Journal entry by Barbara Bradley — Mar 25, 2015

Feeling scattered but determined. It’s sad when you feel like you can relate to the movie American Sniper. I have not served our country but I have been to war. My boots have been on the ground time and time again. It’s a war that never ends and no one wins. But we keep fighting. Fighting for our kids and our future.

We met with the neurosurgeon yesterday and decided to proceed with the “bolt” test. Usually the spinal tap is a reliable test but doesn’t always paint an accurate picture with kids like Katie. This Friday Billy will take her back to Duke and they will surgically insert a fiber optic wire into her brain and admit her over the weekend to check for changes in pressure. She could be having pressure increases that are causing issues on the right side. We can tell the ventricles are bigger and right side is being pushed over slightly. If the pressure isn’t normal, we will discuss putting in a shunt. It could be transient pressure issues that come and go where the body mostly absorbs the extra fluid but not always.  If this is the case, we may not want to insert a shunt because it has it’s own pros and cons. There are certainly risks to any procedure but we feel that this may at least confirm or eliminate this issue.

The other piece of this puzzle is determining if she could still have a connection. She really doesn’t have much tissue remaining on her left side. Unfortunately, a number of these kids need a complete anatomical removal of the entire diseased hemisphere because any residual tissue could cause seizures. We have asked for a longer MRI with DTI. Without getting too technical this will be a more detailed MRI than her recent one. Though not fail proof, this will help solve a piece of the puzzle. 

We are also looking to get an informal second opinion at Johns Hopkins. I was able to do this about 5 years ago when we began this journey. I just want another set of eyes to look over her records and scans and give us the reassurance we are on the right road. It’s a dusty road. I can’t see my hand in front of my face but I load my gun, take aim and keep moving towards the enemy. We are soldiers ready to fight and win this war. I am ready blow those S.O.B’s to smithereens. Boots on the ground.

If we weren’t having enough fun, our van is acting up. I will be taking it in tomorrow to replace some parts. I am still having good and bad days but starting to feel more like myself. It is hard to not feel like everything is piling on us. Billy has to remind me that these are all separate issues. When I met with the service tech at the auto shop, I was proud of myself for remaining calm and managing to be thankful. Thankful we are aware of issues that could cause major problems if we don’t tend to them. Thankful for the tax refund to pay for them. Thankful for not being stranded on the side of the road outside of Durham.