Christmas Day

Christmas Day was not easy on Justin. He did not feel very well all day. In his case, it isn't the flu or a cold, but unwanted brain activity that gives him no rest. He went back to bed many times, only to be up a short time later, unable to sleep. It is very frustrating to him to have to fight with sleeplessness while in bed, and tiredness while up. He has to sleep in a certain position due to his brain complaining of discomfort if he is on one side, or his enlarged thyroid cutting off his airway if he is on the other. He has not been able to sleep well for almost a year.

We had family over for Christmas. I could tell that Justin was glad to see them, but I could also see that he was miserable from not feeling well. He tried to sleep while they were here but couldn't, and tried to stay up and visit but was distracted by his brain processing several things at once. It gives him messages like he is two places at the same time. Part of his brain is present where he is, and is aware of what is going on around him, just like most people. But he has an added element where he is also getting messages as if he is watching (or playing in) a football game, riding a roller coaster, doing other activities, or even weird stuff that might happen in a nightmare. It is highly distracting, especially when the house is already full of people and activities, the TV or radio is on and there is noise everywhere.

We chose not to do gifts this year due to the upcoming treatments, so that was strange, too. You always hear people say, "it isn't about gifts anyway", but when it is you, it feels awful. Justin has no income, so he didn't have a choice. But it was really touching when he went in his room and brought out some of his books to give to his aunt and grandma. Giving gifts at Christmas is just so natural and normal that he couldn't help himself. That was really good to see.

I am going to start posting more often, so you will want to check here more from now on. Things are progressing quickly. I only have 8 more days of work until I am off for 7 weeks. God will have to provide for this, as it is not humanly possible to do it alone.

We are still praying for total healing for Justin. But we want to pray that the radiation works to shrink the tumor and gets rid of all the unwanted brain "blips" that he has so he can live a more normal life.

It will be an adventure seeing what God is about to do...stay tuned for His plan!

A Month To Go

Although we will not actually know the exact date Justin's radiation starts, it should be about a month from now. We won't know the start date until the 7th of January. He is looking forward to it, so he can get back to some sort of normal life.

God sent a wonderful blessing last week...he provided a house for us to live in for at least a year. The house is big and has plenty of room for Justin, his brother, sister-in-law, nephew and myself. We can all help each other as we go through this time in our lives. We are excited and thrilled to have such a great place to live. We are also excited that we all had this great idea to live in one big household. People in many other cultures to it all the time...why not us? Each of us has something to give, and each of us can use the help of others. I am glad that when we are out of town for the radiation, the house will not be empty at all. We will be able to come HOME to family, friends, hot meals and our own beds.

No News ISN'T Good News

We have not heard from the hospital, the doctors, the nurses, the social worker or the Hope Lodge yet. The more time goes by, the more it looks as if we will indeed have to fund our own lodging.

Justin is having some of those crazy "blips" every day. Usually they are after-lunch pills and after-supper pills. We know they are coming from his brain connections not quite hitting right. Although they are not dangerous, they keep him from wanting to go out. It has been quite some time since he actually went out. We hope and pray that will change after the radiation.

Another Setback, But Still Moving Forward

I called the nurse to get a real number on the treatment time, so that I could let my bosses know. I had heard 5 weeks and 6 weeks and 5-6 weeks. So I asked if she could tell me a more exact number of weeks. She said, "sure-it is actually 6 1/2 weeks." So I will be off work from January 12 to March 1. I won't get paid. The bosses will keep my insurance in place if I pay the premiums. Ugh.

At every visit to the cancer doctor, he and his nurse kept telling us that there was a place for us to stay for free at the hospital during radiation. That was one of the main reasons that I felt we could do this. They told us every time. I asked about it because we MUST know if this is really available for us or not. The nurse told me repeatedly that although there is a tiny chance we wouldn't get it, they had never had anyone turned away yet. They probably thought I was a pest, but I asked about it every time I called. The answer was always the same. It is for you, it is free, it is available.

Call me a skeptic, but I really wanted a little more guarantee than that. I had to call the social worker about what to keep track of for someday if Justin can get on disability, and so I brought it up with her to see if we could "sign up".
"Oh, no, that is not available for you. That place is just for people with stage 4 cancer going through radiation," she said sweetly.
"Dr What's his name and Nurse So-and-so told me that it was OK." I said.
"Well, they would like it to be, but it is sponsored by the American Cancer Society and they have strict regulations about who stays. Justin just isn't sick enough."

So now we are planning for over 6 weeks in a hotel. Thankfully the hospital rates are a lot lower than retail, so that helps. But it is a little overwhelming on paper.

I want to keep Justin happy and healthy. I don't want to have to worry him with unexpected things or "impossible" situations. So we really don't spend much time talking about HOW, just when and what.

I am encouraging Justin to write his book while we are there. He has an action/adventure novel in his head...he needs to put it on paper and get it published. It is very exciting and draws you in right away. I have read sections can't wait to read the whole thing, even though I know how it ends!

January Plans

Nurse Kelly called from Iowa City. Justin has an information meeting/appointment on January 7. They will do an MRI, CT scan, blood tests and other tests to be able to start radiation a few days later. We will get lots of information that day about what will happen, what to expect, and the schedule Justin will follow.

Justin is on two anti-seizure meds, but still has seizure activity. It looks different this time and feels different to him. Now it looks and feels like dizzy spells, but he is still out of it and he still isn't sure what is going on at the time. He has had a few close calls dropping things, losing his balance and even falling.

I asked about Disability, since Justin cannot work now, but he was turned down. He does not qualify. I was angry at first because I can't imagine how this does not qualify as a disability. An incurable brain tumor with the patient on radiation? But the social worker at the hospital said that a person must be disabled a whole year before they qualify. OK, I understand now. So it looks as if there will be no help in that direction.

We will be working to get ahead before the radiation starts. I am looking for a temporary 2nd job, gathering things to sell on ebay or Craigslist, and cutting every corner I can. Hopefully I can get enough to pay some of the bills while we are in Iowa City. My bosses had a meeting today, and one of the things on the agenda is how my employment and insurance will work through this leave of absence. I appreciate that they are willing to let me have the time off. That is one less thing to worry about.

Keep praying, Friend. We rely on your prayers and thank you for them.

A Decision Made

Justin requested that we look into beginning the radiation. He is tired of being around the house, waiting, waiting, waiting. He does not want to go on like this. At least the radiation will be something to DO, instead of nothing.

I called the nurse and she is making the arrangements to begin the appointments, testing and preliminaries for the radiation. It will begin after Christmas, 5 days a week for 5 or 6 weeks.

Pray for us. Humanly speaking, there is no way for us to do this. The hospital is 120 miles away, so daily trips are not practical. My car is not as roadworthy as it once was and needs some work and tires. Even though many of the medical treatments will be covered, there is still food, gas, as place to stay while there, and keeping up with the rent and bills on this end. I would love to be with him through the first round, which will mean no income. My bosses have assured me that I can take a leave of absence for this, and I can keep my insurance going, although I will have to pay the premiums. Realistically, we can't do it. But God is a God that works out problems like this. Pray that He will guide and provide for all that Justin needs.

My family, friends and church family are praying for absolute and complete healing for Justin from this tumor. Above all, this would be our first prayer. Thanks.

Another Blood Test

I called the doctor about Justin. I asked if the meds could be off, too strong or not strong enough? He ordered a blood test, which showed that the levels were normal. He suggested that we think about starting radiation, which might take some pressure off by reducing the size of the tumor.

We have been looking for a 2nd opinion. Not that we think the doctors are wrong, we just want to make sure they are right. People get 2nd opinions for all sorts of things. I imagine a brain tumor would be near the top of that list.

A Bad Fall

While worshiping at church with Jason and Tammy tonight, Justin felt very dizzy. He had been standing for quite some time and began to feel the dizziness coming on. Each moment that passed made him believe that it was almost over, that it would pass and that he would be OK. However, that didn't happen. He passed out, his knees buckled, and he fell right into the wall, head first. He was out cold. He was at the back of the church, so not very many people saw it, but those who did came running. They all wanted to call for an ambulance, but Jason let them know that was not necessary, we would take him to the doc if needed. Justin came to, and wondered what he was doing looking at the ceiling.

Other than a killer headache, plus a nice goose egg on the side of his head, he is fine now. But we WILL be calling the doctor first thing in the morning to see if we can get this dizziness figured out.

A New Symptom

The new medicine seems to be working. Justin says now that he feels dizzy just after taking his meds, but we hope that will go away. He is much happier and has more energy now.

The Main Doctor

Justin's main doctor came in and told us that he looked at the MRI and the tumor did not have a "huge change". We have no idea what that means, but will take it as good news. He said in light of the increase in seizure activity, there were two options; add another anti seizure medication or start radiation. Radiation would be 5 days a week, for 5 or 6 weeks, 120 miles from home. Justin said right away that he would like to try the meds first. The doctor agreed and so did I.

Great news; after being on the medicine just one day, all seizure activity stopped. Justin seems like his old self again and is much happier. He is still sleeping a lot and says he is dizzy all day, but that will probably go away as the doctor adjusts the amounts of each.

Results and Confirmation

Whenever we go to the hospital, Justin is seen by several doctors. First the nurse or assistant, then a resident doctor or two, then his "real" doctor. Usually by the time we get to see his regular doctor, we have figured out exactly what we want to say to him, and what questions to ask. The nurse and the residents spend lots of time asking questions, giving answers, and just making sure everything is OK.

Monday morning we left home at 4:45 am so that he would be there for his 7:00 MRI. The MRI went well and was fast enough that we could eat breakfast in the cafeteria before seeing the doctors.

The nurse went through some neuro testing and asked a bunch of questions. Then the resident came in and asked about the same questions and did some more tests. I got to ask him all of the 15 questions our family had written down. He answered some and then told us to ask the doctor the rest. One thing that he DID answer for us that encouraged us so much, was about the seizure activity. We pretty well knew that the small daytime episodes were seizures, but he confirmed it. I asked him if the seizures were controlled to the best of our ability and he said, "No. Having NO seizures means we are controlling them." Wow. That was what we needed to hear! I believe it was the greatest thing we learned the whole time we were there. Knowing that they are working to make sure he doesn't have ANY seizures made a big difference in Justin's demeanor right away. He had a whole new attitude on life!

Housebound

The last few weeks, we can't seem to get Justin out of the house at all. He does not want to leave at all. He is even a little nervous about going to church. It has been almost a week now. He has more and more of the daytime brain blips and they seem to be stronger. Yesterday he told his brother that he wasn't going to do much until he gets the MRI and some answers.

We think he has lost about 40 lbs since April (probably due to stopping all the soda pop). This is not a recommended diet plan.

Brain Blips

Justin's daytime "brain blip" activity has been getting worse. He will be chatting, goofing off, just being himself, and all of the sudden he is quiet, looking off to the side, sort of rigid with his eyes in a blank stare. I have been more and more convinced that this is seizure activity, so I called the nurse in Iowa City to express my concern. I told her that he was losing interest in everything; no longer pays much attention to sports, being out of the house, eating or even watching TV. I really knew this was worsening when I made homemade cookies and he didn't even have one right out of the oven! That was a first!

I let her know that this was not really acceptable and not a good way to live when you are only 25 years old. I wondered if his medicine dosage is wrong, or is it the wrong medicine for Justin? And can we make an appointment with a neurologist to learn more about the seizures? She told me she would get with me later.

I called Justin to tell him about it, and he said his eye had been hurting earlier in the day. I was a little worried, so I booked him with one of the eye doctors where I work. Thank the Lord, he had one of his brain blips while she was right there in the exam room with him. She is convinced it is seizures, too. NOW I have some credibility when talking to Justin's nurse. When she called back, I related what had happened with the eye doctor, and she let me know that Justin's doctor wants to see him for another MRI on Monday morning, Sept 29. That is 2 months early, but we believe it is necessary.

Not Again!

I woke up this morning with that awful, familiar sound. Justin was having a seizure. This one was pretty bad, and I felt so sad for him. He didn't breathe for quite a while--maybe 30-45 seconds (it just SEEMS like an hour!). He came out of it in a little while and we talked about it. He was VERY disappointed when I told him that we must go back to the hospital. What a discouragement that the medicine doesn't seem to be working like we thought it should.

We got to the hospital and got right in Triage. That was different. And they called him for the pretesting right away, which was nice. And they called him into the ER quickly. That just does not happen. Well, that was where the good ended. They tried again to put in an IV, and have him put on a gown. He again turned them down, but they still put the pads up on the gurney in the room. The doctor was a new one, and didn't really know what to do. We had to tell him the whole story; what is going on, who to call, what to ask, etc. He left to talk to his supervisor. When they came back, we had to go through the whole thing again. "We are not here for treatment, just for documentation that he had another seizure. Iowa City will want to know."

So off they went again. In a long time, the younger doctor came back and said they couldn't reach Justin's doctor, so they talked to "someone on call in another department there," who told them to put Justin on an ambulance for Iowa City. They said he needed to be seen there. I said "no, that is not necessary" and the doctor looked at me like I was putting my child's life in extreme danger. I explained that Justin has only had about 7 seizures since April, all occurring in his sleep in the early morning, and all weeks apart. We were just at Broadlawns for documentation. The doctor said I might have to sign a paper saying that I refused the ambulance for Justin and I said that was fine. So off the doctor went, again.

When he returned, he evidently had read through Justin's file and he was much more relaxed. He said they were fine with discharging him. Good.

Troubles Again

This morning I left for work before Justin was up. When I got home at supper time, we figured out that he had another seizure just after I left. AND he has been having little daytime "brain blips" that are not comfortable. I thought they were small seizures, but the doctor said he thought they were sleep deprivation.

So off to the (nearby) hospital we went again. They are actually pretty good there, though it is sometimes wild due to it being in the inner city. There were four security guards in the lobby, and they needed them all this time. Crazy. We got kicked out of the room in the ER, due to someone who was bleeding pretty bad. I'm fine with that. We can wait anywhere.

The doctor has to do a workup, then report to Iowa City, then they contact Justin's doctor there, who gets back to Broadlawns, who lets us know what to do. It just takes time. This time, Justin stood up for himself and said, "no IV, unless you have something going in me...", so they didn't put one in. They put soft pads on the gurney, just in case, and made him put on a gown--but with his shorts on. OK, he can handle that.

After waiting a long time, they decided to up his medication...again. Instead of 5 pills a day, it is now 6. Six is the most he can have, from what I hear. That isn't good, they make him tired. He still isn't sleeping much REAL sleep, but tired all day.

Good News

We went to Iowa City on Thursday to finally get that next MRI. The new MRI was to show the doctor whether the brain tumor has grown or not. Justin had the MRI scheduled for 8:00 am, so we were up at 5:30 in the morning for the drive over. Then to see the Radiology Oncologist for the results of the test. After that would be an appointment with the Hematology Oncologist for and hour to discuss the tumor, the treatment and anything we wanted to know. That was all set up months ahead.

The MRI went well, if you like that sort of thing. Justin does not appreciate them and would rather sleep through them, but they are too loud! He got headphones and had to listen to Celine Dion and other elevator-style music. Jason and I walked to the cafeteria for breakfast to kill some time. As we were walking back to wait for Justin, there he was, looking for us! So off we went to the cafeteria again, for Justin's breakfast. It was a strange time--wondering if the doctor is going to say, "You are miraculously healed!" or, "Sorry, you only have 3 months to live." You don't want to get your hopes up, yet you want a miracle. And though you don't know what to say, you do find words or even jokes to pass the time until you see the doctor.

As soon as we arrived at the doctor's office, they checked him in and sent him to have blood drawn. Again. He came out of the MRI with a band-aid, too. He takes it in stride. He went for vitals and then to the exam room. We sat in there for about 10 minutes until two student doctors came in to ask a bunch of questions and wrote notes. They gave him a quick physical check for his neurological fitness, I guess. They left and we waited again.

The long wait was over and the doctor and nurse came in. The doc said the MRI looks good, not any change to speak of. He was pleased with Justin's general health. He went through some information about seizure activity, and warned Justin that he needs to get proper sleep. Sleep deprivation will bring on seizure activity, so he needs to sleep well. Then he told us that since the MRI looks good, we would not need to keep the appointment with the hematology oncologist. He told us that Justin would be fine to have almost any job, and he has few restrictions. Justin will have another MRI in 3 months. He was free to go. It was a relief, and a blessing.

Keep up the prayers, friends. Justin has a long road ahead of him and needs to be sheltered in the arms of his Father. But for now, it is life as usual.

Family Camp Weekend

The Camp where Justin works decided this year to invite camp staffer's families to camp for the July 4th weekend. I went up for three days and had a great time. The camp was open for whatever we wanted to do, and the staff and families were all wonderful. Everything was available for the families to be able to enjoy each other's company and have a great weekend.

Along with the usual camp activities, we got to go out on the lake several times, play all sorts of games, watch a boat parade, go to town twice, eat out at a sweet little place on the lake, fight mosquitoes (!) and get to know other families better. There were bikes everywhere and a lot of us did the six mile trail around the lake. Justin and I almost won Jeopardy for our team, but lost at the last minute, because our main opponent had written some of the answers! We'll get them next time...

Along with all the fun, we had several heart-to-heart talks about life and death and how we see things. It was a great place to be able to do that.

This morning we went to church at a little church right on the camp property. It has been there since the mid-1800s and still has services on Sundays, at least during the summer. So many people came that we had to bring benches and place them alongside the windows on the sides of the church. It was a beautiful time, sitting outside with the big trees, green grass, gentle wind, birds, and the sounds of the people and boats on the lake. We sang some patriotic songs and had a good sermon. It made me think of what the olden days must have been like back then.

We were hoping Justin's new nephew would be born during our weekend, but it didn't happen. He could have been born on the holiday of the 4th, Justin's birthday on the 5th, or my birthday on the 6th. Guess he wanted his own day, and that's OK!

Justin feels fine most days and has been doing very well. Camp has been good for him. Now he is in the middle of the summer and looking ahead to what job will be available for him this fall. Please pray that he will find the right job. Thanks.

Lots of Rain, But Lots of Fun

Justin has been quite busy the last few weeks. So busy in fact, that he has not been able to keep in touch much. Without cell service, he has to rely on the camp computers, and having time for that has not happened.

It has rained and stormed just about every day since camp began, but that seems to be the norm for Iowa this month. It doesn't seem to be hampering their plans at all.

Tammy and Jason got to go up for the day on Wednesday. They emailed him to let him know they would be coming for a visit, but he didn't have time to check his email, so he had no idea they were coming.

When they got there, they were able to watch Justin in action with the campers. It was raining, so they were all in the gym playing a game. They said he looked great! He has lost weight, looks great, and seemed to be right in his element. That encouraged them so much. He was surprised and happy to see them. They went to a little cafe on the lake for lunch, to the grocery store, and a tour around the camp. They were very impressed. He told them all about the kids and how incredible they are. I know he is just where he needs and wants to be.

This week Justin will be a camp speaker. His theme is Jesus, My Firm Foundation. What a great week of messages to teach the kids...and something Justin knows all about!

Keep praying for Justin. We should hear from the hospital in the next few weeks regarding the date for his next MRI. We are praying that there will be no changes and his life can go on as usual. We are proud and happy about him.

First Week of Camp

Lots of weather at the camp...at least 2 severe thunderstorms blew through this week (one was during a tornado warning). All the guys called home from the basement, just to let their worried parents know they were OK. All I heard in the background was lots of laughing and joking, so I know they weren't scared. That is the fun of being at camp--it is all fun!

This week Justin got to attend his first Catholic mass. He joked that they were more interactive than the Baptists! Justin is in charge of the rock climbing wall, the campfires and some other things, plus helping the program director and counseling. As far as he knew, nobody knew about his brain tumor yet. He was getting ready to tell them about it when one of the storms blew in...

Ted Kennedy's surgery went well this morning. His doctor said that even though the malignant tumor cannot be cured, by surgically taking as much out as they can get gives the raditation and chemotherapy a better chance. Once again, Justin's tumor is similar, but not malignant at this point. So he has a much better outlook on a normal life. I have been very interested in reading and studying about this.

Justin seems healthy and happy. Praise God for that!

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.

Settled In For the Night

Justin returned with a band aid on his head. He's eating ice chips and taking some pretty good meds for pain. He chose not to take the strongest, but went one that is less strong. It is one of the only times he has ever asked for any medicine--even Tylenol--so I knew he was hurting some. His comment was, "my brain hurts," but said his pain level is a 4 out of 10. He is hoarse from the breathing tube but seems to be in pretty good spirits. One of the neurology student doctors just came in and said he is doing well.

Biopsy Details

Justin's biopsy was done with the newest state-of-the-art instruments. They placed little discs on Justin's head that were like little dime-sized GPS units. The surgeon didn't have to measure and place Justin in a certain position because the little discs would be the guide. Using the results of the 2 MRIs and the "global positioning", the surgeon made a little nick in the scalp, drilled a tiny little hole in Justin's skull, and guided the probe down to the precise location that they needed, less than an inch and a half deep. The probe is about the size of the inside part of an ink pen (the part that holds the ink). It has a hole in the side of it. Once the probe is exactly in the right place, a little suction pulls some cells into the probe and that is all there is to it. The cells go to the pathologist, the brain closes in on the hole, and there is a stitch put in the scalp if necessary. We were astonished at this quick and precise procedure. Five minutes with a highly specialized surgical team and equipment worth millions. Simply amazing.

Preliminary Results

The neurosurgeon came in a few minutes ago to give us a report. He said it went as expected, and all preliminary results are that it is an low-grade glioma. Justin is still in recovery, but should be back to his room within an hour. The whole family was thrilled with how open and friendly the doctor was. While he was explaining things, his pager went off and it was the staff in the recovery room, saying "all is well." Justin will have a CT scan tonight to make sure that there isn't any bleeding in the brain. He will able to eat now, which will be great because it has been about 24 hours.

Waiting....Again

I walked alongside as Justin was wheeled to the OR. We laughed and joked along the way and he was ready to go in and get this over with. It will be about 7PM before he is back up to his room. The doctor will have some info for us, then more tomorrow. Soon we should find out if he can go home soon and do all this as an outpatient, or if he has to stay awhile.

Next In Line

Justin just got back from another MRI. This one took much thinner images than the last one, which will be better for the doctor. He laughed that he got a good hour of sleep in the MRI! Grandma couldn't figure out how he could sleep with all that noise! He said, "you just get used to it." That is typical for him. He is next in line for the biopsy. All the operating rooms are busy, but when one opens up, he will go down. This time he will be put under a general anesthesia. He appears to be calm, and when the doctor asked if he was nervous, he said, "no, I just want to get it over with it." We should hear some preliminary results sometime this evening, then more final results in 3 or 4 days.

Grandma and Gale are here now, so that helps.

Brain Biopsy

One of the neurosurgeons came in to tell us all about the brain biopsy. It will happen as soon as they can fit him in the schedule. They placed some sensors all around his head that line up his brain on the MRI for the biopsy. They look like little green Life Savers breath mints stuck all over. The surgeon said that he does these biopsies a lot, which is good. He explained the whole thing in depth so we didn't have many questions. Justin is all hooked up to the IV again because of the steroid/blood sugar thing and the no food. His IV ports had "expired" so they had to be redone. This nurse got it in the first time and removed the 2nd one all together. Nice.

Some Good News

The team of doctors came in to let us know that there does not seem to be any connection between the thyroid and the brain tumor. But the best news is that the thyroid is benign. No cancer. That is great news! It is still greatly enlarged and blocking his airway, but they can deal with that as needed. It is not an emergency today. We are still waiting for the hospital to try to fit him in for the biopsy on the tumor. They will go into the brain from the top of his skull, but it will be small. They are trying to fit him in today, but we haven't heard yet.

An Amazing Young Man

Justin has endured so many things in the last few days; IVs that wouldn't go in the first 5 times, shots of all kinds, deep vein blood tests, finger pokes, medicine changes, needle biopsies, blood pressures & meds all through the day and night, packs of doctors and students looking, probing, testing and making rounds at 6:00AM. Throughout this ordeal, Justin has been an example of patience, peace and prayer. As a mom, you hope your children will be able to have the strength and fortitude to get through the trials of life. But to see them walk through something like this without complaint, crabbiness or anger is amazing. I am in awe of my son.

Midnight Surprise

Current mood:helpless

Josh here:

Well at the hospital tonight around 11:45 the nurse came into Justin's room and let him know that he wasn't allowed to eat or drink anything after midnight. Since we're all on edge a little anyway it didn't take long to figure out this was some sort of surgery prep.

You feel bad asking Justin things, or thinking out loud because you don't want to upset him......but jeesh, that's tough.

So anyway, we found out the doctor had called the nurses and told them to put Justin's discharge on hold and put him on npo (which means no food/drink).

Our assumption is that Justin is having a biopsy done on his tumor tomorrow, but we cannot be sure. The biopsies have been done on his thyroid so this surprise could have something to do with that as well.

Needless to say this is a sleepless night for his brothers. Not so much worry, but utter helplessness and a huge desire for this to all go away. Life has changed so much the last few days for all of us, and there isn't one of us here that wouldn't gladly lay down on the table and let this happen to us instead of Justin.

Please pray for Justin for this big day on Wednesday. The thought of anything poking into his brain makes me want to throw up, it's just sickening. I can't sleep, lay still, or even think straight. Jason has told me Justin has been praying all night, as have Jason and I. Thankfully mom is getting some sleep, as are the other girls. Hopefully we can get some rest after the doctor visits early in the morning and we know what's going on.

This is one of those nights that you really wish you could understand what God is doing, and why he has these plans for all of us--especially Justin.

Eye Info

For all of my coworkers and the doctors at Vision Park; I thought I would let you know Justin has the "best" conjunctival hemorrhages I have ever seen...just plain scary. I have pictures, but I'll save them for us--I'm not so sure anyone else would enjoy them!

Talking to the Doctor

This afternoon Justin, Jason and I went to the Radiology Oncologist. He was the one doctor we hadn't seen yet, so we had no idea what to expect. His nurse spoke with us first, then the student doctor, then all three of them. He was great. But the news wasn't so good. He said that the vascular malformation (the vein and vessel cluster) was actually the least of our worries. That was put on the back burner. He showed us the images from the brain scan. It was very clear that the thyroid was too big. Then as he went through the images one by one, we saw the tumor. I thought it would look like a walnut or golf ball with a definite shape and an outline. But what it looked like was a splash of milk on a regular brain. I was shocked that it looked like that, just part of the brain, not it's own identity. The doctor called it a low-grade glioma, which we had heard from some of the other doctors. They don't know yet what we are dealing with between the thyroid and the glioma. Did one cause the other to change, or are they two separate things that have nothing to do with each other? And is the glioma a low-grade, or is it changing? Once the results are in, there will be some meetings between the Oncologist and the Chief neurosurgeon to decide what to do. We are wiped out. This is a roller coaster ride no one wants to ride. I have to keep reminding myself that God knows and cares, and has a plan.

More Tests

This morning Justin had an ultrasound on his thyroid, plus another biopsy on the thyroid, this time in the front (yesterday they took it from the side). When he returned, he was very quiet. I know he is a tough guy and doing well, but I think after this many tests, he is just weary. After a shower to wash off all the junk left over from the EEG and other tests, he will probably feel better. They unhooked him from the heart monitors and took off all of the connectors hooked to his chest. Now he only has an IV line in each hand, which will stay in until he is discharged to go home. He is off the IV meds. This is good news. Now all of the meds he is on are in the pill form and he can get out of bed when he wants to. They are still working on getting his medicine levels correct, but he sure feels a lot more free than even a few hours ago. As I was writing this, the physical therapist came to take him for a walk to see if his coordination is OK. Until now, they have kept him close to his bed to make sure he wasn't having seizures anymore. He's back and got a good report.

Good Things to Know

The doctors here in Iowa City are amazing! They go in a group for rounds every morning from 6-7:00AM. They will give some explanations about what is going on first, then stay so we can ask questions. They gave us some more information on Justin's tumor and things are starting to make more sense now. The tumor is in an area of Justin's brain that controls speech and emotions. Although we haven't seen any problems with his speech, we have seen evidence of the emotional. For several years, Justin has complained of "panic attacks". I have been with him on a few of these occasions and there is nothing going on that shows. It is totally inward. Something in his head has been making him feel panic and anxiety that doesn't seem to have any connection with his life. It is very interesting to put the pieces together. Hopefully he won't have to suffer with this anymore.

Visitors

Jason and Tammy have been so helpful with everything since Saturday. Now Josh and Hannah are here from Atlanta and are also pitching in, too. We don't leave Justin alone much. He is an adult and could handle this fine alone, but why? What a blessing to have big brothers! His dad came up for late Sunday night and left Monday night. Barb and Sherry also came from Des Moines to bring us groceries for the motel room and be an encouragement. My small group sent a gift that will never be forgotten. I am in awe when I watch this love in action. Justin's roommate has not had one single visitor the whole time we have been here! I'm glad that Justin has such a loving support group. We have heard from family and friends from all over the country. Thank you, one and all!

Thyroid

They did a biopsy of Justin's thyroid yesterday and just told us they want to do another one today. We are not sure if this is good or bad, but the doctors didn't seem to be concerned, so we won't be either. They said it was very unusual for a patient to have 3 different independent issues going on at the same time. I think they want to know if one caused the others.

Something Else in the Brain

Neurologists came in to update us on the brain tumor. They had been studying that side of the brain, but saw something on the other side. It is a cluster of veins and vessels that are not right. There is a chance that they could have a "bleed". If Justin was older, they would just take the chance, but since he is only 24, they want to fix it. It is not in a place where they can operate, but the doctors said that radiation will work well. It might take two years but then it's fixed.

Shots, Tests and Pills

They started Justin on a medication to reduce the edema in the brain. It works well, but can cause the patient to be aggressive and have really high blood sugar. Because he is on that, they must now test his blood sugar--it is high--and give him shots of insulin. He is also on a medication to stop the seizures. We don't know how many he had, but it was at least four. Good news is that he has not had anything even resembling a seizure since the ambulance ride on Saturday. They give their patients Prilosec for tummies because most of the patients have nervous, acidy stomachs. I'm not sure what else he takes, but it is a pile. He swallows all of them at once with no trouble.

Human Pincushion

Justin has been the victim of numerous needles. He bears it so well, always strong, always calm and never complaining. His comment about the biopsy today was that it was boring. The nurse asked him later if they used any medication to make it numb and he said no. She asked if it was one poke and he said no, it was three. Three needles in the neck with no meds?!! And it was "boring"? He is so unlike his mom who would have to be peeled off the ceiling by her fingernails.

To Iowa City in an Ambulance

The ambulance arrived too soon, and they wouldn't let me ride along. So they took Justin alone, which was very hard for me--I wanted to be with him so bad. Jason, Tammy and I went to my place to trade cars, grab some stuff and get to Iowa City. It seemed like a long trip; praying, crying, trying to resolve what was going on, taking and making phone calls. It was really hard. We found that the worst part was the unknown. We all felt maybe he wouldn't live, and that was hard. I told God that I didn't want to play tug-of-war with Him. If He wanted Justin, I would not fight, although saying that is much easier than living it.

As soon as we arrived, we were taken right to the ER where the ambulance dropped him off. I noticed right away that his eyes were worse and puffy, his face was darker and redder, and there was blood by his mouth again. It came to me then, and was soon confirmed by the doctors that Justin had been suffering through some seizures, and had one in the ambulance on the way. I got really emotional then. The sore tongue, the rapid heart rate, the panic, the blood. My baby had been really sick and no one even knew...even he didn't know. We questioned each other about the symptoms that he had; when did we begin to see these? Poor guy. My heart just went out to him--knowing something was wrong, but not knowing. The neurosurgeons came in right away to explain to us what they were seeing. They put us at ease right away, "this is what we do, you are in the right place." They wanted an MRI done, but didn't know if they could get the staffing on a Saturday night. Bless her heart, a young gal came in just for Justin, so he had it done in just a few hours of his arrival.

We also had a visit from the head and neck doctors, who put a tiny camera down Justin's nose and took a look at his airway. The doctor said it was not very big and the thyroid was what was making it that way. They ordered a biopsy for Monday morning.

At about 6:45 Sunday morning, the doctors came in--in a group. The results of the MRI were in and they found Justin has one tumor, called a low-grade glioma. It is cancer, but it is very slow growing and not as invasive as some, so there were several options from surgery to doing nothing for now. They were more concerned with the thyroid being so large and making his airway small. The head and neck doctors will know more after the biopsy.With so much more information, we didn't feel such panic.

Something Is Not Right

Saturday morning I woke up to Justin on the living room floor, breathing but not responsive. He was moaning as if in pain and there was a little blood coming out of his nose and mouth. I was scared to death, mainly because I couldn't get him to respond. I wasn't sure what was going on, but I knew it was more than I could handle, so I called 911.

Once the police, firemen and EMTs were in the living room with us, he began to look around and slowly became more aware of himself. They got him to sit up and answer some simple questions. He took a ride to a local hospital, where they began to do a simple battery of tests. As the morning wore on, he became more and more like himself, although he couldn't remember anything from about 1:30AM on, nor why he was at the hospital.

Jason and Tammy were with me, and we began to try to figure out what happened. We recalled that he had been behaving differently for a few weeks; nothing too unusual, but not like Justin. He had complained that he was unable to sleep very well due to a racing heart, and he was having what he called "panic attacks." He also said his tongue was swollen. Jason had convinced Justin to go to the doctor on Friday due to the symptoms, and the doctor found that his thyroid was enlarged. He gave him some beta blocker for the racing heart, did some blood tests and said he would contact him on Monday with the results. Little did any of us know how much we would learn about Justin before then...

Justin was on the gurney in the ER and there were some physical issues that were not good. His face and eyelids appeared swollen and he had little broken capillaries all over his face. The scariest part was that both eyes had hemorrhages in them, so where the whites of his eyes were supposed to be, there was blood instead. I see this at work and knew there are various causes for this, but had never seen a case anywhere near this bad. Somewhere, somehow he was having some pressure issues.

One by one, the test results came back fine. His blood pressure was fine, even a bit low. His blood sugar was normal, thyroid levels were all fine. This doctor couldn't find anything wrong with him. He thought maybe it was a reaction to the beta blocker from the day before, but the symptoms were there before the first doctor prescribed them. Because they couldn't find any problems, they were planning to release Justin! I was shocked. The doctor said they had a certain protocol and that they hadn't found anything, so they had no reason to keep him there. I looked at the doctor and told him that there WAS something wrong. Just looking at Justin's face told me that he had some major problems. The doctor looked sympathetic but didn't have any reason to keep him. I finally reminded him of the enlarged thyroid and he admitted he hadn't actually looked at it yet. As soon as he felt it, he looked surprised at it's size. He said that it was bigger than he thought. He stood there a minute and finally said there were a few more tests he could do. He ordered a CT scan on the thyroid and left. I was relieved that he kept Justin there and told Jason and Tammy that if they had released him, I would have driven him right to another hospital.

Soon the doctor came back and said the thyroid was blocking Justin's airway. He said there was an Internal doctor there that suggested they do another CT scan, this time on his head, to see if there was possible bleeding in his head. As we were waiting, Justin began to sort of "zone out" and look sideways in a weird way. I asked him if he was OK, and he looked at me like he didn't even know me, so I ran for the nurse. The nurse watched him and tried to get his attention, but for a few minutes he was just "out of it." The nurse went right in to the doctor's office. By the time Justin went for the CT scan, he seemed to be OK again.

Very quickly after the 2nd CT scan, the doctor sat down. He took a big breath and said, "well, you have 2 tumors in your head. One is in the frontal lobe, and the other is behind it. We don't have the ability to deal with this here, so we want you to get to Iowa City. Since you had that episode a little while ago, we are going to send you by ambulance. They will be here shortly."

WHAT? Surely he was not speaking to us. He had the wrong room or the wrong person or something. It took me a minute to figure out what he was saying. And even then I had mixed emotions; relief that we were right and there was something wrong, but fear from what that meant.

The doctor left the room and we all looked at each other. We got up and went to Justin's bedside. Jason said, "we have to pray!" And we did.

In a few minutes, I asked Justin what he was thinking. He said, "well, I guess it answers some questions." How true.

Jason bent over Justin's bed and gave him a big hug. Justin said, "I wasn't your's first, I was God's first. Don't be sad." We all just broke down and cried.