Our Little Hazenut's Journey
to her Stage 3, High-Risk Neuroblastoma Diagnosis
This all started on April 17th, 2013. It was a Wednesday morning when Hazel was playing with me and her sister in the living room. Out of the blue, she began crying in pain, telling me that she had "Owies". When I would ask her to show me where it hurt, she could not really describe it. One moment she would say her belly, then her diaper, then her back. Many times she would just say, "I don't know". This lasted throughout most of the afternoon, with breaks of normalcy between cries. I thought maybe she had trapped gas, or was getting that nasty stomach flu that was going around. She had no other symptoms, so I decided to just keep a watchful eye, and see if there were any changes. That evening, it seemed to go away. She cried a few times in the middle of the night, but that is not so unusual for a 2-year-old. The next day, Thursday, she continued to complain of "Owies", but did not seem to cry as much. She also appeared a little more tired and lethargic, but I assumed it was because she did not sleep well the night before. I did notice a change, however, in her eating behavior. She is normally quite a ravenous child, and she only finished half of her breakfast, barely touched her lunch, and flat out refused her dinner. She would not even accept treats, except for two little M&M's. After dinner, she fell asleep on the couch and spiked a fever. That's when I knew something was wrong. I even remember saying to Aaron, "My Mommy instincts are going crazy...". Looking back, I truly believe God was moving within me, to get us to where we needed to go. We decided to let her sleep and see how she was in the morning. When she woke up, she still had a fever, did not want to eat anything and was extremely lethargic. I gave her some Tylenol, and the instant it went down, it came right back up. That is when I called the Pediatrician.
Once in the Dr.'s office, the Pediatrician agreed with my assessment, that this was not a normal flu or sickness. As Hazel lied there so lethargically, the Dr. observed terrible dehydration, an increased heart rate, and a tender and enlarged abdomen. She believed it may have been something with the appendix and/or liver and wanted us to go over to the ER right away. At the ER in Simi Valley, Hazel received IV fluids, and they did blood work and an Ultrasound. When the radiologist and nurse-practionioner discussed the results, they informed us that there was a solid mass, the size of a lime, growing inside her abdomen, but could not tell us anything else about it. They called Children's Hospital, reserved our space and prepared us for transport. With all of the waiting, we were there for about 4 hours.
At this point, Hazel's fever was finally down and was much more hydrated, so the ambulance ride was great! She was constantly singing songs, waving to Daddy (who was following behind us in the car), and talking to the EMT's, who she referred to as Doctors :) Once in the ER at Children's Hospital, it was another waiting game. We arrived sometime around 7pm, which is when we met several nurses and doctors. They told us they were going to review the scans to determine if they agree with the results or if they should run their own Ultrasound as well. More blood was drawn, and more IV fluids were given. Hours later, the Doctors came in to inform us that they agreed with the results: There is a mass inside her abdomen and there are two things they are most concerned about; a Wilm's tumor, or a neuroblastoma. They said we would be admitted upstairs to the oncology unit for more tests, specifically a CT scan. This was almost 1:00 in the morning.
Saturday we saw many more hours of waiting until we finally got to take Hazel for her CT scan around lunch time. She actually enjoyed, what we called, this ride in a tunnel. She even fell asleep for part of it. When the scan was over, we were told we would hear back from the doctor by the evening. We spent the next few hours enjoying our little girl, getting support from family and friends, and watching Hazel sleep peacefully. Then, sometime in the late afternoon, Dr. Azarz Marachelian, a neuroblastoma specialist, came to see us to discuss the results of the scan. She told us that the CT was not 100% conclusive, but she was fairly confident that what we were dealing with was a neuroblastoma tumor. She showed us the scans and described to us that the tumor was not a well defined shape, was pushing on the kidney and encroaching around part of the liver, but not invading it. She also told us that it was much larger than a lime, but was actually more like the size of a melon. She also had ordered a lab test of Hazel's urine which could determine 100% if this was a neuroblastoma, but we would not get the results until Sunday. She discussed with us all of the possibilities we were facing, which was a very difficult, but informative conversation.
Sunday, the results from the urine test came back positive, which then confirmed the diagnosis of neuroblastoma. One thing the doctor was concerned about is whether or not the tumor has spread to the bone. So on the following Monday, Hazel received a bone scan, and went under anesthesia to receive a biopsy and a bone marrow test. We were so blessed to find out that both the bone tests were negative! After a week full of many other scans and tests we were so blessed to find out that her cancer did not spread anywhere! This is what gave her a Stage 3 diagnosis. This news was so relieving because about 75% of all cases diagnosed are Stage 4 (or have spread throughout the body). She was still considered a high-risk case because of the nature and size of her specific tumor and her age, but we were extremely hopeful that she would beat this thing!
After 6 cycles of grueling chemotherapy, a 7 hour tumor resection surgery, an autologous stem cell transplant that nearly took her life and landed her in the ICU for three weeks, weeks in rehab doing physical, occupational and speech therapy, 20 doses of radiation, and 6 months of Immunotherapy, our girl was finally finished with treatment and was declared No Evidence of Disease (NED) in Spring of 2014!! She had 2 1/2 years of glorious, cancer free, living, where she grew stronger with each day. Just as she was starting her first day of Kindergarten, everything changed...
In August 2016, our little Hazelnut relapsed as we found three new Neuroblastoma tumors, two in her abdomen and one in a lymph node in her neck. We are currently still in the fight against this beast, but we are filled with hope that she can beat this again! We rely on our faith in God and through the strength and support we receive from all of those around us. Please keep Hazel in your prayers, and all kids like her, so they can have a childhood free from cancer!