Sunday, May 25th, 2008

Nathen is doing much better now. We've had a long journey and we've been through a lot in the past several months. Nathen has gone through nine rounds of chemo and has had approximately 6 surgeries and numerous bone marrow aspirations. Nathen had his surgery on May 8 to correct his stomach problem. Originally the doctor had told us that he was going to have to cut Nathen's stomach all the way across the bottom and then stitch it back together the opposite direction to correct the emptying problem that he has been having. However when Dr. L. Q. as we like to call him went in for Nathen's surgery found that he did not need to cut Nathen's stomach across the bottom. He found that the muscle around where Nathen's stomach empties into the intestine was open but very thick has been spasming. So instead of doing the original surgery he decided to just sliced the muscle that was around the bottom of the stomach to relax it to keep you from spasming more. While he and Dr. L. Q. was in there he also found the Nathan's appendix was up underneath his right kidney and so he decided to go ahead and remove that as well. He said that if Nathen had gotten appendicitis in the future we would never know and due to the fact that it was hidden underneath his kidney. Nathan recovered very quickly from his surgery this time he was up that very evening watching cartoons. A couple of days later Nathan and I were getting ready to go to bed it was maybe around midnight and I can notice that Nathan sure was soaking wet on the right side. I was thinking that it was due to maybe his diaper leaking or is something else but one I took his shirt off I noticed that he had TPN running from underneath his dressing and it was white with the lipids and it. I immediately clamped it off and called the nurse. When the nurse came in we decided to take the dressing off and look and see if we could figure out where it was coming from. This whole right side of his chest and his shoulder was swollen and he had TPN leaking from all the holes of his chest, it is coming from a hole where the Central line is and then also coming from the holes where the Central line is stitched to his chest. The nurse was wanting to clean him up and put another dressing on his central line and access his mediport on the other side of his chest to run his TPN through. I told her no we weren't not going to put dressing on his Central line again. So we put some gauze and we wrapped it up with a gauze role to protect it from getting any germs in it. The nurse and access his port on the other side to run his TPN through. Two hours later when she came in to do his labs every time she would pull back on the syringe he would scream. I woke up and went to see what he was screaming about and she couldn't get any blood from his port. I notice that his left shoulder looked kind of swollen and puffy so I cut off the bandage role to look and see what was going on. I was so shocked when I seen that his left side was completely swollen and his neck and his chest all the way down his side. Come to find out the nurse had missed his port is that the needle right above his port so the TPN had been pumping into his chest cavity on his left side as well. Needless to say all Mothers Day I was a nervous wreck Nathen had TPN and both of his chest cavities all the way down his side and the surgeons had to come in and stick needles and his chest to try to get some of the excess TPN out to try to prevent from having any soft tissue damage. Nathan started having episodes of tremors like his whole body would shake and we couldn't figure out why and he kept running low-grade fevers off and on over a period of four or five days straight but nothing would grow in his blood cultures. Finally we have gotten the tremors under control, fevers have stopped and we been able to start giving Nathen Pedialyte during his feeding tube. We got him up to 35 mills of Pedialyte and decided to do half Pedialyte and half formula to try to get Nathen calories in nutrition through his tummy instead of TPN. We were checking for residuals every six hours and were getting almost everything that we put in back out. He went from 11 o'clock at night until 930 in the morning without anybody coming in to check his residuals and Nathen got really sick. Whenever I woke up at 930 he and I were both covered with poop. It went from his shoulders all the way down to his ankles and we were both soaking wet. For the next two or three days after that Nathen was getting sick to his stomach constantly. He would heave and just so sick to his tummy for almost 4 days straight. None of the medicines that they were giving him would help relieve nausea. Finally they decided to go ahead and send us home with all his nausea medicines for home and the day we came home he was a totally different baby you felt so much better he was in getting sick easily been getting sick maybe a couple times a day. He plays with his toys he laughs he gets mad he acts like a normal two year old now. The best news is this adds a few days after his surgery we started having all of his tests done to check where he is when it comes to his disease now. A few days later the doctors came in and they told us that it looked better. Well since we've been here every time we've had test than the doctors would tell as it looks better so naturally we just assumed that he still has some work to do and that maybe we had to get some more chemo and the cancer was still there. A couple of days later I decided to ask the doctor when you say "better" but do you mean. Do you mean that it's almost gone, and do you mean that it's minimized a little bit more, Word do you mean that it's about the same and not any worse? The doctor told us know what I said better I mean it's gone he is in remission he is cancer free capital NED, no evidence of disease. He said the MIBG scan came back negative. All of her prayers have been answered this is what we've been waiting for. It has been a long 10 months. God has been walking beside of us through this and has been guiding us every step. I just want everyone to know how grateful we have been to have each and every one of you saying prayers for us and being there for us through everything. The doctors have told me that now that Nathen is in remission he has a 65% chance of beating this disease. Now we have to do everything in our power humanly possible to keep him in remission to keep the body invader from coming back. I have been told that they only dudes scans and check for the disease to come back every three months. I know that between those three months Ganson three-month checks I am going to be a nervous wreck every single little thing that happens that is different in any way at all I'm going to be scared that it is a sign that Nathen's Neuroblastoma is back. I know that everything is in God's hands and I know that he is going to walk beside us through this whether Nathen relapses or does not. I cannot begin to tell you how happy Chris, myself, and the rest of our family are that we have made it this far and Nathen is cancer free. Please everyone continue to pray that Nathen continues to stayed cancer free and beats this disease once and for all. Our next step of treatment is going to be the 3F8's. I'm not exactly sure how many cycles of the antibody we are going to need at least not until I have spoken to the doctors. I do know that Nicole and Zachary,Nathen's older brother and sister will be here sometime next week and we plan to do a lot of sightseeing here in New York now that Nathen is able to be out and about and enjoyed being a toddler. During Nathen's surgery I asked the doctors to put a medi port in as well as a replace his Broviac so that when we get a little further out from treatment he will be able to take baths and swim and have a great time. After we have our first round of the antibody treatment we will be harvesting stem cells again. Then we can take the Central line out and all Nathen will have is his medi port in and when he is not accessed here will not have to have any dressings over top of it and he will be able to get wet and get dirty and have fun. Once again thank you to everyone who's been here for us we really do appreciate it. We'll love you all, Amanda