Fresh Air: Parenting a Child with Terminal Cancer Hosted by NPR's Terry Gross | Released on February 3, 2025

Introduction

In this emotionally poignant episode of Fresh Air, host Terry Gross engages in a deeply personal conversation with Sarah Wildman, a staff writer and editor for the Opinion section of The New York Times. Wildman shares her harrowing journey of parenting her daughter, Orly Wildman, who battled a rare and terminal form of liver cancer. Through her narrative, Wildman offers profound insights into the complexities of parenting a child facing mortality, the interplay between medical care and personal belief systems, and the enduring impact on her family.

Orly’s Battle with Cancer

Orly Wildman's struggle with hepatoblastoma, a rare liver cancer typically seen in toddlers, becomes the central focus of Wildman's stories. Orly was diagnosed at age 11 and underwent three years of intensive treatment, including chemotherapy, a liver transplant, two brain surgeries, and multiple procedures to address a spinal tumor that left her unable to walk. Despite the aggressive medical interventions, Orly succumbed to her illness at the age of 14 in 2023.

Wildman describes the state-of-the-art medical care Orly received but highlights a significant issue: the reluctance of some healthcare professionals to communicate openly about the grim prognosis. This lack of transparency left Sarah grappling with the reality of her daughter's impending death.

Interviewing Orly: A Unique Dialogue

One of the most touching segments of the episode features an interview Sarah conducted with Orly when she was 12 years old, shortly after her second round of chemotherapy. This interview, captured at [02:16], reveals Orly’s resilience and mature perspective despite her young age and severe illness.

Orly Wildman [00:02:16]:
"People just assume that I'm not confident with how I look, and I think that's just really strange because I'm really happy with being bald... I think I'm beautiful and not everybody has to agree."

This candid conversation showcases Orly's ability to maintain her self-esteem and humor in the face of adversity. Orly also speaks about the isolation that followed her initial diagnosis, noting how many people withdrew their support over time, leaving her feeling alone despite her outward strength.

Orly Wildman [00:04:28]:
"My world ended two years ago. It ended."

Orly’s stark realization paints a vivid picture of the profound and lasting impact that terminal illness can have on a young person’s perception of life and relationships.

Navigating Grief and Faith

Wildman delves into the intersection of grief, faith, and questioning in her family’s experience. She discusses how her daughters grappled with their relationship to God amidst the suffering inflicted by Orly's illness.

Sarah Wildman [00:09:32]:
"I thought of ourselves as relatively good people... what does it mean, you know, to face this question and have the whole world turned upside down."

Orly and her younger sister, Hannah, both expressed anger and confusion towards God, struggling to reconcile their faith with the loss they've endured. Wildman highlights the absence of structured mourning practices for losing a child within the Jewish tradition, which traditionally addresses the loss of a parent more comprehensively.

Hannah Wildman [00:32:42]:
"I was so angry with God, I was worried I'd be punished... I really do not know how to have any relationship with God right now."

This absence left Wildman and her family to navigate their grief largely on their own, redefining their spiritual beliefs and finding solace in the support systems they could create independently.

The Role of Hope and Medical Communication

A significant theme in Wildman's narrative is the delicate balance between maintaining hope and facing the stark reality of death. She criticizes the medical establishment's tendency to view the death of a child as a failure, leading to inadequate emotional support and communication.

Sarah Wildman [00:12:35]:
"Children's hospitals really are always advertising that they will cure children... they don't invest in psycho-emotional care for the end of life."

Wildman recounts how the term "incurable" was difficult to fully grasp, as it often felt like a repeated yet unspoken acknowledgment of inevitable death. She emphasizes the need for medical professionals to communicate more transparently and compassionately, providing families with clear and honest information while still offering hope where possible.

Balancing Work and Personal Life

Despite the immense personal turmoil, Wildman continued her role at The New York Times. She found that immersing herself in work provided a temporary respite from the constant stress of her daughter's illness.

Sarah Wildman [00:37:43]:
"Work was an enormous respite for one. I leaned heavily into editing a lot of the time during Orly's illness... it allowed me to focus away from the trauma of my immediate present."

This balance, however, was fraught with guilt and the constant challenge of feeling inadequate in both her professional and personal roles. Wildman's supportive work environment enabled her to manage these dual responsibilities, though the struggle to be present for her family remained ongoing.

Impact on Sibling and Family Dynamics

Orly's death deeply affected her younger sister, Hannah, who was only nine years old at the time. Wildman shares how Hannah's grief manifested in anger and confusion, particularly towards God, and how the family sought to address these feelings within their faith framework.

Sarah Wildman [00:32:42]:
"Hannah was very, very angry that God could have taken away someone as young, someone as vital, someone as important as Orly."

The absence of established mourning protocols for losing a child led Wildman to create their own path through grief, emphasizing the need for personal and community support beyond traditional religious practices.

Creating Joy Amidst Sorrow

Orly's vibrant personality and determination to live fully, even in the hospital, provided moments of joy that contrasted sharply with the surrounding sorrow. Wildman recounts instances where Orly brought positivity to her environment, such as organizing TikTok dances with nurses and pursuing her passion for acting despite her declining health.

Sarah Wildman [00:17:49]:
"She really tried to live each moment in such an enormous way. She really, really loved living... she wasn't able to do that as much as she would have liked outside of the hospital."

These moments highlight the importance of fostering joy and normalcy, even in the direst circumstances, as a means of coping and maintaining humanity.

Redefining Mourning Practices

Wildman's critique of traditional mourning practices in Judaism underscores a broader conversation about how society supports those who have lost a child. She argues for more inclusive and continuous recognition of parental grief, rather than limiting the mourning period to specific rituals and timelines.

Sarah Wildman [00:33:58]:
"If you lose a parent, you're not supposed to attend a wedding, to go to a concert... but if you lose a child, all the morning rituals end at 30 days. There's nothing beyond it."

By advocating for a more flexible and enduring approach to mourning the loss of a child, Wildman calls for societal changes that better accommodate the unique and lasting pain experienced by parents.

Conclusion

Sarah Wildman's heartfelt recounting of her daughter Orly's battle with terminal cancer offers a profound exploration of grief, resilience, and the quest for meaning in the face of unimaginable loss. Through her writing and candid discussions on Fresh Air, Wildman not only honors her daughter's memory but also sheds light on the broader challenges faced by families navigating terminal illness. Her narrative serves as a testament to the enduring strength of love and the human spirit amidst life's most difficult trials.

Notable Quotes:

• Orly Wildman [00:02:16]:
  "People just assume that I'm not confident with how I look... I think I'm beautiful and not everybody has to agree."

• Orly Wildman [00:04:28]:
  "My world ended two years ago. It ended."

• Sarah Wildman [00:09:32]:
  "What does it mean, you know, to face this question and have the whole world turned upside down."

• Sarah Wildman [00:12:35]:
  "Children's hospitals really are always advertising that they will cure children... they don't invest in psycho-emotional care for the end of life."

• Sarah Wildman [00:37:43]:
  "Work was an enormous respite for one... it allowed me to focus away from the trauma of my immediate present."

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