The Great Debate…
Friends of Zachary,
The last posting titled “Up and Down”, February 18th, was disappointing and concerning to all. The tone of the posting was to show we are dealing with real concerning issues but our continued hope and wishful thinking has never wavered. I wanted to share the latest update as I’ve been receiving concerning messages and continued prayers.
It appeared from Zachary’s last scan that his ventricles grew in size. Much larger than originally identified in the proceeding scan. The Endoscopic third ventriculostomy (ETV) did not appear to provide benefit to Zachary’s hydrocephalus as an apparent blockage and non fluid absorption was now happening.
As concerning as this was and the need to do something, there was a more pressing debate between my Oncology, Neurology and Surgical teams whether or not Zachary was in need of a full shunt to relieve the pressure and fluid from his ventricles or was something else causing the problem. There was uncertainty from his surgical team that the shunt would provide any relief. After many conference calls and ongoing discussions, Deena and I quickly made the decision because surgical and neurological could not agree on a consensus. At the end of the day, we decided to put the shunt in.
Although this was a sensitive and disturbing time, this example of indecisiveness or an apparent “crossroads” became the foundation of what Deena and I tried to accomplish when we built our medical team. Having multiple eyes on the case giving their unbiased opinion was truly the pinnacle of collaborative medicine. If every decision was made in a vacuum, I fear Zachary’s care may have been hindered. The ability to agree to disagree is incredibly valuable because it says to me, that we have a medical team not going by the book but thinking beyond their traditional training and looking to expand and take chances. Consensus sometimes breeds complacency. We needed our medical team challenging each other for the benefit of Zachary’s care. True, there are times when immediate consensus is required for standard of care, But In Zachary’s case, nothing is standard.
We have seen immediate relief and response just hours after surgery as Zachary has regained some mobility and is able to open and close his hands. Video of him walking in the hospital was sent via e-mail to his team. While these seem to be small successes, these are huge victories for our boy. Evidence of his accomplishment were quoted by his surgeon, Dr. Mark Souweidane, Vice Chairman, Neurological Surgery, NY Presbyterian/Weill Cornell saying…“Zachary Rules” or By Dr. Jeffrey C. Allen, Professor Of Pediatric Neuro-Oncology NYU Langone Medical Center saying “Surgery sometimes works better than medicines, for right indications” and finally Dr. Sharon L. Gardner, Associate Professor Of Pediatrics Oncology at NYU Langone Medical Center saying…”Great Job, Zach”.
Zachary spent the weekend recovering and as predicted, his eagerness to get back to school this past Monday was achieved. The past Monday was like any given Monday. No judgment by the students, fully integrated in his classes and a place to eat among friends during his lunch period. Now that this is behind us, we have 1 more main objective.
Our next step is to manage the tapper of his steroid and increase his combined treatment of targeted drugs. We continue to be hopeful that we are on the right path for success. Time will tell whether the drugs are working and the path we took was right.
Our Sincerest Appreciation,
Deena, David, Matthew, Zachary & Molly
“It Takes A Village”
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