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.