A Web of Support for this Childhood Cancer Hero

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Alex’s Lemonade Stand Foundation Hero Ambassador Amy Costley used CaringBridge to connect and receive support during daughter Karli’s cancer journey.

Karli Christian Costley has big, baby-blue eyes with eyelashes that “could sweep the floor.” In August 2008, Karli’s mom, Amy, noticed that something wasn’t right. Karli’s eyes and vision were threatened by a diagnosis of retinoblastoma – a rapidly developing cancer that begins in the retina.

When Karli was first diagnosed, the Costleys were busy – not just with visits to the doctor, but keeping up with text messages, phone calls and emails. At one point, they received 400 text messages and 40 emails about Karli’s diagnosis in one day. How could they respond to everyone quickly? Amy had been following another child’s story on CaringBridge, so she turned to the website.  After a text message blast to loved ones directing them to Karli’s site, their phones and inboxes quieted – everyone was reading updates online.

Amy says, “There were no more mass texts coming in (so many that our phone could not store a days’ worth). There was peace. There was quiet time for our family and for us to spend together. There was time to stop and hold this child that just had her world turned upside-down.”

Amy also turned to Alex’s Lemonade Stand Foundation (ALSF) for childhood cancer information and resources. She knew it would be beneficial to connect with family and friends as well as others who really understood the childhood cancer journey.

Initially, the doctors at Vanderbilt’s Monroe Carroll Children’s Hospital diagnosed Karli with a sporadic case of retinoblastoma in her left eye, but an additional exam also showed a small amount of tumor seeding in her right eye, as well. Karli’s right eye was treated with one round of cryotherapy and the tumor in that eye has never recurred.

KarliTreatment for the cancer in Karli’s left eye was not as simple. Many exams showed that Karli’s left eye needed to be removed in order to ensure Karli would be okay. However, during an appointment with the surgeon who would remove her eye, the Costley family learned about a new clinical trial at the Memorial Sloan-Kettering Cancer Center in New York City.

The Costleys packed up all of their things and their hopes and traveled to New York. Karli was allowed into the trial, which offered a less than 30 percent chance of efficacy on her tumor, but also gave her left eye a fighting chance.

At the beginning of the trial, Karli did not have any vision in her left eye. She had six full rounds of intra-arterial chemotherapy, and after the first treatment, she began to see light and dark. As of March 3, 2009, Karli’s results were clear and she did not have to have any more chemotherapy.

The road wasn’t completely clear just yet; in July 2009 Karli’s left eye displayed signs of seeding. After another two-day radiation plaque, Karli’s results again came back clear with “no evidence of active disease.” Karli learned in November 2009 that she had a defect on her RB1 gene, meaning that she is likely to develop other types of cancer.

Karli has regained much vision in her left eye. She now visits the treatment center in New York every 12 weeks for reevaluation. The Costleys are thankful for Karli’s progress and are living for each day.

During all of this, the biggest perk of using CaringBridge for the Costleys was unexpected. Amy was able to sit down and put her innermost thoughts, worries, fears and prayer needs into writing. She calls the website her “sanity” because the writing was so therapeutic. Amy and her family would return to the site throughout the day to see the posts and heart-warming messages left by loved ones, including people they’d connected with through ALSF. CaringBridge is an important tool Amy recommends to other families who are going through a similarly difficult situation.

Amy also recommends ALSF, which provided her with treatment journals and helpful cancer information. She used CaringBridge to share information about lemonade stands she was hosting or attending with other ALSF volunteers. Now Amy’s an Ambassador – speaking on behalf of ALSF to raise awareness and educate the community about childhood cancer – because she’s passionate about giving back to an organization that’s given her so much.

As of March 2011, Karli’s website has received more than 299,000 overall visits from family and friends. Amy says, “We could never give back all that we have received.”

For more information or to create your own CaringBridge site, visit www.caringbridge.org/alexslemonade.