One day you are a regular mom and the next day you are a cancer mom. It happens in an instant.
It doesn’t matter if bottle fed or breast fed or if your child ate McDonalds or broccoli, played sports or read books, if you are black, brown or have white skin, if you are an infant or a teenager.
Cancer knows no boundaries, knows no race. It seems to come from nowhere and then one day you find yourself thrown into this world of cancer where terms like chemotherapies, MRIs, radiation, PET scans, nausea medicines and mouth sores become your everyday vocabulary.
My oldest daughter, Katie [above], was 15 when she was diagnosed. She was a star athlete, ate all her fruits and vegetables, did all the right things, and it didn’t matter.
What started as a little pimple on her chin turned into a malignant tumor, a rare form of rhabdomyosarcoma, within a matter of months.
I recall feeling like this must be the start of her “acne” days since she was a hormonal teenager.
We went through all the expensive forms of skin care to no avail. We ended up seeing two dermatologists, one urgent care visit, two emergency room visits before we finally got some answers as to what this mass was growing on Katie’s chin.
No one was thinking cancer during those months and when we finally got the proper diagnosis, it was like the wind was knocked out of all our sails.
Instead of Katie’s sophomore year in high school being filled with football games, homecomings and prom dates….it was filled with various forms of chemotherapies, 28 days of radiation, a bald head, not to mention hundreds of hospital visits.
Karen and Katie
She was robbed of her normal teenage experience the day of diagnosis and our family was robbed of the normalcy of a carefree family life.
Katie is now (as of 2022) thankfully thriving as a senior at Valdosta State University.
She still gets scans and checkups every six months. The protocol that she endured for a year had not changed much since the chemotherapies she had to take were invented back in the early 1960’s.
Thankfully, this 50+ year regime did the trick for Katie. She was lucky.
But the fears of relapse will never be far from this mother’s mind. Knowing that there are no “new tricks” if she does relapse makes me catch my breath.
The fact that Katie’s drug protocol and most other childhood cancer treatments have had no significant changes or improvements in decades was one of the most upsetting pieces of knowledge I learned when my family was thrown into the world of pediatric cancer.
When I think of all the other progress that has been made in literally all other industries of life in 50 years, and no real significant changes to pediatric cancer treatments, honestly makes my blood boil.
The only reason for this is that pediatric cancer treatments is still considered too rare and therefore not a “money maker.”
Less than 4% of federal funding goes towards pediatric cancer treatments. I know we all feel our children deserve so much better.
The thing is, it is the treatments themselves that normally lead to a child’s death.
These treatments are so toxic that even though they kill the cancer, they leave behind such destruction to the child’s body and there are just so many devastating side effects. This needs to change.
During Katie’s battle, she was treated by the amazing staff of Children’s Healthcare of Atlanta.
While there, we learned of an amazing organization called CURE Childhood Cancer. This group would bring us meals while Katie had her inpatient visits, provided counseling services, as well as included us in various activities throughout the year that provided much needed smiles.
Even though our world had been thrown upside down, there was such comfort to be surrounded by people who truly understood what our family was going through.
Once Katie finished treatment, I knew I needed to be part of moving the mission forward of spreading awareness about lack of funding for childhood cancers. I joined the staff of CURE Childhood Cancer a few months after Katie’s completion.
CURE’s mission is to conquer childhood cancer through funding targeted research as well as support families currently in the battle.
CURE invests over $4 million annually to very promising research. At the same time CURE is walking alongside families who are facing a cancer diagnosis by providing financial assistance, meals, counseling and so much more.
I truly believe we will be able find a CURE in my lifetime and so thankful to work for an organization whose sole mission is to do so.
September is Childhood Cancer Awareness Month. This is a time to shine the light on the realities of childhood cancer, emphasize the importance of life-saving research, and join to make a difference for children diagnosed.
To learn more how you can help, please visit https://curechildhoodcancer.org.
