Living Well With…

By Gretchen Eichenberg, Caitlin Giddens and Kevin Tankersley

Traumatic Brain Injury, Stroke, Breast Cancer and Multiple Sclerosis

We all try to stay healthy — eat right, exercise, get checkups. Even when we do all the right things, sometimes something happens that changes our lives. It might be an injury, a diagnosis or a sudden traumatic event. For those of us who find ourselves in these situations, living well takes on a whole new meaning.

The Wacoan met with four people who are living with serious health issues. Writer Kevin Tankersley talked with Blake Hyland, the young gymnast who survived a life-threatening brain injury, and Nicole Woodard, who has lived with multiple sclerosis for 21 years. Editor Caitlin Giddens sat down with Scott Johnson, who had a stroke in his brainstem in 2012. And writer Gretchen Eichenberg visited with Shawnna Latino, a nurse who recently discovered she has breast cancer.

Each of these people has continued to live their lives. They lean on family, friends, co-workers and unexpected support from people they did not previously know. In the next few pages they share their stories.

You’ve probably heard of Blake Hyland. His story has been covered in media outlets across the country and around the world. A Facebook page — Prayers for Blake Hyland — has 13,602 likes.

Blake Hyland is the young gymnast, 14 years old at the time, who was practicing a new maneuver at Texas Dynasty Cheer & Gymnastics the evening of February 18, 2014. His mom, Cindy, had dropped him off at practice that day, and his dad, Pat, was going to pick him up an hour later.

Five times Blake nailed the move: a running front flip with a twist. Since this was a new maneuver for Blake, he was jumping into a foam pit. On his last try, however, Blake hit the side of the pit, and his body snapped down, slamming his head onto the surrounding concrete. A woman training to be a gymnastics judge was standing less than two feet away. She described the sound of Blake’s head hitting the ground as “a head-on collision at 60 miles an hour.”

Blake was taken by ambulance to Baylor Scott & White Hillcrest Medical Center, where it was discovered that there was bleeding in his brain. Doctors at Hillcrest removed part of Blake’s skull to relieve swelling, and he was then taken by helicopter to Cook Children’s in Fort Worth. He was in a coma for five weeks. He was given a 50-50 chance of even surviving, and if he did, they said he would never walk again.

“We appreciate your diagnosis, but our God is bigger than that, and our son will walk out of this hospital one day,” Pat told doctors at the time.

Pat and Cindy and her parents and some friends then gathered in a courtyard at the hospital, and Pat said he prayed, “God, we’ve told Blake he’s yours his whole life, and he’s yours now. We have no control in this. Take him if you want, but selfishly, we want to have him still here. So we ask that you heal him.”

And Blake did walk out of that hospital on May 23, 2014, to applause and cheers from his family and hospital staff. He and his mother stayed in Dallas for a year so Blake could undergo rehabilitation from 9 a.m. to 4 p.m. every day at Centre for Neuro Skills.

Blake, who is now 16, and his parents — and a new friend, Diane Phillips, who is almost family — live in a townhouse near China Spring. The Hylands sold their house in Hidden Valley, where they were living at the time of the accident because Blake’s room was on the second floor, and he still has trouble navigating stairs. They’re building a one-story home.

Blake is a sophomore at China Spring High School. Pat works in franchise development at the Dwyer Group, and Cindy is the owner of Massage Envy, which opened in September. Blake’s older sister, Chelsi, 22, lives in Euless and is planning a move to Seattle, Washington, later this year.

WACOAN: Tell me what happened that day.

Blake: I had been doing gymnastics for nine or 10 years. I was doing a front full twist. It’s a front flip in the air, and in midair you rotate fully. I was going to the pit for the fifth or sixth time, and when I landed, half my body landed in the pit and half my body didn’t, and I hit my head on concrete, on the right side.

They drove me to Hillcrest, where they don’t normally operate on people 18 or younger, but the doctor there knew I wouldn’t live unless I got operated on. I was 14 at the time. He took my skull plate off and put it on ice and flew me up to Cook. I had less than a 50 percent chance of living, and if I did, I would be on a ventilator and in a nursing home the rest of my life.

But then my cousins started a Facebook page, which encourages people to come pray behind me. About a month and a half later I woke up, and I’ve been pretty much relearning how to do everything again.

WACOAN: How advanced of a maneuver is a front full twist?

Blake: Very advanced. Yes, sir. Very, very, very advanced.

WACOAN: How long does it take someone to learn how to do this?

Blake: I haven’t a clue.

Pat: It depends on what they’ve built up to get to that point. They have to learn certain foundational maneuvers to be able to do that. It’s not something you start out with. Blake was one of the older boys at the gym at the time that was being taught. It’s primarily a girl-centered gym because they do cheer and gymnastics there. They don’t have a boys’ gymnastics program.

When we moved here [from Grapevine], Blake was at a level that they didn’t have here in Waco. So he started doing tumbling. They have a power tumbling team. He also started doing parkour. [Editor’s note: Parkour is a noncombative martial art, which evolved from training movements used in military obstacle course training.]

Blake: That was fun.

WACOAN: My son would love to do parkour.

Blake: I was very good at parkour. I ran up a wall and did a backflip off of it. Pretty much everything [you see] when you go on YouTube and search parkour, I did.

WACOAN: How long had you been doing that?

Blake: Probably a year.

WACOAN: Had you practiced a full front twist prior to that day?

Blake: Maybe.

Pat: He was just starting to learn it.

Blake: I cannot remember.

WACOAN: What all can you remember from that day?

Blake: I have glimpses, but I don’t know if it was from that day or what. So I don’t think so.

Pat: Doctors said he might not remember days just before that ever again.

Cindy: He went to school and to track practice and then to gymnastics [that day]. He doesn’t remember any of the day.

WACOAN: Doctors said he wouldn’t remember anything before the accident?

Pat: Around the day of the accident — maybe a day or two or three days before. He’ll remember generalities, but not specifics.

WACOAN: What is your first memory from after the accident?

Blake: Probably just being in the hospital, but —

Pat: What do you remember?

Blake: I remember the white cloth sheets and such. And some people around me, like Mom, maybe [Dad] and some nurses. I do kind of remember, in a haze, of me trying — the key word there is trying — to get up and do stuff.

WACOAN: Did this affect your memory of things prior to that day? Can you remember things from years ago?

Blake: Sort of, yes, sir.

Pat: His long-term memory is better than short term.

Blake: Yes, sir.

Pat: The good thing about his long-term memory is that he knew who we were when he came out of the coma. And he knew who he was. He knew his age. He couldn’t speak at first. He remembered we were from Grapevine. He has the bigger picture of his long-term memory. Short term is a challenge.

WACOAN: When he was at Cook, when did you see some progress?

Pat: He was in [intensive care] for five weeks, and then they brought him up to the rehabilitation floor. That’s when he started getting better. I wasn’t going to leave until he was on the rehabilitation floor. We stayed there full time, Cindy and I, at the hospital. We would go over to Ronald McDonald House and shower, then come back. Then I was going to go back to work, come back to Waco.

[One day] I was praying over Blake, and I was about to go home. I was talking to him and praying over him, and I said, ‘Take care of your momma,’ and I said, ‘I love you.’ And I leaned down and gave him a kiss. And I came back up and two, three second later, he [tried to return the kiss]. And Cindy said, ‘He just kissed you back.’

WACOAN: And up to that point —

Pat: Nothing. Every day they would come in and pinch him. They would do the pinch test to see if he would respond. They weren’t getting a response.

Blake: I needed some lovin’.

Pat: And not pinching!

Blake: I needed lovin’, I tell you.

Pat: They were pinching his toes, his inner thighs, his nipples to get him to respond, and he just wasn’t doing it.

After five weeks in the intensive care unit at Cook, Blake was moved to the rehabilitation floor, where he continued to make progress and finally spoke for the first time since his accident. After a nurse asked if there was anything he wanted to say, his first words — labored and coming out slowly — he said, ‘I. Don’t. Like. This.’

Cindy started bawling. And I’m just like, ‘Amen. This is awesome.’ I know that when Blake doesn’t like something, he’s gonna do something about it.

And he recognized us. The nurse asked, ‘Who is in the room with me?’ And he said, ‘Mom and Dad.’ That was a good answer.

WACOAN: Was he still at Cook at this time?

Pat: We were leaving Cook and looking for a rehabilitation place.

Cindy: We had gone as far as we could [at Cook].

Pat: It was time for us to leave.

Here’s the interesting thing. There’s not that many really good places [for brain injury rehabilitation]. If you need knee surgery, your insurance company typically says you’ll get 30 days of physical therapy and occupational therapy or whatever you need. It was the same thing for brain injury. But brain injury takes longer, right? Our awesome state of Texas, the year before, had passed legislation that says if a patient suffers a traumatic brain injury in the state of Texas, if the doctor says they need more therapy, the insurance company has to pay.

WACOAN: Did you know anything about that legislation?

Pat: Absolutely not. A person from the Brain Injury Association of America told me that you never think about traumatic brain injury until someone close to you suffers from one. Then that’s all you think about. That’s so true. This allowed him to go to a great place.

For 16 months, [Blake and Cindy] lived in the Ronald McDonald House in Dallas while I worked in Waco. She would take him from 9 [a.m.] to 4 [p.m.] every day, doing PT [physical therapy], OT [occupational therapy] and speech [therapy], counseling and education. It was a very intensive program.

He was part of a homebound program where [teachers from Dallas ISD] would actually come to Ronald McDonald House. He was able to pass ninth grade doing that. Straight A’s. He was incredibly intelligent before. He still is, but it takes him three, four, five times longer to process information and to write. He used to read a book in a day and a half. Now it takes him 20 or 25 minutes to read a page.

Cindy was living there full time, and I would come up a couple of times during the week and then on weekends. They were there until June of 2015.

They came back to Waco, and [last] July he started doing outpatient therapy at different facilities. He’s now doing Rehab Without Walls. That’s where they come and work with him in a functional way. For example, this week, we went grocery shopping, and he made us dinner.

WACOAN: What did you make for dinner?

Blake: Spaghetti. It was pretty good.

Pat: What else did you make?

Blake: Some bread. And salad.

WACOAN: What was the hardest part of making dinner?

Blake: Maybe cutting the little vegetables and the bread. The bread was hard. Even my therapist had a hard time with it.

WACOAN: Are you right-handed or left-handed?

Blake: I am right-handed, but as you can see, my right hand has had some casualties. It has some disabilities. I have learned how to become ambidextrous.

WACOAN: What have you learned to do with your left hand?

Blake: Pretty much everything.

Pat: We’re trying to get him to use his right hand. We got him a Nintendo 3DS. And he’ll use his phone in his left hand, and he’ll use his thumb [to type]. What I saw after his therapy, he was holding it in his right hand and [typing] with his left hand. That’s huge. He’s getting better.

Cindy: The school has somebody who will write for him, and they got him an iPad so he can take a picture of the work and type [his homework] and email it to the teachers. His writing is a lot slower. They’ve made a lot of accommodations.

Pat: And he’s had to come up with strategies because it’s hard for him to tell you what he had for breakfast or lunch, much less when a teacher says, ‘Make sure you do this assignment.’ What he’s learning is to leave messages or send texts. He’s getting better, but the physical side improves faster than the memory side. Cognitive ability is still great. He’s got all A’s and one B.

Blake: In Spanish. That’s the B.

Pat: He’s full inclusion in school. Now they don’t give him the full workload. If there are 10 homework problems, maybe they give him four or five.

WACOAN: You had gone to Live Oak Classical School for a couple of years before the accident, but then I read on your Facebook page that it was too fast-paced [afterward]. Is that right?

Pat: They couldn’t provide the accommodations in the private-school setting.

Cindy: And they didn’t have the staff. And [Live Oak] was a classical school, and they couldn’t have him not do as much as the others. They have certain requirements. But they were awesome.

When we started at China Spring, a lady would come meet us in the parking lot and get Blake out of the car and walk him into school. And they have someone walk him to class, whether it’s a student or staff.

WACOAN: How did you decide on China Spring schools instead of another district?

Blake: One of the reasons I know about is the amount of kids in my grade.

Pat: The neuropsychiatrist said if he’s going to leave Live Oak, it’s better for him to go to a smaller school. We had to have a school large enough to have the resources, but not too big.

WACOAN: What’s your biggest challenge right now?

Blake: In school, it’s Spanish.

WACOAN: What’s the toughest thing you’re dealing with outside of school?

Blake: I don’t know. My body, just mobility and such. And my brain too, with memory. Yes, sir.

WACOAN: You’re a sophomore. Does it look like you’ll graduate with your class?

Blake: Yes, sir. I hope so. That’s what we all are planning on, everybody in my class.

WACOAN: What was it like going from a small private school to a larger public school?

Blake: It was different, but good.

Pat: I think one of his challenges when he was going through Live Oak was it was very rigorous. He would come home at the end of school and be up until 9 [or] 10 o’clock, having to do homework every single day. [Now] most days he’s done with his homework even before he comes home, so he can focus on therapy when they come to the house. Or just relax and have some downtime because he also needs to rest.

Blake: Amen.

Pat: Walking through the halls and going all over campus is therapy in itself. It’s physically demanding.

Blake: I’ve got to go to another building once a day.

WACOAN: How do they get you there?

Blake: I was walking, but now they are so nice because they bought a golf cart. So they drive me. And it’s awesome because it’s an open golf cart, but now they have a cover over it, plastic with cloth lining, to keep us warm. The person driving me was getting cold too.

Pat: We were at a meeting, and we kept hearing them call something the Highland Express. I said, ‘What are you talking about?’ They said, ‘Well, we bought a golf cart for Blake to take him from school over to theater class so he doesn’t have to navigate the stairs. Truth be told, we’ve wanted one for a long time, but this was a great excuse.’

The administrators and the teachers have been awesome. Our biggest concern was, when we left Live Oak, there were 24 kids in his grade. We knew everybody. Everybody knew Blake. They were like brothers and sisters. They took care of Blake. They were really concerned. My fear was, ‘Are they going to mess with Blake [at China Spring] because of his current disability?’

Blake: I’ll mess with them back.

Pat: I’ll tell you right now, it’s been incredible. First of all, there’s not one person I’ve met that hasn’t been endeared by Blake.

Blake is just the most warm, sweet, happy, funny person you’ll ever meet. They’ve got kids who will walk him from class to class. They have welcomed him so well in this school.

Blake: I was a tiny bit, I wouldn’t say a whole lot, probably 0.01 percent scared.

Pat: He was ready to start meeting new people.

WACOAN: Have you met any girls?

Blake: Oh, yeah. Don’t worry. The whole cheerleading squad knows my name. Don’t tell them, but I don’t know their names.

Cindy: Is that one of your struggles?

Blake: Yes. Names are one of my struggles. Yes, ma’am.

Cindy: He still can’t tell us who he sits with at lunch.

Pat: [Shows a picture on his phone of Blake surrounded by five young women.] This was from his first day at school. We were so scared, so nervous. And we get this picture sent to us.

WACOAN: I’ve never been in that situation.

Pat: Me neither. Seriously, when we go out and about in Waco —

Waco is the greatest community ever. I’ll tell you right now, we’ve fallen in love with Waco. We’re not leaving Waco. There’s not a place in Waco where we can’t go and people will say, ‘I’ve been praying for you.’

People who had been getting a divorce have said, ‘Hey, you saved our marriage. We’ve seen what you went through and how you fought. You as a family came together.’ All these cool stories about people and how Blake has impacted them on his journey. We’ve seen miracles.

Someone who hadn’t spoken in over four years spoke for the first time.

Blake: At Ronald McDonald House, I went up to this kid, and I was just talking with him, and I [said], ‘Where’s your mom?’ He said, ‘She’s over there.’ I go and ask her name and said, ‘I was speaking to your son over there,’ and she [said], ‘What are you talking about? He has not spoken in over four years.’ He was talking perfectly, and she was amazed. I had just gone over to him and [said], ‘What’s up? What’s your name?’

Pat: [The son] had muscular dystrophy, and he became very secluded, and he only spoke to his mom and nobody else. He had deteriorated over time. It was just Blake’s positive attitude.

And Miss Diane, who’s in this room over here, she’s 60 years old. She was 58 or 59 when she had a stroke. And Blake met her at the neuro rehab center. She has a master’s in accounting and retired from Deloitte & Touche [now Deloitte] when she was 55. She had bad stuff happen to her as a child, and when you have a stroke, your filter goes away, so she went through all that again and went to counseling. She couldn’t talk very well and didn’t have any feeling in her right arm. She was going through a lot, and Blake, at lunch, would make her smile and love on her and get her joking.

A year ago Halloween, Cindy called me and said that Blake had asked Miss Diane what her favorite meal was, and she said, ‘Steak.’ He said, ‘My dad makes the best steak.’ She said, ‘I’ll have to try it sometime.’ He said, ‘Why not this weekend? They came down that weekend.

Long story short, she lives with us full time now. She’s like Blake’s grandma. They have this incredible bond and went through so many things. She’s a wonderful woman, a faith-filled woman. When she prays, watch out. It’s getting answered. She helps take care of Blake. She can drive again, so she picks up Blake from school. And she helps him with homework or studying. She’s just become part of our family.

Blake: And she goes to Bible study.

WACOAN: When you said, ‘In the room over there,’ I thought you were illustrating her room at the rehab center or something. But she’s right here.

Pat: Let me introduce you to her.

Diane: [Diane enters.] Hi. I’m Diane.

WACOAN: So, you were having lunch with Blake, and he said —

Diane: ‘What’s your favorite meal?’ When I said, ‘Steak,’ he said, ‘Oh, my dad makes the best steak in the world. Mom, can she come down this weekend?’ We came to McGregor. That’s where they lived at the time.

Pat: We had a golf [tournament raising money for Blake’s expenses]. Cindy allowed [Diane] to drive the golf cart and get out and hit the ball because she used to be a golfer.

Diane: They had a golf outing for Blake, and I love golf. We all went. Blake was riding [in the golf cart] with his dad, and I asked Cindy — and I didn’t speak as well then as I do now — ‘Can I drive?’ She said yes without hesitation. Not only did she have faith, but she proved she had faith when I got behind the wheel. Then the guys let me [hit] off the tee box. That was way cool.

Pat grilled some steaks, and he prayed that full restoration would come to my voice and to me, and of course, continued prayers for Blake.

Pat: We prayed over her for full restoration that Saturday night. We said, ‘Do you want to go to church with us tomorrow?’ She said she did.

Diane: The next morning, Shadow, [one of the family’s dogs], came into the room I was sleeping in. He kind of nudged my hand, and I [said], ‘You want to go outside, Shadow?’ I said it in my regular voice. I didn’t really realize it at the time. I got up and let the dogs out and said, ‘Wait a minute. That was my voice.’

That was the first time I had heard my voice since April 27. I was real excited.

I thought, ‘Maybe I can drop some pots and pans and wake [the family] up.’

Pat: I woke up the next morning because I was going to make Belgian waffles and get everything ready. It was 6-something in the morning, and she’s sitting on the couch, fully dressed, ready to go. I said, ‘Good morning, Miss Diane.’

Diane: So I’m in the living room, fully dressed, and Pat comes in, and I said, ‘Hi, Pat. Good morning, Pat.’ I don’t think he really realized what was going on at first.

Pat: She said [speaking clearly], ‘Good morning.’ She said, ‘Do you hear something different?’

She said she had leaned over to pet Shadow, and [she] heard her old voice again [from before the stroke].

We went [to church] and worshiped, and she has the most beautiful singing voice.

Diane: That was pretty cool. I got my voice back and went back to [Centre for Neuro Skills], and everybody said, ‘What happened?’ I said, ‘My God is big. Our God is big. He restored my voice.’

Pat: She went back to the neuro rehab center on Monday and [the staff said], ‘How can this be? What happened?’ They were crying, all these therapists and doctors.

Diane: I eventually started getting stronger because [the stroke] affected the right side of my body. I was able to start driving again in March. I still have difficulties. I was an accountant, but I can’t do that. Right after the stroke, I had first grade level reading. I’m probably at a 12th grade level now. But that’s improving as I do more and more.

WACOAN: When did you have your stroke?

Diane: April 27 of 2014.

WACOAN: Then you came to their house for that weekend when?

Diane: October 31 of 2014, to visit.

WACOAN: How did you end up living here?

Diane: Blake had his titanium plate put in his head at Cook Children’s. I live in Arlington, so I went to see him. Pat and Cindy said they were looking for somebody to come live with them and help out with Blake, and they knew I loved him as much as they did. They asked me, and I felt like that’s what God wanted me to do with my life at this time, be with this family and be part of this family and love on Blake, and in turn I’m being loved as well.

Blake and I, we have kindred spirits. We know what it’s like when something’s up here [in our heads], and we can’t get it out. We relate really well to one another. When I encourage him, he in turn encourages me. It just works really well.

Blake: May I speak?

Diane: Absolutely.

Blake: OK. I knew that she was having a hard time paying for the place where she was staying, so I said, ‘Dad and Mom. Why don’t we ask her to come live with us?’ So that’s how this came about.

WACOAN: What does Miss Diane mean to you?

Blake: More than I can say. I don’t even know how to put it into words. She’s kind of like a second mother. My Momma D, yeah. I just love her so, so, so much. I know I won’t do justice with what I say. Yes, sir. She is great. We like to play games on our phones and on our tablets.

WACOAN: Diane, what does this family mean to you?

Diane: Oh, wow. I don’t know if I can tell you without crying. Even though this family is not blood, it’s much better than blood. It’s someone who loves me unconditionally, who accepts me for who I am. It’s a safe place here with this family. It’s good to know that you have the unspoken word that you’re accepted, you’re loved and you’re appreciated. Like Blake, these words aren’t justice for what this family actually, truly means deep, deep in my heart.

Blake: Words just can’t describe —

Diane: They haven’t been invented yet. When you say you love someone, it’s not like saying, ‘I love ice cream, or I love tennis or golf.’ It’s, ‘I love you.’ It’s deep. It’s tangible. Their actions say that they love me, not just their words.

WACOAN: I don’t want to get too personal, but the way you phrased that, that this family loves you unconditionally and accepts you for who you are, it sounds like those things might not have been —

Diane: That was not my upbringing. I didn’t know a healthy love from a man — father, husband, brother. Or what a healthy love from a sister or a mother is. This family has shown me healthy love. That’s more than money can buy.

WACOAN: Where do y’all go to church?

Pat: Antioch Community Church for five-and-a-half years, ever since we moved to Waco.

WACOAN: What have the people in your life group and the other people from your church meant to you during this time?

Pat: My life group was incredible. There are so many families, and it’s not just church family. Antioch is a family, but we had Live Oak families that were unbelievable. We have almost 14,000 Facebook followers that are family. Those people were the ones early on. We didn’t know these people.

The other one is the Dwyer Group. Oh, my gosh. That was the first semblance of support that we had. Debbie Wright-Hood, who was the chief administrative officer for the Dwyer Group at the time, she was there to coordinate and inform all the Dwyer Group people. From the top down, Dina [Dwyer-Owens, co-chair of Dwyer], showed support in every aspect. I was gone from work for a long time. I was in Fort Worth six weeks before I really came back for the first time. I came back and would work for a day or two then go back. They supported that. It was amazing the support of the company. The Dwyer Group is an incredible organization. The loyalty they showed us, I’ll never be able to repay. But they’ve got my loyalty for life at that company.

Cindy: When Blake had the accident, we called a couple of people from the hospital. And you should have seen that waiting room. It was packed full, from Bible study to church to school to people from our neighborhood. People just came down. I could not believe how many people came so fast. We thought about leaving Waco for the first year [or] year and a half, then this happened. Now there’s just no way. We wouldn’t have had the support up in the Dallas area that we’ve had here.

Pat: And the Ronald McDonald House. Oh, my gosh. The greatest organization you could ever support. Their full-time job is to try to comfort people who have gone through the most devastating thing they’ll ever experience. When you’re relocated a hundred miles away, and your son is struggling and suffering, fighting every single day, you don’t know where you’re going to stay. We slept in the [hospital] for the first week. We needed a place to shower, a place to rest for a few hours. And the families we met through there. We’re still supporting them, and they’re supporting us.

WACOAN: Blake, graduation is happening in a couple of years. What do you want to do after high school?

Blake: I really cannot tell you. I’m thinking about becoming a police officer.

WACOAN: Why do you want to do that?

Blake: Because my heart has always been out for helping people and protecting people. I would like to do that. When I was younger, I wanted to be a Navy SEAL. After my brain injury I don’t think a Navy SEAL will be a good job for me because I want to stay around and be with my family, my wife and my kids. Becoming a police officer would be great. You’re still protecting people.

nicole_woodardNicole Woodard has been living with multiple sclerosis for 21 years. Some mild symptoms first appeared, and then one day when she was walking her dogs — Mollie, the Boston terrier, and Gypsy, the Chihuahua — a more serious issue arose.

Nicole and her husband, Bob, who are both 46, will have been married for 24 years this summer. She’s from Abilene; he’s from Plano, and they met at Baylor University. She taught elementary school, including eight years at Midway’s South Bosque Elementary School before retiring. Bob is an accountant at Jaynes, Reitmeier, Boyd & Therrell. They have two children: Kade, a 19-year-old freshman at Baylor University, and Korbyn, a 15-year-old freshman at Midway High School.

WACOAN: How did you find out you have MS?

Woodard: This spring will be 21 years, so I’ve had it for a long time.

I had my first little symptoms with it in ’95, my first year to teach, which is always stressful. At first I called it a tingling, but now it’s a loss of sensation in my fingertips. I went to my longtime doctor in Abilene. He prescribed some things — anti-inflammatories — and nothing changed. It just wouldn’t stop.

I had a very good friend I went to church with who was a physician’s assistant. He said, ‘You know, maybe we should just run you for an MRI,’ because at one point he had worked for a neurologist. I went and had an MRI, and it showed up right off the bat.

WACOAN: How did it show up?

Woodard: It showed up in my brain. They took an MRI of my brain.

What happens with MS, your immune system has bad cells, and it attacks your nervous system. It really attacks the myelin sheath, which is the covering on the ends of your nerves, and it eats away at it. That’s where it starts, and it does other things too. I’ve met so many people who believe they have it, but they just can’t get it to show up on a test result.

But my symptoms initially and for the first 15 years were really sensory. It’s hard for me to pick up something that’s really small because I can’t feel it. I have heat sensitivity a little bit. I just have to watch that. When it’s hot outside, it would get to me, so we had to be really careful.

We’ve been to Disney World twice in the summer. We went in June before it got super hot, and we’ve been to the beach. I just knew to get in the shade when I could and not overdo it. It never affected my muscles or anything until about five years ago.

WACOAN: And what happened five years ago?

Woodard: It started affecting the way I walked. It was just really weird. I was always somebody who walked. Then I started running. I always said I would never run unless somebody was chasing me. But then I started and actually ran a couple of 5Ks.

Stuff was happening at work, and there was a lot of stress that was involved. I do not know to this day — and of course, you’ll never know (everybody with MS is different) — if it was my stress that pushed me over, or if it was just going to be the natural progression.

WACOAN: Were you at South Bosque?

Woodard: Yes, at South Bosque.

I applied for a job before any of this happened as an instruction specialist for math. So I did that, loved it. It was totally different. I did miss the regular classroom. Well, then we had economic woes, and so they cut that position, and I went back to the classroom. I really wanted to go back to fourth [grade], but that was not the plan. They put me back in third. In all of that there was a lot of stress. And like I said, I’ll never know if it was all that stress that caused it.

We have Scott & White [health insurance], and of course, there is no neurologist here in town that [takes] Scott & White, so I always had to go to Temple. I had a doctor there. When I first started seeing him, he [said], ‘I think it’s miraculous that you do so well having [MS] so long.’ He even sent me for another MRI.

I took shots. I started the Avonex shots in ’98. It was a shot that was once a week.

WACOAN: What did the shot do for you?

Woodard: It was supposed to help prevent the progression of the disease. Obviously, at this point there was progression, and the doctor who I was seeing at the time in Temple sent me for another MRI and [said], ‘Yes, there has been progression.’ He switched me to Copaxone, which is another shot. That was every day. It was not a fun thing.

WACOAN: Were you able to give yourself a shot every day?

Woodard: Oh, no. I had Bob do it. I know several people who do give themselves shots. Bob always gave me my Avonex shots, but that was once a week. It was not that big of a deal. This was an adjustment.

But then I could tell that things were continuing to get worse. About that time I decided to quit [working] because we were financially in a place where I could do that. Kade was going to be a sophomore in high school, and Korbyn, she was going into fifth grade, and that was [at] River Valley [Intermediate School]. I [substitute taught] for two years at South Bosque, and really, really loved that.

In the meantime I was not really getting what I felt like I should be getting from a doctor. I have a friend who has MS as well, and she told me about this doctor who was in the Scott & White system in Round Rock. Because he was in the Scott & White system, I could just call; I didn’t have to have a referral. He’s a general neurologist, and his specialty is more Parkinson’s [disease]. He convinced me to get on this drug, Gilenya, which is a pill. You have to go through insurance, so it took me about two months to get on it.

WACOAN: And what did this medicine do for you?

Woodard: It kind of pulls back your immune system because your immune system has cells that attack your nerves.

When I started the Gilenya a year ago in September, I had been told two different things. I had been told that it was primarily to stop progression, but it was also maybe going to help some symptoms. Then I found out that helping the symptoms was not true. The lady who told me that worked for the doctor. That’s what she had gotten from a pharmaceutical rep.

At that point my risk for infections grew, and my husband said, ‘There’s no reason for you to continue to sub.’ I had never really gotten sick from [being around] a kid, but he said that didn’t matter: Why would you risk it? So I stopped [teaching]. That was a year and a half ago.

But what happened in May [was] I used to walk half a mile every day. Walk my dogs. Early May, I’m walking along and thinking about things I have to do, thinking about how Kade’s about to graduate. Just walking, just normal. And all of a sudden it totally felt like my left leg was about to give out. When it did, it was like a little inner warning, and I just knew to sit down. I didn’t want to fall forward or anything. I got right back up and continued walking, then the same thing again. I cut short my walk. I went down four times in the walk. I got home, and I called Bob: ‘Oh my gosh. New symptom. This is what happened to me.’

I called my people at Round Rock and went down there [for an appointment]. It’s basically a muscle spasm that was in my left leg. They wanted to give me more muscle relaxers. They just couldn’t really understand. What the problem is, nobody can see it. It’s on the inside. It’s internal. I went through all sorts of MRIs, and nothing, according to the neurologist, had changed. I just kept getting frustrated because they just couldn’t find the answer.

In the meantime I just stopped walking. When I’m home, I never use a cane, but when I’m out in public, I use a cane, just in case. My leg just kind of freezes up for a second. I just go on; it’s no big deal. For me, now, most of the damage is in my spinal cord, and that’s why I started having problems with walking. What has changed for me is something called spasticity. That’s your muscles. When I walk, I walk very stiffly now. And there’s pain.

I started doing research and thought, ‘I need to get to an MS specialist.’ UT-Southwestern [Medical Center] has an MS clinic, so I contacted them. They were out of network, I thought at the time, but they did have privileges with Scott & White. I figured that out later.

I got in to see a Dr. [Darin] Okuda, who is an MS specialist. My husband and I went at the end of October. He was amazing. He’s from Hawaii. A friend of mine who’s a sorority sister who works for a neurology group in Tennessee, said, ‘Oh, my God. Dr. Okuda. Everybody in my office says he’s great. He’s really nice-looking, and he’s been in movies.’ They had sent everything to him from Scott & White. He had all of my MRIs. I totally trust Dr. Okuda because he does MS research. He said, ‘This is what I think is the best for you right now’ because I had handled Gilenya so well, and Gilenya kind of pulls back your immune system. This [treatment] pulls it back a lot.

He listened, and he talked to me about things I could do. He told me that some of the medicines they had put me on, ‘Stop taking that. That does more harm than good.’ He told me exactly what to do, and he told me he wanted me to try a newer drug called Lemtrada. That’s what I’m going to be doing this time next week at UT-Southwestern in their infusion center in Dallas. It’s five days’ worth of infusion. And the infusion goes in and knocks out these bad cells in your immune system. So basically it eliminates your immune system. Then your immune system will build back up. They’re trying to attack it that way. They’ve had good results with it.

I will have to go [to Dallas] every month for at least five years and have urine tests and blood tests. Your risk is elevated for thyroid cancer, skin cancer. I will have to have skin checks done every year. I’m fair-complected. I need to do that anyway.

When they do it, you have to be at the infusion center. Even though the infusion takes four hours, you’ll usually stay there for six to eight hours a day because they want to watch you to see what your reaction is.

WACOAN: You’ll be in Dallas for a week, and each day they’ll give you an infusion. How will that work?

Woodard: It’s like an IV drip. I’ll do five days this year, and then a year from now, I’ll go back and do three more days. MS is different in every single person, and every single person has a different reaction to things. My understanding is that the first week goes really well, but of course, you’re being monitored. The first part of the week, they’ll put steroids in too. Then it’s the week after, whenever your immune system is totally shot, that’s when you feel the worst, supposedly.

WACOAN: The next week, when your immune system is shot, you’re back home. What can you do during the first week at home to prevent sickness?

Woodard: I think stay away from everybody. Drink lots of water. I’m supposed to be drinking 64 ounces of water a day. And I don’t drink water. I’m not a water drinker. And no caffeine and no alcohol.

WACOAN: Which one of those is going to be harder to give up?

Woodard: Well, I usually start off the day with a small Dr Pepper. I don’t drink coffee. And I usually have a glass of wine at night. But you have to do what you have to do. And as the Lemtrada nurse said — the drug company assigns you a nurse — she said, ‘Your kidneys are going to be working so hard to get all those drugs through your system. If you have caffeine or alcohol, that just means your kidneys are going to have to work even harder.’

I feel the Lord allows things to happen to you for a purpose and a reason. As long as I taught school, in my mind, I [thought], ‘I’m here to teach the next generation and hopefully be an example.’ So when I stopped [teaching], I thought, ‘What’s my purpose?’ My purpose will always be being an example for my kids or trying my best to be an example for my husband and my friends. But you need a purpose. I feel like I’m walking down this road because there are a lot of people who deal with a lot of conditions [who] are in pain a lot. That’s something that I’ve dealt with a lot in the last 12 years is the pain of it.

It makes me sad because I’ve had to pull back from a lot of things. I can’t go and do the things I want to do. We used to go all the Baylor football games and all the Baylor basketball games, boys and girls. I just don’t do that anymore. I did this year get to go to all the football games except for one, which was in the rain. I never went [in 2014] because of the heat, mainly. This year I had to go because [Kade] ran the Baylor Line.

WACOAN: Is MS hereditary?

Woodard: It can be. When I was first diagnosed way back in ’95, we did come to an MS specialist, Dr. Ted Phillips, in the Dallas area, and we met with him because we were just about to start thinking about starting a family. We had been married three years at that point. He said, ‘Really, since nobody in your family has it, I would spend more time worrying about who your kids’ friends are going to be and the kind of people they’re going to be rather than worrying about whether they’re going to get [MS].’

But it’s a journey. It’s always a journey. For so many years [MS] was never a factor. But it’s such a factor now. If affects everything I do. I love to cook, but I have to literally plan out what I’m going to do in the morning. If I have to stand and chop stuff, I try to make things where I can do all that in the morning. As the day goes on it gets harder and harder to stand.

The thing that has changed the most for me is not being able to be as active as I once could. I used to walk three miles a day, and then I got to a point where I could still get that half mile in with the dogs. Now that’s not possible.

I’ve tried to do things. Bob stretches me every morning. We do the basketball [player] stretch. I’ve been to physical therapy. There are yoga things I do. But I feel like I need a little more than that. It’s rough not to be as active as I was. That drives me nuts.

Bob is the half full, and I’m the half-empty person. Always, even before any of this, it’s just how I was. And I’m overanalytical because that’s what you do as a teacher. You have to immediately come in and figure out, ‘What does this kid need?’ But [Bob’s] the one who always needs to have the hopeful side of things.

When we went up there to see Dr. Okuda, Bob and I talked all the way up there. We didn’t have a whole lot of hope that anything was going to change. He asked Dr. Okuda, ‘Tell us something that’s hopeful.’ [Okuda] said, ‘Well, this is a new drug, and it has done some great things.’ Bob said, ‘Will she be able to get some of her faculties back?’ He said, ‘She should, yes. Trust me. This is on the cutting edge of research. There are so many things coming down the line.’

WACOAN: Did he give you a timeframe about getting some of your faculties back?

Woodard: No, because it just depends. Everybody’s different. I know a couple of people whose symptoms are totally different than mine. We all have it in our brains or wherever it is, but it affects people differently. I know some people who the cold really bothers them. Other people, the heat. For me, it’s the extremes of either. Two years ago when it was so cold, I had never been in a winter that was that cold for that long. It was just miserable.

WACOAN: With the loss of sensation in your fingertips, did that affect any of your hobbies?

Woodard: Yeah. There was a time when I started quilting. I went through a quilting class, and I have the top of a quilt, and it’s in my mom’s house. She was going to do the quilting. She has Alzheimer’s and never got it done. I’m going to find that quilt top and bring it home and find somebody to do the quilting.

WACOAN: If you were inclined to do the quilting, would you be able to?

Woodard: I don’t think so. You have to have a sensitive touch to sew.

WACOAN: What are you learning through this?

Woodard: I wonder now if my purpose in life is to be a voice for people with chronic conditions. To know that you’re not alone. To know that there are other people out there who are in pain and have experienced the pulling back of things and the loss of things. It’s almost a grief thing, sometimes. You grieve the things that you can’t do anymore.

WACOAN: What have you lost?

Woodard: I can’t run. I can’t walk [easily] right now, and that bothers me. We’re going to Disney World in March, and I love Disney. We love Disney as a family. At first, I said, ‘I can’t go. I can’t walk.’ My family said we could get a scooter, and I can ride the scooter. So we are going.

WACOAN: But if you’re in an electric scooter, don’t you get to go to the front of the line?

Woodard: The things that you research that you never thought you’d have to research! You can actually rent them from a place in Orlando. They’ll bring them to your hotel. If there’s a problem, they’ll come and fix it or take care of it. That’s what we’re going to do.

You’re processed now at Disney. You just can’t pull up in a wheelchair or a scooter and get to the front of the line. They had so many people trying [to take advantage]. They would pay handicapped people to come and be part of their group. Now you have to go, and they assess you at the first park you go to. I understand why they have to do that. We’re going on March 3, and since my birthday is March 4, I’ll be at Disney on my birthday. That’s a huge thing.

WACOAN: Heading into your treatment next week, are you nervous? Excited?

Woodard: Both. That would be accurate.

I’m hoping the journey I’m on will speak to my kids. I hope it speaks to other people. I feel like maybe I should be writing more and sharing more than I do at this point.

WACOAN: How have you shared your story?

Woodard: I do on occasion. Facebook. I do put some stuff out there. But I do need to do a better job of sharing it more. I need to get a blog going.

WACOAN: What else do I need to know?

Woodard: Oh, my gosh. It’s important to always have hope and surround yourself with those who have hope. For me, that is Bob. And friends. I have great friends. Next week when I’m gone, one of the ladies who works in the office with Bob is coming to stay here and take Korbyn [to school]. [Korbyn] has several friends who are in Goal Tenders and her dance group who are picking her up and taking her from school to home. That’s hugely appreciated. We couldn’t do it without that. We need that.

scott_johnsonFour years ago Scott Johnson was at home with his 12-year-old son, Cayden, when he collapsed from a stroke in his brainstem. After more than a month in the hospital and countless hours in rehabilitation, Johnson’s speech and memory still remain affected. But through this experience he has learned to cherish every moment — simple pleasures, like going to his son’s baseball games. Wacoan editor Caitlin Giddens met with Johnson to discuss his stroke, his new healthier lifestyle and what he’s learned.

WACOAN: When was your stroke?

Johnson: March 5, 2012. I was 37 years old.

WACOAN: Were there any warning signs?

Johnson: None that I remember — it happened suddenly. When I look back, I see the daily stress I had leading up to the stroke. I’ve learned there is nothing worth worrying that much about.

WACOAN: Tell me about March 5, the day of the stroke.

Johnson: I was at home with my son, Cayden. He stayed home from school that day, and it’s a good thing he did. He was lying on the couch, and I was sitting down. It was 9 or 10 a.m. when I started feeling weird sensations. I knew something was wrong. I told my son to call 911, and then call his mother. Then I hit the floor.

WACOAN: What happened next?

Johnson: I don’t remember much. Cayden said he called the ambulance and then my wife. Nicole works at China Spring Elementary School, which is about four miles from my house. I was lying by the door when she arrived.

The only thing I remember is that I couldn’t stand up. I remember when the paramedics arrived. They shocked me three times. Everything was black. I woke up for a second, and then everything went black again.

It’s hard to relive it all because I haven’t talked about this in a long time.

If my son hadn’t been there that day, I wouldn’t be talking to you. He picked a good day to stay home from school. He saved my life. I’ll owe him until I die, hopefully of old age.

WACOAN: Do you remember what the stroke felt like?

Johnson: One second the lights were on, and the next was total darkness. Total blackness is scary. I remember a tingling sensation and not being able to open my hands. It’s hard to explain — you’re there, but it’s like it’s not happening to you.

WACOAN: Do you remember getting to the hospital?

Johnson: I remember riding in the ambulance. I remember when they removed the catheter; I remember that like it was yesterday.

WACOAN: How long were you in the hospital?

Johnson: I was in [Baylor Scott & White Hillcrest Medical Center] for more than 30 days. I was unconscious for part of that time, so I don’t remember much. Every time I woke up, there was a room full of people. My mom, wife and kids hardly ever left.

My wife made sure that the kids continued with their daily lives. Cayden was playing baseball, and she made sure he made it to his games. Makenzie was in the fourth grade. Life had to go on. My wife still went to work, and my kids went to school. But after school, they were all at the hospital.

WACOAN: Do you remember anything else from your stay in the hospital?

Johnson: They gave me medicine, and my brain started hemorrhaging again. I almost died. I was in [intensive care] the whole time I was in the hospital. After I got out of the hospital, I couldn’t walk or talk. One of my eyes was swollen. I looked like I had been thrown down a flight of stairs. I was in rehab [at Scott & White Waco Rehabilitation Clinic at Hillcrest] for about 30 days.

WACOAN: What was rehab like?

Johnson: Rehab was tough. The nurses made me work hard. I had a lot of people pushing me in rehab. They assured me there was light at the end of the tunnel, so I worked hard for them and for myself.

My family was up there all the time. I used to get in trouble for having too many visitors.

WACOAN: After staying for so long in the hospital, what was it like coming home?

Johnson: Wonderful. The first day I was let out of the hospital, I went to my son’s baseball game. That was good for me — it kept me going.

WACOAN: When you went home, did you continue your rehab?

Johnson: I had to do rehab at home. I still do rehab with bands to keep my body mobile.

WACOAN: What was the most challenging part of coming home?

Johnson: Not being able to do the simple things. I can’t go outside and play catch with my son because I have double vision. I tried playing catch, and I got hit with the ball. My daughter does competitive cheer at Texas Dynasty Cheer & Gymnastics. I used to help her with stunts, but I’m scared now. I won’t spot her when she does backflips. If I do the wrong thing, she could get hurt.

WACOAN: Did the doctors tell you what caused your stroke?

Johnson: He told me my blood pressure was high because I was too stressed.

If I could tell people anything, I would say don’t worry about things. Stress is a silent killer. I didn’t believe that before my stroke. In rehab, they said you could be stressed and not even realize it. I didn’t realize I was stressed.

WACOAN: What causes a stroke in most people?

Johnson: Stress and high blood pressure. Being overweight and not getting regular exercise. If you worry about things too much, it’ll catch up to you, whether you’re 38 or 68. I think the majority of people are like I used to be. They worry about things too much. Those things seem so minute to me now.

WACOAN: What else did the doctors tell you?

Johnson: They said 70 percent of my brain died when I had my stroke. It cut off the oxygen to my brain. When you look at a CT scan, 70 percent of my brain looks gray. It’s shocking to see.

WACOAN: How has the stroke affected you physically?

Johnson: My hands will shake. My speech is nothing like it used to be. I feel tired all the time. My knees ache most of the time, even four years later.

Since the stroke I’ve had double vision. I have to wear glasses now. Before the stroke I had perfect vision. I went to an optical neurologist, and he told what happened. When the blood was cut off to my brain, my optical [nerves] were killed.

WACOAN: Tell me more about how the stroke has affected your speech.

Johnson: It’s like I’m not fluent anymore. I can’t think of the right word most of the time. My voice has changed. I have a hard time saying certain words. My speech has gotten better because I went to speech therapy. It felt like I went to speech therapy every day, and I hated it.

WACOAN: How have you dealt with these issues?

Johnson: I’ve adapted to it. I guess over time my brain has rewired. I’ve figured out how to do things a different way.

WACOAN: How has your family adjusted to life after your stroke?

Johnson: They’ve done great, but it’s been hard for everyone. It’s hard when you can’t contribute to society and you can’t contribute to your family. You can’t give financially, which is what working is about. I can’t do that now. I can’t give the way I used to, but we’ve adjusted to the situation. We’re making the best of it.

WACOAN: Does your wife assume more responsibilities now?

Johnson: Yes. You name it, and she does it: laundry, yard work, bills, cooking. I used to keep the pool clean and help out. But when you only have 30 percent of your brain, you don’t have short-term memory. I forget what I’m doing. I forget to put chemicals in the pool. If I’m mowing the yard, I’ll go in the house and forget what I’m doing. It sounds like there’s no way that could happen, but it does.

WACOAN: How has this experience affected your family positively?

Johnson: We appreciate each other more. We know we could be here one day and gone the next.

I feel like I live in the past sometimes. I don’t remember what I did this morning, but I remember the trip my family took six years ago.

WACOAN: Do you think memory is something people take for granted?

Johnson: There’s no doubt. People take so many things for granted. When you’re lying in a hospital bed, you can’t even go outside and walk around. Right now, just sitting outside and drinking coffee — I don’t take that for granted anymore.

I notice things now that I never noticed before. My eyes have been reopened.

WACOAN: What else have you realized through this experience?

Johnson: My community in China Spring is like nothing I’ve ever seen. They’ve been there for us financially and emotionally. They had a benefit that lit a fire under me. It made me want to better myself as a person. It made me change the way I see things.

WACOAN: Tell me more about the benefit.

Johnson: Mark and Julie Roberts organized it and rented out a building. It was full of people. I had no idea that many people cared about my family. It blew me away. It still blows me away four years later.

WACOAN: Does the community still help your family?

Johnson: Yes, I could name names all day. I could tell you thousands of names — your computer couldn’t hold all the names of people who have been there.

WACOAN: How far have you come in your recovery over the last four years?

Johnson: I have good days and bad days. Today is a pretty good day for my speech. Two days ago, I couldn’t say five words. Everything I did was a labor, and nothing went right. When I have days like that, I have to persevere. I wake up the next day and try to do better.

My life has completely changed since the stroke, but I feel that it’s better in a lot of ways. I can slow down and enjoy the simple things in life. I notice things I didn’t notice before. I used to think nothing could hurt me. Nothing could stop me or kill me. Guess what: It can. If you’re not living right, something bad can happen.

WACOAN: Would you say you were living an unhealthy lifestyle before the stroke?

Johnson: I knew I needed to lose weight and live a cleaner life. But I didn’t do that because I thought nothing could hurt me.

WACOAN: What steps do you take to stay healthy now?

Johnson: I try to watch what I eat, and I watch my carbohydrates. I lost about 100 pounds when I was in the hospital, and I’ve kept about 75 pounds off. I’m working on getting the rest of it off now.

WACOAN: Do you see still see your doctors regularly?

Johnson: I see Dr. Kyle Hulme [at Hillcrest Bosque Clinic]. I see Dr. Andrew Day at Waco Cardiology Associates. I used to see Dr. Sally Borucki, my neurologist in Temple [at Scott & White Clinic]. I haven’t been back to see her because I’m doing OK. She told me I’m as good as I’m going to get.

WACOAN: How do you feel now?

Johnson: I feel unbelievably lucky. If my son hadn’t been there that day and if my family hadn’t been there for me in the hospital, I wouldn’t be here. I could be missing this. People need to realize that life is too short. It’s shorter than you could imagine. Cherish every moment and do everything you can with your time.

shawnna_latinoNurse Shawnna Latino, 45, hadn’t been married quite two years when she was diagnosed with breast cancer. Still feeling like a newlywed, Latino was enjoying life with her husband, Chad, her daughter, Bailee, 21, and stepsons Aidan, 7, and Tristan, 10. She works at Fish Pond Surgery Center. But before that, Latino worked at Providence Breast Health Center as a navigator, the person who helps guide a patient from the results of a mammogram to the next stage of treatment and who helps them and their family understand the diagnosis.

WACOAN: How ironic is it that you are now the one being walked through the process?

Latino: I can’t explain how ironic it is. It’s surreal. I can’t really explain how that makes me feel. I’ve walked so many other people through this.

Years ago I worked for a surgeon, and I had a good friend who died of breast cancer at a young age — a beautiful person. That is actually when I developed a passion for breast cancer. I never knew it was going to be a part of my life. But something inside of me said, ‘Do more. You have a passion for this. You need to do more with this.’ I didn’t know until years later exactly what that meant. Not many people get to have a passion for something and then get to experience what it’s all about. Most people go through something, like a disease, and then become passionate about it. For me, it’s the opposite.

WACOAN: Are you angry at all that you helped so many people through their breast cancer and now you have it yourself?

Latino: No. Not once have I been angry. I’ve not even shed a tear over my diagnosis. I never asked why. What happened is that I almost became thankful.

When I shed tears, it has nothing to do with my diagnosis. What it has to do with is the amazing genuineness that I have seen come out of people. It’s been humbling. You learn so much about yourself and others. And people who maybe you didn’t even think had goodness in them, you see that goodness in them. And that has sparked my faith in people, in God, even in myself.

There’s that saying that goes something like, ‘You don’t know how strong you are until you have to become strong.’ I’ve learned so much.

WACOAN: When did you receive your diagnosis?

Latino: I had yearly mammograms, just like you’re supposed to, basically since I was 40. I’ve never missed a year. Last August it was just my time for my yearly mammogram, so I went as usual to Providence Breast Health Center.

WACOAN: Where you knew everyone, right?

Latino: A couple of days after the mammogram they called me back, but I wasn’t worried. I had a breast lift in December, so I just figured it was scar tissue. I wasn’t worried at all. But I received a text from Dr. [Amy] McCourt, the radiologist there — who I worked with for many years and am personal friends with — and she said, ‘We need to biopsy this.’ But she didn’t seem too worried.

WACOAN: But she was concerned enough to do a biopsy.

Latino: That’s just the nature of things that are in a gray area. [When] you can’t say for sure, you’ve got to biopsy them.
And I actually went in and looked at the films with her, and I thought, ‘That kind of looks a little worrisome to me.’ I had calcifications in the milk ducts — not a mass, nothing you could feel. It’s something that can only be detected on a mammogram. I thought, ‘Those are all over that right breast. And they weren’t there the year before.’ But again, I thought, ‘It’s the [breast lift] surgery.’
So they scheduled me for a stereotactic biopsy. I still wasn’t worried.

WACOAN: Because you had seen people have tests that were positive, but turned out to be OK?

Latino: I’ve seen everything. I’ve seen people who were positive, but it turned out to be scar tissue that mimicked [cancer] on a mammogram. I’ve seen people who we thought would be negative be positive. There’s just no exact science to it. You know, nothing in medicine is 100 percent. So I still wasn’t worried.

WACOAN: Then you had to wait for the results.

Latino: Yes, and I didn’t want anyone to call me. I said, ‘I want you to send me a text because I used to give people the news, so I can tell right away by the sound of someone’s voice if it’s good news or bad.’ And I didn’t want to hear that. I thought [texting] would give me a minute to process it. So I got a text from Dr. McCourt, and it said, ‘I can’t believe this. It’s not what I expected. It shows DCIS [ductal carcinoma in situ], which is grade 3.’

WACOAN: How did you react?

Latino: Well, that was actually kind of good news to me at first because that meant it was contained within the milk duct and that it didn’t have a chance to spread anywhere. But I had those calcifications, and I knew that meant I had to have a mastectomy. There was no choice. Even with a noninvasive breast cancer I was going to have to have a mastectomy, and I was fine with that. I never got upset. I was like, ‘Let’s do this.’ Grade 3 breast cancer cells are rapidly multiplying and dividing — it’s a little more aggressive. The standard of care with grade 3 is to go ahead and check the lymph nodes.

WACOAN: You’re so strong. I’m not sure I could ever have said the words, ‘Let’s do this,’ regarding a mastectomy.

Latino: I opted to have a bilateral mastectomy [removal of both breasts] instead of one. That was my personal choice. I’m young, and I didn’t want to have to go through it again. I just said, ‘Take ’em both off. Don’t make me worry.’

WACOAN: Tell me about your family and how they handled all of this. What did you tell them, and how did they deal with your news?

Latino: I went straight to my husband’s office. You know, people at work were starting to find out, and I thought, ‘I’ve got to go let him know right now.’ So I ran over there at noon and told him my biopsy was positive. But I told him I’m going to be fine. I told him it was not invasive. I have to have a mastectomy, but I am not going to die from this, and I’m going to be OK. But all he heard was ‘cancer,’ and he couldn’t even finish out his day.

WACOAN: And did that make you break down?

Latino: No. I went back to work because that’s just what I do.

Nothing’s going to stop me; nothing’s going to get in my way. I’m going to keep on going.

I went home that night and told my daughter. My daughter had the same reaction. She didn’t hear anything other than that her mom had cancer. She got really upset with me. Instead of putting her arms around me, she said she didn’t want to talk and asked me to leave her alone. I tried to tell her I was going to be OK, but she wouldn’t let me explain. I went back about 30 minutes later, and she was sobbing. I just held her and said, ‘You’ve got to let me explain. I’m educated on this. I know what I’m talking about. I really do.’

Then I got both of them together, and within 30 minutes we were laughing.

WACOAN: Your mammogram was in August. How quickly did you begin treatment?

Latino: It was October. And I went to Austin for my surgery. I love everyone here in Waco, but the plastic surgery procedure I wanted is not done by anyone in Waco.

I had a reconstruction where they actually transplant the fat from your belly — it’s almost like a tummy tuck — into your breast. So after the mastectomy, the doctor did the transplant. It’s microsurgery, connecting all the blood vessels, and that’s why you have to stay in the hospital so long. They have to make sure the blood supply doesn’t die. I was there for almost a week.

WACOAN: Are you happy with the results of your surgery?

Latino: Well, I did not want implants. Nothing wrong with it, just my personal choice. Usually there is ongoing maintenance with implants, especially after mastectomy. You don’t have a ‘pocket’ to hold implants in place, and they can surgically create one, but they move around more. It’s literally skin and an implant. You can develop contractures and other issues that require surgical intervention throughout your life as well as replacing implants every seven to 10 years. (Some last longer.) Anyway, not for me.

I wanted to use my own tissue, something natural that aged with me per se. So after talking in depth to [my doctor] and knowing many past patients that had the same procedure and were happy with it, I chose this route.

It’s has been a long recovery. It was like a tummy tuck, but without cutting the muscle. I was pulled extremely tight. Didn’t have much fat to use. I still have and will have for six to 12 months a very tight sensation on my abdomen. The skin will eventually stretch, and it will ease up.

I had to walk hunched over for 10 days and sleep in a ‘v’ position to keep tension off my abdomen. Not to mention four drains — one under each arm and one on each hip, collecting the fluid my body was producing in excess to fill in the missing tissue that had been taken. I was able to get drains pulled after a week, and then I couldn’t stand being at home and still. I went back to work after 10 days.

WACOAN: That’s pretty quick.

Latino: Of course, I didn’t take patients, but I needed the interaction and just to do something! So I sat and did all the patient calls and called prescriptions out and did whatever could be done sitting down.

And my coworkers were amazing! I have the best work family. They took care of me, letting me be there and gave me work to do and making me take it easy despite my wanting to do more. I’m stubborn like that.

WACOAN: Were your friends aware of everything you were going through?

Latino: Yes, I was very honest and open from the get-go. I’m an open book. I love sharing the story. I love letting people know because education is power. So everybody knew.

WACOAN: How did people find out?

Latino: I didn’t go and post it [to social media].

What happened was we did Race for the Cure. All of my coworkers, who are like family, wanted to do this with me. And it [happened] real quick. My pathology [report] came back September 2, and by the end of September we were doing Race for The Cure. That’s when everyone found out because everyone was posting pictures from the race. My mother had just been diagnosed with breast cancer, just eight months before me, so everyone thought that I was supporting my mother. But then they started cluing in that it was for me.

I just let the chips fall. I’m not one to see someone and say, ‘Hey, I’ve got breast cancer.’

WACOAN: So you had that support of friends during your surgery?

Latino: Yes.

And the surgical pathology [report] gave me a surprise. What was supposed to be not that big of a deal turned into all four quadrants of my breast were involved with the calcifications. They were close to the chest wall, and with the calcifications they found invasion into the surrounding breast tissue. And it had started to migrate into the lymph nodes. They took five lymph nodes from under my right arm, and two of them had micro-metastasis, which are tiny deposits of cancer. So basically, that bought me chemotherapy, and I’ll get radiation as well.

WACOAN: Were you thinking, ‘Thanks a lot for that unexpected surprise?’

Latino: The surgeon walked in that day, kind of sad to give me the results. And I said, ‘All right, OK. Let’s do it.’ I was ready. I had to take care of other people through this. But me, I’m fine with it.

WACOAN: Where does that come from? Are you acting a little bit in order to make everyone feel better and not worry about you?

Latino: It’s me. It’s totally me.

I have a good friend, someone who’s dealt with breast cancer. She took me to my first post-op appointment, and on the way she said, ‘You know, it’s OK to cry. You don’t have to be this strong person. You can be upset and cry.’ I just looked at her and said, ‘I really am OK. Maybe it will hit me later, but I’m not sad. I’m not upset.’

WACOAN: Is that partly due to your medical background, that you know the advancements and options in medicine, especially in regard to breast cancer?

Latino: I think that has a lot to do with it.

Ever since I was a little kid, I have always found something positive in everything, even a speck of dirt. I’m very thankful God made me that way. I’m just not a negative person and never have been.

WACOAN: Have you been through struggles harder than cancer?

Latino: No, I can’t really say I have. I mean, you go through death, divorce, you watch other people suffer. But I’ve cried more for my patients than I have for myself. If they cried, I cried. It’s not being weak. You find strength in your weakness. You gain so much strength when you are weak.

WACOAN: What role has your faith played in your journey?

Latino: I’m not a religious person. I’m very spiritual. I give all the glory to God. He made me. He made me this positive person, and I’m very thankful for it. I’ve always been this way. It’s not an act. I’m not afraid to be weak.

WACOAN: Earlier you said that because of your cancer you’ve seen the best in people. Describe that.

Latino: I’ve seen pure love, caring and genuineness. I think most people see me as a strong tower of a person. And I think they have a hard time seeing someone strong go through something like this. But everyone has reached out to me. People that I haven’t talked to in forever reach out to say, ‘I’m thinking of you. I’m praying for you. You’ve got this. I’m here for you.’ This has gone on nonstop. I mean daily. I get messages from people, just lifting me up, letting me know they are thinking about me. How can I ever feel weak?

If ever I do feel weak — and I don’t mean feeling sorry for myself — all I have to do is go to my Facebook or my messages I’ve saved. I have a friend who made me a jar of positive affirmations. I just recycle them over and over. Every day I pull one out, and it says something sweet and amazing.

WACOAN: What has this outpouring of love meant to you or taught you?

Latino: One thing I would love for people to take from this is that even if you think it won’t make a difference, it does. One little text means the world. You don’t even have to pick up the phone. Someone leaned over to my husband at lunch the other day — someone he didn’t even know — and said, ‘We’ve been praying for your wife.’ I want people to know how powerful that is. It has carried me through, and I can’t imagine people who don’t have this support system.

So if you know anybody who is going through something, just let them know you are thinking about them. That is what has brought me to my knees. Not my diagnosis, not cancer. It is the people. It has humbled me so much to see people reaching out.

WACOAN: That emotional support has obviously meant the world to you. Being the strong person you are, how did you let people help you physically?

Latino: Well, I didn’t want them doing anything. But people brought me dinner. They cleaned my house. And you have to let them do it because they want to help. It’s so hard because I am a person who wants to do for others, and I feel like, ‘I’ve got this.’ But my husband told me, ‘Shawnna, these people want to help you. It blesses them to bless you. And you have to let them even though you don’t want them to be inconvenienced.’

I’ve thought, ‘I’m walking around. There’s no reason I can’t cook dinner.’ I learned that you have to let others do that because it makes them feel so blessed. And because of this I have been blessed over and over and over again.

WACOAN: Talk about living with chemotherapy. How is that going for you?

Latino: You hear a lot of horror stories about it, but a lot of those stories are from a long time ago when they didn’t have the good medications they give you [now] for nausea. I do one treatment every three weeks for a total of four treatments. So basically 12 weeks of treatment. I’m getting a regimen called TC [a combination of Taxol/Taxotere and Cytoxan], and I’m there probably three hours getting this infusion. My first infusion was December 16, and my second was [mid-January]. I just have two more and I’m done! I’m halfway done!

WACOAN: You’re halfway in, but you look great. Other than your hair, I’d never know. You don’t look sick.

Latino: I don’t feel sick! I’m tired, but everyone is different. I’ve been blessed, and I’m telling you, it’s prayer. After the first treatment I didn’t feel 100 percent. I had some flu-like symptoms and a low-grade fever. I had some trouble sleeping. It does something weird to your mouth, where it affects your taste buds. But not my appetite! The second treatment, I have just breezed through, knock on wood.

WACOAN: When did you lose your hair?

Latino: Twelve days after my first treatment I started shedding — lightly shedding. I had already gone from long hair to a short bob. And then I went to really short so it wouldn’t be such a shock.

WACOAN: Does everyone lose their hair?

Latino: With breast cancer treatment you’re pretty much going to lose your hair. I knew that. Five days after I started shedding, I woke up and a big chunk of hair came out, and I thought, ‘Oh, here we go.’

WACOAN: Did it scare you?

Latino: No, not at all. And I knew that was the day because I would rather be bald than have patches of hair. So I called my friend who is one of the owners of Salon Bellezza and said, ‘Today’s the day.’ So we got all my friends together, and we had a shave party. I didn’t want to shave my head alone. I wanted to make it fun. My mother-in-law said, ‘You know, it’s OK to cry.’ I cried for 30 seconds because I didn’t know how I was going to look, and then I sucked it up. It grows back. It will be OK.

WACOAN: So in a strange way, was it fun?

Latino: I called my friends, and we met at the salon. We had a bottle of wine and a bottle of champagne. And everyone took a swipe at my head with the shaver. I wanted everybody to laugh. We gave me a little mohawk. Yes, I can actually say I had a mohawk! And then we just buzzed it, and that was it. We toasted with a glass of champagne. They were all tearing up, but not me.

WACOAN: You have a beautiful head.

Latino: I’ve been told that! I haven’t lost my eyelashes or eyebrows, and I may not. Those are the slowest-growing cells. I’m playing up the eye makeup and doing lots of big earrings to create a different focal point. I’ve got hats and bandanas, but I usually just go without.

WACOAN: Are you following any special diet or holistic treatment alongside your medical treatment?

Latino: I’m going to be perfectly honest. The minute I was diagnosed, I said, ‘OK. That’s it. I’m going to start eating healthy.’

You see, my brother has stage 4 prostate cancer. So my mother, my brother and I all were going through treatment at the same time. My brother just finished treatment, and he eats very healthy, all organic, everything you’re supposed to do. I told myself I would do that. Being on steroids has made me so hungry that I just want to eat everything in sight. So I have not [started eating healthy] yet. That is my goal because I truly believe that cutting down on sugar and eating more natural and organic helps fight cancer. That is a proven fact. I will get there. That’s coming.

WACOAN: What’s is like going through cancer with your family members? Does it help not to be alone, or does it hurt to see them going through this?

Latino: My dad, bless his heart, is the only one without cancer. So he’s having to go through it with us. But I look at my mom and my brother and all they’ve been through, and they are the strong ones.

We’ve all got our gloves on, and we’re fighting together. We know exactly what each other are going through. We were always a close family, but there’s something about going through this that brings you even closer together.

My brother was living in Dallas when he was diagnosed, but he’s moved back to Waco to be with all of us. Now we see each other and talk every day. That’s a positive. You just focus on the positives. Your attitude is 110 percent of it.

WACOAN: How much do you think a positive outlook affects the actual disease?

Latino: Personally, I think it’s everything. I could be sad and depressed, but I think that can get a hold of you and affect you negatively. It can affect your body.

WACOAN: What about exercise? You look very fit.

Latino: I exercised a ton before. Since then I’ve gone to the gym, but not as much as I like. I do what I can. I lift weights, light to moderate weights. I do cardio, and I’m released now to do that completely. It was great to get released to exercise, but then you do chemo, and that makes it harder. It’s very important to keep yourself active. It really helps to try and spend even 20 minutes exercising to keep yourself in shape. It helps you mentally and physically get through the treatment.

WACOAN: Is your body completely healed from the surgery?

Latino: There’s a small part on my abdominal incision that’s not completely closed, so I have to go to wound care. I even had to put chemo off for a little bit until that healed. It’s almost healed, and when I’m finished with chemo, it will heal all the way. I do have to have another surgery, but that will be after radiation.
Something interesting: Throughout this I did the genetic testing — you know, like [actress] Angelina Jolie did, the BRCA [gene] — and it turns out that I’m BRCA 2 positive. They didn’t test my mother because she was 71 at her diagnosis, which is not completely uncommon at that age. But after I was tested, they tested my mother, and she was positive. So my destiny was that most likely, by the age of 50, I was going to get a breast cancer. [Editor’s note: Women with a mutation in either the BRCA 1 or BRCA 2 genes are at a higher risk for breast and ovarian cancer.]

WACOAN: So you didn’t know you had the gene until after your diagnosis?

Latino: Right. So my mom and I were both positive.

WACOAN: And what about your daughter?

Latino: That was one of the worst moments of my life, thinking I could have passed this gene down to my daughter. At 21 years of age she would have had to have a prophylactic bilateral mastectomy. You don’t have to, but to me, you’re playing with fire if you don’t. It’s almost not a matter of are you going to get it, but when.

WACOAN: Did she want to be tested?

Latino: Yes, she did. And she said, ‘If I have it, they’re gone.’

That was a weak moment — thinking that I could have passed this down to my daughter was a horrible moment.

WACOAN: How long did it take to get the results?

Latino: A week. And she was negative. She had a 50-50 chance of being negative.

When Bailee and I got that news, we were at home in my bedroom. My husband and stepsons were in the other room. I don’t think I’ve ever sobbed so hard in my life. It was a happy cry, but I couldn’t even catch my breath. I fell to my knees and sobbed, and I couldn’t stop myself. The boys came running into the room, and I said, ‘It’s a happy cry!’ I immediately started texting everyone — my mom, my brother and my daughter’s father.

WACOAN: Sounds like she inherited your ability to face things head-on with courage and strength.

Latino: She did. She grew up with me being a nurse. For five years of her life I was the [breast cancer] navigator, and she saw me help people through their battles with breast cancer. She watched me help my mother go through breast cancer. So she understands what it means to be strong, and she is. She has a positive outlook, and she was ready to face this head-on.

WACOAN: So what’s next?

Latino: Well, because I have the gene, I have to have a hysterectomy, so that’s next in line. I have to get rid of my ovaries because you have a greater chance of ovarian cancer. So when I finish radiation, I have to do that.

WACOAN: Does having those serious things looming dampen you spirit, or do you just view them as calendar items?

Latino: Get ‘em on the calendar, and I’m ready to check them off. By this time next year this is going to be all but a distant memory.

WACOAN: The U.S. Preventive Services Task Force, an independent panel of experts whose members are appointed by the federal government, issued new guidelines last month, stating that women should start getting mammograms at age 50. What do you say to that?

Latino: If I waited to have a mammogram until I was 50, I might be dead. I didn’t have a mass. There was nothing that you could feel. There was nothing that could be seen or felt by any professional. It was strictly because I had my yearly mammogram.

My mammogram was clear [the year before]. My cancer was seen only because of a mammogram, and I was 45. If I waited to have my mammogram when I was 50, we wouldn’t be having this conversation. I know there are exceptions to every rule. But that is a 100 percent true fact.

A mammogram saved my life because they had me do it every year from the time I was 40. I will be on Washington [D.C.]’s doorstep, if that’s what it takes.

WACOAN: So do you plan to become an advocate?

Latino: Yes, I do. Because I know firsthand that mammograms save lives. I have proof. I have walked the walk.

WACOAN: Are you or will you be cancer-free?

Latino: As far as we know, all of it is gone. The reason I’m having chemo is to kill any rogue cells that may have gotten off into my bloodstream or lymphatic system. It’s insurance.
I did a test that tells you if your cancer is going to respond well to chemo. My results said that chemo would benefit me maybe 10 percent and maybe not even that much. I don’t care if you tell me it’s going to benefit me 1 percent: Give it to me! I don’t want to look back and regret anything. If in 10 years I had a recurrence, I would have to wonder if I should have had chemo. You know, this is all short term.

WACOAN: You look at it as a small window of your life.

Latino: It’s a really small window. My hair’s going to grow back. I’m going to be able to use this experience to help even more people. It’s a short little blip of my life.

WACOAN: What do you want people to take away from your story?

Latino: I want people to know that they can do this. Attitude is everything. Give up or fight. Be happy or be sad. Being sad is work. I like to be happy and hug people. Why would I choose to be mopey?

I used to tell my patients, ‘You have every right in the world to grieve. It’s devastating news. It’s life-changing. But then you have to put your big girl panties on and fight. And I don’t want you to look back. Cross that bump in the road because there is a beautiful sunset on the other side, no matter what. You have to keep going.’

WACOAN: It’s overwhelming to see the kindness of people in your life. And you’re just one person! If we could treat others with such care, even when they’re not sick, what a better place the world would be.

Latino: That’s my prayer each day on the way to work. I say, ‘God, please bless all the people who have blessed me and please spread this to the world.’ If we could all just be this kind and generous all the time, what an amazing world this would be. There would be such peace, and that’s what I pray for every day.

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