Long overdue update—but we waited until Savannah saw the team at Duke, her Chattanooga providers, Neuro Oncologist at Vanderbilt, and received genetic testing results.
Praise—we are happy to say her post-treatment MRI shows no signs of residual tumor or new tumor growth. Her spinal tap was negative. Her EEG was abnormal but specific to the area where her tumor was located, so that was not an unusual finding.
The Duke appointment lasted 1/2 day and we left with a solid plan. Savannah signed consent allowing Duke access to her past, present and future medical info. It will be part of an ongoing brain tumor study with the hope to eventually one day find a cure. They agreed with her Vandy team that she is finished with chemo for now.
She will get brain MRI’s every three months for 1-2 years, then every 4 months, then every 6 months. She will also get a yearly spinal MRI and routine lab work. After 5 years when she remains cancer free she will get a yearly brain scan and spinal MRI.
The Duke team will see her in person if there is a reoccurrence. Her Neuro Oncologist at Vanderbilt will manage her care for now, working with her providers in Chattanooga. This will require trips to Nashville every three months for a few years, but it’s worth it.
They decreased her Anti-seizure medication and so far she has done well with that change.
Savannah met with a geneticist a few of weeks ago and labs were drawn. Results indicate no genetic propensity for passing on her specific tumor type to children.
She is still experiencing some cognitive issues but it’s still early in recovery. Her medical team is hopeful she will continue to improve.
She completed her summer course with an “A” and is almost finished with her spring “incomplete” classes. After discussing college plans with her medical care team she has decided to decrease her fall course load and graduate in the spring. Stress is a potential seizure trigger and that is something we want to avoid.
We’re all still trying to process everything that has occurred before and since her diagnosis. This journey is far from over, but we are so relieved her first scan was clear.
This is the worst thing our family has ever walked through. I would not wish it on anyone. There have been a lot of dark moments and we could not have gotten through the past few months without our faith. Faith is also what we’re leaning on as we move forward.
If you have offered support in any way we want to thank you again. It means a lot. Your continued support is appreciated.
Please continue praying for her strength to improve, the brain fog to lift, no reoccurrence, no seizures, and for her cognitive deficits to continue to improve.
Please pray her fall semester is low stress and enjoyable.
#SavannahStrong
#ependymoma
