I want to tell you about a woman who walked into our hospital room on day one of my son's diagnosis. Her name is on the badge I can still picture. She is a child life specialist. She is one of the most important people I have ever met.

If you are a cancer parent, you have a person like her in your story. If you are not a cancer parent and you have never heard of a child life specialist, this post is for you.

What a child life specialist is

A child life specialist is a credentialed professional, usually with a bachelor's or master's degree and specific clinical training, whose entire job is to support children and families through medical experiences. They are not nurses. They are not doctors. They are not therapists, though they often work closely with mental health teams.

What they are, in practice, is the person on the pediatric oncology team whose job is to keep your child's developmental, emotional, and psychological world intact through the experience of cancer treatment.

They do this through play.

What our child life specialist did, on day one

We had been at Advocate Children's Hospital in Park Ridge for less than 24 hours. My son had been diagnosed with leukemia the day before. We were in a room I will not describe because the memory is too sharp. We were learning, in real time, what acute lymphoblastic leukemia was, what a port was, what an induction protocol was, what the next three years of our life were going to look like.

Our child life specialist knocked on the open door. She had a name badge and a soft voice and she asked if she could come in.

She knelt down. She made eye contact with my son, not with me, and she handed him a small yellow toy. A Cocomelon school bus.

He took it.

He had not taken anything from anyone in about six hours. He took the bus.

I wrote about that yellow bus in another post. The shorter version is that the bus was the first thing in our family's cancer story that came from a place of softness instead of medical urgency. She walked it into the room.

What our child life specialist did, over the next four years

She prepared him for procedures

Before his first port access. Before his first lumbar puncture. Before his first lumbar with sedation. Before his bone marrow biopsies. She walked him through what was going to happen using teaching dolls, models, books, and her own gentle voice.

She is the reason my son has, at five years old, a vocabulary for the medical things that have happened to him. "They are going to put a small needle in my port. It will pinch for one second. Then they will count to three."

She held him during the hard moments

When the procedure was happening, she was the one with the bubble wand. The kaleidoscope. The pop-it. The song. The small song that distracts a child while a needle goes in.

I cannot tell you how many times my son squeezed her hand during a port access. She held him for moments I could not.

She worked with our daughter

When we brought our daughter to clinic, our child life specialist made time for her too. A small craft. A toy from the sibling shelf. A two-minute conversation that left our daughter feeling like she belonged in the room.

She brought the cart

She brought a cart of toys to the infusion floor on long inpatient stays. She knew which kid was on which medication. She knew which toys to bring. She knew when to come and when to leave us alone.

She named things we did not have names for

When my son was struggling with a specific kind of anxiety before procedures, she named it. When he was acting out in the playroom after a hard week, she explained the regression. When he asked her, at age four, if he was going to die, she answered him with grace, and then she found me in the hallway and walked me through what to say next.

She held our family

When my husband and I were running on no sleep and the marriage was straining, she noticed. She did not make it weird. She just brought us a coffee one morning and said she was thinking of us.

When we had bad news, she found us in the parking lot before we left.

When we had good news, she celebrated with us in a small specific way that meant the world.

What I have learned about the field

Child life specialists, as a profession, are some of the most under-resourced and under-recognized members of pediatric medical teams. Many pediatric oncology programs run with one or two child life specialists serving an entire clinic. Many smaller programs have no child life specialist at all.

The work they do is not optional. It is essential. Children who receive child life support during procedures have better outcomes, less psychological distress, and stronger long-term coping skills.

If you are reading this and you have ever donated to a hospital, donated to a pediatric cancer organization, or wondered where the highest-leverage support goes, child life programs are an underrated answer.

What Maxwell's Toy Box has learned from child life specialists

Nearly everything we know about toys in pediatric cancer treatment, we learned from child life specialists. The framework of calm play, distraction play, and recovery play. The criteria for clinic-friendly toys. The age-by-age guidance. The understanding that toys are not extras, they are clinical tools.

When we build Joy Packages, we are translating what child life specialists do into a kit that can be handed to a child at the start of an infusion day. The Joy Package is, in many ways, a child life specialist's cart in bag form.

A thank-you to our child life specialist

I will not name her here. She knows who she is. She has been one of the most consistent and tender presences in our family's life for four years.

She is the person who handed my son the yellow bus on day one. She is the person who held his hand through countless port accesses. She is the person who brought my daughter a small craft. She is the person who, when treatment ended, told me through tears that she was so proud of our family.

Thank you. We will love you for the rest of our lives.

A thank-you to every child life specialist reading this

If you are a child life specialist reading this, please know that you are seen. The cancer families you have worked with remember you. The cancer parents you have walked through hard moments with remember you. The kids you have prepared for procedures, distracted through hard minutes, and welcomed back to the playroom after long stays, all remember you.

Thank you for the work you do.

Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛

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