PET Scan/Endoscopy Results
December 19, 2019
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
October 2, 2019 ~ nourishedpeach.com
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.
September 11, 2019
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.
First Y90 Treatment Update
July 11, 2019July 11, 2019 ~ https://nourishedpeach.com/
Hello family and friends…hope this update finds you well!
Nick had his first Y90 treatment at Cornell on Tuesday. The treatment procedure went well and as expected..the beads went almost exactly where they showed in the mapping. Nick is feeling ok…he’s beyond exhausted and sore and probably will be for the next week, but no other symptoms of concern at this point which is positive.
We met with the transplant surgeon, Dr Halazun, this morning for a check in. No new developments, just reassurance that we need to keep the focus on treatment to treatment to get the tumors shrunk. He discussed how a living donor is not a likely option at this point. Nick has two aneurysms on top of everything else, and this limits him in doing a living donor transplant for several reasons. It doesn’t mean it is impossible, it just isn’t likely. We discussed the deceased donor route again with him…which would be several months down the road pending the treatments are effective….lots of moving parts with that. Bottom line is that we need to get Nicks AFP, or tumor marker, down so that the board would even consider listing Nick. It’s a point system and is incredibly complicated, so I won’t go into depth. But in a nutshell, we just have to continue to wait and see how the treatments go and how Nicks liver and tumors respond…every plan with regard to a transplant is going to depend on that. And in the meantime these doctors are trying to work angles and paths in any way they can to get us there safely.
Now we head home and hope and pray that the radiation beads do their job in shrinking the first tumor over these next few weeks..and that Nick feels better. If all goes well, we will likely head back here for a second treatment in around 3 weeks to a month….but all of that is up in the air based on the results of the treatment.
While there will be so much uncertainty for some time, one thing we are so certain of is that Nick has the most incredible care team imaginable here at Weill Cornell. Dr Halazun, the surgeon, and Dr Malhotra, the Interventional Radiologist, are two people I can’t even begin to describe to you. They are aggressive, brilliant and innovative. But more than anything, they are remarkable human beings. Their empathy for Nick shows through and through, on so many levels, and I believe it’s because they aren’t far off from Nicks age and place in life as a husband and father. They go out of their way time and time again to check in on Nick and have formed such a special relationship with him. They call in the troops when needed, they make the extra phone calls, and they are so passionate about making sure Nick is connected and set up with every aspect of managing all of this. This relationship seems to be as meaningful to them as it is to Nick and you can so simply see it in the way they light up when they walk in to see him. We went from institution to institution to hear “I’m so sorry, but immunotherapy is your only hope and it may not do much for you” to landing here at Cornell where we’ve heard from these doctors “we will do everything we can to go to bat for you, treat you and get you to transplant because we want you to live”. And they are living out their words. I wish you could all meet them first hand, they are absolute angels.
We are grateful for all of your thoughts and prayers. And to those of you who helped with cleaning services, play dates for the kids and meals while we were away… I just want you to know how much of a difference you are making in our lives..the load you have taken off of my mama shoulders while having to be away is so heavy, and I am forever grateful. To those of you coming to the golf tournament or dinner in honor of our family on Monday…we are looking so forward to seeing your beautiful faces. You lift us so high.
MAPPING UPDATE from Missi Oprish:
July 2, 2019 ~ https://nourishedpeach.com/
We are still at the hospital after a long day, but the treatment mapping and scans are done…Nick is feeling tired but really good overall, and I think we both feel great knowing the plan. He’s just laying down resting right now, we are hoping to be discharged in a few hours.
As I said a few days ago, the mapping was basically a test run of local regional therapy to see how Nick reacts and to help determine which treatment is best-the Y90 radiation or TACE chemotherapy-both directly administered into the tumors through Nicks groin. Nick was a total trooper for the mapping-he did great.
We just got the complete lowdown from the interventional radiologist-he reviewed the mapping results and scans with the transplant surgeon and they are 100% on the same page which is wonderful. They want to treat Nick with Y90. The mapping showed this treatment would be “favorable” for Nick-90% of the radiation beads will go right to his tumor, leaving 10% that could go into his liver-this is a more favorable ratio than we were originally thinking. That being said, that 10% could be enough to tip Nick over into liver failure, but it also may not be enough…we have to take that risk and see.
So Tuesday, July 9th Nick will have his first treatment and they will Y90 his largest tumor. We will have to wait a few weeks after treatment to see how the tumor responds and then go from there. In the interim Nick will be monitored by both the doctors here and the physicians at the University of Minnesota-they will work together very closely. At that point, if Nicks liver responds well and the tumor has shrunk, they will go in and Y90 the 2nd largest one…but one step at a time. All in all we have a plan and are scheduled to move forward…so we are feeling some wonderful clarity.
Friends and Family of the Oprish's,
A few weeks ago Nick was diagnosed with liver cancer. Nick went into the ER with severe stomach pains which led to tests, hospital stays, procedures and scans that detected 3 tumors. Just to go back a little bit, when Nick was 18 he was diagnosed with a cryptogenic cirrhosis, basically a form of liver cirrhosis that they can't tie reasoning to as this wasn’t due to hepatitis or alcohol use. He was getting a physical to play hockey when they discovered his spleen was enlarged and this is what led to his diagnosis. Aside from regular blood work and checkups, Nick's condition has been very simple to manage; he put it on the back burner for years and tried to just live his life.
Now, to get you up to speed on where things are currently. Two weeks ago when Nick was diagnosed with cancer he started testing and care at the University of Minnesota, where Nick has been in the care of liver specialists for years. After receiving his cancer diagnosis he met with GI/Liver Specialists and Oncologists in an effort to see what options he would have for treatment. Now, in a perfect world, Nick would be eligible for a liver transplant here in the US, but unfortunately he is not because of the sizes of his tumors; they are covering over 50% of his liver. He also learned that surgery, radiation and chemotherapy would not be options to him as his liver is too damaged from the cirrhosis to be able to handle those treatments. They talked to him about one option, immunotherapy, that Nick could try with caution as they told him it may cause more harm than benefit. Initially it was quite discouraging.
Nick went down to the Mayo in Rochester, MN on Tuesday, May 14th to meet with a GI Specialist/Hepatologist for a second opinion. They, too, agreed that Nick's liver could not handle surgery, radiation or chemotherapy at this point. They felt that the immunotherapy would at least be worth a shot, though. But they also opened up a new path of hope for him: a possible transplant in Canada. What he learned is that the US has very different guidelines for eligibility of a transplant than Canada does. The University of Toronto is a very well respected institution that is willing to do more “high risk” transplants; the prerequisites being that (1) the patient needs to be fairly asymptomatic and in otherwise good health and (2) the tumors need to fit within a certain criteria, mainly with regard to their aggression of growth. Nick is awaiting the results of a biopsy to determine next steps.
In the midst of all of this darkness, Nick continues to have love and support from his amazing family and friends. As Nick said the other night, “I don’t cry anymore out of fear and sadness, I cry out of gratitude for the people around us”.
Nick is an amazing friend, husband, father and person! He needs our prayers and continued support as he fights this battle. The road to recovery is going to be long. The Oprish family needs our help to ensure Nick can focus on the task at hand. There are various ways to support Nick and his family, a gofundme page, a golf tourney on Monday, July 15th and a meal train that was created to organize meals and cleaning services for their family. Missi, Nick's wife, will continue to update his progress on her website https://nourishedpeach.com/
Thank you for your continued love and support for our friend!
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