Survivor Stories: 2020

Survivor Stories: 2020

Hope Collins // First Time Mom // CSPA Board Member // Lost Father to Colon Cancer in 1991 // Born and raised in South Carolina // Clemson Fan // Boykin Spaniel Owner // Yogi // Life Motto – “The best view comes after the hardest climb”

Interview by Deb Spear, Photograph by Patrick Cox

My dad grew up in a very small town called Islandton, SC.  You can see the house that my grandfather grew up in from their front porch.  He had a quintessential country childhood.  [He] went to Clemson and met my mom there.  They fell in love and got married right out of college and had my older sister.  Her name is Mandy.  The night she was born my dad was sick as a dog.  He was showing signs that he had cancer.  They didn’t know it because it was colon cancer; they thought maybe it was ulcers or different things. They just thought, “You’re thirty.  There’s no way that could happen to you.”

My sister was born in April and by July of that year he was diagnosed.   He went right into chemo and different treatments but it was kind of too late.  I don’t know where it had spread but it was to that point where they had to be very aggressive with his treatment.  So he’s a new dad, still fairly new husband, very stressful times for them.  They were living in Columbia. My grandparents and my mom’s parents were very involved, just trying to keep everything as normal as possible.

Mandy was born in 1988 and then I was born in 1990 in May, almost two years apart.  He went through a lot of treatment, about four rounds of it.  They were told by their doctors that even if he did survive, he wouldn’t be able to have any more children just based on the treatments that he had.  So somehow I am truly a miracle.  I was a complete surprise.

My name is actually Lauren Hope. That was because they just couldn’t figure out how to make Hope a first name.  It was his choice to name me that because he hoped he would live to see me grow up.  But unfortunately that was not the case for him.    He died in October and my birthday is in May.  I think I was a year and a half, so I don’t really have any memories of him.  My sister has very few, because she was about three year old at that point, maybe three and a half.

I give my mom a lot of credit.    In first grade, we had to write why our family was special. It was a drawing of a family of four – me, my mom, my step-dad, my sister – and an angel in heaven.  I wrote that I was special because I have two dads.  One is in heaven and the other is at home with me.  We talked about my dad, my biological father, so growing up we were able to have a great relationship with my grandparents and my aunt. I know she cared deeply about my grandparents.  I’m sure it made her feel connected to her husband even though she was happily married to my [step]dad.

They met on a blind date.  He wasn’t really interested in going on this date.  He was just trying to get someone at work off his back.  He opened the door and said, “This is dinner, movie and adult conversation and that’s it.”  Thankfully he went; they enjoyed it; they got married when I was five years old.  He adopted us and raised us as his own.  He never expected us to call him Dad, but it was just a natural thing.  (If he disciplined us, he was Gary.)   So when I say “my dad,” I have stepdad that I consider to be my father.  He’s been a great support.

My mom had a lot of health issues herself.  [She died in 2010]  I wish that someone would have been more forceful in my family to say, “We all need to go talk through this.” I didn’t get any therapy until I was in college.  I think that more people should take advantage of it.  Having support to talk things through, whether that’s family members to better understand, or a therapist, you’ve got to let people in to help you.  You have to be open to it.

One of my really good friends is having some issues with a family member having alcohol issues.  I was like, “Well, this is nothing.”  But it wasn’t fair for me to dismiss the challenges they were facing as a family.  Their struggles are just different from ours.  But you do find yourself in that, “My pain is more difficult.  This road has been harder for me.”  I know that I’ve done that before.  I try to get over it but . . .

I would definitely say that family is very important to me.  While I say that we’re not all great about talking about things all the time or what we’re feeling about things, we’ve always felt like family first and that we’ve got to be there for each other. I married a Damn Yankee from Connecticut, the most normal human being and family in the world.  No divorce in their family, no tragedy. We met at Clemson.  I love that parallel story.  My husband is a huge support for me.  While he wasn’t around, he never had a chance to meet my mom or my dad, he’s such a strong person.  He takes on that grief and those challenges that I’m facing.  He’s the biggest cheerleader.  I so appreciate that.

Last year at Thanksgiving we were just starting on that IVF journey.  It’s really wonderful to be where we are this year versus last year when we were really struggling.  Different obstacles that we faced last year, while it felt like a delay, were really an opportunity for us to grow as a couple.

I was talking with my grandmother about it. She’s very supportive in our journey to have children. I was struggling with that — am I not able to have a baby because my dad went through chemotherapy?  I just worry and worry and worry. She is really one of the strongest people that I know. I live it but she breathes it, and that is how she gets through things. She’s found a way to use it for good in her life and help others.  My dad’s younger brother passed away when they were in middle school.  So she’s lost two children way too young, but she says that God doesn’t make mistakes and you just have to hold onto faith and hope.  It’s such a sad thing.  Of course she wishes her children were here but I believe it too, that He doesn’t make mistakes and we just have to keep faith in it and hold onto that, that there’s purpose in loss and a lot of growth results.

I think it’s been a real blessing that my name has been Hope.  It’s a great way I can keep his memory alive.  I talked to my grandmother yesterday. I’ve been able to take her to the park and we’ve honored his memory with a plaque.  She’s been able to walk through that park and she’s getting to see my service on the board.  Even though I didn’t have a really long relationship with him, I’m keeping his memory alive.  I know that that means a lot to her, that he’s stilI there in some way.

I think it’s a beautiful thing that Kay [Cancer Survivors Park Alliance director] wants to honor our baby.  Her name is Liddy.  I know my dad would love her.  He does, and he’s one of those people who knew she was going to be here before we knew she was.  The due date is January 21 and we are excited about that.  There’s so much hope in that.  I do wish my dad was here to meet her, but he’s going to be an angel for her, her whole life.

58 years old // Physician // CSPA Board Vice President // Diagnosed with Adenoid Cystic Carcinoma of the trachea, October 2017 // Born and raised outside of Cincinnati, Ohio // Air Force veteran // Animal and Children lover – how you treat them says everything about you // Paying it Forward is the way we should all strive to live

Steven Samoya spent decades – literally – studying and training to become an accomplished, double board-certified adult and pediatric anesthesiologist.  He was good at it, too. From running up and down the hospital corridors between patients, to comforting the kids he was treating and helping the parents remain strong, to collaborating with his colleagues on the tough cases – he could handle it all.

It was a long, hard road to get to where he was in his career, but it’s what he loved to do.

Then, it all came to a crashing halt.

In October 2017, Steven was diagnosed with Adenoid Cystic Carcinoma (ACC) of the Trachea, a rare cancer in an extremely rare location.

“I went from a very active person, who could go days without sleep and work a job that I spent half my life attaining, and loving pretty much every minute of it, to someone who needs to sleep at least 10 hours a day.  It’s been a total 180.”

Several months before, Steven started having shortness of breath and night sweats, then a weird, light rattle in his head when he exhaled. His doctor couldn’t hear the rattle and a chest x-ray revealed nothing.  Some anxiety medicine and an inhaler was prescribed, but the rattling continued and was getting worse.  Being a trained doctor, Steven decided that he needed a CT scan to see if that could get to the bottom of the issue.

He was already scheduled to see his pulmonologist, who was also a friend, in a couple of days regarding a follow-up plan on the inhaler, but a day after the CT scan, his lung doctor called urgently.

“I vividly remember him calling me the next day telling me there is something in my airway.  So, instead of a friendly visit on Wednesday to review what our next plan would be, I had to have an “urgent” bronchoscopy and biopsies.  I was also shown the photos of a large tumor in my trachea nearly blocking the entire left lung, and I was informed how rare this cancer was.”

So rare, in fact, that when it came to looking where he should go for treatment, few hospitals would even agree to accept him as a patient because most simply did not have the doctors that were versed in this type of cancer.

However, Harvard’s Dr. Cameron Wright is one of the few world experts in ACC, so Massachusetts General agreed to accept him (he was only the 31st ACC patient in Dr. Wright’s 40 plus years of practice), and surgery was quickly scheduled. In what was an extremely delicate, complicated and dangerous surgery, Dr. Wright and his team shortened Steven’s trachea to take out as much tumor as could be seen and removed a lung due to his airway being blocked by the tumor.

After a long, painful – but successful – recovery, Steven needed to go back to Boston for rescoping to see if things had healed enough for proton radiation.  And while his body was ready for the next step in treatment, the harsh Boston winter weather was unrelenting on his one remaining lung.  So, Steven made the decision to go to Houston’s MD Anderson Cancer Center, the only other hospital that would agree to accept him, for the two months of radiation.

He completed his last round of radiation on Good Friday, and after an arduous two-day drive, he made it home on Easter Sunday.

“I heard over and over again, how rare it was to have what I have.  And to have access to all the medical literature was not reassuring at all.  Everything I read was really bad numbers and the numbers of people treatable were very small in comparison to other cancers.  Everywhere I turned, it was a total guess as to what I could or should do, and if anybody could do anything for me.”

“I have made it 2.5 years since finishing treatment.  I get scanned many times a year though there really isn’t much to be done for me if they find more.  But I owe it to those who come after me to be followed. I’m going to hope I can be the person that lives for 30 years or more and skews the numbers more to the positive.”

Steven is on his way to that mark, as he just celebrated his three-year post-surgery anniversary in November 2020!

Life has definitely changed for the Ohio native. As an anesthesiologist, he often had to hustle from patients’ rooms to the operating rooms then to recovery rooms, all requiring a great deal of energy and oxygen.

“That’s very difficult when you can’t breathe.  So, I retired at a much too early age.  I don’t speak of it much.  I don’t think of it much.  However, I am constantly reminded (on an hourly basis almost) that I am not “normal” anymore, as I get winded easily doing daily tasks that I once took for granted.  I ask God to let the rest of my life be healthy.”

“For me, I spent so long to become what I was that it has been very hard to find something else to do.  I don’t know how other doctors feel, but I feel that is a big part of who I am as a person.  To have that gone, to not be able to take care of those kids or their parents, is a huge loss.  One that I have still not been able to substitute for.  I think I would say to others that it is okay to be ‘lost’.”

A silver lining was the timing of Steven’s diagnosis, treatment, and recovery. His father had been suffering with Alzheimer’s, and with his now forced retirement, Steven and his 8 siblings were able to move his dad from Ohio to a memory care unit in South Carolina.

“It is the reason I think God gave me this cancer when he did. Being a physician, I was able to help make decisions and be very involved in his medical care, and subsequently in my mother’s as well.  I am thankful for that and I am thankful that I went to medical school and specialized in what I did.  It helped immensely being able to have my mother feel like she had people looking out for her and my Dad.  I hope that was a comfort to her and my father.  Had I still been working, I would not have been nearly as available.”

While he was able to help his parents when they needed him, as well as the countless patients he has helped save, Steven says there are people that have been there for him during his incredible journey.

“Many, many people have helped me along the way.  From way back in the Air Force as an enlisted guy, when I needed to take a class, or keep my car running, to having food when I didn’t have any, to getting into and making it through medical school and residency.  They know who they are.  My family and my wife, Alissa.  The list is too long to write here.  I owe them a great deal.  To my colleagues of Greenville Anesthesia, the surgeons, nurses and staff at Prisma, I love them like family.  I miss them all.  And I thank them for all the help they have given me and for just being who they are.”

Photo By Patrick Cox; Interview by Kim Lerstang


Interview by Deb Spear, Photograph by Patrick Cox

I’m a third generation chef. I grew up in it.  We owned catering and restaurants all around NYC.  I did work for the NYSE, big weddings, I did a lot of Manhattan work, Wall Street.  We had eight, nine places running. I ran the catering and restaurant end of the business. That’s what my father did and that’s what got handed to me.

 We came here for a change of life, to kind of get out of the rat race a little bit.  We visited Greenville, fell in love with the area and said, “You know what?  Let’s give it a try.” So I came down.  I went to work for the Marriot Corporation.   Then  I met Carl (Sobiczinsky) and David Williams, and the three of us decided to get together.

I was very involved in Soby’s for about 8 or 9 years.  Then I went back to doing private catering.  I opened up a kitchen studio on the Eastside.  Then an opportunity came up to teach college.  I knew I always wanted to teach, when I was I my 70s. But I ended up doing it in my late 50s. And at 57 I got diagnosed with cancer out of nowhere.    That kind of changes the landscape.

I am still working.  I ‘m 61 now.  It’s been a three and a half year battle. I was going into stage 3 when I got diagnosed.  You know, you got choices.  How do you want to fight it?  Do you want to fight it?  I kind of think I’m a tough guy.  I could do this.  I could win that battle and I jumped in full head of steam.

I did a load of chemo. I did infusion after infusion.  My infusions were 8 1/2 hours long and sometimes twice a week.  I worked teaching full time while I was doing chemo.  Then I went into surgery

A surgeon in Greenville recommended this guy up in Charlotte who he said was groundbreaking.  I decided to do everything up in Charlotte with him, Dr. Chris Gaston.  July ’17 was when I had that first surgery.    I ended up having nine more.

What you constantly say to yourself is, “Ok.  It’s August ’17.  Man, I’m gonna feel so much better August ‘18.   I need to get past this year.  I need to get through the next six months.  I need to get through the next three months.  I need to get through the next year.”

I love to work.  It’s a part of me and that got affected.  It’s slowed me down.    I’m probably softer emotionally than I was.  Being 11 minutes away from Times Square you shoved and you got shoved.  I kind of consider myself tough. But that’s changed.  I’m at the point now where I’m saying to myself, “Do I want to go to work? 48-50 hours a week again?”  Or do I say “Ok, that’s enough.”  If I feel good I’d rather go walk around in the yard or water my tomatoes.   I started to cook a lot more at home.  I have five granddaughters. I’m with [them] every day. I cook with my grandchildren so they all love to cook.  That’s what keeps you going.

I had surgery last week. I’m cancer free.  But what I’m dealing with are all the side effects of the cancer.   I have severe nerve damage.  I had spinal cord surgery last Friday to block pain messages to my brain from my left leg.  Everything is a trade. I trade one thing for another. I’m in pain 23 hours a day.  The pain from the nerve damage was so strong that I was willing to go back into surgery and lose that.  I don’t want to go back into surgery [but] you choose the battle.  Now I’m going to trade that pain [for a device implant].  I’m going to have electrical shocks running through my system. What I’ve been doing for the last year is just trying to find a switch, just turn it off every now and then. Hopefully I found that.

When I first got diagnosed I got the right guy.  Britt Bowman. He has been the absolute biggest straight shooter.  We both like baseball. He kind of likes to cook.  He likes to deep-sea fish, ocean fishing.  So we had a little bit of common ground.  He’s my go-to guy for everything.  He’s been tremendous, not just in my oncology stuff, but psychologically, emotionally, and will comment on stuff that I’m dealing with and give me his opinion.

He was using me to talk to other cancer patients.  “They’ve got decisions to make.  Come.  We’ll tell him your story.”  And I call.  The thing with cancer is that if the disease doesn’t kill you the cure will.  So the cure is difficult.  I tell them it absolutely sucks, but I tell them that I still believe there’s a light at the end of the tunnel.   And it’s helpful.  It’s helpful to me and to them. They talk about the cancer survivors park and what is that?  That’s part of the healing. The cancer park is a place that I can continue to heal; just talking about the cancer survivors park helps me.

You’ve got to build your team.  When you go into this, when you decide to do it, you have to build your team.  Your team is two sides.  You have emotional support. My wife’s been at my side every moment.  My wife and my children have never left my side.  It’s a godsend.

Then you have the physical side.  I’ve been brought into operating rooms over and over again.  I want to be awake when I get wheeled in.   There are people in that room who are going to be a part of what I’m about to do.  I don’t know their names.   I want to know who they are when I go in there.  Fist bump me.  Elbow bump me.  I want to say hello.

You have to commit to it. If you don’t commit to it, you’re not going to fight that battle.

Commit to it and you’ve got to fight it.  You go in and you fight it with everything you’ve got.  I can’t tell you how many times I laid there and said to myself, “Why the hell did I choose this?  It would be so much easier to fall asleep.”  But I kept waking up.  I kept waking up. I still continue to keep waking up.  And through it all, you keep going.  What I’m saying to myself now, “Man, what a great Christmas this is going to be.”


Interview by Amy Doser, Photograph by Patrick Cox

“For me this process has been a series of miracles.”

“I was diagnosed with invasive ductal carcinoma.   The official diagnosis came April 6th 2015.”

“At the time both of my children were getting ready to experience what I call major milestones.  One was graduating with an undergrad and the other from grad school.”

“I couldn’t think of what to give them for a graduation gift, so we thought the gift of time together – a vacation together would be good – so I was actually searching for the perfect vacation on my iPad and I decided I was going to sit down.  When I reached over for something on the counter, the edge of the open iPad and my body weight, hit in the right spot and I felt a little lump that I had not felt before.”  Even though I didn’t know it at the time, that little lump was going to change my life in ways I could not imagine.

“I called my internist on Tuesday morning.  She did the exam and said I don’t think it is cancer, I think its just an infected gland, but we’re going to schedule an ultrasound and another mammogram anyway.”  Miracle #1.

“I had just had a clean mammogram 7 weeks before. I went the next day, had the ultrasound and the mammogram and the radiologist saying the same thing, I don’t know what it is but it’s not cancer.  It’s most likely an infected gland.” He told me to keep an eye on things and if nothing changed, we’d schedule to do another mammogram in 3 months.

“By the time the weekend rolled around, I thought, if this is just an infected gland, then someone should just write me a prescription for an antibiotic.   So, I decided I was going to call on Monday and get a prescription. The radiologist called me.  He said, ‘I went back, and reviewed your previous scans and I’ve been fighting with myself and wondering if I told you to do the right thing by waiting 3 months. I ‘ve decided I don’t have to fight with myself, I could just call you and tell you I want you to have a biopsy and to have it immediately.”  Miracle #2.

I had the biopsy and the results came back positive. I would need surgery and radiation. ASAP

“One of the things I needed to do prior to surgery was an MRI and I am extremely claustrophobic, so I tried to figure out all sorts of ways around getting one. The answer was Xanax. The day before the MRI, I was in the grocery store and this man just kind of caught my eye. He was wearing dirty overalls; his hair was long and greasy, and he was wearing a baseball cap.  He looked kind of scary. He was saying to one of the cashiers, ‘you have to reprogram your mind.  You have to put in what you want.’  I hurried past them but then when I got to my car, it hit me.  I was like, ‘God, are you talking to me with this whole reprogram your mind thing.’  I was overwhelmed with thoughts and emotions. I waited for that man to come out of the store. I’m not sure why or what I was going to say when he came out but, after about 15 minutes and no sign of him, I left. The next day, I had the MRI and much to my surprise I didn’t have a heart attack and die. Xanax really does work.”

“I had 2 surgeries, 8 rounds of chemotherapy and 33 rounds of radiation and my body declared NED, no evidence of disease.”  Between surgeries, I happened to stumble across the last 5 minutes of a Joel Osteen sermon entitle “Reprogram Your Mind”, message # 622.  Remember the man in grocery store?  Miracle #3.  Angles don’t always appear in white robes with wings.

“I had my last treatment in December of 2015 and things were going along well until August of 2019.”

“My oncologist had been doing a CA 15 -3 test as part of my regular blood work.  The CA 15-3 is what’s known as a tumor marker and mine had started to rise.  So, because it was rising, we weren’t going to wait 6 months to re-check but rather we’d check again in August.  In August, the news was not so good – the cancer had come back and this time, it was metastatic. I had a bronchoscopy in September and started treatments, targeted infusion therapy every 3 weeks for the rest of my life.

Things changed again this past January.  What I’d thought was a pulled muscle in my neck landed me in the ER where they determined that I had a crack in my neck and the reason for it was because the cancer was now there too.

“Up until that point, I’d never had a why me moment.  I’d never said, ‘why me.’  The closest I’d ever come to saying it was that Saturday in January.  That moment, January 25th, was the absolute lowest moment of this journey.”  I remember crying out right there in the ER.  I said, ‘I don’t understand.’   I’d never prayed, ‘Lord don’t let me have cancer.’  My prayer was always Lord, just don’t leave me.   Whatever this is, if You don’t leave me, I’ve got this.  I can handle this.  You just can’t leave me.”

I even figured out a way to handle all my hair falling out. Suddenly having no hair can be a big deal. “I remember back in 2015, when the doctor told me the chemo was probably going to cause me to lose my hair, at first I was in denial.  I was determined that I was not going to lose my hair.  But when it did start to fall out, I decided that if I couldn’t stop it from coming out, the least I could do was control when it all fell out.  So, I decided to get my head shaved.  I knew wigs were not an option, hats made my head sweat and I didn’t know how to tie a scarf, so I was just going to rock bald.”

My daughter happened to be home from college that weekend and I remember saying to her, “we’re going to the hair salon tomorrow at 8am and I’m going to get my head shaved. She told me later just how unsure she was at the time that I knew what I was planning to do. It was only after we left the salon and we were out shopping and she saw me walking around so comfortably with my newly shaven head that she was able to take a breath and know that I was really good with being bald.

I mentioned earlier that my journey has been one of miracles.  I told you about a few of them, believe me, there is more to tell but instead I leave you with this thought. “In the end we all die, but you have 2 choices – live your best life until then or worry yourself about things you cannot control.  The only thing I can control is my attitude, I can control that, and that attitude feeds my determination to live.”

“My family has been amazing.  I think they feed off me.  I don’t have pity parties.  I am not going to curl up in a ball and cry.  So, as a result they don’t have pity parties either.  They have been extremely supportive of me and this journey and having them and my faith is better than any medicine.”

“I’ve always thought of myself as a conqueror and not a survivor.  I didn’t survive anything, I conquered it. In fact, I am more than a conqueror and that’s how I’ll live my life every day until it’s done.”


Interview by Debbie Spear / Photograph by Patrick Cox

When you’re first diagnosed, you’re in shock. You don’t know what’s going to happen. You don’t know much about the disease and you’re scared. I first got diagnosed when I was 29 years old by Dr. Scott Porter at Steadman-Hawkins. He’s an orthopedic oncologist and is an amazing doctor. My regiments was to have chemo, then surgery, then chemo after surgery.

After the surgery I was just very angry and needed some peace in my life. That’s why I started hunting. I’ve always been an outdoorsy person and I found hunting therapeutic for me. My Uncle Johnny provides the farm and we enjoy going together. I love going out before the sun comes up and getting to see everything come to life. Then when you go out in the evening you get to see everything kind of quiet and peaceful. It was a really spiritual thing for me. It calms my nerves and let me know that everything was going to be ok.

I was told if the cancer was to return, it would likely come back within 2 years so when I went for my 5 year scan and a 5 cm mass was found in my left lung, you can imagine the surprise it was to me. I had no idea it was there especially since at the time I was participating in hot yoga classes! I had gotten a 90% kill rate on my tumor so I figured only a 10% chance of the tumor returning. I had a lobectomy performed by Dr. Bolton (a doctor at GHS). I returned to my first oncologist for a recheck and found there were other cancer spots existing in both my hips and my pancreas and adrenal gland. My oncologist said I was terminal, there was nothing more he could do and to just get myself in a clinical trial at MD Anderson…maybe they had something for me, we are looking at quality of life now.  I could not believe what I was hearing. Anyone who knows me, knows I’m not a quitter. I quickly found another oncologist, Dr. Britt Bolemon who understood me better and suggested a regiment but wanted me to visit MD Anderson for a second opinion.

At MD Anderson, other cancer spots were found – in both my hips and my pancreas. I found that Dr Bolemon and MD Anderson were basically on the same page so I began chemo again. After many rounds of chemo, MD Anderson offered me a clinical trial. I agreed to enter the trial and was the first osteosarcoma patient to do so. After months of being in the trial, MD Anderson informed me the trial had not worked based on my latest scans. After that devastating news, MD Anderson just didn’t seem to be as forward looking about things. I returned home under the care of Dr Bolemon who was still upbeat about my cancer.

I’m satisfied with my care now. Dr. Bolemon is amazing and very aggressive, which I am too, so we match perfectly. I can’t say enough good things about the doctors I have, nurses and technician’s care at Patewood.

As you are going thru cancer, you kind of figure out who your real friends are, who’s going to be there for you. Some of the friends I thought I had, I couldn’t depend on but now, I surround myself with people that are going to be there and are positive influences in my life. My family, even extended family, have been the biggest supporters that I could ever ask for. They would give up anything to help me. My husband’s been my rock and my shield. He won’t let me give up. He sees when I’m struggling and picks me back up. He doesn’t push me. He motivates me. He makes me want to be around.

My parents, step parents and mother in law have been awesome. My dad’s always there for me and my step-mother has helped me a lot the enormous amount of medical paperwork. My mother-in-law has cooked (too many to count) dinners for my husband and me. My step-dad has helped with his devotion of time. My mom’s my best friend. I told my parents that nobody deserves to suffer this much pain to live. My mom says, “Well, Katherine, if I could take it away from you I would endure all your pain.” I’m thinking, “No, you don’t deserve that. I wouldn’t want you to.” And she says, “Well, if you had the chance to give the cancer away, who would you want to have it if not you?” And I was thinking, how about the bad people out there….but that’s not God’s way.

My nephew brings the biggest smile to my face and much joy in my life.  He comes to Clemson a lot and he loves me unconditionally.  He makes me so proud as he’s good in almost every sport.  He is playing in many golf tournaments this summer! I used to play golf too, so he’ll listen to me when I say “Jack, calm down.  Take a deep breath.  Everything’s going to be ok.”

The most helpful thing is knowing that people are thinking about me or praying for me. I get texts or cards in the mail….That always seems to brighten my day a little bit. I’ve had several strangers approach me and ask if they can pray for me. I’ve tried to carry that along with me. A friend at the cancer center, Marcus recently passed away and I was the one to introduce myself since I don’t usually see folks our age and we kind of had a connection. One of the nurses we had together at Patewood went to his funeral and his parents said, “Please tell Katherine we’re praying for her.” It is very hard when you hear of someone you knew from the cancer center dying. But I’m still fighting and have been for two years. So my advice is to not listen to the negativity. I wouldn’t be here today if I had listened to my first oncologist.

The greatest thing I’ve heard is “You inspire me.” To know that you’re just walking down the street without anything on your head and you‘ve inspired somebody who’s been wearing a wig or just been diagnosed, you can help them just by being yourself. Once I even shaved my own head!. I had random hairs standing up and just took my razor. . . and asked my husband, “Did I get the back?” He said, “You did a really good job!!”

The biggest surprise is some doctors (not my doctors here) sometimes try to “lighten” the diagnosis, so when you read the reports, the reports sound much worse. I’ve learned not to pay attention to the reports as much as I need to because I become fixated on them and I don’t need to do that. I’ve had two benefits coordinated by wonderful friends in the Clemson and Aiken communities. Both events were awesome. The two raised altogether over $130,000 which has definitely helped with medical bills and our financial household responsibilities. I didn’t know how much I was loved.

I don’t want to die. I don’t want to leave my husband. I don’t want to leave my family. I have a couple of tattoos….One is Isaiah 40:31 and Joshua 1:9. Those are just a reminder every day, that I need to keep going, that God is here for me. I have some doves on my ankle. They remind me of peace and hope.

I’m not giving up. There’s something coming around the corner. Definitely don’t lose hope. I just have a feeling that something great is about to happen. Don’t be discouraged. Push on. Even on bad days, the next day could be better. Live one day at a time and live your best life you can. I’ve definitely learned to live every day to the fullest because you never know when it’s going to be your last. I don’t think a lot of people do that, think that way but being faced with a terminal cancer, you learn to let the small things go. Be your best every day.


Interview by Debbie Spear / Photograph by Patrick Cox

David:  I was seven. I was in the 2nd grade. It’s funny the things that you remember. We went to a Cub Scout banquet the night before my diagnosis and I ate a bunch of dessert that night and woke up the next morning with a terrible stomach ache. One of the things I remember is not being able to get out of bed. My mom was so mad at me because I had so much dessert. She said, “You should have a stomach ache.  Get up.” “No, Mom.  I can’t sit up.”

Gary:  The pediatrician thought it was acute appendicitis. We got him to the hospital and all the doctors there thought the same thing.  So he went into surgery and what was going to be a routine 45-minute procedure was two and a half hours.  Then Dr Cary Stroud, one of the pediatric oncologist at Greenville Hospital System, came in and said it was either Crohn’s disease or cancer.  He wasn’t sure until they had done the biopsy. He provided a great explanation and just had a lot of confidence. What’s cool is that we were out for dinner a couple of years ago and here David is, 33 years old and Dr. Stroud recognized him after almost 20 years, if you can imagine that. 

 David: I just think he’s that kind of person.  I remember how great the entire staff was. I just joined the advisory board of Clement’s Kindness, a fundraising and support charity for childhood cancer. Dr. Stroud, Ruth Cook and Pam Broughton all had a huge impact in my treatment and are still very involved in the program after almost 30 years. These people are really are so special.

 Mom and Dad were always just so honest with me.  I went back to have surgery thinking it was just appendicitis and came back and woke up and it obviously was a much different outcome.  I remember them explaining what happened and not really understanding what it all meant. I just trusted them completely and went through the process.

 Gary:  We talk. It’s just what we do.  We don’t hide anything because we think that just creates concerns.  Like, what else do we not know about?  We’d rather lay it out there, get support, be aware of issues and help each other.  To us, that’s just a better way of dealing with it.  It’s just honesty, it’s open.  We don’t always broadcast things to everybody else, but among us that’s just what we do.

 David:    The chemo lasted three or four months.  I remember getting nauseous a lot, being bald and going to school and having hat days at Pelham Road Elementary School.  Everyone was so supportive and I remember the school having a hat day my first day back to help me feel comfortable with my big bald head!

 Gary:  He was such a good sport.  He never missed a beat with what he was going through.  We took him for one of his annual check-ups after his treatment and the nurses were making a huge deal over David’s success.  While we waited for the doctors, David looked at me and said, “I wish they’d stop making such a big deal about me.”  I said, “They need to.  Those other kids need to see success.”  His perspective was really about caring for the other kids that were still going through treatment.

 Gary:  Dad lived with prostate cancer for about 10 years.  He was 89 when he died, and his funeral was on Christmas Eve. Two months to the day after we buried Dad I went in for my annual physical.  My doctor said, “Your PSA has gone from 1.5 at 50 to 3.5 at 52 so we probably need to be watching this.”  And I said, “No, we’re going to do a little more than that. I buried Dad two months ago after his long battle with prostate cancer.”

 So I went to a urologist and I said, “I want to get it out of here.”  He goes, “No, let me tell you about the options.” I said, “You really don’t need to. You know, like Lewis Grizzard’s book, let’s take that thing out and stomp that sucker flat.”

 We ended up going up to Duke.  I met with the chief of urology and he suggested that I do a radical prostatectomy.  He said when he gets prostate cancer, that’s what he’ll do, so I went with it.

 I was at breakfast a month later, talking to a guy and his son.  He looked at me and said, “You seem different today.” He sensed something about what was going on with me and was perceptive enough to bring it up.  So there at the breakfast table, we started a conversation about what we were going through.  That’s happened on at least two or three other occasions where people share what they did, what they learned, what they went through. It’s very much a fraternity. There are so many people that are willing to share their story to help others.

 Dad lasted 10 years.  I will too. You know it’s actually been longer than that.  It’s been 13 years.   So I just take it as “here’s something that we need to do.”  God will be with us and we’ll figure it out.

 There’s a consistency of how the two of us think.  We’ve got obstacles and challenges all the time in what we do for a living.  We get up every morning and most of the days are good but we have those days where we hit some road blocks, but you just work through them.  Like in treatment, David’s was surgery and chemo, mine was surgery and radiation and ultimately we finished the treatment.  But just evaluating what’s in front of us and what we’re going to do and let it run its course and not be overwhelmed.

 David:  Overall, the mentality of knowing what’s really important is key. You can’t sweat the small stuff.  There’s always a lot to do, and plenty of learning opportunities in our business that you have to deal with. There are lot of pretty strong personalities and people can tend to get pretty heated sometimes. If you can just keep an even keel and keep it all in perspective, you can overcome pretty large obstacles. Having the right mindset is the biggest thing I’ve learned from both of our situations.

 Gary: So in 2010 when my cancer came back, one of the things I said immediately to my wife, Leigh, is that if David can do it as a kid, I can do it as an adult with the same spirit.  I found an Oncologist, Dr. Britt Bolemon, who has been just incredible for me the last 6 years. He gave me confidence about the treatment plan, and a great calm about the situation.

 David:   I knew he would get through it because he’s the strongest man I know.

 Gary:    I was asked to be chair of Leukemia and Lymphoma Society Light the Night Walk.  So we were at the kickoff luncheon and it was my time to get up and tell my story to the crowd.  I had a story to tell and I had kind of structured it in my mind and I felt fine.  I stood up, got to the podium, I said about two words and that feeling came, just where, oh, my gosh, I can’t do this. The emotions were just swelling and I couldn’t talk.  My natural thing to do was to look at David.  What in the world am I going to do?  David had this great smile on his face and he looked up and he said, “Dad, I’m ok now!”  We all laughed and it relaxed me and I believe we pretty much did the rest of the story together. It can be emotionally exhausting, but with a good support structure around you anything is possible.


Interview by Debbie Spear / Photograph by Patrick Cox

(Interview with Ashley Rehn, Maddox’s mother)

It’s so crazy. Maddox’s not a complainer at all. They told me, after he was diagnosed, they said, “He feels awful.”  But he never told me that.  He is super active, played baseball while he was sick.  Didn’t know it.  Jumped on the trampoline.  Swam. Maybe two months before he was diagnosed he was saying his stomach hurt, bad, and he wasn’t wanting to eat.  I am gluten intolerant.  So when he would say his stomach hurt I thought he had a gluten sensitivity, like I do.

We’ve always gone to the lake.  We went to Door County (WI, where grandparents live) the week of July 4th and this week on Lake Michigan he didn’t like riding in the boat.  He said it made his stomach hurt.  I thought maybe he had motion sickness, maybe that’s new.

 So we flew home Sunday night and on Wednesday our nanny called and said, “Ashley, his stomach hurts so bad.  He’s on the floor.  He won’t stand up.  His stomach hurts. “So I came home from work and he was lying on the ground super pale and I remember thinking, “Man, he must be in a lot of pain if he’s this pale.” So I thought it was his appendix about to burst.  I told my husband, “Ok, I’m taking him to the ER.  His appendix is about to burst.”  Then he spiked a fever.

I took him to the ER, told them, “I think his appendix is about to burst.”  They got us back right away and gave him Motrin.  As soon as they gave him Motrin, he felt great.  They felt on his tummy and said, “Nope.  His appendix is fine.  It’s not his appendix, so you can go home.”

My personality is not boisterous, but I was like, “I’m not going home.  Something is wrong.  I know it. What explains the fever? I want you to look at the appendix one more time.”  They said, “Ok, we’ll do an ultrasound and blood work.”  They came back and said, “The appendix is a little bit inflamed.”  I said, “See? I told you!  I knew it!”  They did the blood work and came back and said they were going to do a second vial because [with] the first vial, the saline solution they rinsed the i.v. with got mixed in with his blood.”  When they came back after the second time, they said, “We have a room for him. He needs to be admitted right now.  We don’t know what’s wrong, but something is and he needs three blood transfusions right now.”  That’s why they were thinking the saline solution was mixed in.  He had no red blood cells.

It was midnight.  They started blood transfusions but they didn’t know.  We were meeting with specialists all through the night.  Thursday they figured it out.  It was leukemia.   They never let us leave.  They had him scheduled to get his port placed and started with the spinal tap, the bone marrow biopsy, and chemo.  My husband and Lolly and Popeye (Ashley’s parents, Maddox’s grandparents) were with us the whole time.

It was the worst thing ever. I remember looking at him in his little gown in his room playing with this little airplane with the nurse and I was begging the doctor, “Can we go home for just one day?  I want one day for him to have a fun day.”  He said, “Ashley, you’re not hearing me.  He is so sick, he will not live another two weeks if we don’t start treatment right now.  He has to start treatment.”

It didn’t even make sense. It was just last week we were on vacation.   I couldn’t stop crying.  I would just cry on his belly, sobbing.  And he would say, “Mom, what’s wrong?”  I would just say, “Mommy’s stomach hurts.”  I didn’t want to scare him.  But the child life specialist (Lindsey) was a huge influence and said that’s the opposite of what you should do.  “He’s very scared, seeing his grandparents crying, his mommy and daddy crying.  We have to explain things to him.”

We just stayed in the pediatric ICU the rest of that day.  It was just devastating.  They scheduled [the spinal tap] for Friday morning.  We’re used to it now, but he’d never been sedated.  So the child life specialist came in and explained to him. “You’re going to be going with these doctors and put to sleep,”  and showed him what a port was and explained that he was going to be getting a port.   She’s amazing.  It was amazing, how much it helped him, but I didn’t think that was going to be the case.  But she knew just how to do it.  The way she explained it, he got it.

They took him back and that’s when she talked to us in detail. She told me to ask Maddox all the time, “Is there anything you want to talk about?”  Always ask so that he doesn’t hold it in.  Early in treatment he said, “Mom, does Jesus ever talk to you? Because he talks to me.”  Our first day home, he said, “What did I do to get cancer?”  I almost broke down and said, “Nothing!  You did nothing.”  And he said, “Well, how come Beckham didn’t get it?”  Two days later Erica, another child specialist, said that with Maddox, he’s so obedient, it’s like you do good, you get good.  You do bad, you get bad.  That’s his whole life, so he’s thinking he did something wrong.  So she talked to him.  “You did nothing.  Some people get sick and we have to help them.”

The hardest thing for me is to not let on that I’m nervous in front of him.  I can tell if I’m nervous it makes him nervous.  Early on we sat down and I said, “I want you to ask me anything you have questions about and I will answer truthfully.”    I think that has been a huge help because no matter what he asks me, he knows I’m going to tell him the truth.  If he says, “Is this going to hurt?”  I say, “Yes, it’s going to hurt but it will be over in two seconds and I’m right here.”

That’s the hardest thing. You can only do so much to help. So much is just out of your control. We are grateful Maddox is doing so well.


Interview by Amy Doser//Photograph by Patrick Cox

“I was diagnosed in October of 2017 with a stage 4 alveolar tumor. I don’t know how you would describe what that is. Mine was in my pelvis area, not a fun place to have it. When I think back on it, I think I had a lot of symptoms that I didn’t pick up on. I had a swollen lymph node down in that area. They did biopsies and that’s when we found out what it was. I started with the chemo right from the start.”

“Right after they found out what it was, they sent it off to St. Jude and I went off to St. Jude. They found it on a Thursday, and we went to St. Jude on a Sunday. So pretty fast, immediately.”

“I was supposed to be at St. Jude for a week, but I was there 16 months. I did all my 54 weeks of chemo at St. Jude and 33 days of radiation. I came back here for a year, relapsed, and then went back. And now I’m back and forth.”

“When I was in remission, I went every three months to St. Jude for scans for about a year and during one of those scans I relapsed and since then I’ve been back and forth three times.”

“I didn’t like being the cancer girl. I was depressed the first go around.”

“I had these little strands of wispies that I called them, the strands of my hair and so I came home and said I just need to shave them. I needed to be comfortable now with who I am. After that I was pretty comfortable with who I was. I took my big hat off. I never let anyone see me without my hat heaven forbid, so I put the hat away.”

“I was a typical teenage girl before cancer. I played lacrosse. Didn’t care much for school. And that changed somehow. I don’t really like school now, but I care more about it. I was more of a carefree person back then.”

“I graduate this year and I’ve applied to Clemson where I’m going. I plan to major in psychology. I want to be a child life specialist. My cancer has impacted that.”

“They don’t really talk about prognosis, but they’re very hopeful about this treatment We caught it soon enough so there is wiggle room to be able to try stuff. If they can remove it, then they remove it. My new tumor this time is in my breast. It’s not considered breast cancer. It’s alveolar. They told me in the beginning, my type of cancer likes to come back. And if I make it to the 2-year mark cancer free there’s a better chance that it won’t come back.”

“I’d like to hope that my cancer has really impacted those around me positively.”

“The advice I would offer to someone who is going through cancer is definitely to talk to people. Don’t keep it bottled up and to really enjoy the good times when it may come along and just sit up in bed and to just put on a smile.”


Interview by Debbie Spear / Photo by Patrick Cox

Serendipity. Luck. Courage. Determination. Pride. Excellent medical care. Strong community of family, friends and strangers // These are the hallmarks of the Johnson family’s  story of survival of their daughter’s cancer, from a casual conversation at the 2017 CHOP Cancer event to the 2020 birth of their first granddaughter, Maggie.

At the CHOP Cancer Gala in 2017, Greenville oncologist Larry Gluck and his wife Diane, good friends and neighbors, asked us to join them at their table. . . Just kind of casually over dinner Larry said, “So what is your interest in cancer?”   I said, “Well, it’s kind of pervasive in my family.  My father died from it, his two sisters died from it, we believe his grandparents died from it.”  He immediately said, “You need to be genetically tested.”  Larry emphasized, “Time is of the essence.  This needs to be an urgent thing!”  I asked what it entailed and literally the next week I met with the genetics counselor at GHS.  A week and a half later, I met with her again.  She said, “Here are the results. This is the BRCA gene. I know you have three daughters.  They need to be tested.  Now.”

I immediately got in touch with all my daughters. It caught them by surprise.  It was something that came out of the blue. They knew what had to happen.  They agreed to be tested locally, where they were, and the results to be sent to GHS.

The CHOP Cancer event was in late March, early April.  My results came back mid-April.  Late April they were being tested.  Early May their results came in.  Larry took a look at [Sarah’s results] and said, “You obviously have the same BRCA gene that your dad does. I would highly urge you to have a scan.” From that something suspicious showed up on her scan. 

Part of what I had to deal with was a heavy sense of guilt, because I had given this to her.  The idea that you have a defect that you knew nothing about gave me a huge sense of, “What have I done to my beautiful young daughter who is having to go through all this stuff?”  It was most intense the morning of the surgery in New York. . . She was in recovery and when I walked into her recovery room with all this guilt, the first thing she said was, “Dad, you saved my life.”  So that changed a lot of the perspective.  It was a very poignant moment that relieved a heavy burden. That was probably one of the most emotional. . .  The most emotional is finding out; the second was having to tell them; and then three, seeing her go through all this.  But that was big. 

Although Sarah had her surgery at Mt. Sinai in New York, after consulting with Dr. Gluck she decided to return to Greenville for chemo. Not only were her parents here, but the humane approach of the GHS team of cutting edge, personal, wholistic care made the decision easy.  She and her husband came home. 

They moved in, their dog moved in.  She started chemo in July, finished in mid-January, and then exactly one year later she was pregnant. The baby [Maggie] came October 6, a perfect baby.  I am totally sure that by the time Maggie gets to the point of having to worry about this, there will be an ability to turn on and turn off gene mutations.  So I believe that in her lifetime it will be something that will be controllable.

We all came together as we have never come together as a family before.  We were always close, even though our kids live in different cities.  At that point, they were in New York, Allison was at Georgetown Law, and Caroline was in Chicago.  But it truly brought us together.  Sarah felt great support from the family.  Everybody embraced her baldness.  She maybe twice wore a wig.  She said “I know what I went through.  I’m proud of it.”  She did mention that one of the things that you feel is community.  You feel the community around you.

Everyone was always asking, “How is Sarah?”  Of course that gave us a feeling of community as well.  It was just little stuff that meant so much.  Neighbors brought in food.  They put up a food train. They just never seemed to forget, any time you saw them. It truly made a big difference in how we dealt with it.

Not surprisingly, Steve’s journey was closely tied to that of the rest of his family.  As the routine of Sarah’s treatments became more familiar, he experienced a broad and sometimes paradoxical range of emotions. 

It was really tough in the beginning when the chemo started.  We’d been through two or three months of chemo.  We give our dog a mixture of canned dog food, dry dog food and green beans.  I had the glass dog dish.  I was in there with a big spoon — chop chop chop –and Sarah left the kitchen in tears.  She didn’t say a word but she left sobbing.  And I went, “What was that?”  Ben came down and said “Just understand that everything is on edge and any sensory change, noise, can immediately trigger emotions that are just beneath the surface.”  It was a key lesson in knowing that she was probably struggling much more than we knew. She controlled it very well but just beneath that surface there is so much emotion likely boiling beneath the surface.

What begins to kick in is your faith, your family and the support you get from your doctors.  Especially with the PRISMA team, you really come to the awareness and true belief that you can do this.  You can take on this challenge.  And she just was a trouper, totally.

In the first couple of treatments, it was very tough emotionally to see her just lying in the bed.  What was exciting was seeing her up and around in Week Two and running in Week Three because she was going to beat this.  That made you both happy and very proud.  She’s a very disciplined person.  She had a very regimented approach to challenges.  She approached this the same way, very methodically.

She came to the realization of the power of the mind.  The power of the mind is stronger than you think.  Chemo is very aggressive but the power of the mind, a positive attitude, changes the chemistry of the brain so that you don’t freak out.  She would tell anyone who gets a diagnosis DO NOT GO TO THE INTERNET.  Listen to the team that is around you.

How has it changed our perspective?  You realize how on one hand, how fragile life is. But on the other hand you see how strong, determined and committed someone can be to overcoming what comes along. And Sarah did that.

As for what it means to be a survivor, Steve describes it proactively.

You can take charge of a large part of your health by exercising, and attitude.  

Since the Johnson family approached Sarah’s illness as a team, with participation from all, it’s not surprising that Steve would ask Sarah what it means to her to have survived cancer. 

It’s kind of a reset button.  You have been through something very difficult that a lot of people don’t go through.  It’s an opportunity to reset your life, to figure out how you’re going to live a meaningful life for yourself and others.