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!