Our Story:

On January 1^st 2013 I heard the words that no parent should ever have to hear, “Your son has cancer”. In the next five minutes I learned that Ryan needed to have surgery within a few hours that included a bone marrow biopsy, a spinal tap, the start of a three and half year chemotherapy regimen with an injection into his spine, and the placement of a PICC line into his arm to administer the chemo drugs. That was Day One.

Ryan was ultimately diagnosed High Risk Pre-B ALL (Acute Lymphoblastic Leukemia). He has been exceedingly brave, but my heart breaks to put him through this grueling treatment plan without full assurance of a positive outcome.

Ryan has been exceedingly brave and over the last three years enduring over 1,722 admissions of 14 different types of chemotherapy, some of which were literally gallons of chemo. He endured 10 hospital admissions, each with an average of 4-night stays. So many trips to the ER I lost count. Two surgeries and one still to go. Three bone marrow aspirations. Three anaphylaxis allergic reactions including one that landed us in the ICU. 30 spinal taps. Nineteen blood transfusions. Chemical meningitis and a relapse scare. That is the reality.

This has been three years that we would never want to repeat, but it was filled with incredible life lessons that has brought our family closer. Ryan is currently in the maintenance phase, which consists of monthly chemo and spinal taps at the hospital as well as daily chemo pills, all the way until April of this year. He is back in school and getting stronger every day. We just pray that his current standard of care will be enough as still approximately 20% of these children relapse with much more grueling treatment plans to endure and likely much grimmer outcomes.

Although we are grateful for his treatment regimen, it seems to me that more can and should be done to improve the treatment plan. It is simply brutal, involving dozens of drugs that have not been updated in decades and can cause many life- threating side effects. We can and must do better.

So three years ago I decided to do something that was personally hard for me, to honor the strength that my son was showing in his battle with cancer. Something crazy to help fight Leukemia in a way beyond Ryan’s personal battle. Something to help advance a much needed breakthrough in cancer research. Working with Team in Training, I completed the 2013, 2014 and 2015 Chicago Triathlon and the 2013, 2014 and 2015 Blood, Sweat, and Tears century bike ride to benefit the Leukemia and Lymphoma Society.  I am thrilled that my team and I have raised over $300,000!

Since last year’s triathlon I unfortunately lost a dear friend, Curt Hecht, to cancer. On news of his diagnosis he called and asked for help to navigate his grueling and scary road ahead. My son’s journey prepared me to help. As a part of Curt treatment he ran to the absolute cutting edge of cancer treatment and entered a phase 1 clinical trial using immunotherapy. Curt tragically did not survive however, he fought one hell of a fight in the same way he always lived his life, twice as strong as the rest of us.

So with Ryan’s spirt in mind and in honor of Curt we started a new triathlon club called Twice as Bright, so we can train all year round. I am back this year for more crazy and determined to build an even bigger team of crazy people to join in the mission! We are already training and fundraising so I know 2016 is going to be nothing shy of EPIC but we need your help to make it happen.

 WHY WE DO THIS - A Few Facts About ALL:

• In the U.S., about 2,900 children under 21 are diagnosed with ALL each year, representing 35% of all types of childhood cancer. The #1 disease killer of children.
• For the most part big pharam companies are not interested in developing any treatments for this population as the size does not justify the investment. 
• Governmental support for these kids are channeled through the NIH which only 4% of their budget goes to fund all pediatric cancers. Leaving a huge need for private funding of research if we are ever going to find a cure or even a new drug for these kids. 
• The 5-year survival rates for ALL have improved significantly due to some incredible work. In 1964, the survival rate was 3% and today it is 91%. While I am definitely thankful we are not living in 1964, these numbers are not quite so encouraging if you are the one on the front line of this brutal treatment plan.
• There are about 400 children a year who are diagnosed with Ryan’s particular sub-type of leukemia, High Risk Pre-B ALL and their 5-year survival rate is 83%. The main life-threatening issues these children face are relapse (the leukemia comes back and is resistant to chemo treatment), toxicity of the chemo, and an infection they simply can’t fight because the chemo has weakened their immune system.
• If you make it through the three and half year treatment plan and the leukemia does not return for five years you are considered “cured” but actually probably more accurately called a permanent remission; however, two-thirds of those who are cured still have life threatening side effects associated with all the chemotherapy they have received.

Simply put, there is a lot of work to still be done to improve the standard of care and the outcomes for children with ALL.

The Cutting Edge:

Through our journey we have met and shared many of our deepest and most profound emotions with many families. One in particular, with their team of doctors, have motivated me to raise money again this year.

Emily Whitehead was 7 years old on April 17, 2012 when she was the first child to ever receive T cell therapy (clinical trial CTL019, formerly CART 19) where her T cells were genetically engineered with a dormant HIV virus to fight leukemia…without chemotherapy.

Emily had the same type of cancer as Ryan, ALL. By the time she went to The Children’s Hospital of Philadelphia (CHOP) and was treated by Dr. Grupp and Dr. June she had relapsed fairly late into treatment and simply ran out of options. These doctors saved her life.  First they collected her T cells, reengineering them in a lab to recognize a protein that is only found on the surface of her cancer cells. They then reintroduced the reengineered cells into her body where they could multiply, attach to, and then kill the cancerous cell. These cells remain in the body to continue to fight any new cancerous cell that might develop. All without any chemotherapy or radiation.

Today Emily remains cancer-free today and subsequently over the past two years 27 patients (22 children and 5 adults) have been treated with this T cell therapy at CHOP. Of those, 18 remain in remission today. We are also witnessing similar results in Seattle based trials. These patients had run out of options and would not be with us today if not for this ground-breaking research.

If you are interested in learning more you can watch this video

https://www.youtube.com/watch?v=h6SzI2ZfPd4&list=PLKKm7U9tyxMLeB6qiWhrjjbJ0bk0JHIyJ

Why LLS?

There are a lot of wonderful fundraising activities out there to help children diagnosed with cancer and their families.

The Leukemia and Lymphoma Society (LLS) is one of those incredible organizations. As one of the main groups that support the larger population of people impacted by blood cancer, they have helped me find a way to direct the funds that I raise to the doctors who are leading the CTL019 clinical trials that have saved many children’s lives who were considered hopeless.

Having worked in innovations most of my adult life, I feel so passionate about finding a real cure for cancer by understanding the biology and DNA as opposed to treating it by dousing these children with chemo and exposing them to radiation. This pioneering research motivates me every day to get out and swim, bike, run, and ask for your help to make a difference.

So in 2016 I want to honor Ryan and all the children that face the current standard of care by doing this year’s Chicago Triathlon on August 28^th with LLS. Their incredible Team in Training program makes both training and fundraising easier.

What Can You Do to Help?

If you are interested in helping us here are a few suggestions:

•   Join our team and do this crazy thing with us. If you are interested at all please reach out to me at traceyscheppach@yahoo.com

•   Make a donation on this site to support our efforts to cure cancer. Every dollar goes to the LLS pediatric cancer research portfolio. All to the kids and no administration fees once we clear the fundraising minimum which should be any day now! 

Together we are making a dent in the universe. Together we are truly saving lives.

Thank you for your support!

Tracey