Helping Uriah Beat Metastatic Neuroblastoma
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Uriah is set to start his second round of immunotherapy Monday. Since the last post,
Well, here we are, inpatient for Uriah’s stem cell transplant. Perhaps I’ll do a what
Broadcasting live from the hospital: Unplanned admission for fever while neutropenic (that means no immune
It seems that the update schedule for Uriah will fall in line with his chemotherapy
On Christmas Eve 2018, after a second round of blood tests and weeks of watching our boy waste before our eyes, we we’re given instructions to go to OHSU Doernbecher in Portland Oregon, three and a half hours away from our home on the coast in Yachats, Oregon.
Our nearly three year old son 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.
His 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 some more tests and had an infusion, and we had an answer that it was cancer, probably neuroblastoma.
There was evidence of a large tumor in his abdomen, a large grapefruit in a 25 pound child. And there was evidence that it was in the bones.
Bone marrow biopsies confirmed that it was indeed metastasized pediatric neuroblastoma. A rare childhood cancer that only effects 600-800 children annually in the US.
And since he had been rubbing his eyes and saying they hurt too, we finally got the Dr’s to order and MRI, and that 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 Dr’s 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.
Thanks for stopping by and supporting us in our fight.
-Regina and Glen, Mama and Daddy