Her nominator writes: Dear Frankie and Heather,I’m writing today to recommend of a very special young lady that could use a little magic for the Princess Memorial Sessions. I met Ms. Marlayna about three years ago when I started working in the nursery at our church. I have since come to know this feisty, charming, sweet, and endearing child better in the intervening years. I have a soft spot in my heart for Marlayna, because she’s a pretty good match for my Lily Kate. Even though Marlayna is three years older than LK, she is quick to involve her in games, and they are equally mischievous. (If that doesn’t chill your blood, I don’t know what would.) When I asked her mom for her permission to nominate Marlyana, she quickly agreed, and I set out to interview her a little bit about Marlayna’s illness. But before I talk about her sickness, I have to begin by defining her as her mom did: Drama Queen. Energetic. Loving. She is anything but her illness. In fact, she lives and prefers others NOT to be constrained by the fact that she has an inoperable brain tumor. Her schoolmates do not even know that she’s sick—other than by her frequent absences.
Her (and her family’s) journey began five and half years ago, when at two years old her parents were visiting relatives in Mississippi for New Year’s. Marlayna had been acting a little weird, but her mom thought that it was nothing more than a winter cold or a viral infection. The day after New Year’s, she became violently ill and lost balance. They took her to the local emergency room. Within a week, she was undergoing brain surgery to remove as much of the tumor as possible. The doctors there did get some, but it was too close to an artery to remove it all. It’s difficult for me as an outsider to know how to relay five and half years of five rounds of chemo, experimental treatments, and ups and downs to you. I do know that her mom stays extraordinarily strong, and Marlayna plays as hard as she can.
Writing now has a particular poignancy and urgency. Earlier this month, during a routine checkup, her team at Scottish Rite noted that there had been some growth in her tumor. Marlayna had been participating in an experimental treatment that had hopefully fewer side effects than normal. When her mom went for the team meeting the following week to discuss the results, she was told that Marlayna’s tumor had grown 25% (where the trial treatment was supposed to be helping, not 25% overall) in the last six months. Marlayna is no longer eligible for the trial medicine. On Monday of this week, she began chemo again. It has not been an easy week for their family. Both parents have missed work, but more importantly, Marlayna has been very ill and unable to eat. When I asked Marlo (Marlayna’s mom), it was between the finding out that the tumor had grown and the team meeting to decide treatment.
I’m writing because I just want Marlayna and her family to know that they aren’t alone. They are surrounded by love. Fairiography represents hope to me and the potential for a little magic—even if it’s the magic of friendship and someone who shows a stranger that they believe in them. I think there may be a little bit of alchemy in your lenses; you guys always manage to show Lily Kate’s true spirit whenever you see her. I’d love that lens to be turned on Marlayna so that the high energy, loving, drama queen can have a special experience and the moment can be captured in time.
Marlo said Marlayna was feeling tired and a little worn down from starting chemo again, but that she was in overall good spirits. It’s a low dose ‘gentle’ chemo (if you can HAVE a gentle chemo, this is what you want), given over the course of a year. I expected to find a little girl all sick with the meds, but this was not the case! Marlayna wanted her younger sister Isabella included in the photos. Both of them were total chatterboxes and we spent this entire session talking about birds and fairies and bugs and such. I would have never known she was sick at all, she bounced through the photos so well.