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.