By the time Jessie was officially diagnosed with Rasmussen's Encephalitis at Cook Children's Hospital in Fort Worth, Texas, we had already started preparing our selves for that diagnosis. Kristi and I had been reading as much as we could about the disease, and we knew that hemispherectomy surgery (removal of one-half of the brain hemisphere) was the only permanent treatment.
As we read in disbelief, that a surgery like this was still performed in the 21st century, we began narrowing down our choice of hospitals for Jessie's surgery. There were basically three choices; UCLA Medical Center, Cleveland Clinic, and Johns Hopkins in Baltimore. These were considered the three top hemispherectomy hospitals in the world. We also, through our research, were beginning to realize that Dr. Eileen Vining of Johns Hopkins was the leading expert on Rasmussen's Encephalitis.
So we decided that it would be best to go to Johns Hopkins and see Dr. Vining for a diagnosis confirmation, and then we could decide on the surgery later. We were very blessed that Dr. Vining was able to see us. She has seen more cases of Rasmussen's than anyone else in the nation, most likely the world. She knew, before we got there, by reviewing the EEGs, MRIs, and PETs, that Jessie had Rasmussen's. The examination was just a formality.
When Kristi went to mail Jessie's hundreds of images, documents, reports, etc. from Cooks, she went to Fed Ex. The man taking her package saw that it was going to Johns Hopkins and asked if the documents she was sending was for the little girl in the picture and if she was her kid. "Do you know who Dr. Ben Carson is?" Kristi said yes, that he was the head of Pediatric Neurosurgery at Hopkins. Then he told her more about Dr. Carson, the books he has written and that if he was involved, all will be well. On the way home, Kristi couldn't help feeling that Johns Hopkins was the right choice, and that if Dr. Carson was the Director of the department, then we would surely get a good surgeon for Jessie. Kristi told me about the day, and I agreed. That night we bought two of Dr. Carson's books; "Think Big", and "Take the Risk".
On the flights from and to Baltimore, we read those two books, and we became more and more convinced that Johns Hopkins was the place that we needed to be. We realized that Dr. Carson would not be doing Jessie's surgery, but we were convinced that any surgeon working under him would be an outstanding surgeon and give Jessie the best chance. We also knew that Dr. Carson's experience with hemispherectomy surgeries would be passed on. Dr. Carson is credited with bringing the hemispherectomy back in the late 70's after a long moratorium forbidding the practice due to the high morbidity rate. We were told that Dr. Jallo would be doing Jessie's surgery.
As time passed, we learned more and more about Dr. Carson and we bought his other two books; "The Big Picture" and "Gifted Hands". I'm reading one of them now. Each page that I read, I become more impressed with this man for his skills as a surgeon and for his ideals and convictions as a person. Google Dr. Carson sometime and you will be amazed.
A few days ago, Diana Pillas at Johns Hopkins called me, and had some news for us. A surgery date had been set for June 11th. It was hard to hear on the one hand, but a relief on the other, that maybe our darling little girl would finally get some peace. But how could we know that we had done the right thing. Did we pick the right hospital? Are we doing the right thing? Is the surgeon the right one? We may never know 100%.
Before we hung up, Diana, Dr. Vining's assistant at Johns Hopkins had one more thing to say. She told me that Dr. Ben Carson would be doing Jessie's surgery. I couldn't say anything for a moment, and Diana asked me if that was OK. I finally regained my composure and told her that I was just fine with Dr. Carson doing Jessie's surgery. I was honored.
At that moment, I knew that God was watching out for Jessie and that we had chosen the right place. Although it was half-way across the U.S., I knew that it would be worth it, and we would find the money to make it happen. (That is another volume of stories that I will get to later)
I called Kristi immediately, and she cried with the news that Dr. Carson would be performing Jessie's hemispherectomy. I cried with her.