Sunday, February 17, 2008
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, February 15, 2008
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, February 13, 2008
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
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.
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
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
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
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
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...
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
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
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
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
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
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
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