Scarlett Grace was born on October 16, 2010. She was 6 pounds 7 ounces and 21 inches long. We call her butterfly, among other things. She had two uneventful, normal months. She was feisty and noisy, hitting all her milestones and developing on schedule. Then, at her two month Well Baby visit, everything changed. She had a small bruise on her forehead that we had no idea how she had attained. This quickly caught the doctors' attention; a examination of her head led to the discovery that her fontanel was swollen.
She sent us for a CT scan. When we returned to the office a few minutes later, she said "Something is wrong with her." On the CT scan, she said, there was some signs of bleeding in her brain. We were sent to the local emergency room, and then Scarlett was transported by ambulance across the bay to Lucile Packard Children's Hospital at Stanford.
|You can barely see the small bruise above her |
left eye. This picture was taken a few days before
the doctor's appointment.
|The loud CT machine lulled her to sleep.|
We met her in the Pediatric Intensive Care Unit. There, they performed an MRI late at night. The next morning, the head of pediatric neurosurgery came to discuss the results with us. He showed us the scans of our daughter's brain. Despite our lack of medical experience, we could see there was something wrong with the pictures we were being shown.
|Her first MRI. The pink line shows the outline of the tumor. The blue line shows the midline of the brain, which divides the right and left hemispheres and should be centered.|
He explained that Scarlett's brain was being smashed to the side by a large tumor. It was about 10cm x 7 cm (or 5 inches by 3.5 inches; the size of an adult fist.) It was there when she was born, and nothing we did or did not do caused it. He explained that there was little to be done, that hospice was available.
On December 22, 2010, a biopsy was conducted by removing a small portion of the tumor from under her skull. The official diagnosis was congenital glioblastoma multiforme. Glioblastoma is common and deadly in adults. It is incredibly rare in children, occurring in only a handful of births each year. Few of these children survive after birth.
After the biopsy, we were sent home. We celebrated Christmas as normally as we could.
Just after Christmas, we met with the pediatric neuro-oncologist. He knew we had been told the worst outlook. He urged us to get a second opinion from another neurosurgeon at Children's Hospital in Oakland. We drove directly there, and were given hope: surgery was an option.
Scarlett had her first surgery on January 5, 2011. It took more than 12 hours and removed about 75% of the tumor. A few days later, on January 14, another 12 hour surgery removed the remainder of the tumor. She was in the hospital for almost 4 weeks. In that time, she battled seizures, paralysis, blood loss, bad IVs, strong steroids, and other challenges. She could not be held for almost a week. But, after her second surgery, she rebounded quickly and strongly. We were discharged January 24, 2011.
Even though the tumor was gone, the cancer was not. She underwent chemotherapy at Stanford. Her first dose was delayed by a serious case of RSV, but she again fought back. The morning of her second chemo dose, we had a follow-up MRI, which resulted in a shunt surgery.
In April, she started to have high fevers, so we went to the emergency room, and then were admitted to the hospital for a ventricular infection. Her shunt was first externalized, then removed. The infection, in combination with the antibiotic used to fight it and the chemotherapy, caused moderate to severe hearing loss. Scarlett was fitted for hearing aids in July.
She completed 6 months of intravenous chemotherapy in July, 2011 and her final 6 months of oral chemotherapy in February, 2012. In May, 2012, she had her skull reconstructed after it collapsed due to a failing shunt.
Scarlett has had 12 surgeries all together, including feeding tube placement, port catheter placement and removal, skull reconstruction and several shunts. She gets physical, occupational, speech and hearing therapies weekly.
Two weeks after her second birthday in October 2012, we learned that a new tumor has begun to grow in her brain. On December 12, 2012, the new growth was removed. Scarlett will begin a new chemotherapy regimen in January 2013.
We don't yet know what the future will bring for our little girl, but we know that she is strong, and we will continue to fight.