June 05, 2015

Step Forward to Cure TSC: National Walk

The past year has brought more medical testing in addition to cause for hope for our family.

As Evan's seizures have increased, we have seen him struggle with additional challenges regarding memory which has also caused some educational difficulties. We knew it was time to step up his medical treatment and he spent 6 days at NYU Hospital to be evaluated for another brain surgery. The surgical process is a series of 3 surgeries requiring Evan to spend most of August in the ICU. This is not a decision we have taken lightly and Evan has led the way, telling us that any risk is worth stopping his seizures. He has tentatively been scheduled for surgery on Aug. 6.

In addition to this news, his recent MRIs revealed a small tumor on his liver and several tumors spread across both kidneys. The largest kidney tumor is 3.2 cm. and although we have spent many years watching it slowly grow, the time has come to take action. We are fortunate that in 2012 the FDA approved a medication that can actually shrink this type of tumor, literally changing the course of treatment for Evan! There are side effects, including a weakened immune system so we will wait until he recovers from surgery to start this medication.

Although this sounds like an overwhelming medical scenario to deal with, we are filled with optimism for the success of this surgery and the likely outcome of shrinking Evan's kidney tumors. On days that are tough, I only need to look at Evan for strength. He is always positive and ready with a joke and a smile and his laugh is infectious. He still participates in advanced curriculum coursework in math and language arts and is well-liked by his classmates and teachers. He has truly come a long way and our hopes for his future continue to be bright.

We are currently looking forward to joining the walkers that will come together on the Mall in Washington, D.C. to raise awareness and funds for the Tuberous Sclerosis Alliance (TS Alliance). So much of what we are thankful for is due to advances in medical research funded by this organization, so to say they are near to our heart is an understatement. I have also been working for the TS Alliance for about 3 years and I feel so fortunate to know that everything I do makes a difference for Evan and so many people living with TSC.

We will be walking as the Seizure Tracker team again this year and hope you will consider supporting our team in honor of Evan. Check out our individual pages by linking from the main page...

Team Seizure Tracker walks for TSC!

Thank you for being part of Evan's team!

Lisa, Rob, Aria and Evan

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