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Sincerely, A Family Affected by Childhood Cancer

Most girls entering their senior year of high school are worried about college acceptance letters and finding a date to homecoming. Vanessa Nielson, my aunt whom I never had the privilege of meeting, was coming to terms with her diagnosis of Ewing’s Sarcoma (a rare cancer that grows in and around bones). This is her story, and tips for helping a family who is going through a childhood cancer journey.

Vanessa was a popular high school cheerleader. She was beautiful, highly motivated and smart. One day her hips started hurting. Her parents and doctors assumed the pain was associated with cheerleading stunts. They became concerned, however, when she was suddenly unable to walk. After unsuccessful X-Ray’s and physical therapy, a CAT scan revealed the problem. There were 5 “hot spots” on Vanessa’s scan; a 17 year old girl had a tumor in her abdomen that had already metastasized to her hips, spine, and head.

My grandmother still remembers Vanessa’s words when she finally understood the heart-breaking implications of her diagnosis: “Kids aren’t supposed to get cancer.”

She was right. No family should ever have to go through their child fighting cancer. But many do, and here is how you can help them.

Things that families going through a childhood cancer diagnosis do want:

  1. A home cooked meal. No matter what is going on in our lives, we all have to eat. http://mealtrain.com is a wonderful resource to organize a calendar of meals for the family. It is free; anyone can put in a name, any food allergies/preferences, dates, and a drop off time; you then get a link to email to friends or share on Facebook. Once someone signs up for a meal slot, they will receive an email 1 week and also 1 day prior to their commitment as a reminder. There is even an option to allow financial contributions to the family.
  2. Support for programs like Alex’s Lemonade Stand (https://www.alexslemonade.org/), cure4CAM (cure4cam.org), and others that fund childhood cancer treatment research. The fewer families that go through losing a child to cancer, the better.
  3. Loyalty from friends. This one is simple: just be present. Offer to help, but don’t be offended if they say “no, thank you.” This is a fragile time for the family. They may need time to themselves, or they may love having you there to provide encouragement. Just be sure to: leave that decision up to them, remain upbeat and pray constantly.

My family is thankful for many things about Vanessa’s cancer journey. She was fortunate enough to be mostly pain free. Despite the cancer in her hips, she was able to walk until the last 5 weeks of her life. And my grandmother appreciates that the other Nielson siblings were old enough to take care of themselves. Vanessa’s classmates and boyfriend were as supportive and loving as possible, but even well-meaning friends make mistakes sometimes.

Things that families going through a childhood cancer diagnosis don’t want:

  1. People coming over without an invitation. Our instinct when a friend is suffering is to help, but this can be suffocating to the family. Wait for an invitation to come over to their home. Coming to terms with a childhood cancer diagnosis is incredibly difficult, not only for the child but for the parents as well. Constant company can make the family feel claustrophobic in their own home, so only be there for them physically when they want you to be.
  2. Medical advice. Every cancer tumor is as unique as every cancer patient. Treatments that worked for one survivor may not work for any other. A family with a child diagnosed with cancer has a lineup of doctors and nurses who will do their best to cure the patient. When they are away from the hospital, they do not want to have more medical jargon spewed at them.

Although my aunt’s life story ends at 19 years old, it is not all tragedy. After her diagnosis she was crowned homecoming queen and prom princess, competed in a state-wide drill team competition, graduated from high school, and earned a license to work in a nail salon from beauty school. She made many friends in the pediatric chemo program, some of whom had to travel to get to the hospital and didn’t have anywhere to stay; this sparked a project. Her legacy lives on through Casa Esperanza, or House of Hope. It is an independent nonprofit home for families who are sent to Albuquerque for cancer treatment to stay in, regardless of their financial situation. It was opened in February 1992 as Casa Esperanza: Vanessa’s Dream.

Many families are affected by childhood cancer. According to cancer.gov it is “the leading cause of death by disease past infancy among children in the US.” 15,270 children and adolescents ages 0-19 will be diagnosed in 2017 alone (cancer.gov). Not all of the stories end the way our family’s did, but no matter the outcome, cancer leaves scars that last a lifetime. Let’s commit to doing everything we can to truly help any family who has been thrown into the terrifying journey of childhood cancer.

Sincerely, a family affected by childhood cancer.

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