September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
Elias was always a happy baby until he was about four to five months-old. He started to always cry and he didn't want us to pick him up as much and play with him. Walking with him bothered him, a lot of yelling would bother him, and we were always asking ourselves why is he crying so much? Why is he so uncomfortable? We took him to the hospital in August 2015, and they told us that he had a respiratory infection and was just dehydrated. We were in and out of our local hospitals where we live and in Reading. They would just send us home once he got better and a couple of days later, he'd be back in the hospital getting worse again. The right side of his body started to go numb. He couldn't hold his bottle. It got to the point that he could not even pick at his table food or anything like that.
On September 29th, we were admitted to the hospital again for a respiratory infection. After a few days, our son was not the same. He was not sitting; he could not stand; he didn't want to eat; he didn't want to do anything. He was running on basically no sleep. We found out he was having seizures - "baby" seizures. And then he started to have the more intense seizures that made his heart rate really, really high. His last seizure was one of the worst ones - his heart rate went up to 239.
His dad and I decided we needed to take him somewhere else and we were told we need to get an MRI done as soon as possible with blood work. They did an MRI on him and, not even 5 minutes from us coming back from the from the MRI, the doctor came back and told us they had the results and needed to talk to us. I felt like my world was going to end when he told us that they found a little mass in my son's brain. I started to scream. I started to yell. To top it all off, the doctor tells us they also found water in his brain, which is called hydrocephalus. Literally, I thought my world was going to end.
He kept on having seizures. They rushed us to Lehigh Valley Hospital. I can't thank LVHN enough. They saved my son's life. When we got there, they explained to us that my son had a carcinoma tumor in the left ventricle of his brain. On October 1, 2015, they removed the tumor, and it was a success. They were able to take it out completely. They thought it was a benign tumor at first, but we later found out it was a cancerous tumor. Elias was in the PICU for more than 2 weeks. He had breathing tubes and was completely sedated. They were trying to drain water out of his brain. But his pressure was too high and it would make his heart rates go up and go down. And his blood pressure would go up and down. They decided to put a shunt in on October 8, 2015. After they took the breathing tube out, Elias did not want to move. He didn't want to wake up or do anything. But his dad and I were stable and we did believe in God.
After all those sleepless nights, we went to the regular floor and he started getting treatments and some physical and occupational therapy. They then sent us to Good Shepherd in Bethlehem. They were marvelous and did a really, really great job with him. He was there for about 3 or 4 weeks, just getting stronger and stronger and stable. In November, he got his central line put in and his feeding tube. That also was our first cycle of chemo and everything started to get real for us. To see him getting sicker and sicker and getting weaker and weaker - it was a lot for us to handle. It was stressful, but we still maintained and stuck by each other. He did three cycles of chemo and was also in the hospital for Christmas for two weeks because he had caught a cold. He also did 3 bone marrow transplants at the Children's Hospital of Philadelphia from February to April. Those really got him very weak and very cranky. His body would hurt and he didn't want to eat or anything.
I want to thank the Pediatric Cancer Foundation of the Lehigh Valley for everything that they have done for my family including Lisa for all the times that I was able to message her and ask her if she had time to talk so I could vent. I had no one at the times when his dad was working and I couldn't bother him. They have done lots for me. They have helped financially with gift cards, but also emotionally. They're a great foundation!