2nd round

okay are you ready for an update, there is a lot to share.All of you who have been through this before feel free to laugh, go ahead it's fine. Andrew went back to PCMC on Monday we came back home on Wednesday. This time it did not go quite as well as last time, not that it went bad, just different. Andrew was much sicker and so ornery. Monday went fine we finished chemo at about 9:15. Tuesday we hung out and endured being sick and complaints of bad tummy aches and going to the bathroom every two hours. This is due to the fact that chemo causes kidney damage but if they make him go every two hours it lessons the damage. It is easy for him to go every two hours due to the fact that he is on large bags of fluids for this very purpose. Tuesday was also a very busy day meeting so many different teams of doctors. this was due to the fact that about a week before we went I felt restless inside, I have felt that we needed to move things along much faster. I am not sure why exactly I have felt this way I just know I have. When we met with Dr. Meyers early Monday to have Andrew's drain taken out I said to her that I thought you said we were doing chemo to shrink the lymphnodes but that test came back negative, so why can't we get on the transplant list right now. She said that that was a very good question, we want to shrink the tumors in general and the one especially in the portal vain, where they need to attach a new liver, but that my point was taken and she would check with the transplant people. I told her I just want to get a new liver and be done with everything by summer. She laughed and said that was optomistic but not realistic. I asked her why and she said because people do not die on schedule and it takes from one week to one year to get a new liver. Despite what she said I believe in miracles and know that the Lord is in charge. One thing we feel for sure is we do not have a year. The next thing I know I am talking to all kinds of people. I thought once you were in the clear the doctor called up someone and put you on the transplant list. Not that easy. Andrew has to be reviewed by many different teams of specialists and has to pass many tests and be discussed on review boards for a couple of weeks then if every team gives their approval we can be put on the list. according to the seriousness of the conditon, is where he is placed on the list. The list is nationwide and right now for pediatric transplants their are 6 children on the list. I found out that Andrew cannot have an adult liver but has to have a pediatric liver, because everything is done by weight and size. This particular doctor told me that pediatric donations are a little bit harder to come by, it is a lot quicker for an adult donor to be found, but not impossible to get a pediatric one. Wednesday we did meds to control his sick tummy and started on some of the tests we need to have to get on the list. Andrew did not handle all of this well he beccame angry and verbally agressive such as calling people idiots and would not respond to questions or had a total attitude and I felt mortified by his behavior. The nurses said they were used to this, that it is always harder on the moms. The oncologist psycologist said that his OCD was really coming out this time and mixed with not feeling well and the chemo and meds it was not pretty. He said he was really angry with me because I should stick up and not have doctors touch and check him especially in some places, but I was allowing it so in his eyes who's side am I on. I should be on his I am the mom. Sometimes kids can't see we really are on their side. Maybe if were lucky the chemo will kill off the OCD genes also. I'm kidding of course but I do whish so right now. We have loved all our nurses at PCMC but this time around we got a 50 year old male nurse named Irish. It was a blessing for Andrew this time around as he related to him very well, and the guy is a total prankster had us laughing the whole time we were their. Like the time he came in to empty Andrew's urinal (he felt dizzy so he would go by the bed in a urinal instead of walking to the bathroom)anyway he picks up the urinal and walks to the bathroom to empty it and sticks his head right back out the bathroom door and said lets see how your calcium level is and starts to drink his urin. I was shocked and said what are you doing that is chemo pee, Andrew is calling him a wierdo and he keeps drinking it I'm totally alarmed when he laughs holds out another urinal that somehow he had snuk past us with applejuice in it. We laughed and laughed. He said he was glad I handled it great the last time he pranked the patient with this stunt the kid laughed and the dad threw up all over the floor. The next thing I know Irish comes in to attend to Andrew and he keeps letting out stinkers and blaming them on Andrew. I really knew who it was, later I found out he hid a fart machine in the room and every time he came in he would push the button. Let the good times roll!!! Andrew also hallucinated--- I'm reading to him and he says mom turn off the t.v. I said it is not on. 10 minutes later in a more gruff voice he said turn off the t.v. I said it is not on. I keep reading to him and 10 minutes later he says I told you to turn off the t.v. you are being rude by not turning it off. I'm baffled but continue to read a few minutes later the doctor came in to check on him and in the middle of her exam Andrew sits up and yells I told you to turn off the t.v. now I hate Pirates of the Caribbean, the doctor looks at me I looked at her and said he has been saying that for the last half hour, she told me he was hallucinating. She said not to worry it happens once in a while and went out to check his meds. we came home and a home nurse came out to hook him up to saline with meds to get through the night and the next night. Tracy came over today to give him pain meds since they sent the wrong kind that has to be given through the central line. I was told how but still... I hope he gains weight this time around or he may have to have a feeding tube put down his nose, and we all know that won't go over to well. I really thought that he would have gained some weight he ate pretty good I thought these last few weeks but in order to gain weight he needs to eat 3000 calories a day so that afer the cancer eats its portion in calories their is still some to put on his body. also the things he likes to eat have changed. I learned this time around with the nutritionist that chemo kills some of the taste buds because they are fast growing and that the flavor of sugar is not really flavorful to chemo patients. So finding foods to eat has become a challenge and to get him to eat when his stomach is not hurting is also timing it right. I also found out chemo is an appetite suppressant (maybe I need a little)so they gave me some medicine to give him to get his appetite up and running. I have to find ways to add all the calories I can for him and find all the ways to cut them for me. It's not going well for me. As of now he feels really good. Lets hope he continues too... Thanks once again for all your prayers on our behalf, the sweet notes that come in the mail, and the anonymous donations, and the yummy meals that were brought this last week. We love you all and pray always that the Lord will bless you. We are keeping the Johansens in our thoughts and prayers. May everyone realize how fragile life is and that people are what make our lives go round. Without each other we would not have anything worth while to smile about. So be glad and smile at someone, wave at someone in passing and forgive those that have offended you! You never know when it may be the last time you see their beautiful smile upon their beautiful face. Thank goodness for the Lord's plan of eternal families. We love you all. The Arnolds