Something Old Something New - I am Blue

Well the surgery date changed. The good news is that this is for sure - we have an operating room booked. The bad news is that the date is Febuary 5th. I hate waiting so long but that is the first opening available. We have to be at the hospital at 10am and the surgery is at noon. I hate waiting so long but it is what it is. This also means that Gordon is going back to Arizona on the 3rd and staying till the 31st so he can finish one more class. When he comes home he will have 2 classes and a paper left to do. It is good he can get it done but I am pretty bummed out. My hopes of only 2 more weeks has now turned into 5. It seems like everything is out of my hands, I am just along for the ride. I worry about Joshua and Gordon but there is nothing I can do, just wait for things to happen. OK- I am done feeling sorry for myself- we can move on. Lots of people have asked what they can do and several have offered to come out. I am now making a schedule for the weeks of the hospital stay and after. If you are one of those offering please let me know and I will schedule you. I expect to be at the hospital for about 10 days but my mom and sisters will be here for that time. We really appreciate all the support, I just don't know how we would be getting through this without it. Josh is doing well, and while I watch him like a hawk, I try not to let him notice. He is happy and I will have to follow his lead.

In a few days the new year will be here. I am hopeful and praying for a great year to come and praying that yours is good too. God Bless you

All I Want For Christmas Is -- Surgery?

Ok, we met with the doctor today and it was very good. He answered our questions and we feel good about letting him do the surgery. We will confirm it on Wednesday but it looks like surgery will be on Tuesday January 29th. The doctor is hopeful that we are looking at a low grade tumor. What that means is that all tumors are rated 1-4 and a 1 is the best you can get. If it is a 1 and they can get most of it out he stands a good chance. If it is a 2 his chances will depend on how much they can remove. A 3 or 4 gives a very bad outlook. On the day of surgery they will send a sample to the lab and the lab will give there "opinion" about the tumor type. A full diagnosis with grading of the tumor will take a week from the date of surgery. After surgery Josh will be in the ICU for a day or two. The biggest concern at that point will be if he can swallow and breath on his own. The tumor is located right at the 9-12 cranial nerves and they control that function. If they are disturbed they may swell and he would lose function till they returned to normal. If that happened they would have to keep him intubated until function returned. After they have him stablized he will move from ICU to the floor and stay in the hospital for another 5-7 days. Once he is stable they will do another MRI to see if any tumor was missed or left behind. SO-- now we wait for surgery, then we wait for another week to get the grade. We are asking that everybody pray for surgery to go well and for a grade 1. We are also just trying to spend as much happy time as possible. So many people have been good to us, gifts and cards and calls and prayers. Please keep praying and I will keep you posted on anything that happens. Merry Christmas

The Warrior

Everyone keeps asking how Josh is taking all this. I thought I would update everyone on his progress. I am proud to say he is just Josh, takes everything in stride. We talked about what he might be worried about. I answered his questions and we talked a little about dying. I told him he is a warrior. Only special children get chosen for these trials. We told him that Jesus Christ stands beside him and that it doesn't matter what happens. If he lives he will touch many lives with his spirit and if something happens to him it is because he has another mission. He let me read his journal later and he wrote that he was "freaked out" but now he is ok with it. He likes knowing that this is not random and that there is a plan. Also, when you are 8 being a "warrior" is cool! Gordon and I are of course having a harder time with this all but we do feel that we are being guided and knowing that this is Heavenly Fathers will does make it a little easier to accept. Our families are making a huge difference with their support. It is overwelming how many people care about Josh and our family. We meet with the doctor on christmas eve and will set the date for surgery then. For now we are just trying to make everything normal. Josh is in school and doing homework. Thanks for all you have done you make a difference with your calls and prayers........

Cancer

We are back from Texas and not with good news. The doctors there confirmed what Dr. Treves suspected, this is an Ependymoma. The tumor is lying on the floor of the fourth ventrical of the brain stem. It is below the 7th and 8th nerve. That pretty much rules out the shwannoma and makes the Ependymoma the answer. What this means is that it is now critical to get it out. However we will not be able to remove it all due to the fact that it is attached to the brain stem. So,,,,,,,,,after the surgery we will have chemo and possibly radiation. The hard news to tell you is that this is the tumor that carries the highest rate of regrowth in children. I do not have a lot of information about the chemo, I will have to meet an oncologist to find out more. We do know more about the surgery. It will take at least 6 hours and then 24 to 48 in the ICU to see if he can breath on his own. After that he will be in the hospital for about 7 days to rehabilitate. The surgery will leave him dizzy and unbalanced and he will have to learn to walk and stand again. If all goes well that will go away and then when he is home we can start the chemotherapy. I want to tell you that we are still hopeful but I want you to understand how serious this has become. We will go day by day, procedure by procedure and blessing by blessing from now on. Thanks for all you do. We will be adding more posts as we get schedules and information...........Your prayers are our greatest strength.......

Aunt Collette's Wedding

Some great pics from Aunt Collette's wedding.

Are We There Yet?

We are counting down the hours to Texas. I am very hopeful they will have answers there. Things get more confusing here every day. We still do not know if insurance will cover the visit there yet. Also, we are not sure about the doctors here. Dr. Treves told me he looked at the films everyday for a week and told me we needed to get a new MRI with contrast dye before the trip, he felt it would help the doctors make the diagnosis. Then we had problems getting it scheduled here, Children's said they couldn't do it before we left. After 2 days of phone calls trying to figure it out Dr. Treves office called to say the contrast was done on the original MRI. I guess a week of looking at the films wasn't enough time to notice it was there. I don't know how this affects Dr. Treves diagnosis I only heard from a nurse. I really want answers. At first we thought that Josh had no symptoms but everyday I find out that there are more symptoms. He has headaches, and balance issues, and yesterday I saw him sitting with his left leg jumping and he was hitting it and I thought he was joking around but apparently it does that and the only way he can get it to stop is to hit it. He thought that was normal and never thought to tell me about it. I just don't know how many more surprises I can take. I am getting further and further behind on my everyday chores, I just can't concentrate on them. Luckly I was a good mom and taught my little ones to fold laundry and put away toys. They are clean and dressed and we are not tripping on too many toys. The rest just doesn't matter right now. It has begun to snow here and we had 4 inches yesterday. I am glad that even though this is rough for me all the children wanted was to roll in the snow and throw it at the beagles. They are happy and enjoying the season. I have been putting decorations up in every corner to make sure they have a good time. We will have to see what next week brings but I am hoping for my christmas gift early..............Thanks for all you do.

Here atoma, There atoma

First I want to say thank you to everyone who has prayed and fasted on Joshua's behalf! We have felt that love and promise and are so greatful for the support. Today we were busy, we started with the Orthopedic doctor and she wants him to wear braces. It can take several weeks to get them because they must be hand made in a prothetics lab and just the measuring can be a wait but when I called for the appointment they told me someone had just called to cancel and they had us come right over. They will still take two weeks to get but that is better than a month. We are now working with our primary care physician to try and navigate the maze of insurance and get everything covered as we move forward. Finally we talked to Dr. Treves tonight. He says that he has been looking at the tumor and even went over to the hospital to view the original films. He has presented it to 5 doctors and they have compiled a list of 4 top picks for what this is. It could be a Shwannoma, a Ependymoma, a heymartoma(I couldn't get that spelled right), or a Meningioma. It could also be neurophytonoma(again with the spelling) or a Oligodendroglioma. Dr. Treves is on board with our trip to Texas and has ordered another MRI before we go. This one will be with contrast dye and very important. He says that how much dye the tumor takes on will help make the decision on how soon it has to come out and which atoma it really is. He said that he knew they would want it so lets get it done. We are also waiting on the bladder study on the 11th to decide about the spinal surgery. Sooooooo by the time we get home from Texas we are hoping to have a plan. If the tumor needs to wait we will try to do the spinal surgery over christmas. Other wise the tumor will come first but we need to know which atoma it is to decide when. Ok, to recap we have an MRI with contrast this week, a bladder study on the 11th, and head to Texas on the 12th for an appointment on the 13th. We will be home that night and try to get a post in right away. I would like to tell you how I feel about all this but I am numb. The maze of doctors, insurance rules, and words I can't even pronounce is overwelming. We are excited that in 10 days we might see some light at the end of this tunnel. But we are most excited about you. Your support and love helps everyday.........Thank you.................

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.

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

Blessings

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.................

Monday

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........

Waiting

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....................

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.