Noah had been seeing a neurologist for 2 1/2 years for regular migraines and no other neurological symptoms had appeared until November of this past year. His headaches changed, his grades declined and then a week prior to diagnosis, his teachers reported him being not himself- very tired, his handwriting becoming illegible and a hand tremor. The Friday before seeing the neurologist on Monday he reported that his vision was kind of blurry. His CT scan and following MRIs after being transferred to Brenner Children’s hospital in our home state of NC, showed a large tumor in his brain measuring 11.9 x 7.4 x 8.0 cm. He underwent two tumor resection operations while hospitalized and has lost all of the vision in his right eye and most of the vision in his left eye, and this will most likely be permanent. He still has a lot of tumor left and residual tumor encasing one of the arteries. All of the initial pathology was pointing to High Grade Glioma but when the final methylation results came back it showed that Noah has one of the very rare and newly identified subtypes of embryonal tumors, CNS Neuroblastoma-FOXR2 - Grade 4. St. Jude’s had already been reviewing his case and immediately accepted him as a patient and we were strongly encouraged by his oncologist to come here for treatment since they have experience. We’ve since been told there isn’t a lot of data about this type of brain cancer but the data they do have shows that Noah’s is very atypical as well. It is typically very chemo responsive and responds well to radiation so we just started his first cycle of chemo and will have 2 cycles to hopefully shrink the remaining tumor and then re-evaluate to decide if he needs additional cycles, surgery, or if we can move on to radiation, which will then be followed by cycles of stronger chemo. The biggest challenge has been learning to now navigate life with being essentially blind while also still working with PT & OT multiple times a week to work on regaining the strength in his right side of his body which is also weak now. We’re so thankful that one of the teachers at St. Jude’s is a certified low vision teacher and has already been working hard at assessing his limitations and testing out which aids are helpful for him so he can continue with schooling.

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