Memorial Day

I emailed Justin this week to see how he is doing. He doesn't have cell phone service out in the country, so we have to use the computer. He said he is doing fine, although more tired than usual. The "hole in his head" from the brain biopsy is still soft, so when the staff did paint ball, Justin chose to help everyone else instead of participating. He is a little nervous about doing too much yet. I'm OK with that.

One more week of training, then camp begins. He is very excited.

Thanks to all of you who have shown concern for Justin the last few weeks. We appreciate it so much.

OK, OK, I Lied.

I said I would post over the weekend, but I couldn't wait. This afternoon I heard the news that Senator Ed Kennedy was diagnosed with a malignant brain tumor. I felt bad for him and his family. I have an inkling of what they are going through.

The tumor is in the same family as the one Justin has--a glioma. However, they called it malignant. That means he is in grade 3 or 4 of the disease. Because of his age and health, his prognosis isn't very good. I just heard on the news that he might have a year to live. They will treat the tumor as they can with radiation and chemo. Justin is in grade 2, which means it is slow growing. They don't call it malignant in grade 1 or 2 because it is not aggressive. He has his youth, his health, and time on his side. It may be years and years before a change of any kind.

I emailed Justin and told him that I have the whole long weekend off for Memorial Day, so if he was going to be alone, I could come up and visit, take him out to eat, go shopping for stuff he might need, or just hang out. There is some yard work to do at the farmhouse where he lives and I was thinking of working to make that look real sharp. I heard from him later in the day. He is so busy already, there is no time for a visit! I had to laugh. What a great way to get back into normal life--90 miles an hour. He has training and all sorts of things for the next two weeks before camp begins.

The camp is used for the first 3 weeks by the Catholics in the area. They bring up their own counselors with the kids, so Justin will be the 2nd counselor in his cabin. He will be the one that runs things, the other counselor will be there to manage the kids. Nice. These are little kids, so he will do great. He will have younger kids for the first three weeks, then they will be junior and senior highers later in the summer. He will be able to get his stamina back before the older kids get there.

It is so fun to watch the Hand of God at work.

Settled In

Justin got all settled in at the farmhouse where the male staff stay. He has his own room. The window opens up to a little stand of trees, then miles and miles and miles of beautiful farm country. The front of the house faces the camp, but is a city block away. The house has everything but a dishwasher. By the looks of it, the other staff that have moved in have everything a guy could want for weekends when the camp is empty. There's a tv, a boom box, lots of DVDs, music, video games and even the game "Guitar Hero". Justin liked the looks of all of it, but he had something else in mind when he packed; books. He laughed and teased about his ability to sleep with all that going on. I have a feeling he will adjust just fine.

As soon as we got to camp, he was warmly greeted by his boss and they got right to work. And that was that. He is right where he should be, wanted and needed and happy as can be. That made me feel good as I saw him in action. I know he is happy to finally be back to work in his chosen field.

I must admit that I felt a little sorry for myself on the way home. I will miss him more this time than any other time he has ever been away from home. Funny thing is, he is closer than he has ever been! But I gave myself permission to miss him extra--I'm his mom! It's OK for me to feel happy and sad at the same time.

I'll post again next weekend. Thanks to all of you for caring and praying. Keep it up, prayer is NEVER a waste of your time. I'll keep you informed as often as necessary. God bless all of you.

Ready For a Summer of Fun

As Justin was packing tonight, we watched the staff videos from one of the camps where he worked. They were really funny, and it motivated him to be ready for a summer of fun. He will know more in the next week what his jobs will be, so I will let you know as I find out.

Justin's health seems to be fine right now. He can still get a little winded when exercising, but that improves daily. He has no headaches, racing heart or pain. We are thankful and pleased. We don't know what the future holds, but we know Who holds the future.

Speaking of the future, I will post tomorrow night when I get home from taking Justin to camp. After that I will just post once a week unless there is a change in Justin's status. Stay tuned to keep up with what he is doing in his life. I'll also post in 7 weeks for his MRI and the results. Please don't stop praying!

Workin' Man

Justin will be going to camp to work on Sunday. He got the news today. So we are planning and packing and getting appointments for a haircut and all the stuff that has to be done before one goes off to the woods for a few months. Actually, the camp is really more in the fields than the woods, but you get the idea. He is really ready to go. This is what he does and he is ready to get back to work.

Tonight we saw Prince Caspian. Wow. We really liked it. The special effects were wonderful and the land of Narnia was so beautiful. I caught my breath during part of the movie. The scenery was incredible and it made me feel that I had seen something close to a glimpse of heaven. There is a lot of war in the movie; lots of action but not a lot of blood. It is darker than the first movie, but you know the characters better, so it naturally goes deeper. I think if you have never seen The Lion, the Witch and the Wardrobe, you should rent that and see it first. Otherwise you may not understand who the characters are.

Justin's favorite scene was with the griffins. You must see the movie to know what I am talking about. We don't want to ruin even a minute of the movie for you. It was awesome.

Mother's Day

Among other things, Justin gave me tickets to Prince Caspian for Mother's Day, so tomorrow I will be going with him as soon as I get off work. Justin is quite a movie buff (and I am not). I have to laugh because he gives me a play-by-play of the action, even if he has never seen the movie! Evidently there are only a few plot lines and he knows them all, plus the unforseen twists and turns. He will be watching a movie he has never seen and say, "now she is going to tell him to get lost" and of course, that happens. I love it when he says, "wow, I didn't see that coming..." I will probably not hear a word out of him during this movie! We enjoyed The Lion, the Witch and the Wardrobe and bought the DVD when it came out. Hopefully this one meets our expectations.

Thinking...But Not Too Much

It is so cliche to write almost anything here. I have written it, you have heard it; "I can't believe this is happening", "God has a plan", "everything will be fine", and on and on.

Life is the same so often. It is almost too simple. We learn about God, we have a crisis, we lean on God, we get through the crisis, so we learn more about God, we have a crisis, we lean more on God, we get through the crisis. There are circumstances in between, but there it is again. A lesson to be learned again and again. Justin has been through this many times, I have, you have. It is there, and we do it.

It doesn't matter if you have certain clothes, a special job, a great car, lots of money, a beautiful tan, the right friends, real estate, the great American dream. There will come a day when all that stuff takes a back seat to your crisis. I don't mean this to be depressing. I mean it to be my chance to tell you, "BE READY! Don't wait for a painful time in life to learn how to live with the hardships. Take time now to get to know the One that you can always rely on for help. He can, and will take you through it.

Justin is trusting, knowing that God will help him through whatever the future holds, the good, the bad, and everything in between. I am doing the same thing. This is the best part. God tells us to not worry about tomorrow, for today holds enough problems of it's own. That is comforting for me. So I can think about the future. But not too much.

Roomies

I wondered why I couldn't find a smaller place to live a few months ago. I looked and looked and didn't find anything that was even fit to live in. As usual, now it all makes sense. It seems that I will have Justin as a roommate any time he needs it from now on. We made it official tonight by signing a new lease, listing us both. This way he always has a place here, of course. But he will be out conquering his world for a while!

Soda Pop Free

This is a real record in our house. Justin has not had soda pop for three weeks! A few days before he really got sick, he quit drinking pop. He felt that his heart racing in the middle of the night was from caffiene, so he just went cold turkey. We later learned that it was probably either seizures or pressure from the tumor on his brain. During the time he would normally have caffiene headaches, he was in the hospital, so he missed all of those. I think he is glad to be off of it. Now he is drinking water, juice, and Gatorade. He was laughing because pop is $1.50 a can at camp-he said you'd have to want it pretty bad to pay that! Fortunately, non-soda drinks will be plentiful at camp, so he will be able to stay off of it. Good. I stopped drinking soda when Justin was in 4th grade and haven't missed it. Well, once a year I really get a craving for an A&W root beer, but that goes away. Good for you, Justin.

Humor in the Hard Times

Justin has an incredible sense of humor. It has been a blessing to watch his humor at work during this time in his life. To be able to laugh in the face of adversity is a gift. It didn't take long after learning about the tumor for Justin to see the funny side of things. Laughing is a healthy thing, and it is good if you can laugh every day. I don't think Justin will have a problem with that!

Work Day at Camp

Today Justin and I went to visit the camp where he applied to work for the summer. They were having their annual work day, so we pitched in. There were lots of jobs for everyone and everyone helped, even the little kids. It was a blessing to see the results of the whole team working together, and fun to see the happiness on the faces of those who work at the camp already. You could see that they were thrilled with all the jobs that were getting done. I was thinking about the kids coming to camp in a few weeks and what a great time they will have. I know I loved camp as a kid, and so did my boys. It was the highlight of summer.

Hopefully Justin will be on his way to help at camp late this week. We have been walking as a family and working to build his stamina back--a week in bed takes a lot of energy! He is really looking forward to it and ready to get back into life. His next doctor's appointment is in July, so he will miss a few days of work then , but otherwise he will be able to be there all summer, we think. Justin met some of the staff at camp. One of the guys about Justin's age working there noticed Justin's eyes (they have some blood where the white of the eyes are). He just shrugged and said, "I have epilepsy, too". That made Justin more comfortable. He won't be the only one.

I read up on epilepsy, and found out more about it. I always thought that epilepsy was a disease that caused seizures. But it is actually a word that describes that you have had more than one seizure, for any unknown reason. Any person that has had more than one seizure for any unknown reason has epilepsy. I didn't know that until now. Our doctor told us Justin's cause is known, so we call it "seizure disorder."

Next Appointment: July

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.

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 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.

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.

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.

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.

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.

Movie Night

Justin went to a movie tonight with his brothers and sister-in-laws. He was looking forward to it all week. They have had him out longer than I (Mommy) would have thought wise...however, Josh and Hannah leave Monday morning, so he can catch up then. He needed a night out after the week he has had.

There's No Place Like Home

We are home and it is nice to be here. Before we left Iowa City, they set Justin up with all his meds, instructions and information. He has to get the threes staples out of his head (from the brain biopsy) in a week in Des Moines, then will have appointments with the head and neck doctors, the radiology oncologist the neurosurgery doctor in Iowa City over the next few weeks. As the doctors gather more information, then treatments will begin. Now Justin is lounging on the couch, comfy and cozy. No nurses, doctors, or needles. It is good to be home.

Morning Doctor's Report

As usual, the pack of doctors came in just after 6:00 this morning. They didn't have a lot to say this time. They are discharging Justin today after lunch. He will be able to live at home while he does treatments and appointments as an outpatient. He has no real restrictions, except to stay away from contact sports, skydiving, mountain climbing, and other activities that would be dangerous if he had a seizure. The doctors don't expect him to have another one, but said to be cautious anyway. And the best news is that he can work, so hopefully the job he got at the camp is still open and he can start there pretty soon. He will have to plan his work schedule around the treatments, but that shouldn't be too much of an issue.

We are all SO ready to go home! It is hard to live in and around a hospital. Justin has not had a true good night's sleep for weeks, so it will be wonderful for him to really and truly rest.
I have been trying to balance myself to learn about Justin's tumor without scaring myself to death. The Internet is a great place for information, but much of it does not apply to Justin specifically. So I will trust in God's perfect plan, trust that the doctors are doing their best, and help Justin have the best life he can possibly have.

A Normal Night

Tonight feels almost normal (if you can ignore the doctors, nurses, pills, blood pressures, etc.). Josh and Hannah brought in Godfather's Taco Pizza and we all sat around and watched TV in Justin's room. A far cry from just a few days ago! The nurses are still carefully attending to Justin, but there is not a lot to do. They ask every time, "is there ANYTHING you need?" and he always answers, "no, I'm fine." Many have commented that he is the best patient they have ever had.

We laughed our heads off at Josh and Hannah playing a game of "bloody knuckles". It was hilarious and we had to keep our laughing quiet so we wouldn't disturb others.

Hannah and I went through a computer program educating us about seizures, just in case. It was a good thing for everyone to know. We hope that it never happens again, but if it does, we will be more prepared.

Tonight will be Justin's first night to sleep in the hospital alone. We all know he could handle it alone, but why? So one of us was here every night, just to make sure he had everything he needed and didn't have lay here with no one to talk to if he wanted. Tonight most of the family has gone home, and Justin doesn't have any immediate concerns. It is not new or unfamiliar now, so we can all get a good night's sleep and be refreshed for tomorrow. It will be another big day.

Future Plans

The doctors have made a preliminary diagnosis of a low-grade glioma with Justin's biopsy. It will be a few days to a week before they will know for sure. It sounds as if the tumor is slow growing, so the doctors want to allow a few months to see if there is any change in the tumor. Unless the diagnosis is different than what they think now, they will plan a treatment once they can see what it is doing. So it may be 8 weeks or so before they know much more than they know now.The head and neck doctors will have an appointment with Justin next week to discuss treatment options for the thyroid. That could be surgery, drugs or "wait and see". Once again, we have partial answers, but that is better than not knowing anything.Now they are gearing up to send Justin home. He may be able to leave as early as tomorrow, depending on how things are going and if any of his doctors still have tests or questions. We may be back here quite often, but that's OK. He sure would rather sleep in his own bed than in a hospital! Thanks for all your prayers--we feel ourselves being lifted up and carried by our family and friends. There truly is "peace in the midst of the storm." We love you all.

More Visitors

Todd and Marty came up for a visit this morning. We were thrilled that they drove so far to pray with us and be an encouragement. And they were! Jason & Tammy's church sent and orchid. The card said on it, "we will FIGHT for you in prayer". Wow, that was powerful! We all agree that God has a plan and we are just to be faithful walking in that plan.

The nursing staff is weaning Justin off some of his meds. He is unhooked from all the monitors and IV, and is bored silly. He got to have a whirlpool bath today, all the cable TV he wants, his choice of the best hospital foods we have ever seen, and people waiting on him hand and foot. But he still wants to go home. I don't blame him a bit!

Quiet Night

Justin slept well all night. He actually woke up before 6AM and felt rested. His pain is low this morning. The doctors came in on their usual rounds and didn't have much to add to what we already know. I asked about the thyroid because I haven't heard from the head and neck doctors for a few days. One of the student doctors said that they have an appointment set up for Justin in 4 days. I am unclear what that is for, but we will know more later. They unhooked him from the heart monitors and IV. They will hook up the IV again to administer certain meds, but he won't need it 24/7. He finally got to eat, and said that was great.