I was very reluctant about sharing this deeply personal life circumstance but I’ve come to a place where I think sharing could do more good than harm. Rene Marsh is a Correspondent for CNN.
Life can change its trajectory in the blink of an eye and perfect becomes imperfect overnight. I believe I always knew that but now I understand it. December 22 was my life’s transition. The Doctor with an MRI in hand told my husband and I “your son has a fast growing tumor in the center of his brain. The most malignant grade of tumor.” When doctors tell you your child has brain cancer tears flow into your eyes, you’re paralyzed with emotion and you feel like someone is gutting your insides, like a jackolatern gets gutted.
My eyes are permanently red and headaches last for days these days. The emotional toll is not like anything I can describe. Your chest feels like it’s caving in and you’re heart and stomach are sinking. It’s a dark feeling. You feel like this can’t be real. But it is and there’s no escaping it.
So this is my life now. The child who I dreamed about for years, who I carried for 9 months and smiled every time I felt his kicks inside me has brain cancer.
I did everything by the book when I was pregnant. After birth, for 9 months he appeared to be a perfectly normal and happy baby. Literally overnight his life and ours took an unexpected turn .
Blake’s left eye movement became restricted. He could only look forward and to the right but he couldn’t move his eye to the left. What we thought was an eye problem was the tumor pressing against the nerve that controls eye movement. Everything happened quickly after that.
At 10 months of age my son has endured brain surgery and one round of chemo therapy. He had a near fatal reaction to some of his chemotherapy treatment. After chemo my sons heart rate ramped up. Fluid surrounded his heart, constricting it. He was rushed to ICU where they performed a procedure to drain the fluid. During the procedure he went into cardiac arrest. I will not forget the moment the doctors came to the waiting room to tell us our sons heart stopped beating. We were broken.
We fell to our knees and prayed so hard. Some time had passed and the doctors returned to say his heart was beating again but not strong enough so he was placed on life support. My husband and I never stopped praying and believing what we were praying for would come to pass. Four days later our son was off life support. In another 2 days he was off of the ventilator and on super bowl Sunday he was out of ICU. My son is a fierce fighter.
Now we are facing our next challenge. How to treat the tumor that remains in his brain. The treatment that was supposed to help him nearly killed him and that treatment was “his best shot at getting cured” the doctors told us.
Cancer doesn’t just happen to your child it happens to everyone in the family. Its a new way of life with feeding tubes, siringes and side effects of chemo.
Nothing tears up your heart more than your kid in pain or feeling sick because of high toxicity drugs that were not designed for children. The pharmaceutical industry’s primary focus is making drugs for adults because childhood cancer is rare and cancer drugs for adults are more profitable. The the dosage for these drugs are adjusted for children according to their weight.
According to the National Pediatric Cancer Foundation Only 4% of the billions of dollars that are annually spent on cancer research and treatments are directed towards treating childhood cancer. The foundation also found that since 1980, fewer than 10 drugs have been developed for use in children with cancer, as compared with the hundreds of drugs that have been created exclusively for adults.
I’m know progress has been made to treat several types of childhood cancers over the decades but it’s not enough. This from a mother who has spent time on the pediatric oncology floor at The hospital where my son is being treated. It’s not enough .
If nothing at all perhaps this post will allow me to find some purpose in this pain and lead someone to reflect on their lives and realize things aren’t that bad or maybe you have a similar story.
I write this as a mom who desperately wants her son cured and never wants him to have to deal with cancer again. I believe some of the best doctors are reviewing my son’s case but medicine is sometimes an imperfect science and there’s no 100% guarantee the proposed treatment will cure my son.
Deep down I believe my motivation to post this is I hope that by sharing my son’s story in return the universe will guide us to the perfect treatment that will cure him.
Please share if you believe every child deserves more than a life with cancer.
- Calvin Hughes I am so so sorry Rene. Count me in as a prayer warrior for your beautiful, strong son.1Hide or report this
- Semhal Tadesse Araya Rene, I’m speechless and devastated for you and your family. Thank you for sharing this with all of us. I will pray for your strength and for a cure. My God bless you all.1Hide or report this
- Mike Ahlers Rene, I don’t know if I believe in miracles, but something very close to one happened in my family and I’ll pray the same happens in yours. That is a beautiful child, and even in the midst of all this misfortune, I know that he is lucky to know your love. May God bless him.1Hide or report this
- Sharon Lawson Thank you Rene for sharing your very personal story. I’m going to keep your baby boy and your family in my prayers. Your son is a survivor with an incredible testimony to one day share 🙏🏽🙏🏽🙏🏽2Hide or report this
- Claudette Sergeant Since I heard, prayers have been going up for him, you and husband! Keep the faith and hang on to God’s promises….he’ll never leave you nor forsake you…he’s the great miracle worker.1Hide or report this
- Laura Kellerman What devastating news. I’m glad you had the courage to share it so we can pray for him and for his doctors and for you. He’s so beautiful.