Patient Story

Jonathan Cook

"They thought of things we wouldn't have thought of, like letting us hold him for as long as we wanted, giving him a bath, taking a picture."

Jonathan and his family, including his mother, Cindy, his father, Ray and brothers Jacob, Evan, and Nathan.

Born with severe birth defects, Jonathan Cook wasn't expected to live to see his first birthday. But Jonathan was a fighter, and defied the odds. He loved water, had a beautiful smile, was very social and learned to army crawl to get around. 

Still, Jonathan was fragile, and was hospitalized 35 times in his first two years. His bones broke easily and he was prone to infections. At age 5, he again was hospitalized and doctors said he needed to be put on a ventilator or he would die.

"We decided he was so full of life, he wouldn't want to be hooked up to tubes," said Cindy. "We decided to take him off life support. But Jonathan never did what doctors said he would do, he had his own agenda. He breathed on his own and kept getting stronger."

While he was in the hospital, the lung specialist suggested palliative care.  The Cooks initially balked.  "We thought it was hospice, and we said no - we didn't know what to expect," said Cindy.  "But Dr. (Ileana) Leyva, the palliative doctor, came to our house and explained it was more of a support, that it was not about the end of life. It was a lot about us, what our wishes were, and our feelings about Jonathan."

The Cooks agreed to palliative care. For the first few days after Jonathan came home from the hospital, it was touch and go. For three days Jonathan received around-the-clock nursing care at home. But again Jonathan got stronger and stronger, so much stronger that he ended up receiving palliative care for five years.  The Cooks were told that Jonathan wouldn't live to adulthood, and he died at the age of 10.  But Cindy said they were thankful for every year they had with him, years that she said were more enjoyable because of the palliative care they received.

Jonathan and his mother, Cindy

The nurse from Chicagoland area Seasons Hospice and Palliative Care came once or twice a week, checked his vital signs, brought pain medicine and other medication and equipment.  Jonathan got a sore from the cast for a broken leg, and the Cooks would call the palliative nurse, who came immediately if Jonathan needed care for the sore or anything else. "We had peace of mind knowing we were only a phone call away from help," said Cindy. "They really cared about him."

In the meantime, Cindy and Ray had twin boys and six months before Jonathan died, a fourth son. Cindy said she loved how the palliative care team included them in Jonathan's care, such as physical therapy and music therapy. "He loved when the music therapist came, he'd move his head a little bit," said Cindy.  The palliative care team made sure Santa visited every Christmas.  They did a casting of Cindy's hand holding Jonathan's.

"When the palliative doctors came, they would stay for an hour or two and we would talk about Jonathan, our families, the other kids," said Cindy. 

At 10, Jonathan ended up in the hospital, and this time, he couldn't pull through.  The palliative doctor "was there at our side. She stayed with us, sat outside while we held him.  The palliative team thought of things we wouldn't have thought of, like letting us hold him for as long as we wanted, giving him a bath, taking a picture. I was going to bury him with a quilt my mom made, but the palliative doctor said to think about it, because once it's gone, it's gone. I'm glad I rethought it because I'm glad I have it."