The Radiology Oncologist wants to do an MRI on Justin every three months, to monitor the growth in the tumor. He will do this every three months until he has an idea of the growth rate. Our next appointment will be in July. They will do the MRI and the appointment with the doctor on the same day. That will save us some drive time.
Tomorrow we are going to visit the camp where Justin has applied to work. The doctors have given him very few restrictions at this point. So we hope that it works out and he can work there for the summer or longer. He has lots of experience and would like to be involved with camp ministry. The last camps he worked at were in Pennsylvania and Michigan. This one is only 2 hours from home, so I will be more comfortable with that.
Friday, May 9, 2008
Thursday, May 8, 2008
Good News and Bad News
Well, we are back from the hospital. Most of what the doctor told us we already knew, but he made sure we understood and let us ask questions. Justin also got the staples out of his head (there were three). I am impressed with the doctor. He is very good at making his patients comfortable, informed, and cared for.
First, the good news. The endocrinologist has decided that since there was not cancer in Justin's thyroid, they will just do nothing for one year, unless his airway seems to be getting in the way of his breathing. That is good news.
The neutral news is that for the time being, they are also doing nothing with the vascular malformation. It has a 3% chance per year of having a bleed. The doctors think that is a chance they are willing to take. Because of this, he has been restricted from power lifting with weights or lifting very heavy things that change his blood pressure. No problem.
Then the bad news. It is something we have known, but he put some numbers with it this time. Justin has an oligodendroglioma. It is a tumor that is slow growing and non-aggressive at this point. The doctors and pathologists have given it a grade II of four grades. Grade IV is the worst. It is not curable, and it is not fully operable. (I asked Justin if I could write this and he said OK, as long as I don't try to milk it for sympathy!) So here goes...There is a bell curve to the survival rate of gliomas. It is not a tall and skinny bell curve that results in most people having the same symptomes at the same rate. Rather, it is a short and very wide curve, so it is impossible to guess an individual's survival rate. However, the average is 7 to 10 years, with some as soon as 2 years from diagnosis, and some that have a glioma that has not changed in 20 years. There does not seem to be an advantage to treating a glioma right away. The doctors in Iowa City will wait to treat the tumor once symptoms are needing to be dealt with. They will have choices, but will probably do radiation first, then chemo, then surgery, in that order.
I have been looking at information on Justin's type of tumor on the Internet. This article is a good one that makes it understandable. If you are interested, there are many web sites available regarding brain tumors. The biggest piece of advice I can give you is to remember that no doctor or scientist has control over a life. That is God's alone. So all these facts are what we think, not what God knows.
http://www.abta.org/siteFiles/SitePages/BE237E81490FDB6286AF83C71D912A42.pdf
We have hope that Justin will have a long and prosperous life. We believe in miracles and hope for one. However, we also place this in the hands of our loving and gracious God, who loves Justin even more than we do, and already knows the outcome.
First, the good news. The endocrinologist has decided that since there was not cancer in Justin's thyroid, they will just do nothing for one year, unless his airway seems to be getting in the way of his breathing. That is good news.
The neutral news is that for the time being, they are also doing nothing with the vascular malformation. It has a 3% chance per year of having a bleed. The doctors think that is a chance they are willing to take. Because of this, he has been restricted from power lifting with weights or lifting very heavy things that change his blood pressure. No problem.
Then the bad news. It is something we have known, but he put some numbers with it this time. Justin has an oligodendroglioma. It is a tumor that is slow growing and non-aggressive at this point. The doctors and pathologists have given it a grade II of four grades. Grade IV is the worst. It is not curable, and it is not fully operable. (I asked Justin if I could write this and he said OK, as long as I don't try to milk it for sympathy!) So here goes...There is a bell curve to the survival rate of gliomas. It is not a tall and skinny bell curve that results in most people having the same symptomes at the same rate. Rather, it is a short and very wide curve, so it is impossible to guess an individual's survival rate. However, the average is 7 to 10 years, with some as soon as 2 years from diagnosis, and some that have a glioma that has not changed in 20 years. There does not seem to be an advantage to treating a glioma right away. The doctors in Iowa City will wait to treat the tumor once symptoms are needing to be dealt with. They will have choices, but will probably do radiation first, then chemo, then surgery, in that order.
I have been looking at information on Justin's type of tumor on the Internet. This article is a good one that makes it understandable. If you are interested, there are many web sites available regarding brain tumors. The biggest piece of advice I can give you is to remember that no doctor or scientist has control over a life. That is God's alone. So all these facts are what we think, not what God knows.
http://www.abta.org/siteFiles/SitePages/BE237E81490FDB6286AF83C71D912A42.pdf
We have hope that Justin will have a long and prosperous life. We believe in miracles and hope for one. However, we also place this in the hands of our loving and gracious God, who loves Justin even more than we do, and already knows the outcome.
Wednesday, May 7, 2008
First Big Appointment
The radiology oncologist's office called a little while ago. The results are back from Justin's biopsy and testing, and they would like to see us tomorrow morning to discuss the results and treatment plan. It made me a little nervous at first that they wanted to see him right away. But I decided not to worry about it. We knew that they would call to tell us when our appointments were, we just had no clue that we would only have one day notice.
We shall have much more to report tomorrow evening.
We shall have much more to report tomorrow evening.
Tuesday, May 6, 2008
Numerous Reactions
Now that we are a week and a half past the initial shock of finding out about the tumor and the other issues, it is more normal for us to think about them as part of life. The shock has worn off and we are getting used to it. It has been quite interesting for the whole family to watch the reactions of others. Of course everyone was shocked, and of course they care. But sometimes the strong just fall apart, and the weak ones are strong. Crisis brings out the best and worst in people. But I want to say to all of you out there, we are thrilled to have you as our support network. Every single person that has seen or contacted Justin has been great! He has a secure knowlege that people care for him and are concerned for his health and happiness. So many prayers have been lifted to heaven on his behalf, we can't even start to keep track.
I was talking to my friend David this evening. I was explaining that I cannot understand how it works, but being prayed for this strongly is similar to being a tiny babe held in your mother's arms. You are so protected and drawn in to her, that you can't even flail your weak little arms. You are secure in the protection and love she has for you, so you can lay your head down and sleep, even in crisis. He teased, "this is Beth, on grace" (remember the commercial, "this is your brain, on crack"). He is so right. We are so protected by your prayers that it doesn't even seem like danger. We are safe. So two things, friends. Never stop praying. And never turn down a prayer from a friend. Prayer is the only reaction that counts.
I was talking to my friend David this evening. I was explaining that I cannot understand how it works, but being prayed for this strongly is similar to being a tiny babe held in your mother's arms. You are so protected and drawn in to her, that you can't even flail your weak little arms. You are secure in the protection and love she has for you, so you can lay your head down and sleep, even in crisis. He teased, "this is Beth, on grace" (remember the commercial, "this is your brain, on crack"). He is so right. We are so protected by your prayers that it doesn't even seem like danger. We are safe. So two things, friends. Never stop praying. And never turn down a prayer from a friend. Prayer is the only reaction that counts.
Monday, May 5, 2008
Monday
How things change from one week to another. I re-read the blog yesterday and can't believe how much happened in just a week.
Today I called the hospital to see if we could set up appointments for the doctors that Justin will have to see over the next few weeks. I was hoping I could set up a few on the same day, hopefully on Fridays. That works best at my job. Well, seems that when you have a cheif neurosurgeon for a doctor, you come when he says! He only sees patients on Tuesdays. OK, I'm fine with that. If I were a doctor, I would want some control over my schedule, too. I am afraid that the appointment schedules are going to be tough given that we are 130 miles from the hospital. Hopefully we can make a day of it, and make our trips more than just a doctor's appointment.
Justin is down to one medication now. Nice.
Today I called the hospital to see if we could set up appointments for the doctors that Justin will have to see over the next few weeks. I was hoping I could set up a few on the same day, hopefully on Fridays. That works best at my job. Well, seems that when you have a cheif neurosurgeon for a doctor, you come when he says! He only sees patients on Tuesdays. OK, I'm fine with that. If I were a doctor, I would want some control over my schedule, too. I am afraid that the appointment schedules are going to be tough given that we are 130 miles from the hospital. Hopefully we can make a day of it, and make our trips more than just a doctor's appointment.
Justin is down to one medication now. Nice.
Sunday, May 4, 2008
More Information
I got the feeling this morning at church that our friends have lots more questions than I have answered on this blog. So I will try to explain things a little better.
Justin was temporarily diagnosed with a low-grade glioma, which is a type of brain tumor. It begins in the brain, so it didn't start somewhere else and end up in the brain. It is not fully operable, but that is not a concern right now. We are waiting for confirmation from the biopsy that it is positively a low-grade glioma. They should know within a week.
I asked one of the doctors if he knew how long it had been there and he said, "this is like taking a picture of someone running on the beach. You have no idea where they came from or where they are going. All you have is a snapshot in time." The tumor is slow growing, but we have no idea if it has been there for 2 years or 20 years. Nor do we know what "slow growing" will mean in 1 year, 5 years, or 10 years.
There is no data to suggest that treating it right away has any value compared to waiting. Therefore, the doctors want to wait 2 months for another MRI to see if there is any change. As long as there is no change, no treatment will be done. They will continue monitoring it for life, I assume. If it changes, then the doctors will get more aggressive with the treatment. They can do chemo and/or radiation, as well as take some of the tumor with surgery. They don't want to do that because it is in the area of his brain that controls speech and emotions, so the risks are big. Since they can't get it all, they don't really want to get in there if they don't have to. They would only do it to relieve some pressure or something like that.
So now we wait. Because he has two other problems, we will be in Iowa City for appointments and treatments over the next few months. I will update often, even if there isn't much news. Keep praying! We have been greatly encouraged by the support and prayers of our friends and family.
Justin was temporarily diagnosed with a low-grade glioma, which is a type of brain tumor. It begins in the brain, so it didn't start somewhere else and end up in the brain. It is not fully operable, but that is not a concern right now. We are waiting for confirmation from the biopsy that it is positively a low-grade glioma. They should know within a week.
I asked one of the doctors if he knew how long it had been there and he said, "this is like taking a picture of someone running on the beach. You have no idea where they came from or where they are going. All you have is a snapshot in time." The tumor is slow growing, but we have no idea if it has been there for 2 years or 20 years. Nor do we know what "slow growing" will mean in 1 year, 5 years, or 10 years.
There is no data to suggest that treating it right away has any value compared to waiting. Therefore, the doctors want to wait 2 months for another MRI to see if there is any change. As long as there is no change, no treatment will be done. They will continue monitoring it for life, I assume. If it changes, then the doctors will get more aggressive with the treatment. They can do chemo and/or radiation, as well as take some of the tumor with surgery. They don't want to do that because it is in the area of his brain that controls speech and emotions, so the risks are big. Since they can't get it all, they don't really want to get in there if they don't have to. They would only do it to relieve some pressure or something like that.
So now we wait. Because he has two other problems, we will be in Iowa City for appointments and treatments over the next few months. I will update often, even if there isn't much news. Keep praying! We have been greatly encouraged by the support and prayers of our friends and family.
Saturday, May 3, 2008
Fitting The Pieces Back Together
Justin slept in, which is good. He got up early this morning and knocked on my door to make sure he had his meds right. He is tapering down on the steriod this weekend. By Monday morning he will just be on one medication. Praise God. They were giving him handfulls in the hospital.
Today is Tammy's birthday, so Jason bought a Cold Stone Creamery ice cream cake for her. Yum. As we were singing and laughing and having fun watching Tammy open gifts, the conversation turned toward Justin's week. Justin's memory shorted out last week. We were asking him about things we did and if he remembered. He just remembers snippets of the week. It was funny in a sad way. We all ate out last Friday night at Okoboji's with Hannah. Justin doesn't remember that at all. He turned down an ice cream cone on the way home and I remember thinking that was odd--he never turns down ice cream! It was the next morning that I found him in a seizure. Now it all is fitting together.
Our family has two blessings out of this. The first one is that we now know what to watch for "just in case", and secondly, we are so thankful that he doesn't remember most of the hard stuff. Lots of the things that were really hard the first few days are not even in his memory bank. I am OK with that.
Today is Tammy's birthday, so Jason bought a Cold Stone Creamery ice cream cake for her. Yum. As we were singing and laughing and having fun watching Tammy open gifts, the conversation turned toward Justin's week. Justin's memory shorted out last week. We were asking him about things we did and if he remembered. He just remembers snippets of the week. It was funny in a sad way. We all ate out last Friday night at Okoboji's with Hannah. Justin doesn't remember that at all. He turned down an ice cream cone on the way home and I remember thinking that was odd--he never turns down ice cream! It was the next morning that I found him in a seizure. Now it all is fitting together.
Our family has two blessings out of this. The first one is that we now know what to watch for "just in case", and secondly, we are so thankful that he doesn't remember most of the hard stuff. Lots of the things that were really hard the first few days are not even in his memory bank. I am OK with that.
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