Well- Since it is JULY 1st--- I thought I better update!! Summer is flying by!! We had a great time at the beach last week--- I think I could have stayed a few more weeks-- you can not beat waking up to seeing and hearing the ocean! I still can not believe how different this year was-- Grier only had to take Accutane 2 times a day (he was very proud to show everyone how he can swallow a pill too!!) Last year, he was IV antibiotics every 8 hours-- IV nutrition... and other meds--- a port that we wrapped every time we went outside--- ETC. !!! Sunscreen (aka "scum scream")-- was the main issue this year-- and we made it without being burned!! And the only medical emergency was for Jeff!! Yes-- we had a 911 call and they came quickly and checked him out--- he is fine now and seemed to have a quick virus??? Who knows-- ! Never a dull moment!

Before we left for the beach-- we were busy with swimming and baseball--- I was making arrangements for our next trip to NY-- and a referral was made for Grier's Make -A- Wish trip! Exciting huh? Hayes and Grace are trying to talk him into Atlantis-- and he is set on Disney-- We do not have a date yet-- and it all will depend on the treatment plan that we follow next-- AND when we can take more time off from working!!

We will head to NY next week for scans-- this time they have added a MRI of the brain-- I was a little thrown off by this at first but after a few questions I feel better-- NB Relapse happens often in the head/brain and they have started doing this MRI every 6 months so they can kept closer tabs on the area--all the other scans will continue to be every 3 months-
So-- He will have an MRI and CT scan on the Wednesday-- then on Thursday will have his MIBG injection and on Friday-- it will be the MIBG scan with bone marrows- I hope we will go on Tuesday-- but I am not sure yet! I hope to be back Saturday morning-- the worst part is we will miss the All-Star tournament that Hayes is playing in!!

We went and had the HAMA test done yesterday at the Charlotte Clinic-- and the blood is on its way to NY-- I am not sure exactly how much it matters --BECAUSE we found out that since he has gotten four rounds of 3F8 -- this may be it for the current protocol he is on! I know some of you are confused but there are a lot of different 3F8 protocols-- we started NED ( no evidence of disease)... it was he first remission ... and he tested HAMA positive before round 4-- So, hopefully our scans will be good... NED! And the team will meet to see what to do next- He still has one more cycle of accutane to complete too- Not only do we have the anxiety of scans next week but also waiting to see what is next!

I am sure I have forgotten lots of important information!--- There are some people I would like to thank-- Kim R.-- for the gift and the anonymous gift that was given to us by Ted ( Jeremy's Dad)! Please tell them thanks from all of us!

There are still lots of magnets left--- Anyone have any ideas how to get rid of them???! And a few T-shirts!

That is it for now--- I will update when I find out our plans for next week!