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

Referral to Cornell

Not much time over here but wanted to let you know that we are heading to NYC tomorrow for a Thursday full of several appointments and evaluations for Nick with regard to a living donor opportunity at Cornell University. The surgeon in Toronto was so incredibly kind to get us in touch with a colleague/transplant surgeon at Cornell and we are so anxious to meet with him as all of the literature and research that we’ve read of his leaves us confident in his opinions and experience. We are praying he may have loop holes around the guidelines for a US based transplant that were discussed with us at Mayo..but more than anything, we are just hoping to get clarity and confidence on how best to move forward.

We will absolutely keep you posted…sending you hugs xo

Toronto Consult Update

We just met with the surgeon in Toronto, lots of information but I’ll give you the short of it. This physician wouldn’t feel comfortable doing a transplant on Nick until Nicks been treated to some degree first, for a multitude of reasons, but mainly because of the need to see how the tumors respond to treatment and to get a better idea of the biology behind Nicks tumors. He recommended we enroll Nick in the clinic trial at the U for TACE treatment (praying this is a confirmed option). After Nicks treatment he would give his body about 3 months to respond, and if all looked good at that point and Nick was responding positively we would begin the transplant process. The surgeon made it very clear that he understands our sense of urgency, but that transplant in a patient like Nick can not be rushed as there is much risk that could come with rushing all of this.

The surgeon was great and very willing to advocate for us. He let us know that Nick would be the first international living donor transplant patient they have treated, so the process could take a very long time due to there being no process in place for it. He told us he sees no reason on why he couldn’t operate on Nick if he responds well to TACE and is going to bring Nicks case in front of his board of colleagues to ensure that they would also feel comfortable with it.

He also talked a bit about a potential living donor transplant in the US..which would obviously be an INCREDIBLE option for Nick, but he just wasn’t confident that Nick would qualify, which we already knew and we’ve looked into to the best of our ability. He has a few colleagues in the US that he’s going to reach out to to see if we could somehow get around the guidelines and will be in touch with us about his findings. He just felt that it would be so much more beneficial in every way if Nick could have it done in the US.

In the meantime we will continue to work with Nicks doctors at mayo and the U of M to decide if and when Nick could start the clinical trial and their thoughts on that whole process-they initially recommended we see this surgeon in Toronto before making any decisions with regard to that. There are so many moving parts here, but one step at a time. The good news is that we have somewhat of a plan and a little direction. Our goal is still transplant for Nick, we just have a few hurdles to jump before we can get there. So for now we will stay diligent with these doctors and do everything in our power to keep Nick healthy at home. I’ve said it before and I’ll say it again, but I believe in my heart that some of this ugly disease can be controlled by Nick taking care of himself and we will keep at that with all of our might.

We’ve been trying to remind ourselves that this is a journey…a marathon, in fact. And while we will sprint when the time is right, we are committed to pacing and positioning ourselves in the right lanes for the win. All in all, we feel we’ve been assigned a lane today to start the race and that feels like a very positive step. We will continue to keep you all informed as we learn more, but for now we are going to go home to our babies and enjoy the heck out of time with our family this weekend. So much love to you all! xoxo

U of T Consult

Happy Monday to you all! We have spent the last few weeks poking the University of Toronto bear trying to get Nick scheduled for an appointment with the transplant surgeon..holy cow, you guys. I’ve always been a firm believer that you have to be your own advocate when it comes to healthcare…but we have entered an entirely new level of that. And I’m happy to report that Nick has an appointment booked for this Friday at 10:50am with the surgeon. We are so thrilled to get this ball rolling!

This appointment will be a consult. They have told us, and we agree, that it is very important for them to see, talk to and feel Nick before recommending a path for him…and that’s what this appointment will be. From there, the surgeon will be able to recommend a plan for Nick. Our hope is that transplant is the clear path he sees for Nick and if that’s the case we would schedule another trip for a transplant evaluation, but, for now, we just have to be patient and pray that this surgeon can make the best decision possible for Nicks well being.

I am also so very happy to report that Nicks bilirubin is trending downward pretty significantly, you guys. His bilirubin is an indicator of his liver function. His ‘normal’ has typically been around a 2 and it rose up to a 12 around the time of his diagnosis..and it hovered around there for a solid couple weeks. As of last week, it’s down to a 4.9 and you can physically see the decline in his bilirubin by just looking at his coloring…it’s remarkable. I truly believe in all of my heart this is because of how he is taking care of himself..he’s eating such a wonderful, tailored diet and has been religiously taking milk thistle..way to go Nickyboy! The power of food is incredible and I will never stop believing that. Let’s just pray this number continues to decline, or at least stays stable.

I know it’s been difficult for some of you to be patient with this process, and it is for us too, but please know we are doing everything in our power to stay on top of every piece of this puzzle to ensure that things can happen in a timely, yet effective way. We want to ensure things move quickly..but we also want to be smart about it and ensure that we are seeing the right people in the right places. We have also had appointments with regard to a clinical trial that is going on at the University of Minnesota..trying to keep as many options open as we can. This study would be for TACE treatment in patients with high bilirubin. And while this certainly wouldn’t be the most effective, safe treatment for Nicks particular case, if Nick is not eligible for a transplant in Toronto, this trial could be discussed as an option to bridge Nick to a place where he may become eligible. Just making sure we are checking all the boxes.

Overall Nick is doing really great. He gets very tired but has been an incredible trooper and is in good spirits. I thank God every night that this all happened during golf season..you may get a chuckle out of that but I truly mean it. As many if you know, golf is Nicks thing..it’s truly what keeps his heart centered. He has been trying to get out there to play when he can and I am telling you, he comes home from the course lifted up in a way you wouldn’t believe… it is his therapy. It gives him life, and I am so grateful for that. I went from getting annoyed when he’d play too much golf to now pushing him out the door to go play as much as I can…perspective is everything:) I’m so proud of how he is handling all of this so far..he’s an absolute champion ❤️

Thank you all for your continued love and prayers..we are still feeling it so strongly. I hope to have more information for you after our appointment on Friday. Sending you all love xoxo

Scan/Biopsy Update

Update time, friends.

Nick had both a CT and bone scan yesterday and we received the results today…the cancer is contained in his liver. All of the praises going up..what a relief and breath of positivity for the day!

We also received his biopsy results from his liver team at Mayo….the biopsy came back marked “moderately differentiated”, which falls within a criteria that University of Toronto would consider doing a transplant. This is certainly not a guarantee that Nick will be put on their transplant list…but it is a start. We now have the green light to go to Toronto for a transplant evaluation as they would like to see Nick. The surgeon in Toronto that Nicks liver team is trying to pair us with is booked out for over a month but the Mayo team is doing their best to make the connections and get us in as quickly as possible…their hope is within a week or two. We will also work on our own to get the ball rolling with U of T tomorrow in hopes of speeding up the process.

The liver team made it clear that they do not feel Nicks liver could tolerate any treatment during the waiting period or that the risk of complications of treatments would be worth what he could be jeopardizing; they think acting as quickly as possible on this transplant is what we need to focus on. So that, we will do. We are all in to make these next steps happen and are praying that Nick can be seen for an evaluation as quickly as possible.

All in all, our hearts feel bright and positive this evening; we are taking today as such a step in the right direction! Nick is feeling pretty good overall. He’s in good spirits and trying to stay up and going while also listening to his body when it needs a break. His appetite is amazing, which is so important, so just trying to keep him filled with all the good stuff.

Now, we come to the part where I crumble. Each of you. It’s not very often that I’m left speechless…just ask Nick;) But you all leave me without the ability to construe just how you have made us feel. We have read every single comment and card. We’ve felt every single prayer. Given thanks over every meal you’ve provided us. And literally cried tears when seeing each donation. I have absolutely no idea what a person can do on this earth to receive this sort of support, I just don’t. You have lifted us higher than we knew was possible and having you with us through this journey ahead is our greatest honor. There’s no thank you big enough. We feel your love and we hope you feels ours in return.

Hopefully more to come soon

Xoxo