Post Transplant-Day 2

What a whirlwind these last few days have been. Nicks surgery went well. It was intense…back there for 12 hours…and they finally finished up in the early hours of Sunday. A lot of sorting of his anatomy but they did it. And they did it well.

Nick was progressing incredibly well on his official day 1 post surgery, yesterday. He was off of his breathing tubes quickly, very alert and even got up to walk. Unreal. He was exhausted but his pain was managed well. He even graduated out of the SICU and moved down to the transplant floor where they will care for him for the remainder of our stay.

Early this morning came some major complications. Nick had severe internal bleeding that gave everyone quite the scare. They rushed him back up to SICU and immediately intubated and scoped him to find where the bleeding was coming from and they uncovered a small tear in the lining of his stomach, likely caused from the cardiac scope they had in him during his surgery. They quickly “stapled” this area back to good through the scope and were able to stop the bleeding before it was too late. The fact that these teams were able to take care of this in the manner and timing that they did is not lost on us. Based on what we’ve been told by the staff here, this situation could have had a very different ending, and I can not tell you how grateful we are right now. Continue reading

Surgery Complete

They finished nick last night around 2am..it was a very long and complicated surgery but they did what they set out to do. He is in the icu now and they just took his breathing tubes out and he’s breathing on his own. He’s pretty out of it but is awake…just very exhausted and in a lot of pain. Overall he’s doing well and as they’d hope thus far🙏🏽🧡

It’s here!

We got the call at 4:45am this morning and Nick went back into transplant just a bit ago. I have so much going on in my head and heart, but the words just aren’t following. I will be sure to keep you updated, but if you have a few extra prayers or positive thoughts to spare we will take them. Nick went back there radiating strength, grace and confidence, per usual, and I couldn’t be more proud and full of hope..bless his beautiful, brave heart. Be in touch…much love xoxo

Officially Listed

Hello all…Hope this note finds you well and coming off of a wonderful Valentine’s Day. Thought I’d share what we know as of now with regard to Nick..

Nick is officially on the transplant list! Can you even believe this?! We’ve been waiting for what feels like an eternity to get to this place…he did it. He has come so incredibly far.

Nick had his treatment procedure yesterday and all went well and as expected. His radiologist was successfully able to cover the remains of that “hot” tumor he treated in the last round and was also able to hit one more small one that hasn’t been a big concern/high on the radar, just for precaution. Now, we just wait and pray for a liver to present itself to us. If we haven’t gotten the call in a month or so we may need to go back in and rescan things/discuss another treatment to keep things at bay but as of right now his radiologist doesn’t see anything else he needs to or could treat at this point. Unbelievably positive news. Continue reading

What’s Ahead

Hello! I am going to make this as short and sweet as possible…we’ve been running on no sleep and man that in combination with a rollercoaster of emotions doesn’t make for the best brain function…so I’ll try and spare you:)

Nick has officially been approved by the board to be listed for a liver transplant! He’s checked all of the remaining boxes he needed for approval…his bone and ct scans have both come back showing that the cancer has stayed localized to the liver (and my gracious was that news overwhelmingly beautiful to hear)…and they have successfully treated his tumors to a place where he is considered safe for transplant..his last afp draw was at 336. How absolutely positively incredible. There are a few administrative kinks that need to be worked out and then he will officially be on the list..hopefully in a week or two.

I know what you’re thinking. What’s the timeline here? When will we know when his transplant is? How long will it take for Nick to get a liver? And man wouldn’t I love to be able to answer those questions for you. Really, we are approaching this next step just the same as the last nine months..one day at a time. It could take a few weeks…it could take months. Here’s the tentative plan that could absolutely change at any given point: Continue reading

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 doctors 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. Continue reading

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