Monday January 16th- Surgery

You know your diagnosis is not good when the medical staff you tell cries. While being prepped for surgery the anethesiologist asked what his specific diagnosis was. I responded, "Pontine Glioma." She immediately started to cry and began to tell me how sorry she was. I seriously want to throw up. All. Day. Long. I go from crying to melting down then back to crying. UNLESS Atticus is near. Then Heavenly Father gives me strength to shut it off and fast. There are things that I am already starting to miss, like his sweet smile (he still can't move the right side of his face well). Atticus has a Diffuse Intrinsic Pontine Glioma (DIPG). Its a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies. The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly. (Source: St Jude Childrens Research Hospital). So there you have it. The combination of 4-6 weeks of radiation, chemotherapy, and steroids will hopefully buy us a short amount of time. Is is not just the craziest thing? I know it hasn't really hit me. This is not my life. No way does my child have cancer. I keep telling Eric that, "I don't want to do this." But I know I don't have a choice. But what I do have control over is how I handle if for Atticus. And I'll be danged if Im not the strongest momma in the world for him. I can and will be strong for him. Then in the privacy of my husbands arms, loving family and friends and can break down. Im taking it one day at a time. Surgery went well. Nothing exciting. He did great, but no surprise there. Waking up from sedation was a little rough and he's tender but other than that, good as gold. The port is under his left breast, and is not nearly as big as I had in-visioned so that's good. We met with Dr. Lanarsky (oncologist) to tie up loose ends and discuss questions we had and our discharge, which will be tomorrow (tuesday). He is an amazing Doctor. He brought Atticus a pack of Hot Wheels race cars right after we found out. We meet with Dr. Munoz (Radiologist) on Thursday where Atticus will be measured, have an MRI and CT scan, and get oriented to our new "home away from home." The process is much more intricate than we thought. He will have a special mask made to keep his head in a locked position. Thankfully he will be sedated BEFORE that happens. We are anxious to get home and figure out a new routine. Thanks again for all of your encouraging works. It really means so much to me. Last night I couldn't sleep and gave up trying around midnight and re-read all of your comments over and over until 3 am. It was the only thing that kept me from breaking down. Love to you all. Love, Cindy