It Takes A Village: Growing up with Cancer

Cancer. It's a word that strikes fear into the hearts of even the toughest among us. When most of us think of cancer, images of frailty, the dangers of chemotherapy, and looming death haunt our minds. For me this is not so. When I think of cancer, I am flooded with memories. Some of these memories are stronger than others, some are painful to reflect on, and many (possibly unexpectedly) are some of the happiest of my adolescence. My name is Caitlin and I am a cancer survivor.

I was diagnosed with brain cancer when I was eleven years old, spending my early teenage years in and out of my local Children's Hospital. At a time when all of my friends were beginning to experiment with makeup and learning to flirt with boys, I was undergoing multiple surgeries, radiation therapy, and learning to live with the reality that my life would never be the same. 

Cancer is a difficult diagnosis for all involved and in pediatric cancer cases, it can be especially difficult for family members. As I was still a child, my parents were tasked with arranging transportation to my daily radiation treatments, helping make me comfortable after treatment and surgery, waking up to take me to the ER at ungodly hours night after night, and constantly worrying whether their little girl would recover.  They did all of this while caring for my younger brother, working full time jobs, and living their lives at the same time. I say this not to bring pity to the situations we found ourselves in, but to point out that pediatric cancer treatment is especially stressful for more than just the patient.

I remember these years as being incredibly difficult, not just because of cancer, but because the effect cancer had on the dynamic of my family. I can only imagine the day-to-day stresses my parents faced when dealing with the "adults only" issues that come with cancer, such as finances and insurance battles. I can't fathom the confusion and hurt dealt with by my younger brother when he learned his only sister was sick, and that his life would be changing while the primary focus was on her. I also can't fathom what would have happened if we hadn’t have lived in Seattle.

Seattle is known to be at the forefront of cancer treatment, thanks in large part to amazing medical centers like University of Washington, Seattle Children's, and Fred Hutchinson Cancer Research Center. We were lucky that our almost daily trips to the hospital were a mere 30 minute drive, and even more so that my doctors deemed me healthy enough to stay at home for most of my treatment processes. My family was blessed in many ways during this time, but I know firsthand that so many others don’t have the luxuries afforded to us.

If a family lives in a region without a pediatric hospital they are often forced to uproot their lives and travel back and forth from their home state and the child's hospital. During one of my hospital stays I shared a room with a girl from Montana. Her mother had quit her job and taken on the role of full-time caretaker, while her father lived back in Montana, working full time, taking care of her siblings, and traveling to Seattle on weekends so the family could spend time together. Even when a child is "healthy enough" to receive in-home medical care, the workload is often so heavy for parents that the child will go back into the hospital due to stress. This girl I shared a room with eventually passed away, living in the hospital, and without the final memory of her family being reunited in a medicine-free zone. Situations like this are why I support children's palliative care and hospice homes like Ladybug House.

Ladybug House was founded by a pediatric oncology nurse in Seattle. Coincidentally, Suzanne Gwynn was a nurse at Seattle Children's during my own treatment and surely crossed paths with my family years ago. After years of watching countless families deal with the unimaginable suffering and loss of their children, Suzanne began to envision a solution: a home-away-from-home where the child can receive the medical support of a hospital, but comfort of a home; a place where families and parents can be cared for, not caregivers.  It will be the nation's third pediatric palliative care home and hospice for children and their families.

As a country, we talk about "Cancer Awareness" often. As a cancer survivor, I know the things we don’t talk about are equally important. I am grateful that increased awareness has reduced stigmas surrounding various cancers, and believe it is now time to increase our awareness about things we are more hesitant to talk about: familial well-being, quality of life, and end-of-life care for children. Offering support in the form of a palliative care home is not just a good idea; it's a social responsibility. Currently there are only two such houses in the United States, while there are over 3,200 for adults, and over 400 for our pets.

I realize the topic of pediatric hospice may make many of you uncomfortable, but I ask that you take a few minutes to look further into the Ladybug House mission. This is not just about end-of-life care; it is about the extra layer of support for exhausted parents, space for forgotten siblings, and unique opportunities for kids to be kids. Communities will be strengthened and legacies will be made and remembered. At Ladybug House, everyone involved will be able to celebrate every day. This is not something we as a country want to talk about, but it is a conversation we must begin to have.

If you support the mission of Ladybug House or know someone who may, please consider donating to help them build their first facility in Seattle: I also realize that many of us are not in a position to lend financial support. If this is the case, please consider sharing this blog post or the link to the Ladybug House website with your social media friends or email contacts. It takes a village to raise a child with cancer, and it takes a village to raise awareness about important causes. I am thankful for my village every day.

Charlee Van Wagenen