St. Judes Heroes Charity Athlete Program

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Living in a constant sea of devastation, I have witnessed innocence wounded, and come to terms with the precariousness of life. These angels living on in my heart are my reason for wanting to make a difference.

We were all devastated on April 5th, 2008 when Emily passed away at St. Judes Children's Research Hospital in Memphis, TN. For seven years Emily has been a hero to us, to her family, to her friends, to the Tampa Bay community and to many, many people all over the world - literally!

This is a very personal story for me. The very short version is that Emily Lester's Aunt Mimi, (most of us know her as Mary Ann Renfrow), has been a dear friend to us personally. She has been instrumental to the success of the St. Pete Beach Classic, Bay to Bay and Tampa Bay Youth Running. During the time our events were growing and succeeding, Emily was fighting cancer and becoming a local hero.

The longer story…
Emily was originally diagnosed as a 12 year old. Already an outstanding student and disciplined athlete, she took on Leukemia as another obstacle and challenge to overcome. For almost three years she was in and out of All Children's Hospital in St. Pete for numerous rounds of treatment and even though she could no longer participate in sports, she continued to excel in school. Her hard work paid off. She went into remission and was admitted into the International Baccalaureate program at St. Pete High. This is an amazing feat for any student but especially impressive for someone who has been fighting cancer. Emily charged into making a difference in the community as well by forming the chemo crew and raising thousands of dollars at the American Cancer Society's Relay for Life.

Unfortunately the week before Thanksgiving 2005, I received terrible news from Mary Ann, Emily had relapsed. The treatment plan this time was considerably more involved; a bone marrow transplant was her best chance for a full recovery. Emily's sisters, Catherine and Grace, were tested and Catherine was a match. Not every cancer patient is so lucky. Many times it takes months or years if ever to find a match, even with hundreds of thousands of people in the National Bone Marrow Registry. Emily's Mom, Tricia Lester, once again went into stealth research mode researching the most advanced treatment facilities for bone marrow transplants. It was decided that Emily's best chances for a successful transplant were at St. Judes Children's Research Hospital (www.stjude.org) in Memphis. St. Judes is an amazing place for any number of reasons but two are particularly impressive - the incredible amount of research and treatment options developed since founded by Danny Thomas in 1962 AND the fact that no child is ever turned away because of an inability to pay for care. Entire families are transported, given lodging and basically allowed to focus on their sick child while under the care of the incredible St. Judes staff. Any child suffering from an illness under study by St. Judes extensive research programs is eligible to be treated at St. Judes and the level of compassion by everyone there is nothing short of amazing. We all knew that Emily would have a great fight on her hands but we were confident that St. Judes was the right place to go. Everyone in the family began to prepare for many months away from their St. Pete home. Catherine would have to be in Memphis for the actual transplant but basically she and Grace would stay at home in Seminole and be cared for by friends and family.

A few days after it was decided that Emily would go to Memphis, we went to see her at All Children's. When I asked what she would like from her favorite store, Target, she said that she didn't need anything but could we get more people into the bone marrow registry because her friends around her that didn't have matches were dying. This was from a 16 year old who was in fact facing death herself! I left the room and cried and at some point made the decision that we could help get more people into the registry. We could do a Bone Marrow Registry drive at Bay to Bay scheduled for March of 2006. The timing was good, we had the best PR group in town, (The Carter Group) and most of all, we could help! Emily prepared to go to Memphis and we started recruiting people to come to the Bay to Bay Expo and join the National Bone Marrow Registry. That spring we registered just under 100 new additions into the Registry and Emily headed to St. Judes for the actual transplant. We all held our breath, prayed and waited for updates from Memphis. Extended family flew back and forth and we felt like we had been adopted into their crazy Italian clan! (Mary Ann and Tricia's maiden name is 'Previtera')

Bone marrow transplants are tough. At one point Emily told her family and friends that she had done the research and she might not go through with it. She was a very, VERY smart young woman and she knew that the chances of a cure were about 50-50. In case you aren't familiar with the process, the treatment involved super chemo to wipe out any trace of cancer taking a patient close to death and then re-introducing good, clean bone marrow from the donor. It is brutal and many patients don't survive either the chemo or the transplant. They have to spend weeks in the hospital and then several months in close proximity to the hospital. As I mentioned earlier, one of the great things about St. Judes is that they provide housing for families at one of several locations. There is the Memphis Grizzlies House and the Ronald McDonald House for short term stays and then the Target House for the longer term patients and their families. The Target House was opened with 98 family apartments in 1999 in a totally renovated former convent. The Lester's would stay at Target house from March until July of 2006.

When Emily returned to St. Pete she was in no shape to be out in public for any amount of time so she could not go back to the IB program, instead having to take remote learning courses and work on regaining her strength. Little by little, life did begin to return to normal. By the spring of 2007, Emily was attending Seminole HS and taking every AP class she could. She continued to raise money for the American Cancer Society becoming a key spokesperson for them. That spring we also held our second Bone Marrow Registry at Bay to Bay and Emily was actually able to attend the race! We had another great year with over 120 people joining the registry. Emily got a $12,000 college scholarship from Discover Card given to an outstanding student who had overcome adversity while excelling academically. She began applying to colleges and set her sights on Duke where she could major in pre-med and fulfill her dream of becoming a pediatric oncologist. Life was busy and normal at the Lester household. In the fall of 2007 she was able to attend school full time and set her sights on being valedictorian of her class. More honors followed including early admission to Duke!

Unfortunately in late January of 2008 I got another one of those calls from Mary Ann. Emily had relapsed and Mary Ann was on her way to All Children's. I will never as long as I live forget once again hearing one of the strongest women I know sob on the phone. The doctors at All Children's and at St. Judes collaborated on how to get Emily back in remission as well as what the next plan of attack would be. Emily lay in her hospital bed and talked about how a few days earlier her greatest worry had been AP Calculus. She was a very sick young lady and it was the day before her final interview for the St. Pete Times Barnes Scholarship. Would they wait until she got out of the hospital? Life seemed so cruel and personally I could not understand why God had let this happen. God, please forgive me but it was so hard. One thing I may not have mentioned is that the Lester's are devoted Catholics and we have all learned so much from the strength of their faith.

As we prepared for Bay to Bay, Emily and her family prepared for another fight. This time it was determined that she would need a non-related donor found through the National Bone Marrow Registry. The wonderful doctors and nurses at St. Judes gave the Lester's hope that they would get Emily back into remission and then be able to look for a donor. 'Hope' continued to be the one word that we heard over and over again. Soon after going to Memphis Emily got word that the St. Pete Times had awarded her the Barnes Scholarship.Cancer patient among five Barnes Scholars The day it was awarded I ran into Paul Tash, Publisher of the St. Pete Times. He was so gracious and told me that he was looking forward to the Times paying for Emily's Duke University education. Each day we waited for reports from Memphis as to Emily's progress. Even as she was undergoing yet another round of the brutal chemo treatments, she was finding time to write on her blog and study!

Back in St. Pete, Emily's extended family and friends started an incredibly effective grass roots marketing campaign to drive more people to the registry. The Carter Group ramped up their media efforts and the third Bay To Bay Bone Marrow Registry drive was featured in numerous television spots and newspaper articles. As our race weekend in mid-March grew closer Emily sometimes rallied and sometimes faltered. We prayed and worked furiously to get the word out. Her grandfather Jim Previtera literally distributed 1,000s of flyers and posters throughout the community and especially the Diocese of St. Petersburg.

Due to these efforts, the drive was a huge success with 375 new people joining the registry. Bone marrow registry drive in Emily Lester's name brings 375. We were thrilled but our joy was tempered by Emily's declining health. Her tiny body, ravaged by chemotherapy and infections, was failing her. Family flew from St. Pete and around the country to be with her and on April 5th, 2008 Emily was gone from this earth.

Emily's Obituary in the St. Pete Times

Before she died we had promised to come to Memphis after Bay to Bay to see her and discuss becoming more directly involved in the St. Judes Heroes Charity Athlete program. Her passing strengthened our resolve to honor this promise and in May we went to tour St. Judes and meet with their program staff. It was a very sad and emotional visit for us but we came away with a new appreciation for how much we could do to help support their mission. No child is ever turned away because of an inability to pay for treatment and operating costs run $1.2 Million per day! Their research team is one of the most advanced in the world and the professionalism and devotion to their mission is indescribable.

We are extremely honored to have been chosen as an official fund raising event for the St. Judes Charity Athlete Program. Please consider joining us in our efforts. Em, we know you are watching.

Sign up now to be a St. Judes Hero.

Wendy and Al Johnson