My name is Dana Ortiz and I have decided to pair up with Team in Training to raise money for the Leukemia & Lymphoma Society in honor of my son Dylan Rieder.  I will be running the San Diego Rock & Roll Marathon on June 3, 2018.  

Dylan was a huge support to me in my marathon training while he was still in good health and he knew I wanted to run Boston.  I was always worried about leaving him--he was like, "Mom just do it, I'll be fine."  However, being his caregiver when he became ill, meant that all my time was devoted to him.  I told him his job was to focus on him and I would take care of everything else.  During this time, I had more support from my family and friends than I could have ever imagined.  There was never a day we were alone; I have gained hundreds of new friends, sons and daughters.

At 8 years old Dylan's dream was to become a professional skateboarder.    Since he was an amazing swimmer I thought he would go to Stanford to swim and play water polo.  Ha!  Was I wrong.  We all know his dream came true.  By 15 he was traveling the world and at the age 19, turned Pro.  Even though his life ended too soon, he packed in a lifetime of rich and varied memories.

On July 25, 2014 Dylan was diagnosed with Acute Lymphoblastic Leukemia (ALL).  Our lives changed in a matter of seconds as soon as the doctor gave us the news. As a mother, I was freaked out but Dylan was so calm, asking, "What is the next step?"  He was admitted to Cedars that day and he spent three months there trying to get into remission.  We thought we were on a journey that would be pretty routine as far as ALL goes.  The plan was to do chemotherapy to get him into remission and then do a bone marrow transplant.  His sister, Makenna, was a perfect match! There was only a one in four chance that she would match.  So, check one big item off the list.  We soon found out that Dylan's fight was not going to be that "routine."

We were home one day and he started acting weird. I thought he was having a stroke.  Off to the ER we went.  As it turned out, he had experienced something called Encephalopathy, which causes brain malfunction.  Basically, he had no memory of numbers, names or time but oddly enough he could still read. Thankfully it only lasted five days, but it seemed like forever. The doctors advised us it was caused by one of the chemotherapy treatments that was being injected into the base of his spine. 

His oncologist then told us we needed to go to City of Hope to take part in a cutting-edge clinical trial involving T-Cells -- using his good cells to kill the cancer cells and to hopefully get him in to remission to get ready for his transplant.  In Dylan fashion, he remained positive and off we went to City of Hope.  He started treatment in January of 2015 but not before a trip to Hawaii and to New York, for the grand re-opening of his antique store, The Hunt.  Throughout his considerable setbacks, he never stopped enjoying life and the people he loved.

Unfortunately, the trial didn't work.  The doctors at City of Hope had another option for treatment which involved him wearing a portable pump for one month.  He hated that pump but in his typical way, he made the best of it.  The medication failed.  Next was to go to transplant without being in remission, which wasn’t ideal.  The doctors set up a schedule for chemotherapy and radiation.  It was an aggressive plan but necessary to prep his body to accept Makenna's cells.  Transplant behind him, we finally heard the word REMISSION in April.  But before he was able to go home, he developed a rare liver disorder as a side effect of the radiation.  As luck would have it, City of Hope is the only hospital that had the medication that was needed to treat it.  Having beats the odds of only a 20% chance of pulling through, he was finally on the mend. On July 3, 2015, after spending four months in the hospital Dylan got to go home to Mr. Hank Dog!  Hank was at Dylan’s side at every minute of the day and night.  Dylan kept Hank learning new tricks including eating from chopsticks and dressing him up as a super hero.

Life was finally starting to look "normal" and I finally got to go home and begin training for a marathon. But after a routine blood test in November 2015, Dylan found out he had fallen out of remission. Back to the drawing board we went.  

In January 2016, we started a new clinical trial that was similar to the first T-Cell trial he did, but this time they would be using Makenna's cells.  Makenna would do anything for her big brother, enduring the sickness she went through to give her cells.  We were told that we would know if the cells were taking because he would get extremely sick during the process.  And he did.  It was a frightening few miserable days.   Again, in April 2016 we heard the word REMISSION.

But of course, another challenge surfaced and he needed additional treatment.

On May 25, 2016, after spending three months in the hospital and one day before his 28th birthday, he got to go home.  What a party we threw him!  Life for Dylan was still not ideal but he just wanted to be home.  After numerous setbacks and side effects from many of the treatments he had endured, and while still in remission, he developed an infection on October 8th that took his life on October 12, 2016.  

During his two and a half years of fighting, Dylan still remained the kindest, warmest-hearted man.  He was always thinking of others and not himself or his suffering.  When the barista at his favorite coffee shop expressed her sympathy for what he was going through, he told her, “No, I feel bad for my mom, dealing with doctors and treatment research and caring for me…”

This past year has been full of ups and downs but with the support of many wonderful family and friends, I have been able to cope with day to day life. 

Now I am finally ready to train and run that marathon Dylan and I talked about.  

So far, my training is going well but it takes more than one person to make up a team. That’s why I’m asking you to donate to my Team in Training fundraising page for the Leukemia & Lymphoma Society!  As a team member, I am raising funds to help find cures and ensure access to treatments for blood cancer patients.  My personal goal is to raise $10,000 and qualify for the Boston Marathon.  

The Leukemia & Lymphoma Society (LLS) is committed to funding the best and most innovative research, while providing patient support and education, and tirelessly advocating on behalf of patients. Last year, LLS committed $46 million to new multi-year research grants, bringing the total LLS research investment since its inception to over $1.2 billion. This LLS research investment has played a critical roll in advancing therapies for blood cancer patients, including targeted and immunotherapies. LLS recognized the promise of research in CAR T-cell immunotherapy - the type of treatment involved in the two clinical trials that Dylan took part in during his treatment - and for the past 20 years has provided $40 million in funding for more than 15 researchers and companies around the world to develop this revolutionary approach to treatment.  That investment began to payoff in 2017 when the FDA approved two CAR T-cell immunotherapies - one for children and young adults with ALL and one for adult patients with certain types of large B-cell lymphoma.  These two treatments were part of the 18 new treatment options approved for blood cancer patients by the FDA in 2017, and LLS played a role in virtually all of these advances. 

LLS has a strong connection with City of Hope. A number of doctors from City of Hope have received LLS funding for their research over the years. In fact, Dylan's doctor, Dr. Stephen Forman, received a grant from LLS in 2015 as part of the Translational Research Program which funds new and innovative research that shows high promise of moving from laboratory discoveries to clinical application. Additionally, Dr. Steven Rosen, the Director of the Beckman Cancer Institute at City of Hope sits on the LLS National Board of Directors and chairs the LLS Medical and Scientific Affairs Committee. 

Your donations will help LLS continue to support research into revolutionary and innovative new treatment options that will one day lead us to find a cure. In the meantime, your donations will also help LLS to provide information, education, and support for patients, survivors, and their families. 

Patients need these cures and they need your support.

Please make a donation in support of my efforts with Team in Training and help get us all closer to a world without blood cancers!

Thank you!

Please don’t cry because I died! Smile because I lived! Know that I’m in a happy place! 
Know that we will meet again!