*This post is written by my sister Kellie, a child life specialist, who lives/works in the DC area. She gives some great thoughts on parents as caregivers for kiddos with cancer diagnoses. Thanks Kel! So insightful. Patients/caregivers need more people like you in their corner!*
I work with sick kids - primarily kids who have cancer. 9 times out of 10, when I explain this to a non-medical person, I get a gasp, frown/grimace, and something along the lines of, “That must be so hard”. Sure, some days it is challenging and draining, but I get to leave it all at work and come home to a peaceful, healthy household. Let me tell you who the real MVPs are - these kids’ parents.
As a child life specialist, I provide psychosocial support to kids and families in the medical environment to maximize coping and minimize trauma. That involves so many different things. I translate doctor lingo to five-year-olds. I prepare kids for what getting their port accessed or having a spinal tap will feel like, and then brainstorm coping skills and distract them through those procedures. I use medical play to get the terrified toddler comfortable with syringes and blood pressure cuffs. I advocate for teenagers’ opinions to be included in their plans of care and sometimes talk with them about what they want their legacies to be. I teach kids what cancer means, and use clay and beads to make bones and demonstrate the different parts of the blood. I build their confidence when their hair falls out, and get them focused on the future, when all of this will be behind them. On my best days, I get to hang out in our playroom and “just play”, making slime, building forts, or having superhero vs. dinosaur battles, so that these kids can be regular kids, and aren’t so scared to come back to our clinic next time.
One of the things I am luckiest to do, however, is to sit and really listen to these kids’ caregivers, and, let me tell you, they are going through a lot. We see all different types of cancers, which all have their own challenges and treatment courses. Leukemia, however, is the most common form of childhood cancer, and the standard treatment plan is two-and-a-half-years long for girls, and three years for boys. “In treatment” means countless days of chemo in clinic (often lasting from 8am-5pm), appointments for scans and bone marrow aspirations, overnight stays at the hospital when blood counts drop too low, weeks of daily radiation appointments, and understanding and managing huge pill boxes at home, labeled with days of the week and morning, noon and night. FMLA does not even begin to put a dent in three years’ worth of needed days off work to take care of a pediatric cancer patient. Most of our families need to decide who will be quitting their job, and how to support a family on one income. Some are able to telework, but are then the most stressed in clinic, managing bulky laptops as well as their sick kid’s vomit bag. Let’s also add that obviously some families have multiple kids - who is driving the siblings to soccer practice, making them dinner at night, or attending parent-teacher conferences?
While I can listen to and empathize with these parents’ struggles, my work is limited to what I can do within my clinic that day. I can’t cook these families dinner, drive the brothers and sisters to their sports, find these parents the most understanding and flexible jobs in the world, help with their bills, or walk their lonely dogs at home. I can, however, refer them to our local caregiver support organizations, who can do maybe a few of the things on that list to make huge impacts on these families’ daily lives. These organizations are critical to our families’ ability to cope with a life-altering medical diagnosis, and I heavily rely on and am so thankful for them. Without some place to send these families too, I would just be helplessly listening and empathizing.
An organization like the Right Relief has the power to touch so many people, and fill the gaping holes in our health care system. I am so excited that the families of the greater Milwaukee area will soon have another place to turn to for help. While my work is primarily in oncology, I absolutely love that the Right Relief isn’t limited to diagnosis. The existing support for pediatric oncology is huge, while families coping with neurologic disorders, heart conditions or sickle cell disease have only a fraction of that support available to them, while facing some of the same struggles. I couldn’t be prouder of my sister for taking this on and providing a lifeline to families in need.
*If you have a story to share about your profession in the health field or an inspiring caregiver, send us an email at therightreliefinc@gmail.com and we can include you in a future blog post too!*
