On Friday, January 23rd, Eleanor was to have a bone marrow extraction and a spinal tap to confirm a true diagnosis of leukemia. That morning we met with Dr. Kutney, his nurse practitioner, Carly, and a resident doctor, Jenny. They explained what they would be looking for in the bone marrow and spinal fluids and the course of treatment for each if detected in those areas- CHEMOTHERAPY for the bone marrow and RADIATION for the spinal fluids. Those words felt so incredibly heavy to hear as they spoke them so nonchalantly. LEUKEMIA, CHEMOTHERAPY, RADIATION- this can't be real.
She was prepped for surgery and although the nurses and anesthesiologist explained every detail of the procedure I couldn't help but be a bundle of nerves, to the point of shaking. Walking alongside her bed as they rolled her to surgery, I didn't see how I could let go of her, putting her into someone else's hands. I'm her Mommy. Thankfully we were able to stay in the room with her until the anesthia took effect. Although the anesthesiologist warned us how quickly it would take effect, I was in shock at how fast it actually happened and couldn't help but cry as they asked us to leave the room. Walking away from her then was one of the hardest things I have ever done. Little did I know that the days ahead would be much harder. Chris and I waited in a small waiting area just outside of where we left her, both of us bursting into tears as we closed the door, so afraid of what she was going through without us, so afraid of what they would find. Praying and crying as we anticipated the worst. After only 20 minutes or so, one of the nurses came to get us. Eleanor was turned on her side still waking up from the anesthia. Her bandages seemed much smaller than I had envisioned they would be, one at the base of her spinal cord and the other at the back of her right hip. It took her quite a while to wake up, but she did not appear to be in any pain which was a huge relief for Mommy and Daddy.
At about 4 o'clock that afternoon, Dr. Kutney, Carly, and Jenny came back to discuss the results. The spinal tap showed no leukemia cells in her spinal fluids, PRAISE GOD! This meant Eleanor would NOT need radiation. Jenny explained that the bone marrow extraction confirmed Eleanor had AML, acute myeloid leukemia. At that moment Chris and I both broke down in tears. How could our precious, perfect daughter have CANCER!?! It felt like they had given her a death sentence. I remember praying, "God, please don't take her from us". We listened as they explained what AML was and the percentage of "favorable outcomes", which was only 50%. After hearing that, much of everything else they said became quite muffled. Chris, or course, knew much more about what this all meant as he had been researching leukemia since she first displayed symptoms. He asked the doctors many questions that I honestly didn't even understand. At one point in the discussion we were asked about giving permission to be included in a research study, both of us agreeing that whatever anyone could learn from this would be a benefit to those diagnosed later, as long as it meant minimal issues for Eleanor. They also explained that IF SELECTED in this trial Eleanor could receive an additional drug that has shown more favorable outcomes for adult AML patients. We found out later that we were NOT selected, which, at the time, disappointed us.
Her treatment would include 4 rounds of intensive and aggressive chemotherapy, each round lasting roughly 28-35 days. We met with them for over 2 hours as they discussed the types of chemotherapy (Daunorubicin, Cytarabine, and Etopiside) that would be used and the OVERWHELMING list of side effects for each one. Possible side effects included hair loss, mouth sores, nausea, vomiting, rashes, damage to the lungs or liver, and even a new cancer or leukemia developing. All of this was incredibly disheartening. We began chemo the next day.