not exactly the best news

Whitaker's MRI was scheduled for Tuesday, Jan. 12. However, it snowed so we didn't have school on Thursday and Friday before, so we asked Kosair to change his appointment to Friday so none of us had to miss school. Friday night we drove to Louisville and had the MRI and drove home. In the meantime I scheduled delivery of the hormones and had an educational phone conversation with the hormone company in California, and spoke with the nurse who was to do our training, as Whitaker will recieve one shot daily subcutaneously, and John and I are about the least medically trained people ever.

On Tuesday, I spoke with Dr. S. and she said that we could not move forward with the growth hormone until Whitaker sees a neurosurgeon because he has Chiari I Syndrome as detected in the MRI. The hypothalamus and pituitary are, thankfully, fine. I was writing everything down, but I was spelling it Kiari. She asked if he were having any headaches or anything, and I explained that he only has them when he coughs or runs a lot. Dr. S. said she would get him the first available appointment as he MUST see a pediatric neurosurgeon.

She told me I might want to look it up and told me how to spell it. When I spelled it correctly, I realized that it is the same diagnosis that two brothers in my school have and both of them had surgery on their brains. I told her that my other son has headaches, too, and she said that we would need to have him checked, too, because it often runs in siblings. I started to feel lightheaded and I was alone so I scared myself back to reality. I was trying to piece this together but I had about 15 minutes before I had to go teach my first class at Ivy Tech Community College. I was so excited about teaching the class and I want desperately to do a good job. I knew I had to a) walk out the door and not look anything up and b) get my emotions under control so as to maintain the upmost of professionalism.

I drove to school and texted a couple of people and told them the diagnosis and referral to a surgeon. One of them was my sister, the other a friend. I went and printed off my syllabus and managed to make it through the three-hour class, taking only one break to go to the restroom and check my phone for texts. John had a game that night so the boys had ridden the bus with him and were still not even home when I got home from teaching my class. I immediately started looking up Chiari and trying to learn as much as I could. I could see tell after about 10 minutes, that Whitaker was going to need surgery, and that Tretter probably has it.

When John got home, he asked me if I had gotten the results of the MRI from Dr. S. and I whispered to him that we have to talk after the boys went to bed. We put the boys to bed and I proceeded to tell him what I had learned. The next day I emailed my parents and told some friends at school, as I always have had a propensity for over-sharing. During my prep, I spoke with my good friend/school social worker, and she agreed to let me have a conversation in her office with the 7th grader that I have who had the surgery (we will refer to him as S. Wilson - totally not his real name). I wanted to be appropriate, but knowing the sensitivity of the issue, I didn't just want to start grilling him in class or the hallway. I got him out of art class, told him it was about me and that he was not in any trouble. The social worker helped me explain that I just had a lot of questions, I wanted this to remain confidential, and I very much did not want him to feel uncomfortable. He was, as I expected, a complete doll. He was so helpful and laid back and answered all of my questions. His info was concerning, but I learned his surgeon's name, his recovery time, and I was able to see what a bright, fully-recovered, adorable young man he is. He explained that his older brother was diagnosed first, he was subsequently checked and had a more serious condition with syrinxes. (not sure if that is spelled properly) Therefore, his surgery was scheduled first, followed by his brother's several months later. Knowing that Tretter's symptoms of migraines and bladder control are worse than Whitaker's symptoms, I couldn't help but feel a connection. I have since learned that any Chiari that is symptomatic at all needs relatively urgent attention. I cannot put into words how helpful this conversation was and how much I appreciate his candid, open honesty. I will be greatful for that forever.

When I got home that day, the pediatric neurosurgeon's office had called and given us the appointment time. It is on February 3, Whitaker's birthday. Then she said that our doctor's name is Dr. Wilson (not his real name, but the same last name as the boys I teach). I smiled, knowing that God is in control, and He has a sense of humor. At least that is how I choose to see it.

We planned to tell the boys about it after Wednesday night religion. John and I took them out for a Frosty, then came home to hold a family meeting. We tried to explain to the boys in as positive a light as possible what we had learned and what it might entail.
Whitaker just totally jumped to the conclusion and said, "So, I'm gonna have to have brain surgery?" Then we told him he would be going to the neurosurgeon on his 10th birthday. He smiled and said, "Happy Birthday to me, You get brain surgery!!"
We laughed and Tretter started to say, "I would HATE to be Whita....."
Right then we looked to him and said, "and it's genetic. You might have Chiari too. You need to be checked."
His eyes totally filled with tears and the color drained from his face. Tretter is an old soul and he understands things on a deeper level. Whitaker is a comedian and will use his sense of humor to get through everything. Tretter said, "I am not having an MRI!"
Whitaker said, "MRI - you're going to have way worse than that."
We explained to Tretter that if he has it, this is probably the cause of his migraines and his bladder control problems, both of which he would gladly get rid of if a cure exists. We went to bed Wednesday night with more questions than answers, reassuring the boys that we would get through this together.