When Josiah was 6 months old, he was found to have a large, cancerous brain tumor called glioma astrocytoma. “We were in shock,” remembered his mother, Merri. He underwent surgery, but because of the tumor’s location in his brain, it could not be completely removed.
Once Josiah recovered from surgery at a local hospital, he was referred to St. Jude Children’s Research Hospital. At St. Jude, baby Josiah received 16 rounds of chemotherapy to fight the remaining tumor. Two weeks after Josiah finished chemotherapy, his sister was born. And more recently, his baby brother — named Jude — arrived.
Josiah is now 6 years old and, with siblings in tow, still visits St. Jude regularly for continuing physical, speech and occupational therapies as well as checkups and scans. “I know my childhood and my husband’s childhood were totally different from theirs,” said Merri. “Sometimes that’s hard and I feel a little sad about that. But, then…this is normal for them.”
He loves his doctors and nurses. For him, St. Jude is a play place first and then a hospital.
Merri shares her years of knowledge and experience with other St. Jude families as a PAIR (Parents Assisting Inspiring Reassuring) Mentor, through the Volunteer Services department at St. Jude. PAIR Mentors are highly trained St. Jude parent volunteers who help new arrivals learn to navigate what can be a very hard road. Through the PAIR Mentor program, these volunteers offer a lifeline to families like theirs — families struck by childhood cancer.
“I was interested in the program because that was what I needed,” said Merri. When her family arrived at St. Jude, Merri wished she could talk to an experienced St. Jude parent.
Over time, Merri realized she could be that person for someone else. “I felt like we knew a lot about the hospital," she said. “And I wanted to help parents just facing this. You can tell those parents by the look on their faces and you remember having seen that face in the mirror. It’s been great working with the volunteer team.”
As for Josiah’s St. Jude journey, his most recent scans showed the tumor remains stable, which is good news. He loves to listen to music, sing, dance and play with his little sister and baby brother.
Help give hope to kids like Josiah who are fighting life-threatening illnesses.
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