As I stood, frozen in place before my closet, I again asked myself, “What does one wear to a child’s funeral?”
I thought about the young man whose life we would celebrate, and chose purple, the color of half-mourning. It seemed right. Half of me is mad as hell that this beautiful soul has departed this life. My other half rejoices that Justin Miller is no longer suffering, and is now at peace. I am grateful Justin was sent to better us. It has been said that only the good die young, and this is certainly true of this ninja.
My best Christmas gift was delivered two weeks early. Our young Ambassador, Justin, left the hospital in time to participate in his school’s Winter Concert.
As Justin and his classmates sang, I thought about how he has miraculously fought cancer seven times, and how those miracles were possible because of another one.
Many members of the childhood cancer community are aware of daunorubicin, a chemotherapy drug that is used to slow or stop the growth of cancer cells. This generic sterile injectable drug is a first-line treatment for childhood acute myeloid leukemia (AML), and is also used in treatments for some types of acute lymphoblastic leukemia (ALL), the most common type of childhood cancer.
Teva Pharmaceuticals — the only distributor of daunorubicin in the United States — informed the U.S. Food and Drug Administration (FDA) that the drug is in short supply, and full production is not expected to resume until sometime next year. The company offered no explanation for the shortage and gave no specific timeline for restoring the drug to full production.
St. Baldrick’s Chairman Chuck Chamness, left, presents a platter to Chairman Emeritus John Bender in recognition of John’s three years of service as board chair.
As Chuck handed the platter to John and the two of them smiled for the camera, I thought about how much John Bender and his family have meant to St. Baldrick’s over the years.
As one of the three founders who began the event on St. Patrick’s Day in 2000, John and his bald head will forever live in St. Baldrick’s history. But that was just the start.
The government shutdown is impacting children with cancer. House and Senate members continue to debate while children with cancer, their families, and the researchers wait. Photo: Rachel Kemble Photography
The government shutdown may delay the opening of new clinical research studies funded by the National Cancer Institute (NCI), including studies being developed by the Children’s Oncology Group (COG), a cooperative network of more than 200 research institutions.
A short-term government shutdown is not expected to impact ongoing clinical trials, except potentially trials conducted at the NIH’s Clinical Center in Bethesda, Maryland.
Luck. When I was a kid, luck was about beating my brothers in a game of cards, getting the cereal box toy in my bowl, or getting the last ticket to a new movie. I didn’t know that I was lucky to simply be healthy; it didn’t cross my mind. I wore my innocence like a shield, believing my parents’ love and a kiss could heal anything.
We weren’t forced to live under a dark cloud, worrying every minute that cancer would spread, or reappear later, or that treatment would disable us, or worse, take one of us.
My family’s good health wasn’t the result of our parents doing anything different from any other parents. Our genes simply behaved.
Why were we so lucky when others were not?
I ask myself this a hundred times a day, but as science doesn’t yet know the answer, I pay it forward by finding a cure — not in a laboratory, but by using my own strengths and abilities to work for a cure. The fact that I can help conquer childhood cancers isn’t unusual. Everyone can.
Chuck with his son Joey, the first St. Baldrick’s Ambassador
September is Childhood Cancer Awareness Month, and over the next four weeks, it will be my privilege to share news of exciting new developments at the St. Baldrick’s Foundation. To share the first, let me take you on a short walk down “Memory Lane.”
In 2006, thousands of posters and brochures were printed and sent to events throughout the country bearing the smiling faces of Chuck Chamness and his son, Joey. At the time, Joey was in treatment for osteosarcoma, a malignant tumor of the bone, which had occurred in Joey’s leg.
We easily persuaded our rookie volunteer event organizer, Chuck to shave again – just as his hair had returned from his last St. Baldrick’s shave! This generosity allowed us to capture the poignant pictures of father and son which introduced Joey to the world as the St. Baldrick’s Foundation’s first official Ambassador.
Georgia was diagnosed with leukemia at the age of 10. Because of you, St. Baldrick’s is giving away $22 million in childhood cancer research grants to help find cures for kids with cancer.
For two weeks, she hadn’t been feeling like herself. The pediatrician thought she was fighting a virus, but as days passed, Georgia became fatigued, shaky, and pale. When her parents brought her back to the doctor she was sent to the hospital for testing.
The next day, Georgia was diagnosed with acute lymphoblastic leukemia — ALL, the most common type of childhood cancer.
But when Georgia’s mom shared this news with friends and family, she said something that caught my attention. She told them that Georgia had been diagnosed with ALL, a “very curable cancer of the blood.”
Georgia had cancer. But there was a cure.
A cure that was available because of childhood cancer research.
Today I want to tell you about something both exciting and troubling, and what we can all do about it.
Because of the success of St. Baldrick’s volunteers, as recently as 2008 we had enough money to fund every scientifically approved research proposal we received, and then some. We put the extra funds toward helping local institutions with the resources they needed to help make more clinical trials available for kids in their local areas.
These cuts could negatively impact the future for kids with cancer who are fighting today and those who will be fighting 10 years from now, unless we, as a community, come together and take serious action.
With a meager 4% of the National Cancer Institute’s budget directed to childhood cancer research, children with cancer are already the underdogs, and that was before the fiscal cliff loomed before us.
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