On September 17, 2007, my husband Vince and I had the sitcom life: two beautiful daughters (Mackenna, age 10 and Colleen, age 8), two dogs, and a two-car garage. On September 18, a malignant lesion was discovered on Colleen’s right femur, and our lives were profoundly and irreversibly changed forever.
Over the course of the next couple of weeks, our days were filled with doctors and tests. With each passing test result, the picture that was painted became more horrific. On October 1, we were told that Colleen’s cancer had metastasized to her lungs, and the bone scan showed suspicious areas in her left knee, her pelvic bone, her spine, her right shoulder, and on a rib. The doctor explained that “she would likely succumb within 9–12 months.” It was unfathomable. I dare say that was the worst day of my life.
At one point during that horrid day, a gentle man with a funny tie sat beside us and simply said, “Having a bad day?” He introduced himself as Dr. Dan, the child psychologist. He answered our questions about what to tell Colleen and how to answer both her and Mackenna’s questions. Over the next couple of months, Dr. Dan visited Colleen every day. They developed a wonderful rapport. It was priceless.
Immediately after Colleen’s diagnosis was confirmed, the doctors started treatment, and many scary procedures for an eight-year-old girl had to happen quickly. For example, they needed to place a port-a-cath in her chest to deliver chemotherapy. Carolyn, a Child Life Specialist, brought Colleen a sock monkey and guided Colleen in “operating” on the sock monkey to place a port-a-cath into its chest. Then they took a field trip to the radiation department to x-ray the monkey. Carolyn visited Colleen regularly, engaged her in play therapy, and gave her the opportunity to discuss her fears about what was going to happen.
Then there was Shay, the full-time chaplain in Pediatrics. She would stop in regularly to see Colleen and visit with us. In addition, there was a support group every week where we could have coffee with her and Dr. Dan and visit with some of the other parents. Establishing those relationships with the other parents was an important element. I had some wonderful conversations at 2:00 am in the hallway when something bad was happening and I needed support from someone who had walked a similar path.
In December, tests showed that the cancer had spread to every growth plate in Colleen’s body. We began a new treatment, this time at a different hospital. How fortunate we were to have highly regarded medical facilities just miles from our home. Colleen received excellent medical treatment. However, during her stay at this prestigious hospital, she was never visited by a psychologist or a pastor. The Child Life Specialist assigned to Oncology was expected to cover multiple pediatric units and barely had time to deliver DVDs and toys, let alone actually develop a rapport or engage in play therapy. Lastly, there were no peer support groups available for parents.
Emotional and spiritual support was nonexistent. At first, I thought that someone didn’t fill out the paperwork correctly. It was a shock that this private hospital could be lacking such obvious services. I found out that it wasn’t a lack of referral but a lack of funding and/or priorities, so in January of 2008, I wrote a letter to the Chief of Pediatrics and copied everyone I could. A meeting was called and we talked about how they did not emotionally or spiritually support Colleen, and they were not emotionally or spiritually supporting any of the other children with cancer who came through their doors.
Colleen died on June 9, 2008. A couple of weeks before she died, the doctor had told us that it was time to tell her that the doctors and nurses couldn’t help her anymore. I needed to tell her that we had to cancel her Make-a-Wish trip. I needed to tell her that the only way for her to feel better was to go to heaven and be healed. Even on this horrible day, we were not provided any support services.
After Colleen died and I began to feel called to address this need, I researched the issue. Eight out of the top ten hospitals that are excelling in emotional and spiritual support are doing so through donor funding. Sadly, insurance companies do not easily pay for this type of support. In fact, another local hospital that Colleen was being treated at lost some of their grant funding, and their support services suffered as a result. I sadly learned that the problem is widespread.
In my darkest hours, I sometimes cry out, “why us?” I wish I could answer that. It haunts me. For now, I just know for certain that God is leading me to passionately pursue the improvement of emotional and spiritual support for children with cancer. It is my prayer that Colleen’s tragedy will result in an increased awareness of this issue and, as a result, increased support for kids with cancer.
Diane Moore, Colleen’s Mom & Founder of Striving for More ~ June 9, 2009
