Patient Educator & Caretaker
Life is filled with great joys and often sadness. Daphna met her future husband, Felix, at the young age of six years old. Years later, after graduating from college, they met again. The attraction was instant, and for the seventeen years they were married, they adored each other.
Throughout their marriage, Daphna stood by Felix through many medical trials and tribulations until he passed away due to metastasized melanoma. Daphna honors his legacy by trying to live life to the fullest no matter what happens. Today, Daphna works as a patient educator for the International Pemphigus Pemphigoid Foundation, speaking with dental and medical students and raising awareness about treatment for this rare disease.
Who are Jona and Rebeka?
Jona and Rebeka are a wonderful mix of my husband and me. When they were little, I would tell them that they were one part him, one part me and one part God. They are completely perfectly unique. So, like our Milo, the Chiweenie, part Dachshund, part Chihuahua, they each have a piece of us. They are the perfect mix.
You first met Felix when you were six years old?
I was six. He was nine. It was Fourth of July weekend, 1976. We lived in Philadelphia, and our families knew each other. They coordinated coming to see the Bicentennial celebration and staying with us. While they were there, my brother broke his wrist wrestling at camp somewhere in the mountains. My father was an orthopedic surgeon and a pediatric specialist, so he told them that nobody should touch him, just make him comfortable, until he arrived to fix him. We had a plane because my dad was retired Israeli Air Force and flying was his passion. I am guessing Felix’s mother wanted to go in the plane because they left the three kids (who didn’t speak a word of English) at the house with the babysitter, my friend and me. I remember Felix from the start. There were three kids, but he was the one that I remember. He was albino looking, and he was blind. At the time, I didn’t really understand legally blind. I just knew he was blind, and he was playing basketball. He was such a vivid image in my head.
Talk to me about your childhood. Your mother and father both are Israeli?
They are both Israeli. My mother was actually born there. At the time, it was called Palestine or the Mandate of Palestine. My dad was born in Germany in ‘33, but he ended up in Palestine before he was a year old.
Did your parents’ families suffer persecution in the Holocaust?
My dad’s mother/father did not. His grandfather, who was a leader in the community, apparently committed suicide by jumping out of the Gestapo headquarters. They brought him in for questioning. My dad’s grandmother spent time with the partisans in the fields and the forests in France. So many people perished in different concentration camps, but we were very lucky. My father’s family left Germany, and my mother’s family left Austria. They all ended up in Palestine in the German/Jewish community. My father’s parents were friends with Felix’s mother’s aunt and uncle. He lived with them when he was in medical school with Felix’s father.
What is your post-high school education?
I received my undergraduate degree in economics at George Washington University in D.C. and my graduate degree from Cornell in hospitality.
Let’s now talk about Felix. You reconnected with a call to him about employment advice?
I left him a message, and he called me back the next day. Within two minutes of conversation, he said, “You don’t really want to work in that situation.” I was like, “No, I don’t.” So he asked, “Why did you call?” I explained that my parents thought he might be able to give me some advice. We talked for two more hours, and we just kept talking. He was the nicest individual I had ever spoken to in my life. He heard things I didn’t say. That night I went out with a friend. When I got into her car, I remember telling her I had just shared the most enjoyable conversation with another human being that I had ever had.
Did he adore you?
Yes. We adored each other. It was very genuine, and it was very special. He was such an interesting person. He had a lot of characteristics so similar to my father. Not on the surface. My dad was very athletic, and my husband was not. However, they shared their strengths of character, their kindness, their ability to help take care of other people and to be considerate. Everybody who knew him loved him. The bank tellers still follow up with my kids about him. The TSA guys recognized him because he didn’t see well. He was really smart. People would see him and think something is not right with him. They wouldn’t know exactly what was wrong though.
He looked at things very closely.
He was born premature at 26 weeks. He missed the Guinness Book of World Records by one ounce because he was so tiny. His right eye had no retinal attachment, and the left eye had a quarter. As a premature birth, he was in an incubator. Although I think the U.S. was far more advanced, there was so much they didn’t know yet. At that time, they didn’t cover the eyes. He had no cotton over the eyes, and the lenses were scratched. He had a retinal issue and damaged lenses. Later on, he had eye surgery, which was frightening because full retinal detachment was a possibility. No one prepared us for what happened. His vision was actually better than ever. When he recovered from surgery, he saw things he had never seen before. It was amazing to witness his discovery of sight.
Did he have surgery before or after you were married?
After we were married. I think our daughter was in kindergarten, and our son was in preschool.
What happened when he saw your face?
He said that I did not look so different. He spent a lot of time close-up to us. It was the veins in his skin that he was most surprised by. He had never really seen gravel or a rainbow. When he saw a rainbow, he said, “You know, I think I’ve always imagined it like that.” Or a spider. That was another sight that he found fascinating.
How many years were you married?
Seventeen. It would be 18 coming up.
January, a year ago, what happened? Did Felix have health issues before that?
Because he was born premature, he had related eye issues and poor vision his entire life.
In 1995, he was diagnosed with melanoma on his leg. They took out two lymph nodes, and they said it was clear. He followed it up every year for five years. When he got the “all clear,” we lived our lives. In August of ‘15, my dad was not doing well. My mother just needed a break from caregiving. I said, “Go to New Jersey, take a break. I’ll stay with Dad.” That was her birthday gift. Felix was going to take the kids to visit a family friend. We had just been in Vienna for a while, and he said, “You know what? I’m so tired. I don’t really feel up to it. Let’s just stay at home. We’ll hang out in Boca, and we’ll have a little staycation.” They came over. They swam. Afterwards, when he was changing in my parent’s bedroom, he banged into a sharp edge, and it scraped the side of his leg. Blood went everywhere. I had him lie down and started to clean the wound. As I was doing first aid on his leg, we saw a red lump. He thought it might be a hernia, and I did not know. Neither of us had noticed it before. I thought it might be an infection. We followed up on it the next Tuesday. The doctor did not think it was a hernia. He decided to do an ultrasound, then an MRI and finally, a biopsy. They came back with metastasized melanoma. Twenty-year-old cells incubate in the body. The mutation he had was BRAFV600E; it was an “invisibility cloak.” The melanoma had been sitting there dormant for all those years. The body did not know it even had a problem. The mutation was twofold. It was invisible to the body, and then, the cell didn’t die. Anyone with melanoma has to really keep an eye out because it can easily spread throughout the lymph system. Unfortunately, melanoma is so aggressive—it spreads far and fast. You know, the liver, the lungs, the brain, the blood or the bones. At that point, it was in the lymph system, and we spent Rosh Hashanah that year at Mount Sinai in New York getting a second opinion. Later on, he was diagnosed with hemolytic anemia. Hemoglobin, for a normal adult male, is 14. His was four. His body was just eating up the red blood cells faster than he could produce them. That was January a year ago. He got a total of 21 blood transfusions. Many of them were direct donors. A lot of people loved him and just showed up and gave blood. He was in the hospital for 21 days until we could say he was stable, which meant a hemoglobin of seven or above for two days in a row. Every day I left the house before 6:00 a.m., so I could be at the hospital for morning rounds because you did not know which doctor was going to show up or when. I was always there when the nurses’ shift changed between 6:00 and 8:00 p.m. because I wanted to make sure the night nurse knew everything that was going on. My husband was the one who told me, “Never go to a doctor’s appointment alone because the patient can become emotionally clouded and not hear everything.” He wanted to make sure I heard what the doctor said, so he had someone else’s “take” on it. I’m a doctor’s daughter. I never heard such nonsense. But then again, I guess I always had my dad’s input without even realizing it. It never occurred to me that you should have someone in the doctor’s office with you when you’re emotionally not sure what you’re hearing. But that was what he wanted, so I was there to listen and ask a lot of questions. I’d put lavender on his pillows at the hospital because he liked that. We brought a lot of Dunkin’ Donuts and vegetable platters to the nurses. He was a big believer in bribing nurses.
What happened after he was hospitalized for 21 days?
He came home for about a week and a half. We had been watching The Man in the High Castle before he’d gone to the hospital the first time. We finally said, “Okay, you’ve been home a week and a half. Let’s watch it again.” So we put it on. And then, all of a sudden, he said to me, “Daph, I want you to call my brother and have him come pick up the kids. They are going to sleep over there. After that, you are going to call an ambulance.” I was like, “What?” He said, “Yes, that’s what you need to do.”
Did you know it was dire at that point?
You know that there is always a chance, and he was such a fighter being born at 26 weeks. My dad had a million things go wrong with his health, and he always came out okay. I was always hopeful. “Until proven otherwise” was my saying. He just kept fighting. He seemed okay. He seemed lucid. He made sense. He really approached his illness with a lot of thought and meaning. I say it was a real gift because the entire months of March and April he didn’t go into the hospital once. Jona was born in March and Rebeka was born in April. We always will have that. His birthday was April 30th, and he turned 50. He said he did not want a party with everybody. He just wanted the four of us, so of course that is what we did. It was a milestone moment. You need to have something to hope for always. The following Sunday we planned an open house. People came when they could because we had friends from Miami and London who were visiting. It was kind of an all-day thing. The real first hint that there was some sort of bigger problem came next. The kids decided at the last minute to make a video. We had everybody send us little clips of “Happy Birthday, Felix.” We showed it to him on his birthday. Then, at the party, we were showing it again to all these people. As he watched it, my daughter was next to him; he acted as though he had never seen it before. The next day, he was supposed to meet with one of his lawyers for business. When I dropped him off I told the attorney, “I don’t know what this meeting’s about, but he is not allowed to sign anything. He is not making a hundred percent sense.” I thought he was exhausted. The next day, I was supposed to meet the kids. He and I were sitting together and talking, and he just acted funny. I started going through the questions you would ask to determine if someone was having a stroke. “Honey, what year is it?” He said, “1967. Wait. No. 1976. Wait. No.” I asked him if he was joking with me? He couldn’t say 2017. I called his brother and asked him to come over because I was supposed to leave with the kids. I was trying to tell him we need to go to the hospital, and he refused to go. He was admitted later. When visiting hours were over, and it was time for me to go, I said, “You know, honey, I don’t feel comfortable leaving you. You just don’t seem a hundred percent yourself.” For the first time, he asked me to stay. I called the kids and told them they were going to sleep at their cousins, and I was going to stay. They moved us up to the private room and set me up with a cot. The nurse needed a urine sample, which he provided, and just as she started to leave, I asked him if he was in any pain. I said, “Do you need any pain meds?” And he just wasn’t there. He had a total stroke right then and there in front of me. It was really scary with the whole code blue, code gray, a million people in the room all at once. The next thing I knew, they were taking him for another scan. After that, they moved him to the neuro ICU. It turned out he was having these intermittent clots, and he was on every blood thinner possible. So, there was just nothing more that could be done. That was Wednesday. On Thursday, his English cousins arrived. They literally made the decision and showed up, and his sister flew from Israel. When she got there Friday morning, he was in and out.
Did you know how dire it was at that point?
At that point, it was very clear that there was not going to be a recovery. We moved him to hospice that night. It was weird. We were able to have Shabbat candles (electrical) that they provided. He actually said the entire Bracha, which was a beautiful thing because we had been doing Shabbat dinners since the kids were little. We had Saturday and Sunday at Hospice. But once he got there, I don’t really think he communicated much. I stayed the whole time. Everybody was there.
Did you have closure?
Other than missing him and regretting all the things that he will miss being a part of, there was nothing that we did not say to each other. We had a few sayings. One was, “I love you more every day.”
Are you okay?
I am okay. I miss him. I miss him every minute. He was one of those guys who was always fun to talk to. He just had a good take on things.
What life lesson have you learned that you would want to share with your children?
They have experienced so much pain already. I hope they learn to enjoy who they are and to be self-confident, to keep going regardless of the hard blows life throws at you every day. My dad would say, “Yihyeh beseder.” It will be okay. I don’t know. I never experienced as much death and dying as they have. It is so raw, people that they knew and loved, one after the other. I’m hoping there’s something positive they can take from it, something that will help them grow and not spiral down. Happiness is a choice. My father died six months after Felix. My dad and Felix both loved living. They were very passionate about how important it was to live life to the fullest. My dad’s motto was carpe diem. Felix fought to live. He did. He was not going down without a fight. So, I would say to them, live life to the fullest, and never give up.