This isn’t always an easy thing for me to talk about; I know it is hard for every parent. As each of us have had our hearts break and worlds stop at one point or another.
My Brayden was born on December 27, 2006. That’s when everything changed for me and I began living for something so much more important. He became the light of my life and my world started revolving around him.
On October 9, 2009, the world changed for me a second time. We had been back and forth from the doctor and the hospital for a month. Brayden started throwing up on September 11th. It started as just throwing up an hour after he woke up, to a few days later, when he started dry heaving the second he sat up in bed. Then it started happening randomly throughout the day, and then finally he would start waking up in the middle of the night vomiting things he had eaten twelve hours before. I was scared, but the truth of what was going on was so far from my mind.
After many trips to the hospital, several tests on his stomach, we went in for a CT scan of his stomach. While there, we were telling people his symptoms. The radiologist was talking to my Mom and she told him how it was mainly in the morning, and he told her that was a sign of something neurological. He said he wanted to have him admitted and have a CT scan done of his head instead of his stomach. I did not let myself believe there was anything wrong in his brain, I knew he was fine, as we had been playing baseball all summer, and he never stumbled or fell, and normally kids with brain tumors don’t just throw up, they also fall down, or their eyes cross, so many other symptoms, not just vomiting.
We were admitted and they took us back for the CT. I layed his body on a huge table, with him going partially into a big machine while several people looked at us through a glass window. He was scared and I held his hand. I told him everything would be ok. I sang Twinkle, Twinkle, Little Star to him, with tears in my eyes. I looked up at the people behind the glass, and my heart stopped. I could read on their faces that something was wrong. Dr. Pipp walked into the room and told me there was something in his brain and he would need an MRI. I was holding Brayden like a baby, with tears pouring down my face as I walked back into the hall. My mother started crying instantly as I sobbed that they found something. They took him back for the MRI and we started the 3 hour long wait for him to come back us.
My family began showing up at the hospital. Thank God we are blessed with very supportive family and friends. Although I was walking around in a daze because a part of me was missing, it helped for them to be there.
They brought Brayden back and we were sent to our room. A doctor walked in, one that is now a very big part of our lives, Brayden’s neurosuergeon. He showed us the MRI, explaining that Brayden’s brain had several tumors (one 3cm tumor in the middle and several 1-2 centimeter tumors around it); there were also pieces of tumor throughout his brain. And although I don’t remember this, he said Brayden’s spine was also covered from top to bottom in tumor. Three days later we found out he had a lot of free floating cancer cells in his spinal fluid. He was in the farthest stage of this cancer possible. We were thankful it was not in his bones, which does (rarely) happen.
Our new life began, a life living in the hospital and watching our son go through what no child should have to. Brayden had surgery on October 14th to remove half of the largest tumor, thereby relieving some of the pressure on his brain. He had a shunt placed a few days later. They were going to send him to rehab, but the cancer was too aggressive. Brayden’s bladder stopped working because of the tumors on his spine and they had to put a catheter in. Two days later we were moved to Aflac; chemo started the day after that.
The chemo regimen was very aggressive. We were told we had to be as aggressive with the cancer as the cancer was with Brayden. He had three months of chemo, and through a process called Apharesis, they collected Brayden’s stem cells. Then he had three more months of chemo with three stem cell transplants in between. The first round was prolonged by a month when Brayden became septic; we almost lost him. He was put on a ventilator which he coughed out. They tried a bypap machine but that didn’t work so we went back on the ventilator. That time the PICU was the worst hell I hope to ever go through with my child. We were in the hospital for 44 days and went home for two; this process was repeated 3 times.
We were discharged from Egelston and sent back to Scottish Rite for inpatient rehab…that didn’t go well. Brayden wouldn’t cooperate and seemed in pain still. We were discharged home.
We waited for his first MRI after discharge (May 2010). The day after the MRI we received the unexpected news that the MRI had not changed since January 2010. We had so much hope after that MRI – his tumor bed shrunk considerably and we were told he would probably never have to have radiation. Because there had been no change since January, we were told Brayden would need proton beam radiation. Worse yet, we were going to have to do this out of state, Oklahoma or Indiana.
So here we were trying to adapt to another new reality in our head. Brayden had been through so much already and here we were putting his body through something else.
Brayden made it through that. He actually loved Oklahoma and still talks about “At Homa”.
His next, post-radiation, MRI remained unchanged. The only thing left to do was biopsy what was on the bottom of his spine. We prepared for another surgery. The results came back as mostly scar tissue and 5 percent abnormal cells, likely changed due to treatment.
Brayden is an amazing 4-year-old and I am so proud of him. He will have a lifelong battle with the side effects from the treatment. Brayden is a fighter as are all kids with cancer. His next MRI is in June and hopefully the MRI will remain stable, as that means whatever is there is not growing.