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