We're Back

Hi everyone. We made it home and are trying to get back in the swing of things. The final meeting was a bit hard for Dave and I to hear since they told us that doing the BMT will fix simons immune system (providing it works) but not other areas it may affect on NEMO boys. This means possibly his organs like liver, kidney and brain. They said don't set yourself up for failure. We were like what? We are trying not to think about those things and focusing on the present and what needs to be done. We need to get his immune system fixed once and for all. Marriana is going to have to go through harvesting again and we are going to see if we can freeze the stem cells in case we need them later so she won't have to go through it again. Please pray the donor lymphocyte infusion does the trick. WE are nervous and praying and praying this will be our saving grace. WE ask for continued prayers. I also invite you all to go to simons web page cure4simon.org to read about the other boys dealing with NEMO. No mutations are the same and some have not been caught as early as ours. They all carry different infections, and consequences to those things. Its so sad. Dave and I are going to register on the Bone Marrow list in case anyone needs stem cells b/c we think if you can help and save someones life, it is important to do so. Please consider this as a way to help as well. We are so happy to be home, and believe it or not, I missed my kitchen tremendously. I could not prepare food for simon or sterilize his things on this trip and it was hard. We also were told to put in reverse osomosis system to our water at the house. Anyone know a good plumber? I'm told this is not cheap. The girls are happy to be home and we will get right back into the preschool days next week. For now, tomorrow we decorate the house for Halloween, the girls are very excited to do this. Take care all of you and enjoy your loved ones at home, every moment. Love Tracy and David