What a day. We had 7 appointments and are leaving Cornell grateful to have been led here. In a nutshell, we feel we have finally found Nicks medical team. I can’t quite put into words the experience we had today..at one point I told Nick I wish it was all being recorded because there is no way for me to translate how this team operated together, with us and the knowledge we gained…but I’ll do my best. Let’s just say that as we left, we both plopped into the cab and cried together. Hopeful, incredibly grateful tears.
Again, we got confirmation from the transplant surgeon, interventional radiologist and hepatologist that Nicks case is extremely serious and that he is not a typical HCC/cirrhosis patient they expect to walk through the door…he’s young, otherwise healthy and very strong given the advancement of his disease. Therefore, they want to treat him very aggressively, yet smart. Nicks only true hope is a transplant and they are determined to get him there. They need to bring Nicks case to the tumor board next week on Wednesday for approval, but as of now, they gave us a path they hope to take with him and we have 500% confidence that these doctors will fight for him to be approved for this path. We saw their drive and empathy for him right before our eyes.
We went through the majority of the transplant evaluation process today and will have to go back next week Tuesday to finish that and have a few more scans. After the appointments they will bring Nicks case to the board on Wednesday (the surgeon is already acting to get early approval) with this plan of action as the hope: to first treat Nicks tumors with local regional therapy through either Y90 radiation or TACE chemotherapy-they call this “bridging to transplant”. These are ethically required to see how Nicks tumors react before sending him right into transplant at this point. These treatments could be very risky for Nicks liver and send him into irreversible failure. On the flip side, Nick could respond very well to these treatments and we have no other choice but to take this risk. From there we hope they see positive response and can begin the transplant process.
We met with several coordinators and thoroughly discussed the living donor transplant process, which truly is the most remarkable procedure and is what is the best recommended route for Nicks case. They would take a section of a healthy persons (the donor) liver and replace Nicks liver with it-the liver regenerates on its own very organically, so both persons livers would grow back to full size very quickly. The science behind it is amazing.
Now here’s the caveat…they want us to find a living donor as quickly as possible, because they need that person ready to go into surgery in the case Nick goes into failure from these bridging treatments. I’ve had to have a lot of tough conversations in my life, but there can’t be any as difficult as this one.
If you know me, you know that asking for help, asking for anything, really, is my least favorite thing to do. I’ve had to learn very quickly over this last month and a half that sometimes you have no choice but to ask. And I am so grateful to so many for all of the help we have received this far.
While I’ve thought over and over again over this last month about how painful it would be asking someone, a hero, to donate some of their liver to my husband, there are two things that I literally say to myself every time (1) you ask for your children, Melissa. You advocate for them…and you do everything in your power to ensure they have their daddy here. It’s amazing what goes through your heart when you think about the possibility of your children experiencing the loss of a parent; it’s numbing. It’s the most horrific feeling I’ve ever felt and that feeling will keep me asking for help until we don’t have to ask anymore (2) somebody might actually WANT to be a donor and help.
So I’m just going to ask. Out of desperation for my family. If you know anyone, absolutely anyone, who is interested and willing to learn more about donation or who just has a question about the qualifications or process, please connect them with our living donor coordinator Darby. She is a wonderful woman and her job is dedicated to help answer any questions and share any information people may have about this process. One thing we cherish so much about Cornell’s program is that it’s not a pushy or high pressure environment and they truly have every patients best interest in mind..so even if it’s a question but you’re not interested, the calls are always confidential and welcomed and you can count on that. I will share Darby’s contact information and a link for more information at the bottom of this post. We are praying so fiercely that we can find the right person, for which we would be endlessly, eternally grateful.
All in all, it was a good day. Nick and I both agreed that being at Cornell with these physicians is the safest we’ve felt in over a month and that feels really good. While traveling back and forth is so far from ideal for us (I miss the kids so much it hurts) we understand that we have no other choice right now and we will keep walking forward. We appreciate all of your support so much, you guys…thank you for absolutely everything you’ve done as we continue to navigate all of this.
Here is a link for more information and also Darby’s contact information, please share it if you know anyone who is interested in learning more:
Living Donor Specialist, Liver Transplant
5 thoughts on “NYP/Weil-Cornell Update”
Incredible update…tears in my eyes just reading this update and imagining how great today must have felt for you both. -Sam Testa
I will continue to lift your family up in prayer that God will send the right donor
Nick and family – we are all following you on your Nourished Peach website. NIck, we just want you to know we love you and we care about you and your family. I am so glad that you have found a wonderful place for you to get the right treatment to get you the best possible care and to finally, move ahead. We are with you every step of the way. Sending prayers of hope, love and healing!
Love, Kraig, Barb, Steph, Garrett, Bryan and Brittany
You explain everything so well Missy – thank you. Nick is blessed to have you in his corner assisting in this fight! Prayers for Nick’s body to receive this treatment, shrink the tumors and more prayers for a donor match. xoxo
Praise God for the medical team & praying for the right donor! ❤