What it's like - part two

There is nothing that I can write that can aptly describe this day. Much of it I still remember with frightening clarity, but some parts are mere blurs. I can safely say that it was the longest day of my life. The entire day feels like it was about two weeks long. And with everything that happened then, and all of the emotion that went into it it really does deserve to be much longer than it was.

The day of diagnosis

Madeleine had to fast for four hours before her MRI. That doesn't sound very long, but when you are just four months old it is a very long time. When we checked in for the MRI we had no idea that we would end up being in the hospital for eleven days. We even had an appointment with her pediatrician later that day to discuss the MRI results. Needless to say we didn't make that appointment. I was very nervous about having my baby sedated. There are risks involved with sedation, but probably 99% of the time there is no problem at all. Of course none of this mattered to me at the time. The idea of sedating her had me terrified. We checked into the hospital and after much paperwork we were finally sent to the day surgery waiting area (MRI scans wait there too). It was very early in the morning and there weren't many people around. No one tried to talk to us, which is good because I probably would have burst into tears if I actually had to say words to anyone. Finally one of the MRI transport guys came to get us and we began our long walk to the MRI center. We've taken that walk many times since then, but I will never forget how fragile I felt that first time. It was sort of like walking on air, I couldn't feel my feet touching the ground, and couldn't think of anything other than my concern, fear, and the weight of the baby in my arms.

Once we waited at the MRI center for awhile we were taken into the elevator and down one level to where the MRI machines were. I can vividly recall the elevator doors opening up to the sight of an adult-sized bed with a nurse and a couple of doctors standing on the other side of it. Upon seeing the bed, my first thought was that it was far too big for her and that we shouldn't be here. We were advised to kiss the baby and place her on the bed. The very nice nurse suggested that we leave before they administered the sedation medication because she could see that I was very upset. I'm so glad that we did. I've since seen her be sedated and while it's not so bad now, it would have been terrible to observe that first time. It's nothing like falling asleep. On the elevator ride back up I started sobbing. The poor transfer guy (I'm sure they have a title but I don't know what it is) that escorted us back out tried to explain that hundreds of babies have MRIs and that they never have a problem. I knew this, and it wasn't so much the MRI, or even really the sedation that I was scared of, it was what they might find.

We were told that the scan would take about 30 minutes, maybe an hour if they decided to scan her brain as well, so we decided to walk to the cafeteria to get some coffee. I remember walking around the cafeteria wondering how so many people could be so calm and happy. One of the hospital social workers (although I didn't know who she was at the time) came up to me and asked how she could help. Ryan explained that our daughter was getting an MRI. I felt that he didn't explain it accurately, although no one could, in my mind. It was more than an MRI, we didn't know what was wrong with her, it could be something really bad, she's only four months old. The social worker brought me some napkins and left.

Eventually we returned to the MRI waiting area and waited forever. At some point I deduced that they must be scanning her brain since it was taking so long. You would think this would freak me out more, but it had the opposite effect. I rationalized that if they were scanning her brain that meant that they hadn't found anything in her body that was wrong, and in the end they would find that nothing was wrong with her at all. Of course now I know that they scanned her brain because they had already found a giant tumor and they were checking to see if it had spread to her brain.

Finally Mad was wheeled out (still sedated) and we started to follow the bed to the recovery room. She looked so small curled up in the giant bed. In the hallway we met our pediatrician who had been in the room with the MRI techs to read the scans. We had probably walked about five feet before she said, "They found a large mass in her abdomen." After that I couldn't deny it anymore, I couldn't will this not to be happening. My worst fears were being realized. After discussing the findings a little more while still walking down the hallway (this was weird to be told something so devastating while walking, but she knew she couldn't wait the five minutes it would've taken to get to a consult room), she led us to a private room and talked a little more about how they were 95% sure that it was a neuroblastoma. I don't really remember what else she said. She gave us her cell phone number, hugged us, and walked us to another surgery waiting room where we were to wait for Madeleine to start to wake up in the recovery room. I can't even explain how I felt at that moment. I've started to write five or so different sentences but none of them come close to portraying how vulnerable and devastated I was at the time.

One parent was allowed to go back to the recovery room. I don't even think it was a question, but Ryan knew that I would probably have staged an epic battle in order to be that parent. Madeleine was attached to an IV, as well as having leads for various sensors on her. She had started to wake up and I was allowed to feed her. At one point I looked away from her and when I looked down she had specks of blood all over, and all over me. I was trying not to panic because I knew she had only had an MRI, not a surgery. I think I said something like, "um, blood!" and the nurse came running over. It turns out that she had pulled off a cap on her IV, and then flailed her arm around to make it look like a trauma scene. I was eventually given a pair of scrubs because they didn't want my bloody jeans scaring the other parents. For the rest of the day I was mistaken as a nurse, which has its advantages (discounted food in the cafeteria). After a little while they decided that Ryan could come back too, since it looked like we would be there for awhile.

The neurosurgeon came by and was very, very serious with us. We joke around now that he's our least favorite neurosurgeon because he's so serious all the time. He shadowed us that whole day, administering steroids to see if that would have an effect on the tumor and bring about some movement in her leg, and talking on the phone. We later found out that he was conferring with the head neurosurgeon who was on vacation at the time and was eventually called back for Mad's surgery (Luckily for us he was only in LA). We also met with our Oncologist who came with a social worker. Being introduced to the Oncologist was a little strange. It hadn't really set in yet why we would need her.

All in all we were in the recovery room for 2-3 hours, waiting for a bed to open up in PICU. At first they weren't sure whether they were going to do the neurosurgery that day, or wait until Monday. A Friday evening surgery, neurosurgery at that, wasn't optimal but it eventually outweighed the risk of waiting through the weekend.


This is long enough for now, more to come later...