Life in Limbo

When my son was 7 years old, he began complaining of headaches. They were frequent, but never seemed severe. “I have a headache!” was always followed by “Can I watch TV?” I didn’t believe the pain was real until it woke him up in the middle of the night. I knew then that something must be wrong. I approached our pediatrician, who said it sounded like migraines, but we should order an MRI to rule anything out. The appointment was scheduled several months in advance, and I always had the urge to cancel it. I was pretty sure my son just wanted to watch TV. The pediatrician told me I might as well do the MRI. He told me that if we skipped it and something was wrong, I would never be able to live with the regret. We kept the Monday morning appointment, and went to the MRI expecting reassurance that nothing was wrong. Instead, we got a phone call later that day. They needed to see us on immediately, but wouldn’t tell me why. Of course, I knew something was wrong. “Is it a tumor?” I asked. “This isn’t something we can discuss on the phone” was the answer I got. An appointment was scheduled for Wednesday. Two days might be “immediately” to medical professionals, but to a parent who just heard that her child had an abnormal MRI, it was an eternity. I planned my son’s funeral in those two days.

Our meeting with the Neurologist began with reviewing the MRI. “See this spot here? It shouldn’t be there”. A tumor. 1 ½ × 1 ½ × 2 ½ cm tumor, in the right thalamus. Small, they said. Looks like a Low Grade Glioma they said. The kind of tumor you want to have, if you have to have a brain tumor. A biopsy was scheduled for two weeks later. The biopsy confirmed it was a Juvenile Pilocytic Astrocytoma (JPA). The neurosurgeon was confident she could remove all of the tumor. We were at one of the best Children’s Hospitals in the world. We were in good hands.

A few days before the surgery, a friend who is a medical doctor suggested we get a second opinion. “It couldn’t hurt, it could help”, my husband said. Fortunately, he just sold a start–up company, and was planning to take a few months off from work before starting his next venture. He had time to research, talk to friends in the medical field and make phone calls.

Our second opinion from another leading hospital reviewed the MRI’s with us. The neurosurgeon asked, “Did they say tumor? One?” Yes, they did. “See this here?” he said, pointing to a second spot on the MRI. He said it was possibly a second tumor, or more likely, an extension of the first. It was in inoperable location. Surgery wasn’t an option. Chemo would be our best choice. Why would we cut into our son’s brain to remove part of the tumor when he would need to do chemo anyway? Why not try chemo first?

I would like to say that we do not fault our original neuro–oncology team for missing this second abnormality. It is hard to notice an ant in the room when there is an elephant staring at you. People make mistakes, and tumors don’t always look the same. That’s what second opinions are for. That is why doctors should encourage patients to get second opinions.

We scheduled the surgery for port implantation, and got busy educating ourselves about chemo regimes. It was going to be a long journey. 18 months of transfusions with a pretty low success rate and a high rate of secondary complications. Unsure if we were doing the right thing, we got a third opinion. I am so grateful that my husband was between jobs and had time to devote to finding the best possible treatment for our son. We were financially stable and had great insurance. What do people do when they don’t have this luxury?

By now, several months had passed since our first MRI. Our...