Friday, August 30, 2013

Good News, Bad News. . . .

Yesterday Stella had an appointment with a hearing doctor.  One of the side effects of her chemotherapy can be hearing loss in the upper frequencies, so they need to monitor this as well.  In addition, her tumor has impacted her 6th and 7th cranial nerves, so that the left side of her face is somewhat paralyzed and her left eye has no lateral eye movement.  The 8th cranial nerve is very close to those two and is responsible for hearing, so they want want to keep a close eye on this as well. 

Thankfully, she did well on her hearing test and is showing no deficiencies in that area at this time.  We need to follow up immediately if we see any change, and she will see this doctor again in five months. 

The one bummer is that this doctor told us, in her experience, children who suffer facial paralysis as a result of a brain cancer impacting the 6th and/or 7th cranial nerves typically do not see improvement with the paralysis.  She wanted us to be aware that this is how Stella's face will likely be for the rest of her life.  In rare cases she has seen some improvement, but it can take years of physical therapy.

That was a bit of a blow.  Her facial paralysis and left eye dramatically worsened after her surgery, and it makes me sad to think that there is little chance of improvement.  In the grand scheme of things I know it is minor - we can deal with it, and anything else, so long as she is alive.  It just makes Rob and I sad to think of how kids may treat her as she grows up because her face looks a bit different.  Most will have no idea why her face and eye are like that, and kids can be mean when someone is different.  I am hopeful that since we live in a small(ish) town and close knit community that these challenges will be lessened for her.  I also think we may be able to straighten the eye with surgery if necessary, so that is something we will look into in the future.   

We are still going to start physical therapy for Stella and have a meeting on September 12 with the Early Childhood Intervention specialist.  She will monitor Stella and will connect her with a physical therapist, and will also be there to assist if Stella shows any other types of impacts because of her illness.   

Below is a picture of Stella before bed time this week, where you can see how the tumor has impacted the left side of her face.  Even with her left side not working as well, we think she is a beauty. 

2 comments:

Unknown said...

She is so beautiful! I truly believe that in the long run it will just make her a stronger person. Big hugs.

Unknown said...

Praying for your family in this season. I attended Kaia with you for awhile back and am friends and go to church with Jenn Spohr and Shannon Minder. I just want you guys to know that many in this community are praying for you. I hope you feel surrounded in the midst of heartache.