Isaacs help each other cope
Ivory Isaac, 9, gets a kiss from her mom, Julie. Ivory was diagnosed with stage 2 ependymoma when she was 4, and now she and her mom work to raise awareness about pediatric cancer to help other children. September is Pediatric Cancer Awareness Month. Buy This Photo
Ivory Isaac, 9, is in pain much of the time because of a form of brain cancer that was diagnosed more than four years ago.
Although in remission now, the Northland girl still sees 13 specialists on a routine basis due to complications from treatments and procedures that extended her life.
The other day, to ease Ivory's suffering, her mother placed her in a warm bath.
"I'm sorry you're hurting," Julie Isaac murmured to her daughter.
"Mom, at least I'm here to hurt," was the reply, and Isaac once again was struck by the remarkable pluck with which her daughter has faced an ongoing ordeal.
September is National Childhood Cancer Awareness Month.
Isaac, 35, wants more people to be aware of what children and their parents face in the wake of a fateful diagnosis.
"As most of us would, I avoided the word cancer at all cost," Isaac wrote in an account of what life has been like since Jan. 8, 2008. "I thought if I don't think about it or say it, it will not happen to my child. I wanted the best for her. I knew as her mom she would never personally be touched by cancer. Her body was off-limits.
"Little did I know that her body had the cancer already there, waiting for the right time to grow. Now, with my daughter being 9 years old and four years out from diagnosis, I yell the word cancer and do everything I can to get others to listen to us."
"Ivory has gotten me through this," Isaac said in an interview last week. "She tells me every day that God has a plan for us. His plan is: I have cancer and help others.
"You have your moments when you cry, but you just try to think, 'This is the plan, let's move on.' "
Ivory was found to have childhood ependymoma after several emergency room visits for headaches, vomiting, blurred vision and numbness -- symptoms that could have been caused by any number of health problems, her mother said.
Childhood ependymoma is a disease in which malignant cells form in the tissues of the brain and spinal cord, according to the website of the National Cancer Institute.
Less than 48 hours after the diagnosis, Ivory underwent surgery at Nationwide Children's Hospital.
"How do you tell a 5-year-old that she needed surgery, much less explain that it was a brain tumor/cancer?" Isaac wrote. "I was allowed to go to the pre-op with Ivory before her pre-surgery MRI and surgery. I was not allowed to stay with Ivory as she went to sleep. I was pushed out and the last words I heard her say were, 'Please don't cut on me.' It was 14 hours later that I was able to see my daughter again. I wanted to hold her and hug her but I was not allowed to pick her up."
Many problems developed for Ivory after the surgery, leading to a lengthy period of time in a coma and an incident of multiple organ failure, according to her mom's account.
"She had tubes coming out of her body everywhere," Isaac wrote. "The odds were against her to live, they told us."
Ivory beat those odds, and continues to beat them, although the operations, procedures and treatments took a toll that the little girl is still dealing with today.
"Four and a half years later, she still suffers from the side effects of the surgery and treatment. She sees many specialists and takes more medicines every day to stay as healthy as she can. She has pain on a daily basis but she deals with it with a grace and faith."
Joining a support group for parents of children with cancer has helped Isaac cope, as has starting a Facebook page for those whose children have developed ependymoma.
"We try to help each other through this," Isaac said in the interview. "It's amazing how you can gain strength from other parents going through this.
"I have hope that there's going to be a cure for the cancer, and if it comes back, it's going to be at the time when the cure is found," she added. "But we live every day as if today was the last day. We laugh and have fun as much as we can. We kind of take it both ways."