We had a better chance of winning the lottery
is anesthetized to keep him from moving during the brief procedure, which aims to slow the cancer’s growth.
Surgery is not an option because of the tumor’s location in the pons part of the brain stem. Even if surgeons could access it, a DIPG mass is not well-defined — its cells spread out among healthy ones. “Like shaking a can of soda,” Mrs. Bandavanis said. Typical chemotherapy also hasn’t proved effective against DIPG, as the drugs can’t easily penetrate the brain’s blood barrier.
“Clearly, what we’ve been doing for decades hasn’t had success,” said Jenny Mosier, of the Michael Mosier Defeat DIPG Foundation in Bethesda, Maryland. “We need more that’s outside the box and that’s new.”
Mosier and her husband, Mark, started the foundation after their 6-year old son died from DIPG in 2015. The organization works to raise awareness and money for research, and gives families an online platform to honor their children.
Choosing whether to stop treatment and focus on high-quality time, or to join a clinical trial and pursue experimental medication, “is a terrible position to be in,” Mrs. Mosier said.
She and her husband found a trial for Michael nearby in Washington, D.C. that included an experimental drug in combination with chemotherapy. Because there aren’t a lot of options, even nationwide, families increasingly consider treatment abroad, Mrs. Mosier said.
“Kids are affected all over the world,” she said. “I wouldn’t fall into the trap of thinking that the only answers have to come from the United States.” Much of the research for DIPG biopsy methods, for example, started in France.
Whatever a family’s decisions, certainty can be elusive. “My son was in a very deteriorated state,” Mrs. Mosier said. “I would have made the deal any time to take less time if he was feeling well.”
But wishes, love and medical science create potent dreams.
“There are some stories out there of longer-term survivors,” she said. “You understandably hope that your kid will be one of those.”