While playing goalie for her soccer team this April, Chloe Cox, a super bright 12-year-old from Texarkana, Texas, was kicked in the head. She stood up holding her head; but seemed okay.
In the weeks that followed, Chloe began to have horrible headaches. Her family doctor diagnosed her with a mild concussion, with instructions to return if the headaches continued or got worse. The headaches continued and her doctor sent her to the ER for CT scan.
Within one 1 hour, the family had a diagnosis: there was a tumor the size of a walnut near her pineal gland—a gland deep inside the brain tucked between the two hemispheres that produces melatonin which the body uses to regulate sleep cycles. Doctors told Chloe’s parents that they were lucky they found the tumor now—all thanks to that kick in the head during soccer which led them to fear a concussion. Any further delay in treatment and Chloe could have died.
Chloe had surgery that evening to relieve the pressure in her brain and to biopsy the tumor. While the family waited on results and for the next steps, Chloe’s oldest sister got married with Chloe right by her side. The biopsy revealed that Chloe had glioblastoma multiforme, with rare histone mutations. This already rare, fast growing tumor was now classified as even rarer.
The next week, Chloe had a tumor resection removing 75-80% of the tumor. Then, Chloe was sent 300 miles away to M.D. Anderson, in Houston, Texas for radiation treatment. Chloe finished 7 1/2 weeks of radiation and now is continuing treatment in a clinical trial at M.D. Anderson in an effort to eradicate the disease and give Chloe her childhood back.
Chloe’s mom, Michelle, left her business and her job of 30 years to be with her daughter during treatment. It was a clear choice; the family had health insurance through Michelle’s husband and Michelle needed to be there for her daughter, in a way she never expected.
“I am so grateful to have the opportunity to be able to be by her side every day. I have truly enjoyed our one on one time and we have laughed a lot together and cried a little, too,” says Michelle.
The void left by Michelle’s income in the family finances was large. Even as their local community rallied around the Cox family, the expense of travel was looming. Chloe and her family have made several trips, sometimes for weeks at a time or multiple times during a month, to M.D. Anderson in Houston, 300 miles from their home. Michelle knew they needed more support to ensure they could afford to get to the critical treatment that Chloe needed.
“The ALSF Travel for Care team stepped up immediately with funding for our hotel expenses. Providing our family with the support we needed to stay together during Chloe’s treatment,” said Michelle.
Chloe’s family is much like many childhood cancer families—who have to travel great distances, multiple times a year and even multiple times in one week for treatment, consultations, medications and surgeries. Pediatric oncology care is so specialized—and even families close to a major cancer center, still may have to travel a distance to reach the most promising treatments. ALSF’s Travel for Care program provides qualifying families with travel grants that help children and their families get to the most promising treatments at facilities across the United States.
Chloe’s cancer—glioblastoma multiforme—typically occurs in adults and is a fast growing tumor. Chloe’s tumor tripled in size between brain surgeries. There are not known cures; but Chloe is determined to beat the disease and pave the way for breakthroughs for other children battling rare brain tumors.
“She is a survivor and a conqueror. Chloe is a force to be reckoned with. Her amazing strength and faith is something that many adults, including me, wish they had,” says Chloe’s mom.
Chloe continues to battle cancer and be an active 12-year-old. She loves her family. She loves to draw. She is funny. She is happy and when Chloe sees someone in need, she goes out of her way to do whatever she can to help.
There have been times in Chloe’s treatment when the family has traveled to the hospital for treatment; only to be turned away because insurance had not yet approved the treatment. They have no choice but to leave and then make the long trip again as soon as insurance approval came through.
“My husband and I have been married 20 years and once we had children, we decided to never spend a night apart from each other and the children. This experience has challenged our family —and it has divided us in ways that are not always pleasant. We are so grateful for the support of ALSF for our travel and for their dedication to funding childhood cancer research” said Michelle.
Tomorrow on #GivingTuesday, Chloe will take over the ALSF Facebook, Twitter and Instagram pages for the day and share more of her story. You can help us help more families like the Cox family travel to treatment by making a Giving Tuesday donation. In one day, ALSF hopes to raise $10,000, enough to help 20 families with travel expenses associated with treatment for childhood cancer. Donate here.