Category: Journal

On Aug. 2nd, 2007 Cristian received an MRI which showed that his tumor was beginning to grow again. Because he had already finished his maximum amount of radiation in the previous months, it wasn’t an option to do it again. Honestly we had little options left. After speaking with Dr. Stephen Gilheeney one his doctor’s from the Neuro-oncology team at Memorial Sloan Kettering.

Cristian has gained so much weight because of the Steroids… He doesn’t want to play with his trains. He just eats and watches some TV and wants to stay in the room with the Curtains drawn.

Cristian was operated today. He had the Medi- Port put in. Cristian was gasping for Air. He didn’t react well to the Anastasia. I couldn’t help my Son. I watched him gasping for air as if he was going to Die…. I couldn’t stop Crying…. This is Hell…….

I went to NYU filled with hope. I meet with Dr’s that were referred to me by close Friends… The Dr’s Say exactly what I was told at MSK….. I feel defeated… I must keep pushing forward…

I woke up today hoping I had a nightmare the past 2 days, and I didn’t. I spent hours and hours calling all the people I know in the Medical Field. I am seeking 2nd opinions. I then saw Cristian. Oh my God… I can NOT imagine losing my Son. This is insane. I can NOT allow this to happen. I must do something.

I am starting a Journal Today- I went to MSK to meet with the Pediatric Neuro-Oncology Team. They confirmed what we were told yesterday. Cristian has Pontine Glioma (DIPG). It is a Brain Stem Tumor. Inoperable… Very little Treatment Options.