Round 2 – Cure to Care
Friends of Zachary,
We recently went to NYU to have Zachary assessed by his medical team. Unfortunately, we did not need a scan or a full neurological exam to tell you what stage he is in. Without being overly descriptive, his functions are diminishing quickly. As painful as this post is to write, it has been a reality for us for a few weeks. It is apparent the new drug BKM120 has caused (manageable) toxicity and the expected benefits are just not there. We have made a family decision to transition our mental state from Cure to Care. In doing so, we recently brought in VNS (Visiting Nurse Services) to start have “end of life” conversations and what care will be available in the day’s that lie ahead.
Zachary’s State of Mind
As you can imagine, his frustration level is high. His limited independence and increased deterioration would cause anyone to be angry. He is comforted knowing he has so many people support and care for him. He does not show fear or concern. He does have “end of life” comments, so we take a little comfort knowing he is personally preparing himself for what lies ahead. He is also finds comfort in his art and drawing.
Matthew’s State of Mind
How proud we are of our Matthew. He continues to be the consummate optimist and often teaches Deena and I a thing or two about belief and hope. Although he is our son…what a grounded, well adjusted, compassionate, hopeful individual. As you can imagine, Zachary is his best friend and continues to treat him this way without judgment, concern or anger. Matthew has been by his side every step of the way.
What Do the Doctors Say…
They see continued deterioration and constant determination but have no real concrete timeline. They have done a great job bracing us for what could be and helping us to manage expectations moving forward.
What do Deena and I Say…
Round 2…As you can imagine, I have been on the phone with ALL the doctors I’ve reached out too over the last 9 months. I have sent messages to over 100 professionals asking for their counsel and advice. There is a drug on the market called Panobinostat. This is an experimental drug developed by Novartis for the treatment of various cancers. Cancer types include…Hodgkin’s Lymphoma, breast cancer, Leukemia and prostate cancer.
This drug has been used in children to cure the following cancers mentioned above but never been used in pediatric brain tumors. Zachary may be the first child to gain access to this drug under the watchful care of Dr. Sharon Gardner Associate Professor; Department of Pediatrics (Oncology Division) at NYU and Dr. Michelle Monje, Assistant Professor of Neurology and Pediatrics Neurosurgery at Stanford University. There is evidence to believe that this drug has successfully penetrated the Blood Brain Barrier causing suspension and even tumor death. I immediately reached out the highest ranking executives at the FDA and Novartis for their support. Within 8 hours, we received calls and emails of support and these 2 organizations will do whatever they can to support Zachary in his time of need.
We are also considering re-radiating Zachary on Monday, March 10th. This is a 2 week treatment that would hopefully benefit Zachary by reducing some of his symptoms and stabilizing his tumor. We won’t consider this unless there is degree of certainly that his symptoms will improve.
I want to remind everyone, we are in a very delicate state. Determining the next steps will have a direct effect on the quality of life Zachary will lead. As I mentioned above, we have mentally transitioned from Cure to Care and in our hearts we know this is the right path for Zachary’s overall quality of life but we will NEVER GIVE UP HOPE!!
Our family has been briefed and are taking the necessary steps to prepare themselves for what lies ahead. With this post, I hope you all understand we are not giving up by ANY means. As long as Zachary is with us…there is always hope.
Thank you from the bottom of our hearts.
Deena, David, Matthew, Zachary & Molly
“It Takes A Village”