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🧡

Honoring St Jude

No real update to share, you guys. Just feeling like writing as my heart is so touched today.

This morning we celebrated (a few days early) All Saints Day at Georgia and Jude’s school. It’s a special day at their school for many reasons and is celebrated with so much tradition. Each year, the kindergarten class prepares this mass with the help of their eighth grade “buddies”. The kindergarteners work with their buddies to research and learn about a saint that they have chosen, and they get to make crowns and costumes and parade through a very special mass honoring those saints. It is such a sweet, precious, joyful celebration. This year was Jude’s turn as a kindergartener and as you might guess, Jude chose St Jude Thaddeus.

For as long as I can remember, even before I met Nick, I hoped to have a boy someday and name him Jude. I have always loved that name and the meaning behind it….St Jude has always been my favorite Saint. He exemplified the meaning of hope. Faith in lost causes. And even miracles. So when we found out we were pregnant with a baby boy six years ago, there was no question of what his name was going to be. No other names in the running…he was Jude.

And each year on All Saints Day, I have reflected and celebrated extra that we got to give our son that name. That we chose it for him because of what it meant and the beauty behind it. But this year, as we celebrate and approach All Saints Day, it feels different. It feels like I didn’t really choose that name at all. It feels like God very strategically placed that name in my heart many years ago for His own reasons. Because He knew we would need that name in our family. That we would need a constant reminder that when our hearts feel a little emptier than usual, or the road feels a little more rocky, we can remember St Jude and the hope he can provide our hearts. What a beautiful thing. Our little Judebug is a living, breathing, walking reminder, whenever we need it. What special boy❤️

Here is the sweetest video of Fr Kevin talking with a few of the kindergarteners at mass today. Seeing Jude stand up in front of the entire school and congregation and so confidently say his name and the word HOPE did something to my heart I just can’t explain. The timing of all of this seems like no coincidence to me. It feels so purposeful and bares more meaning to me then I can possibly translate.

Aside from feeling tired, Nick continues to feel great. We leave on Sunday for New York for scans and we are taking Georgia and Jude with us this time. It’s something we’ve been talking about for months and we feel it will be so special to show them our life when we are there and to include them in the process. We are looking so forward to the time together. And as we prepare to leave, I am praying extra hard to St Jude. To fill us with hope and healing. And provide us with the faith to keep walking forward, trustfully. If you’d like to join me in prayer, it would mean so incredibly much. I will be sure to keep you updated as we learn new information. Sending you lots of love! Xo

Blood Work Update

Hello all!

We just spoke with Nicks IR about the results from the bloodwork Nick had done on Tuesday. Nicks AFP, or tumor marker, is back up from 520 to 645.

Not the news we were hoping to hear. His IR speculated quite a bit and also noted that he has a very hard time believing that these numbers are a true reflection of what’s going on internally for Nick. He spoke with several of his colleagues and feels very strongly that this number could be a reflection of inflammation and tumor dying and releasing AFP into the bloodstream. We are desperately hoping this is the case. He said often times patients don’t get bloodwork done until one month post treatment for this very reason…so we need to allow a few more weeks and reassess. He doesn’t want to mislead us in any way, but in his heart he truly believes this could be the case.

Other possible reasonings for this rise in AFP could be new disease or current disease going from a passive to a more aggressive state.

Nick will have scans and more bloodwork done on 11/4 and that will give us a true read on what’s going on and what next steps will be.

With this news brings a lot of emotions, but overall I think Nick continues to stay optimistic, and I do too. He physically feels excellent and looks great which alleviates some of the worry. Hope is still strong within us.

In the meantime, I will let you know if anything comes up. And as always..we appreciate your kind thoughts and prayers more than we can say…and would be so grateful if you keep them coming! Xo

Treatment #3

Hi friends and fam…I hope this note finds you all well! We are on a flight back home from a couple days in NYC..thought I’d update you.

Nick had his TACE treatment on Monday. The procedure went well and based on imaging, his Interventional Radiologist is very pleased with the placement of the beads. He felt he was able to target the first tumors remains right where he hoped to, so that is wonderful news.

Nick did great and is feeling pretty good, all things considered. The difference in potential side effects between this TACE treatment vs the Y90 he’s had the other two times isn’t much…fatigue, potential pain at the site of incision or site of the tumors, and low grade fever are all possible side effects. The difference is that this TACE treatment works very quickly, like within days, to kill tumor whereas the Y90 works over weeks or months, even. Nick has felt a little pain on and off in his liver over the last couple days which his IR warned us of…and hopefully that is him feeling tumor death. He’s also been tired..all to be expected. He says it’s nothing unmanageable and his IR says these symptoms should subside within a week. In my opinion he seems to be doing wonderfully post treatment and it will be good for him to get back home so he can rest and sleep in our own cozy bed:)

We had some great chats with both Nicks Interventional Radiologist and Transplant Surgeon. There’s really nothing crazy new for me to share…but they are both just very happy with the way Nick has been responding to treatments. We talked about a ton of “what if’s” and what it all boils down to is that this could all go a million different ways. There are an insane amount of possible scenarios that could play out and our plans will have to stay bloodwork to bloodwork, scan to scan and phone call to phone call. They really think that this last treatment has the potential to get Nick to a place where they could get him listed for transplant…and my gosh we hope and pray that’s the case. We won’t know anything until bloodwork in two weeks and scans in about a month.

Our discussions included how long this process could take, or how quickly and urgently it could all go. How a deceased imperfect liver is something we may have to consider, or how a living donor option could miraculously be brought back on the table. Logistics, best case scenarios and worst case ones, too. What would happen if we got the call and had to be there in 4 hours or we lose a liver, what would we do with the kids, where would we stay, how would we possibly manage this all. We talked enough to make our heads spin, but at the end of the day we are leaving with one concrete plan: day by day.

Nick reminded me on Monday, right before his treatment procedure, that it was exactly 5 months on the nose from the moment he was diagnosed. While we don’t know how five months can possibly pass by so quickly, we have experienced and learned so much over this time. And one thing we’ve gotten really good at is trusting the process, and Nicks medical team. We don’t have any concrete answers. We don’t have a set plan. We have no idea what life will look like next month, in six months or six years. But we know Nick feels good today. We know we have the most incredible care team who is whole heartedly devoted to standing up for Nick and holding our hands through every step of this. And we have all of your love, prayers and support. I’d say we are in pretty good shape, you guys. Nick and I promised each other we’d live these next five months like we’ve lived the last five: faithful, trusting and as contently as we are able. And do you know who’s been our greatest teachers and encouragers of this? Our beautiful, patient kiddos. Boy have they been incredible these last five months ❤️

So, that’s it. The ball is still rolling. We still have more waiting to do. Nicks still the biggest champ in the world. And we still have an awful lot of hope and gratitude. All such good things! I will absolutely let you know if anything comes up and will update you in a couple weeks when we get bloodwork results.

We hope you are all having a wonderful start to fall. While it’s probably starting to sound redundant, I won’t ever stop thanking you all for your care and concern. Your hearts have totally blessed ours in so many ways. Sending you so much love! Xo

AFP Update

Just a quick check in for all of my fellow number junkies:) We got word today that Nicks bloodwork from last week is showing that his AFP has dropped down to 520! It’s down another 150! And while I’m no expert, this leads us all to believe that the Y90 beads are still working on those tumors. This is incredible news!

I know I’ve told you this before, but Nicks transplant surgeon told us a few months back that he feels if we could get Nicks AFP down to 500 he would have a case to present to the board for Nick with regard to getting listed for a transplant. Going into transplant, an AFP of 250 or less is ideal for many reasons, but his surgeon felt that if he was down around 500 and able to prove that Nick is responding to treatment he could at least have some ground to stand on in his conviction to get Nick listed.

As of now, none of our plan is changing. They will still treat Nick on the 30th and then likely do scans again around a month after. When we are out there for his treatment we will chat with his transplant surgeon and get a better feel for his thoughts on Nick getting listed, pending his AFP stays in check.

Big win today, in my opinion. Seeing his AFP continue to drop is such beautiful news! We will sit tight until the 30th and continue to make sure Nick is taking wonderful care of himself. Keep you posted if anything comes up:) So much love to you all xoxo

Scan Results

Hello, all! Wanted to share an update as Nick had his scans on Monday. The tumor board, which includes his interventional radiologist and transplant surgeon among many others, have reviewed them and we’ve talked through the results. As you know, just to recap, Nick has five tumors on his liver. Two are very large and are taking up the bulk of the masses. Nick has had two Y90 treatments thus far..one for each of the two largest tumors (which are not too different in size). Here what we know…

The first tumor they treated is definitely damaged, but not gone. If you recall, this was the treatment they weren’t able to be too aggressive with as the pathway they have to get into that tumor wasn’t a straight shot..therefore, some of the beads went to his tumor, and some into his liver which was why they couldn’t be too aggressive..they didn’t want to do too much damage to his liver and send him into severe failure.

The second tumor they treated is appearing to be completely dead. DEAD. I can’t even believe I get to say those words to you! As you know, this was his second treatment, and this was the treatment that allowed them to be more aggressive because the beads all went directly to tumor. While they can’t completely confirm that this tumor is 100% dead, then can confidently say that they have done tremendous damage and that there is no more tumor there left to target. This is incredibly positive news!

And now for next steps. On 9/30 they are going to go back in and treat the 1st tumor again with TACE. As you probably remember, there are two options of local regional therapy for them to give Nick..Y90 (radiation) which is what he’s had twice, and TACE (chemotherapy) which is what he will be having on the 30th. Same procedure for Nick and both treatments block the blood flow to the tumor. The difference is that once the blood flow is blocked, Y90 keeps radioactive particles around the tumor to kill it and TACE keeps chemotherapy drugs around it. Nicks radiologist is confident that this is the right next step; they’ve already tried Y90 and the TACE procedure will allow him to go in and target many different remnants of the tumor vs a straight shot into the middle of it. We are 100% on board.

As of right now, Nicks AFP is reflective of what the scans are showing. His AFP went from 1050 down to 678…and his scans are showing that about 35% of the total tumors have been killed. Our goal is to shrink his tumors and get his AFP down further so that we have a solid case for him to be listed for a transplant. The doctors feel that if we can get that first tumor killed, we will likely be close to where we need to be.

As the doctors told us, the stars still need to align with everything. We have a ton of steps ahead of us, but we will keeping picking away at this in the most strategic, smart, safe way possible. We are currently filled with more hope than ever and we are celebrating this step in the right direction…it is so uplifting! Nick is feeling awesome..and he looks so good too. Hearing the scan results and having next steps in place feels so incredibly good. Nick is so full of gratitude and joy…and truly, there aren’t words to describe how I’m feeling. I am just on-my-knees thankful. Beyond measure.

Thank you all for the prayers and positive thoughts…we truly can’t imagine going through any of this without your love and care. Hope you are having a great start to fall…sending you giant, celebratory hugs! Xo