This is the first of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
This is Donna, my beautiful daughter, named for her grandmother, my mother, who died of a brain tumor when I was pregnant. So many Donnas, so many brain tumors.
Donna was diagnosed with papillary meningioma, an aggressive brain tumor on March 23, 2007. She was 20 months old. We learned this after an emergency CT scan was done and within moments a doctor said the words, “There is a mass in your daughter’s head.” There is a mass in your daughter’s head. It bears repeating because with those words our lives changed: Just. Like. That.
In the two to three weeks leading up to diagnosis, we began to notice changes in our girl. She became moody, clingy, fearful, cranky. Her appetite diminished and walking became difficult. Donna was always what we called a “considerate baby.” She was patient with her older rookie parents and had a sweet disposition. Her personality and physical changes were concerning, but confusing, too — could they have been the onset of the terrible twos?
No. What we were seeing was the result of spinal fluid building up in Donna’s brain caused by the tumor growth. Hydrocephalus can be fatal and often is. Gratefully, Donna was admitted to Children’s Memorial in Chicago on a Thursday evening to fast track her for an MRI the next morning. But by six that next morning, Donna started vomiting and became unresponsive. Her last words to me, slurred, were, “Change your diaper, change your life,” something I would say to her often. She was rushed to the CT machine to determine what was happening. I now understand the word ‘stat.’
Minutes after the confirming CT, Donna was rushed into surgery to drain the fluid building in her brain. She was kept sedated over the weekend in the PICU and on Monday morning, bright and early, had her tumor resected. All looked positive, as the neurosurgeon believed she had removed it all, but a diagnosis would take weeks to come back. Even then, after Donna’s tissue was sent to Washington U. and Johns Hopkins, there was still some dissent amongst the experts. Without a clear diagnosis, and then such a rare one, a treatment plan was not easily identified. Watch and wait was the order of the month. Watch and wait.
After the initial ten day hospital stay, Donna returned home, but had several ER visits for mysterious fevers that resulted in hospital admissions. Infectious disease was called in, but the only thought was that Donna may have had a virus. Also possible was that the tumor that had been resected was in the left posterior fossa, where our temperature controls are housed in the brain. No one knew.
This picture was taken just minutes after we returned to our home from the initial hospital stay. Donna is still in her gown from the hospital and the dressing on her head is from the first surgery to relieve the pressure from the hydrocephalus. Our neurosurgeon used a dressing shaped like a heart. We heart you, Dr. Bowman. The relief in Donna’s face and posture was palpable as we carried her through the door. I say carried because after ten days in the hospital and the few weeks of decline prior to that, Donna had lost the ability to walk. Regardless, those were her books, her toys, her crib. Donna was home.
This is a photo of where the tumor was resected. The cut is called a “hockey stick.”