He has slept or rested with his eyes closed virtually all day. He says his head hurts in spite of taking his Vicodin and having a pain patch on. He has taken a few bites of food, but doesn't have much interest in it. He hasn't said much, and even getting a yes/no answer can be a challenge at times. He still gets up to use the bed-side commode, but it is a little harder to do. He does not feel good at all.

Wouldn't you know it. Just as I posted the last entry, he woke up and was incomprehensible again. But we figured out he needed to use the commode, and he is sound asleep again.

Today, he is pretty zonked out. He isn't really responding much, but we have a pretty good grasp of what he says when he says it. So I'd say his communication has improved a bit over yesterday.

We had a really nice visit with him for about half an hour in the wee hours this morning. He woke us up, and (in a very sleepy almost sleep-talking way) talked about wanting to return to college and how much he enjoyed the marching band trips to away games.

He is now using some patches to keep any pain in control. He is eating less than he was, and he is starting to have some trouble swallowing his pills. He fell out of bed earlier today, but some friends have loaned us an electric bed with rails that we can use to raise his head and feet without having to use lots of pillows...it is nice. When he fell, he scraped his right hand, and it hurt. This seems odd since that is the arm he can't feel, but apparently he can still feel some pain in it.

With each apparent setback, he seems to accept it pretty much in stride. When we have asked how he feels about the changes, he has said "it's what I've got" with an air of matter-of-fact acceptance.

He isn't on the computer anymore. He had collected quite a few characters, but since he accidentally saved over his Pokemon game, he hasn't been interested in starting over.

Thank you for reading this, and thank you for your prayers.

Tony is not doing well. The rate of decline is accelerating at an alarming rate. Just adjusting into a sitting position in bed wears him out requiring one or two rest periods during the process. This kind of in-bed adjustment was not a big deal yesterday. We have an adjustable hospital bed to put in his room, but he has refused it so far because he wants to keep his bed.

His mental function is at the point that we are not sure whether or not he knows what is going on about him. We understand very little of what he says. He talks a lot, but his words are either unrecognizable or used inappropriately. He falls asleep all the time now, and is not eating much.

We talked to the doctor today, and he does not recommend bothering Tony with any more blood tests. The doctor does not believe any chemo will help the tumor at this point, and he doesn't believe Tony's body can take another round of chemo. The focus from here on will be keeping him comfortable.

It is still hard to understand what he wants. The real problem is the nouns he chooses. Everything else is okay usually, but he calls things by the wrong name, and isn't consistent in his choices. The result is an ever-changing secret code we have to break. We mostly manage this by knowing his likes and routines so we can guess what he wants. He is still good with yes and no as we guess along.

He had a headache this morning, so his mobility is knocked down for a few hours.

His communication skills dropped another level late today. Earlier today he was pretty understandable, but we couldn't understand very much this evening. This kind of goes up and down, so it may come back up some. He is sleeping hard now.

He had a occupational therapist visit today and she showed a couple of tricks on moving him around. When he is in good form, I can help him get up and onto the stool without too much effort on my part (plenty on his part). When he is not feeling good, it is all I can do to get him up and down even with another person helping.

He is having more trouble finding the words he needs to communicate. He often uses the wrong word consistently even when reminded of what the right word is. Today, he directed us in clearing his shelves of old stuff and reorganizing them. He knows exactly what he wants even if we can't always understand. Right now, he wants to see a movie, and we can not figure out what it is he wants to see.

The right side of his mouth is not moving, and his speech is slurring a little. However; he is still fairly easy to understand. He much prefers to use the portable stool in his room rather than walk or wheel to the bathroom...it is much easier for him and for us.

His blood work came back low again, so he probably will not be able to start chemo yet. He has been off chemo for a couple of weeks now waiting for his body to recover for another treatment. he had a physical therapist work with him some today. That has helped him move a little better.

Since he has been having headaches every morning lately, we may give him his pain medicine before the headache rather than wait for it to show up each day.

It seems as if the tumor is winning; please pray for him.

He had a headache today, and took a Vicodin. He feels okay now, but has that drugged look and is tired. He did tell us what he wanted form the grocery store, and that shows interest in what is going on.

Getting him to the bathroom is very difficult now; we have to use the wheelchair and even that is hard to do. We have a portable stool we plan to try next time to see if that is easier.

Prayers please.

He has been having low moments on a daily basis the last couple days. While he has headaches, he has almost no use of any part of his body. Last night, we wheeled him from the bathroom back to bed because he could not stand or walk at all. However; most of the day he can walk with minimal assistance over very short distances.

He likes to eat. Being on steroids contributes to that, but it is good that he is interested in food. Yesterday morning he had no interest in food for a few hours, but that is the first time he hasn't wanted to eat, and he had a headache at the time. Vicodin takes care of the headaches when they happen.

He is looking forward to starting treatments again.

He woke up feeling and acting good today. Later he developed a headache, but took some Vicodin, and is fine now. He has played Pokemon most of the day in bed. He is still having trouble picking the words he wants when talking to us. We can figure out what he wants to say, but we have to work at it.

A home health nurse visited today. She will be able to come here to take blood for testing, and to consult on questions we have...all without his having to go to the doctors office. This will be a big help since getting him down the stairs and in the car is difficult these days. He will also have a physical and occupational therapist visiting regularly.

Thank you for your continued and fervent prayers.

Rumor control posting... because of some miscommunication within and without our family, some things need to be clarified.

(1) While Tony is not going back to MD Anderson, this does not mean he is stopping all treatments. He intends to continue treatments, but do them from Alaska rather than travel to Houston. The doctor at MD Anderson said he would call the doctor in Anchorage and pass along a treatment we can try.

(2) The number of 8-16 or so weeks has been tossed around. This is the number of weeks the doctors anticipate for anyone who takes no treatment. However; we plan to continue treatments.

(3) We have been told from the beginning that there is no cure for this cancer. The treatments are intended to manage the symptoms and slow the growth. For unknown reasons, some people are cured while being treated.

Please continue to pray for him...God willing, prayers are the only thing that can cure him.

He had a very difficult time with the stairs today. He needed strong support to make it down, and some help moving his leg to get up. He is contentedly playing Pokemon, and has been most of the day.

We don't plan on traveling back to MD Anderson in Houston. They said there are no other trials or protocols that he would qualify for...only standard cancer treatments that can be done in Alaska under the local doctor's care.

Both the local doctor and MD Anderson doctor have said we can continue treatment as long as we want to and see benefit, but there is no cure. This isn't really news since they have said this all along, but it is becoming more obvious day by day. Surgery is not an option as the tumor has worked its way into an area that you just don't mess with. MD Anderson said they would call the local doctor to discuss medical options.

He had more blood tests today, and he can't restart chemo yet because his blood count is still too low.

We have now talked to both the local doctor and the doctor at MD Anderson. They agree that the tumor is shrinking overall, but is growing and strengthening in one direction, and that growth continues to affect his abilities.

Like I said yesterday... this is a roller coaster ride.

We haven't heard from MD Anderson, but we were able to contact the local doctor and talk to them. Here is the latest.

The MRI from last week was mistakenly compared to an MRI from a year ago and not the one from a month ago. When compared to the one from last month, the tumor shows to be stable and shrinking...not growing. He has an appointment tomorrow to jump back on the chemo treatment since something seems to be working (chemo, prayers, diet, climate, whatever it is).

As usual, the roller coaster ride continues, but seems to be on the upslope at the moment.

Thank you.

He woke up today dizzy and with a headache. His Mom has called the doctor to report it, but no answers yet.

He sat up in bed most of the day playing on his computer. He got a headache and one point, and lay down for awhile. When he got up, he seemed to be a little less coherent that before the nap, but he may be back to his pre-nap level...it is hard to tell.

He seems to feel good again today too. He woke up hungry, had a good breakfast, and has been propped up in bed playing Pokemon on his computer since. He has not mentioned his legs hurting. His feet and ankles are less puffy than they have been.

We haven't heard from MD Anderson, but his Mom is going to call and let them know that he seems to be feeling better. His thinking, speaking, and balance have all improved a lot from his low point, but are still very far below where he was a few weeks ago.

He seems to be better today. He is initiating conversation a bit more, and he says he feels good. He looked around on Facebook for an hour or so, and started a new Pokemon Red game now that he has rediscovered how to set it up better. He is reasonably steady on his feet, and getting around pretty well compared to lately.

He turned on his computer, and got into Facebook and Pokemon without our help today. He even resized a window with click and drag. I know that may all sound lame, but we have had to help with some part of that every time before today.

Thank you for your prayers, and for letting us know you are thinking about us.

He couldn't move his feet this morning, and walking was difficult, and he was talking and moving very slowly. Whatever that was seems to have passed. He says his legs still hurt, and perhaps his right arm too. He did eat a good breakfast although it took longer than normal. He has been up on his own a couple of times since then.

He is up and looking at Facebook. We often have to help him get logged on, but he seems comfortable once he is in Facebook. I don't think he can reply, but he likes looking around.

Thank you for the cards. Getting a little note every day or so in the mail has been nice.

We didn't hear from MD Anderson yesterday. The doctor there likes to think things over and confer with colleagues, so he probably spent Friday doing that.

Thank you for your response to the Pokemon request. He now has a Pokemon player and games for it. A friend also emailed us a means for him to play it on his computer (this is what he really wanted to do all along, but we couldn't figure out how). Playing the game is a bit of a challenge for him cognitively (finding keys) and coordination-wise too (reaching keys), but as he plays, that gets easier. His blissful happy phase is gone, and he is back to his normal 'acceptance' mood, but having the computer game is helping.

He ate supper at the kitchen table today which is his first meal out of his bed in a long time. I don't know if that means he feels better though. His legs are hurting still, and he is taking pain pills for that. His vision was blurry today which is different from his previous complaint about seeing many of the same thing.

Please continue to pray for him and for us. I think we are all feeling better emotionally, let's just hope we can get some physical healing too.

He was still hurting last night in spite of the Vicodin. He fell asleep in bed watching movies. MD Anderson does have the MRI images, and the doctor was supposed to read them first thing this morning.

His legs started to hurt again today. They hurt a lot, and he started to curl up with the pain. The Anchorage doctor thinks it is the new anti-seizure medicine, but he doesn't want to change anything at this point since Tony is having some seizures, and MD Anderson needs to recommend what-next. He has prescribed some Vicodin to manage the pain until the MD Anderson doctors weigh-in...we haven't heard from them yet.

We haven't heard back from MD Anderson today, but they should have his latest MRI images by now. He spent a few hours at the ER last night. He couldn't move either foot, and he had pain in both legs from the knee down. While waiting in ER, the pain suddenly quit, and returned a couple of times. Then it quit for good, and the doctors could find no cause for it. Up until all this, he was more stable getting about than he has been lately, but he was worse than he has been lately on the way home. He also had a small seizure of his right arm along with eyelids before the ER trip.

He was basically coherent through the day, but lost most of that during the ER event. I don't know how he is this morning...probably still sleeping.

The preliminary MRI results indicate that the tumor has continued to grow. The images are being sent to MD Anderson for their review, but they had already said that our most recent behavioral reports are consistent with increased tumor activity.

His blood cell count was too low, so he is off his chemo until that rebounds.

He is content and enjoying himself and he is honestly happy. Right now he is sitting in bed listening to his music on his computer and playing with the Pokemon Gold game that Brian gave him. He had to re-learn how to turn on and use his computer, but he is doing pretty good with it today. He hasn't been truly content like this in a very long time.

As you pray for his healing, please also pray that he (and we) have peace and contentment and strength in this most trying of times.

He had a seizure in his arm today -- the first one since he has been on this new medicine. Two things were different today...(1) we tried to administer a couple of his medicines an hour apart in hopes that it would make him less light-headed/dizzy and (2) he played for an hour or two last night on a Gameboy that a friend brought over. The game was Gold, and was a bit more than he could understand what with his overly-medicated brain.

Today, he gets an MRI, has a doctor appointment, and may get a chemo infusion if his blood test results from yesterday allow it. The MRI has to be mailed to Houston and compared to previous ones, so we probably won't know until Friday what the results are.

Out of nowhere, he is suddenly interested in practicing typing on his computer. He also wants to play Pokemon Red, Blue, Green or Yellow from his Gameboy days so he can start working back up to more complicated games. We are glad he is interested in doing something.

We may have a lead, but if you know where we might get a working Gameboy machine and one of these games, please let me know at neal.a.collins@gmail.com.

His communication has slipped again. It isn't nearly as bad as it was (nod yes or no), but he is confused half the time. He made it up and down the stairs at our house to get to the doctor today, but barely made it inside the hospital doors before he needed a wheel chair. He has an MRI scheduled for tomorrow.

He did get on the computer and look around in Facebook yesterday, but he can't type any replies. He knows what he wants to type, but can't find the keys in the right order to make words. So he will eventually get to any Facebook notes...it just might be awhile between visits.

We have received quite a few cards for him in the mail. Thank you for sending them.

He is a little fuzzy and light-headed again after taking his Vimpat. I really hope the doctors will get him off of this ASAP.

His communication is MUCH better today. He is still a little off, but at least he understands you, and he can reply verbally without effort. He still chooses the wrong word on occasion, but this is way up from asking him to nod yes or no, and hoping he can.

Thank you for following the blog and, most of all, for your prayers.

We might be seeing some improvement already. Having cut back on the one medicine, he seems a bit more lucid, and he is trying to use his right arm again (he hasn't tried for days). Let's pray this trend continues.

He is going to have a significant change in medication direction. The doctor talked with the pharmacist, and the pharmacist said the likely culprit of the communication problems is not the Keppra, but instead the Vimpat. We are going to cut the Vimpat dosage in half immediately.

This makes a lot of sense. Tony got a little 'dizzy' with Vimpat anyway, and we doubled his Vimpat dosage just 2-3 days before he started the new medicine. He was a little dizzy after the doubling for a day or so, and the pharmacist says the new medicine works sort of like Vimpat.

We have been told to expect a small improvement tomorrow, and a big improvement by Monday. Fortunately, Tony probably won't remember any of this...he is so out-of-it.

He spent about 4 hours in the ER last night. He woke up about 11PM, and said he was dizzier than ever, and needed to go to the hospital. However; he was standing up straight, so dizzy wasn't the problem (we think light-headed might be what he meant). We tried to put him back in bed, but he physically resisted, and insisted on going to the hospital. Getting down the stairs to the car was very difficult; at one point I was completely holding him up. The transport chair that was given to us recently really came in handy getting around.

The blood tests showed nothing out of the ordinary - considering the medications he is on. A CAT scan showed no obvious brain changes, and no bleeding in the brain. So the doctor sent him home assuring him to relax and things would get better as the Keppra medication is reduced over the next six days.

The real challenge right now is communication. Frequently, he either can't understand what we are saying, or can't formulate a reply. We have to use simple yes/no questions. Even then he sometimes stares through you like he didn't hear. Sometimes you can see him struggling to respond before he does. Sometimes he can't say yes or no, so gives a thumb-up or thumb-down sign. Sometimes he is relatively lucid and can communicate a little.

The doctor's all tell us this will get better over the next six days as his Keppra medicine is gradually reduced to zero.

He seems to be a bit better today. He is up more, and sleeping less. He is a little less dizzy, but his thinking is still muddled. This was the first day of reducing one of his medicines...eight more days until he is off it.

A good friend at work has given us a transport chair. It is much lighter than a typical wheel chair and much easier to maneuver and push around and load in a car. Thank You. We have only had to use a chair once so far, and that was at last week's doctor appointment.

The doctor's believe that the dizziness and vision problems are both caused by an overdose of anti-seizure medicine...he is on three of them. Today, we will begin reducing one of them (Keppra), and he will be off it completely in nine days. The goal right now is to get him back to the point where he feels like getting out and about on a regular basis.

Thanks for keeping up with his status.

He got up some, but has been very dizzy today. It affects his vision; at times he sees 6 or more of everything which makes reading impossible. He was able to read some earlier today. Unfortunately this dizziness keeps him lieing down a lot, and often prevents him from reading to pass the time. He is still able to make trips to the bathroom (usually on his own), but accepts help bathing.

His Mom is going to call the doctors first thing in the AM and talk about his medication and see if it should be changed. The new medicine seems to have relaxed his arm (he is using it more, but still not much), but the constant dizziness is a significant downside.

He doesn't seem to get on the computer much anymore. If you wanted to say Hi, you could send him cards and notes the old-fashioned way at PO Box 671532, Chugiak, AK 99567-1532.

He fell last night trying to get back in bed. Dizziness is bad enough, but dizziness with a leaden leg and arm makes it much worse. We have borrowed a wheelchair and walker because, this morning, he asked about getting one. He didn't use either today, but may want to later. His medication leaves him confused at times, and at a loss for the right words. We will talk to the doctor Tuesday to see if something should be changed in his medication.

We held a very brief worship service at home today since he didn't get out again. A friend from church mowed our yard today...thank you. It needed it badly.

Tony says he feels like the tumor is growing, and is beginning to talk like he wants to go to Texas/Arkansas and stay there for the treatments. He says flying is hard on him, and I think he wants to see his friends in Arkansas, and wants to be closer to his doctors. The plan might be to stay in Arkansas, and drive to Houston for treatments. I don't know.

Please pray for the Lord to show us what to do next.

He gets out of bed now, but goes to sit in a recliner or lie on a couch. He says his arm feels a little better on the new medicine, but he is definitely sedated much more. He slipped and fell the other day, so we have added some stability aids in the bathroom.

His arm and hand function has improved today. He can touch his fingers and thumb together, and he automatically used his arm to help get out of bed today instead of sort of dragging it up with him. The new medication is definitely making him more sedated, and even loopy at times, but right now he is on a full dose of three different anti-seizure medicines. They are going to ramp him down off of one of them.

Please keep up your prayers for healing, function, and peace of mind as we go through this.