Celebration day!

It happened!  We made it!  Blink it’s here.  Today marks Neve’s ONE YEAR Cancer-Free Anniversary!  We’re not really sure what the protocol is for this kind of day.  But for those of you who know us well- know we turned it into a PARTY!  Balloons, donuts, ice cream and of course crowns.  Anyone celebrating this day needs a crown, right?

We hope you take a moment in your day to reflect on something positive, something you are grateful for, something you’ve worked hard for, something you’ve overcome or even something that makes you smile.   Neve is our shining example of all of those things.  And this mighty six year old has so much to teach all of us.

Sorry it’s been awhile since we’ve updated, and there’s a lot to share, so we’ll do a mid-year re-cap through the next few posts if you’d like the details.

In the meantime, we would be remiss if we didn’t share that September marks Childhood Cancer Awareness month.  We plan on going Gold in support of some of our favorite organizations: 

-         The Jessie Rees Foundation.  They spread JOY to kids all over the country who are battling this awful disease.  On Neve’s birthday, the Bowden kids and their Tittle cousins created personal notes to be delivered with a Joy Jar to children battling cancer in hospitals.  It felt good to give back to others while celebrating a birthday.   Visit their website to see how you can help kids NEGU!

-       St. Baldricks Foundation:  In March, Neve served as an honored kid at our school’s very own St. Baldrick’s Day.  This organization helps fund pediatric cancer research.  Two of our friend’s families have their own Hero Fund.  To learn more about their story plus ways to support, visit their webpages:

o   Jack’s Pack- We still have his back

o   Be Brooks Brave

As you’ll see in the August post about her cataract, we have a few more hurdles to jump for Neve.  Thanks for taking a moment to join us in celebration today.  

August 2017 | Cataract Surgery Update

Neve turned six on August 1^st!  It was a wonderful day celebrating this spunky girl.  However, we were especially excited to welcome six as it marks one of the first milestones she has achieved where the risk of recurrence drops significantly.

The next day, August 2^nd, we traveled to Cincinnati for her cataract procedure.  The boys joined us this time, which was nice for Neve to have her brothers there too.  The procedure went really well.  The doctor reported that there was an outer layer of basically scar tissue developing that he was able to clean up and repair.  He had to approach the procedure from a different angle than intended, but was able to accomplish the procedure successfully.  Little did we know the hardest part was yet to come.  Neve needed to keep her eye patch on overnight and refrain from active movement.  For a girl who skips everywhere, I have to admit she did a great job of following instructions.

We stayed the night in Cincinnati as Neve had a follow-up appointment the following day.  The kids loved staying in a hotel.  It didn’t matter where we were, as long as there was a pool and a smart TV with Netflix, they were living large.

During the follow-up appointment we talked with the Dr. about the current status of Neve’s vision.  The good news is that she has some vision, but the tough part is that with prescription she can only see large letters four feet or less in front of her.  The Dr. prepared us that we may need to consider patching her good eye to help strengthen the right eye. There was a lot to digest about what was to come.  We decided to focus on the immediate and ensure Neve did the right things to heal from the cataract procedure.  Neve received the all-clear to begin skipping again.  YAY!

The following week was mainly focused on keeping Neve still, copious amounts of eye drops, and keeping her eye protected with her glasses during the day and a protective patch at night.  Clay ended up taking the boys to WI for Granny’s birthday weekend, while Neve and I stayed back to help focus on her healing.  It was hard not being in WI, but a trip to the Cake Bake Shop certainly helped!

August 8^th took us back to Cincinnati for her one-week follow-up.  Dr. Yang examined Neve’s eye and it was healing right on track.  As a result, he recommended we begin to patch her left eye on a regular basis.  For the patching to have an impact, it is recommended to patch 4-6 hours a day for up to six weeks.   That timing is considered one cycle.  Depending on how the first cycle goes, it may be necessary to complete two or three cycles.  It was a lot to take in and we were not sure how we were going to make it work, but we knew we had to attempt the patching to give her right eye a shot at the best vision possible.  

Neve received a new prescription for the right lens which we needed to have filled as soon as possible in order to begin the patching process.  Who knew that the type of lens she needed was not something commonly carried at your neighborhood Lens Crafters.  Over the course of the next five hours, we visited one Cinci Lens Crafters, had her prescription filled only to find out there was a defect in the lens and they couldn’t sell it to us. At this point we decided to head back to Indy and deal with it when we got home.  To be proactive we started call Indy Lens Crafters from the car; we called not one, not two, not three, but FIVE Indy area Lens Crafters only to find out that NO ONE carried the specific lens she needed.  We stopped on I-70 and called on more Lens Crafters stores in Cinci until we found one out near Kings Island that had the lens in stock.  Not only did they have the lens we needed but they could process our order so everything was ready to go when we got there.  Thank goodness for Hannah at that store.  She saved our day.  We went from hating Lens Crafters to loving them in a matter of minutes. 

The next few weeks were filled with eye drops, patching and back to school.  Ripping off the summer bandaid is hard enough.  Managing all the eye care has added a whole new level of focus to our days.  We keep reminding ourselves that this is only temporary and it’s so worth it to give her eye the best opportunity for improving her vision.  Through it all Neve has been such a trooper.  She never complains about the patch and is always ready to receive her eye drops.  In fact, over these four weeks, she’s figured out how to maneuver around the house with her patch on, essentially sightless, using her heightened sense of hearing, smell and touch.

August 29^th we headed back to Cinci for her four week follow-up.  The Dr. examined her eye and was surprised to see that two areas of the new lens are sticking to the iris preventing the pupil from fully dilating.  As a result, he recommended an intensive eye drop regiment of a combination of three different eye drops to help loosen those two areas.  We will continue these drops over the next 10 days.  If it doesn’t work, we may need to have another procedure to address the “stuck” areas. 

During this visit he also tested her vision and it doesn’t appear to be much changed; however, we have noticed that she seemed to be able to view the images more clearly than before.  He instructed us to keep up with the drops and continue the patching.

To be honest, we felt overwhelmed at all the care her eye needs over the coming weeks.  We have a massive spreadsheet to help track what’s happening and when, which drops are needed at what time.  We know we can do it.  She’s come this far and has overcome so many hurdles.  We know she’ll face this one head on as well. 

As we head into the next few weeks, we are praying for patience - patience with the process, drops, patching and with each other.  We also pray for healing of the eye after the cataract procedure and healing of her vision in the right eye.

Thank you for being with us on this journey.  Your love and support help in more ways than you know.    

June 2017 | Office Visits and MRI Updates

The end of June included Neve’s very first office visit with her main doctors since our initial consultation.  It was so great not being stressed about anesthesia as we made our way to Cincinnati.  Neve still skips her way through life, which helps ease the anticipation of these appointments.  During this visit, the doctor indicated that everything is looking great in terms of the cancer remaining dormant.  Everything looks so good that Neve’s check-ups are being spaced further apart to every 3-4 months.  It is such a relief knowing that she’s moving closer toward fully healed.

A few days later Neve had her six month MRI and appointment with her oncologist.  We received a great report that everything looks exactly the same as six months ago—brain clear, right eye clear and left eye clear.   This means that we are getting closer to a few major milestones:  Neve turning six and two years after her last chemotherapy treatment.  Neve turns six on August 1^st and her two year post-chemo is the end of February 2018.  Neve will have one more MRI sometime between December and February and then move to an annual MRI and appointment with Oncology. 

When we heard this news, we were immediately taken back to our very first meeting with Dr. Geller.  In that appointment, he shared that there will be two major milestones to achieve—two years no chemo and Neve turning six.  We really can’t believe that we are so close!  It’s within reach and just what we needed to help approach her next hurdle of the cataract procedure.

In June, Neve also met with Dr. Yang who we were referred to for her cataract procedure.  Our consultation with him was very informative and helpful to understand what to expect post cataract surgery.  The procedure may or may not help with her vision, but it will absolutely give the doctors a clear view of her eye for future examinations to ensure the cancer remains dormant.  We, of course, hope that the cataract procedure will help bring strength to her right eye vision.

During this appointment, Dr. Yang gave Neve a prescription for glasses!  The main reason for the glasses is to protect the left eye, her healthy one.  Once she has the cataract procedure, then the right lens will have a prescription to help with vision.  Picking out glasses was so fun!  Neve picked out not one, but two purple pairs! You always need a backup right?  Just in case.

April and May 2017 | Final Days of Kindergarten

April and May were filled with enjoying the spring days, Myers’ First Communion and Neve wrapping up Kindergarten.  Spending this time together as a family is truly what we needed.  We’d much rather celebrate these milestones than be focused on EUAs, Eye Drops and Chemotherapy.  A few photos capturing these moments below.   

March 2017 | Retina healed

In early March, we went for, what would be her last, Exam Under Anesthesia.  We weren’t sure what the news was going to bring, so we were pleasantly surprised to hear the report of Neve’s retina finally being healed.  The fluid in her eye had re-absorbed back into the body and the scleral buckle worked!

However, they reported that her cataract in the right eye was back.  So they gave us a referral to another doctor within the Cincinnati Children’s system.  He happened to also be in surgery this same day and was able to give a consult while Neve was in the OR.

Our next steps will be to have the cataract surgery and then to see what the vision in her right eye will be.  They are hopeful she will have some vision to assist her with depth perception and peripheral vision.

The rest of March was filled with school-based activities and anticipation of Spring Break.  On St. Patrick’s Day, the kids celebrated at school with St. Baldrick’s day.  Neve was one of the honored kids and helped encourage kids who were shaving their heads to raise money for pediatric cancer research.  It is one of my favorite days ever at STA.    

January | A New Perspective

As we enter 2017, we have a renewed sense of joy and perspective.  We’ve made it through some very tough times and while we’ve been forthcoming on this blog, there have also been some extremely low periods.  We’ve relied on your prayers and support, the strength from each other, and Neve’s positive outlook.  And we have learned a lot from how Neve handled herself with grace and determination.  I’m sure we’ve said it before…but we are so thankful to be her parents.

We will do our best to keep you updated along the way, but please know that no news is good news.  Most of all, thank you all for your support and prayers.  It’s been amazing hearing all the ways you’ve kept Neve in your thoughts.  And please know, if we can be of help to anyone by sharing our story, we are happy to do so.

December | No time to rest, it’s Christmas!

When did December get here?  Seriously!  We returned home from our trip and all of a sudden it’s December.  So much  to get done - finish up year-end work projects, get ready for Christmas, school plays, Santa visits, Elf hunting, cookie making, seeing friends and family.  You all know how this goes!  Neve handled all of it with grace and joy.  We really felt the magic of the season this year, with so much to be grateful for. 

December 27^th we were back to Cincinnati for her MRI.  We made the trip a day early so we could stay with our Ohio friends.  Neve has been begging to see Ava for months.  I can’t believe it had been a year since they’d seen each other.  Just like old friends they picked up right where they left off.  We can’t wait to see them again soon.

The MRI was another easy procedure.  The boys came with us this time since they were out of school and have been begging to come with us.  They got to meet Neve’s oncologist who is wonderful.  He reported that everything continues to remain stable.  He wants to see her two more times in 2017 before he feels confident that we’ve reached the next milestone.   

The last few days of December included Neve losing her first tooth and spending some great quality time with our WI family over NYE.

November | I’m a Wish Kid!

November was filled with anticipation for our Make-a-Wish Trip Disney.  Before we get started just have to say what an incredible organization Make-A-Wish is and how truly amazing the volunteers at Make-A-Wish and Give Kids the World are!  They had everything planned for us.  Now, those who know me well know I had a hand in making sure things were even more planned :)

Prior to our Disney trip we had an EUA in Cincinnati.  The doctors were able reaffirmed that Neve is still cancer-free but they were expecting her to have more vision in her right eye.  Unfortunately Neve’s cataract has redeveloped, which is partially contributing to her lack of vision in that eye.  The good news is that it can be fixed, but we need to wait until she’s been at least a year out from her last chemo, which was in Feb or March.  So sometime in the first Quarter of 2017 she will have an EUA and then after that we can schedule cataract surgery.  It is likely Neve will need glasses for a few years, which she’s pretty excited about!  Wearing glasses will also help protect her left eye from any possible future injury.  When we think back to what we’ve been through, this seems surprisingly manageable!  They also were comfortable to push out our next EUA for four months.  It’s hard to even remember being there every 2 or 3 weeks. 

We got home from Cinci just in time to organize and pack for our Make a Wish trip to Disney.  Everything about our trip was, well…magical.  That may sound like a cliché - but it is so true.  We were given the red-carpet treatment every step of the way. 

Like many of you, I visited Disney as a kid (Clay did, too, actually- all the way from NZ!).  I have fond memories of It’s a Small World, Peter Pan and horrifying memories of the Haunted Mansion.  We even took the boys when they were 4 and 2 and I was pregnant with Neve.  However, this trip changed my perception of Disney.  As parents, the best gift of all was watching all three of our kids experience the wonder.  It’s that feeling of love for your kids and the constant hoping that time will slow down so you can savor every ounce of their being.   Each of our kids gave us deeper glimpses into their personalities, which will be our best keepsake of all:

Jackson:  Turned 10 on our first full-day.  We spent the entire day at Universal studios.  Throughout the week we spent a lot of time with our arms around each other.  He’d often turn to me and say, “I love you, mom.  I love you, Dad.  I’m so thankful we are here together.  Please thank the people from Make-A-Wish.”  Oh and let’s not forget the roller coasters. This kid takes after his dad with a newfound love of them.  I hope he’ll never forget how tight I squeezed his hand as we went flying over Sea World on the “Manta”.  I’ll never forget him calming me down while he still managed to scream at the top of his lungs.  

Myers:  So many amazing things to say about this kid.  He is our literal one.  He realized how special we had it as we used our Genie Pass to by-pass everyone waiting in line.  He’d say, “We’d better enjoy this now b/c we’ll never have this opportunity again!”  This is also the kid who savored every lick of ice cream we had for breakfast most every day.   Myers handles being the middle child so wonderfully.  He’s a great younger brother to Jackson- always looking up to him and finding ways to make him laugh.  And he is an amazing older brother to Neve.  He looks out for her in a way that makes my heart swell.    

A favorite memory with Myers was on the Safari at Animal Kingdom. 

Myers: “MOM!!  I’m SO glad we came here.” 

Me:  “Why buddy?”

Myers:  “Look how amazing that Giraffe is!!  I’ve NEVER seen a Giraffe up close before!”

Me:  “Sure you have.  You’ve been to the zoo.”

Myers:  “But this is the SAFARI, not the zoo.  How incredible is that Giraffe?!” 

You are right, buddy.  It is all pretty incredible.  And so are you.

Neve:   I’ll just say it bluntly.  Neve rocked Disney.   This girl was so proud to be a wish-kid and was happy to tell anyone who asked.  She loved that her Wish Button is what allowed us to have ice-cream all day long at the Give Kids the World Village.   Watching her meet the characters was enchanting.  And helping make her wish come true brought many tears of happiness and relief.  Neve became Elsa by getting the full-treatment at the Bibbidi Bobbidi Boutique.  Neve got to meet Elsa.  And Neve got to learn Elsa’s powers.  It was the most magical encounter I’ve ever seen.  She grinned ear-to-ear.  I found myself taking so many pictures just to capture the joy on her face.  It was a moment of closure for us in so many ways.  And then, of course, we purchased an obscene amount of souvenirs and used that Genie Pass to ride the Frozen ride over and over and over!  Because we could! 

 Before we end the Disney re-cap, we do have some thanks to share:

•        Make A Wish:  Thank you to our volunteers, Tiffany and Lisa, who helped make this happen.  Thank you to Schahet hotels for raising money for Neve’s wish.  Thank you to everyone who supported our journey with a gift to Make A Wish. 
•         Give Kids the World:  What an amazing place.  We are so grateful such a place exists to provide an amazing vacation to so many deserving kids and their families.
•         The Potts Family:  What a treat to spend a few hours with you all.  We’ll never forget our Splash Mountain and Thunder Rail Road fun!
•        The Williams Family:   Was so great running into you.  Thanks for the tips and for the friendly faces on our travels home.  Not sure we would have made it on that plane without your help J

   One final photo.  This is one of our favorites of our sweet girl.  It speaks for itself. 

October | Fall Fun

In all honesty, October was filled with school, soccer, fall fun, Halloween galore, more soccer and a trip to WI to see family.  It feels good to be back into a normal crazy life.  Although the hectic kid schedule is enough to wear us out, again, when put into perspective we will take it.  A year ago Neve was in the hospital & under anesthesia every 2-3 weeks, chemotherapy every 3 weeks, weekly blood tests, getting poked, prodded and MRI’s -  she was tired, weak and had no energy.  But in all her grace, she never complained.  A year later, seeing her energy levels back to normal, watching her skip everywhere makes us realize how just horrible she felt.  So we face our “busy” schedule head-on while keeping perspective about the things that matter most to us in this life.

September | Childhood Cancer Awareness Month

This is a post I wrote on my facebook page.  It sums up our frame of mind for September 24^th the one year anniversary of Neve’s Diagnosis:

“I've been thinking a lot about perspective. Here are these three ready for a full weekend of soccer. You know what it took to get this shot- finding three uniforms, socks, shin guards, cleats, water, "smile! Like you like each other!"... Almost got there.

But I'll take every ounce of that. Because these aren't real problems or stressors. I know there is so much worse going on in the world and my heart aches for that.

However, we celebrate this day. One year ago today we faced any parents' worst nightmare--"you daughter has cancer." Our world came crumbling down. I'll never forget that morning. I watched her go back for her exam and knew our lives would never be the same from that moment on.

In a way, there was a sense of relief knowing they knew exactly what was wrong, but also a pervasive amount of fear. We faced that fear head on because all we could do was help her fight. And that she did. All three of these kids did.

Over the past year we've been forced to focus on getting her cancer-free. And she did it!! As we get further away from being in the thick of her treatments, we are getting back to more normal life. But we try to maintain perspective about what matters and what doesn't.

I'll take hunting for soccer gear down to the last minute any day over chemotherapy. #perspective #childhoodcancerawarwnessmonth”

 

August | Officially Cancer Free!!

Early August was mostly about recovering from vacation and celebrating Neve’s 5^th  birthday.  Oh, and starting Kindergarten!  What a wonderful few months.  This is what we should have been focused on, right?!

August 31^st we headed back to Cincinnati for an EUA.  We have been praying for the fluid to reabsorb into the eye, the pressure to remain normal, and for the cancer to remain gone.  We met with the doctors after the exam and they gave us the most amazing news yet.  Neve is officially cancer-free!  Based on where we’ve been since Feb/March I had been wondering if this day would actually come.  People talk about their day, but we have been approaching this for months but not hearing those exact words.  But boy did we hear them.  The doctors said they rejoiced in the OR with their team.  It was even more special knowing that the team in the OR had all been on Neve’s case at one point in time during the past 9 months.  They said they don’t often have these days so they took a minute to celebrate for us.  

During our meeting with them, they revealed how serious Neve’s case really was.  They thanked us for trusting them and working together to find a way to heal and keep her eye.  So while she still has a ways to go toward being able to see, the steps we’ve taken have proven successful in her treatment.  In hindsight we realized how grave the situation was a year ago and are so thankful for the care we’ve received from our doctors both here in Indy and in Cincinnati. 

While Neve loved the Walk for Wishes Day, for us, this was THE BEST DAY EVER!!!

July | My frog does ballet!

We spent most of July on some form of much-welcomed vacation.  We traveled a good portion of the upper-Midwest to see friends and family and to have some great quality time in the car together.  Yes, we said it!  We actually got along and had FUN in the car.  Sure there were arguments over the small things like being in each other’s space, who ate the last Oreo, and electronics not being charged.  But we will fondly remember the family, friends, fun and beautiful landscapes from this summer. 

Our travels took us to Lake Maxinkukee, Janesville/Edgerton WI, St. Germain WI, the UP, Mackinaw, Pentwater, South Bend, Camp Eberhart and Lake Lemon all in July.  

Lots of driving, packing, unpacking and laundry - but lots of great memories too.

One of my favorites was at our friends’ lake house in Mackinaw.  After 7 hours in the car we escaped to the beach and lake for much needed stretch, swim and beverage.  The kids found lots of frogs hopping on the beach.  Neve caught one and didn’t let it go.  She held on to it for two straight hours!  I’m not sure how the frog felt about this newfound friendship.  Especially when I heard Neve exclaim proudly to her brothers, “MY frog does ballet!”  I looked over and she had her frog doing plies in her hand.

June 2016 | The Best Day Ever

On June 20^th & 21^st we traveled to Cincinnati for an MRI of Neve’s eyes and brain.  She is under anesthesia for the MRIs, but they are fairly quick compared to other treatments.  Her recovery is very fast.  We often reflect back that a year ago we’d be freaking out about any of our kids having any sort of anesthesia let alone an MRI.  Now it just feels like the least painless procedure she’s had all year.

We received a good report.  Her right eye shows no signs of the old tumor growing, no new tumors, her left eye and her brain remain clear.  For two years they want MRIs every six months to ensure everything remains stable.  This milestone coupled with her turning six in 2017 will significantly reduce the chances for recurrence.

During this visit she also had an Exam Under Anesthesia (EUA) to look at both of her eyes.  The scleral buckling procedure continues to show the retina healing.  However, there remains a thick, gunky fluid in her eye so they can’t get a clear look at the dormant tumor or to see if there are any new seeds.  Nonetheless, they give us the go-ahead to push the next appointment out to 8-10 weeks.  This is a huge relief as it allows us to enjoy summer!

There’s no slowing us down as June 25^th brings the Make-A-Wish Walk for Wishes.  So many of you provided support to our team’s effort and we were recognized as being the number one fundraising team there. Thank you!!   Neve was SO giddy to be a wish kid and have so many friends and family there with her and for her.  We even made the local news:  http://cbs4indy.com/2016/06/25/hoosiers-wake-up-to-walk-for-wishes-to-help-kids-with-life-threatening-illnesses/

Neve declared it THE BEST DAY EVER!!

Courageous, Spunky, and Secure

Last week we received some wonderful news.  After Neve’s exam on Friday, May 27^th, her doctor reported that her eye is the best he’s seen it in the recent past!  The scleral buckling procedure is working and the retina is healing around all of the edges.  It is not 100% as there is still fluid behind the retina, but the doctor indicated that it will just take some time for that fluid to reabsorb into the body. The pressure in her eye is back up to 12; anything over 8 is considered good.  And more importantly there continues to be no active cancer, no new growth and no visible seeds.  For the few days leading up to the procedure, Neve had been complaining of pain in her left eye (her good eye) so the doctors checked and were able to confirm that the left eye was clear and healthy.   They also conducted a refracting exam on the lenses of both eyes, which indicated that they are both healthy with no need for glasses at this point.  We go back again in about four weeks for another EUA and without any changes will move to every 2-3 months between exams.

It would be an understatement to say that we have had a huge weight lifted off of our shoulders.   I sat in the waiting room and sobbed tears of immense joy.  Overwhelmed with emotion, I savored every ounce.  In all truthfulness, there have been three times during this journey where I’ve felt like I’ve been outside of my body.  The first when she was diagnosed, the second when we learned the large tumor was responding to the Intra-arterial chemo and then after this appointment.  We know we’ve been headed toward this direction for a few weeks, but we also knew there was only about a 70% chance of the buckling procedure working.  So hearing the news that it was working and Neve’s eye was healing was pure music to our ears.  For the first time in 10 months, we are able to breathe.  

Someone asked us if Neve understands the good news…and we think she does.  However, we’ve not let her carry the weight of her cancer.  We’ve remained outwardly positive while praying for the best possible outcome.  So while the good news brings many answered prayers, Neve just continues to embrace life.  She is so very excited to start Kindergarten in the fall and this summer she will be busy with camps, swimming, dance, play dates and keeping up with her brothers.  At her pre-K graduation last week, her teachers described her with three words that we think fit her to a T:  Courageous, Spunky and Secure.  If she’s mastered these at the age of four, we can’t wait to see what lies ahead for her.

It's good when it's like this- and it's like this right now

This month has been focused on healing.  Neve’s last EUA in early May showed initial signs of the procedure to seal the retina to the eye wall was working.  The fluid was still present and the eye pressure was unfortunately back down to four.   The doctors decided to let nature take its course and allow a few more weeks for the retina to continue to heal on its own.    While we knew this procedure was one that has been around for many years, it is one that they’ve only conducted with one other child with retinoblastoma.  So we are just taking this day by day and allowing the healing process to take its course.  

 

The best news we received that day was the one remaining cancer seed was not visible during this EUA.   She hasn’t had any chemotherapy since Feb and isn’t in active treatment according to her Oncologist.  We have moved to seeing him every three months now.  However, she hasn’t been diagnosed as cancer free.  So she will continue to have regular EUA’s every 3-4 weeks and eventually those will be spaced out every 6 weeks, then 8 weeks, etc. 

 

The time we’ve had together as a family this month has been very special.  We’ve met with Make A Wish and are actively working on a wish for Neve.  We’ve celebrated Mother’s day and many end of the school year activities.  Tomorrow Neve is graduating from Pre-K at Beth-El Zedeck.   This is a place that has become near and dear to us and has been Neve’s saving grace throughout her journey.  We can never thank the teachers and families enough for everything they’ve done.   

 

This past weekend we had an incredible time at the Indy Eleven Soccer Game.  At the very last minute, we decided to head downtown and lucked into free tickets standing outside of the box office.  The tickets were center field, second row.  The young man who gave them to us used to play with several of the players on both teams over in Europe.  He now is studying at a Christian University in Northern Indiana and travels to other countries teaching the word of God through soccer.  The game itself was incredible and the Indy Eleven beat Minnesota who is the top-ranked team.  After the game we thanked the person who gave us the tickets and shared Neve’s story.  We were on cloud 9 and wanted him to realize the good deed he had done.  He let us know he will pray for Neve and then took our kids down to the front row and called some of the players he knew over to meet them.  He happened to have a Sharpie so the kids got their shirts signed.  The looks on their faces were priceless.  It was one of those moments where we wanted to stop time and breathe in every last drop of the goodness.  On the drive home we were all in awe of what just happened.  It was a moment of divine intervention.  A phrase I’ve heard recently captures this evening perfectly.  “It’s good when it’s like this- and it’s like this right now!”

 

Life is short.  We all have stresses and hardships, whether big or small.  I’ve heard from several of you over the past few months about the strength of our family.  It means so much hearing that from you.  But all we can say is we are just living in the moment, keeping positive thoughts, and placing our faith in the Lord. 

 

We head back to Cincinnati on Friday for another EUA to see how the Retina is healing.  We are praying for healing of the Retina, reduction of fluid in the eye, for the pressure to return to normal and for the cancer to go away and stay away.  So while we pray for that, we focus our energy on moments of pure JOY because truly that is what matters most. 

She's got Courage!

We are back from Neve’s Scleral Buckling procedure and our girl was in really good spirits before and after the surgery.  As we were the last scheduled case of the day, we ended up waiting longer than normal before they were able to start so Neve and Clay spent some of the time practicing her jumps! 

It was nice for the nurses and the doctors to see the spunky side of her personality.  We also realized that we’ve become such regulars at the hospital that there are a small team of nurses who know us and even if they aren’t on her case, they always stop by to say hello.  One of my favorite moments was the waiting room receptionist giving us a high-five when we told her the progress Neve has made.  Connie is one of those friendly faces who directs families on where to go meet with the doctors after the procedures and where to go to find their children post-op.  These are the people who make a tough situation more tolerable.  I share this to give you a sense of the amazing level of care at CCH.  These little moments go such a long way.

Ok, back to the update.  The surgery itself took longer than anticipated, so after it was done we spent quite a while with the doctor talking about how things went, and ultimately she was very pleased with the result.  We found out that when the doctor started the procedure she noticed a significant amount of scar tissue as a result of all the cryotherapy (freezing) treatments, so she spent some time clearing that away to make room for healthy tissue to replace it.  Once she got to the point of inserting the implant into the rear of Neve’s eye, she ran into some difficulty due to the positioning of the calcified tumor in relation to the eye muscle and the retina – this necessitated cutting through the eye muscle before being able to position and attach the implant, and then reattach the muscle.  In the end, the Doctor was very pleased with the positioning.  And, perhaps the best news of the day, Neve’s eye pressure is back up to 12!  Since this retinal issue began, her pressure has ranged from zero to six, down to four and now back up to 12.  It’s a good sign that her little body is fighting hard to fix itself!  Our next step is to wait and see if the retina is able to reattach itself to the eye wall, creates a seal, and then see if the fluid reabsorbs into the vitreous.  

The other fascinating part of our meeting with the doctor was learning what can and can’t be done b/c of the cancer.  In a normal situation (where the patient does not have retinoblastoma) the doctor would have drained some of the fluid and gone in through the front of the eye to repair the retinal detachment.  However, since Neve does have cancer, she couldn’t go that route due to the possibility of cancerous cells that may still be in the vitreous fluid escaping into Neve’s blood stream.  And since we don’t know if the calcified tumor is still active or not the doctor also couldn’t remove the remainder of the tumor as that too would increase the risk of extraocular retinoblastoma (where the cancer spreads outside of the eye).  Right now it is intraocular (contained within Neve’s right eye), and has a 98% cure rate!  With extraocular retinoblastoma the survival rate drops to 50% and is not worth the risk.  Apparently they are only a few years away from being able to determine the status of a calcified tumor like Neve has.  In Neve’s scenario, if the doctors knew with 100% certainty that the eye no longer contained any cancerous cells then the dead tumor could be removed.  I certainly hope for future families that they reach that point sooner than later!  

Neve’s recovery from anesthesia was one of her best yet.  She was resting peacefully when we went up to see her in the PACU.  After about an hour she stirred and asked for some graham crackers and juice.   Neve’s eye is patched and this will have to remain for about 24 hours.  And, remember her Courage Wings that arrived with a stuffed Lion?  Well, the lion, who is now named Courage, remained with her during the whole procedure so the doctor went ahead and patched the lion’s eye as well.  Although Neve wasn’t so sure about Courage having a patch, it was just one more example of the level of care this hospital provides.  So sweet. 

 

Neve’s patch will come off this evening and then she’ll have a routine of eye drops and ointments to help her eye heal over the coming weeks.  She will also have to wear a pink metal shield to protect her eye while sleeps, goes to school and plays soccer.  They tried to find one for the lion too, but Neve got the last pink one J.  

Our next trip back to Cincinnati is on May 2^ndto get the sutures from her surgery removed.  The doctors will be checking to see if the retina has begun to heal and reattach to the indented eye wall.  If it looks like its working they will reinforce the repair with a laser to make the attachment stronger and hopefully permanent.  Then we’ll give the eye some more time to heal and get back to normal before we have to get back onto her treatment.   

We won’t lie, it’s been a long and sometimes exhausting 6 ½ months and we have had our down moments during this journey.  The road has not been easy and we have hated some of the topics of conversation that we’ve had to have with our kids.  However, we have all grown stronger as a result of this journey.  But as we told our boys, it looks like the prayers, the positive energy and the goodness being put into the universe for Neve is working!  So again, we thank you all for the continued love and help that you have been providing to Neve and to Us….we’re not sure we could have come this far without the support from our friends and family.  And although the fight isn’t over, although there have been some setbacks, we feel that we are seeing tremendous results and heading in the right direction. 

Finally, as Neve approaches kindergarten this Fall, likely the youngest kid in her class, we keep asking ourselves if she’s ready.  But we believe that this journey has more than prepared her for what is to come.  While she is working on mastering her sight words, the fact she can advocate for herself, in a hospital, to doctors and nurses about the anesthesia she wants, tells us she’s not only ready for kindergarten, but this girl is ready for whatever life will throw her.  In so many ways, her strength sustains us.  The quote we posted early on is so very fitting:  

“And though she be but little, she is fierce!” 

Courage Wings

We aren’t really sure where the weeks have gone since our last update but it’s been full speed ahead.  There’s no real reason for our lack of posting, other than we’ve had more family birthdays, Easter, another trip to Cincinnati and then a much-needed week of R&R in Florida.  

Our last update left off right before Neve’s mid-March MRI and EUA.  We traveled to Cincinnati on March 15^th for her second MRI.  Her first one was back in late September here in Indy before we met her Ohio medical team.  Fortunately, this exam and recovery were fairly quick and we were out of the hospital by mid-afternoon.  We went to the hotel and then ran some errands.  We marveled as Neve was skipping through the store- a mere few hours after anesthesia.  It made us realize how horrible she felt after all of those treatments last fall and she never complained.   And it makes us realize how strong this little girl really is.  We are learning so much from her as she navigates this entire experience.

The next day she had her EUA early in the morning.  Similar to the day before, the exam moved along quickly.   We were so pleased to learn the eye did increase in pressure from a zero last time to a six.  The change in pressure indicated the eye is trying to heal itself.  However, the retina was still damaged and the eye still had some cloudiness in it making it was difficult to see what was going on with the seeds.  Since the pressure of the eye made progress, they decided to continue to let the eye heal and re-evaluate next steps during her next EUA on March 30^th.  

We then went down to the Oncology clinic to get the results from her MRI.  The good news is that her brain and left eye are still clear.  And it is incredible to see the before and after images showing the change in the large tumor in her right eye.  The doctors are so pleased with the progress.  And, as we discussed with her Oncologist, since she hasn’t had any chemotherapy since the beginning of February, she isn’t currently in active treatment and he doesn’t need to see her again until June. This was definitely music to our ears… although, at the same time, we still haven’t heard that she is cancer free.  But we’ll take and celebrate this milestone!

In consultation with the team, we scheduled Neve for another EUA on March 30^th.  The time between these visits passed so quickly.   We did a day-trip to Cincinnati on the 30^thsince we only had an EUA and no appointments with her Oncologist.  This EUA provided some answers as to what has been going on with her retina.  Her body responded so quickly and favorably to the treatment methods.  As the main tumor in her eye shrank and hardened, it pulled three small areas of the retina with it.  With these three holes, fluid is constantly leaving the eye causing the pressure in her eye to drop back down to a four.  At its current size, the eye is like a deflated kickball. The doctors are concerned that if we leave it this way and continue waiting to see if the retina will heal itself, the eye will atrophy.  They suggested a procedure that has been around for a long time, called Scleral Buckling.  They will insert a small sponge implant in the back of the eye that will push the eye wall back into the area of the retina that is detached and seal the holes.  They are hopeful this will allow the fluid in the vitreous to reabsorb on its own and the eye pressure will return to normal.  They’ve done this procedure on one other child with Retinoblastoma and think there is a 70% chance of success.   We decided that is something worth trying if it will help her eye heal.    

Specific to her cancer, they were able to get a better view of the seeds.  Good news! They can only see one small seed that looks fuzzy.  This is incredible progress compared to the hundreds she had in her eye when she was first diagnosed.  They aren’t too worried about the seed.  We will keep an eye on it as it may respond to the residual chemo in the eye.  If it happens to touch the retina, then they will address it with Cryo and Freezing treatments.  So we are really close to all of the cancer being gone.  It’s very surreal to write those words!  While we want to celebrate, we also are keeping our head down to keep focused on the next phase.  

As we send this update it is the night before the sclera buckling procedure.  The procedure will take about two hours and she will likely have an eye-patch for about 2-3 days.  Then we go back on May 2^nd to have the small stitches removed.  We promise to provide a more timely update J.  In the meantime, we ask for your continued prayers.  We are praying for the cancer to go away and stay away, for this procedure to be successful and for her eye pressure to return to a more normal level. 

The picture I’m sharing is of Neve playing soccer tonight in her Courage Wings.  She received these as a gift from Cancer Free Kids - an organization helping to fight the fight and support researchers in finding a cure for cancer.  These wings arrived on a stuffed Lion, but Neve has chosen to adopt them as her own.  I think very fitting as we enter this new phase.  I hope she let’s me borrow them!

Left-handed knife strike for a right-handed girl

It’s been about two weeks since we traveled to Cincinnati for Neve’s EUA.  As you’ll remember we were fairly anxious about a strip of seeds in the vitreous of the eye not attached to the main tumor.  During this last visit we received bitter sweet news.  We’ll start with the good news first.  The cancer is responding tremendously to the chemo treatments!!!  All of the previous cancerous seeds that had hardened (died) have been absorbed by the body and can’t even be seen in the eye any more.  The doctors were VERY pleased with this progress.  There are a few seeds still left in the eye- but very minimal compared to where it was.

Now the not so good news.  The Doctors immediately noticed her retina has become partially detached as a side effect of the treatments.  The means there is fluid in between the retina and the back of the eye and the pressure in the eye is really low.  Basically, her eye has been through the ringer and is tired.  There is a process where cells constantly flow into the eye to keep the pressure where it needs to be in the eye.  This process has stopped working for Neve.  The Doctors indicated that they really don’t know what will happen, but given the response so far, they decided to give her eye a rest and an opportunity to heal.  They can’t guarantee that the retina will heal but are hopeful.  So the only treatment Neve received that day was a slow-release steroid above the top eyelid into the eye to help reduce swelling until our next appointment.

We met up with Neve in the post-op recovery area.  Our nurse was so wonderful.  She was patient with Neve and helped provide all of the things Neve normally asks for- Apple Juice, Water, Gatorade, popsicle, and graham crackers.  We knew things were looking up when Neve asked for a cheeseburger!  We were so impressed with the anesthesiologist as well when he came back to check on Neve and to see if we had any questions before we left.  So far, this has been the best post-procedure recovery yet.  

After Neve was feeling better, we went down to the HemOc clinic to meet with our oncologist.   As usual, there was a team of people that came in our room to meet with us.  As you may remember, our Oncologist is the one that helps interpret everything from the other two teams of doctors and helps guide us on our path.  It was very helpful to talk through where we’ve been, where we are, and where we’re headed.  He reminded us that during our first conversation six months ago, we set out three goals in priority order.  Goal #1- We cure the cancer.  Goal #2- we focus on the best quality of life for Neve. Goal #3- We discuss cosmetics.

With this reminder, we are very close to accomplishing Goal #1.  We need to keep Goals 2 and 3 at the forefront over the next six months.  So at this point we are praying that the cancer goes away entirely and stays away and that her eye heals.  Please feel free to join us in those prayers.

Since we’ve been home, it’s remarkable how great Neve has been feeling.  It makes us realize how tough the other procedures really were on her body and yet she never complained.  She’s back to skipping, she wakes up in a great mood, and she never mentions that the light in the room is too bright.  

We aren’t quite sure what vision she has, if any, out of the right eye.  Regardless, she’s not letting it slow her down as she’s really learning to adapt.   She continues to amaze us.  Just when we have moments of sadness about what life has dealt us, she does something so remarkable that washes away all the tears and fears.  Last week she had her Crouching Tigers promotion ceremony where she chopped a board in half with a left-handed knife strike.  The most amazing part is she’s right handed!  It was one proud moment for mom and dad!

I know so many of you wonder how she is doing.  Some of you send notes and cards and others may just want to give us our space.  We completely understand.  But we want you to know that her strength carries us through each and every day.  She really is a fierce little girl!  We knew it six months ago when this all started, but it’s incredible how much she’s grown and continues to fight the hard fight.  

We head back next week for her six-month MRI and another Exam Under Anesthesia.  We’re really hoping those final seeds are gone and the retina is showing progress toward healing.  Thank you for your continued positive thoughts and prayers!