March 23, 2006 at 11:20 PM EST

March 23, 2006 at 11:20 PM EST
Today and yesterday were very emotional days for me. Simon has been projectile vomitting since Sunday and has not been able to keep even his oral meds down. Yesterday after a few days of bacteria growing back in his cultures they decided he needed to have his PICC line removed and that set up for a scrambling day. Due to the fact that Simon is on so much medication they really need 2 different lines to put all the meds through and one good line to do blood draws. Since they did not have that with the line gone they had to call in the vascular team to try and get two new ivs in him. After holding him and trying to comfort him with words, songs and hugs, after 4 attempts of poking him they were finally able to put in one iv line. Simons eyes seemed to keep looking at me asking "why mom, do something". It broke my already broken heart again. I did all I could to hold it together and after the team left, I balled my eyes out, crawled into simons crib, put my arm around him and sobbed. He finally fell asleep. The night was no better as he was very restless and kept shaking the crib from moving his head from side to side and swinging his arm back and forth. I had to call in the resident at 2:30 am because I was so worried. We slept about 2 hours and I finally got up and held him. After throwing up twice in the morning the drs. decided I should not feed him. He also was exhibiting some swelling or pressure on the top of his head with a "bump" if you will that they still are not sure what it is from and they are watching it. I asked if they should be doing a CAT scan. It has been a scary week. TOmorrow he will have to go under and get another GI scope to see if they can find the cause of the vomitting and he will get in a new PICC line. We hope that will help to resume a more normal medication schedule and some rest for us all. I am home tonight so I hope to sleep some after being awake for 4 days practically. We'll see how that goes.

The ANCs came back today and they did go up slightly. 48% Marrianas cells Go Marriana!!! I don't know what any of this means since Simon was given a reduced chemo and they did not wipe out all his cells, we are not sure how long its suppose to take or if there comes a time when we know it did or didn't work. We keep praying Marrianas cells continue to go up and Simon continues to be strong and come out of this healthy and home with his loving family. Marriana said at the dinner table yesterday that when she can't sleep she lays in bed thinking about Simmy and she wants him to get better and be home. Isabel added that she wants him home so she can play with him. We all want him home. Please continue to pray for Simons health. God Bless Everyone. Tracy and David