The call of parenting is to be bigger, stronger, kinder and wiser than your child. That can feel like be a lot when you are sleep-deprived, struggling to balance work and family life, recalibrating your partnership, wishing you had more “me time” and experiencing everyday worries about your child’s well-being. Add a diagnosis of neuroblastoma to the picture and the myth of who you think you are might shatter along with all your plans for the next year or two.
In that opening, you might discover you have more resources than you ever dared to imagine, but because you must, you not only imagine but live into that imagination to give your child the best possible chance to survive an aggressive form of cancer while experiencing the joys of early childhood.
When Tori Kuper heard her son’s neuroblastoma diagnosis, she knew the parenting bar just got raised. Life as they knew it would be forever changed. After the shock wore off, instead of fighting reality, she accepted it and got going fighting cancer with modern medicine and other miracles. Tori set to work creating magic, humor and a celebration of resilience that not only impacted her child’s recovery but touched the hearts of medical professionals and other community members. It’s called the Jonah effect.
This is the story of Jonah’s journey into the land of medical treatments and excruciating pain alongside simple pleasures, all while living months at a time in a hospital. It is about the wellspring of mother love that Jonah drinks from so he can not only survive the cancer experience but despite it, know joy, empowerment and health.
How you might ask? I talked to Tori to find out.
Judith: I knew you as a powerful and capable activist and business woman before you had a child, before you had a child with a cancer diagnosis. Describe your general sense of how life works before Jonah’s diagnosis.
Tori: Many of us spend our lives waiting for the other shoe to drop. Convincing ourselves that if we aspire to live a perfect life, we can keep that other shoe in the air. We live with a level of pretense, decorum, and a ‘keeping up with the Jones’ approach to our curated Instagram feeds, but always fearing one false move.
Then for us, the other shoe dropped. Hard.
And the pressure was off.
Judith:Then what?
Tori: When the worst thing that will probably ever happen has happened, it creates a lot of space in our lives. It creates space for humor. For time together. For us to be ourselves. For “enoughness”. Our family experiences space from other people’s expectations. Space from the unachievable standards of being some career-mom all-star who “really can have it all.” We can’t control a damn thing and we don’t have to pretend like we can anymore. We’ve finally been given permission to just survive. And allow that to be enough. And yeah, surviving is harder for us that for most families, most days. And in other ways, so many of us are just surviving, just scraping by, but feel like we have to hide it under a veneer of success and keeping it all together.
That veneer is one of the things that shattered for us. And the transparency, honesty and authenticity that we’ve been allowed to expand into has been liberating. People have responded to it with an outpouring of support, love and validation. It’s been truly incredible and absolutely necessary for us to get through this.
It’s allowed us to rearrange our priorities in life. I used to be very focused on external success. I used to think self-sacrifice was a virtue and lived in a series of burnout cycles. I put work ahead of health and home, and valued success and other people’s opinions more than my own relationship to myself.
We certainly don’t take our health for granted anymore. My upmost priority is maintaining a strong relationship with myself, my family, and my community, and cultivating each with the time and attention they deserve. If we take care of our bodies and minds, and live in right relationship, the rest falls into place, falls away, or comes in time.
I have also learned radical acceptance and chose to find ways to love what IS rather than feel resentment about what I object to about my reality. The grieving process of a “normal life” is real, but there’s also the opportunity to create normalcy, joy, routine and play in our current conditions, as well.
Judith: That’s amazing! How did you create normalcy, curating Jonah’s experience of doctors, treatments and hospitals, to hold onto what you value and want him to have in an early childhood experience?
Tori: From the very beginning, I wanted to maintain as much normalcy and connection to home as possible through treatment without compromising Jonah’s quality of care. I knew it was going to be a marathon, and that we needed our home, our routines, and our community to fuel us through.
Jonah got a very unlucky diagnosis at a very lucky time. Neuroblastoma is rare enough that many people have to travel to major centers like New York City or Boston for quality treatment. We are very lucky that one of the most renowned neuroblastoma experts, Dr. Clare Twist, is from Buffalo and after decades working at Stanford in California and Dana Farber in Boston, she chose to back and practice at Roswell.
Early on in treatment there was a moment during a visit with her that I thought “Dr. Twist is the most important person in my life.” Obviously, Jonah is the most important person in my life, but she is responsible for saving his life, so her role is most critical. It’s an odd experience to have to decide to trust someone at that level. Especially a perfect stranger. We are glad we did.
She talked us through the details of treatment. This was not your average cancer. It was aggressive and dangerous and fast-growing. She informed us that we’d be going to war for the next 18 months. That we throw everything modern medicine had at it. The full kitchen sink.
Henry (Jonah’s dad) and I decided to enter Jonah into a clinical trial that would aim to dramatically increase his chance for survival. Reading the details of treatment – from side effects to risks – was absolutely terrifying. But the alternative was scarier. As part of the trial we traveled to Dana Farber Cancer Center in Boston for MIBG Therapy. Let’s just say they used some really toxic radioactive sludge to try to kill the disease that has spread through his marrow.
After many rounds of chemotherapy and MIBG, we learned that his tumor had shrunk but was still involved in some really critical parts of is body. A complete resection would require more skill and experience that Buffalo had to offer. There was a lot at risk. We were connected to Dr. Gerstle who was recently named the head of pediatric surgery at Sloan Kettering Cancer Center in NYC, and an absolutely lovely human being. Conveniently, he specialized in tumor ressections just like Jonah’s. We stayed at Sloan for two weeks, and surgery was a complete success, with minimal side effects.
In both places, Dana Farber and Sloan, we were grateful to take advantage of what Buffalo couldn’t offer, but so grateful to return home for the remainder of treatment. Cancer is a long game. To maintain stamina, we needed the support and security that only came with being home.
Judith: I’ve seen photos of Jonah’s hospital room. It’s beautiful. How did you do it on a practical level?
Tori: Oishei Children’s Hospital is one of the most beautiful, calm, and spacious hospitals we have stayed at (we’ve stayed at a lot this year), and the staff is incredible. That said, living at a hospital sucks. You have no privacy, little control, and it’s as far from cozy as you can get.
When we checked in for Jonah’s first bone marrow transplant, I channeled my nervous energy into aggressively nesting. We figured out every life-hack for making the hospital as homelike as possible. Being part of The Rose Garden community taught me the importance of environment in a child’s life. Surrounding a child in soft colors, natural materials, calming imagery, and peaceful lighting helps them feel grounded and calm. Replicating that environment made our hospital room feel familiar and calming. The Rose Garden teachers made us rainbow stars and fairies that we hung everywhere. We built an altar full of Jonah’s treasures and magical items. We brought a salt lamp and twinkle lights, rugs, quilts and tapestries. Henry designed a huge paper tree that “grew” and filled much of the room.
We made it feel like home. It was peacefully welcoming, and also deeply assertive. Our room communicated to Jonah that we will build our home wherever he his. Our room reminded doctors and nurses that they were guests in our home. Doctors who would barge in with loud voices at early hours began to tip toe in with quiet whispers and take off their shoes at the door. We made our identity as a family loud and clear. We drew our lines in the sand. We claimed our turf.
It was imperative for me that the doctors who were treating Jonah knew the whole Jonah and didn’t just see him as a list of lab results that needed to be tweaked and calibrated. When residents and attendings rounded on us every morning, we invited them to our altar. Jonah would take time to show them each of his treasures and explain to them their importance and what kind of powers they had. He would play songs on harmonica, cast spells, and take pride in sharing his world with adults. This ritual was essential.
Not only did it reinforce a sense of power and autonomy for Jonah during one of the most powerless experiences of his life, it forced the doctors to ascribe to our patterns and values, and not just default to culture and routines that western medicine and hospital protocol demanded of us. I also truly believe that the more the staff knows Jonah and cares about him, the better the treatment he would receive. This is one of the reasons, we have chosen to pursue most of his treatment at home and not relocate to larger cancer center.
The reality is that we do have some version of a home away from home at Oishei. We are familiar, if not close, with all of the doctors and the nurses on the Oncology floor. We have formed new routines, patterns and habits. We’ve developed new schedules. We’ve built consistency in the chaos. More than anything, that’s what any child needs: connection and consistency. That’s our priority wherever this journey takes us.
Judith: Bravo to you! You obviously are using not only your heart but your best thinking as well to make the seemingly impossible possible. How do you stay positive in the face of ongoing challenge?
Tori: My family has been through some sad stuff. My grandparents are Holocaust survivors. My dad emigrated here as a refugee. There’s a Jewish saying, “If you don’t laugh, you die.” That’s been my guiding principle. There’s so much humor in the tragedy.
Imagine Jonah during his second bone marrow transplant. It’s been two weeks. He hasn’t eaten, he’s not drinking water, he’s on IV morphine around the clock and has like ten tubes coming out of his body. He’s barely even speaking. It’s like the worst thing you can imagine, right? And then the nurse comes in to give him a shot, and I have to restrain him while he’s screaming and it’s pretty much the saddest thing in the world. But for us, it’s just Tuesday. And at the end of it all, the nurse gives him a band-aid and leaves. He opens it. It has a red car on it. Jonah’s looks at me with shock and disbelief and says, “Mom, I wanted a truck band-aid.”
I told him what my midwife told me when I wanted an epidural. “If you want it that bad, you better put on your pants, get out there, and find some nurse to give it to you.” And he did. This doped up toddler who has not responded to me for days, puts on his pants and his Koala bathrobe and looks at me and says “Momma, unplug my IV pole. We’re getting that truck band-aid.” And away we go, claiming what’s rightfully ours. His tenacity achieving a major milestone for his recovery. And suddenly, what is a tragic tale becomes another hilarious story of an arbitrarily stubborn toddler.
Judith: That’s an amazing skill, to find perspective by telling the story with humor. What have you learned about life, mothering, and Jonah through this experience?
Tori: When Jonah was born, I was awestruck by how pure he was. He was so present. Alert. Aware. He had an openness in his spirit that I had never experienced in another person. In those first days, I knew that he was complete. And that as his mother, my job was not to shape him, but to preserve the innate beauty and goodness he arrived with. I knew I could not protect him from the world. I could not shield him from suffering or hurt. The only thing I felt I could do was to teach him resilience.
Children are born resilient. It is Jonah who teaches me resilience. And we feed each other what we need to fill our reserve.
Mothering Jonah is no easy feat. He is powerful, strong, smart, and willful. I self-admittedly lose every power struggle I naively enter. Managing cancer is demanding and the stakes are high. Everything else aside, getting a 3-year-old to eat or drink is hard enough. Adding 10 oral meds a day, the pressure of charting intake, and a treatment regimen that turns their stomach, changes their taste buds and kills their appetite (if not worse) makes it sometimes feel impossible. We’ve had to get exceptionally creative just to get through the day. It has forced me to invoke the support of mischievous tricksters, deceptive gnomes, secret traveling toy closets, benevolent fairies and a myriad of otherworldly creatures and tales to traverse the landscape of treatment and remain on the same team. In the telling of the tales, they weave into our reality, and begin to take on as much “realness” as what we see and touch.
I’m inspired by the work of Adrienne Maree Brown, writer of science fiction and facilitator of Black Liberation. She talks a lot about the need for radical imagination. That on a very practical level, the world we live in right now is the product of some else’s imagination, and if we want to live in a different world, we must challenge ourselves to truly liberate our imaginations.
Children have the most extraordinary imagination. It makes them hardwired for survival and resilience. Jonah feeds us with his imagination. I remember the first time he was on contact restriction. The doctors and nurses had put on yellow gowns, masks, and gloves to come in the room. He looked at one of them and said, “You are a beautiful butterfly!” I used that as a prompt to take my rose-colored glasses to the next level and use imagination to spin every experience and situation into something that could be a vehicle for beauty and hope.
It’s possible that Jonah was born with this disease, and I believe he was born with the power he needs to defeat it (with a pile of help from modern medicine). I never knew how strong I was until Jonah was born. Jonah’s birth was my warrior story, my hero’s journey. It taught me what I was capable of. It taught me what I needed to know to be his mother.
Judith: Tori, thank you for sharing your story reminding us what’s truly important and what is possible. Although the stakes are currently very high for Jonah, let’s face it, the stakes are always high. We are always communicating to our children that now is the time to be our best selves. It is what parents are called to do, to be worthy of imitation, to dig deep and aim high, to reveal our humanity whatever the circumstances might be.
Thank you for modelling it so beautifully. One last thing, or maybe two…
How is Jonah doing?
Tori: Jonah was diagnosed in July of 2018 and we expect his treatment plan to last until January of 2020. If all goes smoothly, we will only have to go back for scans every few months to make sure he stays in remission.
Overall, Jonah is doing great. His best friend Margot was over this morning. They rode their scooters outside and played and played and played! Jonah always bounces back quickly. You wouldn’t guess that we were in the hospital less than a week ago.
Judith: What do you plan to do for Mother’s day?
Tori: We are going to have a quiet family brunch at home with both sides of the family over. We are using the day to celebrate mothers, grandmothers, aunties and all of the loving maternal figures in Jonah’s life.
Best wishes for a happy Mother’s day!
