Making DIPG History in Monterrey: A Year Later

We’ve been back from Monterrey for a day, and there’s so much to reflect on from this trip.

Unlike last summer, where we went with a clear vision and a plan—we were there to meet 11 families who’d brought their children to Mexico in search of a cure for DIPG and publish their stories to raise DIPG awareness and have people fall in love with these children, to show them that it truly could be anyone’s child affected, and we’re all responsible to help—this year, I just knew I needed to go back. I wanted to visit the families I already knew and love, and meet some that I hadn’t yet. I wanted to see how everyone was doing. It was time for an update.

Also unlike my previous visits, we didn’t stay with family. Kira lived another seven months with the treatment in Monterrey, but she passed away last November. So going back in that sense—since November was the last time I saw her alive, the last time I could hold her hand and tell her I love her and show her where she’d always stay, right here in my heart—was difficult.

Kira Jeni

Kira and her mama, 11/17


The sweetest hand I’ve ever held

November was also the last time I saw Annabelle before she slipped into a coma. Her mum brought us homemade treats, and her dad drove me all over the city to gather medicine for Kira and the necessary paperwork for her to return home to Norway. Annabelle ran around the apartment and played out on the balcony, blowing bubbles with Kira’s little brother, and she recognized her wristband on my arm, pointing to it and saying her name.


annabelle bubbles

Annabelle, 11/17

This time, Annabelle was attached to life support, as she continues to fight to come out of the coma that’s kept her sleeping for almost two months. Her parents take turns by her bedside, all the while caring for and trying to keep up with her 3-year-old sister, Alyssa. Yes, things have changed.


Annabelle, 6/18

They’ve also changed for little Edie, who arrived in Monterrey in early January in good clinical condition, and who worsened after each of her 5 treatments. She’s since made a comeback, though, with the help of a different set of medications tailored just for her, which target her tumor and have helped her regain the weight she’d lost and the strength and spunk that have always been a part of her, but laid dormant for some months. Her parents are currently investigating other treatments to help Edie continue on this healing path.


Edie, 6/18

And then there’s Zoé, who we met last year and who is still well, considering the beast she’s battling. Zoé’s speech has gotten a little less clear, and her walking more wobbly, but she continues to show DIPG who’s boss after fighting for over two years—a remarkable feat in itself.


Zoé, 6/18

And Kira, a girl who reminds me so much of our family’s Kira (I have to insert here that her mama always clarified that yes, she is her OWN Kira; no one could ever claim her as “theirs”), not only for her name, but also for her sweet ferocity. Kira is positively thriving, and her family credits the treatment for her well being.


Kira with my daughter, Lily, 6/18

There were more children that I met and who I won’t include publicly. Some of them have declined over time and are fighting for their lives; others are responding to treatment and steadily improving; and others are in between—struggling intermittently and actively fighting.

I think it bears repeating here that none of the families were promised a cure in Monterrey, though of course we all pray that there will be a first to survive this monster.

My role in this project also bears repeating: I came to support the families who went to Mexico with their children, and with no attachment to this particular treatment. Rather, I came to help spread the love for these families and celebrate and foster the collective hope they found in and among each other as a community of transplants who went to the ends of the earth to try to save their children. My family was among them, and Kira my original inspiration. Now they are all family.

Beyond anything else, I think the most critical thing I learned, again, is the importance of showing every family living with this horrific diagnosis our enduring, unconditional support. There is no known cure for DIPG. Each family is doing their absolute best for their children who they love more than life. They go into this—and all decisions about their children’s care—with eyes wide open to all available information. They’ve thought long and hard about the best options for their children. They’re painfully aware that there is no right answer, no guarantee, nothing that has been proven to help. They are in a desperate, impossible position. For many, part of the process includes taking chances and leaps of faith and putting their children in experimental treatments (actually, every DIPG treatment is currently experimental), as they try to find anything that might save them.

It’s impossible for anyone who’s not been through the horror of DIPG to say what they would do at any point along the way. All of the decisions belong uniquely to each family; there is no right or wrong, no room for judgment, only for compassion.

Since this trip opened my eyes to even more of the hardships that these families face and the ever changing paths that many of them pursue, I’ve decided to spend more time exploring and learning about some of those options, and I hope to eventually include the stories of more children and families searching for a cure for DIPG, wherever their journeys might lead them. I hope you’ll join me as we continue to love and support each family, whatever path they choose for their child.

Thank you for being there.