All seems to be well. He seems to be getting by with less rest, and almost no pain pills at all.

Nothing eventful to report. He is doing well and had a nice but quiet Christmas.

Today was a great day. No headaches, no pain pills, no arm episodes AND he spent 5 hours shopping with a friend, attended Wednesday night Bible study, and visited afterward for close to an hour. He has that spark that tells you he feels good. Let's pray that this trend continues.

An ER trip, but okay

Last night (Tuesday) he went to the Emergency Room with a possible blood clot in his arm. The pain had built up over the day, and we decided to have it checked out. He did have a clot, but it was a small one in the small vessels near the surface of his skin. Apparently this kind isn't a serious life-threatening kind because they sent him home with instructions to just apply heat pads and take Tylenol or Advil as-needed for any pain.

He took a pain pill early in the morning, but had no arm episodes, so it turned out to be a pretty good day despite the ER trip.

No arm episodes today, and no pain pills required. Pretty good day.

He had his first treatement of the medicine to prevent blood vessel growth. It is an IV drip that he will get every three weeks. He had no adverse reactions to the medicine.

He saw the Anchorage neurologist today. The doctor isn't overly concerned about the episodes he has with his arm so long as they aren't true seizures.

He is back in bed taking a nap. The chemo medicine main side effect is drowsiness, and he has that in spades.

He has had two episodes with his arm today. He has had one almost every day since the last hospital stay. We will talk about it with the doctor tomorrow. He visited with some friends today, but missed both worship services due to medicine side effects that make him very drowsy.

Nothing much to report. He's doing fine today. Hopefully we have lots of days like this.

He felt good yesterday. It seems like getting a good daily nap and adequate sleep is key to his well-being and recovery. He met with the local Anchorage doctor, and the doctor seems enthusiastic about working with the MD Anderson doctors on Tony's case.

He isn't feeling well today, and so won't be going to Wednesday devo and class tonight.

He's HOME!

Tony and Sherri are home. Thanks to the elves (whoever you are) that brought the food and Christmas decorations. It is beautiful, and the food is great.

Due in at 12:45 PM AST

Tony and Sherri's flight got off late. It is expected to arrive about 12:45 in Anchorage instead of noon.

Coming HOME!!???!!

Lord willing, Tony and Sherri will arrive Tuesday (tomorrow) about noon at the address below.

Great Circle Flight Services
6121 S. Airpark Pl
Anchorage

It is an awkward time of day, but if anyone wants to meet them, the address is off of Raspberry road on the way out toward Kincaid Park. There is room to wait for them if you are so inclined.

This is a non-stop flight arranged through the Corporate Angel Network. This network pairs cancer patients in need of transportation to and from cancer centers with corporate jets that have vacant seats going that way. This happens to be a ConocoPhillips flight.

They have moved out of the RV park and are in a hotel near the airport for tonight.

Thanks to ConocoPhillips and the Corporate Angel Network for this service, and ultimate thanks to God who is the architect of everything good.

He has taken the first of his new chemo medicine, and hasn't had any bad reactions to it.

If God will allow it, he will be back in Alaska about noon tomorrow.

Tony hasn't felt well today, but is better tonight. With all the medicines he is on, they bother his system sometimes.

Tomorrow he is scheduled to start a new kind of chemotherapy. It is still a pill, but is different from the last one.

He and his Mom have tickets to fly home on Wednesday. Lord willing, they will be able to keep these tickets rather than change them for later.

He starts chemo Monday in Houston, but he has appointments with a doctor in Anchorage on Thursday, Friday, and Monday for the anti-vascular treatments. As the come-home date slips out, it at least becomes more firm all the time.

He still has the occasional episode with his arm, but the episodes aren't severe, and aren't very frequent. These are expected as he heals, and may last forever.

Not coming home Saturday : (

The oncologist wants to start his chemo on Monday, and watch him for a couple of days before he leaves. So he will be in Houston at least through Wednesday of next week. The oncologist said he wants Tony to start the medicine that stops blood vessel growth on the following Monday under the supervision of a doctor he recommends in Anchorage...so there is a glimmer of hope that he might actually come home next week.

As usual...nothing is constant except change.

Maybe coming home Saturday

He is feeling good, and should be dismissed from the hospital tomorrow. His oxygen levels are good without the need for supplemental oxygen. He is back to his fairly normal self. We are little concerned that his blood pressure has returned to normal, but continues to fall every day; however, the doctors are not worried.

The doctors are split on whether he should fly home right away or not. Some are saying it isn't a problem (mostly the men). Some are saying it is risky because of the recent pulmonary problem (mostly the women). Some are saying it will always be risky for him to fly, so fly now or fly later is all the same. I think it is going to come down to his choice, and his choice would be to board a plane straight from the hospital.

If he does come home this weekend, they would fly straight from Houston to Anchorage...non-stop if possible. He would like to stop and visit in Fayetteville, but the doctors are advising him to get home as directly as possible. I think there are still a lot of things that can go wrong, and they want him in travel mode as little as possible.

Let's pray that whatever the doctors and Tony decide, that it works out well. Pray for his Mom too, she will be a nervous wreck on the plane worrying about him.

Might be coming home at end of week?

The physical therapist and occupational therapist examined Tony today, and both were very pleased with his recovery. He is still sore in the chest area because the lining around the lung is irritated, and will be for a couple of weeks.

The oncologist still wants to try and get Tony back on the original plan of an anti-vascular medicine and a chemo medicine. It might be able to start in about 10 days, but he needs to talk to some other doctors before he decides.

There appears to be a good chance he will be discharged on Friday and allowed to fly home on Saturday. That is not a promise, but that is what the doctors are thinking at the moment.

As is often the case, we have something to look forward to, but little is certain or decided.

He has to be still for 24 hours following today's treatment, and there is some physical therapy involved before he can be discharged. The doctors are meeting today to plan out things. After that, hopefully we will have a new latest-estimate for when he can come home.

He has had the procedure to install the clot-catching 'basket' (I am sure there is a proper technical term for it) and is back in his hospital room. All went well according to his Mom.

Still improving

He is getting around his room fine...just has to haul a rolling pole and a bunch of wires with him.

Sometime tomorrow, they plan to install the basket to catch any blood clots before they can reach his lungs. It could be anytime tomorrow between 7am and 5pm.

He is doing much better today. He can sit up and move fairly comfortably, and can walk around some. His breathing and pulse are returning toward normal, and the oxygen tube isn't bothering him today.

An X-ray has found a clot in his leg too, so they have plans to put a basket in his leg to catch the clot in case it busts loose. We don't have any more info on the lung clot status.

One of the doctors thinks he can still return to Alaska late this week. Tony hasn't seen the other doctor yet to get his opinion.

Tony's spirits are much improved. Thank you for your continuing prayers.

He has improved a bit more. He is managing his pain well with medication. He is on oxygen which irritates him...he doesn't like having that tube under his nose. He is eating well.

The doctors will meet on Monday to decide what's next.

He has improved a little more. The specialist said everything is fine. We weren't there to quiz about what 'fine' meant, so we will just have to settle for for 'fine'. His pulse and blood pressure are coming back down toward normal. Pain medication is controlling the pain.

Sherri has rented a room in the hotel across the street. It is connected by an enclosed sky bridge to the hospital so she easily pop in and out as he wants to visit, rest, sleep, whatever.

Expectations were that he would be hospitalized for a couple of days. We don't know what impact this has on his return date to Alaska.

He is doing better

The doctors think he is past the worst of it. He is on pain medication because it hurts where the clot is. The blood thinners are working well. There is a chance the clot can move again and cause more trouble, but the doctors don't think it will. This is a common thing for cancer patients, so the hospital is very familiar with this.

He will see a pulmonary (lung...I assume) specialist later today. When the doctor said his lung was damaged, what he meant is that blood supply was temporarily restricted. We don't know at this point how bad the damage is or even if there is permanent damage. In either case, even if some lung tissue dies, the nurse says that won't be a long term problem...people live on one lung, and only part of one of his may be affected.

His attitude is improving, but last night was the low point of his treatment so far. Last night, he didn't care any more. He is heading back toward normal now, but isn't there yet.

This will change his cancer treatment plan. He can't have the treatment to reduce vascular growth for quite a while (whatever that means), but he should be able to do the chemo. He will have to be on a blood thinner for a long time (don't know how long).

If this had to happen, it is a good thing this happened now. It would have been much worse if he had started the medication to stop new blood vessel growth. It would have been worse if he and his Mom had been in the car on the way back to Oklahoma. It would have been worse if they had been on the plane flying home.

I thank God for his work. I thank God for your prayers. I thank God for friends. I woke up friends in Houston at nearly midnight last night, and they went to be with Sherri and Tony.

Serious trouble

Tony is in the hospital with a blood clot in his lung. Part of the lung is damaged, we don't know how much. This is a life threatening development. He is on blood thinners to dissolve the clot, but this is a critical juncture.

Please do NOT call Sherri's cell phone. She is low on battery and needs it for the hospital and doctors to contact her. Tony is severely depressed by this, and is at an emotional low.

Please do not try to get out where road conditions are bad. We don't want anyone getting hurt trying to get to the hospital. There is an ice storm in Houston, and Sherri is stuck at the hospital. Flights in and out of Houston are reportedly cancelled.

Please pray. Pray for his health, pray for the doctors, pray for Tony, pray for Sherri, pray for Randi, pray for me...please pray!

In the ER again

He is in the Emergency Room for pain in his chest, shoulder, neck, ...not sure about details. He is being checked for a possible blood clot in his lung since that is not uncommon with his type of tumor.

The ER is packed, so it may be a long time before we know more.

The Treatment Plan

Tony will be staying in Houston a few more days, but this isn't really bad news. It could be very good news. He expects to be able to leave Houston on Wednesday or Thursday, and be back in Alaska by Saturday or Sunday.

The tumor was very vascular (lots of blood vessels feeding it), so he is going to receive an IV drip medication every three weeks that will prevent the formation of new blood vessels. This is intended to starve the tumor so it can't grow anymore. He will also be on a chemo medicine (different from his past one) that should attack what may be left of the tumor. This medicine is oral, and taken for two weeks followed by a week off. This chemo medicine doesn't usually make you feel sick. He will fly to Houston every six weeks for a checkup with the doctors.

The phrase above, "what may be left of the tumor", is intentional because the doctor isn't sure if what is left is tumor or scar tissue. Even if it is scar tissue, there could be microscopic fingers of tumor left that you can't see during surgery or on an MRI.

He will start chemo, and get the IV drip on Monday, hang around a couple of days for observation of any adverse reactions, and then be turned loose to leave.

The main disappointment in all of this is he had plans to see his friends in Fayetteville on Sunday, and those plans are now scuttled.

Nothing new to report on the health front.

The following clarifies some past misinformation. At one point in the past, I had mentioned we were going to Houston to have a "special MRI" that could identify tumor from scar tissue, etc. But when a normal MRI was taken instead, I assumed that we had misunderstood something and maybe there is no such special MRI. It turns out there is such a test, but apparently the standard MRI was enough for the doctors to know what was going on. Anyway...just clarifying.

Tony had a minor numbness episode today. It was smaller than normal; it only affected below his right elbow, and only his pinkie finger completely, and it lasted only 5 minutes. He still felt 'not right' afterward, but a nap at home cleared that up.

They reported it to his doctor, but there is no action to take other than a little more anti-seizure medicine if he thinks he needs it. He went

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

No changes today. He still feels great.

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!

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 now...it 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.

Probably no update today

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

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.

Spent the night in the ER

He felt like he might have a seizure last night, so he went to the ER last night. A CAT scan shows things being about the same, but his brain is still swelling. They have increased his medications, and that has the swelling down again. This time, he felt something in his tongue and lips, but he never felt any muscle control problems, and his speech wasn't affected. He could feel pressure in his head.

This has accelerated the process with MD Anderson. They need to take another MRI in Arkansas, and then send all the scans plus a sample of the tissue extracted during surgery to MD Anderson. It looks like we might have an appointment by Tuesday at earliest even then.

He and his Mom are still at the hospital. I didn't talk with Tony, but his Mom is having a hard time with this. I plan to leave this weekend to go to Arkansas.

Still waiting...

If they haven't heard from MD Anderson by Friday, they are to contact the local doctor in Arkansas. The doctor has been in contact with MD Anderson; it is just a matter of waiting for an appointment.

He and Mom plan to be in Fayetteville where they have access to a doctor until they are assigned a doctor and appointment in Houston.

Waiting...

Still just waiting for an appointment in Houston. Long car rides, continual noise, and loud talking bring on a headache, but he feels fine other than that. He and his Mom are back in Fayetteville. He is ready to get to Houston and get started on whatever needs to be done.

Still waiting...in Owasso for now.

He and his Mom are in Owasso, OK for the weekend to watch a marching band competition. There is no news yet on when they might go to Houston. He still feels headaches coming on when he gets active, but keeps them away with some pain medication he was given.

His Mom says you wouldn't be able to tell he was sick if you didn't know.

No change

No change in news today. Just killing time in a hotel room. He didn't sleep well last night because the staggered timing of medication had him up until about midnight, then reawakened at 2AM for the final salvo. That isn't a very convenient routine, but it should be over after tomorrow.

Out of the hospital, and feeling good

Tony and his Mom are in a hotel tonight. With steroids controlling the swelling he acts, looks, and feels like nothing is wrong. He is on his computer gaming and chatting with friends.

Maybe not a tumor?

The doctors have conferred, and the prognosis has changed somewhat. The last doctor apologizes for "hitting the panic button" as he put it. The latest explanation is that this kind of brain swelling does commonly occur 3-9 months after radiation treatment. So just because there is swelling doesn't mean there is a tumor. However; the doctor does think there is some tumor mixed in with the post-operative healing (scar tissue) and radiation damage.

The plan is still to send him to MD Anderson. The expectation is that he will undergo a 'fancy' MRI that can distinguish scar tissue from tumor from radiation damage, etc. Basically, it should show exactly what is going on.

Your thoughts and prayers are still needed and appreciated...maybe they can turn this panic-button into good news down the road.

Sorry about the ups and downs on this. Sometimes I wonder if I should wait to post news and in that way even out the ride a bit.

He is feeling better

His Mom is with him now. He feels better now that he has been given steroids to knock down the swelling in his brain. He seems to turning more positive emotionally, but still isn't up to visitors. He is glad his Mom is there.

He wasn't surprised too much by news of the tumor coming back. He knew he didn't feel right again after he had felt good most of the summer, but the doctor kept telling him this is 'normal' and part of the healing process.

Clarifications

The MD Anderson Tony will go to is in Houston, TX. Hopefully he will have his surgery within two weeks. The doctor is recommending him for experimental post-surgical treatment since the tumor has overcome the standard treatments.

He has been withdrawn from school for this semester at least.

The tumor is back

The neurosurgeon says the tumor has grown back aggressively and is about 4x4 cm. He also sees significant swelling, and doesn't know why the other doctors haven't seen it. He is getting Tony an appointment with MD Anderson and says he will need surgery (the tumor is deeper in the brain this time) and probably needs to get in an experimental program. Sherri is leaving tonight to be with Tony. Tony is staying in the hospital. Sherri's parents are there. So is Randi.

I don't know anything else.

Headaches still

Tony continues to have headaches frequently, but they are in different spots instead of always in the same spot like before. He has also had 2 or 3 times when he thought a seizure was coming on, but it did not. All of this is since the increase in his anti-seizure medication.


He is seeing the neurosurgeon tomorrow to talk about what is going on.

Update from the Neurologist

The Neurologist says the proprioception event over the weekend isn't a surprise. The medication he is on takes time to ramp up when dosage changes, and it wouldn't have ramped up enough to have had any real effect yet. It will be a week or two before the increased dosage is fully functioning. He also said Tony's headache isn't unusual considering the time since his surgery and the significant increase in activity that college demands.

Some symptoms over the weekend

Tony said he had another brief episode of proprioception (what I was calling numbness) in his right arm on Friday, and a headache over the weekend. We have encouraged him to contact the doctor again.

Some clarifications for the better

The mixed interpretation of the MRI results has a little more explanation, and it makes us feel better too. The first radiologist saw nothing out of normal. A second pointed out some thickening of the brightness area around the surgery site. This could be tumor growth, but most likely is post-surgical changes and healing. As the tumor dies, it attracts the MRI contrast dye, and creates a bright spot similar to the way a tumor looks. That means we have something to keep an eye on, but it doesn't mean there is a problem.

The doctor said this is all normal, and something we will be dealing with for a long time. That is why he puts so much emphasis on seeing the patient on a regular basis. He can tell which way to read the MRI by looking at and visiting with a patient. He sees nothing but good health in his visits with Tony.

So I think we can take this as good news overall.

Back down from this morning's high

Tony got a call from the doctor after his appointment today. They want to schedule a followup MRI in six weeks because, after the appointment, someone (don't know who) saw something (don't know what) in the MRI that they want to keep an eye on. It could be anything including just post-operative changes in the brain as it heals, but it still needs watching.

Tony's Mom spoke with him, and he sounds okay with it, but it is kind of a shame...he was very concerned before the appointment, elated after, and probably somewhere back toward concerned again now. But I think there will be a little bit of concern always.

Great news!

The MRI results looked perfect. Nothing new...nothing growing. The doctor suspects the numbness is caused by drinking so much water as part of marching band, that it is diluting his anti-seizure medication. They have increased his medication level, and all is expected to be fine.

Thank you again for your prayers.

Results not until Tuesday

He had the MRI today, and will get results from his doctor at 9AM CST Tuesday.

He would like to go to the football game in Little Rock this weekend, but needs a ride since he missed the bus due to his MRI appointment. He could march in the pregame show, but not at half time. He missed a couple of practices while on chemo and he missed a couple of practices while setting up and getting his MRI appointment, so he doesn't know the half-time routine well enough. Marching didn't mix well with the chemo near the end of the week.

Something to worry over...

His right arm went a bit numb yesterday during church and last Wednesday during church. His scheduled MRI has been moved up to tomorrow at noon.

If you are willing, we would appreciate some prayers that this turns out not to be serious.

Chemo week over

The first week of chemo in college is over. He didn't feel his best, but didn't get sick and he kept up with activities.

Thanks for prayers you offered.

Must be doing okay

He called asking the name of a friend in Fayetteville. He is playing something called bigger and better, and sounded in great spirits. The school week must have gone okay.

One day down...

He made it through Monday night without getting sick. Haven't heard about Tuesday night yet.

First day of school and chemo too...

This is the first week of school, and also the week he takes his chemo pills this month. The first pill is tonight (Monday night).

Lets pray that he doesn't get sick at school. If he does, he will have to lean on his roommate, instead of Mom and Dad, for assistance. His roommate is the same as previous years, and he has been coached on what he might be in for.

Doing great...moves into the dorm Saturday

He had an appointment with the oncologist. The doctor says he is doing great, and there are no restrictions on his activities. He is already looking forward to volleyball, soccer, softball, etc.

His hair is almost all back. It is still blond in spots, but it slowly turns dark as it grows out. The scar still shows when his hair is short, but I think longer hair will mostly cover it up.

He has been referred to a local primary care physician to treat any ills that turn up during school and coordinate with the oncologist as needed. They plan an MRI at the end of September...part of the periodic monitoring program.

Tomorrow we move him into the dorms to start his sixth semester in college. From here on, it might be a while between posts since we likely won't get nearly so much information on him while he is in school.

Back to school

He flies back to college tonight!! He seems to feel perfectly fine.

He feels pretty good now

He still has a little discomfort, but you wouldn't know it from the way he acts. The pain must be down to the kind of thing you notice when you think about it, but forget about if distracted by something else. I guess I will consider this little incident over unless it flares up.

Back home and okay

CAT scan and blood work showed nothing out of the ordinary except signs of a slight infection in the area where he hurt. The pain has subsided almost back to normal, so he has been discharged from the ER and is at home. The good news is there is nothing obviously wrong. The bad news is he wishes we had positively identified what it was.

He went in because the pain had been constant for 36 hours and made walking difficult without bending forward. Now he is walking normal but still feels some residual pain.

Feels bad...going to the ER

We don't know if it is related to any of the cancer treatment, but his stomach started hurting yesterday during church, and he still feels bad today. His Mom is taking him to the emergency room to see what's going on.

Still doing well

He still feels a little nauseous with the chemo medicine, but the new anti-nausea medicine knocks it down enough that he can sleep and doesn't get sick.

Doing GREAT

Keep up the prayers. He is doing great this week. He hasn't gotten sick and has barely felt ill at all.

There may be a pattern that Tony recognized just the day before pills this week. The two weeks he didn't get sick were in Arkansas and London when he was drinking bottled water. The two weeks he did get sick were at home drinking well water. So we tried having him drink bottled water here at home, and so far so good.

Prayers or water or both...we will take whatever works.

Chemo week starts tonight

Tonight he takes his first chemo pill of the week. Let's pray that he can avoid getting sick from it this time.

Even the previous bald spots appear to have hair, and the blond spots are starting to turn to his normal brown.

His neurologist says he is doing very well, and just wants to see him twice a year. This doctor read the last MRI results, and agrees that the 'hot' spots that showed up are just signs of the radiation damage healing around the tumor area. So that is two doctors say the MRI is good and one radiologist that pointed out concerns. I vote for the doctors to be right.

Chemo next week

His blood work this week came back good, so he is cleared to do another week of chemo pills next week. He has lost 20 pounds from his peak weight, but is still 10 pounds above his pre-surgery weight. He looks good at this weight, so I kind of hope he keeps the 10 pounds.

He went bowling with friends last night, and plans a road trip this weekend. He is feeling good.

Back from Camp

He is back from camp. He had a great time and apparently participated fully in all the events (shaving cream war, water balloon fight, volleyball, ...everything). He sounds energetic, and his hair is starting to fill in nicely.

Back to camp

He left for another week of church camp. He says he feels less tired now that he is nearly completely ramped off the Dilantin. He only has a week or two left before is off it completely and only on Keppra.

Back from camp. Tired but not too much.

He is back from church camp. He was obviously tired, but so is everyone after being a counselor for 4th-6th graders for a week. His only talk was the normal highlights and travails of camp, so there apparently were not any problems with medications.

He will rest up today, and go back to camp next week. This week he will be in charge of recreation events and equipment. The job isn't nearly as demanding as a counselor job, so he is looking forward to a much less tiring week.

He is at church camp this week

He is a counselor at church camp this week. I probably won't hear any news on him until Friday or Saturday. The campers are 4th-6th grade. He has been feeling good with the new anti-nausea medicine.

He has hair growing back just about everywhere now. He got a haircut hoping it will come in fairly uniform this time.

He is doing good now

He is feeling great today. He slept well last night, and the new anti-nausea drug (Zofran) is doing good...not to mention a few helpful prayers. He is getting ready to go out to church camp for the evening.

Thank you.

Feeling better

He is feeling better this afternoon/evening. He hasn't had to take his anti-nausea medicine since 4:30 AM, so that means things are settling down.

MRI Results OK, but a rough week

The MRI results appear to be good. The radiologist thinks there may be something growing around the edges of the tumor site, but the doctor says it always looks that way at this point in the healing process. He says the MRI is showing that healing is taking place.

This has been a rough week medicine-wise. This is his week for chemo this month, and he was really sick Monday and pretty sick last night. This is the third round of treatment, and we were warned that it can get rougher each additional round.

Thanks for your prayers...there is plenty to pray for.

Change in medicine

He will be ramping down off the old seizure-prevention medicine faster than planned. The last blood test results just came in, and the medication level was off-the-charts high. That is one of the reasons to get off this medication...even with taking the same dosage every day, the actual amount protecting him in his bloodstream can be too high, too low, or just right. We will skip the first two weeks of ramp down which should make this a three week transition.

He had the MRI today, but we won't know results for a few days.

MRI today

Today he has an MRI appointment to see if there is any remaining cancer. Please pray that the cancer is gone.

New medicine starts today.

Today he started his new seizure-prevention medicine. Over the next five weeks he will ramp the new medicine up while he ramps down the old. The new medicine isn't supposed to make him as tired, and it has much fewer potential long-term side effects. The main warning is it might make him irritable to the point of being hard to live with.

He has lost some of the weight he gained while on the steroids, so they might adjust his chemo pill dosage for next week. The dosage is sensitive to body weight.

He stayed up to see the midnight showing of Transformers last night. He still feels fine...actually very good.

Biking today

He has fallen back into his normal routine of staying up late and sleeping in. The time zone change from the UK temporarily had him going to bed in the late evening (instead of wee hours of the morning) and waking up in the morning (instead of early afternoon).

He and a friend went off to ride bikes tonight. He really is acting like he feels better than he has at any other point during treatments.

It look like he is starting to get wisps of hair on his head over the tumor area. Hopefully that means it will all come back eventually.

Mountain climbing today

He left with a friend to eat and then climb Baldy (a mountain on the edge of Eagle River). It is more of a hike than a climb, but it is a workout.

He is home

He is home from Scotland. He got in today at 11AM, and he looks good. At least to our eyes, he seems to have developed more stamina and he just seems to feel better than when he left. He had a wonderful time, and talked non-stop about the trip on the way home.

He was tired from the flight, and from a very short sleep the night before, but he intended to stay up to get back on the local schedule. That lasted until about 4:00. He laid down to take a short nap, and he is still solidly asleep. He tried to wake up for evening worship, but was so sleepy he decided to go back to bed.

He has regrown hair everywhere except in a softball-sized area...maybe a bit bigger...directly over the tumor area.

He had an unexpected encounter there. It occurred as they were playing with one of the hosting flute groups in one of the concerts, and they were changing positions for the next song. A young male flute player was jostling by to get to position when he asked Tony "brain tumor?" Tony said "yes", and the guy said he had an astrocytoma removed 4 years ago. They didn't get to talk any more afterward, but it was cool to see someone else doing well long after a similar situation.

He will stay on the same seizure-prevention medicine this week, but next week they plan to switch him to one that is easier to keep in the effective range and isn't supposed to make him tired. Let's hope that works well.

Nothing new

Haven't heard anything new. I am sure he is still having a good time, but probably looking forward to getting home...but then again maybe not.

In Scotland and having fun

He called and left a message today saying he feels good and is having a wonderful time. He is at the home town of the Bay City Rollers (a pop musical group from the 70's for those of you who are clueless about the fine arts ; ) but said memorabilia (for his Mom) is hard to find after this many years.

We finally got to talk to him

We finally got to talk to him yesterday. He is having a great time. He feels really tired, but is thoroughly enjoying the trip and feels good.

He said he is really tired (it couldn't have anything to with the fact that he is on three medicines all of which make you tired and he has had jet lag), and he is having to take an additional dose of the anti-nausea medicine. He thinks that is necessary because he is active in the morning on the trip, and it was likely he slept through it at home since he slept in more here.

One of the Mom's on the trip said he is tired, but so is everyone else. If she didn't know better, she wouldn't know he was on chemo medicine.

He is doing good

He texted to say he was doing good and feeling fine. It sounded like he really was good and not just toughing it out. They are still playing 'tourist' in London.

Doing okay

He texted to say he is fine. One of the Mom's texted that he is doing okay, but the chemo is upsetting his stomach some. It doesn't sound too bad, but probably does knock off some of the excitement. I think they saw the changing of the guards today.

He is in London...or should be anyway

He should have had is first day in London today, and big tourist day tomorrow. We haven't heard from him yet, but that is typical...he doesn't call home much. I guess we will assume he is there and having a good time.

His first chemo pill will be Monday night, so let's pray that he doesn't get too sick.

Blood work results okay

His blood results came back normal except his white count was a skooch low. Skooch was actually the term used by the doctor, but I have yet to find the definition of skooch in the medical dictionary.

This clears Tony to do the next round of chemo medicine. He will start the next five-day set of pills on Monday.

He leaves tomorrow for two weeks in London and Scotland with the flute choir.

He played lots of flute today

He practiced flute with the flute choir for about three hours today preparing for the Scotland trip. He said his lips were quivering and his arm and fingers were tired, but what can you expect when he hasn't practiced more than 30 minutes at a time since January; and only a few days at that. He is in for another three-hour practice session tomorrow.

His hair is coming back lots now. Close to half his head has visible, but very short, darkening hair growth. Just the part in the back top is still clear.

He leaves Saturday for the Scotland trip, and starts his week of chemo medicine on Monday in London. We could use some prayers that he won't have any significant side effects while he is there.

All seems well

He has been riding his bike, playing disc golf, and spent the night sleeping out in a tent at a friend's graduation party. Tonight, he is at a hockey game.

We can see a hair line of darker growth starting to form. It isn't anywhere near long, but something is coming back.

Blood tests high but normal

The blood test results came back in the normal range, but near the high end. The doctors are trying to get him in the middle of the range, so they may adjust his medication down. We hope they leave it alone since he is getting ready to go to Scotland after next week. Last time they tried to adjust him down, he ended up being too low on the next test, and we don't want him too low while traveling.

Still waiting for results

Yesterday was nice, and he climbed most of the way up Flattop mountain with his sister and a friend. He got pretty winded, but that should help increase his endurance.

We still don't have results of the blood tests to see if we need to adjust medication.

Waiting for results

Results of the blood tests should be in tomorrow. Medication levels will be adjusted as necessary depending on the results.

He has been riding his bike, and played disc golf yesterday. Today he is playing ultimate Frisbee with friends and plans to attend a performance of the flute choir he is going to Scotland and London with.

Bike ride and band

Today he went for a bike ride and played in a band concert. The junior high invites alumni to play with them for a couple of songs in the final concert, and he participated.

Tomorrow he gets some blood tests done to see if medication levels are where they need to be.

Slow starts but finish strong

He seems to wake up kind of groggy, but that gradually lifts until, by evening, he seems back to his usual energy. Last night, we dropped him off about 9:30 to play tennis with friends. During the day, he did quite a bit of homework for the Western Civilization class that he is taking by correspondence.

He has decided not to play softball this summer. He figured out that with his trip to Scotland and London with the flute choir, his two weeks at church camp, his leaving for college in August, and a week or two he expects to miss for medical reasons, that he could only play in 4 or 5 of the 16 game season; hardly worth the $55 player fee.

Biking, Disc golf, and Hair

He went for a 4 or 5 mile bike ride, and played disc golf. He isn't feeling quite well, but that is probably the antibiotic he is on. The bike ride seemed to tire him out...he still has quite a bit of endurance to build back up.

We are seeing what appears to be the beginnings of hair growth all over his head. It is all white peach-fuzz right now.

Doing good

He is feeling good. Since last post, he has played Disc Golf, and practiced softball with plans to play on Thursday. Tonight he is going out with one of his friends.

He found out he can't quite do without the nausea medicine during the week he takes the chemo medicine. So long as he takes it though, he feels good.

Tomorrow we have plans to disc golf again and perhaps ride bikes somewhere.

He is feeling good again!

He is feeling good now. He would have played softball tonight, but the anti-nausea medicine he takes along with the chemo says to avoid the sun and overheating. So he can probably make ball games for three weeks and then maybe miss one.

He is going to try and go without the anti-nausea because we may have figured out how to control it but eating small amounts all day to keep his stomach from being empty.

He met with a neurologist and oncologist today and both are encouraging him to go ahead with plans for going to Scotland and London at the end of May.

Thanks for your prayers and please keep them up...they are working.

He is feeling good this morning

He seems to have had a good night. Last night he sprang back to alertness about 7:00PM after sleeping most of the day. He slept well through the night, and still seemed to feel good this morning too.

Maybe we have turned a corner? Maybe your prayers have worked!! Thank you!

He is really tired

The doctor gave him an antibiotic for the low-grade fever (100.7 deg F). Hopefully that will take care of it, and we can get through the rest of the week without any more surprises.

He is really tired, and falls asleep easily. But when he is awake, he seems perfectly fine.

Better, but not good yet.

Last night went much better. He slept through the night. Either the nausea medication worked or perhaps the snack before bed worked (a friend said keeping a little food in the stomach at all times seemed to help them through the chemo nausea).

He is running a low-grade temperature, so he has a doctor appointment today to check things out. He is also feeling much more tired than he has before.

I thought the hard part of all this was over (surgery, radiation + chemo), and that it would be an easy coast from here. Apparently I was mistaken.

Thanks for any prayers you can offer.

First round of followup chemo...not so good so far

He took his first followup chemo pill last night, and got very very very nauseous about 4 hours later. The pill is about double what he had taken during radiation treatments, so we expected some sickness, but nothing that would prevent normal activities at perhaps a reduced pace. Last night's reaction definitely would have prevented any normal activity.

The doctor will prescribe some medication to help with the nausea, and see where we go from here.

He is Home!

He got in a little early Thursday night, and had a group of about 20 meet him at the airport. Thanks to everyone who met him!

Friday, he played Frisbee golf in Peter's Creek park, and was song leader and chaperon at an overnight lock-in for the high school church group. Tonight he went to a choir concert his sister was in, and is out with his friends now. He won't be allowed to drive until October or later, so he will be looking for rides once-in-a-while.

From here on (up to a year or two), he will have a four-week cycle of chemo treatment. The cycle is five days of treatment followed by 23 days off with a blood test during that time to monitor his health and medicine levels. The chemo dosage is higher that it was during radiation, so there may be some side effects he didn't have before. There will also be an MRI near the end of summer.

Blog updates might be less frequent now. Maybe once a week or so...definitely when we get blood test and MRI results, and as we see how the new chemo dosage works out.

Thanks for following his progress, and thanks a bunch for your prayers.

HE IS COMING HOME!

The doctor said the MRI scans show no signs of any remaining cancer. He will start a maintenance treatment of chemo medication one week in every month for the next year at least.

He and is Mom are driving back to her parent's house tonight and to the airport tomorrow. If all goes well, they should be back in Alaska 11:07 PM Thursday. Woo Hoo!!

All clear from the eye doctor

Today, he saw the eye doctor. The doctor saw nothing unusual, and expects the additional 'wateryness' of the one eye to go away over time.

He is out playing Frisbee golf again. Tomorrow is his can-I-go-home-now doctor appointment.

MRI today

He had an MRI today, and we will get the results Wednesday. If all is clear, he will be turned loose to fly home on Thursday.

A fun day

Today he played Ultimate Frisbee again, helped with a crawfish boil for the college church group (I hear he didn't eat any), and watched a movie with friends at the apartment. Tomorrow he has designs on playing volleyball.

Now that he can be active again, he appears to be making up for lost time.

Can anyone recommend a doctor?

We need to find Tony a good primary care physician immediately when he is back in Alaska. We have never really had a primary doctor, but instead kind of floated around. Now we need to get established with one who will know what is going on if we have any problems this summer.

Do any of you have a recommendation for one?

If you do, you can post a reply here or email me at ncollins@mtaonline.net

Thanks for your help.

He is playing hard now

He played Ultimate Frisbee yesterday, and thought he would be sore today, but he must not be too sore...he is going to play again today. For those who may not know, Ultimate Frisbee is sort of like Soccer, but with a Frisbee, and you can't run with it. There is lots of non-stop running, and it is lots of fun. He can do it now that he is allowed to run.

His medication has settled out to where it should be (according to blood tests), but a bit toward the high side. Once he is settled back in Alaska, we have instructions to reduce it a little bit to get it more toward the middle of the range.

Good news from the oncologist

He saw the radiation doctor today. The doctor said his CAT scan from the other day shows no signs of cancer, and he doesn't see any reason that Tony can't come home on the 30th. He still has an MRI on Monday to be reviewed on Wednesday, but so far so good.

He still has an appointment with the eye doctor on Tuesday because his left eye is watery. The oncologist doesn't think it is related to the treatments, but he can't rule it out either. We are hoping he got something in it, or rubbed it wrong, or something else easy to get rid of.

Preparing to leave

He is giving the devotional tonight at RFC and taking cookies that his Grandma made.

He and his Mom are packing up the apartment in preparation for leaving next week. Some of the less-used stuff has already been sent back to his Grandparents in Oklahoma.

He has an appointment next week with an eye doctor. He thinks his left eye isn't as good as it used to be, and that is one possible side effect of the radiation treatments. Next week is also when he has appointments to see how effective the treatments were.

Your continued prayers would be appreciated.

He went bowling tonight

Yesterday, he played with the band at the Red and White scrimmage football game which is a recruiting tool for new students. Apparently it is a huge event where the football team scrimmages, and lots of fans and prospective students show up. It is even televised.

At the event, he met an incoming freshman flute player who is also a member of the church. That makes three flutes in the band that are from church.

After church tonight, he went bowling with friends.

All seems to be well.

Bicycle riding

He went for a bicycle ride yesterday, but it was a short one because his brakes were rubbing too much to go far. He needs his wheels trued. He also went to a devotional last night.

He might be in foul mood because his computer won't boot up. It is in the shop getting looked at.

Nothing else really new on the health front. He seems a little tired, but keeps on going.

Still busy, but napping.

He played flute for the university 'Conducting' class this morning, then took a nap. Now he is playing Frisbee golf on a pretty day.

He cooked out today

He was running around with a friend today, and cooked out for the college devotional tonight. He is still yawning which seems to indicate some fatigue, but he isn't letting it stop much. He does find that a short nap is helpful.

Nothing new

He is tired, and playing video games. They hope to talk to the doctor today about this weekend's event, but haven't been able to yet.

It is just a medication adjustment

The CAT scan shows everything to be okay. Blood tests show he needed a medication adjustment. Today was the last of the steroids, and as the steriods ramped down, they needed to crank up the other medication.

Sorry for the scare.

He is on the way to the Hospital now

His arm went numb, so his friend Louis is taking him to the hospital ER. His Mom will meet him there. We aren't sure what this means, but it wasn't expected.

Prayers please!

He is doing homework

His maternal grandparents visited today. Plans for Frisbee golf got rained out, but he is working on his correspondence class.

He has plane tickets to come home on April 30th following his last doctor checkup on the 29th. It is a bit of a gamble booking the tickets now, but the doctor expects he will be well enough by then.

He is tired, but having fun

His concert on Sunday was a fun affair. He and another student were the running-gag for the concert. Between the individual performances, he played hide and seek around the auditorium hiding from the seeker. They played on their flutes during the 'chase' things like nyah nyah nyah nyah NYAH nyah, round-the-mulberry-bush, etc.

He is definitely feeling tired now, but doesn't want to admit it. He yawns a lot when sitting around, but he did go play Frisbee golf on a fairly cold day today.

Playing flute tonight

Besides worship, he is also playing in a flute choir concert tonight, and putting together the program for it.

We may be seeing the effects of his ramping down off the steroids. He slept through his alarm today, and he isn't fidgeting when he sits still like he was.

He is camping today

The college group at church, Razorbacks for Christ or RFC, are camping overnight near Fayetteville. The doctor cleared him to go since they aren't far from town.

He didn't ride his bike today, but he practiced his flute for Sunday's performance, and reserved the music hall for the group practice on Saturday.

The doctor believes that any tiredness he might have will be gone by the end of April. That is earlier than I had thought it would be.

His first day after treatments

He celebrated by getting the hottest lunch possible at A Taste of Thai. Truly spicy-hot food has been taboo during the treatments.

He is going camping with the RFC this weekend and is greatly looking forward to that. No bike riding today...it is raining.

Treatments are DONE!

His last radiation treatment was today. The last chemo pill is tonight. Tomorrow he drops from 1/2 a steroid pill twice a day to 1/2 once a day. Then 1/2 on the 7th, 9th, and 11th. Then no more. He has gained quite a bit of weight due to an increased appetite and reduced activity. Once the steroids are gone, his appetite should drop to normal. He plans to restart more activity tomorrow with a bicycle ride.

Today he is enrolling for the Fall semester, and practicing flute for the April Fools concert (being held on Sunday the 5th oddly enough) put on by the university music department.

One More Day!!!!!

He was treated earlier today (10:30 instead of 1:00), and really liked having the earlier time. He bought a couple more Frisbee golf discs the other day, and of course had to go use them today.

We heard from another brain tumor patient who confirmed that you tend to feel pretty good during treatment, and then really tired for a few weeks after the steroids are taken away.

He washed his car on Sunday. One of the things we had noticed over the last year is that he didn't keep his car clean like he used to...maybe that is getting back to normal.

Tomorrow is his last day of radiation and chemo.

He is itching to ride

He slept soundly from midnight to 9AM last night. This compares to the restless 6 hours of sleep he was having earlier in the treatments.

He had a normal treatment today with no ill effects. His grandparents brought down his bicycle because the doctor told him he can ride it the day after his final treatment. He plans to be on it Thursday morning.

Two more treatments to go.

A quiet snowy day

Not much to report today. It sleeted and snowed, so he stayed in and watched TV quite a bit. He caught a lacrosse game that went into 7 overtimes (or innings or periods or whatever it is called in lacrosse).

He got outside early today

He played Frisbee golf at Bella Vista this morning (instead of Fayetteville in the afternoon), and just made it back in time to grab lunch before his treatment appointment. The Bella Vista course is much longer than Fayetteville's. He feels fine after treatment, so I guess all the rushing around before didn't hurt.

He is playing games on-line again, and may be quite a bit this weekend since they expect to be snowed in.

If you are inclined to pray, you could ask that he not feel too fatigued once we start ramping him down off of his steroid medication after his last radiation treatment. Only 3 more to go.

A busy afternoon

After treatment he did his usual Frisbee golf, went to hang out with his roommate, and then met some friends somewhere else. It was a cold day, so he wore his Feed Me sock hat instead of a baseball cap.

Only 4 treatments to go.

Info from the doctor today

We found out today that once the radiation is over, we need to be ready for him to get really tired. Apparently the steroids that control swelling also keep him amped up. Once radiation stops, they will back off on the steroids, and the doctor wouldn't be surprised if he slept 16-18 hours a day for the next month or so.

He doesn't think he will get tired...but we will see. He did go play Frisbee golf today.

We also thought we might leave him on his own for a few weeks after treatment, but the doctor did not encourage that. It might be boring, but it is still important to have someone there. So I guess one of us will be in Arkansas for at least another 5 weeks.

The treatments have changed a bit

He said the last seven treatments are different. They are focused smaller (just the tumor area plus a little bit) and there are more separate shots.

He still feels fine. Tonight he went to the youth devotional and was playing Call of Duty when I called.

6 treatments to go!!

Still going well

His Mom and I think the treatments are causing some fatigue because he is going to bed earlier and sleeping longer. However; he did go to play Frisbee golf today, so it can't be too bad. He watched TV last night and was playing Call of Duty today.

Taking it easy today

Today, he took it easy and was watching a movie when I called. Yesterday (or today...however you look at it) he was up until 4AM with the birthday party and subsequent cleanup. He may not admit it, but he is a bit tired...who wouldn't be? He had an awful lot of fun though.

Only 8 treatments left to go!!!!!!!

He is having a blast today

He is having a blast at a birthday party for three of his friends. His Mom can't stand to watch him shoot and rebound a basketball, but he seems to be taking it easy and isn't getting involved in the games...just around-the-world, HORSE, etc.

The doctor said he will stop taking the chemo medicine once the radiation is done (the last treatment is April 1). At the end of April, there will be a CAT scan and MRI. After that, it will be decided what chemo is needed from there on. It could be nothing, or it could be up to a year more.

He is supposed to be taking a multi-vitamin full of B vitamins, but he hasn't because they have bothered his stomach. He is going to try some pure B12 since that is supposed to help combat fatigue.

Thanks for your support!

Some fatigue has started

He says he feels a little fatigued, but he still went to play Frisbee golf on a cool breezy day. He says he feels better when he gets out to do something. He is going to bed earlier to help combat the fatigue, but he may need to do more.

He is a little tired

He is feeling a little tired and starting to go to bed earlier and wake up later. The combination of continued radiation treatments, and lots of outdoor activity (the weather has been glorious) may be a bit too much. He was having some dryness in his throat for a couple of days, but that is gone now. It was probably related to some seafood he had those two days.

He has signed up for a correspondence course, so that should give him something to study for awhile.

He is feeling goooood!

He can laugh out loud now without it hurting his head. He says he feels better than he has since the headaches started last March.

Good news from the doctor

Besides his treatment, he saw the doctor today also. The doctor expects his hair to grow back quickly once the radiation stops. He also doesn't expect much skin peeling afterwards because of his age (being young has its advantages). But the doctor did ask him to wear a hat outside so he won't get a sunburn on his newly-bald head.

He left to play Frisbee golf on windless and sunny 65 degree day.

Tomorrow, he will sign up for a correspondence course through the university. Completing it will allow him to take a course he needs to take in the Fall.

He had a fun weekend

He enjoyed a fun weekend hanging out with his roommate and their friends, then drove back to Fayetteville for evening worship. He is still feeling fine.

I haven't asked in awhile, but please pray (1) that this treatment will take care of the tumor completely and (2) to thank God for taking such good care of him so far.

Not much new

He drove to Tulsa today for some time with his roommate and roommate's family. Not much to say. Just same old stuff.

He is doing well

He worked out this morning on a stationary bike. I don't think the weather was good for Frisbee golf.

Again, he was not tired after his Friday treatment. He has started going to bed earlier on Thursday nights and eating before Friday treatments, and that seems to prevent his getting tired. The other weekly treatments haven't caused any tiredness yet.

Even though he is not enrolled this semester, he has been invited to play with the Arkansas University flute choir in their April 1st concert. The school has been very good at keeping him involved in the program.

Nothing new

Treatments purr along as normal, and he still feels fine. He has started signing up for his dorm room for the Fall semester.

He's bald now

He lost enough hair in enough places (and unevenly) so we shaved it all off today. He got tired of shedding every time he turned around.

He had his treatment as normal, played Frisbee golf, and went to the Tuesday devotional.

More of the same

He had his treatment today as usual with no tiredness or other side effects. He has driven off to join a friend in a round of Frisbee golf.

He woke up with a bigger patch of missing hair. I guess he will lose a bit every day for awhile.

He has found out, through a friend, of another 20 year old with a brain tumor. I think the two plan to start corresponding.

He lost some hair this weekend

Saturday, he lost a patch of hair. The patch is a bit bigger today; a little bigger than a couple of postage stamps one above the other. The doctor had said to expect this 2-3 weeks into the treatments, and we are at 2.5 weeks. Each day's treatment is composed of 5 different radiation shoots (shoots probably isn't the technical term), and 3 of the shoots are pointed at the spot now losing hair.

We think he is disappointed that he is losing hair, but he says it doesn't bother him when we ask. He has taken to wearing his hat to minimize the questions and stares.

He had a fun weekend. We were out of internet contact (at his grandparents) but he got to play frisbee, catch, basketball, and other stuff with some of his cousins. Nothing with contact, but a little bit of running (to catch bad throws) and plenty of time outside.