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

AFP Results

Well, we finally received the results from the Interventional Radiologist for Nicks AFP (tumor marker)…and I am so relieved to report that the number is down! Nicks AFP was around 1050 three weeks ago, and Friday’s bloodwork is showing its down to 678. The IR feels that his numbers are showing “solid progress”…but also said that sometimes the numbers can be misleading so the MRI scheduled on the 9th will show us where we really stand. All in all, we are taking today as a big fat win!

Just to recap, we need to get Nicks AFP down in order for his case to be even slightly considered for a transplant. In a perfect world, his AFP would be as low as 250…studies show that when patients go to transplant with AFPs above 250, their risk of the cancer reoccurring increases. Nicks transplant surgeon really thinks he could make a case for transplant if we got it down to 500, tho. At least this was his thoughts prior to starting treatment. All of this being said, his AFP isn’t all that matters. We need to see how things look in his MRI. Once the scans are done his team of physicians will be better able to plot out next steps. So SO many moving parts, but today’s news feels so hopeful and positive.

Nick is still feeling pretty darn good…such a champ. Trying to keep as busy as possible in these waiting days and he’s waking up and choosing happiness each and every day, which is such a beautiful thing to witness.

So now we continue to wait until 9/9 scans. Until then, we will keep hope and faith front and center. Thank you all for your constant prayers…we really and truly feel them carrying us along. I will be sure to update you if anything comes up. Enjoy these last days of summer…lots of love to you all! Xoxo

Short Update While We Wait

Just a quick update for those of you asking…

Nicks still feeling well. No pain which we are so grateful for…and his energy levels are still great, all things considered. He continues to get pretty tired, but overall he really is doing awesome. It’s been so nice to be home as a family…we are soaking up these last days before the kids head back to school!

He had bloodwork done on Monday and we received his hepatic lab results…everything’s looking pretty stable with regard to his liver function which is wonderful. We have been trying to wait so patiently for his AFP (tumor marker) results to come back..only to find out last night that the lab didn’t draw for his AFP. He had to go back in this morning for another draw..so we are hoping to have those results next week by Tuesday. Just more time to pray, I suppose:)

As of now Nick is scheduled for scans in NY on 9/9. The bloodwork results along with the scans are what will determine what next steps will be. Things really could go a million different ways, but right now we are so hopeful that his AFP has come down and that his scans are showing improvement.

I will be sure to update you as soon as we get his AFP results back. In the meantime, your prayers and positive thoughts are so very appreciated. We hope that you are all well…sending you many hugs! Xo

Second Treatment Completed

Hi friends and fam. It’s been a good few days in NYC. Here’s the lowdown..

Nick had his second Y90 treatment on Monday. The procedure went as expected and the interventional radiologist, Dr Malhotra, was very pleased with the distribution of the Y90 beads…nearly 100% of them went directly to Nicks second largest tumor. He was able to be a little more aggressive with the dosage because of this…so we are very hopeful. Nick will have bloodwork done back home in two weeks to see how things look. All in all, we are happy with how the treatment went. Nicks not in any pain and walked out of an incredibly long day of treatment like nothing even happened..I’m telling you, he’s a beast;) And while he still has bouts of fatigue, he’s been feeling great ever since. Plenty of energy and in great spirits.

As of Monday morning, pre-second treatment, they saw a slight increase in Nicks afp (tumor marker) in his bloodwork. The doctors consider the number to show things are “staying at bay”, but we were really hoping to see a decrease in that marker. The doctors are hopeful that we see a decrease when he has his bloodwork in two weeks…that will give time for the second treatment to kick in. If we don’t see a decrease, we will reassess with the team of physicians. But as of now, in the meantime, we will just pray away that the beads do their job and bring his afp down.

Nick had his cardiac procedure done on Wednesday and I am so so SO happy to report that all things look good with his heart. They were concerned that they saw increased pressure in his pulmonary valve through an echocardiogram that was done over a month ago..but we can rest assured that his pressure looks perfect now. The interventional cardiologist said Nicks mechanics and function look great..and we are thanking our lucky stars for this. Such a relief, as any abnormalities or complications with his heart could greatly affect transplant being an option down the road.

We were supposed to meet with Dr Halazun, the transplant surgeon, this morning but he called Nick first thing and said he was unable to meet as he had an emergency transplant to do. He and Nick had a great talk, tho. Dr Halazun spoke with the interventional cardiologist immediately after Nicks procedure on Wednesday and is elated that the heart tests came back favorable-i think he was as worried as we were:) With regard to Nicks afp, he thinks we will have a better idea of how things are looking after bloodwork in two weeks. He and Nicks interventional radiologist both agree that scans should be done in a month or so to see how things are looking..so they will work together to map that out for us.

All in all, the week went well with very minimal hiccups. The days were very long, but it certainly didn’t feel all that bad considering we were constantly surrounded by the most uplifting, kind, wonderful care teams. Not only the doctors…but the nurses and staff are really starting to feel like family at this point. They always welcome us back with such open arms and make us feel so loved. It’s been such a pleasure getting to know these people..it’s really amazing the bond you can create in these types of environments. Special isn’t the right description, but it’s all I can come up with at the moment. So incredibly special.

Back home I’m pretty sure the kids had the best week of their lives. My sister came from Omaha with her three kiddos to stay with them and I’m not so sure they even missed us for a second! My sister from St Paul and nephew spent a little time with them too…so we can probably chalk this week up as being their best week of summer. My heart is so grateful…it is so much easier to leave knowing the joy the are experiencing while we are gone. The best❤️

So now we head back home and get back to business as usual; trying our best to keep Nick healthy and feeling well, family time, and as much “normal life” as we can possibly experience. We will be praying fiercely for positive lab results in a couple weeks, but we are not going to let that worry stop us from enjoying the days ahead..way too much to be grateful for at this point.

As always, thank you for your continued calls, texts, prayers, thoughts, kindness…all of it…we feel so blessed to have you all on this journey with us. Sending you all the love…and Ill be sure to keep you informed as anything arises. Xoxo

Ps I’ve heard “i feel bad asking” so much lately, you guys…and that’s not good! If you have any questions about Nick, the processes, the doctors, anything, please feel free to ask…we are happy to help answer any questions at all. After all, you are a part of this, too…we are taking you along with us in our hearts every step of the way❤️