A Heart That Works

1. A child's cancer diagnosis shatters a family's world

I felt like I had suddenly quadrupled in weight, and an oily, black whirlpool began to swirl where my heart had been.

Devastating news. The diagnosis of a child's brain tumor is a life-altering moment that shakes a family to its core. For Rob Delaney and his wife Leah, their son Henry's diagnosis at just 11 months old turned their world upside down. The initial shock and disbelief quickly gave way to a new reality filled with hospital stays, medical procedures, and overwhelming fear.

Emotional turmoil. Parents face a whirlwind of emotions, including:

• Guilt and self-blame
• Anger and frustration
• Profound sadness and grief
• Anxiety about the future

Family dynamics. The diagnosis affects the entire family unit, including siblings and extended family members. Roles shift as parents become caregivers, and normal routines are disrupted. The focus on the sick child can inadvertently lead to feelings of neglect in siblings, requiring extra attention and care to maintain family balance.

2. The grueling journey of pediatric cancer treatment

If you're going to get leukemia in America, my advice is to wait until you're elderly and have served in the military.

Medical complexities. Pediatric cancer treatment is an arduous process involving multiple surgeries, chemotherapy, and constant monitoring. For Henry, this included:

• A 13-hour brain surgery to remove the tumor
• Installation of a tracheostomy tube for breathing
• Intensive care unit stays and frequent hospital admissions
• Chemotherapy and its devastating side effects

Physical toll. The treatment process leaves children physically changed and vulnerable. Henry lost his ability to swallow, required a feeding tube, and experienced partial facial paralysis. Parents must quickly become experts in complex medical care, learning to manage feeding tubes, tracheostomies, and medication regimens.

Emotional challenges. The treatment journey is emotionally taxing for both the child and the family. Parents must navigate difficult decisions, balance care for their sick child with the needs of siblings, and cope with the constant fear of losing their child. The medical system itself can be overwhelming, requiring advocacy and persistence to ensure the best care for their child.

3. Adapting to life with a disabled child

Henry loved to hold the book and flip through it, genuinely enjoying it more than Goodnight, Moon or any other kids' books whose illustrations you'd think he'd prefer.

New normal. Families must adapt to a drastically different way of life when caring for a disabled child. For the Delaneys, this meant:

• Converting Henry's bedroom into a specialized hospital room
• Learning complex medical procedures and equipment operation
• Coordinating with healthcare providers, social services, and caregivers
• Balancing Henry's needs with those of his siblings and parents' work obligations

Finding joy. Despite the challenges, families often discover unexpected moments of happiness and connection. Henry's personality shone through his disabilities, bringing joy to his family and caregivers. His love for music, play, and interaction with his brothers demonstrated the resilience of the human spirit.

Support systems. The importance of a strong support network becomes evident. Charities like Rainbow Trust and Noah's Ark provided crucial assistance, offering respite care, play therapy, and emotional support. Extended family, friends, and healthcare professionals all play vital roles in helping families navigate this difficult journey.

4. The power of communication and connection

Henry was AGOG. He was confused at first, like anyone would be if one of the coolest people in existence essentially walked out of the television, but kids adapt fast, so he soon achieved equilibrium and seemed to think, "Yeah, this tracks; she must have wanted to meet me. Exciting women dig me."

Overcoming barriers. When Henry lost his ability to speak due to his tracheostomy, the family turned to Makaton, a language program using symbols, signs, and speech. This adaptation allowed Henry to communicate effectively, maintaining his connection with family and caregivers.

Importance of play. Despite his medical challenges, Henry thrived on play and interaction. Key elements included:

• Music therapy sessions
• Visits from therapy animals
• Engaging with his favorite TV personalities, like Singing Hands
• Physical therapy disguised as play

Family bonding. The experience brought the family closer together in many ways. Henry's older brothers, Eugene and Oscar, learned to assist with his care, demonstrating love and maturity beyond their years. The family found new ways to connect and create memories, even within the constraints of Henry's medical needs.

5. Dealing with the return of cancer and end-of-life decisions

We just didn't want to torture him anymore. We'd seen the effects of what opening a kid's head from the back and scraping around his brain stem did.

Heartbreaking choice. When Henry's cancer returned, his parents faced the agonizing decision to forgo further treatment. This decision was based on:

• The slim chances of success with additional surgery and radiation
• The immense suffering further treatment would cause
• The desire to prioritize Henry's quality of life in his remaining time

Emotional turmoil. The decision to stop treatment brings a complex mix of emotions, including relief, guilt, and profound sadness. Parents must navigate their own feelings while also supporting their child and other family members through this difficult time.

Making memories. With the knowledge that time is limited, families often focus on creating meaningful experiences and memories. For the Delaneys, this included:

• Frequent trips to the park and zoo
• Special visits from Henry's favorite performers
• Quality time with extended family
• Celebrating holidays with extra significance

6. The profound impact of losing a child

I dream about Henry often. I dream he's alive, and in those dreams it's not as though he was never sick. He's the Henry that might have survived, some possible future where he still needed help with a few things.

Unimaginable loss. The death of a child is a uniquely devastating experience that fundamentally alters a parent's world. The grief is all-encompassing, affecting every aspect of life and changing one's perspective forever.

Ripple effects. The impact of losing a child extends far beyond the immediate family:

• Siblings struggle with their own grief and changed family dynamics
• Extended family and friends grapple with how to support the bereaved parents
• The loss can strain marriages and other relationships

Ongoing grief. Grief doesn't follow a linear path or timeline. Parents may experience:

• Intense emotions that resurface unexpectedly
• Difficulty with milestones and holidays
• A sense of isolation from those who haven't experienced similar loss
• Changes in their worldview and priorities

7. Finding meaning and resilience in the aftermath of loss

Henry's death and physical absence cause me great and enduring pain, but I do—I do—feel his presence and effect on the world when families with sick and/or disabled kids get a smile out of something Henry taught me.

Honoring memory. Many bereaved parents find ways to keep their child's memory alive and create meaning from their loss. For Rob Delaney, this includes:

• Sharing Henry's story through writing and public speaking
• Advocating for and supporting organizations that help families with sick children
• Using his platform to raise awareness about pediatric cancer and disability issues

Personal growth. While the pain of loss never disappears, many find unexpected strength and growth through their grief journey. This can manifest as:

• Increased empathy and compassion for others
• A shift in life priorities and values
• Deeper appreciation for life and relationships

Continuing bonds. Parents often find comfort in maintaining a connection with their deceased child. This might involve:

• Talking about the child and sharing memories
• Incorporating the child's memory into family traditions
• Using the child's life and legacy as inspiration for positive actions

Last updated: January 22, 2025