Help On The Journey

Love of family, neighbors help girl through struggle with rare cancer

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Julia Griffith is on a journey.

She shares her path with a paint mare named Holly, slumber parties with her sister, Amie, and the children in the oncology ward at Phoenix Children's Hospital.

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One of Julia Griffith's dreams came true when the Arizona chapter of Make-A-Wish found Deon Allen to paint her mare, Holly, on the wall of her bedroom. "He painted all sorts of things for me to find," Julia said. The names of her family and a special friend are painted in the clouds, a small cat sits on a hilltop and there are hearts and stars within the mural.

"In the three weeks she was there, she became the nanny of the floor (for the younger children) and parents could get a break," Debbie Griffith said.

"Don't tell that story," Julia said.

Easy to see how Julia, with her amicable laugh and frequent giggles, encourages others to laugh with her.

The 17-year-old was on the ward because she has a rare form of cancer, synovial sarcoma.

"Don't ask me how to spell it," Julia said. Then she did.

Only 17 people in the United States under the age of 25 have this disease.


Make-A-WishMake-A-Wish Foundation of Arizona grants the wishes of children who have life-threatening diseases or are facing terminal illnesses. Doctors can refer children who are at least 2 years old through age 17. "We don't often have Make-A-Wish children in northern Gila County but when we do, it is nice to have area volunteers," said Adrian Lopez of Make-A-Wish. "It is rewarding," said volunteer Nicole Edgington. "Kids go though so much scary stuff when they are terminal, so when you can do something so amazingly big, it's great."

Nearly six months ago, when the surgeon opened Julia's right lung expecting to find a serious infection, he found a tumor that had burst.

He cut away half her lung.

Released from the hospital, and at home in Star Valley for just a week, Julia was flown once again back to Phoenix Children's Hospital where doctors found more tumors.

The cancer is aggressive and its cells are in Julia's liver now.

She has been in and out of the hospital and Hospice House ever since.

At one point, as she listened to her daughter talk about what she wanted to do in life, Debbie was concerned her daughter was in denial.

"But it was hope," Debbie said. "She has taught me how to hope. I don't ever give up or take away hope."

The day is sunny, yet cold, as Julia sits restlessly in a recliner discussing her medications with a member of her hospice team.

The two young women do not look more than five years apart in age.

While Julia discusses how she feels, her mother tells another story.

Mother and daughter suffer from a debilitating muscle disease that left Debbie in a wheelchair. On the white board that hangs in the family kitchen, Julia has created a chart of medications and IVs for herself and her mother.

"When I didn't check off my medication one morning, Julia drew a little frowny face on the board," Debbie said.

"Today is a good day, because I took my Ritalin this morning, so I have energy," Julia said.

The phone rings and Julia gets up to answer it.

"She takes the drug when she needs to so she can do the things she wants to do," said Kathleen Hughes of RTA Hospice and Palliative Care.

Upon return, Julia nestles on the couch into Kathleen's arms, feet tucked beneath her.

When her 15-year-old sister, Amie, walks in the door from school, Julia's smile is huge.

The family is supportive of each other. Julia's grandmother, her brother, Marc, and his wife moved to town to be close to her.

Individuals, organizations in the community and the Make-A-Wish Foundation have also helped make Julia's dreams come true.

Sandra and Gary Walker met Julia when Dr. Judith Hunt told them her young horse-loving patient wanted to attend a 4-H horse training.

"I've always loved the painted horses -- their colors and patterns," Julia said.

She wished for a paint mare 16 hands tall.

"Julia and I became close," Sandra said. "I lost my sister, so I understand. I want to make every day better for Julia than the one before."

The Walkers knew a couple, Phil and Birgit Spencer who had just the horse.

After hearing her story, the Spencers gave Holly to Julia as her very own.

"Holly has a dolphin pattern on one side and a piranha on the other, so I call her my sea horse," Julia said. "She loves to lay down and roll in the dirt, too."

The Spencers provide Holly's feed while the Walkers, who live near Julia, board and care for her so Julia can see Holly whenever she wants.

Riding Holly is her special pleasure, even though 20 minutes at one time has become too long and physically painful.

Make-A-Wish wanted to help Julia get the horse but could not, Debbie said.

So the foundation stepped up in another way.

Nicole Edgington, a MAW volunteer from Pinetop, found muralist Deon Allen of Chandler to paint Holly on Julia's bedroom wall and Debbie Gaby of Sleep America to provide Julia with an adjustable bed.

Payson Community Christian School gave Julia a special graduation ceremony in December.

Mountain Bible Church gave Julia money for a portable DVD player and a game station to help keep her occupied during hospital and hospice stays.

Courtesy of a donation by the Hospice Foundation, Sandra and Amie went on a decorating spree to add magical pieces to the baby blue walls Julia chose for her bedroom.

The two picked out a horse lamp, Pegasus vase and shelves for pictures. Amie found special lace, then sewed it on a pillow for her sister.

The room was ready Wednesday when Julia came home from Hospice.

The painting of Holly watches over her at night.

Allen painted part of the mural with fluorescent paint, so when it is dark, a heart of stars appears in the soft clouds that surround Holly's likeness.

When the morning sun shines in her window Julia opens her eyes to Holly running through the clouds.

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