Super Star

It's been a week of follow up visits and Phil has received rave reviews.  As I mentioned earlier, he was called an "outlier" by Dr. Ghosh.  When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old.  Everyone remarked at how far he'd come since being discharged from the hospital.  He had surpassed all expectations.

We also saw Dr. Mayer who has always been the most serious of the bunch.  He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone.  He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.

Today we followed up with Dr. Mansfield, his ENT oncology surgeon.  After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well.  He called him a "Super Star".  He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim.  Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope.  He said he was genuinely excited and not just trying to give him a pep talk.

Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years.  That may not sound like a lot but actually, there is no one in the county with more experience.  And every one of his patients have survived.  Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived.  His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully.  He is a case of one with Mucor on one side of the aisle and lymphoma on the other.  There are no studies guiding his physicians on best practices and outcomes.

Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video.  Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.

For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next.  Dr. Mansfield put it very plainly and clearly.  We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo.  If we put Phil back on chemo too soon and the Mucor comes back it would be his demise.  So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.

Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.