On Christmas Eve 2018, after a second round of blood tests and weeks of watching our boy waste before our eyes, we were given instructions to go to OHSU Doernbecher in Portland Oregon, 3.5 hours away from our home on the coast in Yachats, Oregon. Our nearly 3 year old son Uriah had been sick for a month and wasn’t getting better, and mom had noticed something hard in his belly over the weekend. Something wasn’t right, and what was supposed to be a self limiting infection wasn’t getting better.
Uriah’s labs had gotten worse too, and as our pediatrician consulted with a hematologist/oncologist on the phone, they told us we should try to come up that day if we could. Within two days we’d undergone more tests and had an infusion. We had an answer that it was cancer, probably Neuroblastoma. There was evidence of a large tumor in his abdomen, a large grapefruit in our 25 pound child. There was evidence that it was in his bones. Bone marrow biopsies confirmed that it was indeed metastasized pediatric Neuroblastoma, a rare childhood cancer that only affects 600-800 children annually in the US.
Since Uriah had been rubbing his eyes and saying they hurt too, we finally got the doctors to order an MRI. The results found tumors near his eye and in his sinuses.
As parents we have chosen not to do a significant amount of research because we can’t stand the idea of facing the statistics about this disease. The doctors have told us that because of his age, metastasis and extent of tumor involvement, that this is considered a high risk cancer. Both in terms of treatment and relapse.
He was started on his first course of chemotherapy on 12/29/18.
But our son is NOT a statistic.
We will do everything in our power to help him fight and beat this.
Thank you for supporting us in our fight.
-Regina and Glen, Mama and Daddy