Eliana was always such an exuberant, healthy baby that it was an incredible shock to all who knew her when at less than 2 years old, what first appeared to be a runny nose, low fever, and a few bruises on her shins turned out to be Acute Lymphoblastic Leukemia. In one week she went from tearing around her gymnastics class to clinging to me, her mother, for dear life in excruciating pain. I cannot possibly put into the words what it feels like to go from thinking your daughter has a cold to seeing her that very same night receiving emergency blood and platelet transfusions and into heavy chemotherapy the following day. It is a terrifying ride...every parent's worst nightmare.
After the first 6 months of intensive therapy, Eliana was finally on lower chemo doses, what they call "maintenance", and she could lead a much more normal life. She continued to receive chemotherapy orally (we administered pills
nightly) as well as receiving chemotherapy via her in-dwelling chest catheter (an under-the-skin port), in shots to her legs, and in her spine (she had regular spinal taps and chemo injected into her spine for two more years). We were extremely lucky that there was a wonderful pediatric hematology/oncology team at Cottage Hospital so that we only had to drive as far as Santa Barbara for treatment from dedicated, top notch, caring professionals. Fortunately for us, caring people throughout the years have generously given to the cause and what used to be a 4% survival rate a few decades ago became a 90% survival rate for our daughter. It made the treatment much easier to bear knowing there was so much hope. Additionally, for lower risk patients like Ellie, physicians were and (still are) rapidly gaining the knowledge they needed to be able to tailor the treatment plan to the patient... so that she would not have to endure as dreadful side effects as she might have years before when it was more of a "one size fits all" approach.
From the bottom of my heart, I thank you for every last research dollar that may have contributed to my daughter surviving this horrible disease. I can tell you that even so, the side effects were quite horrific. With much pain in my heart, I reflect on Christmas 2005, when Ellie was swollen like a balloon from steroids- unrecognizable...bald, suffering nausea, stomach pain, constipation, a mouth full of sores and scabs, a yeast infection, weak legs, shakiness, not able to eat, suck, play, sleep, or even smile. We could hear her moaning and sobbing all day and all night during the intense parts of her treatment. We had a drug for every ailment and yet we felt completely helpless.
Today, we are thankful that she is alive and well and able to have a normal life. No more holding down our baby while she cried and forcing meds down her throat. She enjoys dance and sports now, which is a blessing after several long periods during her treatment when she couldn't or wouldn't walk for weeks at a time. I still remember when she used to tell me daily that I had "big hair" and she had "tiny hair", but that her hair was going to grow and pretty soon she would have a ponytail. I remember when she used to insist on me putting one of her blankets on her head so when she lied down to go to bed she could feel like she had long hair cascading down around her.
If people had not been so generous over the years, we would not have Eliana today. We have met way too many parents along the way who weren't so lucky, with children who have fallen prey to other forms of cancer which are not treated as successfully as ALL. On their behalf, I thank you for continuing to give to this cause where so much work is left to do.
