DIPG: A family struggles

FAMILY PHOTO - Shaun Freeman Jr. and his parents, Shaun and Misty Freeman, are ready to fight and bring awareness to DIPG, a rare and incurable cancer. Pictured with an eye patch, Shaun Jr. wears it because Misty explained the brain tumor he has causes double vision, and his right eye turns inward.

A recent fundraiser helped raise money for a family struggling with a rare form of cancer: DIPG.

Shaun Freeman Jr., an incoming Northview High School freshman in the fall, was diagnosed at Riley Hospital with a rare form of cancer in March of this year that currently has no cure.

Shaun is like so many kids; He enjoys playing baseball, riding ATVs/UTVs, going to car shows, video gaming, camping, and being with his friends and family.

IVY JACOBS PHOTO - Using 300 pounds of fish, stopping at around 6:40 p.m. because the sides were running out, receiving many silent auction items, and raising nearly $10,000 on Friday, May 20, 2022: Organizers Erica and Kameko Bennett believe “it takes a village to raise children.” With one needing help, they felt the village would show up. “And boy did they,” said Kameko. “Our community is always ready to rally together for one of our own.”

“I don’t even know where to start,” when Misty, Shaun’s mother, was asked to describe her son.

Shaun Freeman is Shaun Jr’s father.

The family went home to figure out the next step.

IVY JACOBS PHOTO - Nearly $10,000 was raised during a fish fry fundraiser on Friday, May 20, 2022: Organizers Erica and Kameko Bennett believe “it takes a village to raise children.” With one needing help, they felt the village would show up. “And boy did they,” said Kameko. “Our community is always ready to rally together for one of our own.”

However, this summer, the Freeman family is traveling back and forth from Columbus, Ohio, because Shaun Jr. is enrolled in an experimental Clinical Drug Trial.

“It’s called BXQ-350,” explained Misty. “It’s the only place we can get treatment at this time.”

The Freeman family has been told “to go home and enjoy what time is left,” but they are determined to fight this disease. That’s when Misty started looking for groups on Facebook about DIPG and sent out emails to the Cincinnati Children’s Hospital, St. Jude, and Nationwide Children’s Hospital for more answers.

Family Photo - A fundraiser in Shaun Freeman Jr’s honor has been set up at The Cure Starts Now Foundation. If you would like to donate to The Cure Starts Now Foundation. One hundred percent of these donations, after credit card processing fees, go directly towards research to find the homerun cure for cancer starting with pediatric brain cancer research. If you would like to make a donation by mail please send a check to: The Cure Starts Now Foundation; 10280 Chester Road; Cincinnati, OH 45215, and put the child’s name in the memo. The family receives a notification of all donations made to this tribute fund automatically.

“St Jude called us back, and so did Nationwide,” said Misty, who says they all have been great with Shaun and his treatments.“We want to raise awareness about this type of cancer. Everyone is doing great at supporting cancer and children’s hospitals, but this is so rare, there’s not much research or treatments out there.”

What is DIPG?

DIPG is a form of brain tumor found in the pons area at the base of the brain. DIPG stands for diffuse intrinsic pontine glioma, or:

Submitted - MRIs can detect DIPG. However, treatment options for DIPG are very limited. The tumors can’t be surgically removed because the cells are all intermixed with the normal cells in the brainstem that are crucial for functions like breathing.

Diffuse - meaning the tumor is not well-contained – it grows out into other tissue so that cancer cells mix with healthy cells.

Intrinsic - means “in,” referring to the point of origin.

Pontine - indicates that the tumor is found in a part of the brainstem called the pons, which is responsible for several important bodily functions, like breathing, sleeping, bladder control, and balance.

Glioma - a general term for tumors originating from glial cells found throughout the brain. These cells make up the brain’s white matter that surrounds and supports the neurons, cells that carry messages in the brain.

DIPG cancer primarily affects children - it’s very rare in adults - with most diagnoses occurring between 5 and 10. It makes up 10-15% of all brain tumors in children, with about 150-300 new diagnoses per year in the United States.

Signs of DIPG include:

odd eye movements

slurred speech

difficulty swallowing

trouble maintaining balance

or drooping of one part of a child’s face

Unfortunately, treatment options for DIPG are very limited.

The tumors can’t be surgically removed because the cells are all intermixed with the normal cells in the brainstem that are crucial for functions like breathing.

Radiation shrinks these tumors, but cannot make it go away permanently.

Chemotherapies for DIPG, so far, have not been successful yet.

First diagnosed in 1926, DIPG diagnosis appears to have increased over the years.

DIPG is an inoperable and incurable brain cancer considered to be terminal upon diagnosis.

Limited research funding has been provided to those diagnosed today, meaning today’s children have no more chance of survival than those diagnosed fifty years ago.

That is why Freeman’s Fight is vital, not just for Shaun’s fight but also for all the families affected by DIPG.

The Freeman family is prepared to fight cancer and raise awareness.

“I encourage you to Google DIPG, for there is no cure today,” Misty said while preparing to talk to the doctors about Shaun Jr’s condition at the hospital in Ohio. “We appreciate your support.”

Misty Freeman has a Facebook page to follow Shaun Jr’s treatment, and a Go Fund Me Page - Freeman’s fight against DIPG is also available to learn more about DIPG.

A fundraiser in Shaun Freeman Jr’s honor has been set up at The Cure Starts Now Foundation.

If you would like to donate to The Cure Starts Now Foundation. One hundred percent of these donations, after credit card processing fees, goes directly towards research to find the homerun cure for cancer starting with pediatric brain cancer research.

If you would like to make a donation by mail please send a check to: The Cure Starts Now Foundation; 10280 Chester Road; Cincinnati, OH 45215, and put the child’s name in the memo.

The family receives a notification of all donations made to this tribute fund automatically.