Will you join me in the fight against Childhood Cancer?

Dear Family and Friends:

Will you join me in the fight against Childhood Cancer?

I’m taking on a new challenge and would greatly appreciate your assistance in helping me to reach my goal. I will be participating in the Ironman 70.3 in Oceanside, CA on March 27, 2010. This event consists of a 1.2 mile swim in the ocean, 56 mile bike ride and 13.1 mile run. You may think I’m crazy for wanting to compete in this event, but let me take a moment to explain why.

My daughter, Evelyn Grace was born on March 19, 2009 after a healthy and uneventful pregnancy. Just three weeks later she was diagnosed with leukemia.

On April 10, 2009 after a dermatology consultation and blood test at UCLA, we received the phone call that would forever change our lives. We were told that Evelyn had an "extremely elevated WBC count and there is concern of blood malignancy." The CBC revealed a WBC count of 266,000 (86% blasts), Hg/Hct 15.7/48 and platelets 69,000. We later learned the purple lesions on her skin were in fact an extremely rare condition called leukemia cutis.

At just 22 days old, Evelyn was diagnosed with congenital infantile high risk ALL, Pre-B Cell, MLL rearrrangement 4:11 (translocation 11q23), positive CNS disease.

Evelyn was admitted to the UCLA Mattel Children's Medical Center PICU. She immediately underwent surgery to place a central line. A blood transfusion exchange was performed and two rounds of hemodialysis. She was started on chemotherapy protocol POG9407.

Evelyn achieved brief periods of remission. Those were the most glorious days. I had hope that she would be our miracle baby. I prayed that she would defy the odds.

Evelyn relapsed on July 9, 2009. Once again we had the dreadful and devastating conversation in which we were told that Evelyn would likely not survive and that her odds had further decreased. There was only one hope and that would be reinduction chemotherapy and cord blood transplant. A more intensive chemotherapy regimen was started on July 9, 2009. The reinduction would need to get her to remission long enough for her counts to recover without reoccurrence of leukemia then take her immediately to TBR (total body radiation) and cord blood stem cell transplant. She fortunately had a cord blood match which was awaiting her, frozen at UCLA Medical Center.

Evelyn could not achieve remission long enough to make it to transplant. She would end up back in the PICU battling a severe blood infection. She bounced back quickly after the appropriate IV antibiotics were administered. We returned to the pediatric oncology floor but soon after, Evelyn’s condition began to rapidly deteriorate.

The morning of August 11th, I was alone with Evelyn. When she woke, I lifted her from the crib to rock her as I did every morning. I noticed the lesion on her head. It was the same location that had appeared when she relapsed the first time. I was overtaken with emotion, alone in the hospital room I knew the disease was too aggressive, returning faster and more severe each time. My sweet and precious Evelyn could not fight any longer. A skin biopsy of that lesion confirmed a 2nd relapse on August 13, 2009.

Evelyn lost her hard fought battle with leukemia and ascended to heaven on August 16, 2009 @ 4:45 am. It is difficult to provide adequate words to express the devastation of losing her. On this journey my faith has lead me to some level of comfort that she no longer suffers, will live eternally peaceful and I will be reunited with her.

Congenital leukemia occurs at the rate of 1 per 5 million births. When I learned how rare her condition was, I thought WHY?! It was and is truly incomprehensible. Sadly, infants have a much poorer prognosis than the general pediatric population. Approximately 13,000 children are diagnosed with cancer each year, an estimated 3,500 are diagnosed with leukemia. Cancer is the most common disease related cause of death for ages one to 20.

I made a promise to my daughter that I will challenge myself by participating in running, cycling and triathlon events in an effort to increase awareness, raise money for pediatric cancer research and to help other children and families affected by pediatric cancer. I will continue to fight for Evelyn and countless other children.

I have started the Evelyn Grace Foundation in honor and memory of my daughter Evelyn. A non-profit 501(c)3, tax-exempt, charitable organization. You can find us at evelyngracefoundation.org or click on the logo on the blog home page.

I am specifically interested in assisting to raise funds for a research- Genome Project at UCLA’s Nelson Lab and the Division of Pediatric Hematology/Oncology at Mattel Children’s Hospital UCLA.

UCLA’s Nelson Labs plans to sequence all genes in two of Evelyn’s bone marrow samples and also sequence her normal genomic DNA in order to completely characterize all mutations that occurred in the generation of her leukemia. This will be the initiation of a larger project to comprehensively understand this form of cancer and delineate the cellular components that need to be mutated to lead to the cancer. The identification of the mutated genes will ultimately reveal the mechanism resulting in infant leukemia and lead to new treatment strategies.

It will cost $60,000 to sequence each patient’s DNA, and the more that can be done, the greater the impact this study will have. For questions regarding this research project or to make a corporate sponsored tax deductible donation directly to UCLA please contact Erica Edwards, Associate Director of Development at Mattel Children’s Hospital UCLA at (310) 267-1836 or eedwards@support.ucla.edu.

I hope that you join me today in supporting my cause. I am comforted by the chance to make some sense of the senseless suffering Evelyn endured as a result of her leukemia. Your donation will help support families affected by childhood cancer and to help fund research to shed light on the mystery of infant leukemia, advance treatment protocols and increase the odds of survival.

Donations to Evelyn Grace Foundation are tax deductible.

Tax ID 27-1648855

You can donate by sending a check to:

C/O Evelyn Grace Foundation

PO Box 463

Seal Beach, CA 90740-0463

562-296-5347

Hopefully, one day, researchers can find a cure for cancer so that no one else will have to suffer or experience the devastation of losing a loved one to this horrible disease.

With Love and Appreciation,

Bobbie Doyle