September 9, 2014, my husband and I welcomed our beautiful baby girl, Esme Elizabeth Noelle into the world. After a healthy pregnancy we had no reason to anticipate any issues, but within minutes of birth that changed. When AJ and her doctor returned to my room without her my heart sank. I remember hearing "elevated liver enzymes," "trouble breathing," and "an enlarged liver, spleen and kidneys." I saw her one last time before she was transferred to Cohen's Children's Medical Center. Now in an incubator, she was receiving C-PAP and hooked up to tubes. Her color had turned green and her stomach was distended. AJ went with her, and I joined them the next day after being discharged.
As unexpected as Esme's initial difficulties were was the fact that they seemed to clear up on their own. After a few weeks of testing in the NICU, her labs steadily improved and her strength increased. She was nursing beautifully, gaining weight and breathing on her own. A diagnosis was never reached. Doctors concluded a virus most likely worked its way through her system. To be sure it was only a virus, we had a number of follow up visits with various specialists over the course of the next few months, and she sailed through them all.
The next seven months Esme continued to grow healthy and strong, and she developed a deep bond with her big brothers Julius and Xavier who just lit up her world. I wish I had documented every second of it but I took for granted that things were as they should be with my little family.
By June things would once again take a turn for the worse. What initially seemed like a cold, then pneumonia, then a virus would have us at the pediatrician's office four times in one week. There was first a loss of appetite, then vomiting, then fevers that reached 105 degrees. The fourth visit landed us in the e.r. for IV fluids and a complete blood workup. We were transferred again to Cohen's due to lab results that provided only more questions than answers. Esme spent the next two weeks in the PICU fighting for her life as her team worked tirelessly to diagnose her. June 25th we got our answer - Pure Erythroid Acute Myeloid Leukemia - an extremely rare subset of AML, typically found in older adults. They were concerned everything that happened at birth was somehow related, making her cancer more difficult to treat. There was also great concern about whether her liver, which had been compromised at birth and again in the PICU, could even withstand the intense chemotherapy needed to first achieve remission and then again to prepare for a bone marrow transplant. She also needed additional shots of chemo directly into her spine because the cancer had spread to her spinal fluid. We were told she had a 30-40% shot if her liver held up. Those are not the odds you want to hear, but it was a fighting chance and we were determined to give it all we had.
Our lives underwent a major adjustment as Esme was transferred from intensive care to the oncology unit and I moved into the hospital with her. AJ spent his time divided with Esme at the hospital and with our young boys at home. The hospital's policy didn't allow the boys to visit their sister due to the compromised state of her immunity and the other children being treated. It was hard for them, but we would put the phone to her ear so they could talk to her, and eventually as her strength improved we began to face time. It was incredible to watch not only her face light up but that her heart rate (which increased when she was in distress) would come down significantly at the sound or sight of them.
While most children will receive chemtherapy and be discharged while their blood counts recover, the strength of Ezzie's medication and the greater risk of infection and complications with AML meant we could not. I cannot say enough about the incredible nurses and entire support staff that cared for my baby girl and me. They sustained our spirits while we spent week after week living in a tiny hospital room on isolation. I was able to convince myself beyond any doubt that Esme was going to beat this monster. I cherish the time I had as her constant companion, nursing her and sleeping most every night with her in my arms, nestled in the foldout chair that was next to her crib.
My baby girl, my little old soul was so loving and inspiring, and I continually gathered strength from her strength. Once again Esme had defied the odds and achieved remission after only one round of chemotherapy with the leukemia presenting at 5%. We also found out her brother was her perfect match for transplant. Her second round began immediately but it did little to further the goal of reaching 0% before proceeding with transplant. Esme "wasn't having a typical AML experience" because she exhibited quite a bit of strength, without any infection and without presenting even the most common side effects of treatment. Therefore she was discharged for a few days before her next bone marrow aspirate and third round. We went home for the first time in eleven weeks and relished every second of the five days all together again.
We then made the extremely difficult decision to transfer her to Morgan Stanley Children's Hospital for transplant to take advantage of their Precision in Pediatric Sequencing program. It provides genetic analysis of the cancerous cells, and we were hopeful this would be beneficial throughout and after the transplant process.
We had another brief period at home preparing her and Julius for transplant. During that time we were devastated to learn that she relapsed. We began a fourth round of chemo which was extremely difficult on her and took a heavy toll. After seven more weeks of fighting and blood counts that wouldn't rise, a bone marrow aspirate revealed the cancer was raging through her little body. The genetic testing had found a gene linked to AML. A clinical trial was beginning for adults on a promising treatment, but Ezzie was just a baby. A "case of compassion" would need to be made to the pharmaceutical company, but time was not on our side. We learned all of this on a Monday, by Thursday, after getting her pain under control, we took her home on hospice. Sunday she was gone. Esme was sweetness and strength, grace and love, and she exuded a calmness and a knowingness you would imagine one may only achieve at the end of a long life. Our beautiful baby lived 3 days shy of 15 months. I am left to only imagine the little girl and then the woman she would have been. But I know the beautiful soul she is, and I know all the gifts she gave to those fortunate to have crossed her path while she was here on this side of heaven.
i carry your heart with me (i carry it inmy heart) i am never without it(anywherei go you go, my dear; and whatever is done by only me is your doing, my darling) -E.E.Cummings