Monday - "Doctor Day"

Mondays are our official "doctor days" even though we can stop any of them at any time to talk.  Well Erik and I hadn't seen the MRI from May 16th and Erik really wanted to see it.  I was hesitant since I knew it had "noticeable growth".  Well we finally sat down with Doctor Douglas and it is basically the size it was when we resected.  This isn't good news at all.  Of course this is all before treatment (and Dr. Guo's tea :)) but our baseline for starting is much tougher.  The doctor didn't say it wasn't curable but does make it that much harder... So basically from a 10 to 15% to more like a 5% even though he didn't say that.  If anything it is giving us more time!  Just a lot to wrap our heads around.  So frustrating that we didn't get him started earlier but then we wouldn't be doing the cranial spinal which is giving him the absolute best shot.  We just need to remember that we prayed for everything to be black and white and to get the right care at the right time.  We need to just remember it is in his hands and we are at the absolute best place possible for him!

Dr. Douglas was so kind and loving about it.  I started crying and he just hugged me.  Really reassuring and saying we are doing everything we can and that this isn't the only shot.  He then gave us a few other options we have if this doesn't stop it completely so not to give up hope of complete recovery.

The other bummer is that Elan caught a cold... this is the first time he has been sick since the hospital.  I am certain it is because we stopped the vitamins after talking with Dr. Guo.  SO we are starting them up again!  SO one more level to the food prep but totally worth it! 


On a much happier note - my grandparents arrived today!  So nice to have them - they are so easy for a few days and a great distraction.  We took them out to a pub for fish and chips which we always enjoy doing with them.  We also did our traditional wine and hor devours before we went out.  So nice to be able to have our kids know my grandparents and learn of their quirky ways :).  If you notice in the photos we had a great time.   Grandmother always does her best to make things "classy"... if you look closely you will just see how cheap and desperate we all are (hint look under the wine bottle and flowers).

We then stopped at the Chocolate Moose so they could have that experience too with the kids.  I think in all we consumed 3000 calories in 4 hours.  Fun!

Here are some pictures to recap:

Finn entertaining everyone before fish and chips.

One other good thing... Sunday I went to Once Upon a CHild to see if there was a train table or something similar.  Elan has one at home and really cruises around it etc.  He has stopped doing it so much here - well I found one and guess what???  5 hrs of cruising today!  Great to have outside as well.  Pretty cool as has a lid for doing blocks but then take it off and has all sorts of tracks - makes him get on his tippy toes.  Great find all for less than one Physical Therapy Copay!

We brought a few train tracks and our Thomas trains but the center had killer things we could borrow - hello Cranky!  You will see him featured for the rest of our visit - Elan's ab fab!  So cute - he goes - CRANKY (well we understand it) and then smiles and laughs!

biking today!  Boy are the toys from the Proton Center awesome!  One of the nurses has a 5 and 7 yr old both of which have new bikes so she gave us the one Finn has for the time we are here - so lovely!  Thanks Jennifer!  

he is sooo proud!