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, “she would likely succumb within 9–12 months.”
It was unfathomable. I dare say that was the worst day of my life. And it would be followed by a similarly harrowing 8-month journey for Colleen and our family. During that time, we interacted with three primary hospitals and learned firsthand just how inconsistent and inadequate our nation's pediatric oncology wards were at providing the emotional and spiritual support these children so desperately needed. Early on, we received some of the best psychosocial care one could hope for. But later, we were faced with such a dearth of emotional and spiritual support; it made what was already a nearly unbearable situation considerably worse.
At one point during that awful day of Colleen's original diagnosis, 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 incredibly important. 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—one at which, tragically, the psychosocial care offered couldn't have been worse. We were so fortunate 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 seen by a Pediatric Psychologist, she was never seen by a clinical social worker or therapist, she was never visited by any type of hospital clergy or pastor, there were never any support groups offered (for her or us), and the Child Life Specialist was spread so thin between more than a dozen pediatric departments, she barely had time to deliver toys and DVDs, let alone perform the work that Child Life Specialists are trained to do with critically ill children.
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 this wasn't due to a lack of referrals, but rather 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. Regrettably, insurance companies do not easily pay for this type of support. In fact, another local hospital at which Colleen had been treated 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
Note: Colleen's entire journey has been documented at the family's CaringBridge site. This is a detailed account of the family's experiences during her illness. Feel free to take a look if you are interested in reading more details.