It was the moment every parent hopes will never come.
I celebrated my 41st birthday with my husband and our two sons, Bradley and John, on March 29, 2010. Ironically, I spent time that morning reflecting over coffee on my good fortune and our family’s many blessings. I had no idea that days later, our rock solid foundation would collapse.
On March 31, 2010, our 15 year old son, John, woke us at 5am complaining of a headache focused over one eye. Before he could even finish explaining the pain, he began vomiting on the bathroom floor. In the ER our worst fears were confirmed. A mass. A glioma. Further testing.
Bi-thalamic, high-grade astrocytoma. I was numb. My motherly instincts kicked in – driving me to be proactive. I scoured the country and the world to find treatment options. We were shocked at how little knowledge the doctors had to share with us about John’s tumor. This insidious disease robbed John of everything he loved, his ability to walk, talk, show emotion, eat and ultimately breath. I watched helplessly as my beautiful 6’2’ 190 pound son wasted away. John died on January 7, 2011 only 10 months from diagnosis. For a time, I wanted to die with John, to hold his hand and accompany him wherever that path led him. Instead, I decided to live in a way that I could not have done before.
I see the world in a different way now and know that this horrible ordeal happened to my family for a reason. It’s our mission to change the experience for those who follow us down this unimaginable path; to offer guidance and resources to those families who are forced to endure the journey we’ve endured; to offer comfort, peace, empathy and – ultimately – a cure. No one should know the depth of our pain. When we succeed, no one will have to know.
I hope it helps you to know you are not alone; although each story is different we can gain strength and hope through an exchange.
Stay tuned. We’re looking forward to creating a space where you can easily share your story. Until then, we’ll post inspirational and heartwarming stories — stories that make us want to continue the fight against pediatric brain tumors.
HER STORY- POSTED: FEB, 2012
JENNIFER J., CHICAGO, IL
ON OCTOBER 21, 2001, OUR DAUGHTER ROSEMARY WAS DIAGNOSED WITH A BRAIN TUMOR: CHOROID PLEXUS PAPPILOMA WITH AREAS OF CARCINOMA. We suspected something was wrong at her third birthday party when she was limping throughout the house. She also had a history of seizures as a baby.
After the doctors ruled out problems with her bones they ordered an MRI. The MRI showed a large mass in the ventricle of her brain; however, the doctors were bewildered because she never suffered from hydrocephalus. We were directed to a neurosurgeon, Dr. David Frim, at the University of Chicago Hospital in Hyde Park. The first surgery went very well and the doctors felt that the entire tumor was successfully resected. However, Rosemary’s brain pressure was unusually high and the only way they could decrease it was by placing her in a drug-induced coma. After a few attempts to wean her off the sedation, the doctor ordered an additional MRI. This MRI revealed that there was more tumor; thus, cancer was suspected and proved through pathology. Rosemary underwent two additional surgeries, six months of chemotherapy, six weeks of radiation, and one month of rehabilitation at La Rabida on Chicago’s lakefront. She re-learned how to sit, walk, and feed herself in 30 days! Children are healing machines! Her expected length of duration was 3-4 months, but we were back home in a fraction of that.
Rosemary will be 12 years old on October 15. She has an annual MRI and she is not on any medication. We are grateful and praise God.
We also turn to God for the daily struggles that Rosemary faces as a young brain cancer survivor. Her oncologist attributes her learning difficulties to radiation. She has peripheral vision loss and we have been told she will never drive. She struggles in school and has an IEP (Individual Education Plan) that is written to accommodate many limitations in all subject areas. Her memory is limited and she tires easily with academic tasks, tasks requiring fine motor skills, and all physical activity. Rosemary does not have any friends and can be described as awkward. Now that she is a pre-teen her struggles in life are exacerbated. We rely on our family to help us provide the love and companionship that she needs. Her best friend is our Siberian Husky Ringo.
Today we are grateful to the many people who have helped us and empathized with us; we are especially grateful to God for the advancements in medicine that ultimately saved her life.
SOMETIMES KNOWING YOU ARE NOT ALONE IS HELPFUL
As John’s mother, I wanted to create a place to remind you that you are not alone. Although every story is different, there is power in sharing. Please share your journey, your experience, your resources and your information. E-mail your story to firstname.lastname@example.org.