UPDATE 01

I write to you from Tucson, where we just got back from Cooper’s early morning walk, before it gets too hot to be in the sun for more than a few minutes.

Jack’s been here for the past month or so, self-advocating and seeing an array of doctors and spending too much time on the phone with the insurance company. He’s experienced tinnitus and headaches for some time now, but symptoms ramped up in the last month, with intense headaches in the mornings, wobbly balance, blurry vision, vertigo, and total hearing loss in his right ear. He was sent into an MRI machine last Thursday (“It’s like The Titan submersible in there,” he reported back) and results were dropped into the patient portal on Saturday, with no calls or explanations from any doctor.

With deep gratitude and privilege, we turned to our personal neurosurgeon consultants - aka our dear friends Dr. Ali Rae (who has the perfect combination of brilliance and a calming bedside manner) and Dr. Joey Carnevale (who is such a good friend he took the time to communicate with Jack from the delivery room during the birth of his son - big congrats to Joey and Amita and welcome little Nico!)

The results were shocking and rare, proving Jack’s utter uniqueness. As we thought, he does have an acoustic neuroma on his right side but there is also another mass, likely a pineal gland malignancy.

So what’s next - 

The first step is to get a symptom called hydrocephalus taken care of. Then the doctors will be getting a biopsy of the second tumor, the pineal gland malignancy. There’s a constellation of things the biopsy could come back with, so there’s not much more we can know until we have that information. We’re heading up to Phoenix later this week or early next week to start navigating this all.

Jack’s youthful and strong (he has unknowingly been gearing up for recovery with kettlebell workouts 6 days a week) and ready for the fight.

More to come, thanks for your support.

xGrace

PS - If you’re wondering how you can help - right now what we need is support. If you don’t know what to say (who does in these situations?) even a simple text just letting us know you’re thinking of Jack is so appreciated. xox