Wow how is it already the end of October!?!  It has already been a month since Vivian had her first infusion and I honestly was waiting to update in hopes I would have more exciting news than I do.  That is in terms of CRMO, I was hoping we would be in a better spot by now.  She had her first infusion on September 18th and she handled it like a champ!  She was a bit tired after but otherwise did not show any major symptoms that we were warned about.  I was thrilled that she was ready for a play date as soon as she walked through the door!  She had quite the appetite while on the prednisone and I was just happy to see her eating!  I mean who cared if she polished off a personal pizza and was still asking for more when all we knew it could come to a halt once the meds kicked in.  But it didn't and she rolled through the infusion like it was nothing.  Until week 2 that is.  After all the prednisone was out of her system and she was back to life as a normal 8 year old the pain started creeping back and unfortunately started to increase.  Before the infusion she was on average a 6-7 on a scale of 10, now she was sitting at an 8-9 on a daily basis.  Needless to say we have been feeling a bit defeated and helpless.    I have read that for some kids on this treatment it takes a couple sessions before they feel true relief.  So as we head into her second infusion my hope is that she will start feeling that relief sooner than later. 

Thank you all for the wonderful cards and get well wishes, they really have cheered her up and we so appreciate the support and love during this!  She recently told me that she is going to ask Santa for her back to stop hurting, my fingers are crossed that she will get that present!