You couldn't tell just by looking that this healthy, energetic five-year-old spent most of her life fighting cancer. And, not just any cancer. At 18 months, Lauren was diagnosed with one of the rarest cancers in the world — Pleuropulmonary Blastoma or PPB. Only .01 percent of children who are diagnosed with cancer have PPB. Only 302 cases have been identified worldwide. Lauren was one of only two children to have this type of cancer in Texas. Not a distinction anyone would want for their child.
"If your child is diagnosed with a very rare disease, you want to find every bit of information possible," said Tricia Barksdale-Garza, Lauren's mom. "We immersed ourselves in researching the best treatments available and how we could bring them to our daughter."
Tricia took to the internet and found an international website registry
where families and physicians come together to collect and dispense information, facilitate research, and post publications on treatments for PPB. This registry is maintained in part by The Children's Hospital and Clinics of Minnesota and charitable contributions. "There's no doubt in my mind this registry, in providing a place to learn and share, gave Lauren's physician life-saving information for her treatment," Lauren's step-dad Daniel said. "Now, through research funded by this site, doctors have identified the gene specifically connected for PPB."
They were also fortunate to find a local pediatric oncologist Dr. Mahendra Patel, who was willing to go the extra mile in learning how to treat — and cure, in this case — PPB. He performed the surgery on Lauren to remove a very large tumor and was in charge of subsequent chemotherapy treatments. Lauren finished treatments when she was three years old, but continues under Dr. Patel's watchful eye.
In addition to the medical treatments, Tricia, Daniel, and their whole family found support on CaringBridge
, a nonprofit which provides free websites, connecting people experiencing any kind of significant health challenge to family and friends. CaringBridge websites offer a personal space to communicate, saving time and emotional energy when health matters most. Parents and family add health updates and photos to share their story, while visitors leave messages of love, hope, and encouragement.
"This was a difficult emotional journey and being able to write about it, to share with others going through similar situations, and receive all the loving comments was extremely helpful for all of us," said Tricia. I read some of the journal entries and was deeply moved. I'm convinced this medium for vocalizing hopes, fears, disappointments, and joys surely made this difficult journey a bit easier.
If Lauren stays cancer-free for one just more year, she will be pronounced cured. Join me in wishing Lauren and her family the best possible outcome. If anyone you know could use either the PPB registry or the CaringBridge opportunity, please refer them.
San Antonio activist and nonprofit veteran Laura Carter believes in enabling the community to work from the heart, not just the wallet. During her time at the San Antonio Area Foundation, Laura implemented new technology, managing website design and content for all published materials. She introduced multimedia and social media into the communications plan, increasing the community's participation in the Foundation's programs. She is now Communications Director at Providence Catholic School.
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