Happy May!!

Well, I think we have it all figured out now. We are scheduled to start the transplant process for reals this Friday. We have a break tomorrow, then there is no turning back. On Friday we'll head down to Children's in the morning to be there 9:00 am. They'll probably get us settled in, and then Kelby starts her first day of chemotherapy. She gets three new kinds of drugs through this process. They'll be hooked up to her for a few hours each day for the next six days. She is also going to have to take other medicines to protect her from infections. Next Thursday she won't be getting anything. On Friday she'll get her stem cells back. They tell us that the substance the stem cells are preserved in will really stink...like old garlic...and Kelby will smell like that for a little while after she gets them. Oh well...those cells will be saving her life, so we'll deal. They gave us all their expectations on what this will be like. I guess that if I tell you how hard this is going to be...you all will be able to rejoice with us when it goes better than they expect for Kelby. We think that Kelby is a super girl, so we hope it isn't as bad as they think it will be. First of all, Kelby will stop wanting to eat again. As soon as she loses her appetite, they will start her on the IV nutrition. They think that she won't want to eat for maybe months after the transplant, so we'll have to give her IV nutrition at home for a long time. She will probably get bad mucusitis in her mouth, throat, and stomach which will also affect her eating. This is painful sores and thick mucus in her mouth. We will have to swab her mouth with a saline solution to help her feel better and she may get pain medication for that if she is miserable. This can get so bad it could block her airway and put her in the ICU. She may feel nauseous and throw up while she is getting the chemo and maybe for some time after. Her blood counts will all go down. She'll probably need many red blood and platelet transfusions. Her white blood cell counts will go down to zero for longer this time. She may get a high fever during this time for which they will give her all kinds of antibiotics. She could get infections from bacteria, viruses, fungus, or yeast. They also worry about pnemonia. They say that even once her white blood cell counts come up, she'll still have an immature immune system for quite a while, so we'll have to be careful with her for a long while. We will wait for her counts to start going up on there own before she'll be released from the hospital. Her ANC will have to be above 500. They think that will happen about a one month from this Friday. We hope to be transferred back to the Group Health system at that point. After a couple weeks of rest, we will have to start her radiation therapy. That will be every weekday for a couple weeks. They will have to give her anestesia everyday for that to keep her perfectly still. We will probably be getting that done at the University of Washington Hospital (UW). That will knock her system down again. Radiaton doesn't have as many acute side effects as the rest of her treatment has, but will have long-term effects on her, especially with bone growth. Once the radiation treatment is done, we will probably be able to go live at home again (I hope). We will have to be careful with germ exposure for some time, but at least we'll be in our home! So, this is going to be a very difficult and trying time. We hope and pray that Kelby does better than they expect. I think that so far she has really shown them. She is 100% right now, so that is a great place to start from. She will have her own room, so that will be nice. She won't be allowed to have fresh flowers or latex balloons in her room. The flowers can have germs and bacteria I guess...and latex balloons are a chocking hazard...but Mylar balloons are welcome. She loves them! We can take down some of her toys and some decorations for her room to make it homey. I am still hanging on to this baby. At my last appointment, I was dilated to 1.5-2 cm. So, who knows what is going to happen. Baby could come at any time now. Hopefully later than sooner. Keep up the praying everyone. Thanks so much.