I was unable to post yesterday because it was so hectic. Ben was scheduled for surgery Friday Morning to have a permanent IV port put in so that it would be easier for him to recieve fluids, transfusions & Chemo Therapy. He was also scheduled to have a Spinal tap and his first Chemo Therapy treatment injected directly into his Spinal column. This is to kill any Cancer cells that may be in his spine. He was also supposed to have another Chemo therapy medicine put into his IV port later Friday afternooon. During surgery his platelets were so low that they could only due the port IV they decided not to do the spinal tap and Chemo injection because they were worried that he would bleed into his spinal column.
Friday night my Mom was taking a shift so that Matt and I could go sleep in the hotel room. She took over at about 8:30pm, at this time ben's blood pressure was high and so Mom and the nurse promised to call if anything changed for the worse. Matt and I went to the hotel and spent the first time alone together privately that we have had since Monday. We prayed to together for Ben we asked God that he would heal our son and not take him from us. We both also told God that we know he is sovreign and that we want his will in this. We fell asleep around 10:30 and Mom called at 1:00am and said get down here as soon as you can. When we arrived they let us know that his blood oxygen levels dropped to 60(they are supposed to be above 90) and his blood pressure was very high. They moved him to the PICU(pediatric intensive care unit) they assured us this was precautionary and that they are able to monitor him better there. They took an Xray and discovered that he had fluid on his lungs they told us this was because of all the fluids he had been recieving. They also took swabs from his nose to test for virus' and infections. They put him on antibiotics just in case he does have these. We will not have results of the swabs for three days (monday). Ben and I fell asleep at about 4:30am Sat. morning and I woke up at about 7:00am. Ben was still asleep and they did another xray to see if the fluids in his lungs had gone down since they gave him medicine to make him pee it out. They also redrew his blood to test for any abnormalities. Matt and I left to go home and get some paperwork for the hospital and then we went to the hotel at about 2:00pm to get some sleep. During this time Benjamin had his spinal tap and his injection of Chemo in his spine. He woke up well from this procedure and had his other Chemo put in his IV port. We woke at about 7:30 because Aunt Jill and Uncle Kelly brought us some food. The Lord is good and that food made both of us feel so much better. We called my Dad and asked if my sister could stay the night so we could rest up. This morning (sunday) my Dad called and let us know that Ben was being moved back up to the 2nd floor. We have been with him at the hospital since about 9:30am. He is not feeling well(likely from the Chemo) so he is very quiet. He will not speak to me or look at me. At first I was saddened and thought maybe he felt betrayed that we slept away from him but a father of another child on our floor told me that this is normal from just having a chemo treatment. So I am asking God for the grace not to take it personally. I did cry at one point and he finally spoke to me and said "mama come here you need hugs & kisses" so see God answered my prayer. That is all Ben has chosen to say but it is enough for me. :)

Once again I need to tell all of you reading this that I am daily encouraged by just the sheer numbers of prayers and all the support we have recieved. Even through the good news we have a long road so please continue to pray for us. I can tell you that God is ever changing the course of Ben's road through your prayers.

Jamie