This is our story. My name is Sarah and along with my husband Brandon, we are the proud parents of Nathan (8), Dominick (4) and William (2). In January 2022, we heard the WORST words imaginable, Dominick has neuroblastoma cancer. I will never forget hearing my baby has cancer and my world shattered into a million pieces.
As an introduction to Dominick…he is a bright, bubbly 4 yr old who loves his ABC’s, 123’s, riding his balance bike and running around with his brothers. He loves to eat and drinks water like a fish and has always been in the 100th percentile for weight and growth. And school, he ABSOLUTELY loves school.
January 18 2022
I was at work that night when my husband told me I needed to come home to take Dominick to the ER. He kept waking up inconsolable in pain. He had an appointment with his pediatrician the next morning but my husband’s gut said he needed to be seen now.
For the previous month, he would lay down on his tummy instead of running and playing. He went from drinking 6 bottles of water a day to having to be coaxed to drink just one. He went from devouring his food to having to be asked to take a bite. He would wake up every night and cry out holding his tummy and legs. We thought it was general tummy problems and growing pains. Our most concerning change was his weight loss except for his tummy.
Our parental instinct said something more was wrong and a visit to the pediatrician wasn’t going to cut it and he needed to be seen now. This was a very difficult decision for us as Dominick does not have health insurance. We could afford the pediatrician but knew we couldn’t afford the ER but he needed it. So I came home, packed a bag, took him out of bed, and we headed to the ER in the middle of the night.
January 19 2022
We sat in the ER for 9 hours. They ran blood tests, x-rays, and more tests. His blood indicated he was fighting something. His x-ray indicated there might be fluid on his kidneys. The Dr said they weren’t sure what was wrong but we were going to be admitted. They did a CT scan before moving us upstairs. Once we were settled upstairs a team of Drs came in. They said we have an answer. I thought great! Tell me what’s wrong so we can fix him and get back home. Then they said it’s not good. They proceeded to tell me that my 4 yr old had neuroblastoma cancer. Cancer. They continued with it wasnt fluid on his kidney, the CT scan showed it was a large tumor that went from one side of his body to the other. This is why his tummy looked so big while the rest of him was fading. The whole room faded while I processed what they were telling me.
They told me they didn’t handle cancer and we were getting transported to UNC cancer hospital. When I was finally able to speak I asked them what the name of the cancer was and they told me again but followed with “Do not Google it.” They then looked at me with the most sincere sympathy in their eyes and left the room.
I then had to make the worst phone call of my life to my husband, Brandon. He was anxiously waiting to find out what was wrong with his first born son. I was about to shatter his world. I of course Googled it anyway and learned only 1 of 2 kids with neuroblastoma will survive. He had a 50/50 chance of living and most survivors relapse and once relapse happens the statistics drop to only a 5% survival rate. I held Dominick while we waited for the ambulance to arrive. People kept coming by and bringing him toys and food and telling me how sorry they were. The ambulance finally arrived and he was wheeled out on a stretcher. I will never forget that 45 minute ambulance ride where I sat crying silently.
We were admitted to UNC and into our room for the next 2 weeks. He had more scans as they were deciding how to biopsy the tumor safely. The doctors were leaning towards an open biopsy when all the sudden a ball sized tumor popped up on his neck. They could safely biopsy this one, but it meant the cancer was spreading. He then went into surgery to biopsy his neck and bone marrow as well as have a broviac line placed in his chest for his chemo treatments and labs. (I didn’t even know there were kids with cancer walking around with this tubing sticking out of their chests.) We waited for the results to come back so they could start the right chemo. The results were stage 4 neuroblastoma and was considered stage 4 high risk because of his age and the tumor spreading. Luckily, the bone marrow biopsy came back negative for now. Maybe we could get in front of it before it spread further throughout his body.
This was during covid. No one was allowed to come to the hospital. I had to do this mostly alone while my husband sat in agony at home. I tried to stay so strong for Dominick and not cry while he was awake. Just be normal and have fun and tell him everything was fine. I did have a full blown anxiety attack one night from trying to suppress it all. I couldn’t breathe, I couldn’t stop the tears, the room was fading and I needed someone to help me. I considered asking a nurse for a hug but didnt know how they would feel given the covid situation in the world. So I sat alone and tried to work through all of the what ifs.
What if he never got to spontaneously tell me that he loves me? (He is mostly non verbal at the moment) What if he didnt make it to his big 5 birthday? Was I going to have to hold him and watch him slowly die in front of me? How could my baby be taken from me when his favorite things were the ABC’s? It’s too much for any parent to have to bear to think about. It’s too much for any innocent child to have to go through and endure.
We have a long journey in front of us, but we got this. We have to. We finished our first round of chemo and were able to go home with a long game plan of how to attack the cancer. Lots of chemo rounds, surgeries, high dose chemo, radiation, immunotherapy and hopefully he would be declared NED (No Evidence of Disease).