So, a timeline of how things have gone with CJ (some details may be slightly fuzzy, for obvious reasons):
- CJ is born in early December. Cord blood is sent for genetic comparison to (my) dad's RB1 gene. (See back story linked above for more explanation.)
- While still in hospital, initial retinal exam is clear in both eyes.
- Until genetics returns a result, it's treated as CJ is also positive for the defect. Eye exam is scheduled for Dec 24.
- Dec 17(ish): Call from Genetics informs us that CJ's RB1 gene makeup does not match my father's- he has my mother's/my RB1 gene.
- Dec 24: Exam reveals nothing in the right eye and a small growth in the left eye, close to the optic nerve. Plans are made to see the pediatric ophthalmologist in Rochester the week of Dec 28 for an exam under anesthesia.
- Week of Dec 28: Exam date is pushed back to have a pediatric oncologist/ophthalmologist available during the exam.
- Jan 4: Exam day.
- We go in knowing of exam under anesthesia and MRI to be done.
- CJ is put under and MRIs are done first.
- We meet with the new doctor, who talks for a few minutes and then goes to do a quick examination.
Based on the extent of growth and aggression, possible fixes included laser treatment, cryosurgery, flying to New York for intra-arterial chemotherapy, or, if anything spread to the brain or elsewhere, IV chemotherapy
- Exam confirms the tumor near the optic nerve in the left eye, as well as a smaller tumor found in the right eye.
- Doctor returns with a second specialist, deciding to use laser treatment for both tumors. MRIs have been evaluated and there are no other growths outside the retinas.
- Due to CJ's age/slightly early birth, he is kept overnight for post-anesthesia evaulation.