July 14, 2006 is the most infamous date of my lifetime. This was the date, in which, a team of doctors from Ann & Robert H. Lurie Children's Hospital of Chicago (formerly Children's Memorial Hospital) told us that our daughter had a brain tumor.
She was 9 weeks old.
Surgery, a necessity, happened three days later. Pathology, three days after that. Inside of a week, our world had been rocked in the most dramatic way. Not only did Mattea have a brain tumor, but it was exceedingly rare, aggressive, and didn't often have mercy on those it impacted. This beautiful baby, born on time, and free of any complications, would now face the fight of her life. Literally.
Treatment options in 2006 for ATRT (Atypical Teratoid Rhabdoid Tumor) were limited, particularly in a child so young. We were given two:
1.) treat with systemic and intrathecal chemotherapy as well as focal cranial radiation per the recommendations of an open study out of Boston. We would do this only to gain time with her. The average life expectancy with treatment in 2006 was 6-9 months.
Or,
2.) Take her home and enjoy what time remained, avoiding unproven, and borderline ethical treatment protocols that would give no promise of any kind of future, or any kind of quality of life. The average life expectancy without treatment in 2006 was less than 3 months.
But we wanted time with our baby. We wanted to get to know her, to learn her, and to store as many memories of her as possible before she was taken from us.
So, we treated only to get time. 6-9 months is what we expected. And so far, 10 years is what we've received.
This year, that sweet, 9-week old Mattea is turning 10--her GOLDEN birthday. The little girl I thought I'd never see off to Kindergarten is now preparing for 5th grade. She has out-survived, and outlived any person's expectations. She is exceptional, and I am so proud to be her Momma.
In honor of Mattea's 10th birthday, I am going to shave my head for the 4th time, to continue bringing light to the extreme need in funding for pediatric cancer research. We must do better. For Mattea. For her brother Maddox, who battled the same brain tumor 5 years later. For every child with cancer.
In lieu of gifts at Mattea's 10th birthday party, we are asking for donations, in any amount, to support our most precious cause.
If you have any questions, please don't hesitate to reach out to me. Thank you!
