“He hated being in the hospital, but he dealt with it better than I ever could have imagined,” – Amber, Thomas’s mom

It all started with innocent headaches, until one day, Thomas suffered one so severe he found himself screaming for almost an hour. His mom, Amber called a nurse who said it could just be signs of meningitis, but Amber was dubious. They wound up at the doctor several more times due to headaches and underwent a battery of tests. Still, they insisted Thomas was fine.

Nearly two months after the headaches started, they finally had an answer. When neurologists couldn’t see something they should’ve on a standard test, they knew he had unnecessary pressure in his brain. An MRI later that day ultimately revealed the tumor that was pressing on his left occipital lobe.

“He actually lost vision and we had no idea,” said Amber.

The diagnosis was rare. So rare that the doctors at Walter Reed National Military Medical Center in Maryland said there were only two other cases they had seen. It was desmoplastic small round cell tumor, a sarcoma that typically only occurs in the abdomen, but had taken root in Thomas’s brain. After two rounds of chemotherapy, doctors sent them to Children’s Hospital of Philadelphia (CHOP) for proton therapy.

The quick switch in treatments didn’t give Amber much time to search for lodging in Philadelphia. When the nearby Ronald McDonald House was full, she was staring at a whopping $1,000/week hotel stay. So she went to their local social worker for help.

“She said, ‘Oh I know exactly who can help you,’” said Amber. “She took care of all the paperwork and Alex’s Lemonade Stand Foundation just paid the hotel directly. It was really cool.”

With the hotel stay taken care of, Amber could focus on ensuring Thomas got the treatment he needed. That entailed 31 arduous rounds of proton therapy at CHOP and another eight rounds of chemotherapy back at Walter Reed near their home in Fort Meade, MD.

Thomas may not have found a ton of joy in his treatment, but his persistence helped him get through it.

“Chemo did the typical things that made him sick. He hated the taste of the medicine. He hated being in the hospital, but he dealt with it better than I ever could have imagined,” said Amber.

The severity of Thomas’s case isn’t lost on his family. With a rare diagnosis also comes lengthy odds of survival. Given the unique location and type of tumor, doctors are unsure of what could happen, even after a successful surgery to remove the entire tumor.

“We’ve been told it could act differently in the brain than in the abdomen,” said Amber. “For his cancer type, the life expectancy is low; it’s an aggressive sarcoma.”

At this point, the best the family can do is enjoy all the time they get with Thomas. Despite some vision issues, he continues to be full of life and a joyful brother to his four sisters. Some are too young to realize what’s going on, but the SuperSib program has been special for his younger sister Eleanor.

“My older daughter, Emily, enjoys getting the letters as a nice extra, but when Eleanor gets a SuperSib letter she thinks it’s the most awesome thing ever,” said Amber.

In Amber’s words, Thomas is “the glue that holds them all together.” To be such a pivotal part of their family, even while facing such a difficult disease at only 8 years old, demonstrates just how tough Thomas is. Thankfully, none of their follow-up MRI’s have revealed new tumor growths.

The family feels so fortunate to know about Alex’s Lemonade Stand Foundation (ALSF) and receive resources and assistance to get through this heartbreaking situation.

“When your child gets a brain tumor, you reach out to organizations and sometimes they’re not in your area or they can’t help,” said Amber. “But when we finally found ALSF and the other places specifically supporting pediatric cancer, you suddenly realize you’re not doing this alone. There is help.”