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Sarah’s Journey with Cancer and a Clinical Trial

The trial is testing an infusion in conjunction with chemo and requires visits to the hospital for 5 days in a row, every three weeks. Chris says Sarah has handled it like a pro.

When Chris Pulliam and his wife Noriko first noticed a lump on their daughter Sarah’s cheek in 2021, they didn’t initially worry. Their pediatrician thought it was allergies. A scan was ordered just to be safe and the news that came back was shocking and devastating. Sarah had a tumor called rhabdomyosarcoma. It was stage 3.

The Pulliam Family - Sarah is participating in a clinical trial.

The Pulliam’s live in Denton, Texas, just north of Dallas Fort Worth and were sent to Dallas Children Hospital for treatment. Doctors decided to hold off as long as possible on surgery because Sarah’s tumor was right by her eye and very close to her brain. But when chemotherapy failed to work and the tumor continued to grow – surgery couldn’t be avoided. The 16-hour procedure was a big success. Doctors got the entire tumor with no damage to Sarah’s eye or brain. She did one more round of chemo and in January 2022 was declared in remission.

Life got back to normal for Sarah and her family in 2022 but at her routine scans one year later in January 2023, they discovered the cancer was back and in her lungs. Once again, chemo didn’t help so Sarah was started on radiation and her doctors began to look for a clinical trial. Her family was thrilled when she got into one at her hospital in May 2023. But the logistics of participating quickly grew daunting.

The trial is testing an infusion in conjunction with chemo and requires visits to the hospital for 5 days in a row (Tuesday-Saturday) every three weeks. Chris says Sarah has handled it like a pro. She lost her hair and her appetite but she’s still in school – in 6th grade – and whenever she’s not in treatment, she’s playing volleyball, which she loves. “She never complains about feeling poorly or feels sorry for herself. She has kept on living her life,” Chris says.

Chris and his wife weren’t complaining either – but they were struggling to keep up with the costs of traveling to the trial so frequently. They are a one-income family of four. Chris manages an emergency call center and says he is very lucky that he’s been able to maintain a full time job thanks to employers who have been very gracious and kind. But his wife hasn’t been able to work as an interior designer while caring for Sarah so the costs of getting to the trial, even though it’s in town, added up quickly.

“The trial site is 35 miles from our house and parking is free but gas, mileage and especially tolls really add up. Lazarex has been a huge help with tolls. There is a toll lane from where we live to downtown Dallas and it’s quite expensive. It can be as much as $25 one way with traffic so we wouldn’t take those toll lanes if we weren’t getting reimbursed. The thought wouldn’t have even occurred to us to try. Doing that 5 days in a row would get way too expensive,” Chris says.

“But it’s rush hour in North Texas traffic and it can be pretty bad,” he continues. “If we had to  drive in the regular lane, we would have to leave the house more than an hour earlier than we do. Using the tolls gives Sarah extra time to rest in the morning, which is really important because she’s so tired during these 5 day regimens and it’s hard for her to get up in the morning. Honestly, having the ability to take that toll road has made such a big difference for her. This trial is important but it’s really physically and emotionally taxing so that extra time and extra rest for her has been very impactful.”

Sarah’s future in the trial now depends on what future scans show. But Chris says he’s so thankful she’s in it now and that Lazarex is there to help. “We are grateful for all the strength and support we have gotten – from friends, family and resources like Lazarex. It all helps.”

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