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Humans of LabCentral is a new series dedicated to shedding light on the personal stories of the people that make up our diverse community. Through each story, we seek to define what it means to be a part of this ecosystem.  

Ahead of our Beyond the Diagnosis event in honor of Pediatric Cancer Awareness Month, we talked with the event moderator Tera Kull, Head of People Strategy & Culture at LabCentral about her experience.  

"This whole journey started from a late-night phone call in June 2021 that wakes my brother up off the couch. It was their pediatrician, calling with alarm to tell him that he needs to wake my nephew up out of his crib and take him to the emergency room because the 'just to be safe' blood panel ordered during his two-year wellness check returned with alarm bells. At that moment, their life fractured into before and after cancer.

The bruises and fair skin we believed were simply hallmarks of a vivacious toddler, turned out to be harbingers of a very serious situation. He was diagnosed with a very rare form of AML Leukemia called non-DS AMKL—and a devastating clinical prognosis: a 12% chance at survival. In the blink of an eye, he was in a fight for his life.  

From the phone call on that first night, they went almost straight into a six-month inpatient stay at Boston Children's Hospital. Armed with the most compassionate, research-based, world-renowned medical care, he underwent treatment with the strongest chemotherapy regimen science has produced, followed by a non-allogenic stem cell transplantation with initial success. The fragile hope that guarded our hearts shattered by Christmas of that year. He relapsed almost immediately and died 10 months after his initial diagnosis in April 2022, just before he would have turned 3.

His name is Nicholas, and he is the inspiration for the foundation that we've poured a lot of grief and love into building. Seeing how catastrophic the grief and bereavement process is for the people who have to embark on this kind of journey, and knowing there are people like Dr. Susan Morris and Dr. Nina Muriel at Dana Farber Cancer Institute whose work around psychosocial support and the grief and bereavement programming felt like a really, really important thing for us to get behind. Because in so many ways, this is the saddest corner of the space. It can be so isolating because there’s no compartmentalization where you can say, 'if you grieve this way you can go in this direction, if you grieve that way you can go in another’, it’s just a deeply personal experience. So, we wanted to get behind the people who do this work and support how they know to help the families and surviving siblings.

During the cancer journey, we felt so powerless, and yet being able to make a difference in the experiences of others eases some of the pain. If we can make something a little bit more tenable for another family who will walk a similar journey, if we can have one more surviving sibling feel a bit more supported, then it makes feel like, OK, we’re not entirely powerless.

This work was why I was so immediately onboard to moderate this event, highlighting September being pediatric cancer awareness month. The opportunity to spotlight the wraparound supportive services within this community (and particularly at Boston Children’s) is so critical. Support and funding for child life and psychosocial programming can make an impactful difference in the quality of life for pediatric patients and their families. 

The grief and sadness is some of the lowest, hardest, darkest moments I've known. But as I’ve moved through it, in contrast, there are moments when I will be reflective and really appreciative of something beautiful or something you could easily miss if you weren’t still. It’s been a beautiful lesson that I learned from the depths of sorrow in losing Nicholas. 

I think there's a choice. At some point, you come down this path and there's a fork in the road and you can be hardened by loss, you can be closed off to the world after it. You can be resentful; you can be angry. Or you can remain open, and you can let this awful event soften you. And I don't think that the choice is mutually exclusive. There were days and there were moments that I felt so angry at the universe, angry with God, angry with science. But there’s a choice around relinquishing those emotions. You can have those experiences, and that feeling, and then you can still choose joy. There’s this poem I read a lot, it's called The Invitation, and it really resonated with me around the choice to remain open and soft.  

We talk about Nicholas a lot. Nicholas is so present in everyone’s lives. It’s important for us to carry him with us and carry his legacy forward. I love it when a dragonfly lands on a flower and my son yells, ‘Nicholas is visiting!’ That makes me really happy. Nicholas also had this penchant for 80s hair band metal; he loved it. So anytime those songs come on, my boys will be like, ‘yeah, this is Nicholas's anthem!’ We turn it up and we jam out. There are these moments of joyfulness that come through and I hope that's the thing that we can hold on to and keep forever because there's parts of this whole journey that won’t remain the harrowing, hard things.

We have to co-exist with cancer. It was the diagnosis for one little person, but the seismic impacts in the lives of everyone around us were, and still are, undeniable. I choose to focus on the ways we can support the incredible work happening in service of pediatric oncology patients and their families. It gives me a respite from frustration and sadness.  My brother talks about ‘living amongst the wreckage’ in the aftermath of losing Nicholas. The world keeps moving, people in their lives and the priorities of what matter ebb and flow; evolve and grow. But what never shifts for my family is the way Nicholas is missed and the way we need support to grieve, to process, to honor, and to make an impact in his name. That’s why it’s so important to me to host events like the one on September 23rd where we get to talk about the people that are doing incredible work to help support children and families as they navigate their path forward through diagnosis and beyond."

Tera is the president of the Nicholas Richard Collins Superhero Foundation, a non-profit organization that supports the treatment and care of pediatric oncology patients, and their families, being treated through Dana-Farber Cancer Institute at Boston Children's Hospital.