Friday, December 28, 2007

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

Monday, December 24, 2007

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

Monday, December 17, 2007

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........

Thursday, December 13, 2007


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.

Friday, December 7, 2007

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.

Monday, December 3, 2007

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