The Lesbians, Lenox and the Leukemiasaurus: A Lesbian Family’s Experience with Childhood Cancer

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This post is in honor of Blogging for LGBT Families Day.  To date, none of our “Lenox Slays…” posts have focused on this facet of our family. For you regulars, in case it’s needed, LGBT is an acronym for Lesbian, Gay, Bisexual, Transgender.  For those reading this post as their first exposure to our blog, here is a wee bit of background. On St. Patrick’s Day 2005, Liz and Brooke (aka the moms) met, fell in love, moved in, you know the bit… In February 2008, Lenox, our sassy daughter was born…the bliss of parenthood ensued. Liz and I fell more in love than ever we thought possible with our little girl; Lenox is a strong, smart, dinosaur-loving, bike-riding dynamo. As though any other option were possible, she is a total mama’s girl!  🙂 On July 9, 2011, when Lenox was 3 1/2 years old, we were felled, literally, as we learned that Lenox has leukemia. In true Lenox form, this battle is equated to a dinosaur slaying, and the blog Lenox Slays the Leukemiasaurus was born to share her struggles, wins and little girl-hood with our friends, loved ones and supporters.

Ever since Lenox’s leukemia diagnosis, I have thought about the two-mommy facet of our family – are there many other families with cancer kids who are gay-parented families? (And, no, for the pediatric cancer neophytes, “cancer kid” is not glib or insensitive; it is common vernacular in the pediatric cancer scene.) Is this trauma/drama of our kiddo’s devastating diagnosis any different for us than straight parents? How many of us are there?

Well, nationally, it is estimated that there are 2 million children in the US being raised by gay parents.  The incidence rate of all kids’ cancers is 14.8 cases per 100,000 kids in the US.  If you apply that incident rate to those 2 million kids with gay parents (I know, I am sure some glaring assumptions are being made in doing so) I would guess there are just fewer than 300 kids in the US with cancer and gay parents. That seems small, thankfully, but at the same time high – really? 300 other families like us? Where? Who?

I searched for online support groups for gay parents whose kids have cancer; after all there are several pregnancy sites with subgroups for gay mamas, there must also be some for this. The variety of sub-groups among cancer support sites is pretty vast – subgroups exist for all manners of dichotomies and less common cancer types. But in all my searching, the only group I could find was for a Rainbow Childhood Cancer Connection. Sadly, their most recent posts were from 2008.  I felt impelled to post on gay parenting web sites or on sites for parents of kids with cancer, to send out feelers.  Hello? Any other lesbian moms going through this now? What is your experience like?

But I have hesitated in tossing out the feelers. Does the fact that we are gay families going through this really give us anything more to bond over or share? Self-stratification among parents of cancer kids seems to trend understandably by locale, or often more specifically by type of cancer, primary oncologist or clinic, age of the child during treatment, phase of treatment, etc.  So does the LGBT status of the parents even matter? Of course, ideally it shouldn’t be different, but the fears we face, and how we may choose to approach situations, is different, at least subtly. So I decided to do this blog post about the “gay” aspect of our family’s leukemia experience. Which experiences along the way for us, in our great gay-friendly city (Austin), were different?

As you can imagine, in the beginning we were aware that the possibility existed that we might be treated differently – from the horrifying initial possibility that they may try to prevent both of us moms from fully engaging in medical care and decisions (every gay parent’s worst nightmare) to the more subtle interpersonal engagements we might face. One of the first things I thought of as we prepared ourselves to go over to the cancer ward of our local Children’s hospital that very first day – besides sobbing and trying to alternately not show Lenox that anything was wrong – was whether we should bring the adoption papers establishing Liz as the other legal parent. Later that day, after we had been admitted to the Oncology ward, we sat in Lenox’s hospital room with Lenox’s oncologist. After hearing all the medical next steps and absorbing all the things a parent never wants to have to digest, she asked if we had questions.  In spite of all the turmoil of the moment, I told our doctor nicely but firmly (maybe I just imagined it was firm, I might have been a quivering mess :)) that Liz is the other legal parent and everything was to be handled that way. Our awesome doc just said um, yeah, this is Austin, not an issue. That definitely took a weight off our shoulders, but at that moment the cancer diagnosis for our daughter had placed the weight of the world there. I can definitely say that had her answer been any less affirmative, a shocking devastating day, and many days to follow, would have been made infinitely worse.

I am pleased to say, now, that our oncologist seemed to speak not only for herself in her answer, but her peers and the other caretakers we encountered.  But initially, we did not know, nor were we comfortable assuming, how far-reaching her open-mindedness would extend. We have worked with the same cancer clinic, same nurses, same hospital ward and same OR team through this whole thing. With rare exception, for each medical personnel we met, I wondered just slightly, as we introduced ourselves if they might possibly be anti-gay. Did they look at us askance? Will their personal beliefs affect our care in any way? While I don’t generally care what people think of us, as many LGBT parents know, that changes a little once you have kids. I tend to be more aware of whether Lenox having two mommies will somehow bring differential treatment upon her.  In a medical setting that is the same but magnified. Are the nurses assigned to us based around their willingness to take “the gay couple”? Are the social workers visiting us more than the others? Are they uncomfortable with two moms sleeping on the pull out bed in the room? Interestingly, I can say there were very few times we felt possibly treated differently. I feel that the staff everywhere has been open, comfortable with us, friendly, etc.

Like in other situations we lesbian moms encounter, there is of course the insensitive but ubiquitous “which one of you is the mother?” Uhm, we both are. Which usually elicits responses from “cool” to “huh? I don’t get it” (really?) to even more offensive, “but, which of you is the REAL mom?”  Now in a non-medical setting, we would just say “we BOTH are” and let it go at that.  But in our case, especially in the initial interactions with a different area of the hospital, there is an extra tension to the question. If we answer that question with which of us is the birth mom (which is usually what they mean), are they asking to try to exclude Liz in some way if we answer “wrong”? Is there a medical reason they might need to know? Will our answer somehow change their level of deferral and respect to the non-birth mother?

We are lucky that we have not once experienced anything we would consider overtly anti-gay. We have noticed, at one ER visit in particular, that the doctor (not our regular oncologist who we love!) seemed to speak almost entirely to only one of us, body language turned toward that mom, and if not consciously excluding the other, at least not making any eye contact with her.  We wondered if she thought the other one of us moms was maybe just a family member in the room. Interestingly, when that same doctor came back later, she was very inclusive of both of us. (Our theory was that she checked Lenox’s chart which we assume relays primary caretakers, and noted her error). Over all, in our Austin locales, we have been totally out, and both been treated just as we should be – as her two parents, as the momS we are!

So has it been different? Yes, but so are the experiences of every cancer kid’s family.  Like any other family unit characteristic, it just adds layers of uniqueness to the experience. Stigmas, misperceptions or stereotypes are just as likely to pop up for mixed race families, for instance.  Uncertainty for medical staff on how to treat the families, are just as likely to pop up for divorced parents, step-parents, etc. Is our LGBT family status any more challenging for us to maneuver than a set of parents with a language barrier who may even be relying on their child, the patient, to interpret the doctor’s news? Or than an hourly wage earner parent who loses wages for every hour at their child’s bedside? Or than a single mom with several other children to take care of while wanting to stay at their cancer kids’ bedside?

All I can say with certainty is that a child’s cancer diagnosis is harrowing for every parent, and it is all terribly personal and unique. That being said, I do think our worries and stressors are different, even when dealing with the most open-minded of medical teams.  So I do wonder about you other 299. Are you really out there?