On January 20, 2015, eight words changed our lives forever - “Your daughter has a mass in her brain.”
Sophia is now 5 years old and has been in treatment for an inoperable low grade glioma for half of her life. She has endured 80 chemo infusions of three different regimens. She has had 8 surgeries and over a dozen MRIs. Countless hours of occupational, physical and speech therapy. She has three different foreign objects embedded in her body (a VP shunt, a port and a puberty suppressing implant). She has optic nerve atrophy and has lost her vision in one eye.
And yet, she smiles. She's growing. She makes us laugh. She has taught us about strength, attitude and endurance. We are so grateful we have her here to fight with and for.
We know we have been lucky. The harsh reality is that fifty percent of the children who have a brain tumor lose their lives. We have made deep friendships at the hospital, only to have those precious children ripped away from this world. We also stand witness to the struggles that survivorship entails - the kids who arrive on the other side of their initial diagnosis, only to face an uphill battle, as they navigate the multitude of handicaps, caused by the very treatments that saved their lives. We can do better. We must do better.
We have so many questions and there are so few answers. This is due mainly to a severe lack of research funding. When people become aware of the critical circumstances these children face every day, we know the tide will turn.
As Sophia was taken into emergency surgery to save her life that first night, our pediatrician told us, “There will be good that comes out of this. You will learn how loved you all are.”
Truer words have never been spoken. As the word spread about sweet Sophia’s diagnosis, the love came flying at us and it has only grown over time. Our community celebrates each victory with us and carries us during the tough times.
What we didn’t (and couldn’t) know, is that diagnosis is just the beginning. It comes in waves, kind of like sinking in quicksand. There are pauses where everything stops and seems like it may be okay. Then, a sudden shift and we find ourselves sinking again. Each time the sands feel like they will swallow us whole, there they are - our community, holding out a guide rope so we can surface and rise.
Our community’s efforts have been varied and we really know how to throw a great party! We have partnered with Donna’s Good Things and Chiaravalle Kids Conquer Cancer, raising big bucks during four different Brave the Shave events. Our friends at M Burger created the Sophia shake and donated the proceeds for an entire month. Through online voting, Team Z for Phi earned $15,000 from Harlequin Publishing. Other organizations who have partnered with us to throw “Parties with a Purpose” include Hewn Bakery, Little Beans, Andy’s Frozen Custard and Emerald City Theatre Company.
Together, we have committed to having fun while making a real difference for all the children, by funding research into less toxic treatments so our children can survive and thrive!
We can do this. We must do this. Your dollar may be the key to unlock the answers we so desperately need.
Thank you for joining Team Z for Phi!
Donations given to the Team Z for Phi fund go directly to the St. Baldrick’s Foundation to fund lifesaving childhood cancer research around the world. The Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.
These people make us smile - they’re the doers and money-raisers on behalf of the Team Z for Phi Fund. They’re shaving their heads, hosting events, starting fundraisers and more to make childhood cancer research possible.
Start your own St. Baldrick’s head-shaving event to raise money on behalf of our Hero Fund! You’ll be paired with a staff member who will walk you through every step of the process, and you’ll have fun knowing you’re doing a great thing for kids with cancer.
Register to shave your head and raise money for our Hero Fund at any St. Baldrick’s event happening around the world! Not finding an event near you? Register as a virtual shavee and shave your head anytime, anywhere.