Kelsey Dellino

OCTOBER 22 UPDATE: REMEMBERING KELSEY ❤️ It's with an incredibly heavy heart that I share that my beautiful wife, Kelsey, passed away peacefully this morning, October 22, surrounded by her family and so much love. After more than two years of fighting stage 4 lung cancer, her body simply couldn't keep going. As much as we knew this moment was coming, nothing could have prepared us for actually losing her. We spent her final days together as a family, making sure she was comfortable, loved, and never alone. I'm incredibly grateful for that time, even though I would give anything to have more of it. Kelsey was my best friend, my partner, the love of my life, and an incredible mom to our four boys. The reality of navigating life without her is something we're still trying to process. I also want to take a moment to thank everyone who has supported Kelsey and our family throughout this journey. The generosity, kindness, messages, and love we've received have been overwhelming in the best possible way. You've helped us through some incredibly difficult times, and I hope you know how much that means to us. Right now, my focus is on our boys and taking things one day at a time. We plan to hold a celebration of life for Kelsey at a later date and will share details once we have them. We want everyone who loved her to have an opportunity to come together and celebrate her. Thank you for loving Kelsey, for following her journey, and for continuing to support our family. We're incredibly grateful. I love you the most, baby. Always. ❤️ Tony

Hi everyone, Tony here with an update on Kelsey. After more than two years of fighting stage 4 lung cancer, things have taken a significant turn. Late last week, her doctors told us that her time is extremely limited, likely just days to a week or so. We’ve now transitioned Kelsey to a hospice facility, where the focus is on keeping her comfortable and allowing her to spend her remaining time in peace, surrounded by her boys and close family. I’ll be staying by her side indefinitely. This has been incredibly difficult for our entire family, especially the boys, her parents, and her sister. We’re trying to take things one day at a time and make the most of the time we have together. Throughout Kelsey’s journey, so many of you have shown up for her and our family. I continue to receive messages, memories, and reminders of the lives she’s touched. It’s humbling and awe-inspiring to see just how much she means to so many people. I wish she could fully see the love being sent her way. Thank you for every donation, message, share, and act of kindness. We’re incredibly grateful. The generosity and support we’ve received throughout Kelsey’s journey have meant so much to our family. Every donation, message, and act of kindness has made a difference, and we’re incredibly grateful to have so many people continuing to show up for us during this difficult time. Thank you for loving Kelsey, being part of her journey, and continuing to support our family through this. We will never forget it. TD

- AUGUST 29th UPDATE: A NEW NORMAL - Well folks… I’ve been quiet for a little while because, honestly, the last month has been A LOT. I’m writing to you now from the UWMC ICU to manage my pain until I get a shunt put in on Monday. A shunt will be a sort of pressure relief valve that goes in my brain to my abdomen. Hopefully it helps relief the mini seizure episodes I have. Still waiting on all details but there is swelling in my brain, fluid on my brain and small hemorrhages. When I wrote my last update, I was heading into 10 rounds of cranial spinal proton radiation for my leptomeningeal disease (LMD), and I was about to head to Maui with my family before treatment started. I just finished running a 5k in honor of my body allowing me to then also did the FH Obliteride 5k walk. But I will say, the soreness of this event really took me out!! But damn, I was proud :) I’ve now finished all 10 rounds of brain/spine radiation - while I’m incredibly grateful that I was able to receive this treatment, I’m not going to sugarcoat it… my body has been through the wringer. LET’S CATCH UP: • I completed all 10 rounds of cranial spinal proton radiation for my LMD. • I’ve been dealing with a whole new collection of side effects. • My cancer is still progressing in other areas of my body. • We’re now having some very serious conversations about what treatment options we have left. • And I’ve had some new neurological symptoms that have added another layer to everything. THE RADIATION: The goal of the proton radiation was to attack the cancer that had spread into my brain and spinal fluid. It was 10 treatments covering my brain and spine, and I am SO glad I got through all of them. But radiation doesn’t exactly leave you feeling like a million bucks. The fatigue has been next level. My body feels heavy and weak, and things that used to be simple take a lot more effort. My headaches have continued, and I’ve had more pressure in my head. I’ve also had some episodes that we think may be mini seizures, which is obviously pretty terrifying. And then there are the more visible changes. My hair has fallen out. I’ve gained weight. My strength and mobility have changed. I don’t move through the world the same way I did a few months ago. It’s weird to look at yourself and realize how much your body has changed. I’m still me. But not recognizable in so many ways. THE CANCER: Unfortunately, while we were treating my brain and spine, the rest of my cancer did not exactly get the memo to chill out. My recent scans showed that my lung cancer has started growing again, and there are new lesions in my liver. The good news is that my known bone metastases appear stable on the scans. But honestly, “stable bones” doesn’t necessarily feel like a win when I’m experiencing so much pain, weakness and loss of mobility. A lot of what I’m feeling right now is the cumulative effect of cancer + radiation + everything my body has been through. And that brings us to… WHAT’S NEXT? This is where things get complicated. We are running out of easy options. The treatment we had originally hoped to use, amivantamab (Ami), has been a battle with insurance. And now, because my cancer is progressing, we’re looking at chemotherapy as another option. The current possibilities we’re discussing are amivantamab and/or carboplatin + pemetrexed. None of these options are exactly what I had hoped I’d be doing at this point in my life. But I’m learning that cancer treatment isn’t always about finding the perfect option. Sometimes it’s about finding the option that gives you the best chance of more time while trying to preserve as much quality of life as possible. And that is a VERY important distinction for me right now. I don’t just want more days. I want GOOD days. THE HEAD PRESSURE: One of the biggest things we’re dealing with right now is pressure in my head. Because of the LMD, I developed communicating hydrocephalus, which basically means the cancer has interfered with the normal flow and absorption of spinal fluid, causing fluid to build up and pressure to increase. That pressure has been causing headaches and other neurological symptoms, and it’s another thing we need to address. Steroids have become part of the picture to help with inflammation and swelling. And now we’re talking about a SHUNT. A VP shunt is a device that can drain excess spinal fluid from the brain into the abdomen, hopefully relieving some of that pressure. It’s kind of wild to think that we are now discussing brain surgery as part of my treatment plan. But here we are. SELF-ADVOCATING: One thing I’ve learned through all of this is that you have to advocate for yourself. You have to ask questions. You have to push when something doesn’t feel right. You have to make the phone calls, send the messages, ask for second opinions, challenge insurance decisions and make sure everyone understands what YOU want out of your treatment. I’m incredibly grateful for my medical team, but at the end of the day, nobody knows my body better than I do. And I’m learning to trust myself when I know something has changed. A NEW DAY IN THE LIFE: One of the biggest changes since my last update is what a “normal day” looks like for me now. A few months ago, my to-do list might have looked like: ☑️ Work out ☑️ Take the kids somewhere ☑️ Run errands ☑️ Clean the house ☑️ Make dinner ☑️ Hang out with friends Now? My goal list looks more like: ☑️ Shower ☑️ Get dressed ☑️ Eat something ☑️ Take my medications ☑️ Get outside ☑️ Move my body if I can ☑️ Spend time with my kids ☑️ Talk to my husband ☑️ Rest when my body tells me to ☑️ Make it through the day without feeling like cancer stole the whole thing And honestly? Those things count. I’m learning that productivity looks VERY different when your body is fighting for its life. Sometimes the win is taking a shower. Sometimes the win is getting outside. Sometimes the win is sitting on the couch with my kids and watching a movie. And sometimes the biggest win is simply waking up and deciding that I’m going to participate in my own life today. WHERE WE ARE NOW: I wish I had a more hopeful, tidy ending to this update. The reality is that my cancer is progressing. My treatment options are becoming more limited. My body is weaker than it was. And my prognosis remains something that is difficult to talk about, but impossible to ignore. I’m scared. I’m sad. I’m angry. I’m also incredibly grateful. Because somehow, even in the middle of all of this, there is still so much life happening. My kids still make me laugh. My husband still makes me feel loved. My friends still show up. There are still moments that feel completely normal, and those moments mean more to me than they ever did before. So for now, we keep going. We figure out the shunt. We figure out the next treatment. We keep asking questions. We keep fighting for the best quality of life possible. And we keep making memories. Because my goal isn’t to spend whatever time I have left sitting around waiting for the next scan, the next treatment, or the next piece of bad news. I want to LIVE in the time I have. Even if living looks a little different these days. Thank you for continuing to follow along, support us, check in, donate, send messages, pray, think of me, bring meals, love on my kids, and remind me that I’m not doing this alone. I feel that love. Every single day. KD