Friday, April 23

The next morning, Bill went home to be with our daughter and get her on the school bus. I was sitting next to Collin's crib in the PICU holding him when the neurosurgeon made his rounds. I asked him if he had been able to look at the pictures of Collin's spine. He told me there were some areas of contrast at the base of his spine, which meant the cancer had spread. I felt like I couldn't breathe. I called Bill and told him the news. After getting our daughter on the bus, he came back to the hospital.


We stayed by Collin's side all day. We expected the surgery to take place around two in the afternoon. As the day went on, Collin became more and more agitated and harder and harder to comfort. I wasn't allowed to nurse him because his stomach had to be empty for the anesthesia. By that time he hadn't had anything in his stomach for over twenty four hours since he had been vomiting all day Thursday, and nursing him practically around the clock was the only thing that had brought him any comfort for the last few weeks at home. It was horrible not to be able to soothe him at all. Then the start of his surgery kept being pushed back later and later because the neurosurgeries before his went longer than expected. At some point that day my parents arrived from Houston, and Bill's parents were there with us as well. Our oncologist came by to meet with us that afternoon. She told us that about three weeks after the removal of the tumor Collin would be put on an aggressive course of chemotherapy that would take place over the next six months. I just kept thinking to myself, "I can't believe my baby has cancer." She explained that they felt the tumor would turn out to be one of two kinds of cancer, one of which responds better to chemo than the other, but they wouldn't know for sure until the pathology report came back, which wouldn't be until Tuesday of the following week...my birthday.

Collin had a longer tail of hair on the back of his head that Bill always teasingly threatened to cut off. I realized that the back of his head would be shaved for the surgery, so the nurse helped me cut the lock of hair and wrapped in silk tape so I could keep it. That was Collin's first haircut. Finally, we got word that it was time for Collin to go to the OR for his surgery. Bill and I, along with my parents, walked alongside the crib as they took Collin down to the second floor. We walked with him as far as they'd let us, but then it was time to let him go. I kissed him all over his face and told him I loved him; then I watched as they carried him down the hall, crying and reaching his hand back to me. When the door closed and I couldn't see him anymore, I fell apart.

We were the only people in the surgical waiting area that night. The surgical information board said Collin went into the OR at 6:48 pm. At around 10:15 pm the waiting area phone rang, and they said that Collin was fine and the neurosurgeon would be up within an hour to talk to us. We expected the surgery to take longer, so we hoped that the shorter surgery was a good sign. The neurosurgeon came to the waiting area a little while later, and told us that he had been able to get the entire tumor out, and he had no reason to believe that Collin would suffer any long term neurological damage as a result of the surgery. He didn't feel Collin needed an EVD or shunt at that point. He also told us that out of the two tumors they expected it to be, the pathologist seemed fairly certain that it was Medulloblastoma, the one that would respond better to chemo, but of course they wouldn't know for sure until the biopsy results were back on April 27. But, the news made us feel a tiny bit better about the spread to spine. The tumor was the size of a small purple plum; the fact that it was so aggressive, coupled with Collin's very young age, increase the...seriousness of it, because he's too young to have radiation. I asked if Collin was born with it, but the neurosurgeon said it had probably only been there for three to six months. We asked how many of these tumors he sees a year, he said about twenty, but only two or three of those are in kids under the age of three. Ironically, Collin's tumor resection was the second one in a young child that day. When he was done talking with us, he gave me a little bag with the rest of the hair they had shaved off the back of Collin's head.

We returned to the PICU to wait for Collin. When we saw him, his face was all swollen, and his head was wrapped in gauze. He was groggy from the anesthesia, and would be that way for a while, so the nurse encouraged Bill and I to go to the family waiting room and try to get a few hours of sleep; even though I didn't want to leave Collin's side, we were beyond exhausted, so we went to take a nap. The family waiting room is a room with about eight couches, and parents of children in the PICU and NICU can sleep there at night. I very quickly fell asleep. But at around 4:00 am, I was awakened by the sound of a male voice talking on the phone, and as I heard what he was saying and realized what was going on, I felt sick and panicky. I was trying my best to stay positive for Collin, but the baby that had been in the crib next to him, the baby that I had been watching the night before as I sat by Collin's crib as he slept, had just passed away. I ran to be by Collin's side, and cried. The thing I now feared most had just happened to the baby in the next bed. The nurse tried to comfort me, but I was so scared, and I just wanted to be home and wake up from the nightmare that was now my life.