Alex has always been known as fun loving, energetic, and “all boy”. On April 15, 2008 he was born without any complications. He met all of his developmental milestones early. By the time he turned one, he was known as a future linebacker by family and friends because of his toughness. He loved playing rough and had no fear in anything he did. Looking back we never thought our precious little boy could have a tumor inside him.
Two months before Alex’s 3rd birthday, he started getting tired easier. He had had a couple of ear infections that year and we assumed his change in energy level was due to another one of these. After a visit to the pediatrician, we were told he was healthy and there was nothing to be concerned about. A few days later, Alex developed a small rash on his cheek and it went away the next day. A couple days later, we noticed he had a droopy eyelid. Our gut was telling us something was not right, but we didn’t want to be those parents that overreacted and ran to the doctor with every little thing, especially since we had recently been there and they said he was fine. We decided to talk with a pharmacist about the droopy eyelid. We were told that it was most likely an allergic reaction and left the grocery store with a bottle of Claritin. Two days later his eye had cleared up.
We celebrated his sister’s first birthday with family in the middle of February. Alex was unusually clingy to us at her party when usually he’s all over the place playing with his cousins at these functions. Even some of our family members commented on how quiet he had been. This made us a little more concerned. A few days later, he began getting fevers and developed a strange limp that would come and go. We weren’t too concerned about the limp and assumed he had stepped on a toy or something. The fevers, however, were worrying us. We would ask Alex if anything hurt and he would point to the middle of his forehead. We thought he had another ear infection and made another appointment with our pediatrician. The doctor told us Alex was sick with a sinus infection and prescribed an antibiotic. After several days of being on the antibiotic the fever was not going away. It would ramp-up in the evenings and be gone by morning (later we would come to find out that this was the pattern of his “tumor fever”.) After allowing adequate time for the antibiotic to run its course, we made another appointment with our pediatrician when the fevers didn’t go down. At the pediatrician’s office they did blood work and it came back that Alex was anemic. Having the fever for so long and the anemia were concerning to our pediatrician. The doctor also did a physical exam and thought Alex’s spleen felt enlarged. We were told to go to a children’s hospital after they determined they ran the tests they could. Later that day we ended up at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.
We spent the first two days at DeVos getting numerous tests and answering the same questions by many different doctors. Mono, a severe case of the flu, rheumatoid arthritis, and leukemia were all possible illnesses we were told he could have. Test after test came back negative. While the doctors tried to figure out the puzzle, Alex began limping again. This time it was more noticeable. He also started getting the droopy eyelid back and it looked like he had a bruise over his left eye. These two symptoms, along with his blood work and fevers made the doctors think to check for neuroblastoma. On March 14, 2011 Alex’s urine test showed he had elevated levels of catecholamines, indicating he most likely had neuroblastoma.
The CT scan confirmed it was neuroblastoma and it showed a tennis ball size tumor on his left kidney by his adrenal gland. Later that evening, we met with a surgeon. He was confident he could remove the entire tumor and scheduled Alex to have surgery the next day. After a 3-hour surgery they were able to remove the whole primary tumor. We were thrilled with this news. However, a bone marrow biopsy told us that the cancer had spread to many parts of his bone marrow, making his condition Stage IV.
As of now, Alex has gone through five rounds of chemotherapy and we are planning to have a stem cell transplant soon after his 6th round of chemo. This is definitely no life a parent wants for their child. We spend as much time in the hospital as we do at home. Alex has adapted well to everything and is a real trooper. He continues to amaze us with his energy level and his overall love for life. We stay optimistic and have faith that he will beat this. We look forward to the day when a cure for this terrible disease is found.
Tony Mandarino | July 8, 2011