You can make a difference–join in or support The Hour of Power and the Ted Mullin Fund!
Chances are, somewhere you’ve heard about the Hour of Power, or the Ted Mullin Fund, created to support research for and awareness of pediatric sarcoma.
The power of the Internet inspires a circle of love—love that supported one Winnetka family through a parent’s worst tragedy.
Sent: Thursday, May 27, 2004 3:33 PM
Subject: Ted Mullin
Ted’s tumor is cancerous.
It is a sinovial cell sarcoma (soft tissue cancer). Of the two types of sarcoma that it might be, the oncologist tells us that synovial cell is “better” to have – at least the waiting is over. In the words of a friend, “We have to play the hand we are dealt.”
The message you just read was sent from Winnetkan Mary Henry to 10 relatives and close family friends three years ago, launching what became known as Ted’s Journey No. 1- the first entry in what would become a widespread, heart-wrenching tome about her son’s battle with cancer. Ted Mullin was then 20 years old, a New Trier graduate, sophomore academic and swimming all-star at Carleton College in Minnesota, and the oldest of three children born to Henry and her husband, Rick Mullin, owner of a small business based in Northbrook.
As the Internet rocketed the missives across town and around the world at lightning speed, legions of friends and supporters clamored to follow Ted’s Journey. And those poignantly crafted messages (Henry is a Harvard English Ph.D.) brought to life Ted’s treatment and the Mullin family dynamics for the ever-widening circle of Ted’s Journey recipients.
Sent: Tuesday, June 22, 2004 5:40 PM
Subject: Ted’s Journey #9
I marvel at the resilience of the human body. On Saturday morning Ted’s white blood cell count was a frighteningly low 0.3 (normal range is 3.5-10). Forty-eight hours later the count has risen to 4.9. Think of the biological and chemical activity and organization that underlies such growth. Next Monday, think/pray tumor shrinkage.
Rounded, reserved Henry, who wears glasses and her salt-and-pepper hair in a short style befitting her serious, maternal demeanor, recently joined her husband and their youngest child, Catherine, in their cherry-paneled den to describe how those messages helped them. “We wanted people to hear the same factual information at the same time. It protected us when it was hard to have the energy to answer the calls and questions,” Henry explains. “It also became a reflective tool for me.”
“We tried to be positive, but not Pollyanna,” Rick Mullin says. While the messages helped build a very large circle of love and support for the entire Mullin family, Ted’s Journey also revealed the patient as a wry philosopher and determined athlete.
Sent: Tuesday, August 03, 2004 2:24 PM
Subject: Ted’s Journey #16
His physical fitness has strung a real safety net below him, in both the literal sense that he was in excellent shape at the start of the chemo but more importantly in a psychological sense – he remembers vividly that sense of wellness and achievement that comes with being an athlete who can push his body to accomplish hard tasks. He even compares the nausea of chemo with the nausea of swimming the mile. I’m afraid the chemo may eventually win that match-up, but even so, he has reference points that tell him he can outlast the cancer.
Gifts to Ted arrived from around the world including an official U.S. Olympic Team swim cap autographed by Michael Phelps and the rest of the ’04 team, a “Livestrong” cap from Tour De France winner and “It’s Not About The Bike” cancer survivor Lance Armstrong and more.
Sent: Thursday, October 27, 2005 10:08 AM
Subject: Ted’s Journey #51
At 11:02 p.m. last night Ted Mullin stood in our den, a glass of champagne in one hand and a Tadahito Iguchi autographed ball in the other, both raised in celebration of the 2005 World Series Champion Chicago White Sox. Earlier in the day Ted asked me if we had any champagne in the house to put on ice. What a un-Chicago-like display of confidence! We iced the bubbly, the Sox iced the Astros.
Readers followed Ted through too many rounds of chemotherapy to count and multiple surgeries, into remission and, unfortunately, through the cancer’s metastasis to his lungs. Ted’s Journey made technical medical terminology and procedures accessible, understandable, and even entertaining, with phrases like “Adventures in Neutroprenia Episode Two.”
At least one doctor, internist Dr. Pat Logan, now shares Ted’s Journey with his medical school students. Throughout treatment, even while nauseous, Ted worked out almost daily and helped coach younger swimmers. During and after remission, Ted also spent as much time as possible at college, where he continued competing, captained two Relay For Life cancer fund-raising teams and earned top 10 percent of the class grades and the Damon Merit Scholarship. Also, Ted was twice elected captain of his swim team.
For more than two years, Mary Henry’s factual, well-crafted messages remained positive, not Pollyanna. Readers either forgot that only 10-15 percent of patients survive when sarcoma hits the lungs, or they assumed that Ted would end up in the good statistics. So when this next message came, one Saturday night in August 2006, readers were in shock:
Sent: Saturday, August 12, 2006 5:54 PM
Subject: Ted’s Journey #74
This is the email that was never supposed to be part of Ted’s Journey. There is no easy way to tell you that we engaged hospice care for Ted yesterday afternoon because he will not survive the cancer.
“Ted’s Journey helped build a large community around him,”” his father says. “He, and we, felt loved.” They frequently received e-mails saying, “You don’t know us, but please know that we are praying for Ted and you.”
Henry adds, “Sometimes you read that the Internet is isolating, but this was just the opposite.” Ted Mullin died at home on Sunday, Sept. 3, 2006, surrounded by family, his oncologist and a circle of love and support that spanned at least 15 states and crossed the Atlantic Ocean. And the amazing part is, this Journey didn’t die with Ted. On May 5 at 7:40 a.m. less than nine months after his death a message titled “Ted’s Journey No. 77” inspired readers, and Make It Better, to action:
Twenty-three years ago today Ted came into our family at 6:02 a.m. on a chilly spring Saturday in Chicago. In Louisville, Kentucky, my hometown, it was Derby Day. Swale won the 1984 “Run for the Roses.” This year Ted’s birthday once again falls on the first Saturday in May, coinciding with the 133rd running of the Kentucky Derby at Churchill Downs, an alignment of the stars that somehow seems a fitting occasion for an email. The problem is, where to start? I used to find it hard to write about Ted’s journey through cancer treatment. Now I know that was the easy part. What do I call this email? Is it still “Ted’s Journey?” Rick’s answer, hitting the nail precisely on the head, is that Ted’s Journey continues through everyone’s efforts in Ted’s memory and honor.
So that’s what brings us to the Henry Mullin family interview, gathered in the same den where Ted laughed and cried with friends after a dinner at Merle’s Barbecue one night and, with his family and doctor at his side, died the next. Ted radiates energy in the framed photo taken of him with his friends that last full night of his young life. His family explains that readers can still join Ted’s Journey and the battle against sarcoma, a rare cancer whose research is badly underfunded, by donating to the Ted Mullin Fund for pediatric sarcoma at the University of Chicago.