First round of chemo is complete!

Thank you, everyone, for the outpouring of letters, emails, texts, and calls.  We are humbled and grateful for your thoughts, prayers and love; they have definitely carried us through what was a very tough day last week when Neve received her first Chemo treatment.

On the morning of Wednesday October 7^thwe traveled to Cincinnati hopeful that she would be the second case of the day, although we weren’t entirely sure when her procedure would begin or how long it would take.  Fortunately, by 3:00 pm we were checked in and all taken back to the Operating Room to meet the other doctors and nurses that would be caring for her. Everyone at CCH has been so wonderful to both Neve and us as we ventured down this path for the first time.  Her Interventional Radiologist, Dr. Abruzzo, knowing how much see loves the movie Frozen even had an Elsa doll taped to the door of the OR.  She loved that!

Shortly after Neve’s procedure began, a few of our Ohio-based college friends arrived to provide us with hugs, laughs, emotional support and some much needed distraction.  Around 5:00 pm we were notified that the catheter had been successfully positioned behind her eye and they were able to start administering her chemotherapy, which lasted approximately 30 minutes.  By 6:30 pm she was out of the OR and being transferred to the PICU.  Dr. Abruzzo met with us to confirm that everything went to plan with no complications and that we would actually be able to leave the hospital around 10:30 or 11 pm.   We went into this day unsure of when Neve’s procedure would begin, how long it would take or how long she would need to be sedated once it was over.  We were told to expect the maximum – 5 to 6 hours for the procedure followed by another 5 to 6 hours of sedation for recovery.  So we were extremely happy that the procedure was only 3.5 hours and that she only needed to be sedated an additional 4 hours….still a lot for a little body but much better than 11-12 hours. 

It was around 7:00 pm when we got to see Neve in the PICU where she was sedated and recovering peacefully.  Another set of college friends arrived and provided more hugs and emotional support. We naively thought Neve would be completely asleep the entire time, but she did occasionally stir asking for something to drink.  This was not surprising since she hadn’t had anything by mouth since 9:30 am.  After four hours in the PICU, her sedation meds were stopped and she was disconnected from all the IV’s, monitors, catheters and breathing tubs.  We were finally discharged by midnight but having been up since 5am we thought it best to spend the night in Cincinnati at a nearby hotel.  However, we didn’t get much sleep.  We learned the hard way that Neve doesn’t do well after anesthesia.   She threw up several times in the early morning plus had an elevated temperature, which gave us cause for concern as it could have been a sign of infection (thankfully it wasn’t).  We also learned we need to travel with thermometers, Gatorade, and saltines as we couldn’t find a convenient 24 hour CVS at 5 in the morning.  Most of Thursday was a blur but thankfully the first round of chemo was complete and we made it home safely but all exhausted.    

Neve has been absolutely incredible during this whole process.  We spent the weekend recuperating and staying close to home.  Her right eye is irritated and swollen closed, which we were told could be a side effect of the chemo.  While it is certainly uncomfortable she isn’t letting it slow her down. In the big scheme of things, we know that it could be a lot worse, however, it is tough to see our little girl go through this.  We keep telling ourselves that her swollen eye is an indication that the chemo drugs were correctly delivered to the eye, that the treatment is working and she is one step closer to her being cancer free. 

As we move through each day, we hold on to the many words of wisdom that you have shared.  While we may not respond right away, please know that we read every email, text and card that is sent as it helps us to remain strong and stay positive through this difficult time.

We are grateful and appreciative of the many offers to help.  To make that part of the process easier a website has been created at:  www.whatfriendsdo.com     

Team Name:  Neve Bowden  

Link:  http://www.whatfriendsdo.com/team/1754/

Password: kickcancer

 

We will do our best to keep everyone updated as this journey continues.  In the meantime, we are going to do our best to enjoy fall, gear up for Halloween, and spend a lot of good, quality family time together.  As always, please continue to keep Neve in your thoughts and prayers.  

Fondly,

Maggie & Clay

Jackson, Myers & Neve

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