Support Emma's Fight Against Retinoblastoma

“Hey babe, I think I just saw something weird in Emma’s left eye”

~Daisy (Sunday 5/12/24, Mother's day)

“Yes for sure there’s something there, I want you to go see an ophthalmologist immediately”

~ Our Pediatrician (Monday 5/13/24)

“So mom and dad, I need you guys to go to Miami as soon as possible, I’m referring you guys to the ocular oncologist. They need to do an Exam Under Anesthesia (EUA) right away!"

~ Ophthalmologist (Wednesday 5/15/24)

“Mr. and Mrs. Herbas… Emma has cancer in her left eye, it’s a Retinoblastoma, we need to start chemotherapy immediately…”

~Ocular Oncologist (Friday 5/17/24)

Four sentences spoken in a five-day span that completely turned our lives upside down. What seemingly felt to be the beginning of a beautiful summer filled with long, sunny beach days and weekend getaways quickly turned into a parent’s worst nightmare. “Your daughter has cancer”.

Mother’s Day of 2021 is when we first found out Daisy was pregnant with Emma (we lovingly call her Memma as her older sister could not say Emma, so Memma stuck). I always jokingly tell Daisy that was my mother’s day gift for that year, “Boom your eggo is preggo! You’re welcome!”. Exactly three years from that date, Daisy, arguably did the most motherly thing ever and saved Memma’s eye, and possibly her life. As I was playing with Memma, holding her head in my hands, Daisy had the perfect view, for a split second, into Memma’s left eye; a weird translucency that immediately sent her Momma-bear-spidey-sense tingling. Here’s the crazy thing about it all, I know the cancer is there now, I know the exact location, I know what to look for… but no matter what I do, even if I replicate ALL the conditions that were there that night (the lighting, the exact tilt of her head, etc.) I STILL CANT SEE IT!!!

The thought of Guardian Angels (Angelitos de la Guardia) is something that my mom always inculcated in me: “They’re always looking out for you…they’re always there”. For that one split second, Memma’s guardian angel shone brightly in her left eye and got Daisy’s attention. Or maybe, Daisy IS the guardian angel incarnate! I like to believe the latter.

We are about five weeks out from the initial discovery. Since then, we’ve been through her first round of chemo, a couple of exams under anesthesia, a laser intervention and an MRI. All the treatments are being done in Miami at Bascom Palmer, and they have come a long way. The Chemo itself is very localized and she has few of the traditional chemo side effects that one gets from systemic chemo e.g. hair loss, nausea, weight-loss. The procedure itself is extremely invasive. She first needs to be sedated, intubated, placed under general anesthesia and then paralyzed; A neurovascular surgeon punctures her little artery near her groin, and threads a catheter all the way up her brain, right behind the ophthalmic artery, and instills two separate chemo agents. After that, she goes to the Pediatric ICU for monitoring. This same procedure needs to be repeated anywhere between 4 to 6 more times.

The baseline MRI we obtained, did not show any signs of metastasis. Which is amazing because this is such a rapidly growing cancer. Once it invades the optic nerve, it is a straight shot to the Central Nervous System (CNS). Just for reference, Emma had her two-year-old photo-screening appointment in January of this year and it was perfectly normal. Fast forward to May and it was abnormal. We will need to get MRI’s every three months for at least the first year.

On our most recent Exam Under Anesthesia (EUA), we received a mixed bag of good and bad news. Firstly, the cancer seems to have decreased in size by about 40%, amazing! Unfortunately now, there are free floating “seeds” in the vitreous humour (the jelly-like substance that constitutes the eyeball immediately behind the cornea, pupil and iris). These little insidious seeds are essentially in a state of “hibernation” or “suspension” if you will. They can reattach anywhere within her retina and initiate a new tumor. So, what’s the treatment for these little fuckers? Intra-vitreal chemo… yep. They will advance a needle into her vitreous humour and instill chemo directly into the jelly. The biggest risk with this procedure is that in the act of removing the needle, they can inadvertently seed cancer cells extra-ocularly which would take us down a whole other path of complications.

So how is the young, precocious patient doing? Well, she’s my little Inca-warrior princess and as such, she’s tough as nails. If you were to see her, you wouldn’t think there’s anything going on with her. Just another tiny little human trying to get herself in trouble, a little Trauma alert. She’s still as mischievous, equally as manipulative if not more, equally as feisty as she was before this whole ordeal started. Kids are resilient, extremely resilient, at least I keep telling myself that. Daisy and I on the other hand, are a mess. I have my days where I have a good cry inside a patient’s room in the Trauma ICU where I work. Daisy has her moments as well. But I’ve learned to accept those moments, allow myself to feel all the feelings, take a deep swallow, and move on about the day. Upwards and onwards. One foot in front of the other. Writing this whole essay in itself has been cathartic!

I’ve never been one to be religious (I thank Catholic school for curing me of Catholicism). Surely there’s something bigger than us, a reason for why things happen, or at least we cajole ourselves into believing that. I’d like to think shit just happens. Simple as that. Horrible things happen to good people all the time. I don’t necessarily attribute it to one deity or another. It’s just shitty luck. Having said all this, I believe in Karma, the idea that what we do, how we treat people, what we put out, can ultimately impact you in some way from infinitesimally small to life changingly big.

So here I am, hat in hand, pride at my side, asking you for assistance. Any small donation will help us a long way. The medical bills have started, the hotels, the trips to Miami (because everything is being done in Miami), the MRIs, the mountain of bills yet to follow. If you can’t donate, no worries! a kind prayer to the deity of your choice or positive vibes sent our way would be greatly appreciated. If nothing else, we’ve raised awareness on Retinoblastoma. Fun fact, unbeknownst to us, Daisy discovered the cancer at the beginning of Retinoblastoma awareness week!

Thank you again,

The Herbas’