Quick Update

Haven’t written in a while, so thought I’d drop a few lines to touch base. I hope this update finds you well!

Not much new around here, which is always good news. We’ve had a wonderful few weeks at home living pretty normally and it’s been the biggest breath of fresh air. Nick has been feeling really well. He still gets a little tired, but overall he looks and feels great and isn’t experiencing any pain. We had a pretty intense family game of kickball tonight and Nick didn’t need a nap after…always a good sign;) Soaking up every ounce of him feeling well and having the five of us together…makes my spirits soar.

Nicks bloodwork is looking good. His hepatic/liver bloodwork is back to where it was pre-treatment which is a sign we are incredibly grateful for…this tells us that the Y90 wasn’t as rough on his liver as it could have been. His tumor marker number is down a bit as well..praying that number continues to trend downward.

We head back to Cornell early Monday morning for Nicks second treatment which will be that afternoon. Wednesday Nick will also have a procedure done with his heart to rule out any cardiac complications. He will have a right heart catheterization…they will likely go in through his groin for this as well. Asking for any extra prayers and positivity you may have…we are so hopeful that Nick checks out ok. And Thursday we will meet with the transplant surgeon just to check in.

It will likely be a tough week on Nicks body, but you guys, I feel more confident than ever that he can do this. Every single day I am blown away by his physical strength…it truly blows my mind. He continues to eat well and his appetite is still greater than that of a large army…all very hopeful signs:) He is mentally prepared for what’s ahead, and while moments of worry obviously occur, he is incredibly positive and overall still the same old mellow, bright-smiled Nickyboy we all know and love. I’ll say it till I’m blue in the face, but my gosh I am proud to call that man my husband.

Thank you all for your continued prayers and acts of kindness. We still continue to be amazed by your love and care…and we will be holding you close with us this upcoming week. I will be sure to update you as new info develops. Sending you love❤️

Counting Our Blessings

I hope this post finds you all well. It’s so hard to believe we are halfway done with summer..where is the time going? I hope these last few months have been wonderful for you!

Nick is feeling pretty good one week post treatment. He continues to be tired and sore, but each day gets better which is an absolutely wonderful sign. As of now, they plan to do his second treatment on Monday, August 5, pending it’s smooth sailing until then. He looks great and his spirits couldn’t be better, which is the real reason I am writing…

Monday. Monday our amazing family at Olympic Hills Golf Club pulled together the most incredible day of our lives.

We spent the entire day witnessing Gods love right before our eyes. We looked around the room(s) in awe, over and over and over. How do we even know this many people? How is possible that each one of these people were able to take time out of their busy lives to get here? How could the people who organized this pull this together so beautifully? But more than anything, how is it possible for us to feel this sort of love and joy in such a trying time?

We have been and continue to be surrounded by more light and love than I can possibly tell you. And Monday was a true testament of that. Some of you traveled many many miles to be with us, some of you our neighbors. Some of you we haven’t seen in years, some we are blessed enough to see daily or weekly. Ex-colleagues, childhood friends, college friends, hockey friends, best friends, church and school friends, mom friends, golf friends, friends of friends, our beautiful family and everyone in between, all together in one place, showing their hearts in the most incredibly selfless way by standing there along side us. We golfed together, we ate and drank together, we danced together, gave thanks and prayed together. And we will never, ever, forget how that felt. Indescribable.

Which takes me back to Nicks spirits. At one point on Monday evening I pulled him aside and said “just look around this room. You are being healed right before our eyes”, and I believe that with my whole heart. While no amount of love is going to directly shrink those tumors, the love in that room shrunk the stress, the sadness and sorrow. It cleaned him of worry and filled him with hope. And it wrapped him in strength he didn’t even know he had room for. Real, raw, organic healing; how absolutely beautiful. Since Monday, I can physically see it in Nick and I can feel it in my own heart.

The golfers had to come in a few holes early because of the most insane storm. Everybody squished inside, waiting it out. The fierce wind, the lightning, the absolute downpour. And in that time we gathered together for a bite to eat, to pray and hear a few beautiful words from Nick. And then it happened like clockwork. Just as we wrapped up inside, the storm settled. The rain, the wind and lightning stopped; It was calm. We all made our way out to the deck as the sun began to shine, only to find the most beautiful sign from God I have ever in my life witnessed: The most picture perfect double rainbow shining directly down over our army, like He hung it there just for us. To remind us that through all of the storm, all of the wind and sad and lightning and fear, is the most magical, pure, whole light imaginable, as long as we wait it out together. It’s impossible to translate what that moment meant while being surrounded by our dearest people, but it will be forever embedded in our hearts.

We laid in bed last night and Nick grabbed my hand. I gave him the usual “how you feeling babe?” and here’s what he gave me in return

“I’m feeling good, I’m feeling love. I have a renewed sense of hope. I feel strong and ready”

And I want you to know that is because of each one of you that showed up on Monday. From the absolute bottom of my heart, thank you. Thank you for healing and loving and never leaving our sides. Thank you for waiting out the storm with us. Nick could not fight this hard without you, and I’d never find the strength alone. We love each one of you so very much ❤️

here are a few photos taken so generously and graciously by Jamie Stoia. I can not say enough good about this woman’s talent and heart..you can find her by clicking here

First Y90 Treatment Update

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

Mapping Update

We are still at the hospital after a long day, but the treatment mapping and scans are done…Nick is feeling tired but really good overall, and I think we both feel great knowing the plan. He’s just laying down resting right now, we are hoping to be discharged in a few hours.

As I said a few days ago, the mapping was basically a test run of local regional therapy to see how Nick reacts and to help determine which treatment is best-the Y90 radiation or TACE chemotherapy-both directly administered into the tumors through Nicks groin. Nick was a total trooper for the mapping-he did great.

We just got the complete lowdown from the interventional radiologist-he reviewed the mapping results and scans with the transplant surgeon and they are 100% on the same page which is wonderful. They want to treat Nick with Y90. The mapping showed this treatment would be “favorable” for Nick-90% of the radiation beads will go right to his tumor, leaving 10% that could go into his liver-this is a more favorable ratio than we were originally thinking. That being said, that 10% could be enough to tip Nick over into liver failure, but it also may not be enough…we have to take that risk and see.

So Tuesday Nick will have his first treatment and they will Y90 his largest tumor. We will have to wait a few weeks after treatment to see how the tumor responds and then go from there. In the interim Nick will be monitored by both the doctors here and the physicians at the University of Minnesota-they will work together very closely. At that point, if Nicks liver responds well and the tumor has shrunk, they will go in and Y90 the 2nd largest one…but one step at a time. All in all we have a plan and are scheduled to move forward…so we are feeling some wonderful clarity.

We hope you all have such a wonderful 4th with family and friends. We are looking so forward to getting home to the kids and having some r&r for a few days❤️

sending you much love xoxo

Tumor Board Results

We spoke with the doctor today with regard to both Nicks scan results and the tumor board meeting that was held on Wednesday to discuss Nicks case.

So incredibly thankful to report that as of now the cancer has not spread…there is no trace of it in the rest of his body or blood vessels, which is such positive news.

On a more challenging note, Nick did not get approved to be listed for a transplant at this time. All in all, his tumors are too large. He has five tumors, 3 of them being very large and they need to be shrunk before he can be listed as he is way out of any criteria out there for a transplant. Many of you have had a difficult time understanding why the size matters and why that wouldn’t be more reason to just get him into transplant more quickly; I completely understand as we felt the same way until we understood the data. In a nutshell, there is a protein tumor marker called AFP…and research significantly shows that if the AFP is elevated too high in patients with HCC that go into transplant, they are at an extremely high risk of the cancer coming back very aggressively post transplant. Nicks AFP is just too high right now because of the tumor sizes. This DOES NOT mean nick won’t get a transplant down the road. It means that we have to shrink those tumors so that his AFP comes down before he can be listed. That may mean a few treatments, it may mean several, we just won’t know until we see how he responds.

Not much of our short term plan has changed. We will still go for mapping next week and still have treatment on the 9th and go from there. We hope and we pray that Nick responds beautifully to this treatment. We know he is in the hands of an incredible, aggressive, accredited interventional radiologist who has such heart for Nicks situation, and we are fully trusting him to lead Nick through this treatment to the best of his ability. That, paired with prayers, is what we have right now…and that’s an awful lot❤️

I’d be lying if I didn’t tell you it’s been a total struggle to lose the literal ability to look too far into the future, because it has been. It would be so wonderful to be able to have Nick on the transplant list and know that process has started. But right now that can’t be and we are dedicated to living treatment to treatment, as contently as we are able, while we wait for the next steps. In a way, losing that ability makes a person savor every ounce of those moments being lived in the present, and isn’t that truly how living should be? Unfortunately sometimes it takes very big things to help us see that, but we’ve seen it, and it’s a gift. Nick hasn’t lost hope and is so committed to fighting this…he continues to amaze me every day. He’s going in so strong…and we are still feeling good about moving forward with a plan and will always try our best to keep the glass half full.

Thank you for your continued concern, prayers, meals, childcare, gift cards, flowers, incredible acts of kindness..all of it. Please keep your powerful prayers coming❤️ we hope you have a great weekend! Xo

Transplant Evaluation Complete

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

Cornell Update

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.

Xoxo

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:

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