MGH

So yesterday we received news from Jessica Bell, our oncologist that MGH most likely won't take Elan unless he did protocol.  We knew this would be the most likely answer... main reason is that they are doing a clinical trial and with Dana Farber (part of MGH) and Elan would fit the profile if he did do the high dose.  Dr. Yock at MGH did talk with Jessica yesterday and we are yet to find out how that final conversation went.  Poor Jessica had a head cold and lost her voice so may have taken yesterday off as she said she may.  Another Dr. may have done the final conversation but we still have to wait for his MRI on Tues to know the final final from MGH.

We are OK with it as still could go to other places and they are more eager anyway.  For some reason we both had a feeling MGH wouldn't work out but feel that Indiana will... not that it means anything but the feeling we get from the conversations with drs ect.

Yesterday was also a rollercoster for his eye.  We went to the Optimologist for his scratch who had given me cruddy news last Friday at the follow-up that something more serious was going on.  Last week I took Finn too since it was the only appointment that i thought would be low stress - of course it was about as stressful as the first ER visit!  Poor Finn saw me crying etc.  I wasn't able to ask any questions since he was there so for a week super stressed.

 So needless to say Erik came too.  We get there - see him then take Elan to do a photo (awful - guy doing it hadn't done anyone under 3 before).  Then the Retina specialist comes in and says "oh, no big deal, just like a freckle and not cancer related".  So for a week walking around having been told most likely cancer related and had spread to his eyes and then the other guy comes in and in 5 seconds says no big deal and just hereditarily normal.  Thanks!

Erik talked with our pediatrician last night - Dr. Lye - the best btw.  He called us Friday at 6 pm to give us his recommendations for Finn for counseling.  So Erik told him briefly what happened and said "yeah the med school joke is if bad bedside manner go into Optimology".  Really sad how the doctor knowingly put us through it.  Dr. Lye said he had the same thing - of course he would!  he was also born on Sept. 7th :).