December 9th, 2017, Walker (aka Wookie) started vomiting. We thought he had a standard kiddo tummy bug. We went on clear liquids and popsicles for 24 hours, then back to a regular diet. He seemed well for about 3 days, then started vomiting again and it persisted long enough that he became dehydrated and had to be hospitalized for IV fluids. They thought he had a "post viral ileus", or paralyzed gut...stunned by the GI bug. This cycle of better, worse, better, worse continued through 2 hospitalizations and 1 all day ER visit, all at St. Francis Children's in Tulsa. We weren't getting answers or improvement, so our persistent pediatrician, Brian Raley, sent us to OKC on the evening of January 5th. At Integris Baptist Medical Center, they started an aggressive round of testing and by the afternoon of January 6th, we knew that Walker had a tumor on his pineal gland, deep inside his brain. We were transferred quickly to OU Medical Center Children's for consult with neurosurgery on the evening of January 6th...so here we are.
I wanted to create a place where everyone concerned could get updates on what is happening each day, because it is difficult to respond to so many messages and texts. But we want everyone to know that we are deeply grateful for everyone's concern and offers of help and prayers!! Please continue the prayers!!
MRI results are in. What you see in red is not supposed to be there. All of his tumor markers were negative on his lab work, so that means the surgeon must take a piece of it in order to identify it.
On Friday, he will have an “endoscopic third ventriculostomy or ETV” to relieve the build-up of CSF fluid that is causing the majority of the symptoms. While in there, they will take a piece of the tumor for pathology. Approach is front of head, endoscopically.
Based on everything so far, the surgeon is pretty certain that this will not be benign, but we need tissue and pathology to proceed with the proper course of treatment.
They started him on steroids to help with the swelling.
Green arrow points to the spot where they will open up to allow CSF to drain.
When Walker has his craniotomy for tumor resection on Tuesday, he will go to the Pediatric ICU for (hopefully) about 24 hours-ish. We do not have an exact surgery time, but have been told "late morning to noon-ish". His surgery will last 4-6 hours. Once ICU recovery is complete, he will transfer out to the same floor that we are currently on and will remain there until discharge.
Here are the Pediatric ICU Visitation rules:
3 TOTAL visitors at one time allowed
2 primary caregivers can stay the night
Siblings allowed to visit from 4:30-9:30pm
No visitors under 3 years old (during "flu epidemics", this
may be changed to no one under the age of 12)
No food or drink allowed
There is a pediatric ICU specific waiting room
The pediatric ICU's are on the 8th and 9th floor
- Rochelle Jennings
- Glenna Preno
- Trisha Eshelman
- Nahal Mirsaeidi
- Robin Caldwell
Organizer and beneficiary
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