To bring you up to speed..

Friends & Family,

Over the past month and a half, Z has been through the ringer. We have tried to give updates as doctors have worked to figure out what's going on, but here is the scoop...

In 2003, Z had a seizure on the soccer field and was diagnosed with a Grade 2 Oligodendroglioma. After undergoing brain surgeries, chemotherapy, and finally proton radiation therapy, he was declared tumor free in August of 2011. Z has had a spectacular year: seizure free, sharp mentally & physically, and embracing normalcy!

Just after his 31st birthday at the end of August this year, he traveled to Tennessee with the Women's Soccer Team and began suffering some acute onset memory loss, disorientation, and vomiting. His neuroradiologist immediately prescribed steroid medication for brain swelling and admitted Z to UVA Hospital. An enhancement on his MRI showed a new lesion just beyond the borders of his originally treated tumor. We were told that the enhancement could be one of two things. It could be something called "radiation change" or tumor recurrence.

Without a biopsy, it’s very difficult to decisively diagnose, and given the delicate location in Z’s brain, no one wanted to touch it! An MRI Spectroscopy and PET Scan were both done, and both “strongly indicated” tumor, though neither are 100% definitive. The recommendation from the tumor board at UVA was to start a chemo clinical trial that combines Avastin infusion and a trial drug that, in theory, limits the DNA’s ability to replicate. It’s a Phase II trial, and the Phase I had really good results. His docs are very excited about getting Z this treatment and the promising outcome it could have. He was slated to start Monday at the end of September, but a series of unfortunate events delayed the process.

On September 22, Z had a grand mal seizure that lasted over 30 minutes, a very dangerous occurrence called a “status epilepticus”. He was transported to UVA hospital where he proceeded to have 11 more seizures over the following 8 days. The hospital stay was an extremely difficult period, with Z’s seizures taking a very serious toll on his physical and mental state. When doctors (and Mrs. Thomas!) finally figured out how to get the seizures under control, he was released under careful supervision. Despite several serious medical issues during the visit, he was still deemed eligible for the clinical trial, which was a huge relief.

So, on October 1st he returned to UVA to start his first round of Avastin infusion and oral trial drug. He was really anxious about the “infusion” style chemo, but the process was smooth, and luckily this therapy is usually well-tolerated by patients. Z was a trooper and it was a relief to get the first round over with. He will travel to UVA every two weeks for the outpatient infusion treatment, along with taking the oral drug three times a week. Z has a brilliant team of doctors caring for him and we are hopeful that he will see rapid improvement from this treatment!

The series of seizures Z endured is no joke, and he is still in the process of recovering from the postictal side effects. He gets stronger every day and will continue to improve the longer he is seizure-free. His intelligence and neurological functioning are still very much intact, but his memory center has severe swelling that is interrupting his “timeline”. Basically everything that has happened since his first seizure ten years ago is intermixed with the present, so he is working hard to separate fact from fiction and put things in context.

Z’s humor and bright personality are also still ever-present, but he is frustrated with the circumstances and disheartened by the inability to do the things he loves most! He will need the unwavering support of friends and family throughout this ordeal. Please don’t hesitate to reach out, post your encouragement, and let Z know that he is not in this alone. It’s amazing to see how much his spirits are lifted in just the smallest of gestures, and he will need continued support and prayers as he battles to beat this disease once and for all.