Eliza completed her chemo regimen for bilateral optic gliomas after having chemo nearly every week for over a year! She had her first chemo treatment at age 2.5 on September 7, 2018. Her last chemo treatment was age 3.5 on October 14, 2019.
Overall, Eliza’s treatment was relatively straightforward. She had several ER trips for fevers but never had to be admitted to the hospital overnight! She had an allergic reaction to her chemo drug about 2/3 of the way through treatment, but they were able to switch the type of chemo to complete treatment.
Her tumors overall shrunk during treatment. At the beginning, they told us there was a 33% chance they would shrink, a 33% chance they would stay the same, and a 33% chance they would grow. Eliza’s tumors both shrunk but the one on her right optic nerve is still there. It most likely will stay there her whole life. She is completely blind in her right eye and will also stay that way. We think she is maybe able to see some light and dark but nothing else. She has 20/20 vision in her left eye currently.
We had our “End of Treatment” appointment on the same day as her last chemo dose. She will get her port taken out with a surgery next Thursday. Eliza’s follow up care will look like this:
First Year After Treatment: MRI every 3 months along with ophthalmology visits to check for tumor growth/vision changes.
Second and Third Years: MRI every 6 months with ophthalmology visits to check for tumor growth/vision changes.
Fourth to Tenth Year: MRI yearly with ophthalmology visit to check for tumor growth/vision changes.
No more MRIs after that as long as everything is stable! The type of tumors she had grow again about 33% of the time, but that means there is a 67% chance they will never grow again! We are SO excited to have Eliza’s hair grow back, to not have her blood cell counts memorized each week, to see her energy come back fully, and to see her grow and thrive!