Tillery has cancer but has spent more time in the hospital on the neurosurgery floor than on the oncology floor. Where oncology follows Tillery more day-to-day, neurosurgery has been with us during the hardest times.
There are 4 pediatric neurosurgeons at Cincinnati Children’s and 3 of them have done brain surgery on Tillery. Dr. Mangano saved Tillery’s life when she had her brain bleed and had to go into emergency surgery in the middle of the night. Dr. Stevenson was on call on the afternoon when Tillery’s EVD drain tubing fell out of her head last Fall and she had to have emergency surgery to replace it before pressure built up in her head. But her lead surgeon, the one who we feel the most comfortable with, is Dr. Vadivelu, or Dr. V for short.
Dr. Vadivelu met us the first night in the emergency room with Dr. Fouladi. He then took Tillery to the operating room for the majority of the next day. After that surgery, we met him in a consult room and he said some of the scariest things I have heard in my entire life but did it in such a way that we felt oddly comforted. Over the next few weeks, we saw Dr. V many times late at night and we would always joke with him, asking if he ever went home or slept. I’ll always remember the day he told us about his own son who is the same age as Tillery and he said that when he sees her he thinks of his child. A few months back, I had the opportunity to meet that son as well as Mrs. V and their other kids when they were at the hospital to visit him (on a Saturday night and he was at work!). I told his wife, “Your husband has saved my daughter’s life.”.
In addition to the neurosurgeons, there is a slew of nurse practitioners who we see regularly. They are the ones that make the rounds daily in the hospital. They always round early so they have woken me up more times than I should admit to. It’s a group of ladies and I’ll be honest, I get all their names confused. Instead, when I talk about them, I describe them. “The brunette with the ponytail.” “The blonde who always looks mad.” (There are actually two mad blondes.) and then one day I described one as “The hot one.” In my defense, I ran out of descriptors and if you saw her you’d probably think it, too. Joe always laughs about that now and when we talk about any of the NP’s he always asks, “Is it the hot one?”
Truthfully, the nurse practitioners have seen me at my absolute worst. I’ve yelled at them. I’ve complained to them. I’ve blamed them for things. I’ve questioned things they have told me. Remember, these people come by really early, shining flashlights in Tillery’s eyes, and have often been the ones tasked with giving me news like, “we have to do bedside stitches…again” or “we are going to have to take her to the OR immediately”. When we were in the hospital for 10 weeks in the Fall, I saw these women daily and we started to slowly form friendly bonds. A month ago, when we were at the hospital, we ran into the ladies in the hospital corridor and they all had big smiles as we met up. They were thrilled to see Tillery walking but admitted that at first they didn’t recognize me. I want to say it was because I had had a haircut but in truth, I think it’s because I wasn’t in my pjs!
I don't have any pictures of our neurosurgery team so instead, today I give you a video of what they gave us. This is Tillery eating a grilled cheese, 24 hours after her first brain surgery. We had no idea what the next day would bring. What it brought was our child, alive, improving, eating.
Link to the video: https://www.facebook.com/alanasphillips5/videos/10152458220368178/