Josh's story, by his wife, Holly
How did We get here? We battled cancer for nearly 4 years, but there was no happy ending for Us. I say We and Us because regardless if one of Us is in Heaven, while the other carries on here on Earth, We are forever Us. We all have dates in our lives that we can easily recall, that we don't need to be reminded of by a calendar, or a Facebook Memory. This is how Cancer led Us here.
Friday, December 21, 2012 I'm wrapping gifts 4 days before Christmas because I always put everything off until the last minute. The phone rang, it was his number. I remember being so annoyed because it was after 7:00pm, and he wasn't home to help get this stuff done. He was always a quiet guy, but something was different in his voice. "Where are you?" "I'm leaving Urgent Care now." "Well did they take your nasty nail off?" "No she said she'd rather not because she thinks it could be cancer." "Shut up Josh!" "Serious Babe." "Just come home." And then I did what you're not supposed to do, I googled cancer in the thumb nail. There it was, as if I were staring right at his thumb, I knew, I felt it in my bones. The next few days and weeks felt like a blur, like we were living another life. We celebrated Christmas, we criss crossed Maryland to dermatologists, biopsies were done, cancer was confirmed, we met with an Oncologist, heard "It's no big deal," met with another Oncologist, lab work done, had a surgical consult, and scheduled his surgery.
Thursday, January 31, 2013 Josh had his left thumb amputated. Then it was clean margins, no lymph node involvement, "We got it guys, but just in case let's do some preventative treatment, here are your options." We felt amazing, we felt lucky to have gone head to head with cancer and won! All scans were clear, labs were great, treatments began, he was doing wonderful, and always smiling with that half grin of his. Eventually his body began rejecting the Sylatrone, "But it's ok" the Oncologst said, "That just means his body is strong enough." We thought we were good, we went back to living, back to our family before cancer, back to baseball, softball and soccer. We took our kids to the beach, to Disney, we celebrated milestones, and birthdays.
Tuesday, November 4, 2015 The day before our son’s birthday, "Hey guys we found something on this scan in your right lung, but we're going to get it, and we're already consulting with the surgical team." Josh left for Kentucky the next day for his dream hunt and I got the call. "Holly, this is Michelle... it's cancer." December came and here we go, kissed the kids goodbye when they were still sleeping, surgery day again, surgery was a success, clean margins, no lymph node involvement, "We got it guys, but again let's try a new Immunotherapy called Yervoy just as a precaution." Treatment started, horrible headaches, his body started rejecting treatment again, his pituitary gland swelled, now a steroid regimen, but the scans were clean, and we think... We're good... again.
Friday, July 1, 2016 "Babe I can't feel my right side, my face is numb, something's wrong." "Ms. Horst... your husband has a bleed in his brain caused by a tumor in his left frontal lobe." Back to Baltimore, emergency surgery, "We got it all and he did great," this time Opdivo was the preventative treatment of choice, treatment 1, treatment 2, scans are clean, physical therapy 3 times a week, "Babe look I can open my hand," "Yay Babe do it again so I can video it, I'm so proud of you Josh," and we thought once more we had beat the odds.
Saturday, October 8, 2016 "Babe I can't see." And then came Wednesday, October 12, 2016 "Josh we're so sorry, but the scans show you have a rare condition known as Meningeal Melanomatosis," there were cancer cells in his spinal fluid, and it was time for the treatment they had been holding on to as a "just in case." Seizures started in the middle of the night, 911 was called twice in two weeks, he slept next to me in our bed for the last time, he was airlifted to Baltimore, in and out of the hospital, now he's forgetting who we are, were he is, he was burning up, he slept so much, he kissed the kids for the last time on a Monday, back to Baltimore, couldn't feed himself, I held his hand always, and the scans got worse. November 17, 2016 He turned 32 and that night chaos, "Mrs. Horst he's in shock, we have to put the breathing tube in now, he might not come off of it." Then came November 18, 2016 "We're so sorry, Josh is at the end of his life, he's not going to come out of this." I remember the doctors sounding like a broken record, I actually yelled at them, I told them to "Stop saying that," but they repeated it again, "There's nothing more we can do, we've tried everything, and you all have fought harder than anyone we've ever seen." Nick (had just turned 12), Shelby (would be turning 9 in a week and a half). "Mommy has to tell you guys something come sit with me. Daddy was too sick and the doctors tried everything they could, but they couldn't fix it. Daddy and I love you both so much, but Daddy can't come home. God needs him in Heaven now."
Saturday, November 19, 2016 My best friend, my husband, Nick & Shelby's dad, Clarence and Rebas son, Sherry & Sheenas brother, Alvin and Elvas grandson, a nephew to Clair/Carl/Clark/Elaine/Ellen/and Erma, a son-in-law to Richard and Wanda... gone. I Picked out our plots, his clothes, we planned his funeral, we wrote letters to him and tucked them inside the pockets of his jeans, Nick wanted him to have his shell casing, we buried him in his home town on my birthday, we didn't want to leave him, and I said, “See You When I See You Babe”. 1 Month, Christmas without him, 2 Months, 3, 4, 5, 6, 7, Nick hit his first home run, 8, 9, our first family vacation without him, 10, a new school year begins, 11, 12 Months without him, Nick turns 13, Josh's birthday still comes, one year since he's been gone, then my birthday, and Shelby turns 10. How did we survive a year without him? He wasn't here to see Nick's homerun, to see Shelby ride her bike, and it's only been 365 days. How do we survive countless years without him? "Mommy I miss Daddy." "Mommy I wish Daddy was here." "Do you remember when Dad would say this, when Dad would do this?" We remember him every second of every day, we speak his name in every conversation, and we carry him with us always.
Friday, May 4, 2018 I was scrolling through Facebook when I should have been working, and I read Melanoma Leaves a Mark - but not always the one you think. I cried reading how another family full of hopes and dreams, with children close in age to our children, shared the same unfortunate tragedy of losing their dad, her husband, their best friend to Melanoma. I thought... Look at them, what they've turned their tragedy into, this is amazing, I feel like I need to thank them for keeping the fight going even though a huge piece of their heart is missing. This mission we share to cure the cancer that's forever changed their lives, our lives, and the lives of so many other families. And that's how we got here.
Big Orange Foundation... you're absolutely amazing, and such an inspiration. You didn't allow this tragedy to defeat you, and you've selflessly continued the fight for the sake of others. I truly believe that your continued efforts to raise awareness and funding for Melanoma research somehow allowed us more time with Josh. The amount of treatments for Melanoma is ever growing, and it's because of foundations like this. Our brave Warriors were called home by our God to serve alongside him, and we must now carry on the fight for them and for all others until Melanoma is cured.
I initially said, “We are forever Us”. I struggle so much knowing that a huge piece of my heart is missing until the day comes that I see him again. I find it ironic that he passed on the 19th, and yet the following verse has always given me comfort... Have I not commanded you? Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9 The best advise that I can give from our family to all those still fighting is this... Be Brave... Always.
- Holly Horst