New Path...

Looks like we are headed to Philly... After gathering the needed information and talking to CHOP (Children's Hospital of Philadelphia) we have decided to go and see what they have to offer Grier in terms of treatment.  I have read a lot about a few trials they have and I am very interested in hearing what the doctor thinks in terms of Grier's case. The good news is we have an appointment for Wednesday, May 4th.  The bad news is that is NEXT week and once again the airline and travel part of this journey is OUTRAGEOUS. I just thought NYC flights were expensive! But I am not worried about it now... I need to hear what they have to say and hopefully there is something out there besides the same old chemo. One trial that I am hopeful Grier will benefit from is MIBG therapy.  I have added a link to explain it.... http://www.research.chop.edu/programs/maris/docs/mibg4.pdf

Grier does not know yet that we are going to Philly.... but we are going to have Jeff with us this time so it should help since we are going to a new hospital.  We have not had his company in a VERY long time so it will be nice to have another adult with me. Our appointment is just going to be one day and then we will come home and see what they think. Since it will be one night we are staying at a hotel that the hospital suggested... There is a Ronald there but I will be honest I did not want to worry about a room and all that entails for one night.  The best news I heard about the  Philly RMDH is that we do not have to bring sheets or  launder them before we leave and the room cleaning is not so rigorous. That has been wearing me out lately since I have been traveling solo to NYC for the last several months.  I have read a few care pages and  I am "excited" about this new opportunity~ as excited as you can be about this crappy card we have been dealt yet again.   We will still be going to MSK and CLT just adding a new piece of mail to our mailbox from CHOP... LOL!

I have been thinking about the "cure" that is so far out of reach... and I am leaning more towards finding a treatment for this 'chronic condition' with a good quality of life.  NB relapse does not have a cure but I do believe that we can treat it for a very long time and hopefully that is the direction we are headed.  

Watch out Phillies... you are getting ready to have a new FAN named Grier!!! Here we come CHOP!