Chaya’s Story: Fighting Harder, Hope for the Future
This profile is brought to The Layers Project Magazine through a partnership with Matan, in honor of their 30th-year anniversary dinner Chol Hamoaid Sukkot 2019, in Jerusalem.
(1/7) “I Should Have Known”
“Matan was founded thirty years ago by a group of incredible women who learned Torah together, sitting with my mother around a dining room table. For most of my life, I have been surrounded by these strong, resilient, learned women. I watched as they celebrated smachot together and grieved their losses together; shared Torah and inspired each other. I saw them band together in times of illness and pain. They shared all this love and faith with me, and I am honored to be counted among their students, staff, and family.
So when life became a challenge for me, their example led me to believe that I could make it through the pain.
I think that I am always in survival mode. Life made me that way. It was natural for me to function in survival mode. I survived growing up with four brothers, living in the Rova, having 100 post-high school boys walking in and out of my house, every day of my life.
Sometimes I wonder if my personality has been affected by my name, “Chaya.” Instinct, animal, Life. I never liked my name, but now I appreciate its influence on me.
A few summers ago, the whole family was in a sleepaway camp in America. We were having a nice time, I was going outside of my comfort zone and putting myself out there.
My daughter Miki came to me one day and told me that she was feeling some pain. I thought it was growing pains in her leg. The pain was not so bad. By the time we got back to Israel, it had gotten worse, and I was giving her the pain relief meds like the doctor prescribed. She had gone to gymnastics twice a week, she did dance. I thought maybe it was all the stretching and movement. We thought it might be the new shoes we had just bought her.
I should have thought that it was more.
I went to the doctor again and I told him, ‘Listen the pain isn’t going away. We need to go to an orthopedist and we need to find out what this is.’ They sent us to Beitar Illit; there were great doctors and short lines for what we needed.
The second doctor looked at the results of the x-ray, and said, ‘Maybe you should get an MRI.’
He didn’t say anything else. I should have known then.
The night we went for the MRI, it was two or three o’clock in the morning because that was the time slot we were given. We were called to the doctor’s office shortly after.
He told us, ‘Your daughter has Ewing’s Sarcoma.’
At the time, she was only ten years old.”
(2/7) “Looking For Help”
“They say that when Bnei Yisrael were leaving Egypt, everyone was quickly leaving. Almost in a haphazard manner. Shooting in all directions. That’s how it was with us too. Within twenty-four hours of getting the results from the MRI, she was already at the hospital getting a biopsy.
It was January 2018 and we had no idea what we were getting into. We had no idea how rare Ewing’s Sarcoma is and that we would need specialty care.
But in those first days, we had to be the ones to tell our own daughter that she had cancer. We went away for a weekend with the family in Herzliya. We spent a nice Shabbat together. At one point we took her aside privately and told her that she was sick.
She began to cry. She did not want to be sick. She did not want to lose her hair. She was ten years old, it is so hard to be able to understand what this diagnosis meant for her.
For me, Miki’s diagnosis was shocking. But my survival cape came out and I started flying.
The medical system was so hard to navigate. I would go to get her a blood test at seven am, and we wouldn’t get home until five pm. I would have to fight for a bed for her, every time we came in for chemo. The treatment was so far – we live in Jerusalem and the hospital was near Tel Aviv – and there was always so much traffic there and back.
Sometimes if there were no beds in the ward, we would have to go back home and wait for another day.
I know I still have PTSD from those moments of fighting – not just for my daughter’s life but also to get her the care she so desperately needed.
Just this morning I heard that someone who was being treated alongside my daughter passed away. I immediately broke out into tears. It still feels so raw and so real to me. The need to fight is still so alive within me.
I remember the second night we were in the hospital, we were placed in the same room as a fifteen-year-old boy. He looked so ill. I turned to my husband and said, ‘Yaakov, this boy is dying.’ In the middle of the night, his alarms started ringing and they rushed him to the ICU. That night I aged. My youth, my motherhood, my grief; all of it felt broken.
After that first week of chemo, it was another two and a half-hour drive home. All my daughter wanted to do was to shower the hospital off of her. We discovered that she had fainted from the heat of the shower. We were screaming, terrified. She was so weak after chemo. No one prepared us for how this was going to be.
We had a family wedding at one point in those first few weeks. There was a question of whether or not she should be getting chemo that day. One of the people working in the hospital said to us, ‘What are you worried about? She doesn’t have a ‘racing disease.’ She’ll be fine if she gets chemo just tomorrow.’ I think I lost it in that moment. Can you imagine someone saying that to the parent of a child with cancer?
We spent five months doing chemo in Israel. The chemo they gave her was so strong that she was in the hospital for a week, home for four days, then right back to the hospital for another week because of her compromised immune system. We did this treatment from January to May.
We needed surgery to take out the tumor. But the procedure was so rare, that surgery had never really been done like this in Israel.
We were given advice that we should switch to get specific treatment in America. We were shooting in every direction, trying to rid our kid of this cancer in her body.
So we left Israel, looking for help.”
“First we went to Highland Park, New Jersey which was the closest neighborhood to a radiation center where my daughter would receive a kind of radiation that was not available in Israel, and close to other hospitals where she would receive chemo. An amazing family loaned us their home for the summer, so we were able to stay local to her treatments.
It was May, and my husband and I went to get Miki settled in for treatment in America. My brother moved into our home with his kids for a few weeks to be with my children while we were gone. I came back to Israel for Shavuot and then my husband switched with me. There was a lot of going back and forth for everyone so we could juggle the needs of all our children.
After we left Highland Park, we were given an apartment in New York City, by a family we had never met before. The levels of chesed we experienced were unbelievable. We lived there for six months. We never met them. They gave it to us just out of the goodness of their hearts.
The plan was that we were going to continue treatment at Sloan Kettering. I call it, “The Beit Hamikdash of Cancer Treatment.” Treatment there was just so accessible and the care is excellent. We had confidence that she would do well with their plan of action.
Her body was given a bit of time to rest after chemo and radiation, to prepare her for the surgery. Then, the day of the operation was July 17, 2018.
It was a 17-hour surgery.
We were in the waiting room, and you couldn’t eat there and couldn’t make any noise. But the room was full of people waiting for news of Miki. So we moved near the gift shop because we made the waiting room too full and too loud.
I had written on Facebook that people should pray for us. My father, Rav Bina, sent a message to his yeshiva, Netiv Aryeh, to pray for her. My mother Malke Bina, sent a message to all the women at Matan – מתן, to pray for her.
Everyone showed up. My parents and my in-laws came in. Our siblings, friends, random people connected to my parents, cousins. It felt like a million people. For my husband, it was harder, but I was used to being around tons of people growing up. Our home had been like the central bus station of the Old City. I remember the night before my wedding, someone came into the house after eleven at night looking for some time with my parents. I felt like I always shared everything.
For me, knowing that everyone was there made it better emotionally.
There are two Tehillim groups dedicated to davening for ‘Miriam Bat Chaya.’ That day they were on full alert and going strong. We felt like we had an army of people whose tefillot would reach Hashem with our pleas.”
“The doctors were very pleased with the outcome of the surgery. Thank God, it had been a success.
She was in a full-body cast for six weeks. She left the hospital after 10 days. All our kids were with us in America. We were juggling being parents to the rest of our kids, and helping Miki recover.
After surgery, even while in a body cast, Miki continued chemo. It was torture to see her like that. We were all in survival mode, we did whatever we could to help her function. It was so hard. Simple tasks became almost insurmountable. But we did what we had to do.
I was in the moment. I just couldn’t stop thinking about how I could make her more comfortable. I was just trying to keep her alive. I was feeding her every few hours. Trying to remember to feed myself. I was very focused on the practical details of ‘what needed to get done.’
During this time our siblings and their families came in to visit. It was a wonderful distraction for us all. They would come to visit and spend time with us. They were really there for us. They brought in good energy and made us feel like things were going to be OK. Being with friends, family, and cousins made such a big difference for us.
In November time she still had a few more rounds of chemo to go, but she was strong enough that we could come home to Israel to visit. It was great for her to see her classmates again. All her friends from the neighborhood.
We went back to New York and did more rounds of chemo. My kids went to school in the city. My oldest stayed behind in Jerusalem and went to school there. We were finished with all the treatments in January 2019.
She was still in a wheelchair even this past Pesach. Then she went from a wheelchair to a walker, to a crutch, and finally to no crutches. It was a long process. She did fourteen rounds of chemo altogether.”
(5/7) “On Hold”
“I spent all my time with Miki. We were in chemo. We sat for hours in the hospital. I was always there for every test and every treatment. I was always asking the nurses and doctors what they were doing, what they were giving her.
The only thing in my mind was getting her better. My life was singularly focused on that goal. I was keeping busy to keep afloat. My life was put on hold.
My work was put on hold. I am the Director of Development at Matan – מתן and I was busy working on a gala dinner when my life came to a crashing halt. I had to stop all the work I was doing.
It was harder for me to keep in touch with my friends. When it was the darkest moments and she was really immunocompromised, we could accept no visitors.
When I spoke to people on the phone, often they would say the wrong things. They didn’t mean to be hurtful, but that’s usually how it was. I always automatically forgave them. I could move on from those painful moments. People just really don’t know how to talk to the parent of a child with cancer.
How can one really know what to say?
I don’t see it the fact that Miki got cancer as a ‘bracha.’ People have said that to me. One person literally told me that this cancer was a ‘gift.’ don’t tell me it’s a gift, I thought. It’s a cloud that will hang over me and my family, forever.”
(6/7) “You Got This”
“At the end of our stay in America, they told us that Miki’s scans were clean. I decided that we were going to come back every three months for scans. So we do.
Since January 2019, she has had no cancer in her body. Bli Ayin Hara.
Now that we are ‘graduates’ of chemo, radiation, and surgery; I get calls at least twice a week from other families who have children with cancer. They need practical and emotional support. Being there for them is something that I need to do and want to do. It has become a ‘tafkid’ of my life.
Still, I have scanxiety. It’s something I carry with me. I am nervous that the other shoe will drop and we will have to start all over again.
Sometimes I post something online, and it will get four hundred likes. But no one will call me. I wish people would text or call. It’s not over for me. People don’t know what to do with our situation. It feels hard for them to relate to our struggles, or to know how to be there for us.
I have a lot of friends, but not a lot of, ‘Chevirot Nefesh’- soul friends. I grew up like that. I am a bit of a workaholic and family-holic.
I have one friend who kept telling me, ‘You got it.’ I needed to hear those three words. Tell all your friends who are struggling, that they got it. At first, I was thinking, ‘What does she mean I got this? My kid is in a full-body cast and getting chemo, her hair falling out, losing weight. I have no control of this.’ She kept sending me the message. After a while, I realized what she meant. Not that I had control over this situation, but that I had the strength to get through whatever was being thrown at me. Eventually, I got it.
Just show up for the people who need you. We had one person in our life who used to show up at the hospital room in New York and leave ice cream at the door. We wouldn’t even see him because he didn’t want to disturb us. But we knew he was there. We knew he was thinking about us and bolstering us with his thoughts and his energy. Just a token of connection, energy, and affection. Made us feel like we weren’t alone in this.
It’s nice when people think of you.
Right now I am trying to come back to myself. I am trying to eat food that is good and nourishing for me. Spending time exercising. Reading a good book. I am listening to Brené Brown. Considering what I would find fun, and thinking about doing it. I am becoming aware of the fact that I am missing that part of my life.
Doing this interview is putting myself in the arena. Extending myself to others. Opening up my vulnerabilities. I am in the process of acceptance. Of letting go. I have anger, but I find that it doesn’t help.
I am finding a window for new things.
I want to leave the miracle year that we had; with horror, sorrow, and pain. And move on to the rest of our lives.
Now I am struggling to turn off the feeling of being in survival mode. Right now I am trying to get back to living.
What is left of that year are many new friendships. Tremendous hakarat hatov, gratitude to my family, to Am Yisrael, to Hashem. There were people from all over the world, of all religions that prayed for my daughter. The prayers for her were non-denominational.
There is a song that says, “Anashim Tovim Biemtza Haderech”– there are good people in the middle of the journey. From the doorman of the apartment we were given who smiled at me and shared a comforting conversation every morning, to the nurses at the hospital who became our friends. Being kind and grateful, and receiving kindness and chesed.
They were rooting for us.
My daughter is now doing handstands and cartwheels. She danced in a recital. This summer it has been a year since her big surgery.
Bli Ayin Hara.
I take none of it for granted.”
(7/7) “Family and Future”
“Being busy and focused is good for me right now.
I find that my work empowering female Torah scholars at Matan – מתן gives me just the right refocus. My work at Matan feels so important to me.
I am happy, proud, and humbled to be working in this movement that promotes women’s education and scholarship. As a mother of three daughters, we talk about this all the time. We work to make sure that female speakers are available, we support our graduates, we help these brilliant women find jobs and communities to share their Torah.
It is foundational work for the future of our communities.
Some of the women who are students here, have known me since I was ten. They were at my bat mitzvah, my wedding; they are like family to me. They are like my grandmothers, aunts, sisters, cousins, and daughters. There are women here of all ages. Some are 10-12 in our bat-mitzvah learning series, some bring their babies to class, and some women are here who are over 90 years old.
Going through lifecycle events together becomes so natural because we are family. We have celebrated so many smachot together. Weddings, births, bar and bat mitzvahs, successes both personal and professional.
We also had many tough years of tragedy. National terrorism losses, that affected our students and their families. We felt it so personally. These are women we see every day, who were losing children, parents, grandchildren, to terrorism. There has been illness and suffering.
But I see all their resilience. They inspire me to fight harder, to keep strong, and to have hope for the future. They continue with life and learning. They lead by example.
So will I.”