The Deadly Cost of Childhood Cancer: The Numbers Will Kill You
If you think childhood cancer ends when a child dies, you’ve never met a grieving parent trying to pay rent with a funeral program in one hand and a stack of past-due bills in the other.
When my son Kingston was diagnosed with medulloblastoma, everything I knew about life shattered. His diagnosis was further complicated by posterior fossa syndrome, a brutal condition that left him unable to speak for six months. He didn’t walk again for nearly two years after surgery. He moved from a wheelchair, to a gait trainer, to a walker, to a few shaky steps—before eventually playing baseball on a typical team, because that’s the kind of kid he was.
Determined, relentless, full of quiet fire. He beat every odd the medical journals gave him, not because of what was offered, but because we fought for every inch of recovery.
Kingston touched lives around the world. He was only 9. He never had a real chance—but we do. We can make his life change lives. The diagnosis wasn’t just a threat to Kingston’s life—it dismantled mine too, piece by piece. Cancer entered swiftly and silently, like a storm that leaves devastation without warning. Overnight, I went from a mother with dreams and plans to someone the system quietly decided was expendable, economically irrelevant, a casualty of circumstance.
Leaving my job was not a choice. It was survival. Kingston needed me for every breath, every bite of food, every painstaking step forward. The severity of his condition after brain surgery meant round-the-clock care was non-negotiable. There was no room for hesitation or second guesses; love made the decision crystal clear. But the clarity of that decision came with no reassurance, no safety net, and certainly no pause button for life’s relentless demands. Bills didn’t care about pediatric cancer. They arrived faithfully, even as paychecks vanished.
I had entered a hidden world—a shadow reality known intimately by countless families yet largely ignored by society. The reality was stark and unforgiving. In the United States, approximately 15,780 children and adolescents (ages 0 to 19) are diagnosed with cancer annually, with about 1,590 succumbing to the disease each year. Cancer remains the leading cause of death by disease among children and adolescents in the U.S. Brain cancer specifically accounts for about 30% of all pediatric cancer deaths, making it the deadliest form of childhood cancer. Nearly 60% of children who survive cancer treatments suffer significant, lifelong disabilities as a result of their disease or its harsh treatments—disabilities that demand ongoing, intensive caregiving.
Up to 85% of families facing pediatric cancer experience significant disruptions to their employment. An alarming 35–45% of parents quit their jobs entirely due to the intensity of caregiving required and the unaffordable costs of professional home nurses. Mothers disproportionately bear this burden. Many of these parents never fully return to their previous careers unless their children die. The economic impacts are devastatingly permanent, with lost earnings averaging $35,000 per year per parent caregiver, significantly increasing family debt.
The financial toll is staggering. The average cost associated with childhood cancer treatment is estimated at $833,000, encompassing medical expenses, travel, and lost income. Approximately 37% of families report borrowing money to cover these costs, and 40% of families experience a loss of 40% or more of their annual household income due to treatment-related work disruptions. For families already struggling due to circumstances like the COVID-19 pandemic or divorce, this financial burden can be utterly crippling, pushing them to the brink of economic ruin.
During Kingston’s illness, I became an In-Home Supportive Services (IHSS) caregiver—receiving minimal compensation for performing duties equivalent to those of hospital-employed oncology nurses. Yet, unlike those professional caregivers, parents and family members providing IHSS care receive no substantial employee benefits. In California, IHSS caregivers earn roughly $15 to $17 an hour, barely above minimum wage, with no health insurance, retirement contributions, sick leave, or vacation pay. Non-family IHSS caregivers, however, are often eligible for these benefits, highlighting a stark inequity.
The Benefits Stop, But the Bills Don’t
When a child dies, everything halts—but not gently, and not fairly. If you’re an IHSS caregiver who is also the parent of the patient, you’re already denied unemployment when your child passes. You’re treated as though you were never really “working,” even though you did the job of a full-time nurse—without the benefits, the breaks, or the paycheck that nurses earn.
But it gets worse.
Social Security stops benefits the moment your child dies.
Even if that check would have helped cover cremation or burial costs, or bought time to breathe, it’s withdrawn without notice. There is no grace period. No warning. No final disbursement to ease the unimaginable. If the payment for that month has already posted, it is taken back, often without explanation—and certainly without compassion.
What you’re left with is grief and debt. A freezer full of meds. A bed that no one will sleep in again. And no income to even honor your child’s life properly.
This is what happens when the system refuses to see caregiving as real labor—unless you’re not related. Because then it’s a job.
But for parents?
It’s love. And love doesn’t qualify.
By comparison, the typical salary for an oncology nurse in California averages around $120,000 annually, often including comprehensive benefits such as health insurance, retirement plans, paid vacation, and sick leave. Despite performing identical, rigorous care tasks—managing medication, providing wound care, administering feeding tubes, and overseeing critical symptom monitoring—family caregivers are denied access to these essential employment benefits. This disparity amplifies the economic strain, deepens financial instability, and intensifies the emotional burden for caregivers already enduring unimaginable stress.
Children surviving brain tumors and Posterior Fossa Syndrome often require specialized therapies such as hippotherapy, Dynamic Movement Intervention (DMI), and neurosensory integration to regain basic functions. Unfortunately, insurance typically excludes these therapies, forcing families into further financial strain as they seek necessary care for their children. Additionally, mental health services, educational therapy, and family counseling—crucial for emotional recovery—are frequently not covered by insurance. Available support groups often lack adequate resources to provide meaningful assistance, exacerbating caregivers’ psychological burdens.
Despite the evident need, psychosocial support services for families dealing with childhood cancer are often inadequate:
Limited Access: Families report difficulties accessing mental health services tailored to their needs, with barriers including cost, availability, and lack of awareness.
Inadequate Sibling Support: Siblings’ psychosocial needs are frequently overlooked, leading to unaddressed emotional and behavioral issues.
Caregiver Strain: Caregivers often lack adequate support, resulting in increased risk for prolonged grief disorder and other mental health conditions.
When Kingston passed away, the devastation was total. But grief wasn’t the only legacy left behind. Debt lingered. Bills accumulated during those long, impossible years did not vanish with him. Instead, they multiplied, silently compounding my grief. On average, families who lose a child to cancer find themselves with tens or even hundreds of thousands of dollars in debt—money borrowed for medical treatments, travel, housing, and caregiving essentials that they couldn’t afford otherwise.
Now, as Brain Tumor Awareness Month approaches, another unimaginable blow looms on the horizon. Within the next two weeks, federal student loan involuntary collections are set to resume, precisely as May begins—as I begin another lap around the sun, a milestone that should represent hope and a fresh start. Instead, this timing feels calculated and deeply personal, as though Donald Trump himself has looked into my life, my struggles, my losses, and decided to compound my pain deliberately. In my mind, processing this imminent reality, he stands as the embodiment of cruelty itself, the literal devil glaring directly at me, sneering, telling me explicitly to give up—that he hates everything about me, Kingston, Zuma, and our fight. This isn’t policy; it’s personal cruelty masquerading as bureaucratic necessity.
The injustice is staggering. Only about 4% of the National Cancer Institute’s budget is allocated to pediatric cancer research, despite cancer being the leading cause of disease-related death in children. The underfunding hampers developing new treatments, causing many children to endure long-term health issues from harsh existing treatments. The same administration responsible for slashing pediatric cancer research budgets is now collecting debts from parents who sacrificed their entire economic futures to care for critically ill children.
Judgment placed on me and caregivers like me is deeply insulting, hurtful, and compounds our grief, often resulting in severe depression, anxiety, and other mental illnesses—conditions society conveniently ignores. Instead of receiving support, caregivers frequently face criticism and misunderstanding, labeled irresponsible for debts incurred out of love and necessity.
Systemic change is urgently needed. Families battling pediatric cancer shouldn’t face financial devastation as a side effect of keeping their children alive. Policies must recognize caregivers as essential, worthy of support and protection. Funding for pediatric cancer research must be robust, reliable, and immune to political whims. Financial assistance programs must be overhauled to ensure no family faces bankruptcy simply because their child is gravely ill.
As we observe Brain Cancer Awareness Month this May, let us bring awareness not just to the illness but to the broader societal impact of pediatric cancer. Let us shine a spotlight on the financial ruin silently endured by families and advocate for systemic reform—policies ensuring dignity and financial stability for families facing pediatric cancer.
Desperation Isn’t the Whole Story—Determination Is
I have ideas. I need direction. I need the light to come on and just one door to crack open. If you know how you can help change our trajectory—please, this is my plea for you to please reach out and help in any way you can.
💛 His Life Changes Lives: What I’ve Started, What I Still Need
Kingston didn’t just survive what no child should have to endure—he came back from it. He went from mute to laughing, from a wheelchair to a baseball field, from statistics to miracles. He lit up rooms. He inspired strangers. He changed people. And he was only nine.
He never got the chance to grow up.
But I’m asking you to help grow the things he left behind.
These aren’t ideas. They’re already happening. I just need the money and hands to keep them alive:
Projects I’ve Started That Need Support:
1. Live Like Kingston Foundation
Advocacy, support, and fundraising for families of children with brain tumors—specifically those battling posterior fossa syndrome. We’re working to cover therapies like DMI, hippotherapy, and sensory integration—treatments that got Kingston walking again and are never covered by insurance. Visit LiveLikeKingston.org and connect with me there if you are interested and able to assist with start up costs for this nonprofit initiative. I have a model and plan I am happy to share with serious inwuirers.
2. Books in Progress: Children’s + Memoir
Zuma’s Magical Balloon is finished and ready for broader release, but I’m working on a second edition with professionally illustrated pages (not AI-generated). I also have two new children’s books in development and am looking to partner with an illustrator for both.
In addition to the children’s titles, I’ve finished a deeply personal adult memoir—raw, emotional, and grounded in everything I’ve lived through. It’s ready, but I need an editor to help shape it into something that can reach and heal people like me. If you’re a literary agent, editor, or believer in the power of story—please reach out.
3. Kingston’s Memorial Library Project
I have city approval to install a Free Little Library in Kingston’s honor—a space for kids and families in our community to discover stories, swap books, and feel his magic in a place that bears his name. I want it to be bright, bold, and personal—with his face hand-painted on the side panels. I just need help covering the cost of materials, an artist who can bring his image to life, and the time to finish what should have been done months ago. This is more than a box of books. It’s a permanent way to say he was here—and he mattered.
4. Tribute Shirts for May: Gray in May + 1-Year Angelversary Line
I’m looking to partner with a shirt company to create and sell limited-edition tribute apparel for Brain Cancer Awareness Month and Kingston’s one-year angelversary at our shop on LiveLikeKingston.org. Proceeds will help cover urgent needs like rent and basic living costs until I’m back to work, and support the early development of the Live Like Kingston nonprofit—so we can begin helping other families facing similar diagnoses and financial strain.
5. 🎙️ The AfterWords Podcast
A podcast about grief, signs, spirituality, and rebuilding after life explodes. I need sponsors and support to keep producing new episodes and reaching more families like mine.
Don’t Stop Now Just Because He Isn’t Here.
My daughter asked me the other day, “Did everyone forget I’m still alive?”
Because that’s what it feels like—people vanish when the funeral ends, but we’re still here, still hurting, still trying to survive.
I’ve been called a mooch. A welfare leech. A burden.
But I am none of those things.
I’m a mother with a mission—and a stack of viable, powerful projects already in motion.
I have:
✔ A nonprofit plan ready to launch
✔ A media kit for podcast sponsorships
✔ A tribute shirt line that can fund therapy access
✔ A book ready for its second edition
✔ Two more children’s books seeking the right illustrator
✔ A voice, a vision, and relentless fire
What I don’t have (yet) is funding. Or partners. Or backing.
So here’s what I’m asking:
Donate if you can (here…)
Share if you care
Invest if you believe in impact
Email me at LiveLikeKingston@gmail.com or theafterwordspodcast@gmail.com if you want to work together
Ask me for my nonprofit and business plans—I’ll send them
Help fund what no grieving family should ever have to beg for
My birthday is May 18th.
My son is gone.
I’m in a new apartment with no memories, no income—but still showing up.
Because I have to believe that Kingston’s life still has the power to change lives.
And because I’m not giving up. Not now. Not ever.
Kingston never gave up. And if he were here, he’d tell me to believe in myself. He’d want me to be happy.
He’d remind me that I can do anything—because he did.
I wasn’t brought through the fire just to stand in rubble and hate life.
I’m meant to do something more.
And with your help, I will.
Thank you—for every share, every dollar, every message, every ounce of belief.
We’re just getting started.
