Emerson was diagnosed on 5-9-08 with a brain tumor known as a juvenile pilocytic astrocytoma, growing on his hypothalamus. During tumor removal, Emerson suffered two strokes and is now very weak on his right side. Emerson finished nine rounds of carboplatin/vincristine (42 overall) on 10-30-09. We thought we were finished with chemo, then Em's tumor progressed in June 2010. On 6-18-10 we started Velban and will continue it for 52 weeks. Please PRAY for Emerson!
December 2007 - Vomiting and nystagmus are our first clues that something isn't right with Emerson.
January through March 2008 - More and more vomiting despite medicines for GERD, continually gaining massive amounts of weight though throwing up most bottles, Emerson never sleeps more than 15 to 20 minutes at a time so Yale and I take shifts around the clock. People surely think we are crazy. Nystagmus continues and now his right eye turns in. We are referred to a pediatric opthalmologist.
April 22, 2008 - After much waiting, we finally get to see the opthalmologist. Immediately, the vertical nystagmus is noticed and we are scheduled for an MRI on 5-16-08.
April 24 - Go see pediatrician and beg them to order a "stat" MRI. They call and get us put on a waiting list. I tell the doctor I think Emerson has a brain tumor, the doctor disagrees.
May 9 - After more waiting, the MRI is completed. Everyone else is carrying their kids out, we are taken back to find a very groggy Emerson and lots of people. We are moved to a "recovery" room to help Emerson get "woke up" where we are bombarded that Emerson has a "mass" in his head. We are admitted to the hospital that day and our world is turned upside down.
May 12 - Biopsy of tumor followed by diagnosis of "very slow growing" tumor, juvenile pilocytic astrocytoma, grade I. (which was not slow growing by the way)
May 18 - Released from hospital after sodium imbalance fixed and seizures under control.
May 22 - Portacath placed, supposed to start chemo but was a no-go, met with oncology the next week and said we were going to Atlanta.
June 3 - Met with Dr. Hudgins about partial resection. Scheduled surgery for 7-2-08. Noticed Emerson slept the whole way down to and back from Atlanta.
June 7 - After several days of thinking Em was "off", we took him to the hospital where we would "get the vomiting under control" and could go home. Asked repeatedly for a CT scan or MRI and were told it "wasn't necessary, because this is a very slow growing tumor".
June 9 - Finally CT scan reveals hydrocephalus, a HUGE tumor, Em's sodium is back down, and at that point, he was near comatose and sleeping the day away. Emergency transported to CHOA for surgery.
June 11 - VP shunt placement on left ventricle.
June 12 - Pre-op MRI shows a still blocked right ventricle.
June 13 - Em gets VP shunt on right side and tumor is debulked in an 8 hour surgery. Emerson gets 50% of tumor removed, but suffers a stroke that partially paralyzes him on his right side.
June 22 - CT scan reveals a clot in the main artery in his brain and also a hemorrhage somewhere else in brain, so we have a series of MRIs and CT scans over the next days.
June 27 - Lovenox started to prevent further clots from forming in the brain.
June 29 - Surgery for second Portacath placement since the first one doesn't work correctly.
June 30 - Em is 10 months old, gets his first dose of Carboplatin and Vincristine.
July 1 - Em gets a g-tube and ends up overdosing on morphine and back in the PICU on a ventilator.
July 10 - Moved to rehab! The last step before heading home!
July 17 - VP shunt is clogged, has surgery to unclog peritoneal cavity portion of shunt. MRSA colonized.
July 18 - Learn Em's shunts are infected, schedule removal surgery, move back to Aflac.
July 19 - EVDs placed, moved back to neuro floor awaiting negative CSF cultures.
July 20 - Shunt infection is not yeast or MRSA, turns out to be stomatococcus, but CSF culture comes back negative.
July 30 - Shunts reinternalized, C. Diff negative, Stomatococcus negative.
August 4 - HOME!!!
10/17/08 - Third shunt placed in subdural fluid collection.
10/30/09 - Last dose of chemotherapy, we pray it will be forever!
6/3/10 - Tumor bed looks changed on latest MRI
6/16/10 - Third Port-a-cath placed. :(
6/18/10 - Chemo restarted, Velban (52 doses)
8/11/11 - Velban finished! Praying for stable MRI on 9/20/11