I have decided to leave this blog for Evelyn. A place to visit her, remember her and love her. I will post from time to time if there is an event related to her foundation, a fundraiser or an anniversary. Upon completion of the Evelyn Grace Doyle Foundation there will be a link on this site to visit the new website.
For any visitors who may not be aware of Evelyn's journey, I have written this entry to summarize her incredible life and her courageous battle against congenital infantile leukemia.
She was born with what appeared to be raised, violaceous lesions scattered over her entire body. They looked like bruises. She was quickly taken to the NICU for close monitoring and numerous diagnostic tests were completed over the next five days. My recovery room experience alone with no baby and those five days she was in NICU, awaiting test result after test result were agonizing, however in retrospect nothing compared to what we were about to face. Evelyn's WBC count was normal each time it was tested and upon discharge. The neonatologists were baffled. She was diagnosed with benign hemangiomas and we were discharged home on March 24th.
Evelyn appeared to be thriving. She was gaining weight and appeared to be a happy, healthy newborn with the exception of the mysterious lesions on her skin. We scheduled a dermatology consult at UCLA for April 10, 2009 regarding the skin lesions. The dermatologist requested a CBC after he completed her clinical evaluation in order to establish base line blood work. Several hours after our appointment 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). The skin lesions were in fact leukemia- known as leukemia cutis.
April 11, 2009-(22 days old) Evelyn was diagnosed with congenital infantile high risk ALL, Pre-B Cell, MLL rearrrangement 4:11 (translocation 11q23), monosomy 17, + 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. The first night in the PICU was the longest night of our lives. We were blessed with a kind, compassionate, empathetic pediatric oncologist who was on call that weekend. Dr. Federman walked us through the drastic events that were taking place. He spent a great deal of time with us explaining the horror of her diagnosis, the extreme rare nature of her illness, and the fact that she was congenital (born with the leukemia), what she was up against, the chemotherapy she would face and the most painful of all, conversations regarding her ultimate prognosis.
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, fearful 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.
Evelyn's amazing spirit began to show at such a young age. I think she was an old soul. She was extraordinarily alert for an infant. She seemed to know that she was fighting for her life and she so desperately wanted to stay with us. Evelyn would ultimately endure multiple rounds of chemotherapy. She 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, that God would keep her here with us.
Sadly, Evelyn relapsed on July 9, 2009, known as a primary induction failure. Once again we had the dreadful, helpless, devastating conversation yet 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. 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 straight to TBR and cord blood stem cell transplant. She in fact 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 septicemia from enterobacter cloacae. She bounced back quickly after the appropriate IV antibiotics were administered. We returned to the pediatric oncology floor but soon after, Evelyn became febrile and her vital signs inconsistent. She rapidly deteriorated the second week of August 2009. The morning of August 11th, I was alone with Evelyn. When she woke I pulled her from the crib to rock her as I did every morning. I noticed the lesion on her head. It was the same location it had appeared when she relapsed the first time. I knew that was it. As her mother I knew she could not handle any more of the painful side effects, and the invasive procedures. She was giving up because the leukemia was too aggressive. Each time it returned faster and more aggressive. I fell apart, alone with her, I held her tight, I cried and I prayed. I later called in one of my favorite nurses who was like a mother to me and the selfless and kind Dr. Alan. We all knew……there were no words, we just hugged. A skin biopsy of that lesion confirmed a 2nd relapse on August 13, 2009.
I am re-living it again as I type this story and it hurts so deeply. Tears flood my eyes again. No parent should ever have to see their child suffer or worse hold them as they slip away. I held on to hope for 150 days. I prayed for a miracle but I handed her over to God somewhere in the course of that 150 days because it became too much for me to manage. It was too big. I knew I could not navigate the feelings of hurt & helplessness on my own. I relied on my faith more than I have at any other time in my life. I knew losing Evelyn could either destroy me, in which I could become an angry & resentful person or I could hand it over to God, hoping for guidance and renewed strength. My faith kept me from being swallowed by despair. It does not make it hurt any less though. We had Evelyn for 150 days. I loved her. I enjoyed every moment with her. I was her advocate, her nurse, her defender, her protector & her mother.
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 truly incomprehensible, it still is; however, I have come to realize that she had a very distinct purpose and that I have been blessed by her all too brief time in my life.
Evelyn ascended to heaven, no more pain, on August 16, 2009 @ 4:45 am. Brian and I held her non-stop, surrounded by family for 72 hours, not sleeping, refusing to leave the room, fearful she would depart if we left her side. I had her bed switched out to a regular size hospital bed so Brian and I could lay with her. I was in bed with her, holding her right hand and embracing her body as tightly as I could. I told her over and over it was okay to let go, but she waited....she waited for a calmness and silence to descend upon her room. I drifted off to sleep for a moment and it was that very moment that she slipped away. Quietly, beautifully, in her own special little way. Part of me went with her in that instant. I gave her a piece of my heart and it is no longer mine, she has it in her keeping. Heaven feels so far away and the future long before I see her again. I will live my life keeping her memory alive until I get to be with her again. I rejoice in that day.
