Ask John Carroll alumnus and former Blue Streak soccer player Jonathan Agin what his journey has been like since his daughter was diagnosed with pediatric brain cancer, and he will answer transformative.

“You never think something like this will ever happen to your child,” explained Agin, now a lawyer currently running his own firm with a partner. “I view things a lot differently now in terms of what I value as important, what I get involved in, things that upset me on a daily basis, and what I try to focus on. Everything has changed.”

Jon was a three-year varsity player for the Blue Streaks from 1991-1993 who had his career nearly derailed when he broke his foot in the summer of 1993 (he did manage to come back and appear in three games in that senior season). He was a member of three Ohio Athletic Conference championship teams, including the memorable 1992 campaign in which he started for the first outright regular season conference championship team under then first-year head coach Ali Kazemaini.

Originally from Beachwood, Ohio, where he graduated from Beachwood High School in 1989, Agin received his Bachelor's Degree in Communications and a minor in History in 1994.

After spending two years as an account executive and marketing representative for a Fortune 500 company, he then attended Case Western Reserve School of Law where he received a Juris Doctor. While at Case Western Reserve School of Law, Agin was an Associate on the Case Western Reserve Law Review and later served as a Contributing Editor.

Since receiving his degree from Case, Agin has been a trial attorney in Washington, DC.

It was there he met his wife, Neely, whom he married in 1999. It was there where they decided to raise a family as two working attorneys.

It was there that the dream of raising that family would forever changed.

When Agin's daughter, Alexis, developed an “inverted eye,” a brain tumor was the furthest thing from any family members' thoughts. However, in April of 2008 after a visit to the doctor to check up on the symptom, Alexis, then two, was diagnosed with a brain tumor in her brain stem called Diffuse Intrinsic Pontine Glioma (DIPG). This type of tumor is inoperable with only 1% of children who are diagnosed surviving for five years or more. Alexis was given 6-9 months to live. She battled for 33 months.

Alexis received the standard treatment of radiation and for a short time participated in a clinical trial with a steroid and an experimental chemotherapy agent. During this time, Agin praised his daughter as being tough as nails and being one of the strongest people you could ever imagine.

“The incredible part about Alexis was how she just rolled with everything she was thrown into,” said Agin. “We tried to normalize things as much as possible like going to the hospital so often. It became her life and really all she knew but she handled everything with such amazing grace at such a young age.”

In January, just two weeks before her fifth birthday, Alexis lost her battle to cancer. However, her family and friends continue to fight on in honor of her powerful memory and legacy in the hopes that one day somebody will find a cure or a better treatment.

Ignited by a fire that has been inspired by Alexis, Jon and wife Neely have become active advocates within the world of pediatric brain cancer. During Alexis' treatments, Jon was extremely discouraged by the lack of funding and awareness for pediatric research compared to adult cancers.

As a result, Jon and Neely have created a fundraiser called Race Against the Odds that benefits The Cure Starts Now (CSN), a chapter in Washington D.C that they help run. The CSN organizations sole purpose is to raise money for pediatric/childhood cancer through fundraising and raising awareness.

“A lot of people believe the common misconception that pediatric cancers have a high cure rate, but the reality is that 1 out of 3 kids lose their fight to their diagnosis,” he explained. “Alexis was simply given no hope. Our chapter highlights awareness for children who are suffering from pediatric brain cancer. By having people be more aware it allows them to understand the necessity for fundraising to find cures for these diseases. I am proud to say that our chapter has raised over $250,000 for pediatric brain cancer research.”

The Agin family's Race Against the Odds 5k has become the leading fundraising and awareness event for the CSN D.C chapter and has inspired four other CSN Chapters across the country to implement the same type of event locally. Originally, the idea of the 5k event was to do something small in the hopes to raise some awareness and funds. The first year of the event there were around 500-600 runners and about $60,000 was raised.

“Race Against the Odds started as something small because I had a lot of contacts within the running community, but with each year the event continues to grow. We have a great race director and fundraising sponsor and my family and I feel truly lucky and blessed to work with people who have stood by us to help with this cause that is so close to our heart,” praise Agin.

On Sunday, November 6th, the race marked its third year, with a fundraising goal of $100,000 (they hit $85,000).  In addition to the 5k race, a pre-race dinner was added this year to celebrate the brave and courageous life of Alexis. Attendees were able to enjoy a cocktail hour with a live silent auction before the dinner while kids enjoyed some of Alexis' favorite movies, activities, and foods.

In addition, the Agins became involved with Caring Bridge. The non-profit has two parallel web sites that help family connect with each other when “health matters most”. The one website provides families with opportunities to create free and personal websites that help them stay connected with others during a challenging time. The second website is the Agin's personal Team Alexis page.

“Our Caring Bridge page was set up by my wife and a few close friends,” explained Agin. “It was a great way to communicate with others on how Alexis was doing, to raise awareness, and funds. Eventually, the blog tab became a way to express myself and vent on how I was feeling.”

To say that the journey undertaken by Jon, Neely, and their three year old son Gabriel (whom Neely found she was pregnant with two weeks after Alexis' diagnosis) has been transformative is an understatement. The family has been pushed into a surreal world and has been offered an outlook on life that fuels there day to day thinking and actions.

“The world you live in and what you care about are certainly all a matter of personal perspective,” reflects Agin. “We miss Alexis dearly and that is something that will never go away, but we try and take it one day at a time and live life to the fullest.”

Today, Agin challenges students to learn as much as possible, get involved, and take initiative.

“Your generation is the one who will bring the treatments and the cures and that will create and pass the legislation,” he stressed. “You're the ones who will find the cure and make the change. People really never get involved unless something affects them directly. I hope my story will touch at least one person to continue to keep Alexis' memory and legacy alive.”

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For more information on the organizations mentioned in the story above, click on the following links

* http://www.caringbridge.org/visit/teamalexis
* http://www.caringbridge.org/
* http://www.thecurestartsnow.org/