Timeline Rewind

Here's a look back of the first month with a craniopharyngioma.

• August 14th - Consult in-person visit to CO Children's Hospital to see neurosurgeon, Dr. Todd Hankinson.

• August 11th - Corinth Elementary returns to school. Ben begins 4th grade with Ms. Smith and Sam beings 2nd with Mrs. Prinds. Thank goodness for structure and normalcy.

• August 8th - Staff meeting at Corinth Elementary to understand what the year ahead may hold. What's a 504? When do we need it. The principal and staff couldn't have been more supportive. There is such comfort in knowing these incredible humans are on our team.

• August 8th - Consult via Zoom with Children's National Hospital (DC) to discuss with neurosurgeon, Dr. Daniel Donoho
  

• August 7th - Consult in-person visit to Children's Hospital of Philadelphia (CHOP) to see neurosurgeon, Dr. Jay Storm
  

• August 6th - A magical Phillies game. Truly a memory none of us will soon forget.
  

• August 5th - Consult in-person visit to Children's National Hospital (DC). The intent was to meet with both the neuro-oncology team and neurosurgeon. Turns out the neurosurgeon we flew out to see was stuck in Tanzania. We kept our visit to the facility and had the opportunity to discuss with the renowned Director of Brain Tumor Institute, Dr. Roger Packer as well as pediatric hematologist-oncologist, Dr. Eugene Hwang.
  

• August 3rd - Fly east and met old friends with open arms to spend a week making memories, seeing Philly and DC and... meeting experts.
  

• July 23rd - Phone consult with Dr. Jay Storm of Children's Hospital of Philadelphia. He shared some hard truths about what we were facing (or perhaps I heard them for the first time) and invited us to see his hospital.
  

• July 22nd - Met with the Radiation-Oncology team at KU Med. Led by Dr. Ronny Rotundo, we learned the radiation team with KU handles all pediatric radiation needs from Children's Mercy. Sam quickly declared this was the best visit yet and had the nurse navigator, Sara wrapped around his finger.
  

• July 21st - Phone consult with Dr. Roger Packer of Children's National in DC and warmly welcomed us to meet his full team and visit the hospital.
  

• July 16th - First neurosurgeon appointment at Children's Mercy with Dr. David Garcia. Our first time seeing the tumor and having a clear visual understanding. A soft landing and ground zero of our understanding of the complexities and rarity of a craniopharyngioma. Ultimately, Dr. Garcia shared that he would not have the expertise to be Sam's neurosurgeon and encouraged us to seek consult with the pediatric radiation team at KU Med and other neurosurgeons across the country. He stated although not malignant, this tumor should have a higher grade due to reoccurrence.
  

• July 14th - Ophthalmology Clinic appointment with Dr. Basak Can to check the status of Sam's vision and optic nerves. An extremely in-depth appointment with every test imaginable. Sam wasn't a fan. He was tested for right at 3 hours, including dilation. Ultimately the verdict is still out on peripheral vision because at 7 years old, it's a very hard thing to understand and respond to accurately. He didn't ace it. We were also educated and informed about his optic nerves and were able to understand he does have thinning of the right side optic nerve (from the tumor pressure).
  

• July 11th - Sedated MRI at Children's Mercy of brain and spine. Our good friend Tember was able to be our nurse in sedation. Sam would say it was an easy one... he "just got to sleep"
  

• July 11th - Endocrine Clinic with Dr. Cintya Schweisberger. Her nurse team changed the tide and greatly decreased the IV and needle fears for Sam. Thank goodness for lidocaine cream. A veteran nurse and mom of 3 boys also worked magic to move our MRI up a full week. Truly incredible feeling to have this happen.
  

• July 10th - We are told through what will always be in the medical record as an incidental finding that Sam has a brain tumor. More specifically, a craniopharyngioma.