Return to ‘Normal Life’ After Child’s Cancer: It Takes Time

Reina Haug is taking it all in. Happy and playful, there is also a calm awareness about the toddler. Just starting to grasp language at 17 months, you look forward to hearing what she will have to say.

It’s too soon for sentences or for Reina to tackle the alphabet—in English or her mother’s native Japanese—but she is already connected to the letters “NED.” That’s cancer-shorthand for “No Evidence of Disease,” and the best possible outcome after treatment for Stage 4 neuroblastoma.

Reina’s NED designation came on Dec. 2, 2020, nearly a year after she was diagnosed with the rare pediatric cancer at 5 months. She had a bit of a cold and, while visiting family in Chicago for Thanksgiving, Reina’s parents, Mariko and Jon, felt a lump on her neck. They thought it might be a swollen lymph node related to the cold.

Just to be sure, they took Reina to her doctor when they returned home to Fargo, ND. Prepared to hear, “It’s nothing to worry about,” Jon and Mariko instead learned a cancerous tumor was pressing on their baby’s heart, spine, left lung and trachea.

In Mariko Haug’s native Japanese, her daughter’s name means “wisdom.” That feels exactly right for Reina, whose calm, happy presence survived chemo, mostly intact, but was tested again when she cut her first teeth … two at the same time.

Life for the Haugs immediately collapsed into a blur of biopsies, bloodwork, scans, genetic testing and insertion of a central line in Reina’s chest for chemo. But as her treatment plan was developing, the tumor was growing. In just five days, it was restricting nerve signals to Reina’s left eye, making it unable to open fully, and also affecting blood flow that caused her left arm to swell.

To save Reina’s life, chemo started at 4:45 p.m. Dec. 13. With one chemo round down and another looming, Jon’s CaringBridge post on Christmas Day 2019 was a simple: “God Bless.”

Older children with neuroblastoma have words to express how they are feeling through chemo, but Mariko and Jon could only watch their infant daughter for signs of discomfort, all the while wishing they could take on Reina’s pain themselves.

Over four monthly cycles of in-patient chemo, Reina sometimes didn’t want to eat or couldn’t keep food down. But, Jon said, she stayed her smiley self most of the time. On Reina’s CaringBridge site, he described the day she seemed to discover she had a tongue “and she can stick it out at her dad if she is feeling sassy.”

Reina’s response to treatment was dramatic and positive. By March, sooner than expected, 95% of her tumor was gone and she was in remission. Now on a monitor-and-scan schedule that continues even with the NED designation, the Haugs were able to go home and be, as Jon said, a “normal family” again.

At times, that has been easier said than done.

Reina was very proud of herself when she started walking in September 2020, but has found that hooking her dog’s leash to her favorite push toy presents opportunity for covering more ground in less time.

For Reina, there has been the business of crawling, walking and venturing beyond baby food. She quickly came to terms with an eye patch—it’s in place for six hours a day—and she hardly fussed when she had to start wearing glasses. Once the central line was removed from her chest, Reina made up for lost time splashing in the tub. The family dog and two kitties now have little peace.

But for Mariko and Jon, like all parents catapulted into a child’s health trauma, rediscovering “normal” takes time. Both have resumed regular work schedules but, thanks to the pandemic, are at home. They nurtured a high-yield vegetable garden in their beautifully tended back yard, and there has been talk of a post-pandemic family reunion someplace between North Dakota and Japan, for Mariko’s parents from Hiroshima to see how their granddaughter has grown.

Worry lingers, though. Reina will eventually need surgery to help her left eye open more fully, and specialists are working to ensure chemo hasn’t had unintended effects on her overall development. She is also being monitored for eye and kidney issues unrelated to neuroblastoma.

While the odds are strongly against Reina’s cancer coming back, the possibility terrifies her parents. “It might sound strange but, in some sense, it is harder for me post-treatment than it was during treatment,” Mariko wrote in an email.

Through Reina’s cancer treatment, her dad, Jon, used CaringBridge to share updates with family and friends across the country as well as with loved ones in Japan, where her mom, Mariko, was born.

But that’s not strange at all. Years of studies show that parents of children with cancer nearly always battle anxieties, fears and even impacts to their own health, sometimes to the point of PTSD. Because a child’s suffering goes against every fiber of a parent’s being, is it any wonder?

With help, Mariko is rebuilding the strength that carried her through Reina’s treatment to now process what her family has been through. Jon is also finding a path toward healing, and writing has been a big part of that.

With three siblings, numerous aunts and uncles and Mariko’s family in Japan, Jon first wrote on CaringBridge to keep everyone updated with the same information. “But then I found the act of writing was almost cathartic,” he said. “It helped calm me down and kept my mind from racing and running on all these other different possibilities.”

Jon’s nature—as confirmed by Mariko, who met her husband 20 years ago—is to look for the good that can come out of bad. In the case of their daughter’s diagnosis, serious-but-treatable issues with her right eye and kidney were identified, both separate from cancer. These likely would not have been detected until later in Reina’s life, presenting more risk of losing vision and a kidney.

Also, through the hardest year of their lives, the Haugs felt  surrounded by love and support, which was an unexpected treasure.

“We have heard from people all over the world … family, friends, co-workers and complete strangers we do not even know,” Jon said. “Words alone cannot express how grateful we are for everything people have done for us.”

Some very special words, though, are coming soon—from Reina herself. And regardless of what those first words might be, having her here to say them is a gift beyond measure.