Long Days, Short Nights
So what is it like to sit in the the same room all day all night? If you ask me it's boring, it's like watching grass grow.
In reality we are watching cells grow, and we are doing just that. The last 3 days we have seen some really positive growth. Thursday was a really impressive day ANC 42, Whole cells 76. That for whole cells was a record, went from 20 to 76 GO JACK! Friday, it gets even better ANC 114 Whole Cells 78 YAHOO JACK. Saturday ANC 160 Whole Cells 50. 3 great days with 3 sets of great numbers. Yesterday Jack had a P.I.C.C. (periphrel intravenous central catheter) line placed to replace his broviac that was taken out on Monday. It is in his right arm this time. It was a long day waiting for Interventional Radiology. First it was supposed to be 2 -2:30, then 3-3:30, finally happened around 4:30 - 5:00. That was even being on the schedule. Jack as usual took a truck load of sedation to get him to go to sleep and even woke up during the procedure. After it was all done you would have never known that he was just sedated. He is a wild man. We made some progress with eating today, he ate a few spoonfuls of sliced peaches. It doesn't sound like much but it is a big step.
Dr. Brown was in today and Jack was being Mr. Charming. He turns it on and off. Anyway she said we are set to do a boost on Thursday the 11th. Since Jack is at 95% donor cells they will totally deplete the "T" cells and just give him the stem cells. They are anticipating having more then enough so they are going to freeze a bunch for future use if necessary. But they won't be needed. Gotta think positive. This all so scientific. Dr. brown left the room saying "keep everything quiet tonight" I said "I'll try." Yeah right! At about 11:00 pm Denny (the diaper head nurse) says he doesn't like Jack's blood pressure it's to low and his fever is a little elevated. So I'm thinking here we go again. He monitors Jack for the next 45 min. and it doesn't go up. So he calls Dr. Hwang in and she calls Dr. Brown and so the story goes yada,yada,yada I'm up until 3:00 am. Jack decides he is going to wake up at 7:30 and start the day. I wanted to die. This was 2 weekends in a row that Jack was not himself. Dr. Bunin toild me on Friday if Jack got sick over the weekend it would be my fault and I wouldn't be able to stay anymore.
So, I apologize for the delays in posting information. I promise all of you that we will be more diligent in posting.
Thanks for the response on the blog notification email. There's still time to get on the list if you haven't emailed me yet (like it's going to expire). Just say "I want to be on the list". Thanks for the prayers, crossing and knocking.
God Bless you all.

Hi guys. Wow it sounds like Jack is doing some amazing progression with the cells. That is good to hear. We know all too well how hard it is to sit in that room week after week and we pray you are all home very soon and on the road to having only good NEMO (since it is something we all have our boys just have "bad" NEMO). We are thinking of you all the time and praying for Jack to be recovered and home real soon. Our Prayers are with all of you. Stay strong. Tracy & Dave Gutierrez (Simons mom and dad)