Latest MRI

Hi Everyone!  Sorry for the length of time between postings (again).  I know several are wondering about the latest MRI.  It was stable!  Of course, this isn't what we were wanting and hoping/praying for but we will take it!  Now it could just be scar tissue (which is what we are so praying for!) but because of the likelihood of it being dormant cancer we are going to go forward with some form of chemo.  The fact it was stable is great but AT/RT is literally the most aggressive brain tumor out there and it can be dormant for years and start up with  avengence so we don't want to take our chances.  Both of us feel comfortable with our decision, however what type is still the question we are trying to get to.

We both strongly want to keep away from the High Dose chemo for the same reasons as back in March.  This time we have been able to do more due diligence with actual facts in hand regarding Elan.  Erik chatted with several doctors the past few days for second and third opinions at several world renowned hospitals (with AT/RT we get an doctor to talk to us - one benefit!) and the best part is Seattle Children's offered to present Elan to their brain board next Wednesday!    How cool is that?  They have 4 pediatric neuro oncologists on staff and have seen AT/RT plenty so we really feel good about the team discussing Elan.  How kind of them to offer too!  Erik talked with one of them over an hour and she had several good ideas they may discuss.  Brain boards basically brainstorm the toughest cases to come up with creative ideas.  We will see what they come up with.

Whatever will come out of the conversation we don't know but just feel really a 4th through 7th opinion is a good idea.  They are totally on board with our parameters as well as our issue with quality of life for Elan long term.  There is the idea of lowering the chemo dosage as well as spreading it out further to keep his blood counts up as well as help with toxicity.  The question is will the dosage really work?  We are already on the "Elan protocol" so maybe this will be another chapter of it.

Everyone is doing great here.  We put Finn into gymnastics and swimming one day a week each.  Elan came down with a cold a few days ago - the first time he has gotten something since Feb really but already doing well.  He still is just walking with one hand all the time and just doesn't have the confidence to let go.  The leaves help with us stomping them like dinosaurs for PT.

Fun times in our new wagon!

Elan helping me put it together

Party at my parents!

dr appt - Panda getting an exam too.

Meeting night - Elan stays home so he can go to bed on time.  Eik appt this night!

Finn getting a haircut - special treat in the police car!

Balloon Fest from a 2 weeks ago - a ton of fun!

boys eating breakfast and playing with clay.

Finn's "creative" superhero outfit

Sporting their NEW Backpacks from Seth and Jenny!!!!  It only took me 2 months to post the pictures - sorry guys!  as you can see a HUGE hit!

being sporty

I just had to add all the photos - they were so cute!

garbage helpers

Special breakfast for Finn (egg in the middle - didn't really work but by adding the other stuff he ate it.)

Cleaning the rug my grandparents gave us... filled with Big Lots cleaner from about 50 years

we ended up cutting a small hole and shaking it out....

This is only 1/2 of it... I put finn in for scale.  We were able to get all of it out and it no longer smells!  It looks fantastic in our living room too... pulls everything together.  I will post later a final photo of it (laundry everywhere right now!)

Notice the big pieces of hotdogs (organic, grassfed of course!)