UPDATE: Madeline, Salt Lake City, and The Power of (her) Personal Agency

        Rejoice in the Lord always; again I will say, Rejoice. Let your gentleness be known to everyone. The Lord is near. Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. 

    Finally, beloved, whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. Keep on doing the things that you have learned and received and heard and seen in me, and the God of peace will be with you.

 

Philippians 4 - guarding our hearts and minds

 

Julie is my incredible colleague and administrative assistant at Anderson University. She walked into the office on Monday and said, "I was smacked in the face with the Bible today." I wondered who would do such a thing, and then she clarified that she was speaking metaphorically. Being a Monday morning, I needed some time to catch up. She then quoted Philippians 4 and focused on "Let your gentleness be known to everyone." That's a smack-in-the-face invitation, and it seems like a perfect way to center a new work-week.

Later that day, Lindsay was home solo with the girls. We have been stacked with doctor appointments recently, and she had a difficult meeting back at Furman later in the evening. Midlife is always full-bodied endeavor. The feeling of overwhelm was palpable, and Lindsay was thinking about making a bracelet to remember Madeline and to encourage her own spirit. She asked the girls for verses in the Bible about the mind and the brain. She happened upon Philippians 4. Lindsay read,  "And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

The evening finally came to pass, and Lindsay and I reconnected after being away from one another since the morning. I turned to her and said, "that was a good moment for me to practice Philippians 4." I was probably mumbling, and all she heard was "practice....Philippians 4.." She turned quickly and said, "What about Philippians 4 - I read it to the girls tonight." I looked at her quizzically. The miscommunication had a positive energy to it, so we backed up to seek understanding (a beautiful moment after 20 years of marriage). We took turns telling the stories of our day - me trying to ensure gentleness in every encounter; Lindsay finding solace in Scripture during a trying season. Philippians 4 has unfolded a life of its own for us this week, and it is especially finding a strong place in our hearts and minds today, Thursday, January 25.

 

Medical Update on Madeline

 

Many months have passed since we last gave an update on Madeline. This is as much due to the fullness of life and our desperate attempt for everything to be fine and well. If you spend any time with Madeline, she will assist you in believing everything is fine and well, but in reality she is experiencing significant pain most days, namely headaches, nausea, and fatigue. These are her symptoms, but we have spent time with neurologists, pain doctors, sleep doctors, gastroenterologists, ENTS, and radiologists to discover that inside her gorgeous head is a growing syrinx and growing pressure on her spinal canal and brain stem. If this paragraph feels overwhelming, then the intent of writing matches the impact of reading. I can feel the tears welling in my eyes and falling to my hands as I write.

We spent the last several months trying to understand the best way forward, and it became clear in October or November that another surgery might be on the horizon. I asked several to simply pray for a miracle, namely for the flow of CSF to improve, the syrinx to shrink, and her scoliosis to stabilize if not improve. I am still hopeful, but this might all only come to pass with another surgery (or two).

 

Expanding our medical network - The University of Utah

 

Our neurosurgeon, Dr. Troup, was wonderful in helping us connect to other doctors and opinions. 

After consulting with several neurosurgeons we have come to understand that Madeline needs a two-step procedure. The first is another decompression surgery with occipito-cervical fusion. The second surgery is "Trans-oral resection of the odontoid process" (trust me, don't Google it). The first surgery includes borrowing sections of rib bones to strengthen the brackets in the back of her skull (again, don't google); we cannot help but hear echoes of biblical creation imagery... Hopefully, the first surgery will create enough room and cranial stability to eliminate the need for the second surgery. 

Dr. Troup recommended Dr. Brockmeyer at the University of Utah in Salt Lake City. He is a world-renowned neurosurgeon, and we are grateful to enter his care. We met Dr. Brockmeyer via Zoom today. I am grateful for technology that made this possible. 

Dr. Brockmeyer explained everything and invited questions. Madeline quickly spoke up, "I have a question.... How soon can we do this?" I imagined we would be scheduling for late March or early April given Dr. Brockmeyer's reputation. So when he said, "I have an opening February 13," I was shocked. When I realized that February 13 is two weeks from today, Lindsay and I were overwhelmed. Madeline was overjoyed. There was plenty of fear, confusion, and sadness during the call, but the shortened timeframe was a moment of hope for her. So guess when we will probably go to Utah....? 

We have some logistics to cover in the next 48 hours to make this happen so quickly, but we are hopeful that these last six months of medical appointments, opinions, and planning will unfold in healing for Madeline. We are currently aiming for February 13, but if for some reason we cannot, Dr. Borckmeyer has an opening a few weeks later. 

When we fly to Utah we will plan for both surgeries (four days apart), but Dr. Brockmeyer will know after the first days of recovery if/when we should do the second. Madeline will need to wear a neck brace (classically known as a collar) for several months after the surgery but is hopeful to be free by mid-June. Additionally, the doctor said after these months she will have no restrictions. I could feel her perk up after his comment. She asked, "So does this mean I can go to a trampoline park in June?" He simply responded, "Let's talk about that later." Then he noted Madeline's masterful powers of negotiation. 

She truly understands this portion of Philippians 4, "....let your requests be made known ... to God."