Hello family and friends…hope this update finds you well!
Nick had his first Y90 treatment at Cornell on Tuesday. The treatment procedure went well and as expected..the beads went almost exactly where they showed in the mapping. Nick is feeling ok…he’s beyond exhausted and sore and probably will be for the next week, but no other symptoms of concern at this point which is positive.
We met with the transplant surgeon, Dr Halazun, this morning for a check in. No new developments, just reassurance that we need to keep the focus on treatment to treatment to get the tumors shrunk. He discussed how a living donor is not a likely option at this point. Nick has two aneurysms on top of everything else, and this limits him in doing a living donor transplant for several reasons. It doesn’t mean it is impossible, it just isn’t likely. We discussed the deceased donor route again with him…which would be several months down the road pending the treatments are effective….lots of moving parts with that. Bottom line is that we need to get Nicks AFP, or tumor marker, down so that the board would even consider listing Nick. It’s a point system and is incredibly complicated, so I won’t go into depth. But in a nutshell, we just have to continue to wait and see how the treatments go and how Nicks liver and tumors respond…every plan with regard to a transplant is going to depend on that. And in the meantime these doctors are trying to work angles and paths in any way they can to get us there safely.
Now we head home and hope and pray that the radiation beads do their job in shrinking the first tumor over these next few weeks..and that Nick feels better. If all goes well, we will likely head back here for a second treatment in around 3 weeks to a month….but all of that is up in the air based on the results of the treatment.
While there will be so much uncertainty for some time, one thing we are so certain of is that Nick has the most incredible care team imaginable here at Weill Cornell. Dr Halazun, the surgeon, and Dr Malhotra, the Interventional Radiologist, are two people I can’t even begin to describe to you. They are aggressive, brilliant and innovative. But more than anything, they are remarkable human beings. Their empathy for Nick shows through and through, on so many levels, and I believe it’s because they aren’t far off from Nicks age and place in life as a husband and father. They go out of their way time and time again to check in on Nick and have formed such a special relationship with him. They call in the troops when needed, they make the extra phone calls, and they are so passionate about making sure Nick is connected and set up with every aspect of managing all of this. This relationship seems to be as meaningful to them as it is to Nick and you can so simply see it in the way they light up when they walk in to see him. We went from institution to institution to hear “I’m so sorry, but immunotherapy is your only hope and it may not do much for you” to landing here at Cornell where we’ve heard from these doctors “we will do everything we can to go to bat for you, treat you and get you to transplant because we want you to live”. And they are living out their words. I wish you could all meet them first hand, they are absolute angels.
We are grateful for all of your thoughts and prayers. And to those of you who helped with cleaning services, play dates for the kids and meals while we were away… I just want you to know how much of a difference you are making in our lives..the load you have taken off of my mama shoulders while having to be away is so heavy, and I am forever grateful. To those of you coming to the golf tournament or dinner in honor of our family on Monday…we are looking so forward to seeing your beautiful faces. You lift us so high.
Will update you as we continue to see how Nick feels over these next days. Sending you all so much love…xo