Thursday, November 29, 2007

Do You Hear What I Hear?

Well there is lots to say tonight. Let me focus on the medical news and then we will talk about the rest. We went for a test today on balance and hearing. The good news...He can hear fine. The bad news....He has 33%vestibular weakness on the left. He also has balance dysfunction under most sensory conditions. Who wants to hear that in English? That means he has a tumor. Actually what it means is that he does have symptoms from his tumor. What is making this so hard is that he is so young he is actually adjusting to all these problems and we are not seeing them. He has significant balance loss and eyes problems and while his hearing is good the hearing nerve is affected.
What affect this will have on our treatment is unsure. In the mean time we decided to start looking for answers. We asked Dr. Treves where to look and then did our research and ended up at Texas Childrens Hospital. We have sent the films and all the doctors reports there and we will hear soon what they think. If they know what this tumor is we will have to go to Texas. I can't believe I just said that. Every thing is so unreal now. You see movies or hear stories of families that go through this and when it is happening to you it is like you are watching the movie again. I feel like I am in the eye of a hurricane. It is calm and quiet now but raging all around us. Please pray that the doctors can find the right answers. Pray that we will know what to do and where to go. We need to be led so that when we enter the storm we will not be swept away. I hear what the doctors have said, I wait to hear what they will say, but mostly I hear what they do not say. Today we got more information that may be speaking to us as well. We appreciate your prayers and thoughts and we wait to hear good news.

Monday, November 26, 2007

New News?

Ok, they say no new news is good news but I am not sure about that. We met the Neuro-surgeon today and don't have much new to say. He is not sure what the mass in his brain is. He said it could be several kinds of tumors or even a malformation of his brain (that is a small possibility). He wants to meet with a group of doctors and have everyone review it for their opinions. He said that will take a week to 10 days and he will call us. He feels that because Josh doesn't have symtoms that we can wait and gather more information to make our decision with. The surgery will be risky, there is the possiblity of facial paralasys, deafness, and motor or balance loss. The tumor is in the left side of his cerabellum but up against his brain stem which is on the inside so they will have to pass through the nerves to reach it.
Before you say it, the fact that he is checking with other doctors is good, and I am glad he doesn't have symtoms. That doesn't make me feel any better. I want someone to say, "oh, I have seen this...This will fix it" not "boy is this unusual, I will have to see". I am not good at waiting and this is the worse. Every time he bumps into a table or the wall, everytime he doesn't feel good I wonder. I don't want to wait till this thing presses on his brain stem and he can't breath or it squeezes a nerve and he goes deaf to figure it out. This is my baby and I want him whole and well.
Now that I have the whining out of the way, let me continue. The spinal surgery is a little more routine. While it is still delicate he does this one at least once a month. We are going to try to get this out of the way over christmas. We need a bladder study done first and we have to see if it can all be scheduled. But if we can do it over the holidays that would be the best because Gordon will be home. Also, if we get more information about the tumor and need to proceed quickly this will not be hanging over us complicating things. He will still need physical therapy and probably braces to retrain his muscles but at least we will be moving forward and by his birthday he will be walking normally. We will know more about the definate date in about a week (sound familiar).
Well, I have not said much you didn't already know but you do know as much as I do........Thanks for all the prayers and offers of help. Keep praying and we will wait for news. The one thing I know for sure is that we are blessed to have all of you on our side and helping out. Thanks for all you do........Ruth

Thursday, November 22, 2007


Ok, this one is to finish catching up! There is no new news but I want to add a few things. First it doesn't matter if everything is going to be ok, the world will never be the same and for today I am devestated. How could this happen to my sweet boy? Why would my child have to endure all this. I will never believe that everything will be alright again, I know that bad things do happen and we can't go through our lives thinking it happens to other people. It is hard to accept that we have no control and just have to wait and see.
Now that I have said that, I want to answer my own question. God has a plan, I do not understand it and may not even like it today, but it is his plan and I have to accept it. I also have to let go of what I can't change and see the blessings. I can not explain how much it means to talk to a friend now or know that people are praying for us. I have a testimony that Heavenly Father loves us. When we lost our little girl Micah I thought the world stopped but it didn't. And in the 10 years since our lives have unfolded in a miraculous way. We have been brought here to Nebraska for Joshua, and we were led to buy a house with the most incredible neighbors. We have wonderful friends and church support. The children go to a great school with good teachers and staff to help. I could not endure this without that and Heavenly Father knew it. He can't change what has to happen but he never leaves us and always finds a way to support us as it unfolds. Our trials are big but our blessings are bigger...Thank you all for being instruments in his hands and being the life line in our lives.................


The weekend was surreal, it was so wonderful to have Gordon home but again I feel like I am standing still. I was nervous about going to church. I just didn't know how it would be, part of me has to keep telling people, it makes it real and I am more able to accept it. But I didn't know if I was going to keep it together either. We told Josh yesterday cause we didn't know if we would be able to keep it from him and wanted to be able to answer his questions. He was Joshua to a T! We told him about the tethered cords and he was excited that the fix would be permanent and he would walk normally. Then we said they found something in his brain. He looked at us jokingly and said "is it a tumor". I said yes it was and he was shocked. He said" I was just kidding" and I said "well, I am not" He asked if it was cancer and we told him we don't know but don't think so and then he was fine with it. We emphasized that we feel strongly that Heavenly Father brought us to Nebraska so we could find this tumor and fix it and that we are being very blessed, he is healthy and strong and it will all be ok. After that he went off to play and didn't seem the least worried. At church he asked if he could tell his class his "news". He then told them he had tethered cords and a tumor in his brain. They were shocked but didn't say much. I had to call all the moms that night and apoligize for not warning them so they could talk to their kids. I never thought he would just tell everyone, he is definately my son! Everyone is very supportive and offering to help. We will be ok,,,,,I hope. Today I am working on calling all of his old doctors and getting medical records so we will have more information. At least I am doing something. Just waiting for the next appointment is terrible. I did go to the school this morning and tell his teacher and the counselor. They are going to talk to his class, a little girl just passed away from brain cancer and they don't want any other children to be frightened.
I am getting there but this this still behind, this is from Monday the 19th of November........


I waited until noon today for the phone to ring. I woke up crying and could not stop for almost an hour. I am so frightened, I don't know anything and I am so afraid of losing my little one. Gordon isn't home yet and this is more than I can take. Finally I called the doctors office and found out he is in his car on the way out of town. I begged them to have someone call, I can't wait until Monday or after Thanksgiving. It is like a weight on my chest and I can't breath. They called him and he said he would call later in the day so I am still waiting.
Now Gordon has called and his plane is delayed, more waiting. I got off the phone and cryed again, what if he can't get here? I know that is silly but I am really freaked out.
Ok, Gordon is on the plane and the doctor called. I had a hard time hearing him, the phone kept cutting out but we got through the conversation. Basicly I don't know much more now than before! He has a tumor in his Cerabellum, that is in the back of his brain and a small area. In a child his size the area is about 5-6 centimeters and the tumor is 3 centimeters. The doctor is shocked at the size and can not believe he does not have symtoms. He kept asking if he was deaf or at least on the left side. He thought that by now he should be falling down or running into things. The tumor does not appear cancerous but he would not say for sure because it is so large. The radiologist had labeled it a Schwannoma but the doctor said that is wrong, it is too big and you don't see them in children Josh's age. We will just have to wait till it comes out to see what it is. We are meeting him on the 26 and then we will have some answers, I hope. All I know for sure is he has to have brain surgery and spinal surgery for his tethered cords. I don't really know anything about that one, just that the problem can affect his bladder and must be corrected. Well, this was long but that is how the day feels. Gordon is in the sky and Josh has Pack meeting (cub scouts) and I can't think of what I should be doing. Our wonderful friends are already stepping up and Sister Call is bringing dinner.
This actually occured on Friday the 16th of November. Still catching up....................

Tuesday, November 20, 2007

Big News

Today started out normal but ended up.......... We took Josh for an MRI to see if he CP. I had been told by a doctor in Arizona that he did but it was mild. They seemed to take forever to do the test and then they kept making us wait to leave. The whole time I was oblivious and didn't suspect trouble. When they asked me to come to a phone to talk to the doctor I could not comprehend what she said. She told me Josh has a tethered spinal cord and then she said he had a tumor in his brain. After I hung up I called my husband and then got ready to leave. The nurse stopped me and said I was taking it well but the truth was I still didn't get it. It took about 4 times of telling people before I realized what I was saying and then it took my breath away and I just wept. The whole world has just stopped and I can't seem to get my footing. It is like everyone is moving and they don't see me standing there. I just don't know what to do. There are so many questions and no answers. We are waiting to hear from a Neuro - Surgeon and all we know for sure is that he will need surgery on his spine and brain.
This actually occured on Thursday the 15 of November, I am just catching this up.