Update 12/6 :: Cincy Recap

Well, yesterday was a whirlwind. Imogen wasn't allowed to eat until after her scan and everything was over, so she want over 12 hours without eating. To put that fun into perspective, just think of something that makes you sad.

Honestly, it was a yo-yo kind of day. We liked the folks at Cincinnati Children's. We did. Unfortunately, it just seemed like everything went wrong for a little while. The scan was delayed, the PET scan machine had to be completely reset.  All of that was ok, because Imm was in a great mood, and the staff was great playing with her and distracting her from a growling monster in her tummy. But they removed her nap diaper (much more preferable to a catheter, trust me) before she had fully come out of sedation, and she kinda tee-teed all over herself and.was.INCONSOLABLE. So that was fun.

But, that's not the point of this. Here's the score.

We really liked the surgeon and the oncologist, Dr. Weiss. In summary, he agrees with monitoring Imogen's tumor via MRI every 12 weeks. The PET scan showed no malignancy in the part by the kidney. There is still a little malignancy in there. It's very low, but it's in the part that is closest to the spine. So the only part for which they'd even consider a biopsy is inoperable. 

He's 100% against any aggressive or invasive approaches (chemo, radiation, surgery) from this point on, unless the tumor shows growth in future scans, or if she becomes symptomatic. He reiterated how rare this is, so there's no tried-and-true treatment regiment, and any doc would need time to observe before making any further decisions. 

We feel good that PET scan showed very little malignancy only on portion we could never get to anyway.

So, what's next? Well, Tiny is still at risk for urological problems, whether they be because of a physical obstruction or nerve problems. So, we will be meeting with a urologist for an ultrasound soon to see if her kidneys, ureter, and bladder are all able to do what they're supposed to.

Also, we are officially scheduling her surgery to get her port/line/robot out of her chest. It should be a fairly simple outpatient procedure, but it's still a surgical procedure. We decided to go ahead and get it out of there, assuming chemo will not be part of our plans again.  This will end the whole "fever means hospital" stage of her life, because the danger is really all about the port and line getting a bacterial infection.

So, that's it for now; I'll update more as we know more, and I'll try to get some pics from the scans so we can all see them.  For now, we're done.  It's a mixed bag. It's still in there. We don't get closure or get to make multi-colored posters that scream "cancer free!" We're in that uncomfortable middle ground of weighing benefits vs. risks and praying the tumor doesn't grow.  But we believe this is the best move for us and for Tiny right now. 

So, we should be able to get the port out, and Imm should be completely recovered by Christmas. For now, we have to hurry up and leave Cincinnati before we get snowed in. Thank you for all your prayers!