At the news of Lauren Hill’s passing this morning, we were deeply saddened at the loss of a local hero. We wanted to take a moment to remember her and to share a piece from November (originally posted Nov. 3, 2014) about Hill’s passion for basketball and the cancer she courageously battled.
Before Hill died, she set a goal to raise $2.2 million for The Cure Starts Now, a foundation which receives donations for DIPG research. If you want to make a donation in her honor, you can do so here. Thank you for inspiring us, number 22 and teaching us all to never give up.
By now, you’ve heard the plight of Mount St. Joseph basketball player Lauren Hill, a story both terrible and inspiring. Hill, 19, from Lawrenceburg, Ind., played only 47 seconds of the Mount’s season-opener on Sunday at Xavier’s Cintas Center. But those 47 seconds and the weeks and months leading up to that moment will have a much larger impact on others at risk for Hill’s rare form of brain tumor.
According to ESPN, “10,000 people, including professional athletes from the WNBA and NFL as well as local celebrities, packed Xavier University’s Cintas Center arena not because Hill is dying or because she wanted to suit up for one collegiate game while she still has the strength. No, they flocked to Cincinnati because she made this game — and her fight — about something bigger than herself.”
It was likely the only chance she’ll have to wear her number 22 jersey and play in front of a crowd, but that is not stopping Hill from raising awareness about Diffuse Intrinsic Pontine Glioma (DIPG).
She also issued the #Layup4Lauren Challenge on Wednesday, October 27. Since then, two Bengals, Andy Dalton and Andrew Whitworth have accepted her challenge, and many other professional athletes, including WNBA players, and fans alike have followed suit.
Hill was diagnosed last November, just weeks after her 18th birthday, with a Diffuse Intrinsic Pontine Glioma (DIPG), a brain tumor that is generally found in children. It’s rare for adults to get the diagnosis, although another Cincinnatian with DPIG, 24-year-old Brendan Kelly, bonded with Hill before he passed away last March. Whenever the diagnosis comes, little can be done in either case as research has been limited. Information for patients and their families is also hard to come by, which is why Hill has battled her symptoms to use what time’s left to raise DIPG awareness.
“Nobody should have to go through this,” she told the Associated Press recently. “Nobody should be told their child has a limited time to live.”
Here’s what’s known about DIPG, and sadly, what remains unknown:
What it is: DIPG is a tumor found in the pons, part of the brain stem in the lower back of the brain, just above the spinal cord. The fast-growing tumors are found throughout the glial tissue that protect the brain’s neurons. Because the tumors are dispersed in that tissue and it’s found so close to the brain stem, which controls so many vital body functions, treatment is difficult. Surgical treatment is nearly impossible.
Who is diagnosed: DIPG primarily affects children, with most cases diagnosed between the ages of 5-9. It accounts for 10-15 percent of all brain tumors in children, with between 100-150 new cases diagnosed in the U.S. each year. Worldwide, only 400-500 new cases are reported annually.
The fact that children comprise almost all cases is particularly tragic, because fewer than 10 percent of patients survive more than two years after the initial diagnosis. There is no known cause and no known risk factors.
DIPG effects: Because DIPG is so rare, symptoms are usually the first clue that they are present. They are also diverse. The most common include rapidly developing problems controlling eye movements, speech and swallowing, due to problems with the cranial nerves. DIPG patients also often exhibit weakness in their extremities, which lead to problems with walking and coordination. Like Hill, others also suffer from intense pain that comes and goes from day to day.
Treatments: Radiation therapy is the primary treatment for DIPG, though its effects tend to be short-lived (lasting between six months to a year). Chemotherapy is also used, but routine chemotherapy drugs have shown in clinical trials to be largely ineffective. Studies are under way to change radiation doses and new chemotherapy drugs, but few have shown much promise to date.
What you can do: The Cure Starts Now, a foundation set up after the 2007 passing of 6-year-old DIPG patient Elena Desserich from Wyoming, Ohio, collects donations to fuel DIPG research. To donate, mail checks to The Cure Starts Now, 10280 Chester Road, Cincinnati, OH 45215, or visit www.thecurestartsnow.org.
