The schedule

Sorry I haven't posted in 11 days, but there was really nothing to write about. However, we now know (sort of) what's going to happen with Karl this week.


Yesterday, Karl was taken to the Charlton Building downtown where he was basically shrink-wrapped to keep him immobile and then marked for the Mayo Clinic's version of the cyber knife. Apparently this is new technology they developed three years ago. Anyway, on Thursday he will have this procedure done, not only on the small tumor they found on his third lumbar, but on a minuscule spot the radiologist missed on his fifth lumbar. The oncologist caught it and said he didn't know what it was, but because they were doing this focused radiation anyway, they'd get it now. He went on to tell Karl that this radiation offers him a different treatment regimen because as long as they catch these tumors early, they can zap them before they get a chance to spread.


Anyway, they expect the procedure to last 30 minutes, although prepping him may take longer. They expect he will be a bit tired afterward and will return him to his hospital bed after the procedure for observation, but expect that Karl will suffer no ill effects.


Karl is doing very well in terms of strength, appetite and wound healing. In fact, the physical therapists said he wouldn't require rehab down on the third floor as previously determined. They may actually discharge him this weekend! Randy is on standby with Ken Thomas' van and if that's the case, he'll make the journey to Rochester to fetch him.


He has been test-driving mattresses and has determined the sand bed to be most comfortable and well suited for his condition. It moves for him and there is no pressure, which gives him total peace of mind and allows him to sleep and ergo, heal better. They've told him the air bed he's currently on is one in which he'd have to move frequently to avoid more bed sores, which really takes him back to square one as far as he's concerned. Obviously, we're hoping he gets the sand bed.


Karl and Mom had a surprise last weekend...Rodney and Terri Partridge popped in and spent the afternoon. I'll tell you, that Partridge Family...well the theme song lyrics say it all. "A whole lotta love is what we'll be bringin'. We'll make you happy!"


This is a good segue into a conversation Mom and I had with Karl recently. He mentioned that every Karl/Carl he could think of on TV and/or cinema is usually less than brilliant and wondered why Mom and Dad had named him that. Case in point: Carl, the gopher-hunting crazy man on Caddyshack. Then there's Karl Childers from Sling Blade, who was brilliantly played by Billy Bob Thornton. This movie is filled with great quotes and Karl (Hamilton) and I took the opportunity to find some soundbites and quotes and repeat them to Mom. Of course, Karl's favorite was, "You ought not done that to your boy, umm hmm." Mother was groaning, knowing she'd be hearing that frequently. Here's a classic Karl Childers' soundbite: http://www.moviesoundscentral.com/sounds/coffee.wav





Karl Childers from Slingblade


I'm not sure if there will be a Karl update after Thursday since I may be without the Internet until the 12th. I have given Karl specific instructions about how to update the blog, but it's going to be up to him.

Until my return, may you always walk in sunshine. May you never want for more. May Irish angels rest their wings right beside your door.

Beannacht a lan,

Kerry

Whewwww!

They came and got Karl for his PET scan this morning at about 7:30. We were waiting for him when he got back in his room around 11 a.m. He said the actual scan itself didn't take much time. He was tired and in pain from the movement, but his nurse Julie got him hooked up to his IV where he could hit the PCA button.

Shortly thereafter a physician's assistant on the medicine team came in and told him his liver enzyme numbers were declining. He was cautiuosly optimistic and wanted to see it continue to trend downward. If the numbers come in lower tomorrow, they will know they probably took away the correct antibiotic. Later on, Dr. Gomez came in, smiling and reiterating the same news. He said he thinks they figured it out.

Then we asked Julie if the PET scan results were back. She reported that they were, but she couldn't divulge the information. She put in a page to Dr. Brogan and asked that he come in and tell us the results. That was at 1 p.m. We were on pins and needles until Dr. Brogan showed up at 4:30. He delivered very good news.

The cancer has not metasticized. He said they expected that would be the case. He also said there were no remarks about the kidney mass on the reading by the radiologist and there was no uptake of dye. However, the concentration for this scan was on the spinal tumor. They are using the scan to map the radiation cyber knife. He said they use a lot of complicated mathematical calculations to program into the machine based on the measurements they take from the scan.

Dr. Brogan used a bag of popcorn on Karl's bed-side table to demonstrate. He pointed to a piece of popcorn in the middle of the bag and said they use multiple angles to beam radiation at the target kernal. Alone, the beams are weak so they don't destroy good popcorn. However, if they are all pointed at the same kernal, it will be destroyed. We were all nodding our heads like we understood. Then Karl said, "So you mean I won't be able to eat popcorn after this?" Dr. Brogan, put his head down, had a very wry smile, looked back up and said, "Perhaps I should have used broccoli as an example." And we all laughed.

Dr. Brogan's best guess was that Karl would have almost another week here on the 8th floor to continue his plastic surgery healing. Then Karl would receive the cyberknife radiation on Thursday or Friday of next week. He'd then be shipped down to the 3rd floor rehab unit the following week. He'd spend about a week there then be released. So, now we're shooting for a Labor Day release. Again, that's the best guess.

Regardless, we are thrilled and relieved about the news today. As Dr. Brogan said before he left the room today, "This sure turned out to be a longer stay than I figured, but I think it was good thing." We couldn't agree more, Dr. Brogan. We couldn't agree more.

Love and blessings,

Kerry

A Phew Photos

I don't really have a lot of new information to share, but Karl's PET scan is tomorrow and we're praying the tumor is very localized so they can map an easy cyberknife radiation course for him. He will probably have the scan sometime before noon, but we're not real sure.

Karl's liver enzymes are still elevated. Doctors are pretty sure they will plateau and then begin declining. They think his liver is having a reaction to Tylenol and/or one of his antibiotics, but it could take 3-5 days for it to decline. If it doesn't they'll take other antibiotics away until they come up with the culprit. I asked if we should worry and doctors said we shouldn't.

We've also been told they may move Karl down to the third floor rehabilitation area next week. He'll need some stretching and exercising before he's able to come home. I've heard release dates ranging from next Friday (doubtful) to the first part of September. I'm sure the PET scan will give us more answers, but I doubt they come before Monday. Regardless, the move down to the 3rd floor is a move in the right direction.

Now, rather than writing anything else, I thought you'd like to have a look around Karl's room and see the wonderful nurse he's had the past few days, Jenna. She is a sweetheart! Then again, the entire nursing staff is wonderful and treat us all so well.

Love and blessings,

Kerry







Karl's nurse several days this week, Jenna.

















































Mom and I went to the Mall of America yesterday for a few hours. It's huge!

Pure Seduction

Shortly after I hit "publish" on yesterday's post, Dr. Brogan came in to explain and discuss a few things. First, the PET scan scheduled for Friday will be used primarily to map where the cancer is on Karl's spine and determine the intensity and frequency of the radiation used during the cyberknife procedure. Until that's done, we really can't plan physical therapy or a trip home. Second, Dr. Brogan thinks Karl will need physical therapy and thinks maybe he can get in shape in a week down on 3MB. Third, Dr. Brogan is very happy with Karl's progress. He came in smiling and joking and left with the final words that Karl has been keeping him on his toes...he said Karl is a bunch of puzzles wrapped up in an enigma -- one of Karl's favorite expressions.

Today, Karl's labs came back a bit abnormal. His liver enzymes were about 4 times what his baseline numbers were a few days ago. The infectious disease doctors are analyzing his current drugs and will take him off some they think he can do without (Tylenol) and retest to see how his liver reacts. His white count is normal which means there is no infection. Plastics continue to be pleased with his healing.

Yesterday afternoon, Mom and I went to the Apache Mall to grab a bite for lunch and to do a little shopping. We ended up at Victoria's Secret where we got a bunch of fragrant lotions. Karl happens to love their lotions and knowing this, Mom brought back a tube of Pure Seduction. She rubbed it on his legs before we left for the evening. Apparently Karl rubbed it on his arms and then left the tube at his side and promptly fell asleep. During the night it slipped down into his bed farther and ended up near his legs. In the morning, his nurse Annie and aide Jill found it while they were fluffing him up. Well, you can only imagine the amount of ribbing he got. And it continued all day. His therapy team from two years ago came for a visit and noticed how wonderful his room smelled and then noticed the Pure Seduction lotion on his table. If you know Karl at all, you can just imagine the faces and comments he made. But I think I should leave it at that.

Something interesting happened today to me. I was walking around the St. Mary's campus and a man with two small dogs, Lily and Lulu, came up and started chatting. We talked about their ages and breeds and he volunteered that they were therapy dogs, except for Lulu who is on probation because she likes to eat her patient's food. Then he asked if I had a dog, blah blah blah, and pretty soon he asked why I was here. I told him the story and how wonderful everyone here has been and how at home we were. Then he asked me who our doctor was. When I told him it was Dr. Yaszemski, he said, "Mike is a very good friend of mine. Do you mind if I share what you've told me?" Of course I told him I'd be happy if he did. Then he said, "I'm on the Board of Governors. Do you mind if I share your story with the board?"

Wow. I Googled the Board of Governors at Mayo. This guy serves with Tom Brokaw and a bunch of pretty smart folks. I wish I had asked him his name. Then again, this is so typical of our whole experience here -- a bunch of brilliant folks run this place and they are so unassuming. We are so blessed!

May God bless you as well,

Kerry

Progression

Yesterday was a day of progression for Karl. And today he learned he'd be having a PET scan.

First for the progression: yesterday the plastics doctors were very happy with the way Karl is healing. They ordered that the wound on his bum no longer be packed; it can now be air dried. Also, the viscosity of his blood was at the point where he no longer needs heparin intravenously. He's now only on coumadin. In other words, it's at the point where no other blood clots should form. It was a good day!

Karl learned today that the PET scan doctors ordered is a go. It will be covered by insurance. They were all set to take him over by ambulance to the Charleton Building, which is in downtown Rochester, when nurses reminded the doctors that the plastics division should probably be contacted to see if it was okay for Karl to be on a hard stretcher. A few minutes later Karl's nurse Jenna reported that plastics said he could go on Friday, but not today. Thank goodness because he was getting hungry!

Today I went to the Gonda Building to return something Karl bought from the Mayo Clinic Store. Mom asked that I buy Karl a teeshirt so he would quit telling all the nurses how terrible we were for buying souvenirs and that he gets nothing and that if it weren't for him we wouldn't be on vacation, blah, blah, blah. Anyway, I actually bought him TWO teeshirts so we're hoping that will quiet him for awhile. I'm sure he'll figure something else he can complain about, but for the time being we're one up on him. Heheheh.

We're still at the point where we really don't know when Karl will have the cyberknife radiation or when he'll be allowed to come home. But as soon as I know anything, I'll be certain to let you know.

Love and blessings,

Kerry

Tornado/Ghillie suit

I'm still not convinced, but there are nurses here on the 8th floor that believe there's something to the Friday the 13th = bad luck superstition. There was a tornado warning here at St. Mary's and for the first time ever, they had to move Karl and the other patients out in the hallway for the duration of the storm. Then some of the rooms flooded so they had to shuffle patients around. They were sooo busy.

Prior to that, Karl called me while I was on the road somewhere in Wisconsin. He said there was a severe T-storm warning. When I asked what they were doing to keep him safe, he told me they closed the curtains and were giving him extra pillows. Well, the phone was a bit static-y and I thought he said they were giving him extra pills. We've been having a good time with that ever since.

I ran dead into the storm on my drive, but only after encountering an hour-long parking lot in Chicago and red tail lights all the way to the Dells. (I'm going to go a different route on the way home). Two years ago I wrote a post on this blog entitled something like, "Into the Storm." The message was about forging ahead and having faith. I mentioned that the sky was dark and ominous, but as soon as we got to Rochester, the skies lightened up and the sun peeked through, illuminating all the Mayo buildings.

Yesterday was the same, only this time I took photos.

Top: looking north at the Mississippi River, just after I crossed into Minnesota.

Middle: There was a tiny area where the sun was shining. The low ceilings and dark clouds looked pretty ominous. As I drove further, I saw veils of vertical clouds clinging to the hills. I couldn't take photos because it was raining too hard.

Bottom: Just south of Rochester, the sun peeked out of the clouds. It was still pouring rain, but it was encouraging to see the sun..

Karl is feeling well and his skin grafts are healing nicely. He is receiving heparin and will bridge over to coumadin to thin his blood and dissolve the non-threatening blood clots.

I brought with me a gun/accessories catalog. He was eager to look at it; he really wants a Ghillie suit. He says he'll hide in his bed and scare the nurses. I love Karl's sense of humor.

Ghillie suit

Hope you have a wonderful weekend.

Blessings,

Kerry

Hanging out and healing

Hello folks,

Karl's just hanging out and healing. Yesterday there wasn't much activity. He went down for a hydrotherapy treatment on his foot and then rested for the rest of the day. I know he'd be happy to hear from you. His email address is kaz-ham@hotmail.com. I don't know how often he checks his email, but he has his computer so feel free to drop him a line.

I am driving to Minnesota today to see Karl and Mom. Don't know how long I'll be there. Karl suspects he'll be discharged after his cyberknife treatments for the sarcoma on his spine. We're not sure when that will be, but we think he will have another week of healing before they do that.

Anyway, keep the prayers coming!

Love and blessings,

Kerry

Ch-ch-ch-changes

One thing that's been very consistent with Karl's stay at St. Mary's is change. I'm so thankful that Karl is able to "go with the flow." The announcement of these changes never gives him any heartburn. The only issue I have is that if you don't keep up with the blog on a regular basis, you may have outdated information. And sometimes only minutes after I've put up another post, the information is obsolete. But I'm fine with it because I know all of these changes are made with Karl's best interest in mind; it's the kind of care he needs. I'm grateful the people there are not so rigid that they cannot change their minds as the situation necessitates.

The newest change is that Karl's plastic docs have said they don't want any extra pressure put on the skin graft on his bum. The cryoabrasion procedure would require him to lay on the graft for two hours straight and that would compromise the work they did. So, they've decided to have him come back in a couple months when the flap is well-healed (which, by the way, is pink and healing well). The nephrologist came in to tell Karl it wouldn't be a problem -- the cancer (if that's what it is) won't grow in that time period. Karl said it would be a nice birthday present to himself...another vacation in Rochester and another scar!

The CT-scan Karl had yesterday came back negative. YAY!! They did find another blood clot they think may have developed the same time as the other clot. The screen they put it two years ago will catch it and they told him it was nothing to worry about. Now they want to do a PET scan just to make doubly sure there's no other cancer lurking about. We'll see if the doctors can convince his insurance company to pay for some of it.

I asked Karl if he was sleeping well. I know he takes a lot of cat-naps during the day because he gets pestered so much. So I thought I'd lay out Karl's typical night/day. At midnight the nurse comes in and changes his dressings. At 1 a.m. he gets more pain meds. The nurse comes in from time to time from 1:30 to 5 a.m. to chart his vitals and give him more pain meds. They try not to wake him, but Karl's a light sleeper so when the nurse is counting his respirations, he normally wakes up and startles the nurse by opening his eyes widely, which brings him great delight. Last night Rebecca asked him why he wasn't sleeping and he told her with a sarcastic grin, "If you'd quit coming in here and staring at me I might get some sleep." Anyway, at 5 a.m. they come in for a blood draw; at 6 a.m. they change his dressings again and at 7 a.m. the doctors start rounding. For most of the daylight hours there are people in and out -- therapists, doctors, nurses, etc.

He's getting so much attention! Thanks be to God!

Blessings,

Kerry

So far, so good

Sorry for the hiatus...brother Kirk was in town and we had a nice time catching up.

Karl is doing well in terms of the plastic surgery to repair his bum and heel. Doctors were especially concerned about his heel because the blood supply is not as good there. But, so far, so good. They've been applying an ultrasonic mist on the other heel and it continues to respond well.

In the meantime doctors have been trying to figure out how to best take care of the spot on his kidney. With his kidneys' limited function, they want to limit the invasiveness and blood loss. Karl has agreed to go with cryoabrasion. They will do that procedure sometime this week or next. The cryoabrasion consists of punching a hole in the spot and freezing it. They will take a small biopsy to determine just exactly what it is. His body will then eventually absorb the part that's frozen. Karl will be under general anesthesia. They feel this procedure will be less stressful on his system and still get the job done. There are advantages to doing the cryo now: 1). With any loss of bad tissue, there is loss of good tissue and they want to limit that loss while the mass is still small. 2) They will keep close tabs on him and if the mass grows at all, they can always go in and get it later. We're thankful it's a slow-growing mass.

Today Karl is going in for another CT-scan -- this time it will be of his entire body. Doctors don't think they'll find anything else, but they want to make sure. And since the car's in the shop, they figure they can take care of it.

Doctors have told him they will probably do the radiation cyberknife on Karl's spinal tumor in 2-3 weeks. It has the same advantages as the cryo, but is apparently works better. Anyway, we're looking at Karl coming home in 3-4 weeks. We're hoping and praying!

Since you all probably look forward to Karl's crazy antics, I will not disappoint you. Karl is hooked up to a heart monitor. Nurses have it set to alarm whenever it goes above 120 beats per minute. For some crazy reason whenever he eats, his heart races in anticipation of the food going in his mouth. It's really odd. One day Karl decided he would get a fork full of food and move it close to his mouth and then back it away. The alarms sounded and the nurse came running in. She asked what he was doing and he said he was "teasing himself."

We are all so thankful for your thoughts and prayers. We can certainly testify to how well they work.

Love and blessings,

Kerry

You aren't going to believe this

The good news is it's 98 percent curable.

The bad news is that Karl was told about two hours ago that he has an 85 percent chance of having kidney cancer. I know. Unbelievable.

He has apparently had a small spot on his kidney for two years. They've been keeping check of it since they first saw it in 2008. The Mayo nephrologist told Karl that if it stays smaller than 3 cm, they normally don't do anything. However, since it's grown quickly to 2 cm since the last time they checked it, they feel it's necessary to get rid of it. If it is indeed cancer, it is not a sarcoma. It's a completely different kind. They will talk with Karl tomorrow about what they'd like to do to erradicate the tumor. Have I mentioned lately how thankful we are that Karl's at Mayo?

Dr. Yaszemski came in tonight to talk with Karl. He told Karl everything went very smoothly with the surgery. They cut off part of a rod and shifted a muscle from his right rump to fill the void left by the decube. They also moved tissue around on his heel and he's in a soft cast. Dr. Y also alerted Karl to the kidney problem. He told him they found a spot on his kidney, but it was nothing to worry about. He also told him someone would come in to talk about it.

Now you might be saying to yourself, "What are the odds that one person can have 3 different kinds of cancer?" I don't know the answer to that. All that I can figure is that if cancer was the lottery, Karl would be very wealthy. Then I wonder why it couldn't be the lottery. How much can one guy take?

Karl called himself -- with a laugh -- "Cancer Boy" after he explained the situation to me. Then we talked and laughed about Karl's Kwips on the right-hand side of this blog and the whole "conceived in a nuclear waste dump" comment. Karl now thinks maybe it was ground zero in Hiroshima. Anyway, all I can say is, "Hey Cancer Boy, I'm thinking about getting you a cape and some tights because you are my superhero."

Blessings,

Kerry

Surgery news

11:45 a.m. EDT: Just heard from Mom and Kirk out in Minnesota. Karl didn't get an early start as slated. In fact, Dr. Brogan came up and told him the party was going to get started without him! Anyway, he went down around 8:30 a.m. CDT and surgery began at 9:30. They expected it to last a couple hours and then another recovery period before they ship him back up to his Clinitron bed on the 8th floor. I'll add to this post whenever I hear anything.

Noon EDT: Wow, just heard from Kirk. The service called to tell him doctors were closing up and Karl will be in recovery for the next two hours or so. Since the surgery took less than two hours, we can only assume everything went well. I'm sure we'll know more soon.

2:45 EDT: I am on the phone with Karl right now! He's in his room and has been there for about 45 minutes. He's a bit hoarse and says his foot is really smarting where they patched him up. He was told everything went well. He has a large bandage and drainage tube on his tookus, but thankfully, he can't feel anything. He'll be in his Clinitron bed for the next three weeks where they will monitor him carefully. He's begging his nurse Tracy for more pain relief, but she said he's not getting anything. Then he said, "You mean I can't even get an aspirin?" Oh his sense of humor!! Thankfully, some things never change. I'll report in if I hear any more later this evening.

Thanks for all your emails and facebook messages. We're feeling the prayers and love!

Blessings,
Kerry

Surgery details

The past few days have been busy with decision-making. Honest to goodness, there were more ideas tossed around than I could have ever imagined. We are all so grateful that so many ideas are being considered. Anyway, this what I know:

Surgery will take place tomorrow, Aug. 5 at 6 a.m. CDT. They've collectively decided they would like to keep the metal holding his spine together intact. The hydrotherapy (lavage) has been doing a good job with cleaning the decube and generating new growth. Doctors feel they can take a piece of Karl's buttock and skin and fill in the rest of the hole. They also feel they can kill any bacterial growth that may take place on the metal with antibiotics. They'll assess the situation over the next few weeks, and if necessary, they'll take out the metal. Obviously they don't feel that will be the case, otherwise they'd remove it tomorrow, but they want the surgery to be as minimal and least invasive as possible. Karl said they were also going to patch up his right heel, but lavage has also made marked improvements on his heels. The surgery shouldn't last long, but they couldn't give us a time-frame.

In terms of the cancer, Dr. Yaszemski feels it can be killed using radiation. They've talked about cryoabrasion, cyberknife and a regular surgical resection. The radiation is apparently the least invasive and Dr. Y feels that it will be easier for Karl to tolerate than the other options. They will do that in about 3 weeks after his skin flaps have healed better.

I just talked to Karl moments ago to see how he was doing. He said he's very confident and relieved that it's finally going to get repaired. He said Dr. Y was also very confident. He told Karl he's first on the docket and he'd take good care of him.

We are so thankful that God lead us back to Mayo. We hope you'll say an extra prayer for Karl and the doctors and I promise to post something as soon as I get any information.

Love and blessings,

Kerry

Back in the saddle

Last week certainly brought news we were all hoping never to hear, but it's time to move on, forge ahead and see what God has in store for us. While Randy and I were recharging our batteries in Kewadin, MI (at the A-Ga-Ming Resort overlooking beautiful Torch Lake), there were a few bits of news.

Karl's heart rate still continued to be elevated, so after talking it over with the endocrine team, Teresa, his PA-C, ordered some doppler studies to rule out a blood clot. Well...they found one. It was located in his groin area and had partially broke off and went into his lung. Karl said they were not concerned and they put him on coumadin to thin his blood. I asked Karl when they were going to find something good...like a golden egg stuck somewhere. Randy replied that if they did find a golden egg, they'd never tell anyone.

Dr. Yaszemski was finally in town again and talked to Karl on Friday. He told Karl that after extensive consultation with many other physicians, he thought it would be best to surgically remove the tumor. At the same time, they would also remove all of Karl's rods and screws and put a tissue flap on both his rear end and heel. He said the surgery would last hours rather than days it took in 2008. He said the earliest the surgery could take place is Thursday, Aug. 5, but needed to assemble the appropriate team with the plastic surgeons being the most important. Another caveat is that Dr. Y is also on call as the trauma surgeon that day and he told Karl he wanted him to be his entire focus that day.

Dr. Y did deliver good news: he didn't feel Karl would lose total function of his legs afterall. He said he'd probably be weaker in the knees, but with therapy he'd be able to build up his strength and use them as he does now. Dr. Y did say Karl would spend a good amount of time at Mayo, but not as long as last time. He also said that if the structure failed, he'd reinstall the rods and screws, but by taking them out, there wouldn't be the chance for reinfection. By the way, his hydrotherapeutic lavage sessions are going very well. They are keeping the infection at bay and his decubes are improving. Karl will also probably get a dose of radiation in his back. They are concerned he couldn't handle another round of chemotherapy and since this area hasn't been exposed to radiation in the past, they are comfortable with that as an option.

Karl is comfortable and confident. We are all very happy that they will keep Karl at St. Mary's/Mayo for a period of time. We know he's getting phenomenal care. Right now brother Kirk is there with Mom, who twisted her knee again. She was promptly given a cane by the wonderful girls in rehab and Karl reported today that she seems to be walking better already.

We feel your prayers and are most thankful for them. Keep them coming!

Blessings,

Kerry