My amazing, beautiful, smart, educated, independent (is there a limit on how many verbs I can use) daughter was diagnosed with brain cancer at 27 years old. My name is Cindi aka Momma Cindi to Emalee. I remember receiving the phone call that started a chain reaction of events that changed our family forever. It came on a Sunday morning when our daughter called to tell us she was in the ER and a scan had revealed a brain tumor. The on-call surgeon wanted to schedule a craniotomy.
What you do if this was your child
You hang up the phone and cry (and scream) for just a few minutes and then the fight or flight response kicks into high gear. You start the Mom bulldozer to take out all the obstacles in your way. First, we need to remove the tumor. In my mind, the tumor could easily be removed by the “best” neurosurgeon and everything would be fine. No bad outcomes. I had a confident advantage given my employment at the local hospital. I had peers that could put us in touch with top-notch providers, care, and technology. I would find the “best” neurosurgeon for my daughter.
I was so naïve about cancer
As a family, we survived the craniotomy, started a rehabilitation program, and believed we were back on track. About 5 weeks after the initial phone call, the second call came. The pathology results confirmed brain cancer with a genetic mutation. Again, I thought to myself, no big deal. We would start radiation and chemotherapy and we have this beat. I remember the doctor explaining, “This is a good type of cancer. Grade II. Slow growing.”
It’s a BIG f’ing deal
In my secret mom drawer, I still have the oncologist’s handwritten note detailing the treatment and life expectancy for my daughter. What parent wants to know the life expectancy details of their child? I quickly received an education in primary brain cancer. It’s not curable. It will come back (not if) and when it does, it will be angry and aggressive. The treatment options and brain cancer research advancements for Gretchen, as Emalee named her brain tumor, are egregiously outdated. There has been little change in over 30 years – almost older than Emalee.
How can this be, this is the United States and not a third-world country. Flight or fight takes over again and I want answers! I need them. We live in the United States we have the best healthcare and most advanced technology. I want something better!!! Emalee’s tumor wasn’t at a stage to get any trial medications; she would have to the standard 30+-year-old protocol, just like everyone else. The cause of brain cancer is unknown, and it is rare for brain tumors to run in a family, however, I often think about wanting our family scanned immediately for prevention and treatment. Reality is laughing at that crazy nonsense. You just can’t have anyone’s brain scanned.
The first round of the “medical treatment” lasted 18 mos. Her skull recovered from the surgery and her brain started to begin to heal after the last dose of chemotherapy. On the outside, Emalee appeared to be healed. Tiny piece by piece she began to heal emotionally and start rebuilding her foundation.
Perseverance is key
We persevered through hate and anger and over time transitioned to happy, grateful, and optimistic. The transition began in 3-month increments between routine monitoring and scans. In those first 90-day increments you learn to do the best you can with the time that you have. You seek support and resources, and you hit a lot of brick walls. For example, local support groups do not exist in rural communities like central Nebraska. You learn through coincidental conversation, that more people suffer from brain cancer than you ever imagined. You begin to meet other people and you share stories. You start to create your own support network. You learn about organizations and conferences. You absorb as much knowledge as you can. You do this because this is how you cope and survive. You cry when you are alone in the shower or driving down the interstate.
You keep your guard up so you do not appear weak; you are supposed to be the glue that holds things together. You lose sleep wondering if the gene mutation/cancer was passed from your body. You study your children constantly for any signs that are consistent with the countless articles you have read. You hide away the scan anxiety that you suffer through with your child. You maintain optimism and never lose hope that this case, your daughter, will be the story that defies the odds and ends in a miracle. You wait and wait and wait because someday is around the corner. I keep my Mom bulldozer in tip-top shape; it’s ready to go to work for her at any moment.
Cancer is a season
Yearly rituals, like holidays and birthdays, are not the same anymore. You spend more time focused on the ‘here and now’ and take in the moments when your family can be whole because science says it is only temporary. You watch as your daughter begins to bloom, it’s different from the past season’s blooms. She shines brighter now. She is stronger than ever, but you always know that a frost is coming.
Our cancer experience has changed our family. We have formed an incredible bond as a family. For me, the most amazing bond to watch grow is the one between my children. We had to suffer from brain cancer together to have our lives changed. The experience was nasty, dirty, and awful. The experience has made us better, but I did not get here alone.
The most best days
A pivotal moment for me was when I learned about the “most best days.” If you are struggling with your own journey, I am sharing this video with you. This was a game changer for me. It turns out a cancer diagnosis taught us, what everyone should do every day. Have the most best days.