Good news first.  The spot on Baby Leo's groin is NOT cancer!!!!!  It was not a hot spot on the MIBG.  The radiologist believes it may have been his right testacle.  (YEAH!) 
There is no evidence of disease progression and the activity on his liver has remained stable compared to the two previous MIBG's.  This is all fantastic news and exactly what we were praying for.  Every time his scans come back stable, I feel so blessed and thankful.  I have seen the good, the bad, and the ugly and feel so fortunate that Baby Leo is doing so well.   

I have to ask for some advice on a topic.  I have had concerns for quite some time now about Baby Leo's liver.  The impression from his latest CT really scared me quite a bit with the remarks about fibrosis and showing signs of cirrhosis.  When we first took Baby Leo to see Dr. Cohn in Chicago something she said to us has always stayed with me.  She told us that her main concern wasn't the Neuroblastoma, it was what the Neuroblastoma would do to his liver.  I have brought this up to his oncologists on a couple of occasions and I always hear the "that shouldn't be a problem" solution.  Finding information on a case similiar to Baby Leo's has been impossible.  I haven't had any luck gathering information.   

Leo and I talked today about taking him to a Pediatric Gastoenteroligist.  (sp?)  Does anyone have any advice on a similiar situation.  We don't want to jump the gun, but we also feel lucky that we have an advantage in knowing that disease is there and want to be proactive before it gets out of control.  I don't know!  Does this make any sense?   

Well, 6 days to go before we take off for 10 weeks.  I can not wait.  I normally stress over packing, but I find myself abnormally relaxed.  I hope I feel the same way on friday and saturday.   

My amazing husband along with one of the most inspiring women I have ever met have been working on a great event in honor of Baby Leo ALL benefiting The Children's Neuroblastoma Cancer Foundation. Pat Tallungan has been working incredibly hard to make sure that this event raises much needed awareness for Neuroblastoma and raises funds that wil help further advancement in research that will save lives.   

I have made this update a lot longer than anticipated, so let me stop here, but please find out more about the CNCF and the event that Pat has planned by visiting www.grandslamgala.org.  The CNCF has been a tremendous support for Leo and I along with hundreds of other families that are faced with this nasty disease.  Pat has seen first hand what Neuroblastoma does to our children and she has committed herself to finding a cure for this disease.    

Thank you, Thank you, Thank you for checking on Baby Leo and keeping him in your prayers.  Please continue to pray for all the fighters out there.  I wish everyone a great week.  

Keep The Faith,
Lori