There’s no simple way to explain what the last year-and-a-half has been like for the Reichenbergs. Over that time period, the Kalispell family of three — five if you count its two beloved canine members, Percy the pug and Smudge the German Shepherd mix — have been navigating the experience of a pediatric cancer diagnosis.
Shannan and Michael Reichenberg began to understand something was wrong with their son Henry’s body on a Saturday back in October 2021, when Henry told them about a lump on his neck. It drew their attention, but they decided to keep an eye on it and wait until Monday to visit a doctor’s office. They moved forward with their day, including Henry’s two scheduled soccer games.
“I played two games, but I did realize that I did seem a little more tired than usual,” Henry said.
The following day, a Sunday, they discovered the lump had swelled significantly overnight, appearing to nearly double in size. Plans for one last family jaunt up Going-to-the-Sun Road were canceled, and they went to an urgent care clinic at Logan Health in Kalispell. By Monday, they were meeting with an ear nose and throat doctor, and a CT scan discovered a mass around Henry’s lymph nodes in his neck.
Shannan remembers, with thankfulness, the urgency with which medical professionals treated Henry’s case. On Wednesday of the same week, a needle biopsy confirmed that Henry appeared to have lymphoma. Put plainly, Henry, a fourth-grader at the time, had cancer. Burkitt lymphoma, to be specific. Lymphoma is a general term for cancer that develops in the lymph nodes, which are part of a network of vessels and tissue structures in the body’s immune system that play a key role in spreading white blood cells. Lymph nodes are located in different parts of the body, including the neck, armpit, chest, abdomen and groin. Henry’s cancer had manifested in his cervical lymph node, located in his neck.
Burkitt lymphoma is a rare but treatable form of lymphoma. Success rates are especially high if it’s caught early. But it’s treated with urgency because it’s considered to be a highly aggressive form of cancer that can spread throughout the body and potentially lead to critical or fatal health issues, which can affect the jaw, central nervous system, bowel and kidneys.
Seemingly all at once the Reichenbergs were faced with decision after decision after decision, each one carrying with it both major and minor implications for their lives. Where is the best place Henry can get treatment? How do we get there? What about work? What about the house? What about the dogs? And the question that foregrounded every other question: What about Henry?
They settled on taking Henry to Children’s Minnesota hospital in Minneapolis because of the type of care he needed, and the hospital’s proximity to family. Shannan retrieved her son’s medical records from Logan Health and she and Henry boarded a plane on a Thursday, just five days after Henry told them about the lump on his neck.During the flight, she paged through his records, trying to gain a better understanding of what was happening with her son. Looking back now at all she has learned, she laughs and references her new “Momcology” degree, a joke term in the pediatric cancer community for the way in which mothers learn about oncology, the medical field specializing in cancer treatment.
While Henry and his mother traveled to Minnesota, Michael stayed behind to winterize the house, and then drove out to meet them; at one point along the way, he stopped outside Havre and camped near a reservoir before continuing the drive the next day, trying to get to the hospital as quickly as he could so that he could be there when Henry started chemotherapy and immunotherapy.
Three months later, Henry wrapped up his chemotherapy, having spent nearly 50 days in the hospital, with interludes staying with family nearby, at the Ronald McDonald House, and at a rental. When he was undergoing treatment, his parents would sleep in his hospital room. Over the course of his treatment, Henry underwent nine lumbar puncture tests, four surgeries, and five blood and platelet transfusions.
All of this happened amid the COVID-19 pandemic, as the omicron variant continued to spread during the winter of 2021 and 2022. As rollbacks of masking and other public health mitigations for reducing the spread of COVID-19 continued on national and local levels, Henry’s immune system was totally depleted by the powerful effects of chemotherapy, which kills not only cancer cells, but also damages the immune system.
The Reichenbergs returned to Kalispell fourth months after they left, a changed family, but still together. Even leaving Minneapolis had brought its own challenges. They’d formed connections with hospital staff at Minnesota Children’s who had helped save their son’s life, and so saying goodbye wasn’t easy. Michael said it was a kind of secondary trauma.
When Henry first got back to Kalispell, he talked about wanting to tell his story. He even put together a slide show to present to his peers to explain his diagnosis and how he was doing. It addressed the kinds of questions adults might not realize kids could ask, like whether or not cancer is contagious. It isn’t, Henry noted in one slide. Or why Henry’s hair color had temporarily changed from dark brown to a light brown bordering on blond? It’s an aftereffect of chemotherapy, Henry noted in another slide.
Part of why Henry, age 11, said he wanted to share his story was to raise awareness. The National Cancer Institute, the U.S. government’s primary cancer research agency, estimated in 2022 that around 10,000 children in the United States younger than 15 would receive a cancer diagnosis, and that in the same year 1,050 children would die from cancer. Currently, the five-year survival rate for children with cancer is 85%, according to the American Cancer Society. Pediatric cancers receive just a small percentage of the annual federal funding that goes toward cancer research.
Henry remembers the sickness and exhaustion that came from chemotherapy, during which treatments were delivered through a device, called a port, that was implanted into his chest, to allow for easier intravenous delivery. He missed time in school, missed his friends, and missed his dogs. There were positive moments, too — like celebrating his birthday, learning how to play the ukulele through a music therapy program in the hospital, meeting new dogs through a hospital pet therapy program, making new friends in the hospital, and, of course, celebrating his last day of chemotherapy.
Henry also couldn’t go right back to school last January, even though he wanted to be back around his classmates. It was a frustrating time for him. The school district helped provide a tutor so that he could keep up with his education as his immune system continued to rebound. His parents knew that going back to school, where masking wasn’t required, would mean Henry would be exposed to COVID-19. They waited until he had his second COVID-19 vaccination shot and, in the meantime, tried to be creative about ways to safely reintroduce him to his peers, including by arranging to drop him of at school for recess. He finally rejoined his classmates in school last spring. Henry received word in August 2022 that he was officially in remission, even as his immune system continued to recover.
The Reichenbergs’ lives remain complicated by their experience with pediatric cancer, but normalcy has continued to return. Shannan is back working full time again for the Forest Service. Michael has also returned to his Forest Service job. Henry is on his way to completing a full year of school as a fifth-grader at Russell Elementary School. He was just named a reserve champion for his grade level at the county science fair for a project exploring whether crown closure on trees, a measure of the forest canopy’s coverage, has an effect on fire behavior. His mom was also there at the county fairgrounds, working an informational table for the forest service. She said that things have the feeling of coming full circle.
Henry’s parents think there’s importance in talking about their experience with pediatric cancer. His father, Michael, talked about the gratitude they want to express toward all the people, friends, coworkers, neighbors, family, medical professionals, strangers even, that helped them along the way. Shannan talks about how important she has realized community is, and how people in times of trouble can draw strength from the support of others. She said those gestures of love and support don’t have to be monumental — a card, a homecooked meal, a check-in to see how someone is doing, can be incredibly meaningful to people in times of hardship. Both parents talked about learning how to ask for help.
In a journal entry on the Caring Bridge website, which offers people a place to maintain a website about health care issues in their lives or the lives of family members, Shannan wrote in a September entry during Child Cancer Awareness Month that “the most profound effect we can have on making change is talking about hard things. Don’t avoid these conversations. This is where we can develop empathy and understanding.”
Shannan also talked recently about how she has come to see the value in accepting that you can only control the things you can control. It’s a hard thing to accept when your child has a serious illness and you’re their biggest advocate. She also said that she has continued to work on “honoring the sadness” that she has felt. It’s not something to be ashamed of or pushed aside. It’s part of what happened to them, and they got through it.
“Watching your child go through something like this, it’s hard,” Shannan said. “None of us picked that.”
She added that the recovery process is long-term.
“I think it’s important to convey that it just doesn’t turn off when you get home,” Michael said.
And even though their lives are moving in a positive direction, Shannan said there are still feelings of worry. Henry continues to have regular blood draws and exams to monitor his health, and his parents are still learning how they can support their son and themselves in this new reality.
But alongside those sometimes uncomfortably textured emotional landscapes exists the happiness they have experienced, too; like cheeseburgers and huckleberry shakes after Henry’s three-month CT scan came back clean. Or their trip through Alaska last summer, primarily by train, that was supported by the Make-A-Wish Foundation. While Henry was undergoing treatment, he spent time envisioning the trip and even went so far as to draw out a map.
Michael and Shannan say they’ve witnessed growth and maturity in their son’s development, too. For a period in his life, Henry was dealing with adults on a day-to-day basis, and almost no one else. And he endured medical procedures that would test the resilience of grown-ups, let alone a child. Henry’s growth has also come through in his desire to give back. Just a year removed from spending Christmas in the hospital, he and his mother earlier this winter had the idea to put together Christmas decoration packages for pediatric hospital patients and families at Logan Health. They worked together with the retail outlet store Target to put together the kits and deliver them to the hospital. Henry also volunteered wrapping presents for Logan Health’s holiday gift program for pediatric patients.
“There is joy that he has come so far,” Shannan said.
Michael recalled a moment at a downtown Kalispell brewery. After the family first returned home, they were still undergoing regular testing to chart the recovery of Henry’s immune system. He remained extremely vulnerable to disease. But they wanted to be around their friends and Henry’s friends and reconnect with people they hadn’t seen. So, every Saturday, regardless of the weather, they would meet out on the patio in the fresh air to catch up and socialize.
At one such gathering, Henry saw a girl at the brewery who didn’t have any hair. He went up to talk to her, to say that he had been through cancer treatment, too. They had a shared experience. Which comes down to why Henry, in his own words, wanted to tell his story.
“You don’t know what other people have been through,” Henry said. “Be kind to everyone.”
