Wed, Apr 27, 2011 7:40 PM
The first part of this week has gone so smoothly I have almost forgotten about the last month of chemotherapy, a 9 day hospital stay, and a trip to NYC for scans... It is amazing how well Grier adjusts back into his routine that has been interrupted since he was 3-- he really surprised me by going to school the last three days and staying all day. He not only stayed all day but has played all afternoon as soon as he has gotten off the bus. He has told me a few things that were said about his "bald head" but he does not seem to let it bother him.... Some would say because he is a boy and it would be different if he was a girl...but bald is bald.. It is hard to lose your hair once but he is on his 4th time! I have tried to get him to wear a hat and he doesn't want to... I wish I was that brave!

After a few days of emailing.. We are a little closer to our next step. We need to start a low dose regimen of chemotherapy similar to the one he had last month but at a much lower dose. After chemotherapy we will need to harvest some of his stem cells for our just in case scenario.. Hopefully this harvesting can be done in Charlotte.. All of this depends on when our appointment at CHOP ( childrens hospital of philadelphia) is scheduled... Scans have been sent to them as well as Grier's clinical history... And insurance said OK! We are just trying to get a second opinion ... Who knows if there is anything that we will be able to do but it is time to find out.
I am anxious to hear what they say ... The biggest question I have been asked is " Do the doctors not recommend a plan ?" well, there is not a roadmap that we are following now.. We haven't followed a "plan" for awhile because there is no set plan for relapsed NB... and we are relapse x3 so it is an individual plan for Grier! NOT ideal... And since I not an MD I feel very lost at times... But by no means are we done trying to find the right treatment for him... He continues to show us how to LIVE life to the fullest with NB so we will Continue to fight the fight so he can be Grier!