Brayden Lewis 

On March 31st we went for a sick visit at our pediatrician’s office. She agreed that he had a viral infection but she didn’t like the look of Brayden’s stomach, it was bloated, and she sent us to the ER for scans. We were told within hours that what I thought was our constipated, sick kid had a tumor and we were being transferred to Arnold Palmer Hospital that night. 

Brayden was sick, but the biopsies needed done to know what we were dealing with, so he went under for a tumor and bone marrow biopsy 5 days before his 3rd birthday. Unfortunately he had complications with his respiratory infection which lead him to being intubated and sedated for 40 days, in which 6 of them were spent on ECMO (life support) because his lungs were failing. We did a round of emergent chemo to try and get the tumor to shrink and relieve the pressure on his lungs. He had so much fluid retention and build up, he had 2 chest drain tubes and an abdominal drain. An IV in each leg and arm, countless medications running. We thought he wasn’t going to make it. The diagnosis of Neuroblastoma wasn’t even the hard part.

But then he improved. The ECMO and plasmapheresis got the infection and reaction under control and allowed him to rest so he could keep fighting. We thought he’d be on life support for at least a few weeks, but day 6 when it came off, we were so relieved. We slowly had Brayden come back to us, little by little each day. 

We recently finished our 5th round of chemotherapy, the tumor hasn’t shrunk as much as we’d like, but it’s shrunk and that’s what matters. We are awaiting surgery decisions from the APH and St. Jude teams, we’re thinking because of the vessels the tumor is near that St. Jude’s will do the surgery. 

We have a very long journey ahead of us, but our little guy is laughing, playing, smiling. Even on his bad days, he’s finding some kind of joy. He is the BRAVEST kid I know and I’m so proud of him.  

 

"Brayden the Brave"