Thank you for keeping up with Tony's status as he was battling cancer.

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Saturday, October 31, 2009

He had a brief spell of numbness in his arm today. He and is Mom are going to call the doctors to see if anything needs to be done.

Thursday, October 29, 2009

No changes today. He still feels great.

Wednesday, October 28, 2009

He went to Galveston today about an hour or so drive one-way. There were no problems with riding in the car, walking quite a bit, or anything else. Compared to what he has done lately, it was a good day of activity, and it wasn't a challenge for him. He was chatty and lively all day.

Thanks for your prayers!

Tuesday, October 27, 2009

His platelet count is back up into the normal range. It is still lower than it has normally been, but it is in the low end of normal now. So getting him off the Pepcid seems to have done the trick. It will probably not get back up to full-normal until he can ramp down on the Keppra medication.

It was a bit worrisome when his count was below normal because he could have had bleeding at the biopsy site if the count wasn't high enough to cause clotting.

He is acting fine and feeling good.

Monday, October 26, 2009

MRI results show no change yet. That is good for two reasons (1) the tumor hasn't grown anymore and (2) this is what they expect to see this soon after the treatment. Blood work results for his platelet count will be later today. He is back at the trailer and hungry for lunch.

Sunday, October 25, 2009

He went to worship and bible class this morning without any problems at all. I think he wants to take a trip to Galveston this week if he is cleared to go at his appointment Monday.

Saturday, October 24, 2009

Blood tests show his blood platelets still being on the low side. His anti-seizure medicine is the likely cause since they recently had to crank it up pretty high. If the count gets too low, there is medication to handle it. He still acts and feels normal otherwise.

In case you were curious, he didn't loose much hair this time. They just shaved a small area about as big as a deck of playing cards. The procedure was done on the same line as his first incision and near the back of his head, so it won't cause any additional scarring.

He likes to sleep propped up because it is more comfortable for his head (less blood pressure in the healing area).

Friday, October 23, 2009

All is well according to the doctor visit today. It was just a few verbal questions and routine physical tests to check his function all followed by another blood draw. We should have the blood test results later today.

Next visit is scheduled for Monday.

Thursday, October 22, 2009

He is out of the hospital. His red blood cell count is a bit low which reduces clotting and increases the risk of bleeding (not a good thing inside a brain). As a result, he is required to take it easy until the count comes up. We don't know why the count is down, but it may be from the pepcid he has been taking for stomach upset problems.

He is to limit his time on the computer to an hour at a time with rests in between.

He has an appointments for a checkup tomorrow and an MRI on Monday.

Wednesday, October 21, 2009

Looking forward to a good night's sleep

We left him in his room about 8PM today. He was starting to doze off, and the nurses were planning on leaving him alone for the rest of the night so he could get a good night of sleep. He hasn't needed to take any pain medication today.
He has been moved from ICU to a regular room. His Mom says he is feeling lots better mostly because all the IV needles are out. He really hates having those in him.
He slept well last night (as well as you can in an ICU getting hourly visits from the nurses). The doctor said the CT scan yesterday shows no post-surgical problems. Plans are to move him out of ICU today and out of the hospital tomorrow.

Tuesday, October 20, 2009

He just had a CT scan at 4:00, but we don't have any results from it. He is eating well and ordered pizza for dinner. He has some pain now in the surgical area, but it isn't too bad. He is watching TV and is bored.
He is out of surgery (got out at noon) and in the ICU. He is alert and doesn't have any pain. The biopsy showed it to be tumor, so they went ahead with the injection. We visited with him for about half an hour, but he wanted to nap, so we left. He has a CT scan scheduled at 3:00. We are staying at the hospital until tonight. The last visiting is from 8-10PM.
He went in to surgery at 9:13AM. The biopsy has been sent for analysis, so we don't know if the injection will be done yet.

An interesting point...everyone in the operating room is wearing respirators. This is a precaution usually only for really bad illnesses; in this situation they are being cautious in case the injection should become airborne.

He should be in surgery

He was taken into surgery at 8:15, so he might be out early. But getting in early may not mean anything since there could be quite a bit of pre-anesthesia work...the anesthesiologist was scheduled for 9:15.

We were told to expect an update from the nurse about 10:00.

Monday, October 19, 2009

Surgery tomorrow

He is scheduled for surgery at 9:15 AM tomorrow. He has to be there at 5:15 AM to check in and get all the preparation work. He is expected to be back in his room by noon.

The incision will be small, and the needle smaller. It is about an 18 gauge needle which (according to wikipedia) is about .05 inches diameter or 1/20th of an inch or 1.27 mm. The nurse says they don't expect him to have any ill effects other than recovering from anesthesia. He mentioned wanting to go to a music concert this weekend, and the nurse acted like it wouldn't be a problem at all. It leaves you with the impression that this could almost be an outpatient thing.

He is going to have some limitations on who he can be around for a while. There is some concern that his anti-cancer virus could 'shed' and then become catchable by others with a weakened immune system. It hasn't 'shed' in any of the other patients, and it isn't expected to; but the federal government is concerned, and they oversee the trial.

Sunday, October 18, 2009

Tony's thoughts for those that don't have Facebook

The following is copied from a message Tony sent out through Facebook.

Hey everyone,
I just thought I'd put a quick blurb out there about what's going on right now with me and all the treatment stuff that's up.

1: I have decided on a treatment and it's actually experiemental treatment that has been shown to cure brain tumors. The basic idea if you have seen the movie I Am Legend with the whole virus injection thing. That is what I'm going to be doing with my tumor cells, they are injecting my brain with a virus engineered to attack and kill cancer cells while not touching any other cells within the brain. If everything goes perfect the idea is that the virus will wipe out the cancer and I'll be healed completely no problems. if nothing else it will take out alot of the cells and leave much less than what is there and make it much more treatable.

2: I'm going to be living down in houston for the next month plus a bit and we found a great place right by the hospital and in a good part of town that is pretty inexpensive so things will work out pretty well.

3: It looks like in the long run also I'll be able to head home, doctors said I can fly because after the actual injection I will have to go back pretty frequently for the next month, but after that I only need to be here at 1, 2, 3, 4, 6, and every 2 months after that for a few years. this will allow me to probably get back to school, work, everything.

Just thought I'd let you know what's up more or less. Go ahead and copy paste this all you want to get the word out. thanks folks
Nothing new health-wise. Tony is acting just fine, but the medications make him tired so he tends to nod off when he isn't active.

We stayed Saturday night with the Loveland's, and worshipped with them in the morning. Sherri's uncle and aunt here in Houston loaned us a car, so now Sherri and I each have a car which makes logistics easier. My company arranged for me to have a temporary office in Houston Westlake complex so I can keep working while I am down here. Plans are to have dinner tonight with the family of one of my Anchorage co-workers.

Friday, October 16, 2009

Nothing new. He has his own room in our trailer with a bed and TV. He spends his time on his computer and watching TV. He is eating more than normal due to his medications. Some people visited yesterday and commented that he looked and acted like any ordinary healthy person.

Thursday, October 15, 2009

Nothing really to update. He did say he still has an occasional problem with his arm, but not much and not often.

Wednesday, October 14, 2009

Tony seems to be doing fine.
We spent our first night in our new temporary home. The beds are less than comfy, but do the job. Having a TV separate from the main living area is the best part of the deal; some can watch TV while others choose not to.

Tuesday, October 13, 2009

We have an address for the next month or so.

11991 South Main Street,
Houston, TX 77035

His knees and elbows did not ache today, so hopefully yesterday was a transitory event that will not return.

Monday, October 12, 2009

Tony qualifies for the trial, so we are moving forward. The surgery (really a needle biopsy and injection) is scheduled for October the 20th. He has to be there at 5AM for all the prep work. They will take a biopsy of the tumor, analyze it, and inject the virus if the analysis confirms a tumor.

We have a place to stay 'permanently' starting tomorrow -- an RV campground four miles south of the hospital. They have RV trailers on-site around a lake, and rent them to people...especially those needing a place to stay during medical care. Once we have the address, we will let people know. It is a very clean and safe-feeling place.

He still feels fine, but his knees and elbows ached some today. The doctors think it is from the steroids, so it should go away as he ramps down off of them.

Sunday, October 11, 2009

We don't have an address yet, and aren't sure when we will have one. We have stayed in two hotels and one friend's home since we got here. After tomorrow's appointment, we might be able to have an address for 10 days or more.
He participated in a full worship service this morning without a hint of any problems. He really is feeling good. He is just looking forward to tomorrow morning so we know which way to go next.

We are in a hotel directly across the street from the hospital. That way we don't have to worry about traffic in the morning while trying to make an 8AM appointment.

Saturday, October 10, 2009

We had a great day today. Tony is fully engaged, and didn't seem to suffer any ill effects from the activities.

We are looking forward to Monday to find out if he will be accepted into the trial. If he is, he will be in Houston for a month or more since he has to wait another week to let the chemo medicine levels drop before the biopsy and injection, then probably a month after that for frequent followup visits. The the biopsy and injection are planned for October 19th or 20th. If he is not accepted into the trial, he will likely pick up some different medicine, and would leave Houston that day or the next.

The biopsy has some possibly interesting twists to it. If it turns up aggressive cancer, he would be in the trial. If it turns up mild cancer, I don't know what happens but it might mean other treatments would work. If it turns up not cancer, he would be out of the trial...but we would know that area isn't cancer.

Interesting note: the trial is being sponsored by the owner of Home Depot.

Friday, October 9, 2009

He has chosen an option

Tony has chosen the clinical trial involving virus therapy. The idea is that a cold virus that has been modified to kill cancer cells but not harm healthy cells will be injected into the tumor area. The plan is that it will spread from cancer cell to cancer cell through replication until the cancer is gone.

There are still a couple of hurdles. First is an MRI tonight at 9PM to see if his tumor still is in the right place to qualify him for the trial. We will find out the results of the MRI Monday at 8AM. The second hurdle is actually during the surgery. They will biopsy the area to make sure it is a tumor. If it is not a tumor, then he doesn't qualify for the trial, and he will have to pick a different option. If it is a tumor, they will inject 1 milliliter of virus and close him up. That is followed by very frequent checkups at day 2, day 4, day 7 etc. in the Houston clinic. After four weeks, he could probably leave the Houston area and come back for checkups. At any point in the trial if it isn't working, he can opt out of it.

The trial has had three patients so far, and none have been cured, but all showed some improvement meaning that it did kill part of the tumor area. One lasted six months before the tumor came back, and they removed it by surgery. One lasted four months before it had to be removed by surgery. The third patient didn't respond well, but the injection was done in a separate surgery instead of at the same time as the biopsy, and they think that may have allowed the brain to set up defenses in between times. Tony will be receiving a larger dose of virus than the previous three patients. This kind of treatment did cure human cancer tumors in 60% of mice.

We have been praying for the cancer to go away; maybe this will be how it happens.

Miscellaneous info: his tumor had pockets with 70% division rate...15-20% is considered aggressive; the oncologist had never seen rates as high as 70%. But that could have been just the central part that was taken out; we don't know how aggressive the remaining tumor is.

Thursday, October 8, 2009

The virus therapy is an option

The hospital called today, and told us Tony is a prime candidate for the virus therapy (one of the two clinical trial options, and the only one that has cured cancer in animals). He is interested in hearing more about it, so we hope to have an appointment with the doctor in charge of the study on Friday, but it might not be until Monday. He is by no means sold on the idea yet because it would probably mean abandoning what has sort of worked so far.
He was feeling good today. He wanted to go to Galveston, but it didn't work out logistically...maybe later.

Wednesday, October 7, 2009

We, including Tony, went to bible class tonight with the Brinkley family, and he seemed to do fine through the whole thing. He was tired when we left, but stayed up late visiting afterwards at their house. He really does seem to be a whole lot better now that he knows what is going on and what his options are.

We are staying with the Brinkley's tonight and probably tomorrow as well...we are still making this up as we go.
He is doing well today. He feels and acts better than he has since diagnosis of the tumor's return in September. He was informed that one of the things he was worried about (occasional loss of proprioception in the arm) isn't such a big deal. People live with this as a lifelong side effect sometimes. It is not necessarily indicative of anything bad. That combined with knowledge that most of what we see is normal radiation damage which can cause swelling months after treatment, and knowledge that the tumor appears not to have changed much if any since January seems to have improved his mood well into the positive-acceptance range.

Tuesday, October 6, 2009

Results of the appointment

Most of what shows in the MRI is interpretted as post surgical changes and radiation damage. Damage from radiation sometimes doesn't show up for months after treatment. The swelling is reduced right now. However; they believe there is some tumor in the back part of his brain.
The doctors here say the tumor was a grade 4 from the beginning. The first group of doctors disagreed on grade 3 or 4 back in January. Even though we were told it was grade 3, the doctors here say the treatment Tony received was a grade 4 treatment. The bulk of the tumor was removed in the first surgery, but the back part of the tumor was not removed, and appears not to have changed any from January.

There won't be any surgery. The area affected would significantly impair his ability to read, do math, and any complex thought. As one doctor put it, he would wake up from surgery a very different person than he is today, and there would still be some cancer left. Since he is functioning well now (moving, feeling, thinking, speaking, etc), surgery has much more down side than up side at this time.

Four options have been presented. Two are amped up versions of his current chemo treatment. Both would increase the frequency of his chemo, and add an additional medicine with it that increases effectiveness. Two are clinical trials. One is a different chemo medicine that is in the last stages of trials, and shows more effective in brain tumors. The other is a virus therapy. They would inject a modified cold virus directly into the tumor. It has been modified to reproduce and kill cancer cells, and then quit.

He has an appointment on Friday to choose among the options. We have literature to read on each in order for him to make a decision.

Of the four options, only the virus therapy has shown to cure cancer (in animals), but only three human patients have taken this road so far (it is in the very first stages of trials). Of the three patients, two have responded well. The other three options have been shown to keep things at bay, but you have to switch between options as the cancer adapts to each treatment. He would have to be qualified for either trial, so those may end up not being options in the end.

The doctors here don't see any problems with Tony's flying, so depending on the option he chooses, we may be able to go back to Alaska. The surgeon here has a colleague in Anchorage he would work with to monitor progress.

The immediate plan is to ramp up on his current seizure medicine, and ramp down on steroids. His current seizure medicine won't affect his eligibility for trials. Other medicines might.

Monday, October 5, 2009

We are in the hotel in Houston. The trip was long, but okay. Bumpy roads are a problem; he can feel road bumps in his head like you and I might feel them in our gut. Most of the ride was smooth, but we had a couple of rough sections. He is feeling fine now.

Tomorrow we meet with the doctors. There is a shuttle from the hotel to the hospital. The hospital is less than a mile away.

Sunday, October 4, 2009

He went to worship this morning, and made it through the first part. For some reason, just being there with the crowd and the singing triggered a headache. We left after the offering. He is fine now.

Thanks for those who visited with us even though we didn't get to stay long.

Saturday, October 3, 2009

I know we have been posting that he is feeling okay, and he does most of the time; but there is some help we might need...prayers and people.

It is hard to tell for sure, but I think prayers are needed for a positive attitude and energy...not just for him, but for all of us. He is on high doses of some medications that are causing occasional side effects which have kept us trapped inside. I think that coupled with the possible magnitude of the situation and with the delay in getting to Houston is making it easy to slip toward the negative. I don't think we are negative right is just not very positive-feeling...kind of blah or the negative side of blah. Riding in a car has caused him headaches recently, so we are also concerned about the drive to Houston. The plan is to do it all in one day and get it over with.

I think we may also need some time with people where we just talk about non-cancer stuff. All of us are feeling a little reclusive because it is emotionally hard to revisit the situation with so many well-meaning people, and he gets a headache when there is too much commotion around him. In addition, we tend to dwell on cancer issues more than maybe we should. I hope all of us can get out for worship tomorrow because I think we need it before we go to Houston.

If we are able to get out tomorrow, please do visit with us, but try to minimize the talk of cancer issues, and not everyone at once please.

Just waiting

Just waiting around in the hotel. He had a headache last night, but seems to be fine today. His appetite is healthy, in part, from the steroids.

The current plan is to drive down to Houston on Monday instead of on Sunday.

Friday, October 2, 2009

Probably no update today

Just letting you know I don't have any news.

Thursday, October 1, 2009

He has an appointment in Houston

Tuesday morning, he is slated to meet with a surgeon and an oncologist at MD Anderson in Houston. Based on what we have been told so far, this probably indicates he will have another surgery, but we don't know for sure yet.

We will drive to Houston because flying is not good for a misbehaving brain.