Tues March 18, 2008

Well we are back in the hospital, we got to go home for a few days after we finished our 8th round of chemo,but we were back at the urgent care almost everyday we were out with something or another, less than24 hours home I noticed that Nathen felt very cool tome and he had woke up with a cold sweat. I took his temp and it was 95.7 which is very low for him since his normal range is from the high 98's to the low99's. I took him in to the urgent care(basicly the emergency room for here) and they said they didnt knowwhy he was like that all cold and clammy that is.After about an hour of being here they decided toadmit him and thne he felt sick so I asked them togive him something for nausea and they gave himativan. Well within like 20 minutes his temp came backup to normal and he was feeling fine again. The next morning I was talking with the doctors and we came tothe conclusion that Nathen was going through with draws for the ativan which is a narcotic. GREAT, I was thinking just something else for my poor baby to dealwith. We got to come home that day and the docs sent us home with a low dose of the ativan to put through his feeding tube. The day that Chris got into town wehad to go for an appointment and we were still therewhen he arrived, Nathen had to get blood. then we came home and Nathen got to spend some good snuggling time with Daddy the next day. Then On Wed. the 12th we hadto take Nathen in for an appointment to get his blood counts checked. All evening the night before he wasvery fussy and miserable feeling then that morning hefelt warm so I took his temp and it was 99.7 so I waslike OH BOY here we go... by time we got to theappointment his temp had spiked so they decided toadmit us and start some antibiotics. We have been hereevery since. Nathen has been sleeping alot just tryingto recover. I myself have been very depressed. Thishas been a long road for me and now I am without myother two completely. At least in Oklahoma I got tosee them a few times a week when grandma and grandpa could bring them to the hospital to see us. Now I amlike a gazillion miles away and I miss them SOOOOmuch. I wish there was a way to have them here. Easteris around the corner and I have not ever been away from them for an Easter. My mom and I were joking around that she was going to put our name in for theextreme makeover home edition for them to build us ahouse here in New York so we can all be together again and deal with this as a family, a team. I was going to have them here with me for spring break but we are still in the hospital and their spring break starts this coming Friday. I am sure Nathen would love to have Sissy and Bubba here too.. They always seem to cheer him up and he gets so excited when he gets to play with them. I feel like maybe he would be more active if he had them here to play with. I found out today that Nathen's bone marrow test results were... the bone part of it(the biopsy) was clean but the aspirate part(the liquid center) still has neuroblastoma cells in it. The Docs are very anxious for Nathen's counts to recover so they can do some more scans and do another bone marrow test to see if this last round has done anything to the remaining cancer in his body. We still continue to battle the nausea spells, which we now know it is another stomache issue causing it, we found out that where his stomache empties into the intestine is either blocked or has narrowed and now the content of the stomache just drips into the intestine instead of flowing. Dr. LaQuaglia has said that when Nathen fully recovers from this round of chemo we will do another surgery to fix it and hopefully his stomache issues will be fixed. I know inthe next few days we will be harvesting his stem cells to save for a later time in case we need them and we also have another upper GI test to see if his tummy draining still looks the same so we can make plans for his surgery. I sure hope we get out of here for atleast maybe the weekend before we start more stuff to keep us contained here in the hospital. Good News is his counts are starting to recover so maybe we willget a couple of days break before we have to have surgery and more chemo. Please keep praying for ourlittle man, he is such a trooper... he is so amazing, every day he shows me more and more strength! It tells me he is going to make it.. he is tougher than this cancer. Amanda

Wed February 27, 2008

I am sorry it has been so long since my last update.We have had alot of things going on here in thehospital. On Friday the 22nd we got out of he ICU unitat New York Presbitbiterian and came over to MemorialSloan Kettering to the Pediatric Observation Unit. Wecontinued doing chest therapy to help get some of thefluid off of Nathens lung. Monday morning they tookanother Xray and told us that his lung looked a wholelot better but he still had fluid behind his heart. Wegot to move over to the general floor and have beenhere every since. The rooms are shared rooms with twopatients but we got lucky and have great room mates.Dad left on Saturday so its just Nathen and I again.Its made it very hard to leave and get things that weneed. I have to wait til he is in a deep sleep andhope he stays asleep while I run to where I need to goand get back. We have had some new issues come up aswell. We were supposed to start our next round ofchemo on Tuesday but I asked the doctors to hold offbecause we are having issues with the vomiting again.Nathen had a fundo(fundoplication) done there for heis not able to actually throw up anything, he justheaves and tries to get stuff up. I have asked if wecan do some test to try to figure out why he isvomiting or at least trying to, before we add anythingnew to the mix. The docs here agreed and we are goingto do some test today and hopefully get some answers.His chemo should hopefully start Monday which will behis eigth round. The docs want to wait til thebegining of the week so the five days of chemo willend at the end of the week and not in the middle. Weare now experiencing diarhea as well and may have tochange rooms until tehy can find out if it iscontagious. please keep praying and I will try to keepeveryone informed as much as possible. Amanda