The Carousel Fund celebrates 25 years of helping families cope with severely ill children
There's an inconsolable sense of fear and helplessness that grips parents when their child faces a medical crisis, and it's a feeling Glen Stewart and his family experienced when his daughter, Ella, came down with a mysterious illness.
"In May of 2010, she started to get sick and was throwing up in the mornings," said Stewart, a former Petaluma resident. "She really had no appetite. This went on for a month or so. The doctor thought she might have acid reflux and put her on medication for it."
When Ella, age 6 at the time, failed to get better, a closer examination discovered that she was suffering from a rare form of brain cancer. To make matters worse, the cancer was growing on her brain stem, making its removal risky.
"It's a very difficult surgery to do," said Stewart. "They usually don't remove the whole tumor because they don't want to get too close to the brain stem in order to avoid doing permanent damage to it."
Ella's surgery at Kaiser Medical Center in Oakland lasted 14 hours, and four hours after surgery doctors found she had a hereditary blood-clotting disorder.
"She wouldn't stop bleeding," said Stewart. "She went back into surgery two days later to open up the tumor bed and relieve pressure. Everything bad that could have happened, happened."
Ella never woke up after surgery and was in a coma for the next three months. Her family, which includes her mom, Alycia Madden, step-father Mark Madden and step-mother Deborah Stewart, rallied around Ella in hopes she'd pull through soon. The challenges of paying the bills while not working, however, quickly began to take its toll.
"We intended to be down at the hospital for a few weeks, then go home and have her do rehab," said Stewart. "We had all taken time off work, but after a month we were running out of money and really didn't know what to do. We had no idea how long she would be in a coma so we couldn't make plans or tell our employers when we could go back to work."
A glimmer of hope came from a friend, who told Stewart to call Arnie and Susan Cohen, founders of the Carousel Fund, a Petaluma-based non-profit that provides financial support to families of children suffering from life-threatening illness.
Not knowing what else to do or what to expect, Stewart made the call.
"I must have sounded so distraught in my message," said Stewart. "Arnie called back in half-an-hour and we talked. The first thing he said was &‘Don't worry. We'll take care of it. Put it out of your mind and let's move on to what we can do to put you in touch with other people who have been through this with their kids.'"
Toward the end of Ella's coma, Stewart said he was beginning to lose hope. Ella's health insurance was preparing to drop her because of pre-existing conditions.
"That was about the time that President Obama's health care plan kicked in," said Stewart. "Under the new plan, we were able to switch to a new insurance provider and transfer her to UCSF Medical Center in San Francisco. It was a godsend that happened. Toward the end, though, it didn't look good for Ella and doctors began telling us we would need to have a conversation about her future. I was starting to get resigned to that happening."