Sunday, May 25, 2008

Wolves and Accidents

We have made it through the first round! We had our last outpatient chemo on Friday and now we have 3 weeks to rest before we start again. Joshua is doing great, I am very hopeful judging from this cycle that we can get this done. In typical Joshua fashion he has continued his scout work and on Friday night he got his Wolf at pack meeting. He is already heading down the arrow point trail and working as a Bear now.

I could not resist adding a few pictures this time too. The first is obviously, Josh getting his Wolf. It is not a good close up of me so I thought I would add one of those as well. For anyone who has not heard the story, I was mowing the lawn and tried to move the yard waste can. I tripped on the lid and fell into it. The doctor thinks I fractured my orbital bone but there is nothing to do for it but let it heal and make as many jokes as I can think of. ( I got canned.....) I have been trying to get Gordon to feel sorry for me but he can't seem to stop laughing long enough! Hopefully this will get some sympathy. However, I know that anyone who knows me will know that I am accident prone and not be too alarmed or concerned, while I tend to get into trouble I always seem to recover just as fast. Anyway, Josh is doing well and that is our measure of happiness. We hope all your families are well and please know we pray for you. Remember, no matter what slows you down we should all follow Joshua's example and keep working for our goals. Awooooooo ( Wolf howl)

Sunday, May 18, 2008

Progress and Graduation

We are estatic! Josh is doing so well. He is not even on anti nausea medicine right now and his counts are good. (that means he has enough white blood cells to fight any infection that might come around.) He got to go camping with his dad and Teddy and his Uncle Justin. For those of you who may not know, once a year our church has a campout for the boys and dads. It is just an over nighter but they love it and it is called Fathers and Sons. Needless to say it was very important for Joshua, he has missed so much now. I was very worried about how tired he would get but he did just fine and is only a little tired today. I talked to the nurse and she said that it might get a little harder for him as time goes on but that this is a very good start to chemo.

Now, on to other great news! Gordon will finish his last class in June and we found out they have a graduation ceremony and he will walk on June 22nd. I could not be prouder of my husband. He has a degree but when he found he needed a secound, in accounting, he did not hesitate. He has gotten all A's except one B. To do that normally would be great, but he has done this during this hard time and never slowed down. He has worked into the night many times to get the assignment done and with all the other worries we have it is just amazing. Please pray for him to find a good job he has worked so hard for it and is so good at what he does. As always thanks for your prayers and you are always in ours.

Saturday, May 10, 2008

Round One

Well we are off to a bumpy start. The good news first. Joshua's MRI was clear. That means that is showed no evidence of tumor left behind or new growth. (there was an area after the surgery where they didn't know what it was, left over tumor or swelling) Also we got the first round of chemo and he did not have a reaction to the infusion. (that is when they administer it, sometimes kids get really sick or have breathing problems) He is also eating well right now.

Well let me tell you the whole story. We went to the clinic on Thursday for our appointment. We had the MRI and then they told us the doctor was busy and we got lunch and then hung out and waited. Finally the doctor called us back and told us that they couldn't start chemo because they needed a 24 hour urine collection and forgot to tell us about it. She said well you live close come back tomorrow. So we went home and collected through the night and were back at clinic on Friday at 11am( when they told us to be there) They seemed unprepared for us and it took more than an hour for them to just get the sample to the lab for analysis(urine). Then we had to wait for the results to get started. That meant that we did not get chemo till 6 pm! Yes you heard right, they got us checked in a room and started at 6. That meant that we did not get released till 6pm today.(Saturday) Joshua had his first piano recital at 2pm today. His teacher gets a room at the Joslyn art Museum with a concert grand piano to play on and he missed it. I can not tell you how discouraged he was. He worked so hard on his piece and was so excited. We work so hard to try and keep his spirits up and he crashes very hard. I am very disappointed in our doctors and staff because it was preventable and not one but several errors caused this. We are hopeful that he will keep feeling good so that he can start to be up again. This group of drugs can have a delayed reaction so we are holding our breath till Tuesday. If he can get to then without going downhill he will do great with this part of the protocol. Also a word of caution now. We are in that part of the treatment where his white count can be low so no one can come around if they are sick. Well we are excited about the good news and want to focus on that. I hope all your lives are filled with your own good news and we will pray for it to continue. As always, thank you so much for your love and support and as Saturday draws to a close and Sunday starts --- Happy Mothers Day to all you wonderful Mothers, your example paves the way for our efforts.

Sunday, May 4, 2008

This Is A Long One!

Well I haven't posted much during our break, I have been spending time with the children. We have worked in the gardens in the yard as much as possible. It has been fun and now my back aches and my knee is swollen! (I knelt on a brick) Josh has even gone to the Y to shoot baskets by himself a few times. (it is 3 blocks away and we pick him up when he is done cause he is tired) He is definately not as strong as he used to be but he is doing good. He has been going to school and riding his bike and having fun. That is why I should not feel the way I do. I am so worried about this week. Let me give you the schedule and then I will talk about it.

We have 3 doctors apointments on Wednesday. We have the hearing test and I do expect him to have hearing loss. He now panics if he is in a small place and people are loud. I think that the sound echoes and it is frightening to him. We also have a follow up with the radiation oncologist to see how he is doing. The other appointment is one I am not sure about. When all this started the orthopedic doctor he was seeing wanted him in braces to help his walking till they could do the spine surgery. The insurance denied it cause of his prognosis. Unknown to us the doctors appealed it and now they have approved the braces. We will get them on Wednesday. I am just not sure if this is too much to ask him to deal with. He wants them because they come with custom fit scetures(boy I spelled that wrong) sneakers. We decided to get them and see how it goes. He still gets tired easily so I just don't know.

That brings us to Thursday! We go into the hospital at 9:30 and they start an IV with his port so that they can use contrast during his MRI at 10:00 Then we go to the clinic and start chemo. They will give him chemo and fluids through the IV overnight and then we are supposed to go home on Friday late in the afternoon. Other parents I have talked to say if you are throwing up or have diarhea or are not eating you do not get out. We will have to see. This is the first MRI since treatment started so we are nervous to see what it says. Also, the treatment so far has been very hard on Joshua and it was supposed to be the easy part. It takes all I have to make him do this and see it slowly drain him. Even though he has been doing great, that is relative. He is different and I know that we are making it happen. It is hard to be on this road and feel like we have no choice. Now, I know that I have a bad attitude, don't worry we are positive and upbeat with Joshua. It is just that I can't shake this dread. We are doing our best to be prepared and ready to handle this. I have tried to get my projects done so I can focus on Joshua. We have had lots of fun during this down time and I think he is ready for this. Please keep us in your prayers and we will hope for the best. I know that we could not get through this without all the wonderful support. We love the cards and letters and it means the world to us that so many people care about Josh and our family. Thank you so much.

With all my whining I do not want to end this post without saying that we know that Heavenly Father knows our struggles and wants to help. We feel that he is with us and Jesus Christ stands beside Joshua. This trial must happen but he doesn't leave us alone and we will get through it. Joshua is a warrior and we are fighting with him. God Bless you all, I know he has blessed us.