Note from Mom

As a parent, you prepare your children for many life events. There is no way to prepare a child for brain cancer. From the first day that Noah was diagnosed with this horrible serial killer of innocent children, I have watched, observed and listened to its other victims and their families. I have studied the unbelievable holes in treatment, care and especially research for these children. It is obscene.

On October 29th 2009, my son Noah and I were making breakfast and suddenly, threw up in the middle of the kitchen. He said, “Mom, can I still eat breakfast?” I thought to myself – he’s back in school and must have picked up a virus. The next day, it happened again, but this time with a headache. Off to the pediatrician.

She thought the same…back in school. But something wasn’t right and I couldn’t shake the “headache” part. She said that if I wanted to have it checked out, we could have an MRI done at our local children’s hospital. I called immediately because Halloween was in 2 days, then the Holidays … we should try and get this out of the way. They had an appointment in November, December and in January. I asked “nothing before?” She put me on hold. Seven minutes later, she came back and said “do you want to come in at 8:30 tonight?” I said “You do MRI’s on children at 8:30 at night?” She replied “Tonight we do.” “We will be there.”

MRI at 8:30 pm, surrounded by Clergy at 11pm and our lives traumatized by midnight. When they told us that they saw a tumor on his MRI and that he needed to have surgery immediately. “Do you biopsy it?” I asked. The neurosurgeon looked at me as if I had three heads. He said “It’s cancer, there is no need.” As I picked my heart up off the floor, brain surgery was scheduled for 7 am. From there, most of my questions were answered with the same look as the surgeons. “What do we do?” I asked. They brought me many different studies and protocols and told me that I could “choose one.” I felt as if everyone was saying “This happened to your son and we are sorry, but now he becomes a study and maybe he can help children 20 years down the road.”

THIS IS UNACCEPTABLE. I had one patient and I was his advocate. I was not going to let my son be “rubber stamped” on the assemble line. I wanted something different. There had to be something or someone on this planet that knew of something different. These children are not lab rats nor are they disposable. I will not stop until changes are made.

I know that I was chosen for a reason. By the Grace of God, we are strong enough to fight with Noah and for all families and their children. That was my responsibility as his mother. Now, that is my responsibility to all children battling this horrible disease.

Thank you for your support and let’s change the world of pediatric cancer. The loss of one more child is too many!