CAR T-cell therapy produced a complete remission of Marcus Humphrey’s lymphoma

Marcus Humphrey: I’m Marcus Humphrey, and I am sitting here with my bride, Mary. We are getting ready to celebrate this month—on the 29th of this month—our 47th anniversary. We are parents to four beautiful children and seven grandchildren.

We have a daughter and three sons. In my earlier years prior to meeting Mary, I was second born to my mom and dad. My dad was a minister with the AME church in North Carolina. I grew up as the second oldest. There were three boys and one girl. We lost our sister back in 2006.

I enjoyed a life of good health and strength, and was always very active, energetic, always on the go—never doing anything terribly extreme as our son has. But I did enjoy life. I enjoyed beach walks and hikes and mountain climbing and—not extreme climbing—but you know, just going out, getting out in the outdoors, fishing and boat, swimming, things like that.

Mary Humphrey: Rowing.

Marcus Humphrey: Well, this is earlier, prior to meeting Mary. And then we met in North Carolina. The day that I met her, I pretty much claimed that I was going to marry her. In fact, I was speaking to a third party, a young man that was in our care at a facility that we worked at with special needs individuals.

This young man was David, and he had already told Mary that he was going to introduce her as his new girlfriend. He said, when this guy Marcus gets here, I’m going to introduce you as my new girlfriend. I didn’t know all of that until later on, but when he did, I said, you can’t, she can’t be your girlfriend. He said, why not? And I said, because I’m going to marry her. That was on day one. Here we are.

Mary Humphrey: It was alarming and charming. And I was like, “In your dreams, buddy.”

Marcus Humphrey: Coming up as a “PK,” preacher’s kid, I found my niche with all the things that a kid would do—neighborhood lawns, raking yards and shining shoes as a little black kid, working at a barber shop, making quarters to fill my pockets, you know. Then I decided I wanted to go to school to further my education after high school.

To my understanding, I was the first in my family of four kids, including mom and dad, to go to a formal college. That was a little bit of a challenge, but I was determined that I was going to make a way of it. I had some early failures, but nonetheless, I kind of kept that on the back burner. I’m still going to make it, I’m going to do OK.

I’m going to go to college. I met Mary when we were working in North Carolina, and I had been previously working at an institution with cloth. We worked together at this institution taking care of special needs individuals at a pretty large facility. I had been there for a number of years. As a matter of fact, I spent 13 years working there.

It was one of those things that I think probably looking back, I was somewhat being prepared for that kind of work. My sister, being the youngest of the four of us, was born with a handicapping condition. She has cerebral palsy. And the doctors told my parents all the things that my sister would not ever be able to do. That because of her condition, that she was epileptic and seizures, and with a left hand that didn’t function fairly well, she would have to learn how to depend on others to do everything for her.

All of that, I think, probably prepared me for being compassionate toward others who had conditions that were limiting their ability to enjoy full life. And it was satisfying to meet this young lady who came to work there and was introduced to me by my supervisor who says, I want you to teach her everything you know about your job, because she’s going to fill the next vacancy.

And I said, Bob, I’m not only going to teach her, I’m going to teach her everything I know and then I’m going to keep her. I was making certain that she was hearing me. We worked together with some very close friends and we carpooled. And then eventually our carpooling exclusivity to each other, and we just ran, together and separated ourselves from everybody else. But work.

Mary Humphrey: He’d mainly been a teacher.

Marcus Humphrey: Mostly. All these years I was invested in being an educator. It was one of those things. I got my associates and got my four year undergrad work, and then two masters. We were pursuing lives as teachers—husband and wife, both of us in early childhood education in elementary.

I enjoyed fifth grade, teaching the elementary school kids. They were my niche. I went through the earlier grades and I found out I didn’t like the kindergarten and I didn’t like the second and third grade. I found it with fifth grade. They walked in with an attitude, like they knew everything. And it was my job to let them go on thinking that until they realized they needed a teacher. That’s where I came in. I enjoyed it immensely.

It was December of 2021 when we parted ways for Christmas, and I said, I’ll see you all next year—not knowing—I had no idea that at the end of December I would be diagnosed with lymphoma. That’s the introduction to all of that.

Marcus Humphrey: During that winter break we had scheduled time with our families—our kids and their family, our daughter and her children. Mary and I were planning a trip to the Florida Keys. We had already booked a ticket. Our son in California had booked tickets for us to come out there for Christmas and spend Christmas.

The week prior, we went to the Keys with our daughter Jessica and her kids. Just prior to that, and Mary can help me get the details of this correct. I had a small little swelling on the right side of my neck, and I wasn’t sure what it was. It would only pronounce itself when I’d lean my neck to the left and I could feel this little swollen area—just kind of concerned me. And I asked if anyone else saw it.

I was in the back seat of the car. In the passenger seat, Mary turned and looked and said, “Oh my, do you think we need to turn around, go back home?” And I said, “No, we’ll be fine. Well, let’s just go on. Have a good time.” The progression of that was moving pretty rapidly because it affected my general get up and go, and have a good time. I was more laid back and not interested in getting in the water once we got there. Not interested in a lot of activity with my grandkids.

Mary Humphrey: Which was not typical at all. He typically would’ve been getting the kids with fishing poles and out in the water with him. And instead he was just being a beach bum with me, which was definitely not typical.

Marcus Humphrey: By the time that was over, and then we came back home to South Carolina to Beaufort—I think the day after.

Mary Humphrey: Christmas Eve. I felt like we knew something was wrong. He didn’t think it was that serious, I don’t think.

Mary Humphrey: Well, I thought it was cancer.

And then my daughter-in-law, who’s a nurse, came for Christmas Eve dinner. We had a big gathering at our house with our kids and grandkids, and she felt the lump on his neck. By this time it had grown some and his eyes were swollen and he was definitely not himself. She said, “Oh dad, you need to get that checked by a specialist. Whatever it is—that’s serious.” For me, that just confirmed my fear about it.

But the following day was Christmas day, and we had tickets to California. So we took the plane, got to California, and the first thing my eldest son said when he picked us up at the airport was, “Dad, what is going on with your neck?” It had grown that significantly in a week.

I was tremendously worried Marcus still was not. Then we made it from California, made an appointment with the near nose and throat specialist who thought it was a cyst when we got home, but he scheduled him for a CT scan and a biopsy.

Marcus Humphrey: I was concerned that this thing had gone from a small, almost a tip of a knuckle on your hand about that size on the side of my neck to where it looked like…that.

Mary Humphrey: It didn’t look quite that big, that’s a little further along, but it, it was big.

Marcus Humphrey: To say I was not concerned at that point—I was concerned, but probably in my gut feeling—like this is something that can’t be ignored. This is very serious, but I don’t want to even entertain the idea that it could possibly be cancer.

Nobody wants to accept the big C because growing up, when I heard of people in my own family circle—close friends of my parents that got cancer—the next thing the family was hearing was—how long?

There was nothing in me that wanted to embrace how long, although, although I’ve lived a life knowing that all of our dates are numbered. We are not given eternity here. We are born, we live, we die. But again, I was not a person who was given to illnesses. I’d never been hospitalized all my life, never had any of the childhood diseases, the mumps and measles, none of those things. And now here I am, a victim to whatever this was. We needed to find out.

Mary Humphrey: When we got back home and went to the ear nose and throat specialist, he thought it was a cyst. He gave Marcus the name of some kind of cyst. Marcus as a kid had had a cyst on the side of his head that he had to get lanced from time to time. He thought it coincided with that. I was convinced that was not correct.

But he also did schedule him for a CT scan and a biopsy the following week. That day he got the CT scan, and then he was to go back for a follow up. I went back with him when he went for the follow up, and as soon as the doctor saw him, he said, “Oh, that’s not what I thought it was.”

He immediately called in the whole team of—he had some students working with him and his other staff, he had some nurses, and a PA, and he called them all in. He did a needle biopsy. He’s looking at the results of the CT scan, and he said, “I don’t understand why they didn’t do contrast. I ordered it, you can see it on my order here. But they didn’t do contrast.” And then he looks further down the report and he sees that his kidney numbers are extremely high.

He said, “Oh, that’s why they didn’t do contrast, because your kidneys are not in good shape right now. The numbers are very high.” He did the biopsy and at 7:00 a.m. the next morning. I get a call saying, “Mary, this is cancer. And it’s very aggressive. I don’t know what kind, I don’t. I do know it’s very aggressive and you need to see an oncologist right away.”

He recommended that I start making calls and he said he would start making some calls because it’s still holiday time. Office staff are slim and we haven’t gone back to school yet. Neither one of us could reach an oncologist. Finally late that afternoon, he gets somebody that says, I can see him on the 19th. This was the 12th now.

Marcus had gone back to school for a few days and his school—fellow teachers and principal were all like, “Marcus, you’ve got to get whatever that is dealt with you that you need to take as much time as you need. Get it checked.”

Mary Humphrey: We were both in our room. In the bedroom. I woke you up.

Because you were definitely not feeling yourself. We’d already decided you weren’t going to school. And so I woke you up and told you, and then I started making calls. I was extremely worried, Marcus still was not until we went back to the ear, nose and throat specialist.

He told us what he had gotten with this one oncologist—that he said, I can see him, but I can’t see him until the 19th. This was the 12th. And he said, “I told him, I’m afraid this man might not be here on the 19th if we wait until the 19th.”

Mary Humphrey: When Marcus heard that—you say it.

Marcus Humphrey: That was definitely very alarming. To hear in a seven day stretch, I might not be here. Again, I think all the things that a healthy individual might imagine. I had this flash of—what could it possibly be? I’ve never been sick all my life, never been in a hospital. I’m a good person.

The things that you just get bombarded with. You’re thinking “Oh my gosh, seven days. I’m a decent husband, and a father, and granddad. And I’ve got seven days to think about from here.”

I had an emotional flooding, just of tears and sobbing. Mary went down to talk to the family members. And I had probably about a five minute pity party.

I felt like I didn’t have long to consider what I needed to do. I just knew, growing up in a family of church-minded people, and being in a church, and being active as a believer, I knew I was not fully in control. It wasn’t up to me. I didn’t have the final word. I needed to not forget my foundations. I needed to do a lot of praying and soul seeking and refuse to accept defeat. That’s my immediate response.

Mary Humphrey: The ear nose and throat specialist got on the phone with the Medical University of South Carolina when he couldn’t find an oncologist in Beaufort. That was the earliest that anybody could see him in Beaufort.

Basically we were striking out. Both of us. He called the head of the head and neck oncology department at MUSC. He scheduled them immediately, that day, for a core biopsy. He said to Marcus—Marcus was still concerned about work. He said, “Your job is not significant right now. Your life is on the line. He said—you need to get this diagnosed as to what exactly it is—and treated right away. We left that day for the Medical University of South Carolina and basically moved in there for about seven months.” It was, and so what

Mary Humphrey: The head and neck gal who was doing the biopsy was brand new to MUSC. She’d just moved from U of Penn to Charleston. I immediately had a connection with her because U of Penn is who repaired my aorta. She had a student that was working with her. She was teaching the student how to do a core biopsy on Marcus’s neck.

It was a little, “Oh my gosh, she’s teaching somebody else how to do this,” which you agree to when you go to a medical university. But it was like, “OK. I want them to do it right.” She was quite good though. She also looked at the CT report and she said, “I don’t know what kind of cancer this is yet.” She said, “But I would not ignore this report about your kidneys.”

She said, “I would go to an ER. You could go back to Beaufort and go to the ER there, but you need to know what’s going on with his kidneys.” And so there we were about an hour and a half from our home in Charleston already at MUSC. So we said, let’s just go to the emergency room here. When we did, they ran all kinds of tests and they admitted him right away. They knew it was lymphoma probably within that day, but they didn’t know what type, what subtype.

Mary Humphrey: We’d heard of it, but I certainly didn’t know. I don’t think either of us knew about all the various subtypes that it could have been. I knew there was Hodgkins and non-Hodgkins lymphoma, but I didn’t know that out of the non-Hodgkins lymphoma that there could be a myriad of some types. We did not know much about it.

Mary Humphrey: Basically, they explained what lymphoma was, that it was a blood cancer and that it wasn’t like a tumor—that you could go in and remove a tumor. That it typically was treated with chemo, sometimes with radiation. They also told us that they needed to find out what subtype it was so that they were using the right protocol of chemo for that particular subtype. That was a few days in.

Mary Humphrey: I was wondering if he was going to be able to breathe. This was getting bigger.

Marcus Humphrey: I was probably at my worst. As a person who was trying to not walk in fear, I was being overcome with fear, almost dread, and was having a difficult time to not see anything else, even though Mary was there for me. I knew our kids were all on red alert. I had their love and support, their prayers. I had a circle of family, of friends that were praying for me. I still was having a difficult time not dealing with the fear.

Mary Humphrey: Yeah.

Marcus Humphrey: The pain of the swelling on the neck—Mary just said—was so extreme. If you put your pointer finger up about halfway behind your ear, it was pushing up that far behind the ear and down underneath my clavicle. The picture that I showed you, it was excruciating pain to be in any position except holding my head straight and level.

Any turn or leaning to this side, to the right side, was unbearable on the pillow at night. I’m trying to stay off the right side, but I’m accustomed to sleeping on my left side and I can’t lay my head over. I’m bracing my head up with a pillow to try to keep the bend from happening there.

It quickly interrupted my sleep with headaches that doctor Brian Hess said were more extreme than the worst migraine headache. I’ve never been prone to a migraine headache, but my younger brother was, and I know the sleepless nights that we all as family had to endure because of his extreme migraine headaches.

Dr. Hess says, “Have you ever had migraines?” I said “No, but my younger brother did.” And he said, “Well, these are more extreme. The headaches you’re getting—they measure out more severe than the migraine headache.”

Mary Humphrey: One of the things that on the 19th, they still had not fully decided what subtype he had. They scheduled him to get a full lymph node from his groin. They were going to do a surgery to get a lymph node because they said there were conflicting test results.

Now we’re at the 19th, which is the day that the ear nose and throat specialist had said, “I’m afraid this man might not make it till the 19th.” That’s the loud noise in my head. He’s scheduled for this surgery and they’re letting me in the waiting room outside the operating room with him until they bring him in. In comes the anesthesiologist who specifically works in oncology. As soon as he sees Marcus, his eyes get huge.

“Oh my God. This is the kind of thing I get called in the middle of the night for. Whatever kind of subtype he’s got, he needs treatment to start today.” I felt a wash of relief.

I felt like somebody had seen that he’s not going to make it if treatment doesn’t get underway. I felt like he was the one that kind of got the team together to be like, “OK. Let’s go.” Because by then this mass on his neck was definitely impeding his voice. I felt like he was not going to be breathing soon. That’s basically what the anesthesiologist was saying. He said, “I’m going to have to intubate him. ” So I’m like, “OK. Let’s hurry up. Get on with this.” Chemo began on his birthday, January 20th.

Marcus Humphrey: Debbie, I’m sure they probably gave us some introduction. However, my pain threshold was so lacking that I couldn’t hear anything. I was dealing with the pain.

Mary Humphrey: And the emotion.

Marcus Humphrey: Whatever was being said in medical terms, I couldn’t even get my head wrapped around it because I was just dealing with it.

Mary Humphrey: They were fabulous. They were giving us printed materials. They knew I was taking notes on everything and they were definitely giving us quite the education. But I also was aware that Marcus was out of it. He was not tuned in.

I knew I had to be kind of doubly tuned in for both of us because I knew there was going to be this fuzzy period. He was already in this very fuzzy state of—he felt like he wasn’t there, other than he was in so much pain and so much anxiety. They basically explained the different protocols that they planned to use. They said they would start with R-CHOP and they explained what R-CHOP was. They gave us the full definition of all the words and what those medications were.

Mary Humphrey: Yeah. He was diagnosed with two subtypes. He was diagnosed with diffuse large B-cell and follicular lymphoma. They explained that diffuse large B-cell could be treated, and they didn’t use the word cured, but they said that the outcome could be very positive, that it might remain in remission, but that follicular rarely went away—fully went away.

When they did R-CHOP, this mass on his neck by the following day  had greatly subsided. It was like, I felt like it was an answer to prayer, but it was also like, whoa. They let us go home and said we would be coming back for round two. But well before round two it was growing again exponentially.

And so they thought, well, maybe he’s gotten an infection from where the biopsy had been done. Because it was definitely looking rough where the biopsy had been done. And so they prescribed an antibiotic that seemed to make it worse. So they prescribed some steroids, which also seemed to make it worse. I sent pictures to them through his chart. I’m like, “It’s just not.” And they said, “Oh no, come right back.” Did you have another round of R-CHOP, or did they go right to R-ICE?

Marcus Humphrey: We R-CHOP twice.

Mary Humphrey: Yeah. I think they did too.

Marcus Humphrey: Each time we had an infusion, there was an after-effect of the chemo. Stuff that people don’t want to hear about. They don’t ever want to experience it. And now I was having to experience it because I was faced with…

Mary Humphrey: That, or die.

Marcus Humphrey: Sick on the stomach, lethargic. The headache, I think, was attributed to the swelling. I’m not so sure it was not somewhat contributed by the chemo. Very dry.

Mary Humphrey: Because they also gave him chemo in his spine too, to help avoid any passage to the brain. I felt like he was just poked and prodded. They had to move the port from one side to the other.

Marcus Humphrey: You know, when you’re—well, you don’t know, but when you’re there and you’re the patient and you’re dealing with all of this bombardment of different reactions to medications that are going into your body, and you’ve never experienced any of it before, and you’re trying to figure out—”Why am I feeling this way? And why am I feeling that way?”

And I can’t separate any of it, and it’s all hitting me at one time. And then I’m having these feelings of gastro issues, and I’m feeling like, OK, I’m going to get sick on the stomach. And I’ve got, I’ve got an extreme case of diarrhea coming on here, and all of a sudden I’ve got to urinate, even though I feel like I just filled up that bottle that they gave me, but I’ve got to go again. They’re pushing the water, pushing the water, and then all of a sudden my system is shutting down. I can’t urinate. They do a catheter and this catheter’s not working. I finally get nephrostomy.

Mary Humphrey: Nephrostomy tubes in his kidneys.

Marcus Humphrey: Both sides. And I’m having to deal with the reality of my organs not functioning. And again, for someone who’d never been hospitalized and never been sick, I’m wondering, is the end here? Are they just delaying the end? They’re going to the end of this episode of chemo, and then I’m done. Because I didn’t feel like physically I had any more fight left in me.

Mary Humphrey: And then they started R-ICE, which that to me, that just wiped him out. He almost immediately lost about 60 pounds—60, 65. He was never a fat man. When we got married, he was one of these guys that would drink things to gain weight and muscle. He was not one of those that ever had the battle of the bulge like his lovely bride does. He was always in good shape, mostly muscle too. And so it wasn’t like when he lost weight, it wasn’t like he’d lost fat. He lost muscle bass.

Marcus Humphrey: In my good days, if I lost five pounds, I was concerned.

Mary Humphrey: When he lost so much weight, and he lost all his hair when he went through R-ICE too. I know no other way to describe it other than he looked like somebody that had been through the Holocaust. He looked like a skeleton. It was so scary to see him.

It was scary. That was very, very scary. And especially scary seeing that it wasn’t working, because by then, they had very carefully explained, “Well, what if chemo doesn’t work? What do you do?” And also by then some of the lymphoma that was behind his eye had begun to push on his optic nerve. He was really still having these terrible headaches. His vision was starting to be impacted. They had decided they were going to break…

Marcus Humphrey: They referred us out to an eye doctor.

Mary Humphrey: An eye specialist who specialized in oncology.

Marcus Humphrey: After several tests, he said that if this continues the way it’s going right now, we may end up having to take your eye. To multiply the already dismal picture here, I can’t imagine me having sustained life with this little frail body that was looking like a toothpick now.

I had issues before. Again, if I lost five pounds, I felt like—but now to be so frail and then to think, you’re going to take my eye out? How long am I going to have these recurrences of these headaches that won’t let me sleep at night? And these tubes hanging out my backside? Life had been diminished. So extremely diminished that it was almost taking my desire away.

Marcus Humphrey: But, I’ve been a fighter all my years. I just have been that person. I was a runt in my family. My mom’s sisters made comments—derogatory ones—about my size, because they were all suffering from obesity, and I was a little tiny skinny kid who couldn’t get any weight on him. They would make comments and snicker about me, and it gave me an inferiority complex. Things like that. Then you’re thinking, “OK. Here’s what I’m reduced to.”

Mary Humphrey: I will add too, that even though he may have been feeling like that, he wasn’t sounding like that. Anybody else that was coming in with any kind of fear or negativity—he wasn’t hearing it.

Marcus Humphrey: I was telling them, don’t believe that in here. Don’t bring it in here.

Mary Humphrey: He was speaking very positively, with a lot of hope. And fortunately, the floor that we were on at MUSC, that oncology floor is filled with some of the most amazing people I’ve ever met.

They were so full of hope—and continually encouraging, and praying, and kind words, and cheerful, and would tell jokes and  turn things to make them funny. Along the way we had the wonderful support from family and friends who would come and visit.

Even though we were still on the edge of COVID restrictions, they did allow visitors. They did allow him to see other people, which really made a huge difference. I think those encouraging words—and if I would get freaked out or scared, he would be the one telling me not to worry.

Even though he may have been worrying himself, he wasn’t voicing it. He wasn’t giving lip service to worry and fear. He was giving it to faith and encouragement and just being very positive, even when I could tell he felt like crap and worse.

Mary Humphrey: Well, when he was going through R-ICE, they had, even before he actually started on R-ICE, they did explain CAR T. They explained what it was and what the process of it was: That in order to even get approval to go through CAR T, you had to have two different types of chemo fail.

They said, if that happens, then you can get approved. I was asking questions very directly, like, “What is that about? Is that an insurance issue, or what is that?” And they said, “Yes, partially. It’s very expensive, and so it won’t get approved unless chemo fails because it’s more expensive than chemo.”

And I said, but the chances of it working are higher than chemo sounds. And they said, “Yeah.” And I said, “Well, I hope at some point in time they’ll start using that as a first instead of last resort.” When they realized that R-ICE was also failing, they started giving us more preparation for CAR T.

Mary Humphrey: Yeah. I was, and they’d given us a book about CAR T. I’d read all of it and read more, and interviewed people, and knew people who were involved in cancer treatment.

I started doing a lot of research about it, and Marcus read the first page in the book that they gave us—and he read the sentence that said “might cause death,” and he closed the book, put it aside. I had come to the place where I realized that if he didn’t get some kind of treatment that worked, that the cancer was going to kill him.

He had such a heavy tumor load that his oncologist, Dr. Hess, had a lot of second thoughts about whether or not to go with CAR T because he felt that it could kill him. Or, that it could leave him with very severe brain damage.

I think we all got to the place where we knew that if he didn’t, if they didn’t go that route, that he wasn’t going to make it. And so I think it was with a lot of trepidation that he did decide to go through with it. The nurse practitioner that is the CAR T coordinator at MUSC, she’s an amazing lady too, Colleen. She was very hopeful.

And there was another oncologist that was one of the attending physicians on the seventh floor there at MUSC, Hamza Hashmi. He saw Marcus pretty regularly too. Hasmi was a very with it, very fast, strictly business kind of guy. He had a lot of confidence about outcomes with CAR T. He had seen some real positive results.

I remember, one day he came in because they definitely determined that R-ICE was not doing it. And he said, “Oh, it’s alright.” He said, “You’re going to go through CAR T. That stuff is like Pacman. It’s going to go in there and find all that lymphoma and eat it up. With this chemo, you’re in there with a hammer. It’s like whack-a-mole. You hit it in one place, it pops up in another. But with CAR T, it’s like Pacman goes in and eats it up.”

As much as I had read about CAR T, I don’t think mentally, either one of us were prepared for the intensity of how intense it was.

Marcus Humphrey: Well, as Mary has already said, when I opened the book up and I read the first page or second page on all the precautions and things that to look forward to—because I needed to know what was going in the body, even though it’s not something I was familiar with. I just wanted to have some kind of knowledge and be able to articulate in a conversation, or even hear a conversation and know what was going on, and say, “OK, that’s why I’m feeling this way. It’s because of this, it’s because of that. And this is something they say you might expect. So that’s why I am feeling this way.”

Nobody wants to accept the big C because growing up, when I heard of people in my own family circle—close friends of my parents that got cancer—the next thing the family was hearing was—how long?

—  Marcus Humphrey

I eventually picked that book back up and read it from front cover to back and again and again, and then became acutely aware and tuned in to conversations when the teams would come in and have conversations.

Then, all of a sudden, things started happening, like my craving for—I couldn’t get enough water in my system. I was asking for not just tap water, I wanted ice water. I need ice water. I needed it with ice in it. I was losing my appetite with this CAR T and nothing—no food had any appeal whatsoever.

My taste buds were shot. My sense of smell was shot. I couldn’t smell it. I can remember feeling like if I were losing weight, I needed to eat, and I knew that. Food that—Mary was coming in and ordering. Did you order lunch yet? Did you order breakfast? Did you order dinner? And she would be lickety-split on it, making a phone call, and then we’d wait for the hour and then the food would show up.

Then I had no interest in eating it. I’m feeling like I’ve got to eat, and I’m hearing her saying, “You’ve got to eat.” And I’m like, I know. “Well, you’ve got to have some fruit if you don’t have something else.” And I remember so clearly having a bowl of red grapes. I could get just a little taste of the red grapes. Not the white grapes. I couldn’t taste them.

I couldn’t taste the eggs or any of the things on the menu. But the red grapes seemed to give me a little flavor. But I can remember having one grape that I was chewing on seemed to have been five, 10 minutes of chewing one grape, trying to make it go down. And I couldn’t. It was like, all of a sudden, again, one of the adverse realities of this whole treatment was kicking in.

It’s like, OK. It’s not that people give up the will to eat. They want to eat, but if I’m eating and everything I’m eating is—I’m losing it back to the bathroom. And now I have no taste for it and I can’t smell it. And so what’s the purpose? It’s like, you’ve got too many negatives coming at you in one direction. And then you’re like, “I’ve gotta be able to move around, but I’m so weak I can’t get out of bed.” In fact, during this CAR T, I was immobilized.

Mary Humphrey: He couldn’t walk, couldn’t talk.

Marcus Humphrey: I lost my ability to give you my name and date of birth. I couldn’t count. As a tenured teacher, I couldn’t count from a hundred to zero by tens. They’re coming in there and they’re asking that I go through this and I’m looking at pleading with Mary with my eyes and hearing their words saying, she can’t help you. But my eyes are pleading with my wife. Please, give me the first number.

Mary Humphrey: The cytokine release syndrome and the neurotoxicity that kicked in day two after CAR T was far more intense than I had anticipated. I was realizing that the big fears and the concerns of why they even were hesitant to maybe do CAR T.

He wound up in ICU, didn’t know his name, didn’t know his birthday, couldn’t formulate a sentence, couldn’t walk or talk or move an arm or leg. That was extremely frightening. Even once he got out of ICU, he wound up with a head full of patches where they check for seizure activity. It was hooked to a camera that was observing 24/7 of seizure activity, or really any activity around him.

Anybody doing anything, saying anything to him, him doing or saying anything, was being videoed. That was very intense because I could tell he was really struggling during that time too, because he was definitely not with it at all.

And I kept wondering, “Is this it? Is this going to be it?” And that part, I didn’t feel prepared for. Even though I read that this could be. We had two nurses that had worked with a lot of patients that had been through CAR T, and both of them kept encouraging me and saying, “We’ve seen this before. We’ve seen it before. He’s going to come around.”

They were really, very good about reporting everything, and recording everything, and letting his doctor know exactly what was going on. I felt like his doctor was so carefully observing just the right amount of steroids to give or not give, because one of the things they had explained was that steroids can eliminate the positive effects of CAR T, but also they can help manage the CRS, the neurotoxicity. Having that head knowledge was very helpful.

I think for me, the very helpful part was those nurses who kept saying, “We’ve seen this, he’ll come out of it.” Really, they took such good care of him, and they were so attentive. They really took care of me too.

Marcus Humphrey: Even though I had all those wires attached to my head, and I couldn’t tell you my name and date of birth. That was awful. I still managed to try to keep that face on, that gave her hope. I remember at one point, early on, I was there at the hospital and she and my daughter called me and they were going to do a FaceTime call. I was going through the thick of it on the negative side, and I just couldn’t bring myself to allow them to see me in so much tormenting pain.

I just refused the phone call. I answered and said, “I’m sorry, you can’t see me like this, I’m hanging up, bye.” They said, “No, don’t hang up.” I said, “I’m hanging up now, bye.” Going from that to now coming out of this CAR T and dealing with not just the effects of the chemo, but CAR T had a twist all its own. That was, I smelled like CAR T. It poured out of my pores. The smell of it, the taste of it was in my mouth. I couldn’t get rid of it. It was one of those.

Mary Humphrey: It was a lifesaver.

Marcus Humphrey: Yeah.

Mary Humphrey: I would say probably toward the end of June. I started feeling some more hope, anyway. Because for quite a while he could not walk. To see him so debilitated was just very frightening.

By the end of June he was released to go to a Hope Lodge. The first one in the country was actually started by a woman in Charleston who was a Holocaust survivor and worked at the Hope Lodge until she was 103. Just quite a story, if you ever get a chance to read up on it. The Hope Lodge in Charleston is right across from MUSC. By the end of June, they had released us to go stay at Hope Lodge.

Once we were there, even though he couldn’t do the stairs—they had an elevator. He could get with a walker from the elevator to our bedroom. Once he was there, we started seeing some progress and he was able to have more visitors there too, which was nice.

They had this great big open screen porch that you could have gatherings on. Our big family would come and we could even do a few little short outings. We went with the grandkids to the aquarium and to the beach. We had one of those wheelchairs with the big fat tires. We wheeled him out on the beach. My son wheeled him out on the beach, and I saw him begin to start making some turns.

My sister and brother-in-law came, and several family members, his brother and our sister-in-law, and a lot of family and a lot of friends, which I think made a huge difference. We started seeing some real positive progress. I feel like it was right around the 4th of July, I think it was the fourth or fifth, maybe sixth of July, that they let us go home.

We live in a four story town home, and our daughter at the beginning of COVID went through a divorce and she and her three kiddos lived with us. Being around them, and we have an elevator in our home and our bedroom’s on the fourth floor, so he could be in his own bed, come up and down, be around family, and there’s a pool. I almost made him go out to the pool.

Marcus Humphrey: I dreaded the walk out to the pool because it was such an ordeal, physically. You’re taking baby steps and I’m thinking, I’m dealing with the neuropathy in my left side. That was still an issue. I couldn’t bring my fingers together. I couldn’t make a fist with my left hand. I’m thinking, “It doesn’t make sense to go out there with all this weight loss, and looking frail, and try to imagine me putting on a swimsuit and being visible out there to my community.” It was a mind. A big negative. Then thinking, “Once I’m in the pool, then what? It is not like I’m going to be swimming.” I kept thinking “I can’t, I can’t, I can’t.”

But at the same time, I’m looking at her and I’m thinking, “She’s such a fighter for me that I can’t disappoint her. I can at least try.” Until I get out in the pool—and I just kept the shirt on and my swim shorts. Once I was lowered on the pool deck and just kind of dropped my bottom in there, holding onto the side, I could kick my legs and it was good therapy.

It was a gradual pool so you could walk in and not have any drop offs and you could go as deep as you want. I’d get to where I could sit and the water. I would be at my chest, and I was just moving my arms left and right, front to back, and inside. Trying to pull water with a hand that looked like this. Pulling on the right side was great. To do it on the left side, you can’t pull water when your fingers are separated like that. It’s to no avail.

Anyway, I kept hearing her encouraging words and I kept seeing her encouragement and hearing her tone. She was relentless. I knew, I knew it was for my best. I thought, “I’ve got to keep this girl happy. I’ve got to be around.”

Marcus Humphrey: They were so encouraged to hear that I had been in a pool.

Mary Humphrey: The staff at Hope Lodge are such a delightful group of people. I feel like we made lifelong friends there.

Marcus Humphrey: Oh, for sure.

Mary Humphrey: They have a fundraiser. There’s a semi-pro baseball team in Charleston. At one of their fundraising events, they raised money for Hope Lodge, and Ronald McDonald House, and MUSC. They did a big fundraising event at one of the ball games.

They asked Marcus to be their starting pitcher, That was in July. He was still needing a walker and definitely not feeling strong, and so we told Dr. Hess about it. He was like, “Yeah, I guess you could do that. Just be really careful. It’s hot out there. And maybe…OK.” And so he OK’d it, and then he came to the game.

Marcus Humphrey: Such a support.

Mary Humphrey: And Marcus, we wound up getting where we parked. He had to walk quite a ways. And it was, and it was blazing hot.

Marcus Humphrey: Just to get to the building and then from the building…

Mary Humphrey: Out to the pitcher’s mound.

Marcus Humphrey: There were no gaiters to give me transport. There were no wheelchairs for anybody to push me in. I was pushing my walker.

Mary Humphrey: Until afterwards, then they found a wheelchair. But anyway, one of my nephews came and one of my brothers came to the game and they helped him get out to the pitcher’s mound.

Marcus Humphrey: And you helped.

Mary Humphrey:  And I helped a little bit. You fussed at me. Anyway, he winds up to make his pitch, and then they call the pitch over the loudspeaker.

They said, “Oh, that looked like a strike to me.” It did not look like a strike to me, but it was fun. I think that positive encouragement really started to kick in and help.

His medical team, the doctors, the nurse practitioner, Lindsey, all of them—his pharmacist—everybody would gather whenever he had an appointment, and gather and just come and be encouragers.They’ve really been fabulous.

Marcus Humphrey: Just the fact that they did, Debbie, it was not only encouraging to me, I could also see that it was having such a positive effect on Mary. I wasn’t going to trade that in for anything.

I’d seen her and encouraged her to not worry, not to worry, not to worry. At a point when she could leave my room—I was encouraging her because she would get a hotel room within walking distance, and I’d say, “You’re not sleeping here on that little couch tonight. You need to go get a good night’s rest.” Finally convincing her that I would be fine until she came back the next morning. Seeing her walk in and be greeted with all the supporting staff that just kind of gave her that hope.

It just really encouraged me all the more to just keep on keeping on, and not give up the fight, and see that not only were these encouraging words, but they were feeding my spirit and hers. That yeah, we are going to make it.

Mary Humphrey: Marcus had been the associate pastor at our church for a lot of years, and we go to a small vineyard church. Just a few months before Marcus’s diagnosis, our pastor and very good friend of 20 years had moved, out of the community, taken a job with Samaritan’s Purse as a chaplain, and so we lost a key friend. Didn’t lose him, but he was a distance away now. Marcus had a really good support system in not just our church, but other churches in town—people that really reached out to him.

We’re part of an international Bible study group and have friends that are in Europe ,and friends that are in the states that are of that group. So many of them reached out and would come and pray for the doctors, pray for the nurses, pray for us.

We had a lot of prayer support. I really feel that God made such a difference. Having faith in God and his ability, from my perspective, even to give some people, the scientists that came up with the ideas of CAR T, or chemo—watching that process of how they developed this machine that hooks into a patient’s neck and draws out blood, but then separates just the T cells out of that blood, and then to send it off to be boosted up with chimeric antigen receptors.

I was like, “What? Who even thought of that?” To me, there are so many miraculous things that happen as a result of people wanting to help heal other people. I know that can’t be discounted for.

Being on a floor where you see people that are dying, that these are their last days, or they’ve been battling a disease that has gotten the best of them. And to see the difference that friends, and family, and people who are praying, and people who are encouraging, make in somebody’s recovery. It is profound to witness that.

That’s been an integral part of our journey, and Marcus has had the opportunity to go and speak at several different churches in our community, people that have been praying for him. He’s gotten up and not only told people what his good doctors have done, but also what the great physician has done. He’s really a miracle story because—I feel like CAR T is a miracle thing. What, did somebody have a dream about that?

Marcus Humphrey: Here’s a picture, Debbie. This was in January when they showed us a real picture of not just a swelling on the neck that we could see. But they did a scan to show the aggression of the cancer and how far spread it was. At one point when they gave words to it to make us know how extreme it was, very much later when we could hear it, the doctor says, “I didn’t want to say this back then when you were in the middle of all of it, but you had the worst case of lymphoma I have ever seen.” All the black.

Marcus Humphrey: Yeah. And then after the CAR T, this is a side by side scan. Trying to give you a clear picture.

Marcus Humphrey: You see, my brain, my heart, my kidneys and my bladder and the cancer was nowhere to be seen.

Mary Humphrey: His last three scans have been clear

Marcus Humphrey: December and February.

Mary Humphrey: That was one of the things that Dr. Hess told us. With each one, the risks of it returning  diminish greatly. There’s also a lot of hope. This amazing gift that we were given of being able to make this trip [to Europe] has been pretty phenomenal.

Marcus Humphrey: We’re looking out the window here over the Adriatic Sea.

Marcus Humphrey: Thank you for giving us the opportunity.

Mary Humphrey: Thank you for the work you do.