It should be obvious, by my absence, that there is a lot going on in our home.  One day, the blog will be updated and pristine and clear and all that fun stuff.  For now, we are schooling, dealing with personal issues, learning English and how to communicate with words not actions, and trying to maintain a house.  Add in a dose of neurofibromatosis and all it’s jazz and sprinkle with a side of renovation bug that seems to have been caught by yours truly.

Yep.  Busy.

Anyway, this week has been a roller coaster of emotions week.  Emmie had an MRI on Tuesday.  We spoke with her neurologist then.  And then she had x-rays on Friday (today) and we met with her neurosurgeon.

Ready for the Roller Coaster Run Down?

Great News:  Plexiform neurofibromas in her neck are stable!!!  There is no signs of any issues in her windpipe or spinal cord.

I decided this past summer that Emmie’s tumors needed a name.  If they were going to hang out with us for awhile, just saying tumors or plexiform neurofibromas can get old.  We asked Emmie what she wanted to name them and clear as day she said, “UGGHH!”  And it stuck.

We ask her what her tumors’ name is and she says, “UGGHH!” We all laugh at her resolve and determination.

I thought I would start out lighthearted with this post since I haven’t posted in a while (sorry, enjoying my new addition while schooling and helping organize a walk etc).

I recently realized we haven’t shared an actual picture of UGGHH.  Our focus has been so much on Emmie’s spine.  UGGHH is stable but it is also very large.  Her next MRI is scheduled for December and we’ll see then if it is behaving itself still.

It’s hard.  Oh so hard.  To look at these pictures and know that this thing is growing inside our spirited, silly, opinionated and loving daughter.  To know that it has wrapped itself around so many nerves that there is never any way to surgically get it out.

But, I felt it needs to be shared.  I think that sometimes seeing is believing and can lead to a better understanding.

So, without further adieu meet UGGHH

These scans were taken in June of this year.  MRI scans are revered so this is actually her right side.  The top right picture is a cross section (just one…the tumor is through several sections) of her neck.  If you can look closely, you’ll see how it wraps around from front to back.  When she was nine months old, it was actually in front of the spine and pushing the windpipe to the side.  That was the part that was removed.  The removed part was about 1 cm large and made up about 20% of the tumor.  Since that time, it’s also grown down into her shoulder which you can see a little bit of.

UGGHH is the reason we fight, talk, raise awareness, and walk.  UGGHH is the reason we’re organizing a local walk and fundraising for Children’s Tumor Foundation.  Right now, there are a couple of clinical trials we are watching ever so closely.  These trials are bringing hope to those of us who are waiting and watching.  And these trials are funded in large part by Children’s Tumor Foundation.  Not only are these trials and research helping us in the NF Community, they are also benefitting children and adults all over who suffer from various other diseases and disorders.  It’s a ripple effect of hope.

Will you help us?  Will you join the fight against UGGHH?  Sign up to walk or give to Team Super Ems today.  Every little bit makes a huge difference.

Two years.

Two years ago we were enjoying this beautiful little face.  She had come out screaming and yelling and didn’t stop for two nights straight.  Mark and I knew our streak of quiet-sleep-through-the-night newborns had ended.  We couldn’t have cared less though, we had our Emmie Mae.  Our beautiful third little girl.

Our lives, like so many others who have walked the diagnosis road, were rocked to the core when we learned the word.  Our diagnosis…Neurofibromatosis.  We knew Emmie was making her very own unique mark in the world like all of our other kids.  But, this word was a constant reminder.

We spent that first year educating ourselves. That first year was a flurry of doctors visits, tests, and a surgery.  That first year was a year of learning to advocate and lead in providing the best possible care for our daughter.  We now know every road that leads to a Children’s Healthcare in Atlanta.  We now know we have some of the best doctors in the country right near us.  We now know how to speak up.  We now know how to stand up.  We now know how to educate others. Then the second year came.  And joy entered in.  We rejoiced in the value of living in the moment.  Trusting God with the future.  We rejoiced in loving fast and holding tight to each precious memory we made.  To each toddler firsts she accomplished.  We had joy as we lived with a diagnosis, changed a diape, broke up squabbles and just lived.  

Neurofibromatosis.  It’s become a part of our life.  A part of our ministry.  A part of our story.  A part of His glory.  We hope to continue to raise awareness and to share our story as we continue on this NF journey.

On World Neurofibromatosis Awareness Day this year, I want to share a few facts:

• NF is a genetic disorder which actually includes three different disorders:  Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Schwannomatosis.
• All three disorders can cause tumors to grow on nerves.
• One in 3,000 births gives us a sweet baby born with NF.  That is more than cystic fibrosis, muscular dystrophy and Huntington disease combined.  NF is the least known, most common, rare disease.
• NF can cause blindness, deafness, physical deformities, amputations, and learning disabilities…that’s just a few things.

For more information or to donate to research to end NF, go to Children’s Tumor Foundation.