Just making our way to the airport to head home after a few days of evaluations and scans at Cornell. Not a ton to update you on, but here’s what we know…

The tumor board met this morning to review Nicks case…with which we will not hear anything today. At the meeting they discussed, as a whole, what plan they think is best for Nick. As of now they have us scheduled for Nicks treatment mapping next week on Tuesday. During this mapping they will basically do a test run with placebo beads for Y90 treatment to see how nick reacts and where the beads go. Based on that mapping combined with their discussion at the tumor board they will decide if Y90 or TACE is best suited for him. Then we will go back the following week for treatment which will be July 9th.

Nick has officially completed the patient transplant evaluation (which’s is way more intense than the donor evaluation) as of today. The transplant board, which is entirely separate from the tumor board, has their weekly review on Mondays, so they will meet next week Monday to discuss Nicks case and determine if Nick can be put on the transplant list. We need him to be put on the list as quickly as possible for a multitude of reasons. A few of the big reasons are (1) the donor evaluations can not be fully completed until he is listed (2) if his liver has a bad reaction to his treatment on the 9th we need a donor approved and ready for the possibility of having to go into surgery. So, right now we are praying that both the tumor board and transplant board work in Nicks favor to keep this process moving quickly.

Many of you have been asking if we have found a donor yet and the answer, in short, is no. A few of you have reached out to let us know that you have been in touch with Darby and I just don’t quite know how to thank you for even considering the selfless act of donating to Nick. But that is as much as we know right now, as they are trying to keep things confidential for both the donors and us at this point. But here’s what I can tell you: there can never be too many people that come forward and offer to be evaluated. They have made it clear that finding the perfect donor for Nick isn’t going to be easy, so they want every person to come forward that has interest, no matter their size or blood type, as we may need to get creative with options. We are incredibly hopeful that the perfect donor will come forward, but we have to prepare ourselves in the event that doesn’t happen. If you are one of the beautiful, brave souls that have called Darby with interest, there is no thank you great enough for us to give you. You are giving Nick the chance to live a full, healthy life. And you are giving me and my children the gift of hope that I will be forever grateful for. A hope to have our husband and daddy around for a long time, because we can’t imagine life without him. Thank you, from the bottom of my heart.

This is all we know for now, and I will continue to keep you updated as everything unfolds. I don’t know if I’ll ever stop gushing about the medical staff and teams here at Cornell, and we are so thankful to have Nick in such amazing, world renowned hands. As incredibly difficult as it has been to leave the kids, we feel this is what’s right for our family at this point. We are so grateful for the grandmas and friends that have kept our kids happy and loved while we are away. What a gift.

Thank you again for your continued love and prayers…we wouldn’t feel as strong and hopeful as we are without you.

Talk soon xoxo

Also going to share the link and Darby’s info again in the event that there is interest in learning more about saving a life and being a donor

https://weillcornell.org/services/liver-transplantation-hepatobiliary-pancreatic-surgery/living-donor-liver-transplantation-program

Darby Santamour-Saab

Living Donor Specialist, Liver Transplant

Phone: 646.962.4438