Posted: November 5, 2014
9 Weeks Old at Diagnosis
Scarlett Grace was born on October 16, 2010. She was healthy, growing, and seemed perfectly normal. Around 7 weeks old, we noticed a small bruise developing on her forehead; we figured we had somehow bumped her very fair skin, and it would heal. It didn’t. At 9 weeks old, we took her for her 2 month well-baby visit, intending to have the doctor look at the now-larger bruise in addition to all the normal baby issues. She was never a “well baby” again.
The concerned doctor ordered an immediate CT scan, which showed some sort of mass. We were sent directly to the emergency room to await transport to Lucile Packard Children’s Hospital in Palo Alto, CA. That night, an emergency MRI revealed a massive tumor occupied the entire left half of Scarlett’s brain. The bruise was caused by the strained blood vessels being forced against the skin by the tumor. A few days later, a biopsy revealed the tumor to be a glioblastoma mutiforme, a brain tumor commonly found in adults, but rare in children, especially in babies. We were told that treatment was not viable, that her life would be miserable, and that hospice would be contacting us. We were sent home to spend her first, and seemingly final, Christmas together.
The next week, we were referred to a second surgeon at Children’s Hospital Oakland. The surgeon took one look at the MRI, and told us we had to try. He would perform the surgery just after New Year’s; she was to be admitted by the end of the week.
Scarlett underwent two 12-hour surgeries to remove the tumor and reconstruct her skull over the now-open cavity. She was in the ICU for nearly three weeks, where she endured seizures, blood transfusions, paralysis, EEGs, MRIs, CTs and huge amounts of medication. She never lost her feisty spirit, and was discharged a few weeks later, tumor free!
She was set to begin chemotherapy at Lucile Packard in early February; unfortunately, she was admitted that day for a severe respiratory infection instead. She had her first dose of chemo on Valentine’s Day, 2011 and continued for the next 12 months, battling through all the typical chemo side effects, like hair loss, nausea, skin irritation, and low blood counts, all while teething. She was so sick, she stopped eating, so she had to have a naso-gastric tube for almost a year, and now has a gastronomy tube for feeding. At six months old, we learned that the early chemo had damaged her hearing severely, and she would need hearing aids and speech therapy.
Her fragile immune system opened her up to a shunt infection. The shunt was replaced, but was not quite right, so it caused her skull to collapse where the tumor had been removed. It could be repaired, but not until her immune system was strong enough to sustain many hours in surgery.
On Scarlett’s first birthday, we celebrated her amazing life by giving back; we held a blood drive through Stanford Blood Center to collect blood for other patients, who, like Scarlett, would have died without the kindness of donors. We collected over 100 units of blood while enjoying a polka dot birthday cake.
She finally completed chemo in February, 2012. We celebrated with a big pink cupcake for her! She has been tumor-free since January 2011, and has fought for every day since. She has been through 11 surgeries, including 8 hours to repair her skull in May, 2012; more than 100 days were spent in the hospital before her first birthday. She wears hearing aids, gets physical, occupational and speech therapy. She is beginning to stand up, says “mama” and “dada” and smiles all the time. Soon, we will celebrate her second birthday with another blood drive and another big cake. She still has MRIs every few months to check for any tumor growth, and we are constantly on the lookout for any late side effects from such aggressive treatment. She will likely need further surgery to continue correcting her skull, as well as continued therapy for the foreseeable future.
Despite these challenges, we are forever grateful to the doctors who took a chance on her, who looked past the statistics and helped save her life. We eagerly await the day when research will bring a cure, so that no more families have to go through what we have. She is the light of our lives, and we are looking forward to seeing all the amazing things she will do with her life.
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