Things have moved rather quickly since our last blog. Last week, Gov. Ivey opened the beaches in Alabama. (Yes, Alabama has beautiful beaches) This was one of Kaylee's summer bucket list activities she had listed during her last hospitalization. We were determined to make the trip happen! We were able to rent a house on the beach, where social distancing was much easier than in a condo.
On the way home from spending the weekend in Orange Beach, Al; we received a phone call from Dr. Daves of St. Jude. She called to inform us she had reached out to Texas Children's Hospital in Houston for our 3rd opinion, a tie breaker if you will. After reviewing Kaylee's case, they too agreed it was complicated and unusual. However, they put a different spin on the results than what we had been thinking. The tumor being 5 cm has always been the contributing factor in directing the course of treatment. Being she is the only individual under the age of 18 to ever have a documented tumor of this magnitude, there is not much data to go on. Texas doctors based their opinion on the fact that her tumor was not "behaving like a tumor in an adolescent", therefore they recommend the Right Hemicolectomy (RHC). We told Dr. Daves we would discuss the new information and make our decision soon.
Yesterday, we received a phone call from Dr. Gilbert, pediatric surgeon from Huntsville Hospital. He called to discuss any questions or concerns we may have and see which direction we were leaning. Kaylee spoke to him directly and said she thought having the RHC would be best for her. She said she does not want to worry anymore every time she has a stomach ache. Dr. Gilbert agreeing with our decision, said he would get her scheduled soon.
First thing this morning, the call came in from Nikki, Dr. Gilbert's surgery scheduler. She said there was an opening for this Friday and Dr. Gilbert would be on call over the weekend. We asked Kaylee her opinion and she said lets do it and get it over with! So this Friday, 5/15/2020 we are scheduled to arrive at Huntsville Hospital Women's and Children's at 6 am. Unfortunately, due to COVID-19, only 1 parent is allowed to go with her, and NO VISITORS! The surgery is expected to last approximately 2-3 hours. Keith and I will wait out front of the hospital in our vehicle, and they will call with updates on her progress. Once she is admitted to the floor after recovery, we had a reliable resource tell us the other parent can visit when the other parent leaves. Meaning only one parent at a time can be with her. Yes this is unfortunate, however as Kaylee sees it, she is not really missing out on much these days due to the quarantine. She hopes to be fully healed for summer swim parties, sleep overs, and club soccer! #weareunited
This afternoon, Kaylee was surprised by a few of her MMS teachers sneaking on the front lawn to post yard art #southernstrong! Kaylee looked out her window and said, hey is that Coach Kelli? Sure enough, out of the JEEP came Coach Kelli, Ms. Anderson, and Ms. Mays!! Thanks ladies for going above and beyond the call of classroom duty!
