Up and Down…A Zachary Update.
Friends of Zachary,
I wanted to share a quick update on Zachary’s health and how he is doing on the new drug – BKM120. He’s been on the medicine for almost a month. We’ve been working with Novartis and his NYU team to focus on the correct dosing in order to prevent toxicity. We have seen some evidence of toxicity which we are quickly addressing. His mobility is impaired which could be attributed to several factors…reduction of the decadron, enhanced tumor growth, toxicity of BKM120 as well as other factors.
We continue to monitor every fiber of his being to make sure we are addressing all his needs. Tomorrow we are scheduled to go in for 1 month – post BKM120 scan. Candidly, we are always cautious and concerned but continue to be optimistic that the path we travel is in the right direction. True, we have hit many roadblocks along the journey but we stay determined to go through, over and around them and not let them get in our way.
As the dust continues to settle on our 9 month journey, I want to remind everyone how proud Deena and I are of our boys, Matthew and Zachary. They maintain a continued bond that is stronger than any medicine out there.
I know we will be in your thoughts and prayers.
Our Sincerest Appreciation,
Deena, David, Matthew, Zachary & Molly
“It Takes A Village”