Author: Becky Gold
For me, it can be easy to get caught up in all the cool things happening in the cancer world—it seems like new, potential cures are in the news constantly. We’re continually improving the medical, surgical, and psychological treatment of our cancer patients, yielding more and more survivors every year. We are now able to catch cancers earlier than ever before, and we put more emphasis on patient autonomy allowing cancer patients to have a voice in their care. But with all the excitement and progress within the cancer world, it can be easy to lose sight of the personal aspect of this field—the individual stories and challenges that populate this strong community. Today, let’s be reminded that behind every datapoint in the groundbreaking research covered on this site and elsewhere, there is a patient with a story, and that story has infinite value.
Today, Hanna—and her family—is where our spotlight lands. While I hope this post can provide some insight into the challenges the cancer community faces, I also hope it illuminates who Hanna is, because her cancer story highlights not only her strength, but also the full richness of her character.
Hanna’s cancer story started out as one that 2,500 to 3,500 pediatric patients experience each year—a diagnosis of acute lymphoblastic leukemia/lymphoblastic lymphoma (ALL/LBL) each year. ALL and LBL are differing presentations of the same disease—Hanna was diagnosed with ALL. But, 3 years after finishing up her last treatment, her story diverged from the norm. This past May Hanna was diagnosed with acute myeloid leukemia (AML) due to the chemotherapy used during her treatment of ALL—less than 1% of patients treated with chemotherapy for ALL are then later diagnosed with AML. Family and friends often refer to Hanna as a unicorn—her health journey, as well as an infinite number of other qualities, make her special.
In addition to being special and unique in a million ways, Hanna is also a normal 18 year old. She has a core group of friends who are often by her side. They do normal teenager things—sleepovers, eating out, going to school dances and activities together. They also do not-so normal teenager things—they walked across the stage with Hanna at a special graduation hosted early for her, since she wouldn’t be able to attend the regular ceremony due to her treatment. They went to an early prom together for the same reason. And they visit her in the hospital.
Like many teenagers, she had a job before graduating. During high school, she worked at a skating rink, a job which she often speaks of fondly. The rink recently hosted a fundraising event for Hanna, showing that the skating community loves her as much as she loves them.
Like many teenagers, she volunteers. Prior to her second diagnosis, she volunteered in the very children’s hospital where she was diagnosed and treated for cancer the first time.
She has a dog and a cat that eagerly await her return when she’s gone, and get many snuggles from her when she is back. She belonged to the leadership team in high school. She loves teriyaki. She possesses a talent for making friendship bracelets.
Hanna is also gifted academically, participating in the running start program in high school which allowed her the opportunity to explore subject areas not offered to her peers. After one more quarter in college, she will have her AA. Currently, she wants to be a doctor, but said she also has really liked her political science class. Originally accepted to the University of Washington to enter in the fall of 2019, she is now slated to enter in the fall of 2020. Once there, she will be well on her way to becoming a physician, or maybe a lawyer, or something else entirely. Either way, she’s going to move mountains.
I recently visited Hanna a few times during her inpatient stay at the hospital—AML patients have to stay in the hospital 24/7 while their bodies recover from the destruction of chemotherapy. Her room was very much her own—personal touches from pictures on the walls to some inspirational quotes in the bathroom to signs of encouragement above the bed show that Hanna has made the space hers. From the moment I walked into the room, it was clear she is well loved. And who wouldn’t love Hanna? She has a way of making all around her smile and feel loved themselves.
On this day, her hair was dyed purple. Her mom—Kelly—recounts how after her last battle with cancer, she said that if she ever got diagnosed with cancer again she wanted to dye her hair a crazy color since she knew it would fall out anyways. It would be untrue to say that Hanna doesn’t take anything too seriously—rather, it’s more accurate to say that she knows what should be taken seriously, and what can have a little fun thrown in. Unfortunately, not much about a battle with AML lends itself to opportunities for fun, so she decides to have fun where she can—such as dyeing her hair!
On the first day I visited Hanna the whole family was in tow. Her parents both greet me warmly even though, at this point, I had only spent time with Hanna and not yet met them. It’s clear where Hanna gets her warmth from. Her sister sits next to Hanna’s bed in a chair—she has a smile that matches Hanna’s but a personality all her own. On subsequent visits school and work have pulled her sister and dad from her side, but Kelly is always there. She spends every night at the hospital with Hanna as they wait for her body to recover from the chemotherapy.
I hesitate to say that Hanna and her family are lucky—being diagnosed with cancer, twice now, is far from lucky—but it would seem that she has a robust support system. I see the type of support system you see in movies or read about in books—messages of positivity coming through on social media every day, gifts from visitors decorating her room, friends flying in from out of town. But even with all of this (and much more), many significant gaps still remain. Kelly and Hanna helped illuminate some of the ways in which cancer patients and their families can get left behind.
Finances, of course, are one of the big things that always come to mind. According the AARP and research from the Fred Hutchinson Cancer Research Center, the average cost of cancer treatment—across all types—is $150,000, with cancer patients and their families being 2 and half times more likely to declare bankruptcy than their healthy counterparts. Keep in mind, pediatric cancers tend to be treated more aggressively than adult cancers, resulting in a higher complication rate and a higher rate of unexpected hospitalizations. Additionally, leukemias are one of the most expensive cancers to treat. Therefore, pediatric leukemia can be a financially lethal combination, and it can be assumed that the costs for these patients are often higher than the aforementioned average. While most hospitals truly do care about their patients and families, these institutions are ultimately businesses and have to worry about the bottom line. This paradigm, unfortunately, puts patients and their families in tough situations. For example, Kelly shared with me that their family got an astronomical bill for some of Hanna’s pre-chemotherapy testing and procedures just as they were trying to get her moved into her inpatient room that she would reside in for the next 5-6 weeks. Insurance had denied the testing and procedures, and now Kelly had to put jumping through all the hoops of either appealing and/or paying the massive bill at the top of her to do list. Even in the best of circumstances, this is a challenging situation.
After the last battle Hanna had with cancer, Kelly said that the family had been left in a tough financial situation. During treatment, they had put all their energy into focusing on Hanna and doing everything they could for her—the correct place for the limited energy of a family during a traumatic time such as this. But once Hanna had completed her treatment, they financial implications hit them, putting them in a tough spot. In a time when they should have been out celebrating Hanna’s remission, they were worrying about their finances. She says that this time they were better prepared—already looking out for the large bills coming their ways. Additionally, a relative set up a Go Fund Me, hoping to alleviate some of the burden.
Another big gap in both support and the medical system—for cancer patients and many others—is mental health care. Hanna is at one of the best hospitals in the country, and yet caring for her psychological needs feels hard to come by. While the hospital has mental health services, the program lacks both staff and funding, leaving an 18 year old to process trauma most people could never dream of without professional help. Additionally, few resources exist for the mental health needs of the family. With less than 3 years between Hanna’s initial remission and subsequent relapse, the family was still reeling from the first journey when they had to plunge head first into another. Of course, it’s not that these resources are all together absent. But with a child going through cancer treatment, the time it would take to track down this niche of healthcare is nearly impossible to find.
For Hanna, she has found a bit of healing through a blog she started to chronicle this second round of cancer. She agreed to share her blog for this piece, so click here if you want to check it out. On it, she talks about her day to day as well as some big picture ideas. Her strength and grace is evident in every post.
Just like there’s no one reason or cause that people get cancer, there’s no one perfect answer or solution to the infinite challenges in the cancer journey. The few problems discussed here are only a small piece of the experience, but maybe by talking about them we can we can take a small step in the right direction to alleviate some of the unquantifiable burden families like Hanna’s have to face every day. So what do we do? It seems overwhelming. You can help out Hanna’s family here, and you can continue to help out families like hers here. You can donate blood (cancer patients frequently need transfusions). You can reach out to a friend or neighbor who’s family is going through a cancer battle, or someone in the midst of a cancer battle themselves. When you say to them, “What can I do?” they won’t always know how to answer you, but they will always appreciate it, and they’ll know they’re cared for. Show up for them again and again and again. Often, patients and families receive a big influx of support at the beginning of their journey, and then look around in the middle or at the end of the path and find themselves alone. Keep showing up for this community—our community—even when it seems like the battle is “done.”