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Supporting Joshua’s Fight

Jusmin Witten knew something was very wrong near the end of last summer when her normally sweet, loving 9-year-old son Joshua started exhibiting severe anger outbursts. Once the school year began, he became increasingly agitated and started to go to bed much earlier than usual. Joshua is autistic, and doctors attributed his behavior to some medication he was taking at the time for ADHD. Based on the doctor’s recommendation, the family decided to start Joshua on applied behavior analysis therapy.

But as the school year progressed, Joshua began exhibiting increasingly odd behaviors. In February, he began to experience bouts of headaches and nausea on top of his extreme fatigue. He tried to explain by saying, “It feels like my stomach is in my brain.” Doctors continued to experiment with different types of ADHD medicine, but still Joshua’s symptoms worsened.

Then, on February 24, the Whitten family’s lives were changed forever.

At school, Joshua told the nurse he didn’t feel good but couldn’t really say why. Towards the end of the day, he bumped his head into a pole out of frustration. When Jusmin arrived to pick him up, she was immediately frightened. He had trouble answering questions, and his eyes were dazed. The school worried he may have unintentionally eaten some kind of plant outside that caused a bizarre reaction.

Jusmin immediately took Joshua to Palomar Hospital near their home in Escondido, California, thinking maybe he had hit his header harder on the pole than the school thought. Once they arrived, Joshua began to vomit, and the doctor ordered a blood and urine analysis, convinced Joshua had ingested some kind of drug. Jusmin knew better, and when his results came back clean, she insisted on a CT scan, fearing Joshua had a concussion.

But nothing could have prepared her for what came next. The CT scan revealed that Joshua had hydrocephalus (an abnormal buildup of fluid deep in the cavity of his brain) that was caused by a tumor. He was immediately taken to Rady Children’s Hospital for further tests.

As Joshua was taken to the hospital in San Diego by ambulance, Jusmin drove home in shock to collect an overnight back and comfort items for her oldest son.

“I was so lost, scared, and unsure of what the future would hold,” said Jusmin. “I just cried, hugged my husband, Jesse, and called close family members to let them know the little bit of information I had.”

When she arrived back at the hospital, the doctor explained that the 2cm tumor in Joshua’s brain was blocking his 4th ventricle. The initial plan was to start an IV and steroid to try to get some of the extra fluid off his brain. But at this point, it had been hours since Joshua had eaten or even sipped water, so every poke resulted in a blown vein. It was after 9pm, 8 hours since they left school, when the IV was finally in place, and Joshua could eat and go to sleep, preparing for a morning full of further testing.

The next morning, after a difficult night’s sleep, Joshua awoke in a wonderful mood, exhibiting his usual happy, sweet self.

In a video Jusmin posted on Facebook that morning, Joshua exclaimed, “I love you guys, and I’m going to be ok!”.

Because Joshua’s tumor was intertwined with the nerves around his eyes, his medical team feared doing a biopsy to learn more about the tumor. But by March 28, Joshua’s tumor had grown. That morning, Chief Neurosurgeon Dr. Michael Levy performed a bilateral craniotomy for an infratentorial brain tumor and was able to remove 10% of the tumor for biopsy.

Two days later was the hardest day of Jusmin’s life. As she and Jesse sat down with Joshua’s medical team, everything she heard seemed a blur. They informed her that Joshua had an aggressive DMG tumor, and that Joshua had less than a year to live.

“Jesse and I couldn’t stop crying,” said Jusmin. “Then we went to see Joshua, doing our best to be strong and not shed a tear in front of him.”

Through an internet search, the Whitten family discovered My DIPG Navigator, a program created by the ChadTough Defeat DIPG Foundation to help guide families through their journey with DIPG. Jasmin connected with nurse navigator Ashley Rogers, who helped her discover appropriate next steps for Joshua.

Joshua began 30 sessions of proton radiation therapy on April 11, and through every difficult day, Jusmin remained grateful and full of hope. Then they had to wait until June 29 for an MRI to learn what to expect next.

While the Whitten family tried to enjoy each precious day, Jusmin couldn’t help but fear what the future might hold.

“Some days, I don’t know how I am holding it together and am really emotional. When things slow down, it hits you harder. I try to just soak in every moment I can and realize just how precious life is,” said Jusmin.

In August, Joshua started fourth grade while simultaneously qualifying for the PNOC 022 clinical trial at San Diego Rady Children’s Hospital. The combination therapy trial involves daily doses of the oral drug Paxalisib and weekly doses of the oral drug ONC201.

Joshua is currently doing very well with few side effects, enjoying school and spending time with his little brother, Joel, playing LEGOs and Minecraft. He loves to be creative and make his family laugh.

“While I don’t know what the future will bring, it’s so good right now to see Joshua back to his old self, and we will be grateful for each day,” said Jusmin.