feel all the love in this incredibly special
Chesterfield Family Session
in the middle of a miracle
Some words change lives forever. For families facing DIPG—Diffuse Intrinsic Pontine Glioma—those words come like a storm, unexpected and devastating. DIPG is a rare and aggressive form of brain cancer that primarily affects children, often between the ages of 5 and 9. It develops in the brainstem, the area that controls the body’s most vital functions like breathing, heartbeat, and movement. Because of its delicate location, DIPG is inoperable, and treatments are heartbreakingly limited.
The prognosis is one of the hardest truths: the average survival time is just 9 to 12 months after diagnosis. But even in the midst of this unimaginable battle, there is courage, strength, and love that radiates from these children and their families.
John Paul Macri’s family recently learned of his diagnosis. He is a 3rd grader at my daughter’s school and I was heartbreakingly thrilled to photograph a session of their family. All of John Paul’s family on his mom’s side happened to be in town for the weekend so I’m glad we jumped at the chance to plan it quickly.
One Day at a Time: John Paul’s Fight Against DIPG
This week marked the beginning of John Paul’s fight against the tumor that has turned his family’s world upside down.
He started his first radiation treatment with the quiet strength and courage that’s become so typical of him. His mom, Katie, was allowed to go back into the treatment room and be by his side as he got settled on the machine. She watched as he laid down and the team gently strapped him in. There is a strap that goes across his chest, and then another piece of equipment that gets buckled in over his chest on top of that. Finally, they put on his specially requested camo face mask with openings for mouth and nose, and locked it into place to keep his head still.
It was a hard moment. Seeing her little boy on such a big machine, so still and brave, is something she’ll never forget.
And he did amazing. The team said he didn’t move a muscle for the full 10-minute treatment. Calm. Focused. Brave. When asked later if he ever gets scared, John Paul quietly said, “Yeah, sometimes. But I just tell myself I know it’s all going to be okay.” As his godmother said, he is filled with the Holy Spirit.
Earlier in the week, the family also began exploring the overwhelming world of clinical trials. They are discovering that are so many rules—some trials are only for newly diagnosed kids, others for those with tumor growth, and each has limited spots. The hard part is knowing that what’s available now may not be later after radiation when he’s ready for them.
Thankfully, the family has an incredible team helping them make these decisions. Every choice is made with John Paul’s health and happiness in mind. His parents are leaning on their faith and trusting that God will guide them to the right path at the right time.
Another DIPG mom shared a song with them this week—Middle of a Miracle by Emerson Day. One verse really stuck with Katie:
“You can’t see it but you’re right in the middle of a miracle. You can’t feel it, but under your feet new roots are taking hold. Don’t forget that with God all things are possible. Doesn’t matter if it’s broken or just ashes, there’s hope. You’re right in the middle of a miracle.”
That’s exactly where John Paul and his family are—right in the middle of something they can’t fully see yet, but holding on to hope. One day at a time.
If you would like to follow John Paul’s journey you can subscribe to his family’s Caring Bridge Posts.
Raising awareness for DIPG is so important. It means pushing for more research, better treatment options, and a future where families don’t have to face this diagnosis alone.
A GoFundMe was created to support the Macri family as they face the many expenses that come with this difficult journey—such as travel, lodging, and medical care. Every contribution, no matter the amount, is deeply appreciated as they walk through this challenging season together.
To learn more, support research, or honor a child with DIPG, visit Chad Tough Defeat DIPG Foundation
Every child deserves a future. Every family deserves hope.
#teamJohnPaul
“I believe we can do for DIPG what has already been done for leukemia. Once the survival rate for leukemia was zero; today it's 85%. With enough funding, we can do the same for DIPG.”
- Associate Professor David Ziegler, Group Leader, Brain Tumors.
