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.

Comments (11)

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Robert W. Grey Feb 26, 2021 3:35pm
We both are so happy that your baby girl is doing well. Love, Bob and Chris Grey Minnetonka, MN
Michelle Feb 24, 2021 10:57am
God bless you all. Prayers .
Jackie Chaya roberts Feb 23, 2021 11:47am
This was an amazing view into the family's reaction.. very touching. The love for a baby or toddler is so intense most mom's and maybe dad's would give up their organs, even their lives if that would help the baby survive...
Xochitl Grant Feb 16, 2021 12:41am
As a former teacher of English to speakers of other languages, I'm used to looking for errors, both large & small, in people's writing. I thought the Haugs would want their post to be perfect! "Also, through ^the hardest year of their lives, the Haugs felt surrounded by love and support, which was an unexpected treasure." "And regardless of what those first words might be, having her here to say them is ^a gift beyond measure." As a former teacher of English to speakers of other languages, I'm used to looking for errors, both large & small, in people's writing. I thought the Haugs would want their post to be perfect!
Ana Masri Feb 15, 2021 2:12pm
Wishing her a long and happy life🦋🌈🌟
Pat0 Feb 14, 2021 11:02pm
Blessings on your continued journey. Your strength and perseverance are awe inspiring. Our loving compassionate God is with you and your gorgeous baby girl. Sending love and healing thoughts.
Peggy Larson Feb 13, 2021 2:02pm
So glad your precious little girl is doing so well. She is absolutely adorable. Praying for your whole family.
Pamela Kenagy Feb 12, 2021 9:11am
LOVE MADE AUDIBLE! Dear Mariko, Jon and, now, Julia...thank you thank you thank you for your beautiful expressions of love and care. As God is the Living Word made flesh, your words written here have also touched hearts in a loving, nurturing manner. My husband was diagnosed with Stage IV metastatic melanoma on January 7th. Radiation treatments began this past Tuesday and today they begin adding the Keytruda infusion. Your mentioning acute mental diligence as parents, Matiko and Jon, and your sudden onset of "buckling knees," Julia, were a light of recognition to me as your words put a name to the journey that I am on in tandem with my dear husband...PTSD and being mentally on my knees every minute. I, too, am a writer, expressed by poetry overflowing with words of faith overcoming fear, and trust in that faith deadening the weight of the echoing "what-if" words. I praise God for Reina's NED and pray that you, and we, may all continue to richly know His peace and presence throughout this arduous journey. God bless!
Cynthia Dennis Feb 11, 2021 3:11pm
Praying Just read your familys story REINA BEAUTIFUL. GOD IS GOOD ALL THE TIME
Julia Feb 11, 2021 12:47pm
Hello Jon, Mariko and Reina! I am writing you while receiving my third round of chemo for Stage IV, Ovarian Cancer. I went to log onto my Caring Bridge site and saw this adorable picture of Reina and was quickly pulled in. A bit about me....I am 64 and live in a suburb of Denver, Colorado. I was diagnosed on December 12, 2020, and started treatment on December 31st. I don't have to tell you what a whirlwind you experience after receiving this news. I am married and my husband, Peter is the best support around! We have two adult children who both live out of state. I am a psychotherapist and life coach and have put my practice on hold. Peter is an Episcopal Priest currently serving a church (virtually) in Aspen. I'm so moved by your photos, your story and oh-my-God overwhelm and terror and helplessness of having your precious child experience such trauma! And, Jon, I also have found solace in writing. Something that stands out is your tendency to look for the positive - the light in the darkness. I share this as an important part of my healing protocol. As a matter of fact, 3 days after my dx, I was standing in our kitchen in Aspen when suddenly I was gripped by terror....to the point where it caused my knees to buckle and if I hadn't grabbed the counter, I would have ended up on the floor. I steadied myself, trying to breathe and this message came to me: LET LOVE DO ITS WORK. I call it my Divine Download. It's become a grounding place, a source of comfort and guidance and I invite you to use it, if it resonates. You can learn more on my Caring Bridge site:) If it's ok with you, I will add you and your family to my daily prayers and will beaming love to you each day. Much love, Julia
Rocky1542 Dec 17, 2020 7:14pm
NED❤️
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