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

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Monday, November 30, 2009

Correction: Amazing MRI

There is no 'leg' as I have called it. The leg turns out to be the spot that is smaller than a pea, and the other spot that the doctor doesn't think is cancer is smaller yet. He had to leave the 'pea' spot because taking it would have messed up some of Tony's abilities.

So the doctor believes he has it down to one spot about the size of half a pea. Now it is up to chemo.

Amazing MRI's

He met with the surgeon today, and is cleared to go home as far as the surgeon is concerned. He still needs to meet with the oncologist on Friday before he might be able to come home.

The new MRI's are amazing. With his January surgery, there was a white area (tumor) before surgery, and a somewhat smaller white area afterwards which was supposedly post-surgical changes, but apparently was tumor. This time, there was a white area before surgery, but now the MRI shows just a big black hole. There is no white area left. The doctor did leave the tumor 'leg' that goes deep into his brain, and there is a tiny spot smaller than a pea left on another part. A third small white area shows up, but the surgeon said he saw that area during surgery, and it was not tumor. The surgeon is confident both the 'leg' and the 'pea' can be handled by the oncologist.

The surgeon said the numbness spell Tony had over the weekend is normal during healing. Tony had played video games that day, so it is likely that his healing brain was just overworked. Just like if you operate on a leg, you have to take it easy while it heals...he will have to take it easy on games for awhile.

The surgeon and the oncologist want Tony to come back to Houston monthly for a few months so they can monitor the situation and remain his primary doctors. Based on the results thus far, it sounds like a good idea.

Saturday, November 28, 2009

Prayer request

His steroid medication is being cut back a notch tonight. This makes him really nervous and concerned about having a seizure in the next day or two since the steroids help prevent them.

Please pray that he won't have a seizure, and that he can stay calm...getting nervous doesn't help.

Friday, November 27, 2009

Everything seems back to normal after last night's hospital trip. He is acting and feeling normal again.

A night in the ER

He spent the night in the emergency room from 11PM last night until 11AM this morning. Earlier in the evening, he felt numbness in his arm, and it slowly spread to his leg, neck, and even scalp. The CAT scans showed no swelling, so the doctor doesn't seem concerned about it, and wants to continue reduction of the steroids. This kind of numbness can be part of the healing process as his brain starts to heal and reconnect.

This event knocked quite a bit of optimism out of his sails, so prayers for his personal outlook would be helpful.

You might avoid phone calls to them for the day. They are both pretty tired after being up all night at the hospital.

Tuesday, November 24, 2009

He is really hungry all the time because of the medicines, but the doctor has told him to only eat what he normally would. The doctor is concerned about his gaining too much weight.

He went to the store to shop for something for his Xbox, and he was pretty tired after (again the medicines).

He feels fine...if we could just get off all the medicine. In time I guess.

Monday, November 23, 2009

Tony says he feels better than he did even after the first surgery. He says he can type better, and feels better overall.

They have moved out of the trailer and into a cabin which has full sized furniture and full sized kitchen appliances. It is electric (so you don't run out of propane) and the heat and AC are much quieter.

Everybody will be resting better.

Sunday, November 22, 2009

Tony is moving his head around more today, as he doesn't feel quite so much 'sloshing' today. He is talking a lot and is glad to have Mom and others there to talk to.

Saturday, November 21, 2009

He is out of ICU and in a normal room, and probably will be until Monday. The MRI didn't show much yet, but confirmed that there isn't any problematic bleeding or anything unexpected. Tony isn't moving his head much because he can feel a 'sloshing' around in there...the doctor says that is to be expected for awhile.

The doctor said he got all of the main tumor. There is a leg of it that has grown down between lobes into a critical part of the brain, and he didn't go after that. He doesn't think that leg is very big, but later MRI's will tell us more.

Tony is feeling good and acting well.

Friday, November 20, 2009

He is doing GREAT!

He is in ICU, but is doing great! You can tell he is feeling good because he makes continual comments on TV shows as he watches them, and has a 'lilt' in his voice instead of a more monotone voice.

He appears to be more coordinated too. Just the way he moves to get comfortable in bed and the way he holds things is more fluid and coordinated. It is subtle, but was enough for his Mom to notice.

He gets an MRI tonight to see how much of the tumor is left behind.

Thursday, November 19, 2009

Surgery is done

His Mom reports that he came through surgery will all his functions in place...no reduction in abilities, no permanent numbness. He has a 'killer' headache...worse than he has ever had, so she didn't visit with him long at all. The hospital will basically knock him out tonight so he can rest.

The doctor thinks he was able to get almost all of the tumor. I am curious what "almost all" means to him. The anesthesiologist was wonderful; we can see why the surgeon wanted her and her only.

This is cool

Sherri was told to come to the phone about Tony, which put her on edge a bit, but it was Tony calling her from the operating room. They were actually removing the tumor while she was talking to him. We figure they were working in a speech area, and wanted to keep him talking.
Surgery started about 11:15 instead of 10AM. There probably won't be updates posted here during surgery. It should be done between 5PM and 7PM CST.

Wednesday, November 18, 2009

Surgery starts at 10AM and is expected to be 6-8 hours long.

More schedule changes...for the good

Surgery is definitely on for Thursday the 19th -- tomorrow. He will probably be out of the hospital on Sunday. There will be a two-week followup visit likely on Friday December the 4th. Then he can go back to Alaska for good. They said we could do the viral study followups in Dec, Jan, and Feb from Alaska without having to go to Houston.

His Mom, maternal grandparents, and a couple of friends from Arkansas plan to be there for the surgery.

The doctor says that since Tony has so few symptoms from the tumor right now, the surgery has a very low chance of causing problems. The most likely risk is more permanent numbness (really loss of proprioception) in his right arm. If it happens, he might require some therapy to get used to it or to get over it (I'm not sure which). The doctor also believes that by getting the tumor now and doing it while Tony is awake, that he can get enough of it that chemo can finish off the rest. Of course he can't promise that, and doesn't...but he thinks that is the most likely scenario.

May we have your prayers and wishes for a good outcome...

Surgery tomorrow

As of today, the surgery is set for tomorrow Thursday the 19th. This is of course subject to change, but it has been confirmed.

Tuesday, November 17, 2009

Another surgery is almost certain

The oncologist says the tumor has grown a little...minutely, but a little. This all but guarantees that the surgeon will want to take it out. Tony is scheduled to meet with the surgeon tomorrow.

The surgery may be back on for Thursday the 19th. The surgeon does not want to wait until the 24th, so he is trying to rearrange surgery schedules to free up the anesthesiologist for the 19th. The nurses say that this surgeon gets what he wants, so the surgery is most likely this Thursday.

Keeping Tony awake during certain parts of the procedure (not all of it) allows the surgeon to get more of the tumor with less risk of impact on his speaking, thinking, motor skills, etc. The oncologist is guessing they can get 95% of it this way. Chemo will have to get the rest, and the kind of chemo treatment will depend on analysis of the tumor after it is removed.

The surgery would be followed a couple of weeks later with a follow-up appointment and the start of chemo treatments. Tony still has to be in Houston in December, January, and February for checkups on the virus trial even though it hasn't worked. The FDA requires it to make sure he doesn't become contagious and pass the virus to others.

This development probably means that Tony and his Mom will be in Houston until mid-December before they could come back to Alaska.

Tony seems to have accepted this in-stride.

Monday, November 16, 2009

Possible schedule change

No health updates. Tony has had a good time talking a lot on Skype.

There is one possible change in schedules. IF he needs surgery, it will be on Nov 24th now instead of the 19th. The only anesthesiologist who can do the 'while he is awake' surgery is out-of-town until then. Let's just pray that he doesn't need it instead.

Tomorrow are the MRI and blood tests. Doctor appointments to review the results are tomorrow and Wednesday.

Sunday, November 15, 2009

He worshiped at the Cinco Ranch congregation this morning. They have an early service that fits well since he wakes up early every morning due to his medication. Nothing new health-wise to report.

Saturday, November 14, 2009

Nothing new to report on the medical front. Tony is confident that he will be coming home after Tuesday's MRI; and that is definitely our A plan.

Thursday, November 12, 2009

He and his Mom visited the last of the Houston City-Pass places today. It was the fine art museum downtown. Predictably, fine art was not his cup of tea.

Wednesday, November 11, 2009

Neutral news...

He saw the doctor today, and the doctor says he looks good. There were no new tests done, but doctors put a lot of stock in "eyeballs on the patient" to see how they are doing. His medications will continue at current levels.

The recent CAT scan does show some swelling, but that could be from tumor growth or from the virus spreading. The two doctors still disagree about whether a hole has formed in the tumor, but the MRI on the 17th should settle the matter...let's hope.

The doctor did say that if the MRI on the 17th shows any tumor growth, he wants to take it out. The tumor is small enough right now that he thinks he can take it out without loss of function, but if it grows much more it could be a problem. As a precaution, Tony has been scheduled for surgery on Thursday November the 19th. If he does the surgery, Tony would be kept awake during the surgery so the doctor could know when he was getting into sensitive areas...creepy but cool. We assume, but don't know, that if surgery is done, it would be followed by some sort of chemotherapy regimen.

As usual, we don't know exactly what is going on, and we don't know what is going to happen next. All we can do is prepare plan A, plan B, plan C, etc.

Tony's maternal grandparents will be down next week to stay with Tony and his Mom.

Tuesday, November 10, 2009

He is still drowsy from the medication, but feels fine. He toured the history museum today.

His MRI on the 18th has been rescheduled to the 17th so he can review results with the oncologist on the 17th and with the surgeon on the 18th. If things look good, he will start heading back to Alaska after that.

Monday, November 9, 2009

The CAT scan results show no change from the last scan, so we don't know why he had the numbness and headache the other day. He is okay right now.

He toured NASA today...moon rocks, Apollo 13, etc.

Sunday, November 8, 2009

He went to worship this morning. He isn't feeling bad, but he isn't quite feeling good...the medicine makes him drowsy.

Saturday, November 7, 2009

The doctors have increased his medication (we were ramping down), and he feels fine again. He visited the Houston aquarium. It turns out the aquarium is aimed at kids and young teens, but the white tigers were cool.

He has an appointment Wednesday with the doctor overseeing his treatment. We still haven't heard any results from Friday's CAT scan, so we assume it can't be too bad or they would have called immediately.

Friday, November 6, 2009

Today he had a spell of numbness in his arm which subsided and moved to his calf (that hasn't happened before). Then he had a headache and took some pain medicine for it (which he hasn't had to do for a while now). As a result, he had a CAT scan at 3PM. The doctors have been sent the images, but we don't have results yet.

Thursday, November 5, 2009

He and his Mom toured a Houston area ranch today. Four hours of walking and standing...he was bored, but had no problems with it.

Wednesday, November 4, 2009

Nothing eventful today. He visited the Houston zoo, and he feels fine. If things go well, there won't be much to report until after the appointments on the November the 18th.

Tuesday, November 3, 2009

He saw the oncologist today, and the oncologist is more positive about the results so far. He sees progress consistent with what he would expect (which isn't a lot by this point in treatment). He thinks he sees the beginning of the hole they are looking for. We are not getting excited about this though; as often happens...same data, different doctors, different interpretations. Besides, this is a long-haul situation; the short-term results aren't so important as the long-term.

Prayers to push things in the positive direction would be appreciated.

Tony still feels great. He and his Mom are going to kick off a tour of Houston over the next two weeks. They will visit places like the museum, zoo, etc on some sort of group ticket package.

Monday, November 2, 2009

You can leave Comments now...

I think I figured out how to enable comments without your having to have a Google account. Give it a try if you want.
Instructions:
When you post the comment, (1) Click on the link '0 Comments' or '1 Comments' or whatever the number is. (2) Type your message. (3) Select the option "Name/URL" in the 'Comment as' box under the message. (4) Type your name in the Name field and leave the URL blank. (5) Click Post Comment and it will ask you to type in some sort of funny word. (6) Type in the funny word. (7) Click Post Comment.

The MRI results are in

The MRI results are in, and the doctors don't quite know what to make of them. They don't show the 'hole' in the tumor the doctor is hoping to see based on past patients. The radiologists calculate that the tumor has shrunk just a little, but the doctor doesn't think so even though he does see some small changes in the tumor. Since this is all so new, they don't know if these results are good news or not.

The next scheduled MRI is the 18th. The doctor said depending on the results then, he would not rule out another surgery for removal of the tumor. We thought any further surgery was off-the-table at this point, so this is a new and surprising alternative.

Because of Tony's brief numbness over the weekend, they have stopped ramping down his steroids. He will maintain the current level for a week or so and see what happens.

Tony's blood work shows everything looking good except his liver enzymes which have crept up. This could be due to the virus, so they are watching that closely. It is more likely from the anti-seizure drugs and steroids. Either way, he won't take anything to correct this just yet because they need to know if this is related to the trial or not.

He gets his stitches out on Friday.