Tony's status

Final Posting

2010-08-21T16:44:00.004-08:00

Hi everybody. It is kind of hard to end this blog. It has been a part of my daily life for a long time now. It has helped preserve my family's sanity by keeping people updated from one spot, and it has been somewhat therapeutic to put things in writing that I sometimes could not say in person or on the phone.

I do have a request of you. To help make Tony's death have the most meaning possible, take the following steps that we learned from his life.

Put God first.
Give of yourself and your time to others.
Seek out and enjoy good music and good friends.
Remember that your simple everyday actions reach much farther than you know.
Smile.

Finally, so we can all see Tony again...make sure you are saved. Read the Bible, and study it for yourself. Challenge "what you have always heard" or "what you have been told", and make sure it really is in the Bible.

Thank you for being such good friends to Tony, to Randi, to Sherri, and to me.

God's blessings on all of you,

Neal Collins

Thank you everyone

2010-08-14T21:38:00.004-08:00

Thanks to those who attended the memorial/celebration services for Tony, and to those that provided memories to be shared. It is good to know that so many cared about him. Some of the memories were serious, some sweet, some funny, and some raised my curiosity...Mitch, we need some details on this 'racing' story : )

Thanks to the Mount Comfort and Anchorage congregations for supporting the two services. Thanks to Jack and to Mike for conducting the services. Thank you to all our Arkansas and Alaska friends who made this possible.

I expect to make one more final post to wrap this up. I haven't figured out what to say yet, but it just doesn't seem complete yet. Thanks for following it.

Information for Memorial

2010-08-13T12:38:00.003-08:00

We just wanted to let everyone attending tomorrows memorial in Arkansas know that Mount Comfort Church of Christ is a little hard to find. Once you get off of 540 at the Porter Road exit, you will turn west and follow that road until you see the church building on your left. It is a ways down the road, but keep looking behind the houses on your left and you will see it through the trees.

There is a lot of construction going on on the road currently, but just follow your way through it and you will see the church on your left. For all of you with a GPS or looking on Google Maps, the address is:
3249 West Mount Comfort Road
Fayetteville, AR

Donations in lieu of flowers

2010-08-09T11:51:00.002-08:00

In lieu of flowers, donations can be made to either of the following.

Arctic Wind Flute Choir
7761 Lavs Circle
Anchorage, AK 99518

Mount Comfort Church of Christ
Campus Ministry
3249 W Mount Comfort Rd
Fayetteville, AR 72704

He traveled with the flute choir to both New Zealand and Scotland, and planned to travel on their next trip as well. The Campus Ministry is better known as Razorbacks For Christ (RFC) and he was very involved with them at college.

Memorial Gatherings

2010-08-07T19:55:00.004-08:00

Simultaneous memorial gatherings will be held for Tony this Saturday, August the 14th. One will be at the Mount Comfort Church of Christ in Fayetteville, Arkansas at 6:00 PM Central Time, and one will be held at the Anchorage Church of Christ in Anchorage, Alaska at 3:00 PM Alaska Time. Dress is casual. It will be a time to sing songs, and to revisit happy memories of Tony.

We need your help with this. Please email your happy memories of Tony to his Mom. These will be compiled and used in the memorial at both locations. Please send these emails as soon as possible, but not later than Wednesday night so there is time to review and work with them.

People are invited to join either gathering. Tony's physical family will be at the gathering in Arkansas where all his extended family can more easily attend. We debated about having two separate gatherings (one for Alaska and one for Arkansas), but we didn't feel we could go through this twice.

Please email your happy, and even funny, memories to his Mom so they can be shared with all.

Thank you...

2010-08-06T16:35:00.002-08:00

Thank you for all your comments here and on Facebook. We knew Tony had matured and blossomed at school, but reading everyone's comments tells us how much.

I don't know if this will help you in your grieving process or not, but I want to share something with you.

His Mom and I are doing fine with his death. Watching his abilities run downhill, knowing the almost certain end result of this kind of tumor, staying optimistic to help him stay optimistic, and watching him suffer the last few days was the hardest thing we have ever done.

He made it much easier for us when he let us know, on Tuesday, that he knew he was probably going to die, and that he was okay with it. Then we were free to talk to him about where he was going, to tell him that we were okay with it -- don't worry about us -- we are here to take care of you, etc.

In short, I ask you not to worry about us...we are probably feeling much much better than you are at this point. Think about all the good memories you have of Tony. Look up pictures of him on Facebook...I think you will find some of them even make you laugh.

It is over...

2010-08-05T17:22:00.003-08:00

Tony died about 3:45 PM today. We are sad he is gone, but glad his struggle and suffering are over. He appears to have gone peacefully. His sister is with her best friends in Arkansas.

We don't have any plans yet for any kind of visitation, service, etc.

Thank you for your prayers.

2010-08-05T11:21:00.002-08:00

The only change from yesterday is that his breathing is now shallow and rapid with short periods of no breathing. He moves his left arm and leg some like he is moving in his sleep.

His Mom and I take turns sitting with him to keep him company and watch for any needs. We can still get pain medicines in him via patch or absorbed in the mouth, but his other medicines require swallowing of a liquid or pill, and he isn't capable of doing that.

2010-08-04T22:03:00.002-08:00

He has taken nothing to eat or drink today, and has lain on his back all day. We believe he still knows what is going on about him, but he has not responded verbally.

2010-08-03T15:57:00.002-08:00

He is pretty out of it today. He did eat a little breakfast which he hasn't lately. We have liquid medications now since he was having trouble with pills sometimes. He says he hurts so we have given him some extra pain medication.

2010-08-03T03:27:00.002-08:00

We had another brief lucid conversation with him just now. He told us "nothing is going to take it away", "that's the way it is", and he indicated that he is ready to go. His words were not tinged with fear or resentment or anger...they were just a statement of fact and acceptance. He seemed worried about us (his Mom and I), but we told him not to be; and that we would be okay and follow him later. It is an enormous huge gigantic relief to know what he is thinking, and that he is okay with the way things are going. I hope he is comforted knowing we are ready too.

Earlier today, he said he was thinking about all his friends, but we couldn't understand much of what he said then. It is hard for me knowing that he knows what is going on, has something meaningful to say, but can't say it most of the time.

Thank you for your prayers. Please pray that Tony's peace will continue. Please pray for him to be healed and have his abilities restored. Please pray that God will provide us at least one more such lucid comforting moment for he and his sister to share before she leaves for school. She leaves Wednesday evening.

2010-08-02T13:54:00.003-08:00

He just finished listening to the Truth in Love TV program, and fell sound asleep during it. We record it and play it for him as part of a home Sunday service. He felt so bad yesterday that he didn't want a service. Today, he asked if it was Sunday, and replied 'bummer' when he found out it was yesterday, so we played the show and planned a short devotional after...but he is absolutely sound asleep now.

2010-08-02T12:27:00.002-08:00

He had a very rough night. He woke up a couple of times complaining of severe pain, but it went away after he used the commode. Pills are very hard to administer, so we are going to get liquid versions of as many of his medicines as we can.

It looks like his platelet count has not come up. He is getting new bruises too easily, and old bruises are growing instead of healing.

We think he finally understands that he won't be getting any more treatments. He asked when we were going to have his next blood test to see if he could have chemo. We told him that the doctors don't have any more treatments for him, that all we can do is pray for God to heal him, but that if he does get better, we can do some treatments. He lapsed back to sleep right after that...we only get a few seconds once or twice a day where we believe he understands us and we understand him, then he falls asleep.

On a related note, please pray for and support his sister. She will be going back to Arkansas this Wednesday to start work and to get ready for her sophomore year, and will likely be saying goodbye to her big brother for the last time. She fully comprehends what is going on. She will be traveling with her best friend to keep her company. They plan to see the sights around Fayetteville for a few days before her friend returns to Alaska.

Thanks for reading this blog, and thank you for your comments.

2010-08-01T23:00:00.003-08:00

He is sleeping soundly again. For a little bit today, he talked about enjoying the Arkansas band trip to Florida.

2010-08-01T15:30:00.002-08:00

He said that his head doesn't hurt today. The pain patch can take 24 to 48 hours to take effect, and it has been that long now. He still says very little, sleeps or rests all day, and eats almost nothing. He likes to drink instant breakfasts, orange juice, lemonade, and other flavored drinks. His eyes don't always close all the way during sleep, I think they used to.

This morning, during a lucid moment, he said he hopes he gets to go back to Arkansas. In perhaps a dreaming moment, he said he was practicing flute and needed an aide to help work with his students.

He doesn't always get up to use the commode now because the effort exhausts him. He has found that in-bed methods are much less taxing. We like it too because we get more interaction with him before he drifts back to sleep.

2010-07-31T20:15:00.002-08:00

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.

2010-07-30T17:37:00.001-08:00

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.

2010-07-30T16:05:00.005-08:00

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.

2010-07-29T19:23:00.002-08:00

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.

2010-07-29T11:14:00.002-08:00

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.

2010-07-27T20:57:00.002-08:00

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.

2010-07-26T20:37:00.002-08:00

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.

2010-07-25T14:24:00.002-08:00

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.

2010-07-24T10:32:00.002-08:00

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.

2010-07-22T20:51:00.002-08:00

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.

2010-07-22T15:23:00.002-08:00

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.

2010-07-21T19:12:00.002-08:00

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.

2010-07-21T14:41:00.003-08:00

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.

2010-07-20T15:23:00.003-08:00

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.

2010-07-20T12:02:00.002-08:00

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

2010-07-20T09:47:00.002-08:00

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.

2010-07-19T12:06:00.002-08:00

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.

2010-07-18T13:18:00.002-08:00

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.

2010-07-17T12:42:00.002-08:00

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.

2010-07-17T00:24:00.002-08:00

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.

2010-07-16T07:00:00.003-08:00

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.

2010-07-15T14:30:00.002-08:00

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.

2010-07-15T08:00:00.002-08:00

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.

2010-07-13T16:04:00.004-08:00

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.

2010-07-13T08:56:00.002-08:00

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.

2010-07-12T19:50:00.002-08:00

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.

2010-07-12T11:54:00.002-08:00

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.

2010-07-10T14:29:00.002-08:00

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.

2010-07-10T11:59:00.002-08:00

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.

2010-07-09T22:15:00.002-08:00

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.

2010-07-09T14:23:00.002-08:00

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.

2010-07-09T11:29:00.004-08:00

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.

2010-07-07T14:37:00.002-08:00

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.

2010-07-06T11:58:00.002-08:00

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.

2010-07-05T21:53:00.002-08:00

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.

2010-07-04T20:50:00.003-08:00

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.

2010-07-03T12:10:00.002-08:00

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.

2010-07-01T12:14:00.002-08:00

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.

2010-06-29T12:19:00.002-08:00

His hand and arm still act up if he tries to do anything much beyond reading a book, operating a TV remote, eating, etc. Anything done standing up or requiring larger or more forceful movements causes problems.

The doctor is going to prescribe a new anti-seizure medicine in hopes that Tony can move about more and not have his arm and hand act up. At first, the new medicine will be more sedative than what he is on, but his body should get used to it.

2010-06-27T18:08:00.003-08:00

He felt good until his shower today. The act of washing caused his right hand to involuntarily close tightly. Only through conscious effort can he open it; as soon as he relaxes, it forms a fist.

2010-06-27T15:01:00.003-08:00

He took his 'reset' pill this morning, and now feels better than he has in many many days. He acts like he feels pretty good, but he isn't ready to get out and go to worship. He is getting more coordinated with his left hand, but his right hand still is not of much use, and walking with a less-than-controlled right leg is a bit of a challenge too.

2010-06-26T13:35:00.001-08:00

The increased medication has helped his arm feel a little better, but just a little. He is up and watching TV, but is still tired.

2010-06-24T11:51:00.002-08:00

He got up early today and is laying on the couch watching TV. This feels good to me...at least he feels good enough to be out of bed.

2010-06-23T21:57:00.002-08:00

He spent several hours up and watching TV instead of resting in bed. He acts like he feels better.

He had a dizzy spell today, but it is probably a side effect of the medications. The doctor increased one of his anti-seizure medications today, and one of the main side effects is dizziness. However; Tony said his arm didn't feel as if it were on the verge of a seizure today.

Thanks for reading and for your interest in Tony.

2010-06-22T12:02:00.003-08:00

As of this morning, he hadn't had any new seizures, but he did take a reset pill last night shortly after laying down to sleep. He was up for a while yesterday to watch some Rugby on TV. Today he has a doctor appointment in Anchorage, but it is just to catch the doctor up on what is going on since the doctor will be administering his monthy infusion this time (instead of going to Houston for it).

2010-06-20T21:34:00.003-08:00

He stayed home from church today, but didn't have any seizures. He did take his 'reset' pill about midnight last night, and felt all day today like he could have a seizure, but he did not. He got up long enough to come in the living room and watch some TV with me, but otherwise stayed in bed.

When he is laying down, his arm regains some of its feeling and function, but he loses it when he gets up and about.

2010-06-19T22:17:00.003-08:00

He didn't have any seizures today. He got out of bed for lunch and for a few bathroom trips, but rested in bed otherwise.

2010-06-18T23:09:00.002-08:00

He has had four seizures today ranging from moderate to mild. The doctor has said the seizures don't hurt anything and aren't causing any damage; however, he is still very discouraged and frustrated. He wants to be able to walk and go places without undue effort, and he feels he can't. He spends lots of time reading in bed. He hasn't been playing his video games lately. I assume it is because he can't play well since his right hand has minimal control.

He started some new chemo medicine today. It is a monthly infusion along with two kinds of pills every day with no time off. Supposedly, these pills won't be hard on him.

Your prayers are definitely wanted and needed.

2010-06-18T12:18:00.002-08:00

He is back in Alaska and feels much better being home.

He has lost most use of his right arm. He can use it to push up from a chair, pull on a door, and large movements like that; but fine movements like writing, holding a spoon, pouring, etc are not working. Walking has become more difficult too -- requiring more concentration.

He seems to do better after a bit of exercise (walking, etc), but doesn't like to exercise...probably because it feels awkward.

2010-06-16T09:00:00.003-08:00

The tumor has grown some, but the doctor said it is not growing fast. The new regimen will be two oral medications (I don't know what kind yet) and the monthly carboplatin infusion. The cool part is he isn't scheduled to go back to Houston until August...he had been scheduled to go back in mid-July. He will need an MRI in July, but we can schedule that in Anchorage.

Lord willing, he will be back in Alaska tonight.

2010-06-15T14:42:00.002-08:00

The doctor is taking him off the current chemo treatment. The treatment is going to change to something else, but we don't know what yet. We won't know details until tomorrow when he sees the doctor again, but the MRI didn't show the progress expected by this point. It seems to show that the tumor or the swelling or something has grown some...not a lot but some. We are not surprised based on what we have seen in the last few weeks.

Please pray for the doctor to find a treatment that will work for Tony.

2010-06-15T09:39:00.001-08:00

The doctor has decided to get an MRI. This wasn't part of the planned visit, so it may delay coming home. May change a lot of things.

2010-06-14T23:03:00.002-08:00

Tomorrow, he will have blood work, a doctor visit in Houston, and (if all goes well) the start of his next 4-weeks worth of chemo treatments.

2010-06-14T07:48:00.002-08:00

He is on his way to Houston for his regular checkup and treatment. No MRI is scheduled this time, so we may not have any definitive progress to report. The stress of getting ready to travel made is symptoms increase, but this temporary increase happened last trip too.

2010-06-10T21:30:00.002-08:00

His physical therapy appointment bore good news. He has improved in every category but coordination. His therapist used to work in a neurologist's office, and said that his recent seizure is not uncommon when starting physical therapy. Therapy, after months of inactivity, is quite a stress on the body, and this stress causes his body to use up his anti-seizure medicine more quickly. The doctor might need to adjust his dosage accordingly.

Today he enjoyed a DVD full of "The Big Bang Theory" television episodes.

2010-06-09T21:58:00.003-08:00

He went to worship tonight, but left during the second song when his hand started to tremble. He took his reset pill, and is okay. He is talkative which means he is feeling good.

Since going on the steroids, he has regained much of the proprioception (the ability to know what your body is doing without looking at it) in his arm. He can tell where his arm is better than he has been able to in weeks.

Let's pray that he can maintain and gain on this without needing steroids.

2010-06-09T13:22:00.002-08:00

The doctor prescribed some steroids, and he felt better within a couple of hours of taking them. He doesn't seem to have recovered any more function, but he feels better.

2010-06-08T12:16:00.000-08:00

He feels about the same today as yesterday.

2010-06-07T20:12:00.002-08:00

His arm and leg started twitching tonight, so he took his reset pill to head off anything worse. He has commented that his arm and leg are not back to where they were before yesterday's events. He did enjoy watching sports on TV today. He felt good up until the twitching started tonight.

All-in-all, things don't seem to be going in the right direction.

2010-06-07T12:27:00.002-08:00

He feels better today after his Ativan and a good night's sleep. The doctors don't seem concerned with yesterday's events. They just said to keep them informed.

Continued prayers wouldn't hurt...

2010-06-06T22:51:00.002-08:00

The doctor told him to take one of his 'reset' pills (Ativan). If a seizure happens again tonight, he can go to the hospital, and they will give him a stronger IV version of it.

2010-06-06T21:32:00.001-08:00

He just had a seizure of his full right side. It lasted a couple of minutes, but he says he feels like it could start again. We have called the doctor's after-hours number.

2010-06-06T20:59:00.002-08:00

He says his arm, hand, leg, and foot are all much worse today. It started this afternoon without any event or anything obvious to initiate the change. He is suddenly feeling only about 40% control, but he had been around 60-70% lately.

This change has left him feeling down a bit. Me too for that matter.

We have notified his nurse at MD Anderson, and we will see what she has to say tomorrow.

Prayers please

2010-06-06T09:33:00.000-08:00

He doesn't feel well today, so won't be going to worship this morning.

2010-06-05T21:33:00.002-08:00

Today, he reported that he believes his right leg is gradually getting worse. He said that after every episode, it doesn't quite come back up to where it was before. He tripped on the stairs today carrying a plate of food. It takes visual concentration to carry without spilling and visual concentration to walk on the stairs...he can't watch the plate and his foot at the same time.

Prayers please.

2010-06-02T22:47:00.000-08:00

Another day without any arm episodes. Thanks for your prayers.

2010-06-02T12:19:00.002-08:00

Yesterday, he had no arm episodes or iffy feelings or anything like that. It was kind of nice after four days in a row of having something happen. It may be temperature-related. Yesterday was the first fairly cool day in awhile.

2010-05-30T15:14:00.002-08:00

He went to worship this morning. He woke up saying his arm felt 'iffy' but it improved after he got up, so we went. Mid-afternoon, he took one of his 'reset' pills because his right arm was feeling much weaker than normal.

2010-05-29T19:48:00.002-08:00

He went with friends on a four-hour excursion over to Point MacKenzie (sp). He isn't trusting his arm today, so has had me do some things he might have done himself recently. Resting seems to help.

2010-05-28T23:49:00.002-08:00

He had a small episode with his arm this evening, and took his 'reset' pill. But he also learned that he may be able to control it by just resting. He took the pill and lay down on the couch, and was almost immediately better. After a few minutes, he decided to go to bed, and it started again as he walked to his room. After laying down in bed, he is fine again.

2010-05-26T21:42:00.002-08:00

He says he is back to 'normal' as in 'back to what he was' before the episode yesterday. His Mom said she could see when it happened today. He was suddenly himself again. His brain is still a little fuzzy, but that is the chemo affecting him. This fuzziness happened last month, and cleared up in a few days. He took his last chemo pill today giving him two weeks off now.

Thanks for your prayers.

2010-05-26T12:25:00.003-08:00

He is better today, but still feels unsteady compared to recently. He is also a little confused. This isn't uncommon near the end of a chemo cycle. He has taken the wrong amounts of medicines a couple of times since yesterday, so we will need to dole out the medication until he gets back to normal. Let's pray that all the problems over the last day are related to the current chemo cycle, and that they clear up in a few days.

2010-05-25T22:06:00.002-08:00

He had a significant episode today affecting his right arm and leg. He has improved some since the episode, but isn't back where he has been lately. He has taken his medication that is supposed to 'reset' him, and is napping/sleeping. We will see how he is tomorrow.

2010-05-23T09:22:00.002-08:00

He is doing the exercises assigned. He can't tell any difference yet, but this takes time.

He doesn't feel good today, so won't be going to AM worship today. I hope he feels better later. He is in the last three or four days of this chemo cycle, so it isn't surprising he doesn't feel well.

2010-05-19T21:22:00.002-08:00

Sunday, he attended the concert for the flute choir that he was in during high school. Monday night, two friends came over and played video games until 2:30 AM. He had a lot of fun both times. Tonight, he went to devotional and bible class. He is feeling pretty good.

He started a course of physical therapy today, so now he had daily exercises to do.

2010-05-15T09:58:00.003-08:00

He and his Mom got home late yesterday. He seems to be fine. The sniffles appear to be due to allergy and not a cold. The doctors reduced the amount of blood thinner since he had some bleeding problems last cycle. They believe the chemo may be the main cause of the slow clotting, but they want to keep the chemo at full strength if at all possible.

2010-05-13T23:17:00.002-08:00

His blood count recovered, and he started his new round of chemo today. Unfortunately, he has caught the sniffles of some sort. He and his Mom are due back in Alaska Friday night. The short dose of steroids made him feel much better. I wish he could stay on them, but the long term side effects are nasty, so it isn't a good idea.

2010-05-12T21:08:00.002-08:00

His blood results improved a lot today over yesterday. He was at about 60% yesterday and is just over 90% today. Since he is close, they gave him some steroids that should put him over 100% tomorrow so he can start the next treatment cycle. If all goes as planned, he will be home Friday evening.

2010-05-11T16:09:00.003-08:00

The MRI results show that the tumor might have grown a little bit, but they can't tell for sure because the image was taken at a slightly different angle than the last one. However; swelling is way down from before, and that is a good sign. The doctors want him to remain on this treatment since it might be working when all others have failed so far.

He has to stay in Houston for a few extra days. His white blood cell count is too low to take the carboplatin (chemo) infusion today. They think he will be able to take the chemo on Thursday and fly home Friday...but that depends on his blood count.

His symptoms are worse in Houston, but the doctors said that is not unusual. Patients often don't want to leave home, don't want to travel, don't want to see the doctor, don't want to be in the hospital, don't want to be in Houston, and that amplifies any problems. The doctors think he will return to 'normal' when he gets home.

Physical therapy has been ordered for him because he has lost too much strength due to a combination of inactivity and tumor-related issues.

The doctor has cleared him to drive from a seizure perspective, but told us to try it out on some very low-traffic areas and take an honest assessment of his abilities. While possible seizures appear to be under control, it is a question of how much control he has of his right foot for gas and braking.

Thanks for your prayers and thoughts.

2010-05-10T18:12:00.002-08:00

He hasn't been so good in Houston. He had an arm episode, and had to take his medicine for that (he hadn't needed that in about 3 weeks). His arm was shaking too bad to sign in at the doctor, and he couldn't walk far without limping or being winded. He tripped and fell on the plane. He seemed to be doing well at home...it looks like either flying or going to the doctor in Houston doesn't sit well with him. Sherri thinks it is lack of sleep. He did admit that he gets nervous before these trips and doesn't sleep very well.

2010-05-09T21:43:00.003-08:00

He and his Mom are in Houston today through Wednesday. The blood work and MRI are scheduled on Monday with a doctor appointment on Tuesday to talk about the results. If the results are encouraging, we expect him to fly home Wednesday with the next 28 days of medication.

Based on my personal observations, I think he is better now than he was a month ago. I hope the doctors come to the same conclusion.

We now have a car to drive while we are in Houston, and some very good friends have offered us a place to park it between visits. Thank you...you know who you are.

2010-05-07T19:48:00.003-08:00

Tony is feeling better since this is his week off of the medicines. Next week he will be in Houston for an MRI and to start the next round of treatments. This MRI (at 8 weeks) will be the first one that has the potential to show whether or not the new treatment is working.

He is bored here, but not as bored as he is in Houston. He still gets his words confused sometimes saying the opposite from what he means (upper vs lower, pitcher vs catcher), but it went away last time when he got off his medicine...hopefully it will again.

2010-05-02T15:05:00.003-08:00

He went to worship this morning, and is napping to rest up for tonight. How he feels is very dependent on how much sleep and napping he gets in.

2010-05-02T09:14:00.003-08:00

He is having some problems with nosebleeds that are hard to stop. It makes him get out less since he doesn't want to be battling one in a public place.

2010-04-30T19:30:00.002-08:00

His blood tests show his clotting to be at 25% of what is considered low normal. We are cutting back on the blood thinner medicines, and modifying his diet to get things back in balance. His white count is off too which means he needs to avoid being anywhere around sick people until things get back in balance.