There was a mom that I met at NYU Medical Center. Her daughter was older than Jacob, but had a similar tumor type. Her child's initial presentation was worse than his because not only did she have a tumor in her brain, but she also had metastasis in the cerebral spinal fluid. Also, the neurosurgeon was not able to remove the entire tumor.
I always knew when her daughter was in-patient at the same time as Jacob because I could hear her raucous laughter from down the hall. I could also hear her speaking loudly about Jesus. She had a really strong faith.
She knew that the doctors were working really hard to cure her daughter of cancer. Like me, she loved the medical team and of all the nurses at NYU. But Jesus was also doing a lot of the work. He was going to make sure everything turned out okay. Besides this, she had a natural glass-half-full personality.
Her optimism was contagious.
When kids are in the hospital for chemotherapy, there is a lot of down time. There is a great deal of waiting around. The mom and I would hang out together during these times.
Both of us were keen observers of other people. So one day during some down time, we worked out a little system together based on previous experience we'd both had at NYU.
At any given time, a doctor might give you some sort of news about your child. Some of the news was huge and life changing, some of it small and of little consequence in the scheme of things. Some of it was sort of in between.
You could tell what type of news you were about to receive by the way that the doctor behaved and how many people were involved.
If a doctor came to see you on their own, the news was probably good. If it wasn't good, at least it was news that wasn't really bad. At the very worst it would be news you were accustomed to by now.
If two doctors came to deliver news you should be concerned. It was an unspoken rule among the doctors that if they had some sort of negative news to deliver they didn't want to do it alone. We could see them in our mind's eye negotiating with other doctors. I'm not going in there alone! If I'm going to tell her, you're coming with me!
If your doctor had many young looking doctors with them, interns or residents or whatever they were, you should not draw any negative conclusions at all. It was probably okay. They were doing rounds with their boss, the experienced doctor. Unfortunately, even when they were doing well, our children were interesting cases.
The only thing you should watch out for is if any of them to try a procedure out on your child. In our experience, these people were long on brains and short on technique. Sometimes they were short on both brains and technique. Even though this was a teaching hospital, you should insist on the nurse. The nurses knew what they were doing.
There was one scenario you did not want to see. That is a doctor accompanied by a social worker.
If your doctor came to see you with a social worker, then the news would likely be very bad. If that doctor thought you might need some sort of mental health intervention during or after the conversation, things weren't looking good. If the doctor thought he needed the social worker and not just another doctor, then you might even need some sort of outside support services that only a social worker knew how to arrange.
Excuse my language. You were fucked.
One day the mom sees me at NYU. Guess what? She says. I listen.
Dr. Sapp came to see me. He had the social worker with him.
Oh no. I say.
Listen to this, she says. My kid had her spinal tap a few days ago. They were checking to see how much cancer was in the cerebrospinal fluid after two rounds of chemo. At the meeting today, Dr. Sapp told me that the CSF was positive for cancer cells. They're going to have to add another drug to her protocol.
The mom continued. So then I figure he has more news, so I pointed to the social worker and said, What's she doing here? Then Dr. Sapp said I thought you might need some support after hearing this news.
The mom got really impatient at that point. Listen, she said. I already knew that the fluid was going to be positive. When you did the goddamned spinal tap, you said it looked like maple syrup. So I already knew there were cancer cells in there two days ago!
The social worker was unceremoniously dismissed. Apparently, they could take this extra support and shove it.
This post was adapted from a series of pieces I wrote in observance of Childhood Cancer Awareness Month last September.