What is September to you? Is it the beginning of fall? Is it the school year getting into full swing with homework and school picture day? Is it football games and pumpkin spice lattes?
September used to just be my birthday month.
As a little girl I planned for it all year. As a young woman and into adulthood, I would celebrate an entire birthday month. When Sophia was born we made birthday months an event for all of us – mine September, hers November. I’m so very glad I did.
But, September isn’t my birthday month anymore.
It isn’t picking out a school picture outfit, or doing homework, or taking Sophia to the football game so she can cheer with the big girls. Instead, September is Childhood Cancer Awareness month and I am devastatingly aware of childhood cancer. It is the month that I watched my only child’s deepest decline before she succumbed to brain cancer.
I didn’t know there was a month dedicated to childhood cancer awareness until I was a cancer mom.
I didn’t know that only 4 cents of every cancer research dollar is invested in ALL pediatric cancer research. There are one 100 different types of childhood brain tumors alone. I didn’t know that our babies are given drugs made for grown-ups (with fingers crossed) that they might help.
I didn’t know. I didn’t know that I would be asked to double glove my hands so that I could administer chemotherapy, aka “poison” to my 7 year old. I didn’t know that she would be forced to have a plastic mask molded of her face so that it could be used to fasten her down to a table for radiation. I didn’t know that she would be poked so many times, that they would have to bring in a special team to find her veins for blood work. I didn’t know that each year nearly 16,000 families in the U.S. would go from not knowing childhood cancer to knowing it. I never ever thought that my only child would get cancer, especially not a terminal brain cancer. Those things happened to other people – until it happened to me and my family and my sweet baby girl. The harsh reality is that you aren’t a cancer parent until you are. You don’t know, until you do.
I wish I didn’t know September.
Somedays, I wish I could wake up in that place of not knowing. I wish I didn’t know what I do. I wish I hadn’t seen what I’ve seen. I wish I woke up and got my sweet daughter ready for school. I wish we got to experience all of Sophia’s life milestones – homecomings, recitals, soccer games, proms, vacations, graduation, college, marriage, babies – all of it.
I’ll never know what it is like to hold my child’s baby. I remember crying that out loud at the hospital the first week of diagnosis. Grieving a child is such a complicated loss. You lose all that you were and had already been and you lose every hope and dream and milestone.
From the beginning of our cancer journey, I have believed that if people saw what cancer does to children then they will care enough to fight it.
That is the reason that I have been so transparent with our journey. I’ve told, the best that I could put into words, of what it felt like to feel and hear my precious Sophia die. She died, that happened, and I felt it. I watched her body be ravaged by cancer and medicine for nearly 8 months. Her beautiful skin stretched and torn. Her fit healthy body, that used to dance and run and tumble, become bloated and immovable. Her sight – destroyed. Her hearing – lost. Her ability to speak – stolen. She was trapped in her body, unable to communicate. She was only 7.
I do find blessings in our experience.
For example, God blessed us with the ability to communicate somewhat, with just a look. Her vision was blurred and doubled, but she could look at me and I could know what she needed in that moment. I thank my heavenly Father for that – oh how I thank Him for that.
When Sophia died, I immediately went into the auto-pilot of needing to protect her body and her dignity. I bathed her and washed and brushed her hair for the last time. I cannot explain what it is like to bathe your dead child. Cancer did that. Cancer stole her. Cancer stole my child, it stole our life, our family, every hope and dream. Cancer stole it all. I hate cancer.
I know you hate it too, but do you hate it enough to do something about it.
In life, we don’t typically fight other people’s battles. We mind our business, we take care of those we love. We may occasionally speak out on behalf of righting a wrong, but we typically don’t fight battles that aren’t ours. My prayer is that you will fight this battle and that this battle will never be yours to fight. I pray that no other child, mother, father, grandparent, sibling, or friend endure the wrath and devastation of cancer.
Please join the fight against childhood cancer with me and every cancer mom out there.
Sophia is the daughter of Angel Myers McIlrath and Josh Myers of Ocean Springs, MS. In 2017, upon the loss of their only child, the SoSo Strong Pediatric Brain Tumor Foundation was born. A non-profit 501(c)(3) organization established to find a cure for DIPG and other pediatric brain tumors, and to identify the cause of DIPG while spreading awareness about these cancers and educate others and improving the lives of patients and their families.
About the Author
Thank you to Angel Myers McIlrath for partnering with Gulf Coast Mom to bring awareness to pediatric cancer.