Sunday Nov 25, 2007

Sunday Nov 25, 2007

Once again I know it has been a long time since my last post. Since my last post, Nathen has gone through alot of things so let me see if I can recall everything here and post it in the order that things happened.
Nathens 5th round of Chemo was due on October the 26th but we postponed it due to his counts not being high enough.
Then on October the 29th Nathen had another bone marrow test done to see if his marrow was clean to harvest stem cells for his transplant.
On October 30th we were told that the first test showed his marrow was clean and they wanted to do another extensive test to make sure before they planned the surgery to put the central line in to harvest the stem cells.
On the 31st they told us that the more extensive test showed he still had 5% on the left side but the right side seemed clean.The docs went ahead and planned to harvest anyways and sent the cells to California to a lab that can try to get some clean cells out of the stem cells they harvested. That day Nathen got to dress up in his costume, a girraffe, and we went down to the halloween party they were having, unfortunately Nathen wanted nothing to do with the festivities that were going on. I will get some photos of his costume posted in the photo gallery real soon along with some recent pictures that I have taken over the past couple weeks. You can view a lot of the images here, on my space webpage: http://www.myspace.com/mandypootoyou.
On Thursday November 1st we got to come home.. YAY.... It was great to come home. We were scheduled to come back on Monday morning to do the surgery for central line which they planned on putting in his groin area since he is too small to put it in higher up. Shortly after the surgery (possibly that afternoon) we would begin harvesting the cells and it may have to take a few days then we would start his chemo as soon as we got enough stem cells.
Thursday afternoon The docs called me at home and told me they decided to not harvest yet and to wait til after the next round of chemo to make sure his marrow was clean and we would not do a surgery and harvesting for nothing. If the Cells they got out did not have enough clean cells they could not use them and it would have been a waste to put him through all of that since we would have to take the central line out and then do another surgery to put another one in at a later date to harvest again.
All weekend long it was great to be home. Nathen was feeling great and was up running all over the house dragging his IV pole around the house and beating up sissy and bubba. We went to the mall a couple of times and he rode the carosuel several times in a row. He loved it and the lady told us he can ride as many times as he wanted. At home he would play and run around as if we had never left home at all. This was great for me to see since for the past few months it has been so much bad stuff.The whole family had so much fun with Nathen over the weekend, it was a great break awayfrom the hospital for all of us.
On Tuesday November 6th we came back to thehospital and started his 5th round of Chemo which was 5 days long.On Saturday, his last day of chemo we were supposed to come home again but Nathen once again started throwing up and had severe diarhea again and they could not let us go home since he would get dehydrated without the IV fluids to replenishhim. After a we stopped his feeds on November 15th to give his gut a rest and let him recover from the chemo, throwing up and diarhea with out aggravating the situation more. He then started running fevers the next day and ran them for about 2 days then they stopped. so then we started the feeding tube back up with pedialyte, slowly increasing the rate. When we got to 25ml per hr the docs decided to try to add some formula with calories and sloly increase the concentration instead of the total amount going in. So he has been at 25ml/hr and slowly increasing the amount of formula and decreasing the amount of pedialyte in the mixture. When we got to the 75% formula 25% pedialyte mixture Nathen started throwing up more frequently again. SOOOO... I told the docs that I will not increase the concentration yet and that I thought he may need to sit at this concentraion for a couple of days before we increase anymore. I jsut do not want to mess up the progress we have made this time and have to start all the way back over. Nathen is at 23.5lbs which is more than he has ever weighed in his little life. Well and that is where things are right now. Sometime this coming week we will more than likely be having another bone marrow test and also an MIBG test and some other scans to see where we stand with the cancer. If all goes well we will be planning toharvest and also start looking into his surgery to remove the tumor.
We still have a long way to go to raise the money we need for his surgery but every penny helps.THANK YOU to everyone is helping us in our journey through this trying battle. Nathen is a strong little guy and I am greatful for everyone whois helping make it possible for Nathen to show us just how strong he is.
I do want to make a special THANK YOU to TRACY AND JOHN WHITAKER for their support and dontaion towards Nathens trip to New York. They have been so strong and unbeleivably supportive since I met them even though they themselves have been going through a battle themselves. They lost their son recently in his battle and they were so giving and so caring in spite of what they were going through. In my daughter Nicoles words " Mommy she is so brave" even my daughter only being nine can see how tough things are for them and see how caring and supportive they have been.
I also want to THANK in advance, everyone who is contributing to the benefit that my mom and brothers are putting together in Tampa to raise money for Nathen's surgery. I am very greatful for everything everyone is doing.
I also want tomention a couple of great people who I have not had the honor to meet, Heather and Kasey... Both of these great people had some of Nathens favorite blankets which are discontinued, and VERY HARD TO FIND, and they sent them to Nathen, to make sure Nathen has a few blankets to swap out so he always has a clean blanket at the hospital. You are both so giving, thank you very much I know he is very thankful. He would be a nervous wreck if he had to go to bed without hisblankie.
Well for now I think that is all I can think of and I will try to postmore often, its just very difficult for me to get a chance to sit down and take a few minutes for myself since Nathen always wants me next to him and when he rest I try to either rest or get caught up on making formula or other things that have to be done. Please pray for clean bone marrow and for tumor shrinkage and these are both very important to his recovery. If anyone needs to get in contact with me you can email me at amanda.camp@yahoo.com . It seems that the room we are in does not get any reception on my cell phone so email is the best way to get a hold of me right now and I will try to get back to you as soon as I can.
Thanks everyone.... Amanda...