Alex was a fun loving, energetic and “all boy” child. He was born April 15, 2008 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.
Two months before Alex’s third birthday, he started getting tired easier. He had several ear infections that year and we assumed his change in energy level was due to another one of these. Oddly, when we took Alex to the pediatrician’s office his symptoms disappeared and a physical exam showed nothing abnormal.
A few days later Alex developed a small rash on his cheek. It went away the next day. A couple of days later we noticed he had a droopy eyelid, but like the rash, it too went away the next day. Our gut was telling us something was not right. As we would get ready to make a call to the pediatrician, the symptoms would vanish.
In the middle of February 2011 we celebrated his sister’s first birthday with family. Alex was unusually clingy to us at her party. Some of our family members commented on how quiet he had been. This made us a little more concerned. Within a few days he had fevers and developed a strange limp that would come and go. The fevers were worrying us. We would ask Alex if anything hurt and he would point to the middle of his forehead. We immediately 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 continued. His temperature would ramp-up in the evenings and be gone by morning (we learned later that this is the pattern of “tumor fever”). After allowing adequate time for the antibiotic to run its course, we made another appointment with our pediatrician to find the source of the ongoing fevers. The pediatrician did blood work and it came back that Alex was anemic. Having the fever for so long and the anemia were concerning. The doctor also did a physical exam and thought Alex’s spleen felt enlarged. We were told to seek further testing at a children’s hospital and we chose 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. We were told that mono, a severe case of the flu, rheumatoid arthritis and leukemia were all possible illnesses. 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. His droopy eyelid returned and it looked like he had a bruise over his left eye. These symptoms, plus his blood work and fevers, led the doctors 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. The surgeon was confident he could remove the entire tumor and scheduled Alex to have surgery the next day. After a three-
hour surgery the whole primary tumor was removed. We were thrilled with this news. But the nightmare was not over. A bone marrow biopsy indicated the cancer had spread to many parts of Alex’s bone marrow, making his condition Stage 4.
Alex then underwent a series of treatments to stop this too frequently fatal disease. His regimen included numerous rounds of chemotherapy, surgeries, radiation, MIBG therapy, and a series of clinical trials at Memorial Sloan-Kettering Cancer Center in New York, New York, and with the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) in Grand Rapids. Unfortunately Alex’s body didn’t respond to these treatments like we had hoped it would. Nothing kept his bone marrow clear or stopped the disease from spreading.
After more than two years of heroically battling neuroblastoma, Alex found his ultimate cure in heaven on July 8, 2013 at the age of 5. Alex was a strong and brave little boy who never complained of the horrible ordeal he fought through. Every day Alex inspires us in the way he lived his life: full of courage, passion and strength. It’s our goal through The Alex Mandarino Foundation to carry on his name and find a cure for this horrible disease.
Katie and Tony Mandarino
Co-Founders of The Alex Mandarino Foundation