Grier and I will leave on Sunday for a week long trip to Philadelphia.... we got his scan schedule and it all seems too real right now. Every hospital does things differently so this will be a whole week of changes.... starting with his Bone Marrow tests on Monday morning. They only do 2 sites... and they do it with general anesthesia... TWO HUGE changes for Grier... The docs said he could choose front or back...RIGHT...... I think I will choose... ugh! Tuesday he will have a CT scan and his MIBG injection and on Wednesday he will have his MIBG scan... we will go over results.. and if there are no surprises.. we will sign consents and he will get the first dose of the "millennium" trial-- we will be able to go home on Friday evening. We are going to try to stay at the Ronald McDonald House but we will not know until Sunday after 10a if they have a room for us... They said they help find a hotel if not... the only issue is that it is graduation season and there are lots of schools in the city... might make it a little tricky. We have a request in for corporate angels... and I can only wait so much longer... gambling with airline flights is not my strength. I wish they would just let me hold some seats for a few days... :)
Next week is NOT ideal in our life schedule... but NB has not waited for "ideal" in the last four years so I am hoping the absence during EOG ( END OF GRADE TESTING) week will not make a huge difference. Honestly my two older kids should be used to this crazy life and it might not make one difference... possibly even make them do better. I will miss some things I had on my calendar too... but again nothing new~ it will all be worth it if this drug works.
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