JOHN PAUL
September is Childhood Cancer Awareness Month.
It’s a month that brings attention to the kids and families whose lives have been changed by cancer, and the need for better treatments and more research.
This year I am very aware of all the advocacy needed for cancer research.
Because of John Paul.
I write this blog in my head every day. But theres just so much to say it feels like words don't do him justice.
John Paul Macri is an amazing little kid. I met him years ago when I used to substitute at his school, my daughter’s school and I was in his second grade class a lot.
So when I learned that John Paul had been diagnosed with cancer, the world stopped. I remember finding out right before a maternity session and then greeting my client with a blotchy face and tear stains.
John Paul has DIPG, an aggressive type of pediatric brain tumor.
Diffuse Intrinsic Pontine Glioma. It is a cancer that develops in the pons, a part of the brain stem that helps control some of the body’s most important functions, including movement, balance, swallowing, speech, breathing and heart rate. Because of where the tumor is located, it is difficult to treat and surgery to remove the tumor is impossible.
About 300 children in the United States are diagnosed with DIPG each year. It generally affects children between the ages of 4 and 10.
The symptoms can come on quickly and may include problems with balance or walking, vision changes, weakness, trouble speaking or swallowing, headaches, nausea or vomiting, and changes in facial movement.
There is currently no cure for DIPG and about half of children diagnosed pass away within a year. It is a devastating and cruel disease.
Those numbers are hard to read. Especially when you know one of those kids.
John Paul.
John Paul has cancer. That’s the reality his family is living with right now.
But when I’m with them, that’s not all I see.
John Paul is just such a light. He’s funny, he’s silly, and he has this way of making you laugh.
His brother is right there with him, and they act exactly like brothers do. They pick on each other. They fight. They make each other laugh.
They are normal.
And that’s one of my favorite things about photographing this family.
Their situation is anything but normal. They are going through something that no family should ever have to go through. But when they are together, they’re still just a family.
Our sessions are fun. We laugh. The kids mess around. Sometimes everyone cooperates and sometimes they do not.
I love that.
I don’t want these photographs to be only about cancer.
I want them to be about love. The way they love each other. The silly moments and the quiet moments and the completely ordinary stuff that makes a family a family.
I want them to be about John Paul. and his brother. his parents. his dog. his grandma. his stuffies. his room. his smile.
His Life.
John Paul is a kid with cancer, but he is also just a kid.
And he is a pretty amazing one.
He is small but mighty and truly changing the world in his own way.
If you've seen me anytime over the past year, you've seen my green bracelet. Team John Paul. All day, every day. Every time I look down, he reminds me to be thankful for every wrinkle on my face, to be kind to people I love and be patient with life's challenges. He helps me every day without even knowing it.
THIS SEPTEMBER
Childhood Cancer Awareness Month gives us a reason to stop and think about the families living through childhood cancer, and about how much more needs to be done.
DIPG is still incredibly difficult to treat. There is no curative standard treatment, and for families like John Paul’s, there are still far too few answers.
But I keep thinking about something Katie has talked about that gives me hope.
As recent as the 1970's childhood leukemia, particularly acute lymphoblastic leukemia , was almost always fatal. Today, more than 90% of children with ALL are alive five years after diagnosis, and many are cured.
DIPG could be the next one.
That is the hope.
DIPG is devastating right now. But right now doesn't have to mean forever. Researchers are learning more about these tumors, finding potential targets and testing new treatments and clinical trials. There is still so much to learn, but there is also work happening.
John Paul’s journey is part of a much bigger fight.
I am so grateful that I get to be a small part of his story.
WAYS TO HELP
If John Paul’s story touches your heart, there are a few ways you can help.
SUPPORT JOHN PAUL AND HIS FAMILY
There is currently a fundraiser supporting John Paul and his family as they continue navigating treatment, clinical options, travel and care.
FOLLOW JOHN PAUL'S JOURNEY
John Paul’s family has shared his journey through CaringBridge, where friends and family can follow along with their updates.
LEARN MORE ABOUT DIPG
Over the past ten years there has been so much more research on DIPG. There will be a cure one day .
me & one of my favorite kids ever
August 2026
