So our first full day in NY is under our belts. This is going to break the 4k character limit and take 2 posts, so don’t forget to move on to the next one for the end.
We met with Dr. Laquaglia this morning around 10am after they took a copious amount of blood from Eli’s central line for all sorts of tests. The Pediatric floor is quite cool with a pretty significant play room. Anyway, Dr. L actually went over Eli’s CT Scans with us and showed us exactly what he was going to try to do. He even showed us how it had changed from the first CT scan. I think my jaw hit the floor. We had never seen the 2 scans side by side before. It’s amazing how much smaller the tumor is now compared to how much of his little body it took up before. Chemo is amazing stuff.
Anyway, the best way to get to the tumor is going to be to go in from the left side between Eli’s ribs. It is also going to involve deflating his lung for more access. The 2 big concerns are getting it out from around his aorta (it’s completely surrounding it) and out from around the artery going to the kidney without causing any damage. He said it is a very real risk that we could lose his left kidney because of this surgery. He said it’s obviously a big priority to try to make that not happen, but the way the vessels are surrounded by the tumor, it’s a very possible outcome.
Speaking of possible outcomes, the hardest one to hear was the one we already knew. He looked at us and said, “I have to tell you, in all seriousness, that this is a very serious and life threatening surgery.” You spend all of your time trying to not think about the possibility of him not making it through surgery, but it’s hard to ignore when the surgeon is outright telling you how serious it is. Then he said, “We do absolutely everything we can, and then the rest is up to…” and he didn’t finish, but pointed upwards. That brought some immediate relief to Lacey and I as we nodded our heads in agreement.
He explained that Eli will look totally different when we see him after surgery. He will be VERY swollen from many fluids, will have a breathing tube and also a chest tube. He’ll have an epidural that can stay in for up to 5 days for the pain and obviously will be very drugged up for pain management. One mom we met tonight in the dining room said that her son slept for 2 days straight after his surgery.
The recovery is a complicated and multi staged process. I don’t even really fully understand it yet. I know that he actually goes across the street (literally) in an ambulance to be in the PICU at Cornell immediately after surgery. Then he goes to an observation unit back at Sloan once he’s out of the immediate danger zone.
As Dr. L left, Lacey said, “Thank you, we have heard nothing but great things about you.” Over his shoulder we heard him comment as he disappeared around the corner, “No, there is only One who is Great.” We both just looked at each other and smiled. He gets it.
Next we met with Dr. Kushner, just to talk about the Neuroblastoma team there and to learn a bit more about the 3F8 antibody treatment they do instead of stem cell transplants. It was a good talk, and he of course got to enjoy Eli at his best. At one point, Dr. K asked Eli what he was going to be when he grew up. Eli crinkled up his eyebrows, turned up the corner of his mouth and said “An adult.” Don’t worry Dr. K, you’re not the only adult that Eli thinks asks dumb questions. 🙂 We were talking about GCSF for stimulating white blood cell growth. I asked if this other kind of medication was like Neupogen (which is the shot that Eli gets when he is neutropenic.) Eli wasn’t even a part of the conversation and he said “Why are you talking about Neupogen?” Dr. K said, “We’re just talking about your medicine.” Eli’s response was “Well I’m not neutropenic, so you guys can stop talking about it.” I think Dr. K got a kick out of the fact that Eli knew the word neutropenic and it’s appropriate context.