My husband Brian Doyle and I were elated with the joyful news on July 16, 2008 – my birthday – when we learned I was pregnant with our first child.
I went on to have an uncomplicated pregnancy and Evelyn Grace Doyle was born on May 19, 2009. Evelyn’s arrival was supposed to be the best day of our life, sadly it turned out to be the most frightening and life-altering experience we have ever faced.
We knew something was wrong but we weren’t sure what was happening as Evelyn was taken away to the NICU for close monitoring.
Evelyn was born with purple lesions all over her body, the appearance of bruises. She was evaluated and treated in the NICU for one week. Her condition was a mystery but she appeared to be thriving despite the mysterious lesions.
Brian and I took her to Mattel Children’s Hospital UCLA to see a pediatric dermatologist. April 10, 2009, the day our life was irrevocably changed forever. This day we learned that Evelyn had congenital infant acute lymphoblastic leukemia. This is a rare form of childhood cancer, it is extremely aggressive and there are few treatment options with very low survival rates. We were told that we had to return to Mattel Children’s Hospital immediately as Evelyn was at risk for a stroke or respiratory arrest.
How do you describe a day when you are told that your newborn baby will likely die? That her chances of survival are 20 percent – now we know they were being generous with that number so we wouldn’t lose hope.
We were given an option of letting her go, to not treat at all because the treatment protocol was nearly as devastating as the diagnosis itself. How does a parent process the enormous amount of overwhelming and crippling information you receive in such a short time? I remember feeling like I wanted to die, truly I wanted to take her place.
You go into survival mode. You don’t eat, sleep, drink, literally the medical staff frequently remind you to do these things, warning you that you must be strong for your child. We were told that day, “You are in for the marathon of your life, you have to be strong because she needs you.” During her first week in the PICU, there were many times I feared she would not make it. I prayed. I stayed with her every moment.
I took pictures and video of her as close to her face as I could for fear I would not see her again, terrified I would not remember every detail of her beautiful little face. Evelyn made it out of the PICU and onto the pediatric oncology unit where we would spend approximately the next five months of her life.
We stayed with her at the hospital- rotating to make sure she was never alone.
We were told that the chemotherapy needed to kill the leukemia cells was such a high dose that an adult would not be able to tolerate the same amount as their organs would fail; however because Evelyn’s liver and kidney’s were so young and strong she would be able to manage the high doses for awhile. It is truly indescribable to watch your child suffer through the side effects of chemotherapy.
Evelyn achieved brief periods of remission and those were some of the happiest days of our lives. We held on to hope that she would somehow defy the odds, that she would be our miracle baby. Evelyn relapsed on July 9, 2009 and began reinduction chemotherapy, an even stronger more intense chemotherapy regimen. Her little body was beginning to show signs that she couldn’t handle more chemotherapy.
Fortunately, she finished the next round of chemotherapy but then our world crumbled once again when she relapsed even faster this time and her final relapse was confirmed on August 13, 2009. Evelyn left this world and went on to play with the angels on August 16, 2009. She changed the lives of so many, reminding us all that everyday is a gift and to live every moment to it’s fullest. We love and miss her more than words can ever express.
Though Evelyn’s battle with leukemia ended last year – we will fight on in her honor until the day every child is guaranteed a cure. It’s one of the many things we learned from Evelyn. Our experience in the trenches fighting along side Evelyn showed us that many forms of pediatric cancer are incurable, underfunded and too many children do not survive.
Come join the Evelyn Grace Foundation for an afternoon in Seal Beach at the Main Street Wine Cellar for a variety of delicious wines and food. The event will take place on Sunday, July 25th from 3pm to 6pm. Tickets can be purchased by mail or online at www.EvelynGraceFound
The event will support local businesses and local talent. There will be live acoustic music provided by local musician – Lauren Coleman, a silent auction, and a drawing for unique gifts and services provided by local businesses.
The purpose of this event is to raise funds for infant leukemia research and funding towards Evelyn Grace Foundation programs. Details regarding EGF programs can be found at http://www.evelyngracefoundation.org/index.php/programs/.
Most people do not realize that infant leukemia has a very poor prognosis and many of these children do not survive. It is our goal through research that infant leukemia survival rates will mirror the 80% survival rate for other types of leukemia found in older children and adults.
There is promising research which sequences genes in leukemia cells to identify molecules to target therapy. It is our hope that this research @ UCLA Nelson Lab will bring scientist sone step closer to a cure for infant leukemia.
It is our goal to help get researchers the funding they need to advance these studies.
Through The Evelyn Grace Foundation we facilitate grassroots fundraising for pediatric cancer research and draw attention to the challenges these brave children and their families face every day in treatment. We are passionately focused on increasing awareness of infant leukemia and accelerating research towards a cure.
Evelyn Grace Foundation can be found on the World Wide Web at www.EvelynGraceFoundation.org. Purchase tickets for “Team Evelyn Uncorked” and find complete event details at http://www.evelyngracefoundation.org/index.php/news_events/upcoming_events.