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

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

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

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

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

Friends, I am writing you today with a heavy, hope-filled heart.  We’ve had a lot going on these last few weeks, and I believe it’s time for me to fill our family and friends in on details.

Two weeks ago, my husband Nick was diagnosed with liver cancer.  It’s still difficult to say those words without feeling like every ounce of my insides are being crushed into a million pieces.  Nick went into the ER with stomach pains…which led to tests, hospital stays, procedures and scans that detected the tumors.  Just to go back a little bit, when Nick was 18 he was diagnosed with a cryptogenic cirrhosis, basically a form of liver cirrhosis that they cant tie reasoning to as this wasn’t due to hepatitis or alcohol use.  He was getting a physical to play hockey when they discovered his spleen was enlarged and this is what led to his diagnosis.  Aside from regular bloodwork and checkups, Nicks condition has been very simple to manage; he put it on the backburner for years and tried to just live his life.

Now, to get you up to speed on where things are currently.  Two weeks ago when Nick was diagnosed with cancer we started testing and care at the University of Minnesota, where Nick has been in the care of liver specialists for years.  After receiving his cancer diagnosis we met with GI/Liver Specialists and Oncologists in an effort to see what options Nick has for treatment.  Now, in a perfect world, Nick would be eligible for a liver transplant here in the US, but unfortunately he is not because of the sizes of his tumors; they are covering over 50% of his liver.  We also learned that surgery, radiation and chemotherapy would not be of options to him as his liver is too damaged from the cirrhosis to be able to handle those treatments.  They talked to us about one option in immunotherapy that Nick could try with caution as they told us it may cause more harm than benefit to him.  We were discouraged in every way.

We came down to Mayo in Rochester, MN on Tuesday to meet with a GI Specialist/Hepatologist for a second opinion.  They, too, agreed that Nicks liver could not handle surgery, radiation or chemotherapy at this point.  They felt that the immunotherapy would at least be worth a shot, though.  But they also opened up a new path of hope for us: a possible transplant in Canada.  What we’ve learned is that the US has very different guidelines for eligibility of a transplant than Canada does.  The University of Toronto is a very well respected institution that is willing to do more “high risk” transplants; the prerequisites being that (1) the patient needs to be fairly asymptomatic and in otherwise good health and (2) the tumors need to fit within a certain criteria, mainly with regard to their aggression of growth.  I am currently sitting in the waiting room down at Mayo while Nick is in for a biopsy to determine if these tumors are something that would allow us to be considered by the U of T for a transplant.  We feel we are in the right place right now, and we know these medical providers will do everything in their power to lead us in the right direction with the right people.

In the midst of all of this darkness, we have been brought such light by our amazing family and friends.  As Nick said the other night, “I don’t cry anymore out of fear and sadness, I cry out of gratitude for the people around us”.  It is absolutely paralyzing to feel this kind of support and through all of this uncertainty, we feel so certain that we have the greatest army in the universe helping us walk through this.  You know who you are, army,  and we feel you carrying us.  Nick is the most brave, strong person I have ever known, he can do this….and I will be advocating for him and holding his hand every single step of the way.  When we sat Georgia and Jude down to talk to them about all of this Georgias response was “my teacher tells us that when people are sick the best things we can do are pray, be patient and be kind”.  And bless her beautiful heart, thats exactly what we will do.

So now, we ask for prayers. Prayers for Nick, for healing, comfort and strength.  Prayers for our children, that they will continue to feel constant light and love and that worry not be in their hearts.  Prayers for the doctors and medical teams, that they will be filled with wisdom and knowledge so that they can continue to guide us to the best of their ability.  And prayers for a sense of peace and contentment in our hearts, so that we are able to face each day and decision with trust, clarity and unwavering hope.

This website is where I will continue to share updates on Nick.  For those of you that are here strictly for recipes, my deepest apologies as you may want to unsubscribe…we are shifting gears.  To those friends and family that are already following along, we felt this was a safe, simple place to keep you updated as many of you are already following along. I’ve set this page to private and welcome anyone and everyone to “follow” this page who would like to walk through this journey with us; just scroll to the bottom of this page and click “follow” to get my updates on Nick sent directly to your email box. Feel free to share this website with other family and friends that would like to stay informed and have them request to follow along as well.

All the love,

xo