1 Year follow-up and other stuff

Good news.

If you speak to me regularly or even hardly ever I'm sure I've barfed out how anxious I have been over Ella's one year post-op appointment with Dr. Fox.  I've had that hollow, sick, feeling in the pit of my stomach for a few months now anticipating what we would see/hear/learn about our sweet girl's condition one year later.

We went last week for the ultrasound.  I decided I need to go to radiology school because seeing the ultrasound and not knowing what I'm looking at is maddening especially when waiting for a week to sit with the doctor and read the results.  There was no calcification,  the top of the kidney looked typical for post surgery scar tissue or inflammation…. Her urine looked good, and her BP was 93/58.  Her BP has been consistently lower since the tumor was removed which is comforting.  It had always been high/high end of normal since they started documenting her BP at age 3.  Normal for her was 109/72 -116/75.

All of what we heard today was good news.

But…..
That dark, hollow, sick, feeling in the pit of my stomach that I hoped would go away is still lingering.  It was reconfirmed to me that this isn't over.  We will continue to follow up with urology bi-annually at least for another year.  Dr. Fox knows the pediatric urologist in San Diego that we will see and has great confidence in him.   She mentioned that we will get a CT of her abdomen to see if there are any more ganglioneuromas that have popped up along the path of her peripheral nerves surrounding her kidney and to use it as a baseline for future imaging.  I may have said that wrong but essentially it's totally possible for it to grow back on her kidney and/or new ones in other places.  Yuck.

Logically, after having the one tumor for likely most if not all of her life, and no others were seen in the imaging that was done prior to surgery last year, odds are slim that a new one will grow.  However,  this tumor is extremely rare and there isn't really enough data out there to predict or anticipate if her body will produce another tumor like this, not to mention, this type of tumor is very closely related to neuroblastoma, which those two pieces of knowledge are likely burning a hole in the lining of my gut.

I've discovered not just through dealing with Ella's health issues, but also observing dear friends who have children with health issues, that nothing, NOTHING makes you crazier than a sick kid.  Be it a super high fever, an autoimmune disease, cancer, or a broken bone, nothing makes us lose our s*%# more than feeling helpless against their illness.

I'm still an anxious mess.  I know that the best thing for me to do is to find that piece of scripture that I can chew on and swallow and let fill that burning hole in my stomach, so if you have some, share it with me, I need it….. and maybe a bottle of wine.

Moving on, that's what we will be doing…….

We are moving in February!  What?!  After 9 years here in Norfolk/Virginia Beach, the Navy is actually moving us to the one other location in the United States that Jon can do his job.  He made Department Head and is going back to flying the C-2 next year at VRC-30 in San Diego!   We are excited for the adventure.  He is excited to not deploy to super scary places like his last deployment, and excited to go back to flying actual airplanes.  He really enjoyed his last/current job with NSW.  It was an amazing experience for all of us.

Also, this past July we had to say good-bye to our most amazing dog child Rudder.   Our hearts are still so sad and our home just isn't the same.  In a moment of sadness, (also read as weakness) Jon and I decided to get another portuguese water dog puppy.  The puppy will be born this month and join our family in November.  Since making this commitment I have remembered what puppyhood is like and it's too late for me to retract my vote as all the people in our house are giddy with excitement.  I'm trying to get excited, but spending Labor Day at my sister's house with their adorable PWD puppy was a bit "real".  I realized there that I'll have two puppies soon as Freddie is in full on puppy stage as well.

That's all for now.  I'm going to go grab my Bible and see if I can find some tums.