April 15...another day we'll never forget

Nathan woke up on Monday, April 15, 2013 at his normal 4:45 a.m. time. Funny how even with me sleeping right next to him in the hospital crib doesn't change his sleeping habits! We snuggled for a bit and watched Alvin & the Chipmunks together. After everyone left the previous night, including Stephen, we were able to get a little rest. He still hadn't eaten much of anything; a few crackers here and there, but that's about it. He was content with just drinking his milk. I wasn't about to force him to eat, that's for sure.

snuggling at 4:45

As the morning crept on and the rest of the hospital woke up, one of the neurosurgeons came in and asked if I wanted to review the MRI with him and we could talk more about the surgery. I had spoken to Dr. Goumnerova, Nathan's neurosurgeon, on Sunday, but hadn't seen the MRI yet. I was nervous to actually see it. There's something about knowing that your son has a tumor in his head and knowing it can't be removed, ever, and then it's something else having to actually see it for yourself. I wasn't prepared for what I saw.

Once a nurse could sit with Nate (at this point, he could not be left alone with the drain coming out of his head), I was able to sit down with the doctor. He pulled up the image and I felt sick to my stomach. The first set of images he showed me was the one that was first taken on April 12, 2013. If you've never seen images of a brain in person, I'll do my best to explain what I saw. His entire brain was filled with cerebral spinal fluid (CSF), to the point where it was almost pushing on his skull. It was heartbreaking to see and tears slowly ran down my face. Our bodies produce approximately one pint of CSF every day, continuously replacing it as it’s absorbed. In Nate's case, it wasn't getting absorbed because it had nowhere to go; the tumor was blocking its path. Hydrocephalus is a life-threatening condition, almost as much as a brain tumor. This could have caused major damage to him and would've potentially killed him if the initial MRI appointment had been any later. Because I had never seen a brain MRI firsthand, I asked him to draw me what a "normal" ventricle is supposed to look like. The difference was staggering. I could not imagine the extent of the headache that our little boy must have had for who knows how long. Our poor baby. (we still have yet to look at that MRI again)

The surgeon continued to explain that they would drill a hole through his third ventricle which would allow for the CSF to travel out of the brain and be absorbed by the body. Because his tumor would always be there to block it, the CSF needed a new path out. He also told me that they would attempt a biopsy if possible. If it was too dangerous because of the tumor's location, they wouldn't go near it. Then, what he said next made me lose it. I had been pretty strong up until that point. I was in "Mama Bear" mode, doing whatever I needed to do to keep Nate calm and happy; I hadn't cried much and was still basically in shock. He told me that once the surgery was done, Nate would start chemotherapy, possibly radiation. WHAT??? We were told on Saturday afternoon that he wouldn't need treatment right away, if even ever! That this surgery was supposedly the "cure" for this type of tumor. I LOST IT. The doctor was a little surprised at my reaction and wasn't sure what to do next. He put his hand on my shoulder and told me it was going to be okay. That was nice of him, but seriously?? We were told one thing on Saturday and now, it felt like we were being told the exact opposite. I didn't even know what to feel. I explained to him what we were told on Saturday and he attempted to backtrack, but it didn't work. It was too late and I was already beyond upset.

Once back in the room, I snuggled up to Nate for a little bit and just cried as quietly as I could. How could our lives change so quickly in a matter of days? How did we get here? Once I was able to compose myself, I called Stephen. Through sobs, I told him what the doctor told me. He was beside himself. It was so hard for us to be apart; I know he felt bad for not being there and I felt bad to having to tell him this news over the phone.

A little while later, a nurse came in and told me that I could take Nate out of bed, if I wanted to. Really? She didn't have to ask me twice!! She helped me take him out of the bed and I was able to sit with him on a chair. It was so nice to have him out of the bed and hug him. I quickly Face-timed Stephen to show him. The both of us cried together on the phone. Nate had no idea what was going on; he was probably thinking, "What the heck is going on with these 2?" All he knew is that he didn't have a headache anymore. The drain was doing it's job by taking all the fluid out. Watching that bag fill up with fluid was more than enough to make anyone sick. And knowing that simply making Nate upset creates an increased flow of CSF out of that drain is enough to make any mother bow down to their child just so they don't get upset. Oh, the things you learn.

Out of bed!!

We had a surprise visitor come in: Mother Olga. This woman was just amazing. She brought this calmness with her that would make even the non-believers out there feel good. She saw that I was upset and just hugged me. She gave the best hugs. I put Nate back in bed and we just talked for a few minutes. She only stayed for a short time so we could get some rest. Once Nate fell asleep, I left quietly so I could get a snack and something to drink. As I walked down the hallway, it was eerily quiet. All of the nurses were huddled around a television. 

I wondered what was going on, but continued on my way to get something to eat. When I returned to my room, I had missed several text messages and a phone call. I started to look through them and they all were just asking if we were okay. I didn't think much about it because of our current situation. I switched off Alvin & the Chipmunks and couldn't believe what I saw. No wonder why everyone had been texting and calling. There was a bombing at the finish line of the Boston Marathon! Oh my! No wonder why all of the nurses were huddled around the television. But, I give credit to the entire staff there. They didn't miss a beat and were attentive as usual. We had no idea what was going on less than a mile down the road. 

I finally got a chance to talk to Stephen on the phone and we were both thinking that he wasn't going to be able to get back into Boston in time for the surgery. All roads into the city were temporarily closed and it looked as though Nate and I were going to be in this alone. My phone was lighting up every few minutes and Facebook messages continued to pour in. It was incredible that so many people were checking in on us. What a way to make a person feel loved. We needed that.

After several conversations with the nurses (we were told that only emergency hospital staff were being let in the hospital due to the severity of all of the injuries) and Stephen's phone call to the Brookline police, it looked as though he was going to have to wait until the morning to try to get back into Boston. Nathan's surgery was scheduled for first thing in the morning. Ahh...another sleepless night.