Rare type of brain cancer is a losing battle for children

11:49 PM, Feb 9, 2012   |    comments
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  • Trinity Petit's tumor can't be operated on, and can't be treated with chemotherapy.

    Doctor Cathy Kelly-Langen, with the palliative care department at Akron Children's Hospital, is on call for Trinity and her family 24/7.

    She explains what makes Trinity's type of cancer, called DIPG, so difficult to treat.

    DIPG stands for Diffuse Intrinsic Pontine Glioma.

    "It occurs in an area of the brain called the pons, near the spinal chord. All the information that comes down from your brain down to your body goes through there. It's right near where your spinal cord starts. That's where your brain holds all the information about how to remember to breathe. How to make sure your heart's running," Dr. Kelly-Langen said.

    In the nine years she's worked in palliative care, Dr. Kelly-Langen has only seen three or four children with DIPG.

    She says the only word for it is heart-breaking.

    "It certainly reminds us, especially here in this department, to take every day as very special and every moment with a child as very special," Dr. Kelly-Langen said.

    At Rainbow Babies and Children's hospital, doctors diagnose one to two cases every year to every other year.

    True survival for the disease is less than 5 to 10 percent within two years.

    Rainbow Babies and Children's hospital is working on opening a trial sponsored by Boston Children's Hospital.

    Doctors say the rarity of DIPG tumors and the location in the brain makes it hard to advance the science.

    To wit, there is little funding for research around the country.

    But one local family, who lost their own daughter to DIPG, has started a foundation to raise money for research, treatments and the hope of finding a cure.

    Megan and Ed McNamara lost their daughter, Maria, in 2007.

    Since her diagnosis, Prayers for Maria has raised over $200,000 in desperately needed grant money.

    Prayers From Maria works with the top specialists in the field in from hospitals and research institutions around the country.

    Click on the link on this page to learn how to get involved with this Northeast Ohio-based non-profit.

    Trinity's story:

    When she came inside from playing in the snow on January 14, her mother handed her an art project, and Trinity dropped it. 

    Not only was she unable to hold anything, her mother noticed Trinity was limping on one of her legs.

    They rushed her to Akron Children's Hospital, where doctors immediately began tests and brain scans.

    Three hours later, a diagnosis: Diffuse Intrinsic Pontine Glioma.

    An aggressive, inoperable brain tumor.

    The survival rate for children with DIPG is 30 percent, and Trinity's case is extremely rare.

    Just three weeks later, Trinity is paralyzed and losing her eye sight.

    Pediatric cancer doctors told the family that at best, radiation would prolong Trinity's life for weeks, but no more than a few months.

    So the family opted for hospice, and her parents promised to give Trinity everything she wanted for as long as they can.

    Trinity turned nine on December 23, but usually has a birthday party in January (so her presents aren't wrapped in Christmas paper). 

    When the diagnosis came up, the party was postponed.

    But Akron Children's Hospital contacted the Canton-based group, Wishes Can Happen, and told them about Trinity.

    For 30 years, Wishes Can Happen has made dreams come true for local children with life threatening illnesses.

    Many of the all-volunteer organization are parents whose own children have faced similar health issues.  

    So with just five days' notice, the volunteers pulled together a special birthday party on Super Bowl Sunday.

    DJs sang her favorite songs, and a caterer made her favorite meal.  Volunteers also included a ventriloquist, a balloon maker and a fire eater.

    Trinity even got to pet a miniature horse (her favorite animal). 

    "They've been fantastic. Very sweet people. They've met Trinity and been so great. She had a fantastic birthday," said Tiffany.

    Of course, there were lots of hugs and pictures for everyone.

    Justin Bieber overnighted her a special gift basket from Los Angeles.

    Trinity says she'd love to receive a Happy Birthday video message from Justin! WKYC sent Justin Bieber a Tweet about her request, and you can too. 

    Tweet: @justinbieber, Send a Happy Birthday video to Trinity.

    The Petits are incredibly thankful.  Right now, they're making each moment count.

    A fund has been set up to help the Petits. Donations can be made in Trinity's name at Huntington Bank.


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