Thursday, March 10, 2016

Left-handed knife strike for a right-handed girl


It’s been about two weeks since we traveled to Cincinnati for Neve’s EUA.  As you’ll remember we were fairly anxious about a strip of seeds in the vitreous of the eye not attached to the main tumor.  During this last visit we received bitter sweet news.  We’ll start with the good news first.  The cancer is responding tremendously to the chemo treatments!!!  All of the previous cancerous seeds that had hardened (died) have been absorbed by the body and can’t even be seen in the eye any more.  The doctors were VERY pleased with this progress.  There are a few seeds still left in the eye- but very minimal compared to where it was.

Now the not so good news.  The Doctors immediately noticed her retina has become partially detached as a side effect of the treatments.  The means there is fluid in between the retina and the back of the eye and the pressure in the eye is really low.  Basically, her eye has been through the ringer and is tired.  There is a process where cells constantly flow into the eye to keep the pressure where it needs to be in the eye.  This process has stopped working for Neve.  The Doctors indicated that they really don’t know what will happen, but given the response so far, they decided to give her eye a rest and an opportunity to heal.  They can’t guarantee that the retina will heal but are hopeful.  So the only treatment Neve received that day was a slow-release steroid above the top eyelid into the eye to help reduce swelling until our next appointment.

We met up with Neve in the post-op recovery area.  Our nurse was so wonderful.  She was patient with Neve and helped provide all of the things Neve normally asks for- Apple Juice, Water, Gatorade, popsicle, and graham crackers.  We knew things were looking up when Neve asked for a cheeseburger!  We were so impressed with the anesthesiologist as well when he came back to check on Neve and to see if we had any questions before we left.  So far, this has been the best post-procedure recovery yet.  

After Neve was feeling better, we went down to the HemOc clinic to meet with our oncologist.   As usual, there was a team of people that came in our room to meet with us.  As you may remember, our Oncologist is the one that helps interpret everything from the other two teams of doctors and helps guide us on our path.  It was very helpful to talk through where we’ve been, where we are, and where we’re headed.  He reminded us that during our first conversation six months ago, we set out three goals in priority order.  Goal #1- We cure the cancer.  Goal #2- we focus on the best quality of life for Neve. Goal #3- We discuss cosmetics.

With this reminder, we are very close to accomplishing Goal #1.  We need to keep Goals 2 and 3 at the forefront over the next six months.  So at this point we are praying that the cancer goes away entirely and stays away and that her eye heals.  Please feel free to join us in those prayers.

Since we’ve been home, it’s remarkable how great Neve has been feeling.  It makes us realize how tough the other procedures really were on her body and yet she never complained.  She’s back to skipping, she wakes up in a great mood, and she never mentions that the light in the room is too bright.  

We aren’t quite sure what vision she has, if any, out of the right eye.  Regardless, she’s not letting it slow her down as she’s really learning to adapt.   She continues to amaze us.  Just when we have moments of sadness about what life has dealt us, she does something so remarkable that washes away all the tears and fears.  Last week she had her Crouching Tigers promotion ceremony where she chopped a board in half with a left-handed knife strike.  The most amazing part is she’s right handed!  It was one proud moment for mom and dad!

I know so many of you wonder how she is doing.  Some of you send notes and cards and others may just want to give us our space.  We completely understand.  But we want you to know that her strength carries us through each and every day.  She really is a fierce little girl!  We knew it six months ago when this all started, but it’s incredible how much she’s grown and continues to fight the hard fight.  

We head back next week for her six-month MRI and another Exam Under Anesthesia.  We’re really hoping those final seeds are gone and the retina is showing progress toward healing.  Thank you for your continued positive thoughts and prayers!