Daryl, a father of six children who had lost his mother to breast cancer when he was just 9 years old, had been living with cancer for several years. Tests conducted as part of his treatment had revealed the genetic mutation Li-Fraumeni Syndrome (LFS). People usually have two copies of a particular cancer-fighting gene but having LFS meant that Daryl had only one copy, making him more likely to develop the condition. Daryl was also devastated to discover that this genetic mutation was hereditary. Subsequent testing showed that three of Daryl and his wife Erica’s six children also tested positive for LFS but were thankfully cancer-free.
The doctor responsible for Daryl’s care, Dr. Joshua Schiffman, was at the time researching into a possible cancer cure involving elephants as they have 40 copies of the cancer-fighting gene. Daryl provided blood samples that Dr. Joshua Schiffman was using along with others from people with LFS to study alongside the blood of some of the elephants at the Center for Elephant Conservation (CEC), a facility dedicated to the conservation, breeding, and understanding of elephants.
When Daryl learned that his cancer was terminal, he reached out to Dream Foundation, an organization that fulfills final Dreams for terminally-ill adults and their families across the nation. CEO Kisa Heyer explains, “Having a final Dream come true can bring comfort or closure and plays an important part of a palliative care program. An independent study run in conjunction with the American Psychiatric Association showed that 80% of Dream recipients reported a greater sense of well-being after a Dream.”
Daryl told Dream Foundation that he wanted to take his family to the CEC to meet the gentle giants who could hold the key to hope for his children. Erica remembers the time very well.
What do you most remember about the time when Daryl received his diagnosis?
It was about a year and a half into our marriage. His mother had passed away from cancer, but he never got tested for LFS. I pushed him to get tested. He had all sorts of tests and an MRI showed that he had a brain tumor. It was a huge shock as he had no symptoms and we had no idea it was coming. We were both really young, we had an 8-month-old baby and we were expecting our second child. We thought we had a huge long life ahead of us. They told us that whatever treatment he had, it was a type of tumor that would keep coming back and that one day it would get the best of him. That was really disheartening.
Were there many treatments for him to consider?
We were cautious of chemotherapy and radiation. Daryl’s father and two cousins had passed away from brain tumors and after they had chemotherapy their health spiraled down, so the only option was surgery.
Was there anything that offered Daryl hope or solace in his last few months/years?
Quite by chance, Dr. Joshua Schiffman, who was responsible for Daryl’s care, was at the zoo one day with his children and they went to see the elephants. The elephant keeper mentioned that they rarely got cancer. Dr. Schiffman asked if he could have some of the blood that they drew from the elephants every day as part of their overall care program so he could start his research. First it was just Dr. Schiffman on his own, but now there’s a whole lab and a team. Daryl wanted to be part of it, so his blood was used.
At one point when Daryl was really sick, we went up to visit the lab. I remember the look on Daryl’s face. He was so excited.
On the morning that Daryl went in for his final surgery, Dr. Schiffer’s research had been published in a renowned medical journal and there were hundreds of articles all over the world about it. Daryl got so excited. I think deep in his heart it was the right thing to give him hope.
And then there was Dream Foundation. A friend told me about this dream-granting organization for terminally-ill adults that had made her husband’s dream come true. I told Daryl, and he immediately said that he would love to go and see the elephants in Florida.
On that trip, I watched Daryl staring into the eyes of the elephant and petting its trunk and saw a flame of hope and gratitude in his eyes. That night, Daryl had a dream that an elephant took its trunk and was able to go into his head and scoop out his brain tumor.
What do you and your children most remember about this trip to see the elephants and how did this impact your final moments with Daryl and your ability to cope with what was happening?
Daryl passed 3 months after that trip, nearly 3 years ago. The longer you go, the more you forget, and the kids just remember their dad being sick or sleeping or being in the hospital, so that trip stands out as the one really positive thing in that time frame of remembering their dad.
It was great to have that time to be together in the moment where cancer didn’t matter, where we got to be mom and dad and the kids. Right after we got home, Daryl started spiraling down so it was probably the last time our kids interacted and had real conversations with him.
What is your advice for others out there that are either sick or have a loved one who is sick?
I think the greatest thing you can do in those moments when you’re dealing with terminal illness is really just spend that time together. It’s difficult to put things aside. You have to keep life running, but something I wish had done more was reach out to our family, community and neighbors and let them deal with everyday things so we could just sit and be together.
Postscript: Erica Means gave birth to her and Daryl’s seventh child three months after Daryl passed away. The infant tested positive for LFS. Dr. Schiffman’s research continues.
This article originally appeared in the Winter 2019 Issue of The MassBio Insider, MassBio’s new magazine.