Family fights to fulfill dying boy's wish to go home

PHILADELPHIA (WPVI) -- A young boy's dying wish is to leave the hospital and go home. But his family is facing resistance setting up hospice care.

Meanwhile, tens of thousands of people have been following his journey on Facebook.

The boy is at the Children's Hospital of Philadelphia, and the family says his care there has been excellent. But he wants to go home.

And this is a heartbreaking example of a gap in medical care when it comes to some of our most vulnerable patients.

10-year-old Julian Ross is described as a kind and loving boy.

His mother, Kristi Thompson, says, "He's very much a nature boy, an animal lover, a military enthusiast."

He's also a fighter.

He's been battling stage four neuroblastoma - a cancer that starts in the nerve cells - since he was 6-years-old.

The family lives in upstate New York, but came to the Children's Hospital of Philadelphia for his care.

"Ultimately they saved Julian's life three times," Kristi said.

But this year, his health took a turn for the worst.

His mother explains, "His cancer just keeps coming back very aggressively."

In fact, in February he went home on hospice, and the community threw a big party.

The family was told Julian would only have days to live. But as they document on Facebook, Julian rebounded. But again had to come back to CHOP.

Now 87 days later, still sick and with no new treatment options, he wants to go home. But his parents say he was denied the hospice care available at home in Oswego County because they couldn't handle his needs.

Steve Ross, Julian's father, tells us, "It's disappointing - very disappointing. It's very sad. I just want to fulfill his wishes... He's tired of being in the hospital."

The family's plight to get Julian hospice care at home has gone viral. His Facebook page, Julian's Joust, has 27,000 likes - some thanks to Cincinnati Bengals player Devon Still.

Still's daughter, Leah, was also battling neuroblastoma, and was two doors down from Julian. Last night Still took to Instagram to support the family, and thousands of encouraging messages followed.

"I think that is half of the reason we can stand here and be so strong because we literally have an army that is backing us," Kristi said.

Action News reached out to the Oswego County Health Department. They told us they could not comment due to privacy concerns.

The family is not alone in facing this problem. Nationwide many children end up staying in hospitals because there are not enough services for them in the home setting.

To learn more about Julian's story visit: https://www.facebook.com/JuliansJoust/timeline

And you can visit Julian's GoFundMe page here: http://www.gofundme.com/Juliansjoust