So Gray Today

Ty and Gavin, July 2010

Gold is an appropriate awareness color for childhood cancer (shiny and new and triumphant), just as gray is a fitting awareness color for brain tumors. Gray matter (get it?), but even more so, the overwhelming feeling when thinking about brain tumors is quite gray. It’s all gloom because it’s all just goddamn awful. 

I’m glad it’s been cloudy, cold, rainy and gray because that’s exactly how I feel on this first day of Brain Cancer Awareness month. My memories of what I witnessed leaves me with a dark, colorless range of emotions. I can’t stop thinking of all the things, large and small, that occurred during my son’s far too short time here with us. 

 

For Mother’s day when Ty was two, Lou bought me a bike with a seat on back for Ty. Ty was so excited to show me in the morning. We went for a ride on the boardwalk but he ended up crying the entire time. He hated the bumps. What I didn’t know is that he hated riding with me because it was giving him a headache. The one and only time he ever rode a bike in his life was painful for him. And I didn’t even know. How did I not realize? What if I was better tuned in and we discovered his brain tumor in May instead of August?

 

One night in August he was up all night, crying on and off. I would say “Ty!” when he started whimpering instead of comforting him because I thought he was being whiney, and I was exhausted. I want a do-over of that night, and so many others. The next morning, we went to the hospital and he fooled everyone with his happy smiles. That’s because his headaches were the result of lying down, it was causing pressure on his brain stem at night. During the day he was lively and happy, running and jumping. The team at the hospital looked at us like we were crazy when we insisted on an MRI.

 

After his first surgery, which took more than ten hours, I went back to the ICU with him and the clinicians started to wash him down. I couldn’t bear it because I didn’t want them moving his body after all the trauma he had just been through. I wasn’t allowed to sleep there but I stayed as late as I could. I remember there were five beds in the room with little children who were just so sick, and at 11:30PM the nurses were watching the MTV music awards. It was so harsh and loud, machines beeping, workers chatting and laughing, loud music, lights on, blood pressure and eye checks every hour. Ty was sedated but still, that was my first introduction to overnights at the hospital. There’s nothing quiet, warm, or comforting about it. It’s all quite… gray. 

 

The surgery resulted in MRSA meningitis and he’s lucky he survived. Everything hurt for weeks. Any bit of light gave him a headache so the curtains were always drawn. At one point he started choking so my mom, the nurse, and I grabbed a suction only to start pulling out strands of glue from his throat. Can you imagine? No one told me that when they surgically accessed the tumor partially through his mouth, that they use sticky glue on the back of his tongue to hold the instruments in place. He wasn’t even three years old yet, how scary for him! What a horrible feeling it must have been to have your throat coated with rubber fucking cement for weeks, unable to tell anyone about it.

A few weeks later, when we were trying to resume normal life just before starting chemo, Ty was sitting in the backseat of my car with a sippy cup, and he started crying. He threw the cup and he told me, “Mama. My mouth’s not working.” He couldn’t wrap his lips around and suck from the straw anymore. Just like that. How terrible for my baby, who was so proud of climbing the high slide by himself that summer and who was learning to do new things daily until it all started going backwards. 

 

The changes in his brain started stealing joy from him, bit by bit. First came walking. He was too weak after all that time in the hospital, and every time we would work on making his legs stronger the treatment would knock him back down again. 

 

His speech became slurred, and people struggled to understand him. How frustrated he would get. His mobility in his hands was compromised so he couldn’t play with his toys or build blocks the way he was used to. He needed help with art. Painting had been his favorite thing before the cancer stole that from him, too (holding and independently moving a paintbrush became impossible). 

 

Chemotherapy made him so sick all the time. He had countless bacterial and fungal infections that would have made COVID look easy. The constant swelling in his brain gave him unimaginable headaches. Radiation involved a mask over his face that was BOLTED to a table before he was wheeled into a giant machine every morning for another treatment that burned his skin and destroyed his tastebuds.

Radiation to the brain was necessary, but that’s another thing about brain cancer… radiation to the brain also impacts development. And in Ty’s case, he simply had too much, causing necrosis of the brain tissue. He was doing so great, but six months post treatment he suddenly lost his ability to move his entire left side overnight. He couldn't even hold his head up. God that morning, how we both just cried and cried in shock and fear. He was never going to recover from that. He was four years old, and he would never do the things that four-year-olds do - like jumping in muddy puddles.

 

This is all very hard for me to write about. There are so many more things I should share for the sake of awareness, but I just can’t. And I am just one mom of thousands who witness such suffering. 

 

Thousands of kids get brain cancer, and we don’t know why!?!? It is the MOST fatal of all cancers in children. Progress has been made since the ten years we’ve been wrapped up in funding research, but there is still so much work to be done before the statistics are going to change. Help us do this. Please. Help us raise awareness and funding for innovative research that will ultimately lead to safer, better, more effective treatments. 

 

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