Making more progress!

We traveled to Cincinnati again last week for Neve's fourth round of treatments.  Coming off a great report in November we were hopeful for more good news, but in all truthfulness, we were also preparing ourselves in the event the tumor didn’t respond as well.     The morning of her EUA, we had one of those mornings.  You know, the kind where nothing seems to go your way?  Nothing major happened, by any means, but random things just kept happening to us.  We both had a level of anxiousness, but certainly didn’t want Neve to catch on to it.  (Fortunately, she had lots of giggles the night before with her new bestie in Ohio.)  

 

We’ve started this tradition where we try not to eat or drink before her procedures because we feel it isn’t fair to her if we eat or drink in front of her.  However, being the second case of the day, things were running behind.  So we weren’t able to see Neve off until 11:30 am, an hour after her start time.  The theme of the day was hangry.  By the time we left her, our hangry had settled in and little did we know Neve’s version of hangry would come back to haunt us.  (More on that in a bit).

Fortunately, once we said our “see you soons” to her, we were able to have lunch and calm down a bit. Our primary Ophthalmologist was ready with a report only 45 minutes later.  He was very optimistic indicating there is continued improvement with the tumor showing reduction and the seeds floating in her eye are now turning shiny.  Apparently this is the goal.  A few of the seeds still appeared fuzzy so his partner was performing the intraocular chemotherapy treatment and the cryotherapy.   The Dr. was very optimistic and recommended her for her fourth round of chemo the following day.  Shortly thereafter we met with the partner, and she indicated that Neve really has come a long way. She admitted that after the first treatment they were not very encouraged.  However, they now feel 100% positive that we are ahead of the tumor and it is controlled.  They were once very worried about the seeds but have seen significant change with positive response to the treatment.  They are confident they can save her eye.  Truthfully, this was the best news ever.  We sat in the waiting room with massive tears of joy. 

 

Within a few minutes they called us back to be with Neve in the recovery area.  We quickly realized she was all out of sorts from the anesthesia.   Poor girl had a rough wake up from this procedure.  Her hangry had settled in for the afternoon.  This four year old was CERTAIN that she didn’t know what she wanted.  And everything we offered was clearly not an option.  After 30 minutes, we asked to be discharged so we could just move along with her day, cuddle with her and get her to calm down a bit.  

We then went to meet with our Oncology team.  They have been so wonderful to us and spent a great deal of time answering our questions and working through our concerns to ensure Neve has as much comfort as possible.  The Oncologist reiterated that things are moving in the right direction.  He indicated that we will continue treatment until we reach the best case scenario and then do one more treatment.  In their experience, when they stop at the best case they find the tumor eventually comes back.  So their recommendation is to perform one more round beyond the goal.   

 

After the meeting, we left the hospital around four pm and stayed at the nearby hotel for the night.  We knew Neve was feeling better when she asked for pizza, breadsticks and Jello.  However, it was a fairly rough night with her waking up every few hours.   It was also a short night since we had to be up at 5 am for her 6 am arrival time at the hospital.

 

Her treatments have never been back to back days like this.  While it made sense to us logistically, we also know she doesn’t do well with anesthesia.  We made our way to the hospital where she slept for most of our time waiting for her 7:40 am start time.  Around 7 am she sat up and said her tummy hurt. She then got sick, but seemed to settle down.  At 7:30 we took her to the bathroom and she got sick again.  We were very nervous if they would proceed with the procedure at all.  The anesthesiologist spoke to her interventional radiologist who also spoke to the oncologist.  After about 10 minutes, they determined to move forward with her case.  We were worried about her, but knew the main reason she got sick was due to her procedure the day before and to her being dehydrated.  Once we left her in the OR, they spent about an hour giving her fluids to help her rehydrate. Once they got started at 8:40, the entire process moved along quickly.  In fact, one of the nurses told us it the most efficient procedure they had ever done.  

 

When we met with the doctor he reported the treatment itself was technically perfect and from an anesthetic standpoint, she was rock solid.  We were so relieved to hear this news.  We joined her for her four hours of sedation in the PICU.  Once that time was up, her recovery moved along quickly and for the first time ever, she didn’t get sick!  We were simultaneously in disbelief and relieved.  And, since she recovered so nicely, we actually left the hospital at 8:00 pm and made it home to our own beds that same night.

 

Since then, we’ve been hunkered down with the boys spending a lot of quality time together.  As Christmas approaches, we are keenly aware of the meaning of JOY during this reflective time.  While we would never wish this upon her, we are so thankful for the love and support of our friends and family.  The outpouring is astonishing.  You can get settled in such a routine and lose sight of the things that really matter in life.  “We are blessed!”  (Next time we see you, remind us to tell you the story about this quote.  It is a powerful one, and one Maggie’s dad told at our wedding.)

 

We wish you health and happiness this holiday season and in the new year.  Even though our lives have changed drastically, we truly cherish our good days and grow stronger through the bad ones.  And Neve McGinnity Bowden is one fierce little girl.  All we can say is watch out world; she has mountains to move.

 

We also need to say thank you for all the meals and baskets.  We are beyond grateful at the outpouring of support.  It definitely helps us feel less alone during this time!  Looking ahead to 2016, more dates have been opened if you are interested in helping out:  www.whatfriendsdo.com   Team name:  Neve Bowden.  Site password:  kickcancer

 

Thank you for everything and Happy Holidays.  

Love,

Maggie, Clay, Jackson, Myers and Neve

So thankful

Dear Friends and Family- 

We have some great news to share.  Yesterday, exactly two months after Neve’s retinoblastoma diagnosis, the Doctors reported that her tumor has reduced significantly!  They used words such as dramatic, excellent and remarkable to describe the progress made since last month.

What an amazing gift to receive the week of Thanksgiving.  We have an enormous sense of relief that the process is working and we are moving in the right direction.    Yes, we are shedding tears of JOY!  

Thank you for your support, care, concern, friendship and prayers.  While she isn’t in the clear yet, this little girl continues to fight and your positive thoughts and energy are carrying all of us through.

We wish each of you a very Happy Thanksgiving.  

In gratitude, 

Maggie, Clay, Jackson, Myers and Neve

“And though she be but little, she is FIERCE”  ~ William Shakespeare

Round two complete

The week of October 26^th saw us road tripping to Cincinnati twice….once for Neve’s EUA (Exam Under Anesthesia) which was done on the morning of October 27^th and then for her second round of chemotherapy on October 29^th.  Our first trip of the week was uneventful and we were able to stay with friends in Cincy who also have a 4 year old daughter.  Of course the girls became fast friends and wanted to play and even though it was 9 pm we let them stay up for a while since they were having so much fun.  We are so very thankful that Neve has a new friend and something fun to look forward to when we go to Cincinnati.  It’s now more than the place of doctors, hospitals, eye drops, anesthesia, needles, chemotherapy, feeling lousy and throwing up.  

Each time we go to Cincinnati there will be two days of appointments.  The first day will be her EUA, during which the Ophthalmologist team will evaluate how the tumor is responding, how her eye is and what the best next steps should be.  Assuming all goes well on day one, then the second day is her Intra-Arterial Chemotherapy.  

For this month, the good news was that her EUA went well and the Doctors reported that her tumor did respond to the chemo.  However, they would have like to have seen it respond more than it did.  The Ophthalmologist had expected a more dramatic reduction in size after the first round of chemo.  While there wasn’t as much progress as they would have liked, there was still progress in the right direction.  It was also during her EUA that the doctor performed the first round of cryotherapy (freezing part of her eye) in preparation for her upcoming November treatment. The cryotherapy will help during the next EUA where, in addition to checking her eye and measuring the tumor, her doctor will also be injecting chemo drugs directly into her eye to attack the vitreous seeds floating in her eye which, unfortunately, do not respond to the intra-arterial chemotherapy.   

After the EUA, we had an appointment with the Oncologist team to talk through Neve’s response to her first treatment and ways we could try to be more proactive in addressing the severe swelling she experienced in her eye.  Neve was still drowsy and sleepy after her anesthesia and we actually thought that she was asleep at one point.  One of the Doctors asked us a question, which we answered, however, right on cue Neve spoke up and corrected us all while keeping her eyes closed.  (I wonder where she gets that from J) She didn’t miss a beat.  

During this appointment, we also found out that Neve’s Chemo had been switched from Wednesday afternoon, which is what we were planning, to Thursday morning (with a 6 amhospital check-in).  Of course we rearranged everything to make it happen as a morning appointment is more favorable since it means less time for her not being allowed to eat.  All in all it was a positive, but long day. We headed back home to Indy around 2 pm, picked up the boys and enjoyed a quiet night at home together.

In preparation for her Thursday appointment (and 6am check in) we decided to head to Cincy on Wednesday night and stay close to campus.  We are getting to know our way around the hospital and felt like pros this time knowing where to park, where to go, the check in process, and what to expect with all of the questions we get asked over and over again, the different nurses, doctors, waiting rooms etc.  

 

While we were walking her back to the OR with the nurses, we were disappointed to find out that we would not be able to go back into the operating room with her and help her fall asleep.  That was tough, but we knew we had to stay strong so she would stay strong.  And boy did she.  It was difficulty to watch her get wheeled back into the operating room, not being with her as she fell asleep, but what we’ve learned about this precious girl is that even though she may not want to do something and even though she may be scared, she digs deep and puts on her brave face and does what is expected of her.  Her strength is incredible.  

After we said goodbye, and wiped a tear away, we headed down to get some breakfast and check in with family.  We were smarter this time and came prepared with some amazing juice and healthy food from our dear friend, Beth Smith (Beth owns a wonderful company called Simplicity.  And yes, this is a plug for them because the juices, Betty bars and food she made enabled us to eat healthy and maintain a good level of energy throughout the day.  Thank you Beth and everyone at Simplicity!)

During breakfast we received a call from Neve’s Doctor, which was very concerning as he was supposed to be in the OR.  Everything was fine; he spent some extra time reviewing her case and just wanted to clarify that we were on the same page about a component of her procedure.  While his call was not expected, it gave us some peace knowing he was taking extra time to make sure the right plan of action was in place for her.

The next 3 hours were spent in the general waiting room; thank goodness for iphones, people magazines and people watching.  Around 11am we were notified that her Chemo was complete and delivery took 27 minutes. We talked to the Doctor at noon who gave a great report on how everything went and then headed up to the PICU floor to wait for her….this space was much calmer and we didn’t realize how much we needed some peace and quiet or how hungry we were.  Again, thank goodness for packing food and being prepared…the things you learn. 

By 1:00 we were with Neve for her four hours of sedation and recovery in the PICU.  The doctors had ordered more fluids so she would be more hydrated when she woke up, which they hoped would help reduce her nausea. Around 4pmthey also administered anti-nausea medicine.  Her sedation was stopped at 5 pm and we decided not to force her awake, but to just let her wake as she was ready.  We talked to her and held her hand and she would nod her head, but she didn’t really open her eyes until after 6:30 pm.  Before they would release her the nurses said she would need to keep food down and go potty.  Around 7 pm, we knew she was feeling better when she was asking for a cheeseburger and decided that not only was she going to be Elsa for Halloween, but Mommy would also be Elsa and Daddy would be Hans.

We started food slowly with saltines, graham crackers, apple juice and popsicles.  She did end up getting sick a few times, but it was much better being in the hospital and not in a hotel. The level of care and attention in the PICU was amazing. 

It really took her about two hours to feel somewhat normal.  We had been at the hospital since 5:45am and it was now after 9:30pm, but we decided we’d like to get her home.  We would all feel better sleeping in our own beds, even though it was a 2 hour drive.  Well, we’ve come to learn that nothing is quick during discharge and we walked out of the hospital at 11:15 pm.  

The next day we all spent time recovering and catching up on sleep.  We were so happy to see the boys after school on Friday as they were to see us and their little sister.  Being the day before Halloween our goal was to have Neve rested and her energy level back up so she could go trick or treating on Saturday.  And that she did.  We attempted to have her ride in a wagon, but it wasn’t fast enough for her.  So out she jumped and raced to keep up with her brothers and cousins, with Mom, Dad and grandparents in tow. 

Truthfully, her ability to bounce back to normal is what helps us get through.  Spending time with her between appointments keeps us strong.  While we have our own moments of weakness, Neve’s attitude is incredible and inspiring.  She tells us how she’s feeling and reminds us when she needs her next round of eye drops.  

We know it’s been a while since we’ve posted.  But truthfully, we’ve been enjoying time with family, carrying on about our normal days and enjoying all the meals, baskets, notes, prayers and outreach from so many of you.  

We are gearing up for another round of the EUA and Chemo the week of Thanksgiving.  While we aren’t feeling very festive, there are so many things for which we are thankful.  I suppose for the first time in a long time, we are truly approaching this holiday with a thankful mindset.  

We will do our best to provide a timelier update.  In the meantime, Happy Thanksgiving to all of you.  We know many of you are saying prayers for Neve and our family.  We will keep you all in our prayers of thanks.  Your generosity is so uplifting.  Thank You!

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