My Inspiration to Passionately Pursue Change

On September 17, 2007 we had the sitcom life. Two beautiful daughters, two dogs, a 2 car garage, an invisible fence, and loving family and friends surrounding us. On September 18th, a lesion was discovered on Colleen’s right femur and our lives were profoundly and irreversible 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 1st we were told that Colleen’s cancer had metastasized to her lungs and to “distant bone”. The bone scan showed suspicious areas in her left knee, her pelvic bone, her spine, her right shoulder, and on a rib. The doctor went on to explain that “she would likely succumb within 9-12 months”. It was unfathomable. Was he saying there was nothing they could do? How is this possible?
I will never forget that awful day when the doctor used that horrible word “succumb”. 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 down beside us and simply said “Having a bad day?” He introduced himself as Dr. Dan. He was the Child Psychologist. He answered our questions about what to tell Colleen and how to answer her questions. He predicted how Mackenna would react, the questions she would ask and made recommendation on how we should answer. Over the next couple of months, Dr. Dan visited Colleen every day. They developed a wonderful rapport, as did we. He was there for her and for us. It was priceless.

Immediately after her diagnosis was confirmed, the doctors kicked it into high gear and did not waste any time getting her started on treatment. They explained that bone cancer is very painful and chemotherapy will make her more comfortable by hopefully killing the tumor and curbing additional growth of cancer cells. A port-a-cath needed to be placed in her chest to deliver the chemotherapy. Many scary procedures for an 8 year old girl had to happen very quickly. That is where Child Life Specialists come in. Carolyn, a Child Life Specialist brought Colleen a sock monkey. Carolyn guided Colleen in "operating" on the sock monkey to place a port-a-cath into the sock monkey’s chest. Then they took a field trip to the radiation department to take an x-ray of the monkey to see what the port-a-cath looked like on film. While in radiation, they just happen to take some films of Colleen’s chest to prepare for the procedure. Carolyn visited with Colleen regularly, engaged her in play therapy while developing a relationship and the opportunity to discuss her fears and anxieties about what was going happening.

Then there was Shay. Shay was 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 you 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. We ended up practically living at the hospital, seeing these parents, night and day, at the worst times of our lives. The peer relationship was often our best support. I had some wonderful conversations at 2am in the hallway when I couldn’t sleep or something bad was happening and I needed support from someone who had walked a similar path.

In December, we took Colleen to MD Anderson Cancer Center in Houston. More tests were run and it was determined that the cancer had spread to every growth plate in her body. Dr. Anderson had a successful collaborative relationship with the Chief of Pediatric Oncology at a different hospital in our area and convinced us that Colleen did not have to stay in Houston to get the medical care she needed.

We returned and began a new treatment at a different hospital. How fortunate are we that we live in the city of medicine? We have such excellent medical facilities just miles from our home. This was a blessing. 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. When I found out that it wasn’t a lack of referral but a lack of funding and/or priorities, I wrote a letter to the Chief of Pediatrics and copied everyone I could find including the President and CEO. I wrote this letter in January 2008. A meeting was called and we talked but now it has been 18 months and nothing has changed. They did not emotionally or spiritually support Colleen and they are not emotionally or spiritually supporting any of the other children with cancer that come through their doors.

Colleen died on June 9th, a year ago today. Colleen had asked me several times if she was going to die and my answer was always the same. “The doctors and nurses are doing everything they can to help you and you have to do everything you can do too. We will always be honest with you and tell you what is happening. If we ever reach a point where the doctors and the nurses can’t help you anymore, we will tell you.” A couple of weeks before Colleen died, the doctor told me that it was time to tell her. 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 offered 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 this area of support are doing so through donor funding. Sadly, insurance companies do not easily pay for this type of support. In fact, the other local hospital that Colleen was being treated at has lost some of their grant funding and their support services have suffered as a result. I sadly learned that this is problem is wide spread.

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.

Thank you to everyone who has supported us through the darkest time in our lives. 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.