Day THREE of chemo

Well we are on day three of Simons nine day chemo regime. So far he has been ok. We are told we won't really see any side affects until 5-15 days. Its a little scary. We have had a busy day with Simons picc line (where he receives his meds and blood draws) came loose and started coming out so that had to be reinserted and stitched today and then they came to have him see a kidney doctor because his blood pressure has been really high and he had to have an ultrasound on the kidneys today. We hope nothing is wrong there.

Everyday is something new. Something for the unknown and always worrisome. Marriana is still not feeling well with a really bad cough and night time fever. We keep hoping she gets better. She will be coming into the hospital friday for a little line to have the cell stimulating shots put into so she doesn't have to get poked 4 days in a row. So hoping that goes ok and that she breezes through that part of it. A week from today she will be admitted and the cells extracted. Its so close and scary.

Simon's skin still continues to be an issue for him. Its at the end of a cycle right now which has left it very pink, they say its new skin coming in and we pray its the last time the cycle will do its circle and that he will be free of that pain very soon. There are no guarantees and the doctors still think its graft vs host. Simon is the youngest diagnosed with NEMO and the youngest to be transplanted. He is part of the research now going on at the NIH (National Institute of Health)in Washington and his blood slides and skin biopsy have been sent there for further evaluation. Its all so crazy.

We are praying everyday that things start to turn around and go good for Simon so that he will be relieved of the pain and suffering he has had in his short life. Friday he will be 6 months old and we just want to get him home and start the countdown to day 100 when his immune system will be safer, during that time we will have to be very cautious and keep every germ out of our house and away from him. Its going to be a long road.

Keep us in your prayers. Thank you all Tracy and David