Waiting for Monday to talk to the only doctor who would be making the decision about the tumor was making me crazy. Several nurses offered me their opinions of the neurosurgeon which all basically summed him up as a rock star among surgeons. Back then it was just driving me crazy but now I know why no one else ventured any form of diagnosis, prognosis or even an idea of a treatment plan. See brain tumors are confounding little things. Doctors who specialize in them will tell you that typically they aren’t even classified as “benign” or “malignant.” They are graded from Stage 1 to Stage 4 based on how aggressive they are. And… only the neurosurgeon can tell you if they can be operated on or not. Teagan’s wasn’t invading any major structures or components of her brain, but it was sitting “very close” to a major blood vessel. In a 5 year old’s brain I’m not sure what “very close” means but I’m guessing micrometers.
We had a lot of visitors, both friends and family, over the weekend so I had a lot to distract me. Teagan asked me why she had to stay in the hospital and I told her that she had a bump inside her head. “How did it get there?” She asked. “I don’t know.” That was the only thing I could tell her. Because let’s face it if I knew why she had become one of the 36 kids diagnosed daily with cancer or how one of her astrocytes in her brain got it’s DNA scrambled and started a tumor I would be a world-famous researcher with lot’s of fancy letters after my name like PhD. I have since read that when talking to your child about their medical condition its best to be honest and upfront and to use proper terminology and not words like “bump” and “pokey thing” and “finger light.” Oh well….. it’s not like it’s the first time I did something that didn’t coincide with the proper way to raise your children.
Sometimes I think I was walking around in a fog the whole time during the days we were there. Then at night the fog was lifted (both the nights I stayed there and the nights I can home). Mostly I just didn’t sleep. But anyway…. On Sunday we were pretty bored and one of the nurses brought us a wagon and asked if we wanted to take Teagan for a ride. We weren’t supposed to leave the PICU – that would have been a handy instruction to have before we left her room. We took her downstairs, over to the main hospital, to the place she still calls the “fountain room” which is a huge marble fountain with brass wildlife and a nun (maybe 2 nuns) and to the cafeteria. We passed a lady somewhere along the way who had that “I’m-smiling-because-I-feel-sorry-for-you” look and I just smiled back. I didn’t really understand why she would feel sorry for us, she couldn’t know what was wrong. Then about midnight it dawned on me. Teagan was now one of the kids in the little red wagon. When Dawson was 9 months old he was sent to Riley Hospital with a respiratory virus. We had gone to a local ER and the hospital would have been able to take care of him but we had an odd pediatrician back then who made them send us to Riley. That was my first introduction to a children’s hospital – which despite all the bright colors and cute decorations are really sad places when you look at the number of children facing debilitating or incurable diseases. During that brief stay at Riley I learned one thing — I was thankful that my child wasn’t one of the kids in the little red wagons. You see the little red wagons are usually reserved for the really sick kids, like the ones with cancer or ones who have cerebral palsy and cystic fibrosis. It took me until midnight to realize – now I was one of the parents of one of the kids in the little red wagon.
Yeah I’m pretty sure that my light is more like a flickering fluorescent and not a 100 watt incandescent.
Once we finally met the surgeon, Dr Young, I could see why everyone gave him rock star status. I had thought long and hard to have a list of really intelligent questions to ask him. That did not go well. He scheduled us for surgery and explained it was just easier to remove the tumor and then determine what it was rather than use a small probe to do a biopsy and then have to do surgery too. He explained how he would make the incision along her hairline so it wouldn’t be noticeable and he would drill a whole about the size of a nickle into her skull and then remove the tumor. He said the skull would take about 6 months to repair itself and there would be no stitches to remove from the incision. Whatever “intelligent” questions I had thought of (and I think even written down) suddenly didn’t sound so intelligent when I was talking to a man who was going to drill a hole in my daughters skull and dig through her brain to remove a tumor. Luckily the impact of that conversation also didn’t hit me until way later in the day. That same day I also met a very soft spoken young female doctor from the oncology center who spent a long time speaking to us and taking a lot of notes. I didn’t know it then but she would become my “go-to” doctor. The doctor who made me feel better every step of the way. The doctor who had just finished her residency and Teagan would be her first brain tumor patient who would call and say “This is Jessica…uh… Dr Goodman.”
Dr Young may be the rock star but Dr Goodman is the rock. Without both of them this story has a different ending.