UPDATE ABOUT THE BENEFIT FOR NATHEN

I just wanted to give everyone a little run down on the benefit. I do hope some of you can make it. We have worked really hard to make it a great day for everyone. I have attached the 2 flyers (kids and benefit) also so that you can sort of get an idea what is happening.

Food

Live Bands - you can check out our webpage for the groups and the times they play - http://nathentrueblood.com/benefit2008.html

Cash Bar (monies from alcoholic beverages does not go to Nathen)

Bucs Game

Arm Wrestling - this is gonna be fun

Pie Throwing - this is gonna be funny!

Raffles - and do we have raffles this year. Some of the items are a Bucs Coach Gruden Superbowl Hat autographed with a certificate, Tampa Bay Rays Watch, Family 1 year pass to Mosi, 1 year free membership to Beach Park Health Club, Really nice framed prints, and a lot more items and more coming. You do not have to be present to win and if you would like to buy tickets please call me. We will post something soon that will show all items being raffled. And just to let everyone know, we are very honest in our raffles and Nathen's family is not allowed to participate in any raffles.

Rummage Sale - People have called and we have picked up stuff and some are bringing their items the day of the event. If you have something, or want to clear out stuff, call me, I will pick up, we have a storage room (813) 900-3319

Baked Goodies - We are asking anyone who would like to, please bring in a baked item for this sale.

Face Painting by C H I Q U I T I T A ’ s, she is well known for her work around tampa in body and face painting.

Jumbo the Clown - If you have not heard about Jumbo yet, everyone is in for a treat, a true entertainer!

Hair Cuts by various hair cutters from So. Tampa - all proceeds are going to Nathen $10 hair cut.

Pedicures & Painted Nails by Margo

Kids Games, Bouncer, Slide, Coloring, Prizes, 2 cartoon charactes & More!

Tupperware Display - I decided to do this for Amanda. I have heard over and over how small the Ronald McDonald House rooms are, and she tries to stay organized there. I thought we could do a tupperware party the day of the benefit and whatever the hostess earns Amanda can pick out some stuff from the catalog for her and Nathen while they are trying to be comfortable in NY. I have catalogs and am taking orders. If you would like to order something from Tupperware and have it benefit Amanda and Nathen, you can contact Denise Fyda and here you can see some of the great things they have right now: Denise Fyda WEBSITE: http://my2.tupperware.com/DeniseFyda

EMAIL: DeniseFyda@my2.tupperware.com

Last but certainly not the least (to some anyway) if we reach $10,000, I will get on stage and have my head shaved bald again!! It is just starting to grow too. But it's ok, it will grow back!

There will be professional photography being taken all day also in which we will get to share when it's all over, I can't wait!

There may be other things happening that day as we are working on more stuff. Please pass the word around, invite your friends, family and everyone. Come out and have fun and at the same time help Amanda and Nathen. And if you can't make it, maybe you can print the flyer up and hang it somewhere that others may see it!

Thanks everyone, please keep praying. I have to tell you that when I have been going out and getting raffle items, it has been hard for me to tell people about Nathen without me breaking down and crying. I have to stop myself and remember that God is going to use Nathen as an example of the miracles that he performs and Nathen will be the proof. Thank you for your continued support.

Carolyn

(813) 900-3319

Sunday, November 9th

OK, so I know it has been a very long time since I have sent out an update, not sure if I can even remeber where I left off but here goes nothing... through the end of August and most of September Nathen had been running low grade fevers with no explanation and real fussy(like he did before he was diagnosed) I kept telling the Dr's there was something wrong but they would keep saying look at him, he looks great, and yes he does look great compared to a year ago but still there was something not right and I knew it. Finally in the end of September he had his scans and they were not going to do the MRI of his head because they had alot of emergency ones that needed to be done, but I insisted they do one even if it had to be a week later or something. GOOD THING I DID! When they got the results, they pulled me in the room and told me he had two tumors in his brain and they were hemoraging. On Sept 30th we had surgery to remove the two tumors which was a great success, they got all of both of them. The Dr's said we can not do any more 3f8's at this time but would have to have two rounds of chemo and 17 days of radiation before they would do more test to see where things stand. The Surgeon decided that he wanted another MRI post Surgery to make sure things were as they were supposed to be. So on 10/13/08 we started a round of chemo, and on Tuesday the 14th we started radiation and also had the MRI. It took them a week to tell me the results of the MRI, I kept asking and they kept saying the results were not back then finally on the 21st exactly a week later they told me that they have the results and there was another spot on his brain but they do not know if it is a tumor or if it is bleeding but it is larger than the other two they removed and they will not look again til after he finishes radiation, so we have a sceduled MRI for November 13th, needless to say I am a nervous wreck waiting and I watch every little thing Nathen does to make sure that he does not show any neurological symptons. So far he is hanging in there. They also said that because they do not know what is going on we will have to keep his platelets above 100 thousand so we have been getting platelets almost every day. On November the 3rd I was called by The radiation Dr's office and told that they needed me to come in and that the Dr needed to talk to me about something, I was feeling very sick to my stomache and all I could think of is that spot, and they seen something during radiation or something. When I got Dr. Wolden met me in the hall way and took me to a room and I immediately asked, whats wrong, is Nathen OK? And she said yes he is ok, he is fine. She said I have to tell you though that on October 29th, the previous Thursday they made a mistake and radiated the wrong part of Nathen's brain. She says that it is a low enough dose that it should not have any extra side effects than the radiation that he is getting in the correct place. I AM DEVASTATED! This is my baby's brain we are talking about. It was't just a little error either, it was off by a whole section of the brain. Due to this error Nathen had to have an extra day of radiation to give the needed dose to the correct spot. Which also meant an extra day of anestesia. I tell you what my baby can't catch a break. He has had enough problems with out people messing up on his treatments. I told her I want the person responsible to held accountable! I know mistkes happen but when it is someones brain they should be extra careful. Anyways thats where we are now and we will be going to the hospital every day next week to check his platelet levels til we get his next MRI results, and then we will go from there. Please say a prayer for my little man, also I would like to say that while you are praying for our little man please pray for 4 families that have loss this horrible battle and have gotten bad news this past week. Brody Hurt gained his angel wings on this past Monday, his sister was very good friends With Nicole while they were here. On This past Sunday Faith Giffin gained her wings, and this past Thursday Kody Edwards gained his wings. All three of these kids we got to know quite well and it hurts me to know their families have to endure such pain but I am happy that they no longer feel pain them selfs. I know they are in gods loving arms in heaven and he is embracing them and also embracing their families. On this past Friday another family we have met here got some terrible news. They were told that they could no longer receive chemo and that the tumor in their sons brain has spread too much and it is growing too fast, it is now covering his whole head and going down the spine. Please say a special prayer for the Larson Family and their son. God can do wonderful things and I know he is with them and he is by their side and by ours. Thank you to everyone for your continued support and prayers,

Amanda and family

P R A Y E R S 4 N A T H E N B E N E F I T 2 0 0 8

Check it Out! A new benefit for Nathen. All the information is on his website but it is being held Novemeber 23rd at the American Legion Post 138 in Tampa Florida. Bigger and better this year. Alot of great raffle items, arm wrestling, live bands, open bar, clown, cartoon characters, games, prizes, Tampa Bay Buccaneers Game on big screen TV, large rummage sale, food and fun for the entire family. www.nathentrueblood.com/benefit2008.html for more details.

Nathen is currently finishing up the 17 days of radiation he was doing and we are all praying that the problem they found is not a big problem. Amanda will be giving us an update soon.

Check back soon for the update and I hope to meet you at the Benefit!

Nathen's Surgery was a success!

Nathen's surgery was a success! we have pictures posted on his website at http://nathentrueblood.com/surgery9-30-08.html

Amanda said that she was surprised that Nathen was eating so well last night after the surgery. They didn't sleep well though but it was because of all the noise and stuff around them but that overall Nathen is doing really well. God bless everyone.

Nathen is having another surgery 9/30/08

Nathen was in remission, and if you read Amanda's last update you can see where they found neuroblastoma in his bone marrow again, so they took it back about him being in remission but at the time did not say if the neuroblastoma was from previous or a new growth. Well now they have found two tumors in Nathen's brain and are having a specialist remove them on tuesday 9/30/08. There is more info for now off of Nathen's site www.nathentrueblood.com. Keep in your prayers and thank you everyone for your support!

Sat July 26th, 2008

IMPORTANT NEWS!!!!!!I know it has been a very long time since I have sent an update but there has been alot of things going on lately with Nathens emotions and his overall well being. Here it is after 1am and I am just now getting a chance to send this update. Nathe has not been going to sleep til after midnight almost every night and even then I am up most the night cleaning his pants and the bed several times due to his diarhea. Not to mention he has had 2 rounds of 3f8's and it flat out drains me physically and emotionally to watch him go through that. This past round Nathen stopped breathing the first day and became limber as a rag in my arms and the Nurses and Doctors grabbed him out of my arms and put him on the bed with Oxygen and the "BAG", the thing they use to do CPR with. They had to give him NARCAN... basicly to reverse all medications in his body. I was such a horrible mess and did not sleep hardly at all the whole week in fear of the next days treatment. Now that we have finished that round of 3F8's we started another kind of medicine which is supposed to help keep them from Relapsing. It is called Accutane and it is used in high doses to keep the cancer from coming back. The doctor mentioned that the medicine has been known to make the older kids very suicidal and very depressed, moody. I was thinking GREAT. so now Nathen had a round of 3f8's, ended on Friday, then that following Monday he started Radiation which was 7 days long twice a day, once in the morning and once in the afternoon(meaning Nathen could not eat or drink after midnight until about 4pm in the afternoon every day) then that ended on Wednesday and on Thursday he had a surgery to fix his mediport(where he gets his meds through) which we found out during radiation that the tub that goes from the port and into the heart is supposed to only be in the middle of the heart bu Nathens was at the very bottom laying against the heart wall so everytime they would draw blood for his blood work it would stick to his heart wall from the suction, that surgery was on a Thursday and then on the following Monday he started 3f8's again, then as soon as he finished that he had to start the accutane and also had another bone marrow done. The Accutane has made him cry non stop for hours at a time, and very moody, he wont let anyone do anything for him but me and most of the time he wont even let me do anything.he is just flat out MISERABLE. did I mention all his hair fell out again from the radiation? It ok though it will grow back again. Since Nathen's last round of 3f8's he has lost 9lbs which is alot for his tiny little body. I cry every time I change him, it kills me to see him so thin again. They also started him on an appetite stimulant the same day he started the accutane and he eats 24/7 now, NO LIE 24/7. he wakes up and first thing he says is bite, and he wakes up in the middle of the night crying to eat. But because of the diarhea he is still losing and not gaining. I am so worried about him. he went from 36.25lbs to 27lbs. I am hoping that the diarhea(no clue what is causing it since he has so may digestive issues and also had surgery and radiation to the tummy)will stop very soon and Nathen will be my plump happy little man again. HERE IS THE VERY IMPORTANT PART!!!!!!!!!! Today was Friday July 25th, just 5 days over a year that we found out that Nathen had cancer, and they told us today that his last bone marrow biopsy they did last Thursday was POSITIVE for Neuroblastoma. PLEASE PRAY, we wont know more til at least Wenesday of Next week, which is when they will be able to do more test. I am so scared and have been crying all day and it took me back to when I first heard the words NATHEN HAS CANCER a year ago. Please please pray for my baby and pray that maybe this is just cells that were still left and not regrowth since if it is regrowth it will be worse off than if it is just cells that were still lingering in his bone marrow. If it is regrowth it most likely comes back much stronger and harder to get rid of than the oringional disease since it will now have built up immunity to the chemos. The test next week will be to check for Tumors and also to check to see if it is other places than just in the bone marrow. Please pray for my baby and pray for our family to be strong through this tough time. THANK YOU....

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

Thursday, May 8th, 2008

Around 1:45pm the Nurse Liasson came out and told us that Nathen is doing good and that they had done all four of his bone marrow biopsies and had taken out his old Broviack line ( his IV line in his chest) and placed the new one in. They had to replace this due to the fact that on Monday night when we were changing his dressing and replacing the caps on the end of it at home the end of it had cracked. We immediately cleaned it with alcohol and wrapped it up in sterile material to keep him from getting any bacteria into his blood stream. They also placed in a new infusiport ( the port under the skin and is accessed from outside the body with a special needle) so that when Nathen is a little further out from his chemo treatments he can have the needle out and not have things hanging from him and be a normal toddler for a change. At that time they will take out the new central line( a bedside procedure from what we were told) and then just have the port so he can get medicines when he needs them but not have a line hanging 24/7. This means he will be able to take baths, swim, play outside and do all the normal things that onry two year old boys do. They were just starting the main part of the surgery when she had come out and talked to us. They will cut his stomache across the bottom and then squeeze it back together the opposite direction and stitch it back together. From what I understand the bodies natural pull to go back into shape will pull the opening at teh bottom of his stomache open to allow food and bile to pass through. Hopefully this will fix his tummy and he will be able to eat and not be so nauseated all the time. We will be glad to get him off of the IV nutrition as it has caused him more problems than good. Please keep praying... I will update everyone as soon as I hear from the Dr.'s
Amanda

Nathen is out of surgery. He is doing good, as good as can be expected right out of surgery. He is breathing on his own and is sleeping comfortably. Dr. LaQuaglia had to remove Nathen's appendix due to it being displaced, it was moved up under his liver. He said it was better to remove it since it being under the liver could have hidden appendicitis if he ever got that in the future. He also did not cut his tummy the way he origionally planned. He looked at things and decided that just cutting that muscle around it to relax the muscle was a better plan. He said it seemed like the muscle was spasming and it would be better to just cut the muscle around it instead of slicing across the whole bottom of the stomache. we will let you know more as we know more. As of now he is doing great and on his way to recovering.
Thank you for your continued prayers,
Amanda

Thurs., May 1st, 2008

May 1, 2008

Over the past few weeks we have had alot going on. Nathen had his 9th round of chemo and due to them not having an empty room on the in patient side we had to go in every day and stay all day long in the clinic even on Saturday and Sunday. WHAT A PAIN THAT WAS! Every ay they would tell us to come in and they would have a room for us, so every day I would pack up the stroller full of stuff for us to stay at the hospital and lug it all up to the hospital and sit til 4pm when they would tell us oh we dont have a room yet.(GREAT) We were home for about a week after the last round of chemo when the fevers started again and we had to be admitted for the fever neutropenia. When we got there we found out that his blood sugar levels were on the low side. No problem they said easy fix, we will jsut give him some dextrose and bring it up. Well they did so and it did come up. After about 2 or 3 days inpatient his morning lab results showed that his sugar levels were around 250 and that was real high so they were going to reduce the dextrose that was in his TPN for that night.Well Nathen had slept all morning and afternoon, which is normal for him when his counts are down and he feels real cruddy. About 1:30pm I said OK enough sleep. and tried to wake him up, I nudged him and kissed on him and he did not budge after messing with him for about 5 minutes his eyes opened but were in a daze and could not focus his eyes on anything. I would pick up his hand and let go and it would just drop like he wasnt awake. It was like he was in a coma. The Nurse came in and I told her about what was going on and that he had been covered in a cold clammy sweat about 20 minutes before all this happened and she tried to wake him as well and we could not get him to come to. She ran and got the glucose meter and we checked his sugar and it was 29. I was so scared, I have never seen any of my babies look like that. The doctors said he went into a hypoglycemic attack. His sugar was so low that he probably had a seizure. Finally after they gave him some dextrose he came too and was extremely thirsty and drank a whole cup of apple juice, completely not normal or him, and then he seen a chicken breast on the table and asked for it. I gave it to him and he took like 8 or 9 bites out of it. He would not even wait for me to cut it up for him. He looked like a barbarrian with that big hunk of meat taking bites out of it. It was like his body was telling him I NEED SUGAR. Finally after a few days we got his sugar levels all straightend out and he is now on TPN 24 hours instead of 12, basicly to keep the sugar levels stable. After about 2 weeks in the hospital his counts came up and we got to come home. Since we have been home we have got to go to the Yankees opening night(the last one in the old stadium), We also were able to go to a Lacrosse game at Madison Square Gardens.Tuesday we tried to go Bowling with the Ronald Mcdonald house but we got there and were there for about 10 minutes and we had to wait for them to set up for us so we went over by the video games with Nathen.Right off the bat he spotted the video game with the motor cycle(typical boy) and went straight to it. Well while he was climbing up on it we were standing by him letting him be independent with out mom being an over protecting mom that I can be and wouldnt you know it the one time that I dont force him to let me help him up he gets hurt. A kid ran up to the other side and before I could grab him the motor cycle leaned over and Nathen went flying. He hit his head on the edge of the metal box that the motor cycles sit on. I was freaking out, crying and telling Chris we had to call the doctors because his platelette count was low that day and with the chemo and the places where the cancer is are alot weaker. We called the doctor on call and she said to bring him in right awsy and they would do a cat scan and give him plateletts to make sure he is ok and does not have bleeding on the brain. I was thinking Oh my God if he is hurt bad because I did not force him to let me help I will feel horrible.Luckily he has no bleeding and his platelett count came up to 84 from the transfusion he had earlier that day so his bruise is not bad at all.God was watching over us for sure that day.his platelett count that morning was 17 and he had gotten plateletts but on previous days when he would get plateletts his counts would only come up a few numbers and still be extremely low so I am positively sure that God put his hand out and helped us that day by bringing his platelet count up so high. Before this last round of chemo we had gotten some more test done and the results were very promising and very scary at the same time. His MIBG showed that the spot on his skull was the only place lighting up now and his bone marrows were good,The only problems were they were not able to get marrow out of his right side and on the left side,front and back there were cells that they could not identify. I was like OK, wells lets send them off some where else or something, UnIdentified cells is not a good answer for me. Its not comforting for me to hear that he has cells that were not there before but are now and they dont know what they are. We will be having a surgery to fix his stomache where the stomache does nto empty into the intestine at all now on May 8th and then we will get all his test done again to find out where the cancer stands and where we go from here. I will tell you one thing though. By looking at him and chasing him, you would never know he had cancer if he wasnt bald. He acts like a normal 2 year old now as far as being active and throwing trantrums and everything. ITS GREAT! It stresses me out with him and his TPN tubes trying to get him to sit still so he does not pull them out but it is very nice to see him so active. I am praying that this is almost over and the test show NED(No Evidence of Diseae) which basicly means he will be in remission. Please pray for our upcoming surgery to be a success and for Nathen's nausea to subside afterwards and pray for his test to show NED and for us to beat this horrible body invader. I have one other request, When saying your prayers please include all other families dealing with such a horrible disease as we are. I was at the clinic on Wed. and there was a young famliy with their first daughter playing the the play room where we were at and I was watching her thinking what a sweet little girl and then the group of Neuroblastoma docs came in and then mom was crying, I knew that they had jsut given them the diagnosis and it brought me back to July of last year and how it felt for me and the pain and hurt I felt for my baby. Dad had taken their daughter out to give mom a moment to gather herself. She sat there with her head in her hands trying not to be too noticable but I could see her body shaking from crying. I went over and put my hand on her shoulder and told her it is going to be OK, you are in a great place. I pointed at Nathen and told her he has Neuroblastoma and you would never know it by looking at him. I told her almost a year ago we were diagnosed and he was very sick but we have came a long way and he is doing great. I told her if she needed anything or even needed to talk not to hesitate to call me. I gave her my info and gave her Nathens web address and told her there were alot of links to information on there that would maybe help her understand about the treatments and the disease. I just wanted to reach out and let her know that she is not alone and that if she needed anything, there are more of us out here that stick together and bond together to get through this. She also told me that she is pregnant with their second baby so I am praying for her to keep her stress down and have a healthy pregnancy in spite of what she will be going through. I prayed for them that night and they have been on my mind ever since. So please say a prayer for them as well and for their sweet little girl. Thank you to you all, your support has meant the world to us and has helped us stay strong,
Amanda

Tues.. April, 8, 2008

Nathen Just finished his ninth round of chemo. We gotthe results of his latest MIBG scan and they are somuch better than before! We were told that the spotson his femurs, spine,hips and jaw did not light upthia time, meaning that they may have resolved fromthe last round of chemo.We still have a spot on hisskull that we are praying this last round(9th round)will clear up. Nathen has been alot sicker from thisround than he has been in a while. We found out 10days ago he also has a digestive track bug calledC-diff which is very contagious. They think he got itfrom being on all of the antibiotics which kills offall the good bacteria that fight off the bad bacteria.We have been on isolation so that he does not passthis on to anyone else. Due to his tummy problems weare unable to treat it the usual way with oral flagyl.We tried but since nothing goes through his tummy themedication was unable to reach where it needed to goso now we are on the IV form of it. We were supposedto be inpatient for this last week for all of ourchemo but every day I would pack up the stroller witha weeks worth of stuff for Nathen and I and sit thereat the hospital for them to wait til around 4pm totell us that they did not have any beds for us so wewould have to go home and come back first thing in themorning for chemo again. We ended up going in all 5days for the chemo even Saturday and Sunday and thencoming home. We finished the last dose on Monday sonow we are just waiting for his counts to drop and thefevers to start. In spite of all the stomachetroubles, Nathen looks and acts soooo much better thanhe was while we were in OKlahoma. Things have beenvery crazy around here this past week or so.. I havebeen very down about my two older kids not being herewith us and in the past week there have been twokiddos earn their wings one of which we had a closebond with, we shared a room with her for about a weekin the hospital and had gotten close to her and herfamily over the teo weeks prior to our sharing a room.I am here to say that she was such a sweet heart andit tears me up knowing such a sweet little princess isno longer with us. I know she is in a better place butI still hurt for her and for her family. I ask nowthat you not only pray for us, but please PRAY andPRAY some more for all of the families going down thissame road as we are. Thank you to everyone foreverything you have done for us, I cant even tell youhow greatful we are. I know that all the support,prayers, and kind words have helped us this far. Ireally do feel that God is listening and he isanswering your prayers and ours for our son. We loveyou all... Amanda

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Thank you to everyone for your prayers and support! Nathen's mommy, Amanda, should be sending us an update soon, so check back! Thanks again...

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

Sun February 17, 2008

Naters Update 2-17-08Nathen is still heavily sedated and continues tobattle with keeping his blood pressure up. He is stillon the ventilator and still has all the drain tubesrunning from him. He now has three drain tubes plusthe one going down his nose into his tummy and the onerunnig from his feeding tube and also a catheter. Thatis a total of 6 tubes running from him to drain fluidsfrom his little body. They started giving him a verysmall dose of lasiks today to help promote hisunination to help get some of the extra fluids off ofhis body. He is now taking about 7 breaths above theventilator and a total of between 31 and 33 breaths aminute with the help of the ventilator. His body iscompletely swollen from head to toe, evenhis littlegenitals are HUGE and swollen. Dad said he looks likehe has a mango in his pants and says just seeing thathurts him. I can only imagine the pain. Thank God heis asleep for all of this, I would not want him tofeel the pain. He is doing better than he has been.Its just going to be a slow recovery. We are still ina critical time but every day he gets a little better.Once we have some of the extra fluid off he bloodpressure and his breathing should stablize more. TheDocs seem to say that we will probably be here atleast til the middle or end of next week and then whenwe get the breathing tube out we will go back toMemorial Sloan Kettering to finish his recovery. Dadand I are both a mess emotionally and physically rightnow. I am very glad we ahve each other right now. Itwill be very hard for me when he goes back hometomorrow and I am here alone in the ICU with Nathen.PLease keep praying for my little booger's recovery.We love you all Amanda

Friday Feb 15, 2008

Nathen has come through surgery and he is doing verywell. Dr. Laquaglia got about 99.9% of Nathens Tumorout of his tummy. He had to leave a small amount(about2mm) on his artery going to his left kidney. I am sureit is because it was just too risky to or else I knowhe would have gotten it! Nathen did get to keep hisleft kidney(YAY!) but we had to lose his left adrenalgland. His galbladder had to go as well. Dr. Laquagliasaid it was a hard as a rock just like the tumor was.We are now in the ICU unit and we are expected to behere until the end of next week some time. Nathen ishooked up to a ventilater and is on medication whichwill keep him asleep for quite some time. They seem tothink he will heal faster and he wont be able to pullthe tubes out. He came out of surgery with a urinecatheter, a chest tube(to drain excess fluid off) andthe ventilator tube. He started having problems withhis oxygen level and his blood pressure dropping sothey did an xray and found that he had alot of fluidon his right lung. The Dr. decided to put a tube intohis right lung to drain off the excess fluid and theydrained 85ml off and it is still draining slowly.After they drained the fluid the top part of the lungcollapsed so now we have the ventilator pumpingpressure into the lung to keep it expanded. Thenearlier this evening Dr. Laquaglia and the attendingDr. here at this hospital noticed that his urineoutput was very low so they decided to do a bladderpressure test to see if he had some issues with isbladder. The pressure was around 27 which 18 to 20 ishigh so 27 was very high. They put another tubethrough his tummy to drain the excess fluid off of hisabdomen and got a whopping 300 ml and it is also stilldraining some. The drs say this is not too uncommonafter these surgeries none the less it does not makeit any easier to see or watch him go through. I amextremely nervous and emotional right now. Chris(dad)has to leave us on monday and go back home to get backto work and get his stuff packed up to move out of hisapartment and move here for three months with Nathenand I. Please everyone keep praying for my little Man.He has a long way to go. I will keep you updated asmuch as I possibly can. We do not have internet accessin the ICU area and we are not allowed to have ourphones turned on as they will interfere with themachines. So as I can I will update everyone. Thankyou all for all of your support. Amanda

Wednesday Feb 13, 2008

Wednesday February 13,2008 Yesterday we went in to see the docs to get the final YES or NO for surgery on Thursday. We got a big thumbs> up that the surgery was a go. Dr. Laquaglia had to go over some things with me about the surgery. I am scared to death. They said that the surgery will last all day long! Oh my gosh, my nerves are going to be stretches to their limits tomorrow waiting. Then they said that Nathen will be in the ICU unit for a few days with a breathing tube and an epideral for pain medicine and also have tubes running out of his chest and his tummy. I am a mess, I laid here til 4am and could not fall asleep and woke back up around 8am. Chris (daddy) is coming today to be here with us through the surgery which will be great to have him here for Nathen and also for me. Nathen sure misses him a bunch he always wants to go find daddy. It breaks my heart but I know we are doing this so that Nathen can have a long full life and daddy will be here soon to be with us. We plan on taking Nathen out for the day, maybe to the aquarium or something like that. We want this day to be a special day for him and let him enjoy it as much as possible. Please everyone Pray extra hard tonight that the Good Lord will guide Dr. LaQuaglia's hand during surgery tomorrow and he> will be able to remove all of Nathen's tumor and fix his tummy. He told me that the surery is life> threatening, which I already knew, but I asked his Nurse praticioner how many kids has he lost in surgery and she said none that she knows of. That made me feel a little more relaxed but Im still a ball of nerves. She also said that He will try to get everything but if he feels its not safe to get something he wont attempt it. Thank you to everyone, I know I dont get to thank each person individually for everything you do but I want you to know that It is very much appreciated. Amanda

Monday Feb 11, 2008

NaterBug Update 2-11-08 Well this morning Nathen has his temporary central line put in for medications and other IV needed stuff til his surgery. He is doing very well and we are back at the Ronald Mcdonald House. While we were in the> procedure room with Dr. LaQuaglia waiting for them to put Nathen to sleep I got to see what a reall nice guy he is. He was picking at Nathen trying to get him to laugh and talking to him. Of course Nathen being a stinker that he is was yelling at him til Dr. LaQuaglia told him that he was going to give sneaky snake a drink. Then his whole demeaner changed, he began do make the smacking sounds with his mouth and say mmmmm. Then they gave him the medication to make him sleepy and Dr. LaQuaglia said OK Nathen lets go to sleep, you are such a sleepy boy as he laid him down. I left the room and he let his hands go to work on our little man. Before they started Dr. LaQuaglia mentioned that Nathen was still on the surgery list for Thursday. I was so excited. We have to go back in the morning for some more blood test and we will know for sure if we will get to have the surgery on Thursday or not. The docs said that his blood cultures have not grown anything so that is great! We caught the infection in time before it got anywhere. The lump that was on Nathen's arm is now gone as well which is sooooo awsome... I was so worried about that. The docs said it was probably from the picc line not being stitched in and it slipped out of place and caused the medication to go into his vein instead of the main artery where it was supposed to go. They said that when they put them in here they put a couple of stiches in around it to keep it in place which only makes sense. You have this long tube going into your arm all the way around to your chest where the main artery is with nothing to keep it there, stitching it in would be the smart thing to do. Well anyways Nathen is doing great and I am very excited about being here with such skilled Docs. I definately am not excited about the temperature though. It was 11 degrees out today when we left the hospital. I know alot of people asked what kind of things we could use and need. I found out today that we have a CVS and a Walgreens pharmacy within walking distance so gift cards to those places would be of big help to get diapers, soap, laundry soap, and other needed items. I am very greatful to each and every one of you that have been here supporting us through this journey.. Keep on praying.... we are chucking along this track.. We love you all Amanda> http://www.nathentrueblood.com/

Friday Feb 8, 2008

Friday Feb 8, 20008

On Wed. the 6th Nathen and I flew from Oklahoma to New York. Our plane was supposed to leave around 7am and well... we got to the airport with 20 minutes til time to take off. We missed that flight and settled for the next flight which had one stop with a two hour lay over and it did not leave til around 11:30. GREAT, right? After waiting around all morning for our flight when it was time to go it took Chris and I almost 10 minutes to get throuhg the security gate because of all of our stuff and the security procedures.. I was thinking OMG I hope we dont miss this one. When we got to the gate they said oh that flight was delayed by about an hour and a half and they just forgot to update the computers... wheeww thank goodness. I did not want to wait around for another flight again. The two hour lay over became a lay over less than an hour by time we got there. It was such a mess. I had Nathens stroller, his car seat, his cooler with his medicines and two carry ons. I had bought a little flimsy dolly at the airport to help get the carseat from one plane to another but that was almost a bigger pain then if I had not used one. the base of it was not deep enough for the car seat to fit on correctly so everytime I would hit a bump the whole thing would tip over and I would have to stop and re-strap it down. Then we get to Newark, NJ and have to take a taxi to the Ronald Mcdonald house... he must have taken me the scenic route because it was a longer drive than it took Chris and I and he charged me out the butt for it. I was like HOW MUCH? Finally got upstairs and got settled in but unfortunately Nathen Slept all day through our trip so he was up til like midnight and then I was unable to fall asleep, just too much on my mind. I finally fell out about 2am. Got back up at 530am to get to the dr's in time for his 7am appointment. His appointment went great and the testing went smoothly. Took about an hour and a half for the test and I ended up fallin asleep in the waiting room waiting for Nathen to come out. Then this morning We came back at 8am another test. It was so miserable for me, they had to put a feeding tube down his nose to get the die into his tummy for the test. I was balling my eyes out, Nathen was screaming mamma mamma mamma, It broke my heart that I could not just say ok forget it Nathen lets go! I knew that it had to be done so we could find out what was going on with his tummy. When they did the test Nathen had to hold completely still so I had to hold his arms while they were putting the dye in and could not let him move. He would puke and look at me and cry and they would pump more in. I could not keep my eyes open I was crying so hard. My poor baby has been through so much, I would give anything to take his place and hae him well again. They did tell me that he has a hernia and this is why he has been puking so much. I was releived that they found out what was going on and the test were not for nothing. I was very FRUSTRATED though that the hospital in Oklahoma could have done these test months ago and we could have had an answer and fixed it a long time ago. Instead they would tell me I dont know why he is puking but here is some more meds to help with the nausea. I even asked several times can we run some test to figure out what is going on and I kept getting NO. I am very happy that we are here now. I know this is the best place for Nathen to be. After the test this morning Nathen needed his dressing changed around his PICC line and he also has been running low grade fevers off and on so we came in to see the docs. They looked and said it was an infection in his arm just north of the place where his PICC line goes in at. They have admitted us and are going to take it out and he is going in for surgery in the morning to get a temporary central line put in, in the morning. They also said that due to this we have to reschedule his Tumor removal surgery for a later date. Not sure when yet but I will let everyone know as soon as I get information.Please keep praying.
Amanda

Wednesday Jan 30, 2008

Wednesday Jan 30, 20008

Over the past couple of weeks Nathen had been doingreal well, playing with his sister, brother, andcousins. Then on this past Saturday Night about 1:30amhe woke up puking(normal occurance with all of Nathenstummy troubles) while I was cleaning him up I noticedthat he was really hot. I took his temperature and itwas 102.3. I called the doc on call and they said totake him to the emergency room. We got there and theyfinally got us back to a room and they took his tempagain and it was 106.5, thats right 106.5. I wasfreaking out and crying, never havde I seen any of mykids with a temp that high.They gave him some tylenolthrough his J-Tube in his tummy and drew blood forlabs and for a blood culture. They drew blood from hisport and also they drew it from his arm to find ot ifhe had an infection in his blood, in his port orboth.well before knowing what was going on with him,as soon as his temp came down some they sent us home.106.5 is dangerous for a normal healthy kid but acancer patient to have a temp that high cant be good.Monday morning I called the oncology clinic to findout what the deal was and they said to bring him inthere to be examined. By thie time I was soaggervated. I told them that I was not going to dragNathen out into the cold again for them to tell me totake him home and give him tylenol again. The Nursesaid it could be fatal if I did not bring him in. Isaid " well why in the world did you send us homethen?" I got the answer well his counts are up andthere was no reason to keep him. I was like WHAT EVER!I am sure you can relate to how upset I am at thiswhole situation by that time. While we were there atthe clinic they drew more blood for another set ofculures. one in his arm and one from his port. Thenthe PA told me that when they told me his bone marrowwas clean that they were wrong he still had cancer inhis marrow. OK NOW I AM FURIOUS over Nathens care heis receiving. Then I asked to have a black and whitecopy of the results to put with my recrds. Well ittook her almost an hour to print out a single piece ofpaper and come back into the room. When she came backshe said we were going to be admitted into thehospital and that His blood cultures had grown a staphbacteria in his blood stream from both his port andhis arm stick. They said that the bacteria is a normalbacteria that grows on your skin and he got it fromhimself, however it is supposed to stay on he skin andnot get into the blood. And when it gets into theblood it is very hard to get rid of especially in theport because the bacteria gets in the plastic and itis nearly impossible to get out. they said they willgive the antibiotics 48 hours and if it comes backthat it is still growing in his port that they willhave to take him to surgery and take the port out andplace a pic line til the infection is cleared up andthen go from there about placing a more permanent typeof line. Well today Wednesday, they came in and toldme that they will be taking Nathen into Surgery toremove the port tomorrow and place the pic line. Weare hoping and praying that all of this mess does notpostpone all of Nathens test and and his surgery onFeb 14th. Please everyone keep Nathen and my family inyour prayers. If anyone knows of a cheap place to livein the upper manhattan area in New York I wouldappreciate any info on it. Thank you to everyone foreverything that you have done and are doing for us inthis trying time. It is very very much appreciated.

Thursday Jan 24, 2008

Thursday Jan 24, 2008

We are currently on our way back from our visit to New York to see the doctors at Sloan Kettering. As soon as we got to New York City Chris and I were both ready to turn around and go back home. If you have ever been to New York, you will understand when I say THAT PLACE IS CRAZY! I told Chirs, Were not in Kansas anymore Toto. It is a very busy place with lots of people. And the rudeness of people on the streets, OMG! One thing I will say the doctors were great and I knew right away that this was where Nathen needed to be. I felt like any chance that Nathen will have to beat this horrible disease he would have it here with the best of the best. When we got into the room there was a room full of people with great attitudes and very friendly. Basicly the whole"team" was in the room with us. They were very upfront and informing completely opposite to what we have experienced with the hospital that Nathen has been being treated at now. After talking to the doctors they said they would look into Nathen's records and test more and call us back that afternoon. Sure enough a couple of hours later my phone rang and it was Dr Laquaglia himself, not a nurse, not a secratery, but the man himself to discuss his plan. He asked if we could return to New York early next week to start testing of Nathens tummy and harvesting of Nathen's Stem cells before surgery. He says we need to do testing to figure out the reason that Nathen is puking so much( thats what we have been saying for months now, thank you very much, but no one would listen) then On February 14th, Valentines day We will take Nathen's Tumor out of his tummy and see if we can save his kidney. He says we may not be able to save his left kidney but he seems very confident that he can remove all of the tumor. The way Chris and see it, he can live with one kidney, but not with this intruder in his little body. Before we left Nathen gave the docs a high five, as if he knew they were going to help him. We have had a long trip and both Chris and I are worn out. And Nathen, he has been a trooper through it all. I will post some pics as soon as I can get a chance to upload them. Please continue to keep Nathen and our family in your prayers and pray to God to guide the surgeons hand in removing our little mans tumor.
Amanda

Monday Jan 7, 2008

Monday Jan 7th, 2008

Well we started our sixth and seventh round of Chemosince my last post. Nathen had gotten a bad infectionin hs blood during his 6th round and had to be onantibiotics for 14 days. His counts surprisinglyrecovered alot faster than all of the other rounds. Hestayed bottomed out for only a few days instead ofalmost two weeks. We finished our 7th round on the31st of December and we are still battling getting hiscounts to recover. in the meantime, he has had alot ofother problems start up. He has began to have alot offluid retention and has gotten very swollen all over.He now has to wear 4t PJs due to how round his bodyis. Over the past week he has started having adificult time breathing. The docs say he sounds clear.He just seems like it hurts to take a breath. He alsostatred moaning alot the same time the breathingproblem started. He is now on Morphine every fourhours and they upped his dose today to help ease hisuncomfortableness. They can not give me a reason whyhe is having so many problems which is very nerveracking for me. Today we had an echocardiogram done onhis heart( sometimes if you have a problem with yourheart you will retain fluid). I hope to find out theresults of that tomorrow morning. Kinda worried aboutthat, hoping and praying all will be ok, but at thesame time wanting an answer why my baby is having suchpain and breathing problems as well as retainingfluid. I talked to Slaon Kettering today and we have ascheduled date for Nathens consultation and secondopinion set for January 22nd. I am hoping that betweennow and then we can some how raise if not all thenmost the money needed for his surgery. Maybe thedoctors there will let me pay most and make paymentson the rest. Please everyone keep praying for mylittle man and pray for our family to stay strongthrough this trying time. Amanda

Monday Dec 3, 2007

Monday Dec 3, 2007

We got some bad news over thepast few days. Friday we found out for sure Nathenstill has nueroblastoma cells in his marrow. SaturdayThe doctor on service told us that they finally gotthe full report back from the labs. They said that Hehas 1-2% Neuroblastoma cells on both sides of his hipsand also that his tumor had grown some on the bottomside and that the top side of it had shrunk minimally.We will be starting Chemo again in about an hour. Wehave two rounds of a different kind of chemo that willlast 5 days long each. We will get 5 days then restfor two weeks to let Nathens body recover then we willstart the second round for 5 days then rest for twoweeks again to let his body recover. Then we will berepeating all the test and I pray to God that Nathensbone marrow test will be clean and the tumor has notcontinued to grow again. Maybe GOD KNOWS we neededmore time to raise the money for Nathens surgery andwith us having to get two more rounds of chemo we wontbe able to have the surgery for at least 6 more weeks.We need his marrow to be clean to have the surgery. Iwent to the chappel a couple of nights ago and Iprayed, and I asked GOD to please heal my baby and todrain his cancer out of his precious little body. Mybaby has been through so much and I am greatful that Ihave had so many people there for me and praying forus. I posted an entry in the guest book to thankeveryone who showed up to the benefit and Thankeveryone who put it together for us. SO.... THANK YOU!I can not even begin to tell everyone how GREATFUL Iam for everyone and Everything that has been done forus. I also want to tell everyone what great people Iam surrounded by here in the hospital. There are alotof families that are going through similar situationswith their children and still find a way to offer ahelping hand to the Nathen and our family, even thoughsome not as bad as Nathen's case but none the less itis difficult for any parent to watch their babies gothrough such an ordeal and watch them get so sick andfeel so helpless in their healing process. All you cando is pray to GOD that the medicines given to themwill heal them and offer comfort and love to them whenthey are so confused as to what is going on with themand why they feel so bad all over. I know that GOD hasa plan for all of us and that GOD picks people to dealwith such hard things for a reason. Maybe he chose usto strengthen our love and strengthen our faith. Ihave never really been a religious person and I cannot recite a single verse from the bible but I do knowhe is there and I do know that he watches over us. This whole ordeal has brought me alot closer to GODand I have learned from other families here in thehospital to put my faith in our Holy Father and hewill see us through this difficult time. Pleaseeveryone keep praying for Nathen's Bone Marrow to beclean at our next bone marrow test and Pray for theshrinkage of the tumor. MOM.... I LOVE YOU... Thankyou so much for all you have done for us. I have thebest mom in the world.. She has been so supportivethrough all of this. I will always tell Nathen whatlove surrounded him through his journey. Christina youare my best friend and I am happy to have you by myside through this journey as well. I know I can alwaysdepend on you to be supportive and to do all in yourpower to help us. I will keep you guys informed onwhen we get more information on his journey throughthis rough time... Amanda

Thursday Nov 29, 2007

Thursday Nov 29, 2007

I dont know where to start, I have bad news... Thedocs never showed up today to tell me what was goingon and to tell me the results to any of the test wehad done so I had the nurses call and tell them I needanswers. Well then about 15 minutes later the PA(Physicians assistant)called and told me that his bonemarrow came back with cancer on both sides and she did not have the exact numbers in front of her so she said the docs would talk to me about it in the morning during rounds. On top of that they said the tumor has not shrunk hardly at all. Again I will have to waittil the morning for the exact report on that as well..Please everyone pray... I am very scared of what thedoctors may say in the morning and I will post againtomorrow night. THANK YOU to everyone, your continuedsupport is appreciated. Amanda

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...

Wednesday Oct 24, 2007

Wednesday Oct 24, 2007

Well another post with some not so great news.. Over the past couple of days Nathens has had more problems with his feeding tube. Monday Night around midnight the tube came completely out of his stomache. It was very painful for him and there were still stitches on it, which were used to keep it attched to the J-junum(lower intstine) They held him down and put it back in and said that it would be ok. Then the next morning(Tuesday) The surgery team came in and shut off his feeds and told me to not let anyone put anything through it til they could do an Xray with contrast to make sure it is in where it needed to be. Basicly he had his feeds shut off for most of the day. Then around 1 they finally took the Xrays and gave us the go ahead to turn them back on. But unfotunately they wanted to up his rate and when we did that evening he threw up about an hour later(first time in about 3 or 4 days) and out came the tube again. SO PEAT AND REPEAT.. Turned off feeds They held him down re-inserted the tube into his sore infected belly and told us not to put anything through til they did another Xray.. and then about 10pm they gave us the go ahead again and the doctor left orders to turn him up 5ml by the end of the night and I told them no way.. out of the question... not til the docs came in in the morning and I could talk to them and get a set plan in writing for everyone to understand and follow. Im not going to sit back and watch my baby suffer more than he has to for no good reason. If they cant understand he has to go up slowly then I will have to tell them to just put him back on TPN( IV nutrients) and stop the feeds that are making him throw up and get sick. I will keep you all informed on how things go over the next few days. His chemo is due Friday October 26th but his counts have to be high enough to start so time will tell.
I want to Thank My mom and My two younger brothers Brad and Bobby for taking up money to set aside for our trip to New York. I know they were not able to raise as much as they would of liked to of raised, but every bit helps and they did a great job! Thanks you guys, I LOVE YOU. I also want to thank everyone who donated money, We really appreciate your help. I hope to find out in the next couple of days about the trip to New York, as of right now I am waiting to hear from the insurance so I can coordinate the trip and plan it all out. Thanks every one so much. Please pray for his counts to recover and his next bone marrow to be clean.
Amanda

Monday Oct 22, 2007

Monday Oct 22, 2007

Quick update
Just a quick note to everyone. Nathen has been feeling pretty bad over the past week or so. He has had alot of pain in his tummy where they put the feeding tube in and he started having some blood and fluid draining out of it last night. They changed his antibiotics to a very strong one and said he has an infection in it. His morphine dose has also been doubled to help him be more comfortable. Over the weekend the surgeons stopped by and we discussed all the problems Nathen has been having with the feeding tube and the surgeon said that if they cant resolveall of his issuses with the tube they may end up just taking it out and going from there to figure out about nutrition for him.. so this next week will tell alot about what they plan to do and Chemo starts again on Friday. Another thing, just want everyone to know that we dont have alot of space on here to put up photos so I have added them to my myspace page so that everyone can go look at them for now til I can figure out how else to get them added on here. The URL to my page is www.myspace.com/mandypootoyou . Let me know if you have any problems getting to the pictures and I will try to rush on getting a photo host or something. Thanks to everyone for all of your continued support through this rough journey. Keep praying for mommies little turkey...
Amanda

Monday Oct 15, 2007

Monday Oct 15, 2007

NEW UPDATE ON NATERS 10/15
I want to appologize to everyone for not posting in so long, We have been having a rocky time over the past month.Last I posted Nathen was about to start his third round of chemo and he was doing fairly well. He had gotten to where he had taken a few steps here and there for mommy and daddy and when his sissy and bubba (Nicole and Zach) came to visit him he walked all the way from the family area to our room. He also was licking on foods and chewing the flavor out and spitting it back out. Then we started his third round of chemo which was 5 days long and he got sick all over again. he stopped walking stopped showing interest in food and also started running fevers again. After his counts came back up and the fevers stopped we got to come home for a few days. We came home on 9/27 which was a Thursday. Thursday night Nathen would not stay put, did not want to be inside.. he wanted to go go go, so I bundled him up and we went. We drove around for a while and around midnight we went to grandmas house and visited with grandma and grandpa, even though it was late they were both excited to see Nathen up and feeling so much better. After about 2 hours at grandmas house Nathen was pointing at the door again and was ready to go go go again. So we went, and we drove some more. When we got home we sat in dads recliner til about 4am when he finally passed out.On friday I mentioned to dad that I wanted for us to take Nathen down to Lawton to visit his family and to get nathen OUT while he can. dad and I both agreed that, going down would be a great idea as long as everyone knew that if they had been sick or have been around someone that has been sick to not come visit for Nathens sake. I called Aunt Kathy and told her what we wanted to do and I could hear in her voice that she was excited about us coming down with Nathen. Friday night Nathen once again wanted to go go go.. so I once again drove drove drove..We drove around for a bit then stopped by grandmas again but Nathen started to point at the door again wanting to go.. so we drove around for a while more and then I decided to go to walmart and walk around with him to save on gas and maybe get him to pick some food out that he would want to eat. Dad called us around 3:30 to make sure we were ok and to see how come we were not home yet.. told him that when I asked Nathen if he wanted to go home he shook his head no. After walmart we went home and Nathen finally passed out about 4:30am. On Saturday we went to see everyone in Lawton , when we got to Aunt Kathy's house she came out to greet us and Nathen was excited and smiling but as soon as she opened the door to get him out he started crying and realized we were not going bye bye anymore.. We went inside and Nathen was not happy with anything.. I took him back into little Roberts room to try to get him in playing and he was shaking his head no.. then Robert started playing peek a boo with him and he started to smile... Then Robert started beating his toys up and Nathen was belly laughing at him.
We came home around 6pm on Saturday and that night Nathen actually wanted to go to bed with mommy and daddy instead of sleeping in the recliner (wheew). The recliner is comfortable but Nathen has had tubes coming out of him and I was affraid of pulling out the tube or hurting him so needless to say I sleep very uncomfortable in the recliner. Sunday we cooked dinner and Nathen sat at teh table with us and tried to eat with us, he was very interested in dinner which was a great sign. After dinner we loaded up to go back to the hospital to get all his pre op stuff taken care for surgery Monday morning. Nathen screamed for like 3 hours straight wanting to leave and not be here at the hospital. Finally the doctor caved in and gave him something to help relax him but it wore off after an hour and then he started again. I called Chris and he came back up here and we walked around with Nathen til he fell asleep. I was sooo glad that dad came back to help us. I was a mess watching my little man cry and not be able to help him and calm him down. Monday Morning 10/1 he had his surgery and when he came out of surgery he was in the recovery room when dad and I came in he was crying mamma mamma. I went over and grabbed him and calmed him down the best I could. Then I handed him to dad to hold so I could go prepare his bed and room for him since we had moved to a new room while he was in surgery. The next day they started his feeds through his J-tube and the doctor wanted him up to 35ml an hour by that night, which is not alot but when you have not processed anything through your digestive track in over three months it is alot. By that night when they got him up to the 35 ml he was puking and puking and had diarhea. I tried to tell the doc the next morning that it was too much too fast but she ignored me and told them she wanted him up to 45 ml by that night.. Well for the next several days Nathen was as sick as can be and was throwing up and pooping on average 12-15 time per day of each. I was at my wits ends with these doctors not listening to me and me watching my baby be so sick knowing that it could be stopped if they would listen.We started his forth round of chemo on Friday the 5th which did not help matters any. Finally The GI doc came up and asked me about what was going on and she said I was right it was too much too fast and they had to stop. She told them to stop the feeds and give his gut a break and do the TPN( IV form of nutrition) for a few days and then we would slowly start him back on the feeds. Well as soon as they stopped the feeds he quit throwing up and quit the diarhea.. IMAGINE THAT.. Just like I had tried to tell them it was the feeds making him sick, so basicly he was getting sick over and over for almost a whole week for nothing... Then on Friday they started his feeds back at 10ml an hour and he started gting sick again.. no where near as much but he was getting sick so on Sunday the GI doc came in and told them to stop the feeds again and we would do some test when his counts come up again. So for now he is neutropoenic and is running fevers again... last night Sunday the 14th is when he started the fevers and it got up to 103.7 so now that he is not sick from the feeds he is sick from the chemo. Keep praying for him and praying for us to make it to New York where the doctors are that specialize in his kind of cancer. In the mean time I am getting with everyone I know to try to figure out a way to get money raised to help us get there and set up living arrangements for Him and I. If anyone is interested in helping us out with finances they can contact my mom or myself through nathens email address or my email address. Amanda.camp@yahoo.com or Nathen's email nathentrueblood@verizon.net. Thank you to everyone for your support in this very trying time that Myself, Nathen and our family are going through.
Amanda

Thursday Sep 13, 2007

Thursday Sep 13, 2007

Update on my little man 9-13-07
Nathen has been doing alot better,last week we had several test done to see where the cancer stands... over the past three weeks we had cat scans done that the doctors had told us that his head scan showed that it was normal again and the one of his stomache showed that the lymph nodes that were all cancerous in his belly were gone and the tumor had calcified some.. Then last week they did the MIBG scan(neuroblastoma scan) and the doctor came and told me they were wrong all of it was still there.. his head, and his belly.. they said that it has shrunk some but there are no clear areas yet. they did a bone marrow test as well, when we first came in his bone marrow was 80% neuroblastoma cells and the bone marrow test from last week showed that one side had 20% neuoblastoma cells and that the other side had 30% Neuroblastoma cells..so the bone marrow has gotten alot better, we are hoping that by the end of this round of chemo that we started yesterday his bone marrow will be clear so we can harvest stem cells for his stem cell transplant at the end of the chemo and surgery. We have 5 days of chemo this time and we will be here for the whole 5 days and if he handles it ok we may get to go home. If he does the same as the last two times we will have to stay here til he gets better from the chemo which has been about 1 or 2 after the last rounds of chemo. I am hoping we will get to go home this time though, he and I both need to get out of here for a while.. it is taking a huge toll on us both. once again thanks to everyone....
Amanda

Sunday Sep 2nd, 2007

Sunday Sep 2nd, 2007

GREAT NEWS!
Friday August 31st we had another cat scan of Nathens head. That afternoon the doctor stopped me in the hall to tell me the results. I had Nahen in one arm and his IV pole in the other hand, then the doc says, Hey I just got the results back from his cat scan.. I was like ok... kinda scared but then she said the radiologist told her that the cat scan was completely normal. I asked what does that mean and she says that there was not any cancer left on his head. She says that it did not show any lit ups spots that are cancerous.. This is great news since he had a large lesion that went from the front of his skull to the back of his skull and also one on his bottom jaw.She said that when we get the Neuroblastoma scan next week that it may show some signs of it still there but it would be very little if any because if it was the same it would have shown up on the cat scan. needless to say I was crying my eyes out in joy and we proceeded to walk down the hall and I was jumping up and down and hugging and kissing Nathen all over. He looked at me like I was crazy and was trying to figure out what Mom was doing. We get a kidney scan, bone scan, cat scan of the rest of his body, bone marrow test and the neuroblastoma scan(MIBG) This coming week. I am very anxious to find out all the results to see how much the chemo has affected the cancer in my little mans body. I will keep you all posted... thank you and please keep praying, I am convinced that it is working.
Amanda