About Ryan
"My hope remains intact for me, and for others. Every life must breach the boundaries of sheer ease. There’s a project among projects ahead of you. That’s not irregular. That’s normal. Do what you can. And always, believe."
- Ryan James Waldheger, 2007
Contents:
Initial Treatment for Leukemia
Ryan’s First Recurrence of Leukemia
A Second Recurrence of Leukemia
Ryan’s Third Recurrence of Leukemia
Ryan’s Private Battle Became a Public One
Ryan’s Life:
Ryan Waldheger grew up in Westlake, Ohio with his younger sister Tessa, mother Pat, and father Ron. He loved his family, relatives, friends, sports, music, boating and fishing, and later politics. His teenage years were great as he enjoyed school and a large group of friends.
When Ryan was 17 years old and a junior in high school he participated in the Close Up Foundation’s weeklong civic education program in Washington, D.C. He called home several times to say the experience was amazing but that he really did not feel well. He returned to Westlake complaining of a headache, enlarged lymph nodes, and shortness of breath. Ryan was seen by his physician immediately and blood tests were begun to determine the cause of his illness. Family and friends hoped for the best but were concerned as mono, strep, and other possible explanations were ruled out. A few days later a bone marrow biopsy showed that Ryan had leukemia, a form of blood cancer. His physician made arrangements to have him treated at University Hospitals Ireland Cancer Center in nearby Cleveland.
Initial Treatment for Leukemia
On March 15, 1996, Ryan began his journey at University Hospitals (UH). His leukemia was identified as Acute Lymphocytic Leukemia, also known as ALL. He was the youngest cancer patient in the Ireland Cancer Center at the time. Ryan’s family members were with him day and night to help him evaluate the treatment options that were offered, keep him company, and keep his spirits up.
Ryan was enrolled in a clinical trial, ECOG 2993, a treatment program that was expected to include an allogenic stem cell transplant. After multiple cycles of chemotherapy, Ryan and his family decided to pursue a different course of treatment. He withdrew from the adult protocol and received permission to continue his chemotherapy treatment at University Hospitals Rainbow Babies and Children Hospital. Care was provided by a pediatric oncology team, following a protocol, CCG 1882, designed for children and adolescents. Treatment was done on an out-patient basis.
When Ryan returned to Westlake High School in the fall of 1996, it was time to apply to college. In his college application essay “My New Perspective”, Ryan described how:
One year ago I was ignorantly coasting through my junior year of high school.
Days arrived and sailed by with little meaning for me. This whole adolescent stage
in my life seemed like a stepping stone in the adult world which awaited me.
But following his cancer diagnosis each day had meaning, and Ryan wrote that “in the face of great adversity we learn the most valuable lessons of life.”
With the help of his guidance counselor and teachers, Ryan graduated on time with his senior class in June, 1997. He began his studies at The College of Wooster in September. Once a month he drove 50 miles back and forth to University Hospitals for out-patient maintenance chemotherapy treatment. In September, 1999, having completed chemotherapy, Ryan transferred to Miami University in Oxford, Ohio. In his Miami transfer application Ryan quoted Richard Feynman, author of The Meaning of it All, as stating, “that to keep trying new solutions is the way to do everything.” At Miami Ryan’s love of sports merged with a new interest in journalism and he became sports editor of the school newspaper, The High Street Journal. He graduated in June, 2001, with a Bachelor of Arts degree, honors distinction award.
He began work as a sports writer for The Chronicle, a daily newspaper published in Lorain, Ohio. Sports writing was a career he would continue on a part-time basis for six years.
Ryan entered law school at Case Western University in Cleveland in August, 2002. Unfortunately Ryan’s law school education was interrupted in November, 2002, when his leukemia recurred.
Ryan’s First Recurrence of Leukemia
Six years after his initial treatment for ALL, Ryan faced this life-threatening disease again. He returned to University Hospital, this time as an adult patient in the Ireland Cancer Center. Again, Ryan was fortunate to achieve remission and in January, 2003, he received an allogenic matched stem cell transplant from his sister Tessa. Tessa was a sophomore musical theatre major at The University of Michigan, only 2 ½ hours away and by Ryan’s side whenever he needed her.
A month after the successful transplant, Ryan returned home and resumed his interest in sports journalism. He wrote feature and game stories and increasingly focused on soccer, especially the Cleveland Force Major Indoor Soccer League (MISL) team. In 2003 he was hired by the MISL as their sports information manager, later director. The MISL was the top US professional indoor soccer league from 2001-2008. Although the league was headquartered in Westport, Connecticut, Ryan worked from home and was responsible for Web content on the league’s Website, the former MISL.net.
September 25, 2004, Ryan married Becca Rocco, his childhood sweetheart from Westlake High School and later Miami University, on what Ryan described as “the happiest day of my life.”
A Second Recurrence of Leukemia
In November, 2004, Ryan’s leukemia returned for the second time. Again, he responded well to chemotherapy at Ireland Cancer Center and received a second allogenic stem cell mini-transplant from his sister Tessa in January, 2005. A short time later he returned to work and married life with Becca in Westlake.
Ryan’s Third Recurrence of Leukemia
In July, 2005, Ryan’s leukemia returned for the third time, this time in his central nervous system. This was a serious setback and he considered whether if given the choice, he should change course and go to another hospital for care. While the Ireland Cancer Center medical team explored treatment options Ryan made up his mind. He wrote to his oncologist:
This has been my team for 9 ½ years and this is my home town. The [UH] team
knows me and I know them. If I am to face dangerous situations, I prefer to do so here with you as my doctor and this team of nurses, PAs [Physician Assistants], and doctors, and my family close at hand. We have all been through a lot together and I would like to continue together….As I tell you frequently, I
believe I am the most fortunate patient on the floor.
Ryan again was fortunate that he achieved remission and received an innovative matched umbilical cord blood stem cell transplant at Ireland Cancer Center in September. He was very grateful to be home for the holidays that year.
Ryan’s Private Battle Became a Public One
In the spring of 2006, Ryan began telling his story. He traveled to Washington, D.C., with a distinguished medical team from The Ireland Cancer Center, The Cleveland Clinic, and The National Center for Regenerative Medicine to lobby on behalf of adult (non-embryonic) stem cell research funding for Northern Ohio. He constantly offered to be a resource at University Hospitals and was happy to be part of the hospital’s “The Vision to Cure: Winning the War on Cancer" video that described plans for a new free-standing cancer hospital. He felt fortunate to be given the opportunity to tell his story to his fellow church members at Dover Congregational Church one Sunday. He began plans for a book about cancer. The title Ryan chose was A Battle or a Blessing. In the prologue “Question the Answers”, he went back and forth about how he battled, and where he stood in the battle:
So how do we battle – a word I generally detest – start by being brave. If others get a sense of that bravery, maybe they’ll stop prodding you to reassure them that you’re okay, and a much-needed sense of “normalcy” can return, at least in one respect.
The key to the fight for me, however, is one simple philosophy that I’ve used with doctors, family, friends, and even with other patients.
We are all going to face something at some point in our lives. There’s no reason to feel bad for me. Try to understand me but don’t feel bad for me. We all go through things either personally or with loved ones…
Where do we stand in the battle? That’s something that drives me both up and down every day. More than 10 years into my cancer experience and my emotions have not tired of riding the roller coaster that is an indirect product of my experience with disease.
Privately, Ryan also began to develop his vision of The Ryan Waldheger Research Memorial.
A Fourth Recurrence of Leukemia
In September, 2006, Ryan’s leukemia returned for the fourth time. He responded well to a chemotherapy program that included four treatment cycles with the drug clolar (clofarabine). Clofarabine had only recently been approved for use in treating ALL in adults. Ryan was approved for a double umbilical cord blood stem cell transplant. Ryan’s fourth transplant took place February 16, 2007. Ryan was hopeful that this time his leukemia would be cured for good. He looked forward to Opening Day at Jacobs Field.
Although engraftment appeared to be successful, serious complications developed in several organs. He suffered from multiple infections and graft-versus-host disease in his liver. On April 28, 2007, at the age of 28, Ryan passed away. He was surrounded in love and respect by an extended Team Waldheger that included Becca, Tessa, Pat, Ron, and many good friends and family members.
Ryan’s Legacy
As 11 years went by and Ryan battled leukemia five times, his circle of friends and family grew rather than shrank. He included his grandmother, aunts, uncles, and cousins in his life and they shared the many highs as well as the lows. His best friends in high school and college remained best friends 11 years later. His team of trusted medical advisers grew as Ryan retained close contact with both pediatric and adult oncologists, physician assistants, transplant coordinators, nurses, specialists, and many other providers of care at UH. He married Becca Rocco, whose parents Ralph and Nancy and brothers Adam and Michael moved into Ryan’s inner circle. His father married Dr. Priscilla Heimann who along with children Allie and Ray moved into that circle too. Becca was becoming active as a girls soccer coach in the Westlake area and those families, too, were part of the circle. Day and night, by phone and by e-mail, Ryan was in contact with fellow sports journalists, team owners, managers, athletic directors and players around the country who were in his circle of friends.
For Ryan and all of these people and more who are inspired by him, The Ryan Waldheger Research Memorial Foundation was formed.
Click here for a link to Ryan's guestbook from Cleveland.com