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May 12-18

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Hi everyone,

Sorry for the late night post, just thought I'd give a quick update. We had our meeting with Dr. Villasboas on Wednesday, April 10th, and unfortunately, it wasn't as uplifting as I'd anticipated. The dire new-growth PET scan results on the 5th were given to us by a nurse practitioner who was filling in and had no additional knowledge or insight, so it was just bleak and depressing. So I was hoping that on Wednesday, Dr. Villasboas would swoop in, calm us down, and somehow explain it all away. And well that just didn't happen.

Dr. Villasboas isn't a bullshitter, he gave it to us straight - chemo isn't working anymore and we need to move on to the next option(s). He was initially planning for CAR T-cell therapy, but my Dad's tumor didn't test positive for CD19 so it wouldn't have been effective. Lucky for us, we have our own little mathlete of medicine, Dr. Olivia, who came to the meeting with a BINDER of research she'd done the few nights before. (All laminated, highlighted, and color coded. In true Olivia form.) I was fully expecting her to slam the binder on the desk in excitement and demand attention to what she had found, but she just mousily raised her hand and delicately asked for permission to share some of her findings. Dr. Villasboas was pleased and eager to read. 

She'd actually come across recent work of a past colleague of Dr. Villasboas, Dr. Rosenthal in Arizona, who'd been working with a very new line of ALK-inhibitors that had shown promising results. Dr. Villasboas smiled and said he still works with Dr. Rosenthal on a board and would schedule a meeting with her, asap. 

Although this was encouraging news, my dad was very overwhelmed with the sheer amount of appointments added to his schedule that day, the next day, and so on. It looked like an endless lineup of poking and prodding, with no real finish line. (Which felt all-too real for him, given that he has vivid memories of going down the same road with my mom.) 
So with Dr. Villasboas' blessing, he opted to take a week off and fly us all down to Florida to get in some quality time and sunshine before this next phase begins. 

There, he had a few more virtual appointments about the ALK-inhibitors, which were uplifting and promising. It's still a very scary spot to be in, but I feel a lot more hopeful than I did a few weeks ago.

Like I said, this is a very daunting place to be, especially for my Dad. So if you could give him as much love and encouragement as you can, I think that would go a long way. 

Love you guys.

Xoxo,
GossipGirl

(Sorry with all this dark heavy talk, I had to get one joke in.)

-Gabby

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