. The rooms were open and inviting. A small child with no hair came flying out of a doorway and jumped on the base of an IV pole carrying no less than 4 pumps and far more bags of "stuff". This child was no more than four years old, but clearly was used to this process. As we walked down the hall, holding each other's hands (she had no preparation for this experience either), I looked into each and every room. Cancer does not discriminate. There were cribs for babies and game stations in front of teens. There were preschoolers in the playroom and school age children sitting in the day room doing crafts. I left that floor far more prepared than I had ever imagined, because that floor was filled with kids fighting! They were not lying in bed dying. I needed that visit, and just a week later we finally made it to our new home on 7H where we were welcomed with open arms. I also came to terms with the fact that my son had both, a brain tumor and cancer.