Update on Neve

Dear Family and Friends,

We write today with some unfortunate news about our four year old daughter, Neve. Some of you are already aware and others are not, so bear with us as we'll start from the beginning and give you a complete update of where we are today. 

Several weeks ago we noticed a white spot in the lower quadrant of her right pupil so scheduled an appointment with a pediatric ophthalmologist.  On September 23^rd we took her for an initial examination and the doctor was concerned enough to immediately refer us to his partner who specializes in eye cancer.  A lot has transpired over the past week and as of today, October 1^st, we are one week into Neve’s positive diagnosis of intraocular retinoblastoma.  

It has been a whirlwind of multiple doctor visits, several examinations including some under general anesthesia and an MRI to determine what the tumor is, if it is anywhere else in her body and how best to treat it.  The good news is that the tumor is confined to her right eye and appears very treatable. The cure rate for retinoblastoma in the US is extremely high.  The not so good news is that on an “A-E” classification scale it is classed as a group E, with A being the best and E being the most advanced. This is determined based on size and location.   She is barely an E but because the tumor has touched the lens they are classifying it as an E.  Through it all Neve has been incredible.  She hates eye drops, but she has not complained, cried or resisted any of the examinations.  Her strength is carrying us through.

Neve’s doctor in Indy referred us to the Cincinnati Children’s Hospital (CCH) as they are one of only a handful of facilities in the country doing an alternative type of chemotherapy to treat retinoblastoma. This past Tuesday we spent the day at CCH meeting with an incredible team of specialists including an ocular oncology ophthalmologist, pediatric oncologist and the chief of pediatric interventional neuroradiology going over our options. There are several treatments available but with the suggestion of her medical team she will receive intra-arterial chemotherapy (vs intravenous chemotherapy). One of the great things about intra-arterial chemo is that it is much less toxic with approx. 10% volume of chemo drugs administered compared to traditional chemo, but 250 times the potency.  The delivery process is not simple, but in laymen’s terms a catheter will be inserted into her femoral artery and then threaded through her body to a position behind her right eye where the drugs will be administered.  This process alone can take anywhere from 3 to 5 hours which is followed by 6 hours of sedation so she remains still.  Because the chemo drugs will be delivered directly to the back of the eye the potential side effects are limited to the immediate surrounding area and may include a temporary rash as well as the temporary loss of eyelashes, eyebrow and possibly some hair along her forehead.   However, this is considered outpatient surgery so she should bounce back to normal activity the following day.

Neve will likely have treatments once a month for up to six months, depending on how the tumor responds to the chemo.  If, after the first few treatments, they determine it isn’t working we will consider enucleation, which will remove the eye (and the tumor) and she’ll live a healthy, active life with a prosthetic eye.  If the tumor responds well to the treatment they estimate it will take 4 to 6 sessions. 

Another reason the tumor is classified as an E is because the tumor is shedding Vitreous Seeds into the jelly of the eye. The intra-arterial chemotherapy is not effective at attacking or treating these seeds so another option is for the ophthalmologist to inject a very small amount of the chemo drugs directly into the eye and adjacent to the seeds to destroy them.  Additionally, the ophthalmologist my choose to use cryotherapy where a small metal probe is cooled to very low temperatures and placed next to the tumor, killing the retinoblastoma cells by freezing them. It is only effective for small tumors toward the front of the eye.They will keep a close watch on these seeds throughout her treatments and determine the best course of action.

Through all of this our number one goal is to cure Neve.  Our secondary goals are functionality and quality of life followed by the third goal of cosmetics.  These goals are at the forefront of our decision making throughout this journey.  And that is what this is- a journey.  

We are working through the best way to communicate and will try to have something set up in the coming days.  We appreciate the many offers to help from those who are close by and those from across the globe. We are humbled by the outpouring of love and support that we have received.  We will be honest about our needs and will ask for help if it makes this journey easier.  As always, we are eternally grateful for the support that has been given and for the support that is coming.  Your positive thoughts and prayers give us the strength to get through this incredibly tough time.  So please continue to keep Neve, us, the boys and her doctors in your prayers.

At the core of this, Neve McGinnity Bowden is one amazing girl.  We knew it before September 23^rd, but we are seeing it every minute since then.  We feel blessed and honored to be her parents and to have her in our lives.

Her Grandmother found a t-shirt with this quote on it and we think it sums up her strength perfectly:

“And though she be but little, she is fierce”  -William Shakespeare

Fondly,

Maggie and Clay

Jackson, Myers and Neve