Long Overdue Stella Update

Recently I have received a few emails from parents whose children had been diagnosed with a brain tumor who were scouring the internet for any information they could find and were looking for someone who had been through something similar.  I did exactly the same thing when Stella was first diagnosed, and found such comfort in talking to other parents who had been through this and whose kids were doing well.  Imagine my surprise when I realized it had been nearly 2 1/2 years since my last blog post.  Where did the time go? 

Thankfully, we are in place where things are really, really good.  Stella is healthy and happy, and after 3 years of constant medical appointments, surgeries, etc., we are in a really nice quiet period that hopefully lasts the rest of Stella's life!  Here is an update one what has happened since my last post, way back in November 2013:

Stella completed chemo on October 1 2014.  Overall, she handled chemo like a champ.  We had a few episodes where she developed an allergic reaction to Carbo, and we had to do a longer drip, but we got through it.  It was interesting though, while her hair thinned out some during chemo, she really kept a lot of her hair.  However, it really started to fall out in large quantities after chemo ended.  That was a bit of an unexpected blow!   Here she is on her last day of chemo with her awesome nurse. 

While Stella was in chemo my mother started having some medical issues (which ultimately required a liver transplant in August 2014), and I found out I was pregnant with a baby boy a few months before this, so it was a busy, busy time in our lives. (Stella's baby brother was born on March 18, 2015).  This is probably one of the reasons blogging fell by the wayside.  :-) 

When Stella finished chemo, we took a much needed vacation to San Diego (LEGOLAND, Zoo and Beach) and threw a huge "rebirth"-day party for Stella.  It was awesome.  We also put her back in preschool, which she was super happy about.  Here she is on her first day of preschool:

In mid-December 2014 Stella went on a Make A Wish trip to Disney World.  It truly was the best trip ever.  We spent time at Disney and Universal Studies, and the kids had the best time ever.  The Give Kids the World resort is such a special place.  Here is a link to a video we made for Stella's Make a Wish trip:  https://www.youtube.com/watch?v=nn2waZvqATo

Since that time, Stella has had MRI's every three months.  So far, so good.  All of her MRI's have come back stable.  We are so happy.  Her docs are about to switch Stella to an every 6 month schedule, which will be nice.  She still has to go under general anesthesia every time she gets an MRI. 

The biggest thing we have dealt with since Stella completed chemo is working on addressing the "collateral damage" (as I like to call it) that the brain tumor caused.  The left side of Stella's face is paralyzed as a result of her brain tumor, and her left eye turned inward and has no lateral eye movement, so it was basically stuck in that position.  Here is a picture of Stella on Thanksgiving 2014 (about 7 weeks after chemo ended). This shows the hair loss and facial paralysis issues we were dealing with:

We did a ton of research and interviewed several doctors who specialized in working to restore some movement to the face.  Right after Christmas in 2014, we flew to Baltimore to meet with Dr. Patrick Byrne at Johns Hopkins.  We really liked him and decided to move forward with a two step facial reanimation surgery called a cross facial nerve transfer (or gracilis muscle transfer).  In February 2015, my husband flew with Stella back to Baltimore and she had the first stage surgery where they took nerves from the back of her left calf and moved them to her face. 

 

After this surgery, Stella had a short surgery to have her port taken out, had a dental surgery (because some of her teeth needed some work on the side where her face is paralyzed), and we also did a surgery to straighten out her left eye that was stuck inward. Lots and lots of medical procedures (in addition to MRI's every 3 months). The eye surgery made a huge difference, and you can see from the below pics the positive impact.  The left is shortly before the surgery, and the right is a few hours after.  Her left eye will never be able to move laterally, and she still has trouble blinking that eye, but if you are looking at her, her eyes look pretty normal. 

Needless to say, it was a busy time, and during all this, I had a baby in March 2015. He is the cutest.  Here are some family pics from early November 2015. 

Next, in late November we went back to Baltimore to do the second stage surgery for the cross facial nerve transfer.  For this surgery they took a muscle from her inner thigh and grafted it to the (basically) dead muscle in her face, then attached the nerves that were previously harvested to the muscle. That was a tough, painful surgery, and required us to be back in Baltimore for 2 weeks. It then takes at least 6 months before you see some movement, and we are only now in the last month starting to see some movement on the left side.  Her tone, however, is so much improved.  Here is Stella getting ready to go into this surgery, and then shortly after her second surgery in November:

This was (hopefully) the last big surgery this girl will have to go through.  It has now been almost three years of tough medical issues, but we are now (fingers crossed) through it.  Stella is looking great and is a very happy, confident girl. Here she is about a month ago.  Her hair is growing, and there is a slight lift on the left side when she smiles with her mouth closed.  When her face is at rest, it looks very symmetrical. 

That is pretty much the abbreviated version of what has happened over the course of the last two years.  We are extremely thankful that Stella is now in good health and thriving.  She goes in for an MRI next week, so fingers crossed all continues to look good.