It was 2017, and I received the most majestic stuffed animal of all time – a 48-inch tall giraffe whose big brown eyes made me feel like my war was over after being wheeled out of Cohen’s Children’s Medical Center in Queens, New York.
I was 14 and had just gotten a pneumonectomy of my right lung a week earlier. Unfortunately for me, taking out my entire right lung was the only way to remove the carcinoid tumor that had been growing there. The doctors had no clue how I was still walking, let alone doing my missed algebra assignments in my hospital bed, as my right lung collapsed entirely and obstructed my airways.
While at Cohen’s, I had my eye on that giraffe since I entered the hospital doors. I never really named him, but I felt more comforted by his presence when I went to the hospital lobby. To this day, he still resides in my childhood home living room, where I see him every time I’m home for the holidays.
At 22, there are 10 or so stuffed animals scattered across my bed and nightstands. Just like that ginormous giraffe plush helped me at 14, when I find myself waking up in the middle of the night drenched in sweat because the large U-shaped scar on my back is pulsing profusely and won’t stop no matter how many painkillers I take, the only thing that calms me down is holding my stuffed animals. I wish I could tell 14-year-old me that war never really ends for a childhood cancer patient.
Now that the cat is out of the bag: Yes, I had childhood cancer, and still do, although now I guess it’s just called cancer. I’ll save you all the nitty-gritty details of my story, but to summarize, I was diagnosed with carcinoid cancer at the age of 14, which was localized in my lung. I then went through two major surgeries, flatlined during one of my bronchoscopies, relapsed at the age of 15, and have since then been battling what my oncologist likes to call a parasite because cancer is very slow-growing so with the help of daily chemotherapy pills and monthly injections I function as normally as everyone else but get a jaw-dropping reaction every once in a while when I drop the “I have cancer” line on people.
Enough about me and my missing lung. What I want to discuss is how, according to the American Psychological Association, childhood cancer survivors are inevitably doomed as it was found that we are left with a higher risk of anxiety, stress, post-traumatic stress disorder (PTSD), depression, and, well, you get the gist.
Now thats 15,780 estimated children a year who are diagnosed with childhood cancer within the U.S. and 300,000 children globally. Each and everyone of those children are faced with an increased risk for mental health disorders.
Dr. Tiina Isokääntä and Dr. Satu Mäkelä, who both specialize in pediatric medical trauma, say that children have to be taught resilience by healthcare providers such as therapists as emotional healing can’t be left to luck when what’s at stake is psychiatric disorders, depressive symptoms, and disruptive behavior.
This story isn’t meant to be a sob story because, trust me, that is the last thing a childhood cancer patient or survivor wants. What we want is to see real growth in mental health resources for childhood cancer patients before and after treatment.
Three survivors joined me to share stories of their childhood cancer experience and how their mental health declined. Their experiences and resilience brought tears to my eyes. You might want to grab some tissues.
Lili Ignon was diagnosed with stage 2B Hodgkin‘s lymphoma at age 13.
“I had noticed a lump above my collarbone, and I kind of ignored it for a couple of months. Then I told my mom about it, and she said we should go see a doctor just in case. My primary care physician told me it was nothing to worry about, but my mom did not believe him — mama’s intuition. We went to a different doctor who did some X-rays, and then they pulled us into a little dark room with my dad on the phone and said it might be cancer,” Ignon said.
After her diagnosis, Ignon underwent ABVD chemotherapy in her hometown at San Francisco Children’s Hospital.
When she first heard the news, she kept a straight face.
“I immediately, you know, had a straight face, no reaction whatsoever. But then, I escaped to the bathroom and broke down crying. But the second I went out of that room, I never shed another tear. I never allowed myself to show any kind of emotion, especially in front of my parents. I didn’t want them to see that. So I basically blocked out everything when I was in treatment,” she said.
Ignon used the blocking of emotions as a defense mechanism. Although she wasn’t allowing herself to feel emotionally for the sake of her family, she had internal struggles while going through treatment — the biggest one having to do with the loss of her hair.
“I was clinging to my hair for dear life,” she said. “That was my one connection to normalcy.”
For Ignon, her thinning hair symbolized a grasp on life before cancer—a small but defiant act of holding on when everything else felt out of her control.
While going through treatment, Ignon was in eighth grade, and kids would tease her for being absent all the time as she chose to keep her diagnosis private. She struggled with wanting to tell her bullies to stop the teasing but chose to ignore it — until she was in remission at the beginning of her freshman year of high school. When she confronted “this one kid Colin” to let him know that she had cancer, her bully’s face turned white. Ignon got her justice.
During her remission in high school, her guidance counselor gave her a laminated pass that she could wave to the teacher to get out of class. Although any high schooler would see a get-out-of-class free pass as a dream, Ignon used it to escape to the bathroom — where she’d have panic attacks.
“After my first time, when I finished treatment, that’s when I started experiencing PTSD, and that was in the form of panic attacks. Anytime anyone mentioned the word cancer or anything related, I would have a panic attack,” she said. “It gradually got better, but for that first year after, I think I had a panic attack like maybe three times a week.”
Remember how I said war is never really over for a childhood cancer patient? In April of Ignon’s senior year of high school, she was diagnosed again after another lump appeared.
“The day they told me it came back, I remember it was the same thing. I just went to the bathroom, cried, came out, nothing more. The second time it came around, you know, I was 18, so that’s also when I was just a little bit more aware of my life and everything going on,” Ignon said.
That’s because things were now more complicated for Ignon. She was about to take off to do a gap year in Europe before attending USC. Precautions had to be taken to preserve her fertility — something 13-year-olds rarely think about, but becomes a pressing reality for older teen patients.
Ignon’s trip to Europe was delayed, and she received chemotherapy treatment the second time around at Los Angeles Children’s Hospital before going to New York with her mom for radiation therapy to kill any remaining cancer cells and reduce the risk of another recurrence.
After the second time around, when Ignon was considered “cured,” she started dealing with a larger amount of mental health problems.
“This is when I first started really dealing with depression, and I had a little stint with an eating disorder where I would binge eat but also exercise all day,” she said.
As she struggled with depression, Ignon was entering her first year of college at USC. But she always felt a sense of guilt when letting loose by going out with friends to drink or smoke. Although that was normal for everyone else her age, she was always faced with an overwhelming sense of shame. She knew she shouldn’t be doing that — but she just wanted to feel normal.
“There’s then another aspect of anxiety of what if the cancer comes back? I would feel so disappointed in myself because I would feel like it’s my fault since I let myself go and had fun these past few years,” she said.
For many childhood cancer survivors like Ignon, the anxiety of constantly wondering if the cancer will return never really goes away. And no matter how many times you hear otherwise, you can’t help but wonder if it was somehow your fault. Even if it’s not true, that thought lingers in the back of every survivor’s mind.
The depression and anxiety almost feel built-in after remission, yet there are no built-in resources to help survivors cope with the aftermath of having had childhood cancer.
Many survivors feel that a therapist should be integrated into treatment from the start.
Michael Albrecht was diagnosed with stage 3 Ewing sarcoma when he was 14 years old. He never learned the cause, but jokes that he got cancer from square dancing.
“I got hit in the leg during square dancing, and I had this big bump. Over time, I thought, ‘Oh, when is this going away?’” Albrecht said.
As the bump began to grow and move, Albrecht’s family visited multiple doctors, who eventually handed them two pieces of paper: one suggesting Ewing sarcoma, the other osteosarcoma.
“My whole world was upended,” he said.
He was ultimately diagnosed and began treatment at Seattle Children’s Hospital, undergoing chemotherapy and a bone graft in his left tibia. He was considered cancer-free until about three years later, when he relapsed in 2019 during his senior year of high school.
During his first round of treatment, Albrecht said there was so much support from his parents and community that he didn’t fully grasp what was happening. But when the cancer returned and he was older, he became more anxious — not just about treatment, but about missing out on life milestones.
“Just going through puberty makes one have all these imbalanced feelings that need to be talked about. So combining that with chemotherapy, not going to school, and seeing your peers like a normal student created a lot of FOMO [fear of missing out] in senior year because I was missing graduation and prom. It wasn’t so much about the cancer as it was about how I was really missing out on life,” he said.
For a lot of childhood cancer patients, including myself, this is true. When you’re a kid and going through treatment, it almost becomes normalized because you haven’t yet experienced any memorable young adult milestones. However, when cancer comes back in high school, college, or early adulthood, patients often become more anxious — not just about the illness, but about falling behind in life.
After receiving treatment in 2019 and being considered “cured,” Albrecht relapsed a third time in 2021. Instead of chemotherapy, he underwent an autologous stem cell transplant, where healthy cells were taken from his blood and bone marrow and used to replace the damaged and diseased marrow.
“My third time going through treatment, I definitely thought I was going to die,” he said. “It was COVID at the time, and I started flunking online school because I thought I was dying, so I didn’t even think it mattered.”
Albrecht wasn’t worried about losing his hair or getting poked with an IV (Intravenous therapy) anymore. Now, he was worried about his longevity — starting a family, building a career, and having a future. At the time, Albrecht turned to his social worker to act as a therapist, since none was formally provided. He confided in her about what he was going through, helping to calm his nerves and guide him through yet another relapse.
“It was like hell. It was the most sick I’ve ever been,” he said.
Albrecht has now relapsed for the fourth time and is currently going through treatment.
“I think a therapist should be assigned to you and used as a part of your treatment, as opposed to something you have to ask for,” he said. “When I was first diagnosed at 14, I didn’t know a therapist could help me navigate feelings of depression and dying — yet I was still expected to ask for one, even though it wasn’t offered.”
Albrecht’s story highlights a growing call among survivors: that mental health care should not be an optional resource, but a standard part of pediatric cancer treatment.
Childhood cancer has recently been in the news and not for the right reasons.
Congress has several pending measures aimed at improving care and outcomes for young cancer patients — including the Accelerating Kids’ Access to Care Act, the Creating Hope Reauthorization Act, the Innovation in Pediatric Drugs Act, the Give Kids a Chance Act and the RARE Act — but none have moved forward in a deeply polarized Washington.
At the same time, House Republicans have advanced a budget resolution that could result in up to $880 billion in Medicaid cuts over the next decade. Advocates warn that such reductions would severely impact children battling cancer, many of whom rely on Medicaid for essential treatments.
But while little is happening politically, parents like Megan Miller are moving full speed ahead.
Miller and her family live in Charlotte, North Carolina. Her son, Luke, was diagnosed with stage 3 T-Cell lymphoblastic lymphoma when he was just three years old. His treatment lasted about two and a half years — a routine that included transfusions, immunotherapy, and chemotherapy — before he was declared in remission. Luke is now six.
“I kind of had this feeling that he’s just finished his fight. I think it’s our turn to fight for it and use his story to raise awareness,” Miller said.
Miller now advocates for childhood cancer legislation on the national level, frequently traveling to Washington, D.C., to speak with lawmakers about what families like hers actually need, starting with access to care.
She and other advocates joined the Alliance for Childhood Cancer to push for legislative change, focusing their efforts on persuading lawmakers from North Carolina to co-sponsor the Accelerating Kids’ Access to Care Act — a bill aimed at streamlining access to out-of-state medical specialists for children with complex conditions.
For Miller, access to care isn’t just about geography — it’s about peace of mind. It’s knowing your child will get the treatment they need without facing financial, logistical or medical uncertainty. When those basic guarantees are stripped away, the emotional toll is devastating.
“With all the Medicaid funding cuts that are happening right now, we are making sure that pediatric parents are still getting their Medicaid benefits,” she said. “Because without those benefits, they cannot afford to have their child treated for cancer, so they are then taking that, and, you know, it’s a matter of life or death.”
That kind of pressure doesn’t just weigh on a family’s wallet — it fractures their sense of safety. Miller recalls a moment during Luke’s treatment when they were told the hospital had run out of one of his chemotherapy drugs.
“I was like, what do you mean, you’re out of it?” she said. “Usually we’d get a prescription of like six pills. And I remember one time they gave us half a pill to get us through the next couple of days.”
Medical trauma in children, especially when care is delayed or disrupted, can lead to long-standing psychological effects, the doctors Mäkelä and Isokääntä explain, especially for families already under high stress.
Even though Luke’s treatment plan could handle a short delay, Miller couldn’t stop thinking about families who couldn’t afford to wait and the anxiety that comes with knowing a missing dose could mean something far worse.
And while Miller’s legislative focus is on securing physical treatment access, she also believes mental health support needs to become part of the standard.
“I think the first stitch is, you wish you could take it on for them like you do with anything with your child. You wish it was you instead of them,” she said. “But I also was very understanding that I don’t think I could have handled it as well as he did. Children are very resilient.”
Her role, she explained, was to give Luke the sense of emotional safety that everything would be okay, even when it wasn’t. “For me, it was supporting him through all his different emotional ups and downs. Making sure he was comfortable, that he felt safe, that he felt trust.”To help other families process the emotional toll of childhood cancer, Miller wrote a children’s book, “Luke and the Lost Bell.“
“In the book I create an illustration of a storyline that reflects a cancer journey as a train ride,” she said.
By making more things such as visual books to tell kids what they are going through can help them feel less scared and comfortable with the process, easing some stress off their minds.
For Miller, advocacy isn’t a post-treatment project but a continuation of the same fight. Only now, the goal isn’t to heal one child, but to push a system that too often forgets who it’s supposed to be protecting: the kids.
Although I’d say I categorize myself as someone who isn’t anxious or depressed I found that when writing this story I couldn’t get more than a few sentences out at a time before breaking down in tears.
My heart hurts for myself and others alike who have to deal with the constant war going on in our heads. Questioning our every move and how to live with it all?
When compiling old photos of myself I realized I never really had time to process what I’ve been through. I always pushed it to the side because I didn’t want to think about it. I’d rather make a cancer joke and play it off like I don’t lie awake at night thinking what the hell did I do to deserve this. But I do. And every childhood cancer patient or survivor does.
Our researchers and doctors have figured out how to keep more kids alive but now it’s time to figure out how to help them live. Because the truth is, there is no bell loud enough, not a hospital discharge date final enough, to end a childhood cancer patient’s journey. It will follow us as we grow up and grow old until we can receive the mental health support to process it all.