Thursday, April 21, 2016

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 2ndto 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!” 




1 comment:

Lindsay Yaggi said...

So courageous!! I'm extremely happy the procedure went well and Neve prevailed once again without a doubt:) She's incredible. Kids follow the lead of their parents. They sense their strength and attitude. Neve has certainly sensed your positive attitudes and determination to persevere. You are doing an amazing job! So proud of you both Maggie and Clay.
xoxo