When he was almost four, Jacob was diagnosed with Hydrocephalus and a Hypothalamic Glioma. A tumor–the size of a large walnut–had decided to grow in the most sensitive area of Jacob’s brain. Due to where the tumor is placed, it could not be removed surgically. Also, the natural flow of Cerebrospinal Fluid was completely blocked off, resulting in a very complicated case of Hydrocephalus.
Jacob spent a week in the hospital and had his first two brain surgeries. Two more brain surgeries followed to correct his shunt placement. Then, on November 7th, 2013, Jacob had his most serious surgery to date. The tumor had formed large cysts that were wreaking havoc on his brain and complicating the Hydrocephalus. The surgeons were forced to operate on what they had deemed to be an inoperable brain tumor. After a successful six-hour operation, we were relieved to learn that all of the cysts were removed and a portion of the tumor was able to be removed, as well. Unfortunately, there was damage to Jacob’s brain that may or may not be permanent.
Many complications arose after this surgery. Jacob has suffered memory issues, speech and vision problems, a grand mal seizure, endocrine problems, loss of physical strength, loss of motor skills and the ability to walk. He will require extensive, ongoing rehabilitation. But after 13 surgeries, rounds of chemotherapy, countless blood draws and tests, we are still here and still hopeful. It is all too easy to wane in faith, hope and strength. But then Jacob will break though that fog with a heartwarming smile and a few funny words or a knock-knock joke. We are in awe that, after roughly seven months of what amounts to torture, he can still find that infectious grin. People have mentioned how strong we are as parents of a child that is in this situation. The true strength is in and exudes from Jacob. That is something worth remembering.