Meet Rafael – Neuroblastoma

When Rafa (Rafael) was 16 months old, the area between his eyebrows became very swollen and mis-shapen. I took him in to see a pediatrician and they said he has a sinus infection. After a week of antibiotics it was no better so I called the office and insisted on seeing his primary pediatrician. We went in and she ordered a CT scan. We were told that Rafa had a tumor and were told to leave for the Children’s Hospital in Denver (we lived in Nebraska at the time) immediately. Upon arriving the doctors suspected he had a cancer called neuroblastoma. Subsequent testing and biopsies confirmed that he has Stage 4 High Risk Neuroblastoma.

Rafa having cancer has affected our family in many ways. We relocated from Nebraska to Colorado for his treatment and decided to stay here in Denver. Denver is a lot more expensive than Nebraska so we don’t have as much money as we used to. Our daughter Reina, who had recently started preschool, had to stop going because we didn’t want her bringing home germs and viruses to her brother, who throughout most of his treatment had no immune system. We had no permanent home for the first year and a half. We stayed at the Ronald McDonald House for 7 months at a hotel for a few months and then at a place that provides apartments for families like ours for 6 months. Once Rafa’s treatment were drawing to a close we left Brent’s Place and got an apartment. Rafa is in speech and physical therapy. While he’s been off treatment since August 2017, he continues to be affected by it. Due to complications from radiation his body does not make hemoglobin and he’s been receiving blood transfusions every three weeks since November 2017.

My son never ceases to amaze me. He has handled treatment amazingly well. Neuroblastoma has the longest and most brutal treatments of all childhood cancers. His strength, resilience, courage, and positivity humbles me.

I am so grateful for the Gold Hope Project and our amazing photographer Amy Liehr. I had been wanting to have family pictures taken but we haven’t had spare money. I appreciate you all so much!