We are headed back from a few days in NYC. Will start by saying that we made some unbelievably special memories with the two big kids. What a gift to have them there with us. We are leaving feeling very grateful for this time!
Nick had both scans and bloodwork while there. We met with his transplant surgeon yesterday morning after scans. At that point we didn’t have bloodwork results..but we speculated a lot with him in hopes of Nicks AFP coming back down.
We found out last night that Nicks AFP went up again. Hearing this news felt like an absolute blow to our guts, I’m not going to candy coat it. The fear and worry set in and we gave ourselves the grace to mourn. All of this work that Nick has put in…so much grit…to hear that things aren’t seeming much better with regard to being listed. Heartbreaking.
But we met with his Interventional Radiologist to go over the scans this morning and I think we are both feeling a lot more hopeful after that discussion. As his IR said, this is a very complex, challenging case. He doesn’t want to provide us false hope. But he and Nicks surgeon are committed to this. They won’t stop trying. And we needed to hear that.
According to the scans, the largest tumor remains dead. The second largest one has about 20% remaining alive, 80% dead. So Nicks AFP rising is very confusing because the scans don’t show much change at all with regard to the smaller untreated tumors that are left. This makes it very challenging for them to know what to treat next to get that AFP as low as possible. The Radiologist that read the scans noted that she saw a new tumor but it can’t be confirmed at this point. It won’t be able to be confirmed until they go in for Nicks next treatment. But if there is, in fact, a new tumor, we could assume that is the one causing this rise in AFP.
So, as of now, transplant remains off the table. Nicks AFP is too high to risk going into transplant…the stats show a very high reoccurrence rate if they transplanted him with an AFP this high. We have to continue with treatments in hopes of bringing his AFP back down before they can list him.
So we head back to NYC next week for another round. The board is going to discuss Nicks case and scans in tomorrow’s meeting..but as of now, his IR is thinking it makes the most sense to go in and TACE the smaller tumors. If he gets in there and sees that the one they speculated is new is, indeed, new, he will start with that one..and go from there. He’d love to be able to target at least three tumors this next round, but he just has to go one by one once he’s in there. This will be a very long, complex treatment but Nick is ready. Bless his heart.
While yesterday felt like a hard hit, today is a new day. And tomorrow, and the next. Nicks spirits are so much better today…and as he told the doctor this morning “I’ll lay on the table for as long as I need, I’ll be here every day or every week. I’ll do whatever it takes. I’m all in”.
Although I know you’re already aware of how incredibly brave Nick is, I wish there was a way to show you how amazing it is to watch his strength first hand. He is an absolute warrior and I am proud and mind blown by his faith and grace. As little Rocco would say, “you’ve got this Daddy!”. And he does. He’s had this from the get go. I’ve watched it over and over with my own eyes…and have been fortunate enough to be by his side through it. This is an obstacle, there’s no doubt. But there’s something much greater ahead. I feel it in my soul. We just have to keep at it.
Each visit we leave with the doctors, I think to myself I trust these providers with my whole heart. Yet on the next visit, my heart somehow grows and lets in even more trust. It’s probably getting redundant for you to hear, but these two men and their entire departments have provided us a level of care that I didn’t even know was possible. While they can’t promise us a darn thing, they have given us the gifts of transparency, trust and safety that we can’t imagine doing an ounce of this without. From the late night phone calls and texts, to forgoing a vacation day to treat Nick, to the hugs and open arms they welcomed our children with. I’m grateful for an awful lot in my life, but the gifts these men have given us and the commitment they have to Nick and our family is not something that I will ever stop being paralyzed and humbled by.
To all of you that continue to reach out, pray and and support us…we thank God for you each day. We feel you along side us and continue to keep you close in our hearts. I will be in touch with any updates. Love to each one of you🧡