Vacation From A Vacation
Friends of Zachary,
It was four days into our vacation visiting family in West Palm Beach, Florida. We were all excited to finally distance ourselves from the last 7 months of doctor visits, scans and therapies. An 11 year old walks into an urgent care facility with an ingrown toe nail and ends up at NYU Langone Children’s Hospital for Hypertension.
Zachary was complaining about an ingrown toe nail this past week. I found myself taking him to an immediate care facility in West Palm Beach. As standard medical practice, his vitals were checked upon arrival and to our shock, his blood pressure was extremely high. We immediately consulted with our Oncologist from NYU who recommended we take Zachary to Miami Children’s hospital for an evaluation. After every conceivable test was administered, the good news was, his scan showed no signs of progression or enlarging of the ventricles. It was determined that Zachary was suffering from Hypertension (Like Father…Like Son). There was no real definitive rationale as to what the cause was. Some suggested it was side effects from the medication he was taking while others suggested it may have been pressure from the Hydrocephalus.
We flew back to New York on December 24th and immediately admitted Zachary to NYU Langone Medical Center. After a thorough evaluation was conducted by his medical team, Zachary was admitted to the pediatric step down unit where every conceivable test was performed. Blood, MRI Scan, kidneys, heart, etc. All tests came back normal. They were basically ruling out where the hypertension could have originated from. Again, we were put to ease by his doctors when they concluded that the medicines he is taking could have contributed to his high pressure. Zachary spent 3 nights at NYU and came home Friday, December 27th.
The Plan Moving Forward…
- Zachary will be carefully monitored for Hypertension with selected medications over the next few weeks.
- We currently suspended his targeted medications while we gain control of this blood pressure and headaches. We will quickly reintroduce his medication once we are confident he is stable.
- We are also consulting with his team about performing the Endoscopic third ventriculostomy (ETV). Although it is not confirmed that this is to root of the problem, we are in agreement that performing this surgery to relieve the pressure in his ventricles will be very beneficial to him moving forward. As in any surgical procedure, we are doing everything to minimize risk for a successful and healthy outcome (more to come on this topic).
As we look forward to ending of what seemed like an eternal year, we are very eager and optimistic about 2014. As I mentioned in an early post, Zachary will be an approved candidate for Novartis’s BKM120 drug which is the 3rd in a series of 3 drugs that will target his tumor. And finally, we are still several months away from the consideration of Anti CD47 out of Stanford Medical Center.
We wish you and your loved ones a wonderful holiday and a Happy New Year.
Our Sincerest Appreciation,
Deena, David, Matthew, Zachary & Molly
“It Takes A Village”