Hello all…hope you’re well and staying warm. Just waiting to head out of NYC and thought I’d shoot you an update…
Nick had a very long day of treatment on Wednesday and the procedure went as well as it could have. The tumor they saw on the scans that they thought might be new is not actually a tumor..we are incredibly grateful for this news! Now this presents the question: “if there isn’t a new tumor, why is nicks afp increasing?”..and while there is no black and white way to answer that, we have to assume it’s one of the remaining tumors that haven’t been treated that are causing it to increase.
Nick was in the procedure for a good 6 hours and his Interventional Radiologist was able to thoroughly map, study and treat him. His IR ended up treating the largest of the remaining tumors. While the scans showed that this tumor was somewhere around 2.5cm..he was able to confirm during treatment that it was actually about 4.5cm. We are hoping and storming the heavens that this is the tumor that is causing Nicks afp to go up..and that the treatment will work to kill that tumor and bring Nicks afp back down. About 90% of the beads his IR used went to tumor, 10% to healthy liver which is a favorable ratio.
For plans…it’s still wait and see. Nick will have bloodwork in about 1-2 weeks and we will go from there. If his afp isn’t down at that time, his medical team want to start moving more quickly and treating the other remaining small tumors, pending he can tolerate it…potentially in 2-3 weeks. If his afp IS down and it’s around 500, it’s sounds like his transplant surgeon really wants to push hard to get him listed. Trying so hard not to get our hopes up too high, but I can’t even imagine the feeling if his afp gets down to where we need it to be after this treatment. We are just so incredibly hopeful.
Nick is feeling well overall, considering what he’s gone thru. It’s been a few days of very little sleep, so he’s exhausted. His site of incision isn’t painful which is great and he’s experiencing very minimal side effects from the treatment. In a nutshell he’s just feeling kind of ishy with headaches that come and go but we feel confident that getting him home and rested up is exactly what he needs.
So many of you have reached out with such care over the last week or so. We can’t thank you enough for your genuine concern and love….it truly is such a big part of what keeps us plugging forward and we are incredibly thankful for that. Sending you warm, cozy hugs…I’ll be in touch! Xo