Final News

I need to apologize for the lack of info on the blog this last time, you see I spent 2 hours typing up everything last friday to only find out in the end that at some point the internet disconnected and I did not know, so the info you read about I was thankful that much was saved. I kept meaning to get back and update all the info but just didn't. All of that is irrelevent anyway in the news we received yesterday. I was not really prepared to hear what I heard and neither was Dan. I thought they would tell us how they would proceed with surgery and the risks and all that, but they simply told us that they have looked and looked and radiologists have reviewed and reviewed and doctors across the country have looked and that at this point their is nothing they can do. The cancer has spread to his intestins and is in all the major 4 veins and portal veins that they need to hook up organs to and so even if they attempted a multipile transplant that the portal veins wouln't be able to be used. The doctor said that no doctor would even open him up at this point the risk that he would die on the table is to high and if he survived the amount and quality of time he has left would be shortened. This Doctor said he even called his good friend in Miami who is the only doctor that he knows of that has done a multiple transplant at the same time to see if he would come and do it or give advice, he said no he would not that even though surgery itself was successful they all died within a couple of months. usually the cancer is in microscopic places and when you do a transplant it supresses the immune system and that cancer comes on with a vengence, so noone was willing to put him through that. They said to take him home and enjoy what time we have left with him. they said he would probably have a good few months where he seemed relativley happy and healthy but that when the cancer goes to his stomach it will be all down hill from there. We discussed chemo a little but they discouraged it saying in the last few weeks since we have done it it has spread and we know it won't kill this kind of cancer and all it does is make him sick and onrey and that we should just enjoy him while we can. They cannot give us a definite time line only becouse every one is different but probably 6 months to a year or less if it continues to go as fast as it is.

We are so grateful to all of you and for your prayers and fasting on our behalf, please don't stop praying I'm sure we will need it. Thank you to our present giver whoever you are the Faith and Hope blocks are darling and I'm sure we will need every bit of faith and hope. To our breakfast giver of doughnuts on Sunday morning what a fun treat that was, what a fun idea. We enjoyed them of course. As I type this blog up this morning through tears and a heavy heart, I am once again overwhelmed by the love of all of you, you see the doorbell rang and their stood Bishop Lacey at our door. I thought Dan had called and given him the news but he came to bring an early Christmas present a video camera, of course I lost it and cried some more and finally told bishop Lacey about our news and how Dan and I looked at each other last night and said we need to get a video camera, and that every year we always wanted to get one but their was never any money left over at Christmas to get one. We are full of gratitude to our video camera givers whoever you are may you know how grateful we are, and we will surley use it in the next several months and years ahead. I pray the Lord blesses all of you 100 fold for your service and secret acts of kindness, whatever we have needed seems to show up at our door or in the mailbox just at the time we needed it. There are no words to express our feelings for all of you, but I pray daily that we will be blessed with opportunities to serve all of you. Thank you to the Sprouse family and the McNaughtan family for winterizing our yard, its funny I look around and see all of these things that need to be done and we are either running to PCMC or truly they seem somehow less important to get done, its a strange feeling you want to do it and know it needs to be done but getting to it seems less important, so thank you to my wonderful neighbors for just seeing and doing even though we should have gotten to it I do have teenagers to help out.

In the meantime we are going to send Andrew to school and let him have as much normalacy as we can before he gets really sick. He keeps asking questions about dying and what is Heaven like. His uniqe personality keeps showing through even through all of this, you know whatever he is thinking he says. It is interesting the last few nights it is alsmost as if he knew even before we did that his time is coming to an end here on earth, because the last few nights as Dan and I tuck him in bed we have been up till about 11:30 talking about dying and Heaven and crying and trying to answer all his questions. He is a very smart kid but his sense of humor comes through such as he asked will I like Heaven we say yes he says I don't think so it is probably boring, or he asked do you sleep in Heaven we said probably not you don't have your body so you don't need to sleep he says then I don't want to go the heaven because I like my bed to sleep in, or I told him his mission may be on the other side of the veil and he said that is no fun that would be a dumb mission because he wants to stay here and go someplace cool, He goes around saying but you will be right behind me right mom you will be just a second and you'll be in heaven because in heaven every minute in heaven is a 1000 years on earth. So our saying around here is we'll be just behind you in just a second. We'll continue keeping you updated on this and Thank you so much to everyone again! We love you all! Andrew says he doesn't have anything to say.

miracles and hurdles and more hurdles and miracles?

well I know it has been a while. I have been so busy receiving informaiton and making decisions and running to PCMC that I have not had time, so I am putting carrots on hold this morning and catching you all up. Maybe if I tell you all about it, it might sound clearer in my head. (don't count on it). First things first, our thoughts our with the Johansen's. The service was beautiful and I thought the letter Keith read to his son, and his son's reply were very moving. Also thank you Keith for your thoughts of our family and putting that sentement at the bottom of Coleen's obituary were very touching to our family. You are amazing that you would even consider such a thought when you just lost your wife, we were moved to tears, and continue to pray for your family as well. Sorry I can't come up with the words right now to express how we feel.

Second I need to make a few corrections from our last blog, its good that we keep hearing the same things just a little differently so it sinks in and makes sense. I did not really lie, I mis understood certain informaiton such as the 6 kids on the list!!! there are 6 kids just from this center waiting for a liver transplant, there are over 100,000 people and the list nation wide. Andrew does need a pediatric liver transplant, but he could receive a portion from an adult in a live donor transplant. I'm not sure what else I need to correct I forgot to review my last entry before I began this one. I read it and make any corrections later.

Thirdly you have probably noticed the pictures of us with BYU players--- the story goes our wonderful neighbors Steve and Cherri Osguthorpe made arrangements for Andrew to meet the team. Steve used to play for BYU back when TY Detmer was the QB.
So Steve has lots of connections, and surprised us all with a trip to provo to meet the team last thursday after practice. It was wonderful we all enjoyed it but I think Dan was in 7th heaven and Andrew is an even bigger BYU fan now. Last Thursday we were able to watch the team finish their practice, then they called Andrew up front with them and sang to him and gave him a bag full of BYU stuff, a flag and a football of course signed by everyone and posters etc... Andrew then was able to visit with coach Bronco Mendenhall and QB coach Brandon Doman and the other coaches but I can't remember their names, sorry!!! then he threw a few footballs around with QB Max Hall and Kurt McEuen and had pictures taken with them and Max even let him try on his helmet. Then the guys got to go into the locker room with the team while we girls waited outside, only to be informed by Andrew that the reason girls can't go in is that they shower then put on boxers and play ping pong while they dry off!!! Steve was also able to get tickets to sit in a box at Saturday's game, so Andrew, Dan, Spencer, Steve, Colton, and Gunner went and had a great time, came home bragging about how great the box was and all the food they got to eat, then the Athletic Director Tom Holmoe and Associate Director Brian Santiago who are great friends with Steve, came and got Andrew and let him go in to the locker room with the guys after the game to celebrate, for a few minutes. Thank you to the BYU team and and to the coaches and to Tom Holmoe for allowing us to come and to Steve for arranging this all together. I don't even have enough words to express our gratitude and for how much fun Andrew had, and what this means to our family. We love you all. Andrew says he thought it was good and neat to meet the team and coaches. Several days later Andrew and I were home and the phone rings and its none other than TY Detmer wishing Andrew a get well soon. Andrew says that he thought that was cool to hear from Ty. (Ty and Steve were roomates at BYU-- thanks once again Steve).

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

October 4, 2007

well I guess it has been a few days since our last update. Life has been a little crazy at our house, lots of hussel and bussel and its not even Christmas. Andrew is doing great so we have planned on him going to school wednesday, today and tomorrow but he seems to be so groggy until 10:00. He used to be up by 6;30 and getting everyone else up but when I wake him up early he has a really hard time coming around. thanks to the neutrgen shot he is doing great and his counts are up and great. So back to the school thing---- we will be going tomorrow to see his teacher get a pie thrown into his face. RMMS has been having a fund raiser for Andrew and we are so greatful to everyone and everychild that attends this wonderful school. the fundraiser went as folllows all children who wanted to participate brought money to put into the teachers can that they wanted to see have a pie thrown into their face, I'm not sure who won but I guess we will find out tomorrow. Now school will be another couple of weeks, before he can attend (we hope). We go back to Primary Children's on Monday for a few days for a second round of chemo. I expect it to go well after going through it once I kinda know what to expect I think. The doctor and I spoke today going over his blood test and making sure we had a room on Monday and was answering all of my questions and let me know that the 2nd time around is good but recovery could be a little slower, but since this is Andrew's first time it could go well also. One never knows. Andrew lost his hair today, we cried. Sarah and I came home after attendeing Shelbie's funeral to have Andrew walk up to me and
say mom look and he could pull his hair out, he shook his head and it fell out so I said DON'T lets get it shaved, I don't want it all over the house. So he called his dad to take him because I would cry, (probably true). On the side of good news we
finally found Alyssa a car, she is excited and then some, and it was right in her price range, another blessing from the Lord I say. Well on that note we end for today, because the kids seem to be starving or so they say. Our thoughts our with Shelbie's family and friends, with the Johansen family and the Norlin family. I hope each of you feel our love for you, it is all of your love that keeps everything going. We love the letters and notes that come in the mail, your thoughts and prayers, to our wonderful relatives we love you. You had all better be careful you are becoming as the people in the city of Enoch, to perfect with Christ like love, and you will all be taken right up into heaven. Don't get to perfect I need you all here with me. B

October 1, 2007

Andrew has been very ornery! Our home health nurse let me know that it is his frustration coming out and it comes out at those he is closest to. He seems good and feels pretty good right now. It is hard for him to have to stay in and not go out and play and go to school. We hope that his white count is higher this week, so he can get out more and maybe go to school for a day. The count has to be high enough to get his second treatment. Again we are grateful for all of the love and kindness that everyone continues to show our family. Thanks for all of the calls and visits and wishes from friends and family. We love you all!! Our Children are thankful for all of the toys that have been given to Andrew, they are enjoying them as well. I am working to try to get some things accomplished so we will be ready to go into the hospital again on October 8, 2007. Sarah and Spencer had a great time going to their first dance. They were in the same group together. I am glad they get along, it made it fun. Alyssa was home for the weekend and it was so fun to spend time with her! She is the one to thank for the new pictures on this site.
Our thoughts and prayers are with the Johanson and the Macafee families while they are going through their hard times. The Johanson family with Colleen and her continued struggle with a brain tumor and the Macafee family with the loss of their daughter.

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