update day 6

Hard to believe it has already been six days of being here in the hospital.  Scotty is doing well.  He has his bouts with nausea and feeling unwell.  We have figured out if we stay away from the narcotic drugs for pain we do better.  He has no pain, that has subsided.  Today will be his last day of chemotherapy and will have a couple days off of it before he needs a few more IV bags.  Scotts Doctor came by last night to check on us and see how he is doing.  He feels he is doing well, he does not need any blood transfusions yet.   He knows that in the near future he will but as for now we are doing ok.His body is tolerating the chemotherapy well and doesn't have too many side effects. Our goal is to possible be discharged next Tuesday.  They will be monitoring his labwork heavily to see how stable he is.  Scott and I are in no hurry to get him home.  He wants to stay here as long as he needs and doesn't want to go home then turn back around and come right back.  Next Tuesday (day 8 of chemo) he will get another round, then days 11 through 14 he will need more.  We are praying and hoping that we have the strength to fight this and knock it into remission.    We should know if the chemotherapy has worked in about three weeks.  It will be  a long three weeks, the truth is just around the corner.  Scott misses his kids so much and is hoping to be able to sneak them over to the hospital this weekend.  I know they miss him so much.  It has been so helpful to be able to skype them in the evening and see their happy faces.  They want to know when Daddy is able to come home.  We keep explaining that it will be soon.  Carson wants Daddy home so he has someone to watch him build train tracks and play catch with him.  Madi wants Daddy home just to be there.  I think she also wants Daddy home so Mommy will be home.  This has been difficult on her and the whole family, but her being the oldest she is starting to feel the effects and strain that this has had on our family.  Scott is willing to do anything for his family and that is why we are here.  I am doing allright.  I have my moments where I am upset and sad, but try not to let it hold onto me too long.  I know that I need to deal with my emotions and try not to be negative.  It is so HARD.  My brain is always racing and thinking about all of this.  I am trying to wrap my mind around the whole idea of being on chemotherapy for at least 2 years and fighting for his life for that long.  We will not back down and give up, no matter what.  So what is next.... they will take out his line in his neck this evening and put in a picc line in his arm.  We are still waiting on the cytogenetics (chromosome workup labs) to determine if Scott has the Philadelphia Chromosome or not.  If he does there is a new drug that will help him to get to remission, but will definately need a bone marrow transplant.  If he is negative for the philadelphia chromosome (PH -) then there isn't a magic pill to help him, but wont have such a high chance of needing a bone marrow transplant.  We need everyone's help and support in this battle.  We need people to show Scott how much they love him by sending cards and wishes through email.  We need kids drawing pictures and sending them to us so we can brighten Scott's day.  We are so blessed and thankful for a good support system.  Without that I am not sure we could do this.  I will try to update as much as possible.  Until then thank you for caring about us and thinking about us.