A ‘Lost Boy of Sudan’ Shares History – With Help From Stem Cell Transplantee

After walking 1,000 miles in his bare feet to escape war, and then flying 7,000 more to a new life, it was a few, short steps into a hospital room that helped Panther Ajak Mayen complete his journey.

One of the “Lost Boys of Sudan” who escaped a civil war in his homeland 30 years ago, Mayen, 36, now is a personal care attendant (PCA) at Brigham and Women’s Hospital (BWH). It was a long road from war-torn Sudan to Boston, and with the help of his patient David Reed, Mayen was able to put his life story down on paper.

Panther Mayen.

Mayen spent a week in January 2016 caring for David Reed, a cancer survivor and stem cell transplant recipient treated at Dana-Farber. Over the course of several casual conversations, Reed learned Mayen’s story, and encouraged him to share it with others by writing a book.

A little more than a year later, Mayen has done just that – with editing and publishing help provided by the 75-year-old retiree he now calls his “American father.” Recounting his history for Reed was at times painful, Mayen says, but also very cathartic. Now, he is sending all proceeds from sales of Escaping Nightmare, Living Dreams: A True Story of One of the Lost Boys of Sudan back to his home village for use in purchasing school supplies.

“It was a healing process for me,” says Mayen, who used journals he planned to share with future grandchildren as the basis for his manuscript. “Pain and suffering are part of life, but when you put hope in the middle you can look to another day. That is the same message I share with patients.”

The path that led Mayen to BWH and Reed began in the mid-1980s, when parents in his and other South Sudan villages sent away their young children — mostly boys — to avoid bombings, death, and possible induction into the rebel army fighting against northern invaders. As many as 20,000 children fled their homes, including 6-year-old Mayen, and then spent years battling war zones and starvation before reaching Ethiopia. Another war there in 1991 led them back on the road, this time to Kenya – where Mayen and almost 10,000 boys spent many more years living in mud huts in the Kakuma refugee camp.

David Reed and Panther Mayen in the Healing Garden at Dana-Farber.

Finally, at age 19, Mayen was brought to Boston along with 200 other refugees by Catholic Charities USA. He had been a medic in the refugee camp, which led to a job as a PCA at Brigham and Women’s in 2002. He has remained close with many of his fellow Boston-based refugees, and this summer, he is making his second trip home to Sudan to see his parents and sister. His second sister died in the war.

Here, however, Mayen calls Reed “Dad.” The feeling is shared by Reed, who had his transplant for acute myeloid leukemia under the care of Vincent Ho, MD, in October 2014. Reed believes that his readmission to the BWH for a post-transplant complication that led to his meeting Mayen was serendipitous, and says the satisfaction he has derived from helping his “second son” work through his suppressed emotions is a source of great joy.

“Rewarding is almost an ineffective word,” says Reed, now in remission. “It makes you feel like you know you’ve done something right. Through book sales, he’s should have a nice little donation that he can take back to Sudan to help the schoolchildren.”

“That will make him feel great, and he deserves to feel great,” Reed says.