Helana was a kind, sweet, gentle person who excelled in school and was very creative. Born in 1979, she was diagnosed as a baby with an ASD (a hole in one of the atria of her heart) and was seen regularly at CHOP. Just before her fifth birthday, she developed what seemed like a stubborn virus, which was ultimately diagnosed as cancer - Stage III neuroblastoma.

Helana was given a chemo and radiation protocol. She went into remission, which surprised the experts. Her left adrenal gland was gobbled up and the tumor was removed in a 13 hour operation. Her cancer was extremely aggressive. Her parents were approached by the transplant doctors - they wanted Helana to be the first child in the remission stage, with no cancer in the marrow, and to have an autologous bone marrow transplant. Her parents accepted the challenge.

Helana’s heart had to be repaired first and then she went through a thorough medical workup.  The odds at that time (in 1984) to survive the transplant itself were only about 20 %.  The transplant was really rough and Helana needed many donors for the blood products she would need. Her doctors wanted 20, and her parents got 50. They were involved in every phase and her mother was at the hospital 24/7.

After dealing with several infections and other problems, Helana’s marrow finally engrafted after a long 5 and a half weeks. Her parents know that Helana’s experience, harrowing as it had been, had given the doctors tons of information about transplants and how to fine tune the transplant process.

Throughout her life, Helena had medically induced severe asthma which affected her stamina and strength. Nonetheless, she grew up and earned her BA in early childhood education. Her dream of being a kindergarten teacher was squashed when she was diagnosed in her last year of college with Hepatitis C.  Helana did not feel comfortable working with the little ones for fear of passing it on.  Helana’s other dream in life was to be married and have a family.  She met the love of her life, and after 7 years, they married. On the day after her wedding, on the way to her honeymoon, both of Helana’s lungs collapsed on the plane and even though there were three nurses on board, they could not save her. Helana passed at the age of 31.  Her family feels that they were blessed with 26 more years with Helana than the doctors ever thought they would have, and that she is now watching over them.

Helana’s Motto: “Reach for the pot of gold at the end of the rainbow.”

Information provided by Jacqueline T. Agi, Helana’s mother
October 2014


Helena with her parents around the age of 8

Helena around the age of 28