It's 9:30pm and I am sitting in a "play room" on the pediatric floor of Sloan Kettering using their computer typing in examine gloves (who knows what kind of snotty fingers have been all over this thing). Anyways, my computer will be here tomorrow and then I won't have to worry about that!
Rory had a full day! We got to the hospital at 9:30 this morning and Rory had some blood work done right away and then was given the awful 2 liters of GoLytely which he was to consume it all by 2 this afternoon. Well this is a horrific task not only because of the volume (2 LITERS!) but also because of the horrible oil taste (so I'm told) this GoLytely stuff has. Rory tried to drink it but could not tolerate it and resorted getting the feeding tube put in his nose. The whole time I kept thinking to myself...this would be a good would you rather question...would you rather drink 2 liters of GoLytely OR get a feeding tube stuck up your nose and down your throat! Anyways, once they got the tube in Rory was fine and said he wished he would have started with the tube from the get go! Now we wait and the idea is to have Rory cleared completely out!
Rory is also in the process right now of receiving two bags of blood. His hemoglobin was a little low and so they are helping that out right now. He has been napping most of the afternoon/evening. Tomorrow they will come and get him about 7am to start prepping him for surgery with the incision taking place probably around 9. They will not give us a time frame of how long the surgery will take - just telling us they will stay in there until they have done a good job. That's comforting.
Other happenings today - I met Jessica and Xander who I have been communicating with through emails and facebook. Xander is an 11 yr old boy who also has DSRCT and was the first to receive 8H9. Jessica has been very helpful in giving us heads up on what to expect and to give us insight into things we would have otherwise not thought of! Xander has successfully had his tumors removed and went thought the 8H9 protocol and they are headed home tomorrow! It was sooooooooooo good to see Xander today and see a testament to this new 8H9. I believe this may be God's answer to all our prayers through modern medicine and I'm very excited about it! We also met another DSRCT patient here named Patrick. He was diagnosed 5 years ago at the age of 20. He is now 25 and looks GREAT! It was so comforting to talk to him and he was so wonderful and kind! It is so nice to have others here going through the exact same thing (DSRCT) because they can reassure you and they know EXACTLY what you are going through! As all of you pray for Rory, please pray for both of these guys and all of the other patients with DSRCT!
Well tomorrow is a BIG day. My stomach is literally in my throat and my heart seems to be jumping out of my chest. Yet at the same time, I have this sense of calm and I know that God is totally in control. He pulled Rory and I together so we could battle this together and he put us here at Sloan Kettering. We are at His mercy and His grace and we are just apart of His plan - something I am more than willing to be apart of! We want to be living testaments to His way, His truth, and His life! I logged on to the Intentional prayer for Rory page and looked and the spreadsheet and immediately started crying. When it started on Tuesday it had only three columns and a few names on it and today there are more columns and more names and EVERYONE in our lives is behind us, supporting us, and going to God in prayer on behalf of us in this scary and exciting time! I can see how God is using this situation to pull everyone around us closer to Him and I stand in awe!
From the bottom of my heart and I know from Rory's heart and his families heart as well... THANK YOU! You have no idea how much the prayers mean to all of us and continue to give us strength!
I better get back to the room and see how Rory is doing! I LOVE ALL OF YOU!
"He said, "If you listen carefully to the voice of the Lord your God and do what is right in his eyes, if you pay attention to this commands and keep all his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord, who heals you." - Exodus 15:26