Tuesday, May 24, 2016

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. 



5 comments:

Unknown said...

What a wonderful story, and a great experience for the whole family, Thanks for sharing....we continue to pray for Neve's full recovery!

Unknown said...

What a wonderful story, and a great experience for the whole family, Thanks for sharing....we continue to pray for Neve's full recovery!

Unknown said...

Your writing style is so captivating. What an life changing year for all of you.

Unknown said...

Your writing style is so captivating. What an life changing year for all of you.

Panharith said...

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