“We were caught off guard,” said her mom Kristi, “Before Olivia was diagnosed, we didn’t know any child who had it. I’ve been teaching for eleven years and I’ve never seen it. It was a shocking and devastating time.”

Childhood cancer is not one disease but rather a group of diseases. There has been a consistent trend in the increase of incidences of childhood cancer by .5% per year since 1975 with approximately 13,400 new cancer diagnoses under the age of 20. The most common form of childhood cancer is leukemia and treatment can last 2 – 3 years.

Incidences in childhood represent less than 1% of the 1,638,910 new cancer diagnoses expected for 2012. This small percentage does not address the number of years lost. The average age of a breast cancer diagnosis is 61. If treatment is unsuccessful, the number of years lost is approximately 16 years of life lost. For a child, the average age of diagnosis is 10. The years of life lost, per child, is 67 years.

Although childhood cancer is considered rare, it remains the second leading cause of death (surpassed only by accidents) and the number one disease killer of children in the United States. Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

To be sure, statistics are informative, but one child, with one cancer, is one too many.

Unbeknownst, Olivia’s tumor had been growing for a few months. She had been experiencing fevers in November and a few days later she was diagnosed with an ear infection. In retrospect, she may have seemed pale and a bit more tired but nothing that could not be chalked up to a minor infection. Throughout December, the same pattern, a fever and then a rational explanation. And then one day, her dad, Jesse, picked Olivia up, and he could feel a lump in her abdomen. A trip to the doctor with a quick referral to Providence Sacred Heart Children’s Hospital emergency room revealed the shocking and devastating news that Olivia had cancer.

“As we waited for the confirmed pathology reports, we kept hoping it was a mistake.” But it wasn’t a mistake. “We were bowled over by this threat that was attacking our child.”

Once admitted to the pediatric oncology unit, the Allens saw that they were not alone. Locally, there are approximately 45 – 50 children diagnosed with cancer with about 100 – 150 on treatment and follow-up care.

“[The Family Care Kit from ACCOIN] was so helpful. We didn’t know how to talk to our 5 year old and the materials really helped us to be able to break it down for her. The tools included in the binder and bag really helped us feel like we had a handle on the chaos. We appreciated that the kit wasn’t just for the moment. It was for the beginning, middle, and long-term. It was so great to have others tell us what we needed: You need to eat, you need to shower (I was never so happy to see toothpaste), you need to write down your questions. Your brain is on vacation and you really don’t know what you need.” There are over 35 years of parent feedback that make up the family kits. With funding from our partners at the Rypien Foundation we have been able to include DVD players and other extras to enhance these care kits.

“We were really fortunate to receive the overwhelming kindness of so many people who did so many things to reach out and help our family. It strengthened us. My husband and I realized very quickly that this was bigger than us. From our amazing oncologist, Dr. Trobaugh, the incredible and dedicated team at Sacred Heart Children’s Hospital, organizations like ACCOIN, our friends and family who took care of our home, our coworkers who donated sick leave, and complete strangers who came forward to help, we knew we were loved and supported and that we could get through this. Everyone may not understand what we were experiencing but everyone, especially parents, understand fear.” Childhood cancer is a very real threat. Approximately 2500 children each year do not survive.

Childhood cancer robs you of the life you once knew. Initially, Kristi refused to let cancer rob her of normalcy. She did not want to let the cancer win. But soon she came to surrender to the fact that childhood cancer would rule their lives for a while. Coping with childhood cancer involves quickly understanding what you can and cannot control. Childhood cancer may demand attention, but they decided early on that they needed to take a larger view of what was happening to their family. Olivia’s treatment protocol was much shorter (but no less intense) than some treatment protocols. She just recently had her portacath (a device implanted into the chest to deliver medications directly into the blood stream) removed, signaling the end of chemotherapy treatment. Kristi is looking forward to heading back to work soon.

With the losses that childhood cancer brought, there have also been some gains. “We know that it will be 5 years before we will hear the word ‘cure.’ As a parent, you don’t just do chemotherapy and walk away. It lurks in your brain knowing you cannot control it. I was a planner. I thought I could control life as long as I laid out a plan. I had the illusion that I could keep my kids safe by doing all the right things.”

Sometimes there are positive lessons that emerge: “Now, I am way more relaxed and not nearly as controlling. We used to talk about family vacations and always put them off. Now we know that our family vacation needs to happen now.” A lot can happen in five years. A lot can happen in a day. Their eyes were opened to a world they did not know existed and they know that their world view has forever expanded. “You can’t walk onto a [pediatric oncology unit] and not be changed. We’ve learned to appreciate this moment.”

As time goes on, Kristi is looking forward to not always waiting for the other shoe to drop. She is looking forward to not having her conversation dominated by childhood cancer. She knows that it will always be a part of her and her family’s life but she is looking forward to incorporating the lessons learned into a forever altered and wider worldview.

Olivia lost the ability to walk due to her treatments and worked extremely hard to regain that ability. “I want her to know how supported she was.” Five year old Myah has gained an advanced maturity. She had to forego dance and preschool but gained a close relationship with her grandmother who was living out of the country and came to stay and care for her. That would not have happened.

As life moves forward for the Allens, they also know that the very treatments used to save Olivia’s life are not risk free. Children with cancer are receiving toxic treatments at a time while their bodies are growing and developing.

Approximately two-thirds of childhood cancer survivors will experience at least one late effect and about one-third will experience a late effect that is severe or life-threatening. Time does not lessen the risk of developing long-term complications which is why it is important for children (and into adulthood) to be followed through a late-effect clinic. For more information on Late Effects and additional resources for childhood cancer survivors, click here.

As a community, it takes all of us doing our part to support families like the Allens. We hope you join with us during Childhood Cancer Awareness Month and throughout the year. Click here and find out what you can do to help.

Statistical information obtained from American Childhood Cancer Organization, Cancer Incidence and Survival among Children and Adolescents:United States SEER Program (1975-1995) NCI; Cancer Facts and Figures 2012 ACS