Some of you know, but many of you don't. I'm just going to come out an say it: Beck has a brain tumor. A routine scan discovered it in August 2013, three days after we landed stateside with Everlee. It was a lot to take in, especially with a brand new daughter. Thankfully, it is benign. Now we know the cause of Beck's hydrocephalus, found in April 2012. They did not see it on scans prior because his brain was so swollen and distorted. With time, the shunt regulated the flow of fluid, and the scan images became clear. His prognosis is extremely positive. He will lead a normal life, can play sports, and most likely, will never have to undergo treatment. Though it is growing, there is space to fill without it affecting any brain function.
All of that said, an incoming base has to accept us. That is, they have the right to say whether or not they can take on our medical needs.
So we wait.
... Above was written July 2014, originally (and appropriately) titled "Our Life in Limbo." Obviously, Colorado graciously took us. Denver Children's Hospital is top notch for pediatric neurology, so it fit the bill.
After months of soaking in his diagnosis, visiting specialists, and learning more about his hopeful future, I am willing to share.
Here is Beck's story, recently written for a local journal.
My Voice for Awareness
Written by Jessica Waldman
At his 6 year pediatric check up, our oldest son, Beck, did not pass the vision test. Being legally blind myself, I thought nothing of his poor eyesight. (Sorry buddy, you'd inherited that gene.) Glasses were an assumption for my kids the day I found out I was pregnant. Not surprisingly, the pediatrician suggested he see an optometrist at our convenience.
Two weeks later, Beck and I were shopping at Walmart. When we passed the Vision Center, I walked to the counter and asked about appointments. There were no openings, but they took our name. Within minutes, over the loudspeaker his name was called. Someone had cancelled.
The eye doctor was a young female, approachable and sweet. She completed his exam and told him to go pick out frames. He was getting glasses! Just before leaving the exam room, she asked if I'd like to have his eyes dilated. "Why wouldn't we?" I asked. "Many parents choose not to dilate because it stings," she said. I rolled my eyes at the ridiculousness of that statement. I wanted a thorough exam, regardless of how my child felt about the drops. He picked out frames with a smile that took over his whole face. She brought us back in, tricked him into the drops, and with minimal whining, we waited for dilation.
With his pupils large, the doctor took a look. She glanced back at me unsettled, and immediately asked, "Your pediatrician said everything's ok?"
That sentence sent chills up my spine.
"You're not getting glasses today. You are going to the hospital." She excused herself from the exam room to make a few phone calls and write a script for me to hand to the attending ER doctor at Children's.
Although she wasn't forthright, I knew something was terribly wrong. With no symptoms, literally none, my oldest son had been operating with intense pressure on his brain and eyes. She could see the swelling from his dilated pupils.
Beck was diagnosed with hydrocephalus, water on the brain. Something was preventing his brain fluid from draining. At the time, we did not know the cause. Twelve hours later, he went in to surgery. Neurologists placed a shunt, or plastic tube, in his brain to reroute the fluid down to his abdomen. Beck affectionately calls it his "straw."
He came out with three significant battle scars and a permanent tube in his brain. He should have had poor balance, daily headaches, bouts of dizziness, and occasional vomiting. We should have seen signs. But there weren't any. He was riding a bike and playing street hockey the morning before we walked into Walmart. He was a normal, active boy with no complaints and few illnesses. Thankfully, he still is.
Sixteen months later, and three days after bringing our daughter home from China, a routine MRI found the cause. A small tumor blocked the drainage in the brain. It had been there all along, they presumed. They hadn't seen it on prior images because his brain was simply too swollen and distorted, it masked the tumor.
Our son is now 9 years old and is a student at Pinon Elementary. His prognosis is excellent. The tumor is not malignant, and it has room to grow without damaging his brain. He will most likely live with it for the rest of his life, as long as we always treat the hydrocephalus and have a properly functioning shunt. He gets regular MRIs to track the growth and the drainage of the fluid.
I share Beck's story, not to expose my innocent fighter, but for awareness. May is Brain Tumor Awareness Month. Beck's case has been presented at continuing education conferences, and it has been stressed that his medical condition would have gone unnoticed by the optometrist if she hadn't dilated his eyes. It would have eventually been caught, at the risk of irreversible damage, when his body simply couldn't adapt anymore.
Please, take your children to an annual eye exam, and have his or her eyes dilated. A few drops of sting, and some minutes of defiance, is worth the alternative.
