Simmys Smile

This Photo (posted on our carepage still to come on the web page) of Simon says it all for today. We got our counts back today earlier than expected and I have to say when Daves mom told me Simmys doctor had called when I went out to run an errand my stomach dropped so I immediately call stem cell and spoke to Kim. I was pleasantly surprised to hear that simons counts had come up overall to 94% this week and that his b cells and myloids were up to 97% donor while his lagging behind, pain in the butt t cells were strong at 91%. This is good news and we are happy to know that thus far the raise in cyclosporine seems to be helping to regain the donor cells. His igg level was also steady in the low 700s so we are not going to be giving him ivig yet. As you know this is a drug he needs to help keep his immune system fighting infections that it cannot fight but we also think either that or another iv drug he gets monthly, pentamadine, is contributing to the awful skin rash he has last month. Right now the plan is to hold all meds strong even though the cyclosporine is not at a therapeutic level but is aiding in getting our Marriana cells back, and we will most likely be switching to a daily liquid drug (which is not the best solution for us as we add another med to the mix) to replace the iv infusion of pentamadine.

Overall things are going well. Simon has been vomitting once daily and I"m not sure what that is due to, if its the meds being increased or what but hopefully it will pass again. We want to thank you all so much for sticking by us and praying for our son, our family. Please continue to ask for Gods hand in helping to completely heal our sons new donor immune system and to lead us to a more normal life. I did take the kids to the park yesterday and Simon was loving being in the midst of "life" and enjoying all the things to climb up on. I was running behind him with wipes ever step of the way but thats what moms do. Have a good night. God Bless, Tracy and David