The Cutting Edge

by Joan

Matthew, our son, is eight years old. Since the age of four months, he has lived with the left hemisphere of his brain severely damaged. During the past four months he has been subjected to many tests of his brain to determine the source of the frequent seizures he lives with and that aren’t controlled by seizure medications (though several have been tried). A team of 40 (neurologists, neurosurgeons, etc.) from the Children’s Hospital of Philadelphia (CHOP) have been carefully studying his situation and are in 100% agreement that Matthew would be greatly benefited by a major brain surgery called a hemispherotomy. CHOP is on the “cutting edge” of this procedure and in fact has one of the best surgeons who does only this specific surgery. Ron and I and Matthew met with him yesterday morning for a long discussion regarding Matthew specifically. The first thing the doctor did was put the MRI of Matthew’s brain up on a large screen and before he said anything, Matthew piped up, “Well, that is my brain!” Dr. Kennedy responded, “And it is a smart one too, I see!”

Without going into a lot of detail (if you want more, call me sometime), Ron and I have made the decision to move forward with the surgery (it will happen sometime next month). After considering all that we’ve been learning, we believe, hope, and pray that the benefits of subjecting him to this incredibly involved surgery will far outweigh the risks and long-term effects if we do not take this step. It will require “cutting edge” precision to disconnect the dead (or mostly non-productive) side of brain that is firing seizure activity constantly and is negatively affecting the healthy, intact part of the brain. It is an all-day surgery; he will have some deficits he does not have now (temporarily); it is likely he will need as a follow up surgery within a week to address a side-effect and he will be in critical condition for a few days. Recovery and therapy will be in-hospital (at CHOP / Philly) for another 4 to 6 weeks. Those are the downsides / challenges, but the upsides are that following this grueling initial journey, he will be seizure free, medication free, and with intellect, cognition, and memory all very much enhanced long term.

Now is the time to do it because of the “plasticity” of a younger brain. Also, the sooner it is done, the sooner the damaged half of his brain will stop causing interference to his development and hopefully end any threat on his life from epilepsy. It goes without saying, we want your prayer support and as we navigate our way through this. We may tap a few on the shoulders for other support as well. It scares the joy out of my heart as I think about another thing that my son needs to go through. It seems to be my lot in life to cry out, mourn, grieve, sob over the medical conditions of my children, but it also is my privilege to place them in the hands of the Great Physician, walk along beside them, provide comfort, hugs, cheers, and a ton of “atta boys” to help them overcome.  Isaiah 42:16 states my hope in what God is doing. This will become my theme over the next two months. “I will lead the blind… in paths that they have not known, I will guide them. I will turn the darkness before them into light, and the rough places into level ground. These things I do, and I will not forsake them.”  That is my God speaking to our family as we traverse a dark, unknown, rough ground. He will not forsake us as we walk this cutting edge!

Don’t be shocked if I cry a lot. I am sort-of like Mary the mother of Jesus in that I ponder much in my heart and (for me) it comes out my eyes. I am ok – just need to process all my feelings.