Tuesday, April 19, 2016

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 15th 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 30th.  

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 30th.  The time between these visits passed so quickly.   We did a day-trip to Cincinnati on the 30thsince 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 2nd 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!

4 comments:

Unknown said...

I'm grateful for any updates you are able to post- no one could possibly fault you for any delay when you are dealing with so much. Live is crazy busy with two kids- I cannot begin to imagine three plus an intensive health situation! Neve is amazing as always in her courage and resilience, as are you. Much love to you all. You are in our thoughts and prayers always. -Healys

Sara Glenn said...

Thinking of you all this morning! xoxo

Myra Mazzei said...

Wow! Neve is the epitome of bravery. I'm just blown away by your family's courage and optimism. Sending all our love from Chicago!

Lindsay Yaggi said...

There is so much healing and hope!! Thank you for the wonderful update. I hope Neve's procedure went well today. She is a trooper and deserves those wings!!
You guys are amazing.
We love you.
Lindsay, Mike, Ashton and Tyler