acute lymphoblastic leukemia (ALL)
Nora was diagnosed with acute lymphoblastic leukemia (ALL) on August 20, 2018. This is the day our lives were turned upside down and forever changed. Nora was about three weeks away from her second birthday, and we were in utter shock that she would now be fighting an unfathomable battle. After all, this was Nora, our go-hard, go-fast, ray of sunshine. Never did we imagine anything could get her down. But yet, here we were.
On August 20, 2018, I noticed broken blood vessels on Nora’s shins and forearms. Knowing that petechiae are normally a sign of trauma, I felt that this was very odd since Nora had not been injured. We went about our day, taking a shopping trip for our older daughter’s upcoming first day of school with my mom. During our shopping, I could not shake the feeling that something was amiss. I called the pediatrician, and they gave me an appointment for later that afternoon. My husband, Addie, and I all took Nora to the pediatrician, and never in our wildest dreams did we expect to be told to rush Nora to the emergency room. After checking Nora thoroughly, the doctor suspected that something was seriously wrong. In hindsight, the pieces all fit together, but hindsight is always 20/20, right?
After arriving at the emergency room at Children’s Hospital Pittsburgh, we were ushered to a room in the very back quickly. The staff wasted no time in taking vitals and bloodwork from our baby. When the resident doctor and the two nurses came back into the room, we knew immediately something was gravely wrong with our daughter. The resident explained that her white blood cell count was 175,000 and that she had a form of leukemia. I can recall a sound escaping my body that was unrecognizable. Finally, I squeaked, “Are you sure?” Much to the doctor’s dismay, he had to reaffirm that this was the case.
Nora was immediately admitted, and we were moved upstairs to begin the steps in her treatment plan. Over the next several days, we hit the ground running. While going through the motions, we were still praying for the lesser of the two evils in terms of types of blood cancer diagnoses. Until you are in this position, it’s difficult to understand how you pray that your own child has a certain type of cancer . . . and frankly, it’s still a tough realization to recall. Nonetheless, Nora’s testing came back that she had ALL. Her oncology team was and continues to be one of the absolute best. They put forth a treatment plan and did not hesitate to explain the ins and outs time and time again when we needed reassurance or further explanation during the two and a half years that she endured treatment. In less than two days from diagnosis, Nora received her first round of chemotherapy.
In the days, weeks, months, and years to come, Nora would undergo countless spinal taps, bone marrow aspirates, chemotherapy treatments, EKGs, home nursing, emergency room visits, clinic visits, and hospital stays ― all parts of our family’s new “normal.” We all took this journey day by day, focusing on making our family the priority. Cancer would or will not define any of us at any time.
At one point throughout Nora’s treatment journey, we were in attendance at a Leukemia & Lymphoma Society (LLS) event. Some folks noticed that I had brought a large baggie filled with medications, syringes, bowls, spoons, etc. We had to take time away from the event and get Nora to take her medications. At that point, she was taking many pills at once at the age of 2. There are adults unable to take medications in pill form, but here we were coaxing our toddler to do so. This made quite the impression and led to a medicine bag and supply kit being created by our local LLS region. Though this example may not seem like a big deal to some, to us, it was huge. For someone to think of preparing these kits for other kiddos so they didn’t have to tote around a baggie full of medical supplies, they could be discreet and have privacy, is one less concern as a caregiver.
Nora is an amazing warrior and took the treatments as well as the side effects in stride. As we know, the exact treatment therapies that are meant to save your child’s life cause detrimental and lasting effects.
Nora finished her chemotherapy treatment in December 2020 and rang the bell at Children’s Hospital of Pittsburgh on January 14, 2021. She has quarterly appointments at the CHP Oncology Clinic for bloodwork and physicals. Our hearts are always grateful for her continued health as we continue on to close this journey. As she continues to grow, and gain confidence in activities and life, we remain humbled. Nora is an inspiration to many, and we look forward to all that the future holds for this bigger-than-life superhero.
We will continue to share Nora’s story in hopes of raising awareness not only about childhood cancer but specifically about blood cancer. Our family will be forever grateful for people like you, supporting such an amazingly supportive organization, LLS. We have been extremely blessed to have had LLS be a part of our journey from the beginning. They have afforded our family some sense of normalcy and have offered us a platform to continue to tell Nora’s story and raise awareness for blood cancer patients, especially children. LLS is integral in not only advocating for these warriors but for leading the way in terms of research and groundbreaking treatments. They are implementing policies that are not only supportive of the patients themselves but for their families as well. These children deserve so much more than the one in four statistic that families are presented with, and LLS will push forward making sure that these young fighters receive all they are deserving of and more.
Written by parent.