Blind Dad's Brain Surgery Part 2
Brian is a 43-year-old father of six who keeps winning the wrong lotteries.
Brian was born blind. Originally diagnosed with PFVS (Persistent Fetal Vasculature Syndrome), he started life barely able to see past his nose. As a young boy, he lost all the vision in his left eye when an anaphylactic reaction to a wasp sting caused a sudden complete retinal detachment, which was later followed by severe glaucoma.
Despite that, Brian was an excellent student growing up, and landed a stable career as a computer programmer. Married to his high school sweetheart, he became the father to triplets in 1999. The triplets became a miracle themselves, surviving severe prematurity at 26 weeks to come home strong and healthy. While the triplets were still in the hospital, they were seen by Brian's own pediatric ophthalmologist, who said that there was no way they could have inherited Brian's blindness because it wasn't genetic. They were diagnosed with mild Retinopathy of Prematurity (RoP).
When the triplets were three and baby number four was on the way, Brian got laid off in the dot com crash of 2002. Blind, with three-year-old triplets and a pregnant wife, competing with thousands of other unemployed programmers, Brian struggled to find work for many months before finally landing a job...one that required him to move his family all the way across the country, from Texas to Michigan, far from family and friends. Already facing bankruptcy and foreclosure, they made the move.
Life went along smoothly for a while, steady job, new home, new babies. Then baby number six came along, and when he was two months old doctors discovered that he, too, was blind. Brian had been misdiagnosed his whole life; his blindness was actually caused by a genetic condition known as FEVR (Familial Exudative Vitreoretinopathy). This one-in-a-million disorder has a dominant inheritance pattern, and four of Brian's six children have it, including two of the triplets. All four have varying degrees of visual impairment, and everybody now has to have angiograms and sometimes laser surgery every few months to try to prevent further vision loss.
Three years later, after more surgeries, cataracts, and glaucoma, Brian's youngest child was also diagnosed with autism. With his son barely able to speak at five years old, Brian worked to raise the thousands of dollars needed to provide a 4 Paws for Ability autism service dog to his son, a constant companion that has helped immensely.
Now Brian has been diagnosed with a brain tumor. The tumor was found after Brian noticed some hearing loss in one ear. Tests showed a massive tumor had stealthily been growing in his brain. Larger than a ping pong ball, the tumor is pressing against Brian's brain stem. If left alone, the tumor could kill him any day, as all it would take is a little more growth and pressure to cut off his breathing or even his heartbeat.
To take the tumor out, though, will require invasive brain surgery, not just once but twice. Brian will lose all hearing in the affected ear, leaving him completely blind and deaf on one side. There is also significant risk of facial paralysis, stroke, and death during the two surgeries.
One in a million eyes. One in a million allergies. One in a million triplets. One in a million brain tumor. So rare, even the paper covered it .
Last year, friends and family and even complete strangers gathered together to send Brian on his first bucket list trip. Brian took many pictures, even recording the sound of the ocean outside our balcony door, and these photos and memories were his go-to when the fear and pain and anxiety got to be too much as he went into his first brain surgery in January.
This was the first of two surgeries to remove the tumor and save his life. The surgery took ten hours, and they were only able to get about half the tumor, leaving a metal plate and 27 staples in his head. The pain and fear were excruciating. He was in the hospital for five days, and out of work for six weeks. He lost all of his hearing on his left side, leaving him completely blind and deaf on that side. He had to learn how to walk again, taking months to really get good enough that you don't notice his loss of balance so much. He got a resistant infection in the incision that sapped his strength again and required extra antibiotics. At his six week checkup, we found out that his neck muscles had to be cut away from his skull and sewn back together, causing neck pain that still persists six months later. We also found out that waking up from the surgery with a trach was a real possibility we hadn't been warned about.
And in just under two months, he's got to do it all over again. The surgeon says this surgery will be exactly the same as the last one, with the exact same recovery. This is extraordinarily stressful to face.
As we prepare for the second surgery, we are planning some activities to maximize his relaxation, to visit a few more places and experiences on his bucket list. We're also facing the expenses we know are coming: a hotel for his parents to stay in while he's in the hospital, food for his wife and parents during the hospital stay, cleaning services to get the house ready again for the invalid period. Anything we can raise over those necessities will go toward making this next trip again the trip of a lifetime, full of memories that he can treasure during the long recovery ahead.
Brian has devoted his life to others, as a husband and a father. He has worked hard, overcoming disability and obstacles, to provide a home and sustenance for his family. He deserves something for himself before again placing his very brain in someone else's hands.
The first round of surgery resulted in a much more trauma to my eye than I was expecting. After all it was the other side of my head. When I woke up it was painful and swollen and remained so days. I’m very afraid of waking up this time with no vision. Thanks to my parents and a wonderful teacher of the visually impaired, I’m about a thousand times more prepared to deal with it than most people, but it still scares the crap out of me. It’s going to be a very long 40 days. I can’t believe I’m doing this again. I must be insane!