SWEETWATER, Okla. - Nesha Greer, just 11 years old, was diagnosed with osteosarcoma last summer, a cancerous bone tumor that chemotherapy could not treat.
We met her last month at her home in Sweetwater, Okla., which was filling up with roses from people responding to a "Team Nesha" Facebook request.
Her family wanted to celebrate Valentine's Day early because cancer was winning the battle.
They hired Faith Hospice in Elk City to make her final days pain-free.
But they said Nesha has been suffering.
"When she hurts and you can't stop it, to listen to her moan like she is right now, is not fair," Nesha's mother, Perisha Hagerman, said. "It shouldn't ever have to happen. She shouldn't have to hurt."
Hagerman is keeping the lights down in her daughter's bedroom and giving her pain medication.
She said hospice nurses come to the home to care for Nesha but Hagerman was shocked when she had to tell one nurse she wasn't correctly flushing Nesha's catheter.
"I googled it on my phone and showed it to her and said 'you did that wrong, 'and she read what I pulled up on Google and she's like 'I did', and I'm like OK, really? She's an RN."
Hagerman added it's sometimes a fight to get hospice nurses to come out when Nesha said her pain level is a "7 out of 10."
"Yesterday, I had to call my family doctor and say, 'can I do something different,' because this is not working and there's no nurses here trying to figure out how to make it work."
"Sometimes it's not possible to get rid of all the pain," Terry Gonsoulin with Integris Hospice said Thursday. "But what we do try to do is look at ways in which we can decrease that pain to a level that's comfortable for both the patient and the family.
Gonsoulin said other options for families who aren't satisfied with hospice care include respite care, or private care, which Hagerman said she may use.
When we called Faith Hospice in Elk City, they hung up on us.
In person, they said they couldn't comment because of HIPAA (Health Insurance Portability and Accountability Act) laws.
However, the Oklahoma City corporate office for Faith Hospice did call us back and said they are dedicated to providing the highest quality of care to all of their patients.
If you have a complaint about hospice care, you can call a hotline to the Oklahoma State Department of Health at (800) 234-7258.
Another resource available is the Oklahoma Hospice and Palliative Care Association at (405) 513-8602.