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 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 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 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🧡

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