Biopsy update from Gail
The results of Z's latest biopsy showed that there are no active tumor cells, certainly the news we all have been praying for. We now are focusing efforts to clear Z's brain of the swelling and necrosis that are a result of his radiation treatments. In December, Z suddenly lost peripheral vision in both eyes, and his right eye still remains badly blurred from the lesions in his brain.
We have a visit scheduled with a neuro-opthomologist next week at Hopkins and will follow up with an assessment at their outpatient neuro rehab program. Our hope is that they may be able to offer more options to compensate for Z's vision deficits than the programs we've found here in Virginia. Z had been working relentlessly to regain memory and physical strength, and the loss of vision has been a big setback but not one that has daunted his determination or outlook.Throughout all of the challenges and procedures he has faced, I can truthfully say he has never once broken down; his strength is indomitable.
Back in December, after he spent 7 hours in the office of a UVA neuro-opthomologist, Z was on the phone telling Dani the news that that the doctor told him: unless the lesions and swelling were eliminated, his vision could not change. She was telling him how sorry she was, and once again I was humbled with his reaction. I was barely holding it together and he told Dani "it was okay, I've been really blessed in my life and things could be much worse. And I know I'm going to get better."
When he hung up I broke down and said I was so sorry he was going through this and that I would do anything to take it away for him, and I wished it was me and not him. Without hesitation he said, "Oh no, I'm glad it isn't you mom, I couldn't handle it if you had to go through it."
The fact that the lesion has no cancer cells frankly shocked the entire neuro team at UVA for the second time: Z really is a miracle. His case will once again be presented at tumor board. We now are concentrating every effort possible to do whatever we can to rid Z's brain of the swelling causing these debilitating symptoms. To that end, he will resume infusions every two weeks up at UVA.
We also are pursuing the possibility of his receiving compassionate use permission from the FDA for the drug Panobinistat, which is not currently approved for use or available in the US. Z was initially given this combination of drugs back in 2012 in a clinical trial when it was thought he had a recurrence of tumor. He was removed from the trial because of a previous bleed found on his MRI, but while on the treatment for those two months, his lesion was reduced in size by 50%. Although the trial was for tumor recurrence, it clearly was beneficial in healing radiation damage, so I ask for your prayers in navigating the process of obtaining a potentially life saving therapy. Some of you may not know that Z was a neuroscience major at William & Mary and understands the term "neuroplasticity." It is now known that the brain can rewire itself, and that despite injury to his memory center he can through various repetitive therapies to develop new pathways. He was making progress to that end when hit with his vision loss. His balance has been greatly affected and he is undergoing neuro-physical therapy to compensate for his vision loss.
I'm sorry if this is more information than anyone wants, but I wanted to try and give you a glimpse into Z's day-to-day life as a way to let you know just how much your support impacts his life. It is a 24 hour-a-day, 7-day-a-week battle to rewire the injured portions of his brain, while trying to overcome the physical effects caused by the swelling that make it even more difficult. I will continue to update onPosthope.org as Z continues his journey to health. Thank you again for all of your prayers, kind words and financial support that allow us to seek the very best treatments for him because I know that all of you share my sentiments that Z is truly one of the best.
In hope,
Gail
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Comments (4)
One of the best? He is THE best! Z has touched all of our lives.. We love him and will continue to keep him (and you) in our prayers.
Gail, you all are in my heart every day...
All of the strength and hope and determination and fight....inspiring.
Thinking of you Z and sending lots of love!!