Anna_Kearney_photo_1[Editor’s note: This blog was written by Patient Power staff member, Sheryl McIntire, on behalf of the Kearney Family].

Which is more difficult, being diagnosed with cancer or being told your child has cancer? This was the question I mulled over on my drive to visit the Kearney family at Seattle Children’s Hospital. I had plenty of time to consider my answer since a 55-minute drive stretched out into 2 hours due to a 6-mile backup on the interstate. I drive a Saturn Sky turbo deuce coup, so I’m not complaining. But alone with my thoughts, I tried to recall what being 16 years old felt like. When this proved to be too far back in time to be realistic, I focused on the much more recent memories created with my two daughters, now in their early 20s. High school, as we all know, is the rollercoaster highs of prom and homecoming and who-likes-who, and the bottomed-out lows of mean girls, crushed crushes and term papers. We all survive, graduate and move on with silly stories told later in life over an adult beverage.

Anna_Kearney_photo_3Except not all of us get to experience these rites of passage. The Kearney family consists of, at its nucleus, Steve (dad), Kellie (mom) and Anna (their daughter). Steve and Kellie are business owners back in Topeka, Kansas. Anna is a natural beauty with long, dark, curly locks and those big eyes that every other teenage girl secretly envies. Her social media presence strongly hints at above-average intelligence and a sense of humor that belies her 16 years of life. Facebook also shares another of Anna’s traits: a talent for foreign language. Not Spanish or French or even American Sign Language. Anna’s second language is Medicalese: specifically, polycythemia vera, or PV for short.   While all the other kids Anna’s age are roaming the school halls, going to dances, and getting ready for their first dates and first job interviews, Anna is lying in a hospital bed for the umpteenth time in her short life, listening to hums, beeps and medical jargon, and watching soft-soled medical personnel come and go through her glass and mortar room. Instead of exchanging notes and whispers of gossip with her girlfriends, Anna discusses needles and pain levels with her phalanx of doctors and nurses.

Anna_Kearney_photo_4Polycythemia vera is an incurable disease of the bone marrow that leads to an overproduction of blood cells, causing the blood to thicken, arresting blood flow to the organs. PV is one of the myeloproliferative neoplasms (MPNs), which by definition, is a form of cancer. A rare cancer for an adult, it is so rare for a child to be diagnosed with PV, that currently there aren’t any pediatric medications even in development. There are few cancer centers in the world that are capable of handling pediatric cancers. One of those centers is Seattle Cancer Care Alliance, just 55 minutes from where I live.

Kellie first emailed me when I reached out via one of Patient Power’s online platforms, attempting to connect parents of children diagnosed with an MPN. As the conversation unfolded over a series of emails and Kellie told me more about Anna, I knew I wanted to meet this family with their incredible warrior and help tell their story. Pulling into the hospital parking lot, I reached over and grabbed my notebook and a small token of my appreciation for this meeting: a charm bracelet with a zebra motif. Zebras are often used to represent medical rarities since, as all medical students know, most hoof beats belong to horses.

Anna_Kearney_photo_6Checking in with security on the first floor, I was directed to a maze of hallways and elevators, eventually ending on a secure floor where, outside Anna’s room, I was handed a soft, yellow gown and gloves. Gowning and gloving up, I entered Anna’s room. The center focus of the room was a hospital bed—one that appeared to be strangely oversized for the little form it bedded. Although 16, one of the fallouts of Anna’s disease is how it affects her body’s ability to maintain normal growth patterns, leaving Anna somewhere in the lower 10th percentile for her age. Steve and Kellie greeted me with quiet enthusiasm, looking much more awake and alert than other parents on disjointed sleep would be. As we turned our attention to Anna, I was shocked at the difference between the vibrant young lady on Facebook and the bald mite curled up in bed, her impossibly large eyes closed in fitful sleep, with the telltale sores of post-bone marrow transplant medication ripening on her otherwise translucent skin. As the quiet conversation ebbed and flowed around her, Anna woke up and greeted me with a half-hearted smile and a little nod. Her current medications had made speech nearly impossible, but Anna held out her hand as I offered her the little bracelet. When her parents saw that it was filled with zebra charms, Kellie gave a little gasp. It was a symbol that already had meaning for this war-torn family

Anna_Kearney_photo_5Anna needed her rest, so Kellie guided me out of the room and down to a little hallway on the first floor that doubled as café seating for weary parents, visitors and the occasional hospital employee. Kellie treated me to a delicious cup of tea, and we found two seats where we could chat. Not long into the conversation, it became clear that Kellie was a natural patient advocate. Not just the mom “that’s-my-child-don’t-make-me-tell-you-again” advocate but a woman with determination and grit.   As she began to tell Anna’s story, I realized Anna’s story is Kellie and Steve’s story. When it is your child lying in that hospital bed, every needle, port, medication, prod, push and question is a shared experience, driving deep into the parents’ hearts.

Even deeper than their child’s pain lay Kellie and Steve’s fear that they had not done enough, early enough. PV isn’t an easy disease to diagnose. Because of its rarity among those under the age of 20, PV is a zebra diagnosis for the pediatrician. Anna’s chart shows low iron counts, dehydration, migraines, hypothyroidism and splenomegaly, but all were treated as unrelated medical incidences for more than 7 years. Kellie turned all of her energy toward research, watching video after video from Patient Power and stumbled upon Dr. John Mascarenhas. Out of sheer desperation, Kellie shot a blind email to Dr. Mascarenhas. Dr. Mascarenhas wrote back with his cell # and instructions to call him that night "after he put his son to bed.” Steve and Kellie’s suspicions that Anna had an MPN were authenticated as Dr. Mascarenhas directed them towards other MPN experts. With a diagnosis finally in hand, they were able to move forward and advocate for Anna’s recovery, ultimately found in the form of the bone marrow transplant (BMT)—the reason for the Kearneys’ trip out to Seattle Cancer Care Alliance and Children’s Hospital.

Anna’s fight is not over. The BMT has given Anna a greater chance of returning to a life that better resembles teenage normalcy. But until enough awareness is raised for pediatric MPNs, the lives of children like Anna and their families will forever be structured around trips to doctors’ offices and hospitals. Anna lost more than a year of high school to cancer. Her friends consist of those who “Like” her Facebook page or respond to her Instagrams. Even her parents have had to take on the onerous role of advocating for her health versus the spirited milestones that make up the average teenager’s life. But Kellie wouldn’t have it any other way. When I asked her what advice she would give to parents of a child just starting down the path of a cancer diagnosis, she replied, “Protect your child’s trust at all costs. Don’t give energy to other people’s feelings.” Today, Steve and Kellie are starting to cautiously encourage Anna to find whatever it is that will bring her joy and hope and excise fear. As a child cancer warrior, Anna’s battle includes finding her place in her family and back into her role as a teenage girl. One day, we all hope that when Anna says, “I’m fine” it doesn’t mean “I can handle it.” Rather, it is a statement of emotional and physical health.

Standing in the storm adjusting the sails,

Sheryl McIntire, Patient Advocate

Patient Power

Do you know a child with cancer? Do you have words of encouragement for this family? More importantly, do you know a child with an MPN? Help us raise awareness by commenting below.