Saturday, March 29, 2008

The Days Roll On

This has been a bad week. Joshua tried to go to church on Easter Sunday and was so weak that he couldn't sit up for class. I had a prompting to check on him and found him about to collapse. I carried him to the couch and the effort made him throw up. However being Josh he did not want to go home and ended up sleeping on the couch in the foyer during church. After that he just kept getting weaker and weaker. He has now lost 12 pounds and has no energy. On Tuesday we went to the clinic for fluids and then on Thursday they decided he needed to be on an IV all the time. They are giving him fluids with a little potassium continually now. It has helped some, he is more alert and has eaten a few bites too. However today his teacher came to give him a test and just that short time wore him out and he is sleeping as I write. We have brought a matteress down to the family room because he wants to be where the family is. That way in the day time he can sleep or relax with everybody there. He sleeps in our room at night so we can help him. The fluids make him have to go in the night and he can't go by himself with all those tubes and the backpack. We set up another bed there. So now Josh has 3 beds and just takes his pick.

I have to offer special thanks to the girls in my church. They came over yesterday and cleaned the house. It takes all our energy to get Josh to appointments and do the basic nessesities around the house. We have been working on a garden in the front yard to plant roses in. I thought it would be great if Josh picked his own bush and then when he is doing his chemo this summer he can watch it bloom. I probably should have been cleaning not working on flowers but we need things to look forward to and get excited about. Also the kids don't get out enough and I see signs of cabin fever! It is good to listen to them yell and see them running up and down. We are truly grateful that we have such good friends to help us during this hard time. We hope all is well with your families. God Bless You

Saturday, March 22, 2008

Hair Today, Gone Tomorrow

Well, it has been a rough week. We started out ok but it went downhill fast. Joshua started to lose his hair on about Tuesday and by today it is all gone but some fuzz. I think he looks fine but he is very depressed about it. He doesn't like looking different and thinks everyone is looking at him. They changed the procedure for his radiation on Thursday and even though the new way is a little easier he didn't want to do it and got really stressed out. Also he is just not eating any more. We have tempted him with everything he likes and wants but he just doesn't want to eat. Everything tastes different and nothing is appetizing. If he eats the equivalent of 1 piece of bread a day it is alot. Also he is very tired and that makes eating a chore. Believe it or not, that is not the bad news. He is losing his speech to some degree. He slurs and you have to ask him to repeat what he is saying sometimes 3 times to figure it out. It is not all the time but alot. The oncologist says she thinks it is a toxicity to the chemo but they will do nothing till more symptoms appear. She says if he gets to the point where he can't feel his fingers they will lower the dosage. The other possiblity is that this is from damage to the brain stem from radiation. Either way, we will have to wait and see if he gets better or worse.

We are doing ok, just sad to see him so down right now. We take hope in the fact that he is at the half way point in the radiation and we will have a break when it is over. He is still fighting and reading his scriptures every day. Gordon read him the part about how "not a hair of his head will be lost in the ressurection" and that it will all be ok. He was able to make and race a car in the pine wood derby and did fairly well! He did all the work himself with just us telling him how so I am very proud of him. I hope you enjoy the pictures of the progression of hair loss, that is Uncle Darrell in the first shot.

Saturday, March 15, 2008

Something to cheer about!

We have big news here! The pups have arrived.
Please notice the little blonde girl on the right of those big boys!

Is that a face to die for?

This is our big pig boys.

This little girl is the reason I have not been sleeping.

Now onto news about Joshua! He has had a great week! We got new medicine and he hasn't thrown up all week! He has a terrible sore throat from the treatment but he is handling it ( and eating a lot of popsicles!) We are working on school work and trying to get into a schedule. I know that things can change quickly but I feel for the first time we are going to handle this. I hope that everyone is doing as great as we are, you are in our prayers.

Sunday, March 9, 2008

Updates and Answers

Ok, things are still rough. Joshua has eaten about one days food all week. However we are at least getting used to it. He carries a bowl for the obvious reason and we just hold him when he is sick. NOW- to respond to all your wonderful suggestions and ideas. Yes, we have elevated his bed on one end, we are working with the doctors on different medicines to help and diets options. No, Ensure is not helpful, he can't keep it down. Everything tastes different now so he doesn't like much. We do have anti nausea medicines and anacides, and mirolax to help him run smooth. One problem we have is that he doesn't like the medicine and so it is a fight to get him to take them which makes everything harder. Yes we are using the best options for meds, disolvable. liquids make him sick and he can't get the pills down.

I want to make sure you know how wonderful he is in the middle of all this suffering. The kids all had an activity at church on Saturday and he was feeling bad. When I was getting the others ready to go with their ride( a wonderful friend that took them) he appeared dressed and ready and announced that he didn't want to miss it. He knew they would be making and eating cookies at the end and he could't have them but he didn't care, he knew it was important for him to go. He paid the price and was exhausted after and got sick last night. This morning he insisted on going to church too. I see him taking time to be kind to his brother and sisters even when he doesn't feel good. I know that I would be very grumpy if I was in his place but he is not.

As always, I am heartbroken for his suffering. It is hard to be so helpless to make things better for him. I would give anything to take this from him but I am learning to follow his example. We take one day at a time and try to get through it. We are so greatful for the many hands that lift us up. The rides for the kids, meals that show up unasked for, kinds words and phone calls. I hope that you will all be blessed now and that you will continue to pray for us. We are going prayer by prayer, blessing by blessing. Thank you.

Wednesday, March 5, 2008

A Rough Start

Well, I don't think we could have gotten off to a worse start! Josh had a bad experience on the first day and what we thought would be a 15 minute appointment was 2 hours. They wanted to take a bunch of xrays and spooked him and then we had to fight to get it done. I thought it would be a great reward to give him an icee after (he loves them) To my great saddness, he started throwing up about an hour after treatment and it got so bad we had to go to the emergency room. For 5 hours he threw up every fifteen minutes. It was so bad he couldn't breath when he was sick and finally fell asleep exhausted. They gave him medicine but it didn't make much of a difference, just sleep helped. Yesterday we talked to the doctor and she said his brain is swelling and that if he got sick after treatment again he would be on steroids. He seemed fine after treatment yesterday and had a snack when we got home ( a little one). Of course we gave him anti nausea medicine before treatment to help that. However at 6pm he had fallen asleep and we couldn't get him to wake up. He slept till 2 am and then had a sip of water and fell back asleep. This morning he woke up and wanted breakfast right away. This seemed like a good idea cause he wasn't sick yesterday morning but turned out to be a fatal mistake. He got 2 bites down and was sick immediately. We called the doctor and she confirmed that this means he has swelling in his brain. She said if you sleep laying down you get extra fluid in your brain and with the swelling if you eat before you have sat up for a while the combination of fluid and swelling will cause you to be sick. Gordon ran to the pharmacy and picked up the steroids and we have just taken them. He has been sitting up for a while and seems to be keeping the medicine down( fingers crossed) Hopefully the combination of the anti nausea and steroids will get us through this time but it is rough for Josh.

This is hard for me, I just don't know what I am doing. I seem to be doing everything wrong and he is suffering. No one tells you about all these little potholes so you can avoid them. Also, we had hoped that he would tolerate this treatment well but he seems to be having every possible side effect and that is disheartening. Brain swelling, nausea, and he is exhausted in the first week. ( I do know that the tiredness is from the throwing up and lack of food) I keep telling him it will get better and that we can't stop but I feel like I am lieing to him and torturing him everyday. I am sorry this is not more happy and encouraging but this is all I have today. I hope you are all doing better than us and I am still asking for prayers, we sure need them!!!!