I was planning to do a big post at the then end of this week but so much has already happened in these first three days I just could not wait. Last week when we were going through all the drama with trying to get into MD Anderson mom went ahead and scheduled an appointment with an oncologist in San Antonio just in case my appointment got dropped.
Monday, March 7th we met with Dr. Sugalski and Dr. Longavin at San Antonio University Hospital. They are both pediatric oncologist Sugalski specializes in sarcoma / bone tumors and Longavin specializes in leukemia and other blood diseases. Both were amazing to meet with. Dr. Sugalski sat in the room with my family and me for over three hours and explained the “protocol” for treating Ewing Sarcoma. He explained to us that it will be 3 months for chemo ( with a lot of inpatient treatment), surgery to remove the tumor then another 6 months of chemo. We went into this appointment without knowing a lot about what the treatment would be like. We knew a little about the time frame but not about the hospital stays and other problems that would / could follow this treatment.
Today March 9th we made our way to Houston to meet with the surgeon Dr. Valeree Lewis, that will do the surgery on my leg. My family and I were given four options but the doctor recommended three to choose from. The first option was amputation (which is not at all what I had in mind or what I am planning to do). Option number two is something called rotationplasty. This procedure is very interesting to me and right now is my top choice. It will allow me to get back into high impact activities and do everything I do today ( I still have quite a bit of thinking to do but from what I learned today I feel like this would be my best bet) Lastly was limb salvaging. When we went into this appointment this was the only option we had learned about so I had my mind set for that. I soon learned it was not exactly what I had in mind. This procedure is wonderful but with how active I am I do not feel that it will be a fit for me. I will be very limited in my activities and at a much higher risk for infection.
Like I said I still have a lot of decisions to make and thank goodness I have a little bit of time to do so. Tomorrow March 10th we will meet with the pediatric oncologist Dr. Herzog here at MD Anderson. Our plan is to see what other options I have and if there are any different things they do here with the treatment versus San Antonio. Also if she will be willing to work with Dr. Sugalski that way I will be closer to home and my college buddies in Seguin and my best friend Dallas at UTSA.
These next couple weeks I ask if y’all could help pray for guidance. Prayers that God will lead me to the right decision on my leg, prayers that whichever doctor we choose if we have to that it will be the right fit. I know God has a plan and I am just so ready to see what he has in mind.
“Trust in the Lord with all your heart and lean not on your understanding; in all your ways submit to him, and he will make your paths straight. Do not be wise in your own eyes; fear the Lord and shun evil. This will bring health to your body and nourishment to your bones.”