Kendall was diagnosed with NF type 1 when she was only 5 months old and has been through more in her 4 1/2 years than most people go through in their lifetime.
Because NF-1 tumors tend to grow on nerves, one of the typical complications is optic nerve gliomas (tumors on the optic nerve in the brain) that can cause vision problems. When she was around 18 months old, Kendall started a year of chemo for one of these gliomas. The treatment was successful as the tumor shrunk down significantly, although she had an allergic reaction and stopped treatment early. In Jan ’15 we hoped we were all done and had her port removed.
Just three short months later, we found two more tumors and summer of ’15 she began another round of treatment with a different chemo drug. After only 4 months on the new chemo, we found that it wasn’t working and stopped chemo again. She was taken off chemo in fall and we’ve gone back and forth about whether to start chemo again or not, lots of waiting and watching.