Update

Hello you all. I write to you from JFK airport with some pretty stinking uplifting news….

462. 462! As of Monday, Nicks AFP is down to FOUR HUNDRED SIXTY TWO-the lowest its been! This is absolutely incredible. Nicks afp jumped up to 1600 the day before his last treatment a couple weeks ago…so to see it down to 462 after just two weeks post treatment is very very positive news. Now, we just hope and pray that it stays stable, or even decreases further.

We saw both his interventional radiologist and transplant surgeon today. While we all know that this number means nothing unless we get listed and transplanted…this is an insanely hopeful step down the right path and we are all celebrating this major win. So here’s the lowdown…

As of now, they are planning to have Nick listed for a transplant on Monday the 27th. Their selection meetings are on Mondays and unfortunately they don’t meet next Monday because of MLK day..so we have to wait until the following Monday for him to be approved. A few things need to happen in order for him to be listed that day :

-he needs to have a clean CT scan which he had this morning and passed

-he needs to have a clean bone scan which he will have back home next week

-his next bloodwork (on 1.24) needs to show his afp has remained stable/under 500

If all of this checks out in our favor he will be listed and things will start moving very quickly. There is so much involved in this that I’m not going to go into crazy amount of detail but basically they will start working up the incredibly selfless living donor candidates that came forward-a living donor transplant is his surgeons first choice if we find the right donor-and while that is all happening his surgeon will do everything in his power to find a deceased donor that may work. The problem with a deceased donor is that Nick will not likely get offered a healthy deceased liver for many reasons…so we have to play the game and when the opportunity comes to make a decision, we make the best one. Yes a living donor transplant could be risky for nicks aneurysm-but he feels he can fix it after the transplant-he just feels a very large sense of urgency to get this liver out of Nick before the tumors grow back-it’s a risk vs benefit deal.

We will also evaluate a need for another treatment once we get Nicks bloodwork back in two weeks. The good news is that his IR feels confident on where this afp is being released…so he knows right where he’d go if another treatment is needed.

This is only the potential beginning of a very long, intense road. But it’s a beginning and we are beyond grateful for that. Our heads are spinning with excitement, fear, caution, logistics and so many question marks..but we are blessed to be in a place where we know we can make this work because of all of the support we have. We have made it so far already and we will continue to do whatever we have to do to get to the finish line. Nick is so strong and capable.

And, because I so desperately want you all to join us in prayer and gratitude for Nicks care team, I truly just need to somehow try to help you understand these human beings. Nick and I sit here and try to grasp this piece of it all and it’s just so intense and overwhelmingly emotional to think about. While being told “I’m sorry we can’t help you” by two institutions 9 months ago seemed like the most heartbreaking, devastating, gut wrenching thing in the world…we are now so incredibly clear as to why that happened. We were led to this team at NY Presbyterian/Weill Cornell so intently, for so many reasons. Because they are exceptional at their craft. Because they are well studied and experienced. Because they are risk takers and feel Nicks strength and capability within themselves. Because they can empathize with Nick. But because of the way they’ve stood by us and seen the hope…that’s the piece I will never be able to loose sight of. From accepting Nick as a patient when they knew he was incredibly high risk…to continuing to treat him when it may have felt precarious…to refusing to accept no for an answer when it came to listing Nick. These gentleman and their entire teams have felt the worry and celebrated the wins along side us in a way I didn’t know was possible in healthcare. And while I know we have an incredibly long road ahead of us and that we have nothing guaranteed, the safety we feel about what’s ahead is the most comforting thing in the world. And that safety is because we know Nick is in the care of the very best hands and hearts. I just simply want you all to know them so badly….the real estate in my heart for them is indescribably big. So if you would be so kind, your prayers for them would mean so much. Prayers that they continue to see potential in Nick. That they continue to have clarity and precision in their work. And that they know and feel the utter gratitude that we have for them.

So that’s all I have for now. We are feeling pretty high today and that feels amazing. Nick has a little cold, but beyond that he has completely rebounded from his last treatment and is feeling really good. He physically looks so healthy too…what a beautiful sight. We will continue to keep you posted if anything comes up and I will absolutely let you know once we get bloodwork back in a couple weeks or so. In the meantime, please keep your beautiful prayers and light coming….man are we feeling it all 🧡 So much love to you xo

Happy New Year!

Happy 2020 to you all! I hope your holidays were wonderful and that you have been enjoying time doing whatever it is that fills your heart up over these last few weeks!

Just here with an update on Nick. We returned yesterday from NYC…he had his treatment procedure on Monday. The procedure went very well itself. As you might remember, there was an area in the pet scan that very visibly lit up red, unlike any other area on Nicks liver. His IR went in on Monday and confirmed a very large tumor, roughly around 6cm. Everyone is scratching their heads at how this wasn’t seen on any of Nicks scans. We sat down with his IR and thoroughly reviewed all of the scans…and all we can gather is that this large tumor was either attached to or overlapping with the second largest tumor that was treated a few months ago. We learned it’s incredibly rare for this order of events to happen..for the scans not to show a tumor..yet a pet scan light up red..and his IR to actually confirm and locate a tumor in the area lighting up…and we are thanking our lucky stars for this rarity. His IR was able to target this tumor and ensure that about 90% of the treatment beads made it into this tumor. He also targeted a small one on his route…because he had the ability to get to it and enough beads to do it along the way.

All in all, this is incredibly hopeful news. We truly couldn’t ask for anything more out of the treatment..the doctor had so much clarity on where to go and such success in getting the beads where he needed them. We are just so so hopeful for this tumor to be the one that is releasing all of the afp..and praying that it responds to this treatment.

Nick will have bloodwork in two weeks. This isn’t a ton of time to let the treatment work..but hopefully we may see some sort of change in his afp. A few days later we are scheduled to be back in NY for meetings and tests. We had a long chat with both his surgeon and IR and there are basically three ways this could all go:

1-this treatment could bring his afp down below 500 or right around there…at that point they would start pushing hard and getting the process going to list Nick for a transplant

2-they see his afp drop a tiny bit…at that point we wait another couple of weeks to test again or potentially do scans and schedule another treatment to get this tumor again

3-they see a rise in his afp…at which point we sit down to discuss other options. If his afp doesn’t drop after this treatment, his doctors aren’t confident that this local regional treatment could benefit him any longer. We would need to talk systemic options..and it sounds like it would be immunotherapy. While it isn’t statistically the most successful with dropping down an afp in a situation like Nicks, they all feel like it would be worth a shot and that we’d have to try something. We will cross this bridge if we get there.

As you know…we are relentlessly praying for option 1. We have a few weeks to wait until we have any sort of answer at all..or even any leads to an answer…so we just have to try to focus on the favorable possibilities at this point. While some of the options are sounding a bit scary, there is so incredibly much that could go right here. Patience…we are trying so hard to stay patient.

I’m not going to candy coat it, Nick isn’t feeling great. He had his procedure on Monday and has spent most of the time since then in bed. He’s absolutely exhausted..he’s had bouts of nausea, headaches and is having some pains. We are holding onto the fact that the pains could be tissue and tumor death. He’s in very good spirits, considering, and he gets up once in a while for a game of cards with the kids or to hang out with us or have a meal. He says it’s not unbearable, but bless his heart I know he just isn’t feeling well. It sounds like the first three days could be the worst of it..so hopefully he will turn a corner in a day or two. We will just keep pumping him full of nutrients and rest and will have him back to normal in no time…I’m so sure of it.

We will take any and all light, positivity and prayers you have to offer on Nicks behalf, friends. For healing and a speedy recovery from this treatment, for positive answers and clarity in a few weeks, and for our hearts to remain patient and positive.

Although Nick wasn’t in great shape, we managed to have a wonderful chat on NYE. We both agree that while this past year was incredibly challenging, the amount of good that came out of it is something to write home about. We are firm believers that kindness is contagious and we are certain that all of the kindness we received in 2019 has been spread throughout the universe and is still going strong…what a remarkable feeling. The prayers. The meals. The donations. The rides and extra hugs for our kids. The childcare. The overnights. The shoulders to cry on and the hands that picked us up off the floor. In five, ten, fifteen years from now, when we look back on 2019, I’m so positive that what will stand out the most wont be the heartbreak, the fear or the challenge we’ve experienced this past year, it will be how much more rich and blessed our lives became. For so many reasons; because of the unconditional, vulnerable, raw experience of love it gifted our marriage, because of our beautiful, patient, resilient children, because of the way our hearts and faith in God have grown, and because of your unbelievable support. We are incredibly confident that 2020 will be our year and going into it with you by our sides is something we promise to never take for granted 🧡

As always…I’ll be in touch. So much love to you all xo

PET Scan/Endoscopy Results

Hello all. It has been what has felt like the longest week ever waiting on results…and I’m happy to say that we have them today.

Nick had his pet scan on Tuesday and we just spoke with his interventional radiologist…the cancer has not spread outside of his liver. Oh my heart….I can’t even tell you what it feels like to hear this news! The scan also showed the second largest tumor (Nicks 2nd treatment that was Y90) is lighting up to be very active. While there is no scientific evidence of this, the scan basically shows a large “red flag” in this tumor..that something is off and different than the others. This gives his team something to target next, which is what we were praying for. Hallelujah!

So Nick is scheduled for a treatment on the 30th at Cornell to target this tumor again, this time with TACE. His IR feels that there is no question that the TACE is the way to go here….this tumor didn’t respond the way we wanted it to with the Y90, so we need to go this route. He also is hopeful that this TACE may not be as hard on Nick as the last one because nearly the entire lobe he will be treating is all tumor…so not much liver to hit.

Now, the caveat here is that if this treatment doesn’t work to bring Nicks AFP down his IR’s hands will be very tied and he isn’t sure there’s much else he could do from a local regional treatment perspective…we would have to potentially start looking into systemic options. But for now we aren’t going to focus on that..we are going to pray and stay hopeful that this treatment could be our game changer.

Nick also had his endoscopy today and I’m so happy to report that everything looked great! His varices he’s had in the past haven’t changed and there was no “fixing” or banding needed with that….and his ulcers are fully healed. All the high fives to Nickyboy for taking care of himself…I am so sure this is making all of the difference with everything!

So now we plan to spend our NYE in NYC…and I can’t tell you how much it hurts my heart to think about being away from this kids during that special time. We know we just have to do what we have to do…and Nick and I will find perspective starting off a new year alone to truly reflect on all that’s transpired this year. From job changes and worry, to an insane amount of growth in our children, to battling this path we are currently on and everything in between…it’s been a heck of a year but we truly have so much to be grateful for. This past year has been filled with so much worry, but it has also brought our family closer and has enriched the bond between us to a level I can’t even begin to describe. It feels so good to know and truly believe and live out that no matter what, in any circumstance, all we need is each other to keep on going.

Today feels like the greatest Christmas gift in the world! While we know there are many more hurdles ahead of us, hearing all of the positive news feels incredible. We are so excited to go into this beautiful week ahead with more hope and gratitude than we’ve felt in a while…what an absolute blessing.

Nick is feeling great. He’s very tired today…it’s been a long week and the anesthesia from today isn’t helping;) but he’s snoozing now and can completely unwind this next week without such a heavy load on his heart. It feels really good to him to have a next step in place. Bless his strong, patient heart.

Lastly, I want to wish you all the most Merry Christmas! I’m struggling to find the words for what you’ve done to our hearts over these last eight months. We feel you…and we hear you..and we see you carry the heaviness of this road with us. But we also feel you celebrate the good with us, too, and what a gift it is to have you with us through all of it. We want you to know that as we sit and reflect on 2019, you will be held as one of our greatest, most incredible highlights. We love you so very much. Xoxo

This week

Hey guys…just a quick note to fill you in on what’s going on this week.

Nicks care team talked and, as speculated, they want Nick to have a pet scan before a concrete next step is put into place. They are hoping the scan can give us some clarification as to what’s going on. He will be having the pet scan done at the University of Minnesota tomorrow morning. We hope to get results and some answers within a few days. We are asking for all the prayers..for clarity, positive results and hopeful next steps to be put into place.

Nick also has an endoscopy at the U on this coming Thursday morning. This is a routine procedure he has to do to just make sure everything is looking ok from a GI standpoint.

All in all Nicks feeling pretty good. He feels great most of the time and then sometimes hits a wall of exhaustion. He’s been great at listening to his body and has been in really good spirits over the last few days.

Sending you all the warmth as we all prepare for this beautiful holiday ahead…such a special time of year with loved ones. I’ll be in touch! Xo

Checking In

Hi friends and fam. So sorry I’ve been absent..just so much going on and a lot of waiting and unanswered questions on top of it all. I don’t really have a ton to update you on..but thought I’d just let you know what’s been going on these last three weeks.

Nick didn’t feel great after his last treatment..it really took a toll on him. He was exhausted and had some flu like symptoms..he felt pretty yucky. He started to turn a corner about a week and a half ago and has been feeling much better since. Still tired, but nothing compared to how he was feeling a few weeks ago. He’s got pretty good energy and has been back to business as usual for the most part:)

He’s had lab work done 3 times in the last three weeks. The first week showed that his AFP jumped up pretty high. The last two weeks have shown that number to stay stable. The doctors just can’t even speculate at this point as to what is making his number climb and they want to do a pet scan to try to gather more information before coming up with the next plan. His hepatologist, interventional radiologist and transplant surgeon will all meet and discuss everything on Wednesday..in the meantime we are waiting for approval for the scans through insurance. Our guess is that we may have to head back for scans next week, but we just don’t have any concrete answers at this point.

Does it feel scary to see his AFP rise like it did? Yes, there is no doubt. It’s certainly difficult not to have any answers, reasoning or next steps in place. But the fact that his afp has at least stayed stable these last three weeks feels comforting. We just have to hold on to that and keep faith in what’s to come. This time of year is just so special to us..Georgia’s birthday, Thanksgiving, Nicks birthday, Jude’s birthday and Christmas all fall within nearly a month of each other and we truly just want to mentally backburner the insecurity and enjoy the heck out of this time as a family…and we have been..and will continue to. We have so many reasons to celebrate and feel joy and we are going to let ourselves continue to do just that🧡

I hope that your hearts are filled with so much love and happiness during this special time! We are sending you all so much love and will continue to fill you in when we know more. As always, thank you for your continued prayers and support..you are a true gift to us! Xoxo

Treatment Update

Hello all…hope you’re well and staying warm. Just waiting to head out of NYC and thought I’d shoot you an update…

Nick had a very long day of treatment on Wednesday and the procedure went as well as it could have. The tumor they saw on the scans that they thought might be new is not actually a tumor..we are incredibly grateful for this news! Now this presents the question: “if there isn’t a new tumor, why is nicks afp increasing?”..and while there is no black and white way to answer that, we have to assume it’s one of the remaining tumors that haven’t been treated that are causing it to increase.

Nick was in the procedure for a good 6 hours and his Interventional Radiologist was able to thoroughly map, study and treat him. His IR ended up treating the largest of the remaining tumors. While the scans showed that this tumor was somewhere around 2.5cm..he was able to confirm during treatment that it was actually about 4.5cm. We are hoping and storming the heavens that this is the tumor that is causing Nicks afp to go up..and that the treatment will work to kill that tumor and bring Nicks afp back down. About 90% of the beads his IR used went to tumor, 10% to healthy liver which is a favorable ratio.

For plans…it’s still wait and see. Nick will have bloodwork in about 1-2 weeks and we will go from there. If his afp isn’t down at that time, his medical team want to start moving more quickly and treating the other remaining small tumors, pending he can tolerate it…potentially in 2-3 weeks. If his afp IS down and it’s around 500, it’s sounds like his transplant surgeon really wants to push hard to get him listed. Trying so hard not to get our hopes up too high, but I can’t even imagine the feeling if his afp gets down to where we need it to be after this treatment. We are just so incredibly hopeful.

Nick is feeling well overall, considering what he’s gone thru. It’s been a few days of very little sleep, so he’s exhausted. His site of incision isn’t painful which is great and he’s experiencing very minimal side effects from the treatment. In a nutshell he’s just feeling kind of ishy with headaches that come and go but we feel confident that getting him home and rested up is exactly what he needs.

So many of you have reached out with such care over the last week or so. We can’t thank you enough for your genuine concern and love….it truly is such a big part of what keeps us plugging forward and we are incredibly thankful for that. Sending you warm, cozy hugs…I’ll be in touch! Xo

Scans + Bloodwork Update

We are headed back from a few days in NYC. Will start by saying that we made some unbelievably special memories with the two big kids. What a gift to have them there with us. We are leaving feeling very grateful for this time!

Nick had both scans and bloodwork while there. We met with his transplant surgeon yesterday morning after scans. At that point we didn’t have bloodwork results..but we speculated a lot with him in hopes of Nicks AFP coming back down.

We found out last night that Nicks AFP went up again. Hearing this news felt like an absolute blow to our guts, I’m not going to candy coat it. The fear and worry set in and we gave ourselves the grace to mourn. All of this work that Nick has put in…so much grit…to hear that things aren’t seeming much better with regard to being listed. Heartbreaking.

But we met with his Interventional Radiologist to go over the scans this morning and I think we are both feeling a lot more hopeful after that discussion. As his IR said, this is a very complex, challenging case. He doesn’t want to provide us false hope. But he and Nicks surgeon are committed to this. They won’t stop trying. And we needed to hear that.

According to the scans, the largest tumor remains dead. The second largest one has about 20% remaining alive, 80% dead. So Nicks AFP rising is very confusing because the scans don’t show much change at all with regard to the smaller untreated tumors that are left. This makes it very challenging for them to know what to treat next to get that AFP as low as possible. The Radiologist that read the scans noted that she saw a new tumor but it can’t be confirmed at this point. It won’t be able to be confirmed until they go in for Nicks next treatment. But if there is, in fact, a new tumor, we could assume that is the one causing this rise in AFP.

So, as of now, transplant remains off the table. Nicks AFP is too high to risk going into transplant…the stats show a very high reoccurrence rate if they transplanted him with an AFP this high. We have to continue with treatments in hopes of bringing his AFP back down before they can list him.

So we head back to NYC next week for another round. The board is going to discuss Nicks case and scans in tomorrow’s meeting..but as of now, his IR is thinking it makes the most sense to go in and TACE the smaller tumors. If he gets in there and sees that the one they speculated is new is, indeed, new, he will start with that one..and go from there. He’d love to be able to target at least three tumors this next round, but he just has to go one by one once he’s in there. This will be a very long, complex treatment but Nick is ready. Bless his heart.

While yesterday felt like a hard hit, today is a new day. And tomorrow, and the next. Nicks spirits are so much better today…and as he told the doctor this morning “I’ll lay on the table for as long as I need, I’ll be here every day or every week. I’ll do whatever it takes. I’m all in”.

Although I know you’re already aware of how incredibly brave Nick is, I wish there was a way to show you how amazing it is to watch his strength first hand. He is an absolute warrior and I am proud and mind blown by his faith and grace. As little Rocco would say, “you’ve got this Daddy!”. And he does. He’s had this from the get go. I’ve watched it over and over with my own eyes…and have been fortunate enough to be by his side through it. This is an obstacle, there’s no doubt. But there’s something much greater ahead. I feel it in my soul. We just have to keep at it.

Each visit we leave with the doctors, I think to myself I trust these providers with my whole heart. Yet on the next visit, my heart somehow grows and lets in even more trust. It’s probably getting redundant for you to hear, but these two men and their entire departments have provided us a level of care that I didn’t even know was possible. While they can’t promise us a darn thing, they have given us the gifts of transparency, trust and safety that we can’t imagine doing an ounce of this without. From the late night phone calls and texts, to forgoing a vacation day to treat Nick, to the hugs and open arms they welcomed our children with. I’m grateful for an awful lot in my life, but the gifts these men have given us and the commitment they have to Nick and our family is not something that I will ever stop being paralyzed and humbled by.

To all of you that continue to reach out, pray and and support us…we thank God for you each day. We feel you along side us and continue to keep you close in our hearts. I will be in touch with any updates. Love to each one of you🧡