The first time I met Kira in person, she was visiting Rhode Island with her family—her Mama (my cousin, Jeni) and Pappa (Trond), and Kira’s brothers, August and Jasper.
Kira didn’t greet us with a hello; instead, she pig-snorted her way out of the car, up the driveway, and straight into our hearts.
To say I’ve never known anyone like Kira doesn’t do her justice, nor does it tell you much about her. So here goes.
Kira reminds me a lot of her mother, who so many years ago marched up that same driveway and all the way to the ocean, exclaiming over its magnificence when she eventually realized that giant expanse was water.
She never let anyone help her cross the street, insisting she could hold her own hand.
She wasn’t really big on us calling her “our Jeni,” but she put up with it because she had to.
She moved all around the world with her brothers and parents, and she grew up to be the most exceptional person I’ve ever known.
While watching a movie recently, Kira asked her Mama to pause it and said, “Shall I tell you what I’m going to name one of my kids?” “Yes, please!” Jeni replied. Kira said, “Jeni.”
When Kira came to visit at four years old, she did pretty much everything on her own. She got herself dressed in the morning, fetched a breakfast of whatever she could find, joined her Mama for some down dogs on the lawn, and climbed her way to the topmost branches of the maple tree in the front yard, only later wondering aloud how to get down. She was fearless.
She cracked up over the term, ear of corn, dangling one from the side of her head, and she turned casually on her heel, walking away as her brother still fumed over a skirmish she’d let go of as soon as it’d happened.
She splashed her way through the fountains in Boston Commons and chatted with strangers on the T, informing them that she used to live in Bolivia and was moving to Ghana next. And she got temporarily separated from us as we exited the station.
When we found her soon after, she sat on her mother’s lap and asked, “How long would have looked for me?” Jeni answered, “Forever, until I found you.”
Wherever she’s ventured, Kira has folded herself into the hearts of everyone she’s met. And while she may quite possibly be the most adorable little girl you’ve ever seen, don’t dare call her little, and definitely not cute. She is FIERCE.
Not long after Kira and family had moved to her father’s native Norway, she started experiencing sudden onset headaches and vomiting. We were visiting my husband’s side of the family in Montana last summer when I got a message from Jeni saying that the doctors thought Kira had a brain tumor. It was terrifying news, made only slightly less so by their reassurance that it might be benign.
But a biopsy told the unimaginable truth: Kira had a very aggressive brain tumor, which they referred to as a diffuse midline high-grade glioma. I wracked by mind to remember what we’d learned about pediatric brain tumors in oncology, which was pitifully little. It wasn’t until some time later that we found out that most doctors lump Kira’s tumor in with DIPG, due to its diffuse nature and primary location in the brainstem. Whatever its name, this tumor had a dire prognosis, with few children surviving one year post diagnosis.
Kira had three brain surgeries to place a shunt to relieve pressure in her head. Then, as in most places, the only “treatment” offered to her was radiation. Since nobody loves Nutella on pancakes like she does, Kira completed her treatments without going under—which meant she could eat beforehand. With the radiation mask bolting her head in place on the table, Kira practiced meditative breathing as Jeni walked her through the procedure over the speaker.
She had a brief “honeymoon period” after radiation, when her grandparents from Norway and Texas came to spend some time with Kira and the family. They picnicked near the fjords, went ice-skating, and made Kira’s favorite meal of sushi together.
But by December 2016, Kira’s tumor was in rapid progression. She lost the ability to move her left side, and by mid-January, she couldn’t speak, swallow, or see, and the doctor said it was only a matter of time before she stopped breathing.
“I remember lying in our bed, having to ask Kira’s brothers to say goodbye to their sister forever, and Trond and I trying to do so ourselves. I remember the crushing, burning, suffocating pain of facing a life without our precious daughter. I remember each night watching to see if each breath might be her last, then feeling grateful each morning to wake up with her still breathing by my side.”
Then somehow, in this darkest hour, miraculously, Kira started very gradually regaining some of the functions she’d lost. She began to use her right hand again to form a half heart, made whole by Jeni, to tell her Mama she loved her. Over time, she started speaking a few words, and not long after, Kira was able to sit up and eat a couple bites of food, even joining the family at the table for Easter dinner.
Shocked and unsure of what to do after having sent her home to die, Kira’s doctor conceded that she needed another MRI to figure out what was going on and to help plan for future treatment if Kira continued improving. That scan showed that the original tumor had shrunk, but there were a couple satellite tumors in new areas.
Over the next several weeks, Kira continued making strides that looked a heck of a lot like healing, so Jeni began strategizing how to keep her on that path. She’d heard about Mexico through the DIPG community, and she spoke with Mariana Gutierrez and Dr. Siller directly about what to expect. After reviewing Kira’s MRI and seeing her on Skype, the Monterrey team accepted her into their program.
A follow-up MRI that Jeni had to push hard for ruled out bleeding that would have made it more dangerous for Kira to fly, and then Mama, Pappa, and Kira were en route to Mexico.
Kira received her first IA treatment within days of arriving in Monterrey. Her tumor responded by decreasing significantly in size, and the swelling and cysts she had earlier also started to subside. However, she began having more trouble eating, so she eventually needed a feeding tube to supplement her diet.I went to Mexico in May when Jeni’s dad, who’d been down there helping them since they arrived, needed to return home to Texas for a few days. Even after my mother and my aunts had told me about their recent visits with Kira and I’d seen her pictures for months, nothing could have prepared me for the child who met me when I arrived.
The best way to describe her was fragile: paper-thin skin wrapped loosely around the bones protruding from under it; the roundness that the steroids lent her face unable to hide the sickness that lay behind it.
Just as astounding was Jeni’s seemingly endless reserve that allowed her to attend to Kira’s every need, which started at dawn and continued round the clock, save for a couple interrupted winks during the wee hours of the night.
Picture this: your child is wheelchair bound and unable to move anything but her right arm and her head. She tells you she’d like to try to use the toilet, instead of going in the pull-up she’s had to wear since her body surrendered the right to hold her urine. So you hoist her out of her chair, her tiny arm the only part that can grip round your neck, and you squat with her like that, suspending her over the toilet for as long as it takes to help her feel like she has the tiniest bit of control over her life.
Getting Kira to swallow a pill could take a half hour of encouragement and demonstrations, as Jeni placed Kira’s hand on her own throat and swallowed to remind her how it feels.
Her head hurt too much to venture outside much, and every noise sounded like thunder, as the tumor had invaded close to her auditory nerve. But sprinkled between the hours of careful positioning, changing of port bandages, and slowly pushing liquid food-filled syringes, we had a chance to get to know each other again and in a different way, each of us in these new roles that no one could have anticipated.
Leaving them a few days later was the most heart-wrenching task of my life, but I promised Kira I’d return soon.
The next time, I came with Kira’s cousin, Lily. Though they’d not seen each other in nearly two years, the bond they shared retied itself as they fell back into their easy, comfortable closeness. Kira brushed Lily’s hair, told her she loved her (something normally reserved for Mama and Pappa), and pulled her close to whisper in her ear to please stop blowing kisses. “I don’t like kisses at all.”
Kira’s now had five IA treatments. With each one, she gains a little more functioning. She can move her left arm and pull herself up to standing with assistance, her speech is becoming clearer and stronger, and her once broad vocabulary is returning.
As I look into those huge liquid brown eyes so filled with joy at just being alive, I can so clearly see Kira years from now, walking next to her daughter, who’s holding her own hand as she crosses the street.
On November 15th, 2017, Kira passed away from complications of DIPG. We love you totally, infinity much, sweet, perfect girl.
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