History

Thursday, May 31, 2007 10:12 PM CDT

Thought I better let you all know that Ann is doing very well. She still has a Gallstone but has been able to control the pain. Low fat and little alcohol has helped.

The Gallstone is a result of the feeding tube. Ann did not use her Pancreas and Gall bladder for three months. This resulted in a galstone.

Our next trip to Dr. Loggie is in late August. Ann's cancer markers are looking good. We feel very blessed as we open up a new chapter in our life. Our daughter, Ashley heads off to college in a couple of months. We'll be traveling to Dallas a number of times this summer. Ashley is going to SMU.

Thanks for checking in and especially all the prayers.

Love,

Brian and Ann

Saturday, February 3, 2007 3:50 PM CST

It's been 24 months since Ann's MOAS surgery with Dr. Loggie.

Just in case someone checks I want to let you know that Ann continues to do very well. We went down to see Dr.Loggie on January 31 and received good news that her CT scan remains clear.

We continue to be somewhat concerned about a slightly elevated tumor marker. This tumor marker has shown a steady increase since 9 months post surgery. Dr. Loggie mentioned that he'd like to see Ann in 3 months vs the 9 months we were hoping for. The scans appear to be free from tumors. They were looked at by 2 different people so we feel comfortable that they both did not see anything out of the ordinary.

We'll have to see if the markers continue to rise. The rise in the 19.9 marker could also be a result of inflamation in her intestinal track. Ann has a gall stone that appeared after surgery. There is a chance that this could increase her tumor marker levels.

Continued prayers are always appreciated.

Thanks you very much for your interest and concern.

If your reading this and would like talk to us about Ann's treatment and recovery please feel to call us at 651 484 2125.

Love,

Brian, Ann, and Ashley (dreaming about spring break in Maui....w/o mom and dad)

Thursday, July 13, 2006 10:09 PM CDT

It's been 18 months since Ann's MOAS surgery with Dr. Loggie.

Just in case someone checks I want to let you know that Ann continues to do very well. We went down to see Dr.Loggie and received good news that her CT scan remains clear.

We continue to be somewhat concerned about a slightly elevated tumor marker. She went to have another tumor marker test today.

Continued prayers are always appreciated.

Thanks you very much for your interest and concern.

If your reading this and would like talk to us about Ann's treatment and recovery please feel to call us at 651 484 2125.

Sunday, February 5, 2006 10:17 PM CST

It's been a year since Ann's surgery.

Just got back from Dr. Loggie's office in Omaha. All is well wih Ann. She still has one tumor marker that remains high but the CT scans do not show sign of disease.

The tumor makers jump up and down so we'll just continue to monitor them for trends and schedule another trip to Omaha for July.

Thank you for checking in and continued thoughts and prayers.

Love,

Brian and Ann

Sunday, December 18, 2005 10:18 PM CST

I haven't posted any news lately but just in case someone checked in I wanted to let you know that all is well with Ann.

On December 16 Ann got her results from her CT scan. She doesn't have any new growths since her last CT scan in March. We had Christmas a little early this year.

We go back down to Omaha the last week of january for the one year check up.

Thank you for the prayers and support over the past year.

Love,

Brian and Ann

Tuesday, October 18, 2005 8:02 PM CDT

It’s been awhile since I last updated Ann’s page.

Wow it's been just about a year since Ann was diagnosed. To think that some doctors felt she might be gone in another 6-12 months. It makes me shudder on how fast a year does go by.

I wanted to let anyone that checks on her page to know that she is back to working out. She walked 5 miles today and feels very good. She continues to take nutrients that she swears eases her pains

Her blood counts for tumor markers are all within normal range. One of three came up but one of three went down so e guess they equaled out.

She just received a flu shot. She qualifies for the flu shot before just about anyone due to her spleen being removed.

She’ll be getting a CT scan in December for review by Dr. Loggie in January.

I included a link to Jose Suarez blog that he created to help people keep informed of his sister’s treatment for this same disease. Please keep Malena in your prayers.

Jose and myself have exchanged a number emails. Ann and myself met with many of the same doctors and made many of the same decisions that Malena made. We met with the same physicians at the Mayo clinic. We talked with Dr. Sugarbaker’s office and Paul Mansfield office at MD Anderson.

I realize this doesn’t mean much to you but as you read through his web page you’ll gain an appreciation for Dr. Loggie and his methods used for treating this disease. This will help explain why we also went to Omaha for treatment.

Life is wonderful. Yours and our prayers have been answered.

Thank you so much for checking in

Love,

Brian and Ann

Sunday, July 17, 2005 8:55 PM CDT

Do you believe that it’s almost 6 months since Ann’s surgery?

On July 13 Ann and myself went to see Dr.Loggie in Omaha for her 6 month check up.

We scheduled the trip so that we’d be gone while Ashley was in Georgia. Ashley went to Georgia with the Youth Church Group from our church. We figured that Ashley had made the trip to Omaha three times so she probably didn’t want to go a fourth time.

Ann really did not want to stay at the same hotel. She said she had bad memories. I had figured that I could call 2-3 days in advance and book a nice room downtown at the Marriott or the Embassy suites. It turns out that Omaha is a popular tourist area in the summertime and we couldn’t get a room. So we ended up back at the same hotel where Ann spent over 2 weeks recovering.

The staff at the hotel was very happy to see how well Ann recovered. Ann really doesn’t remember everyone of them. She was to sick at the time. They remembered her and all remarked how much better she looked than when they last saw her. It was pretty neat to talk with them.

We were happy to hear that Jim and Aimee Disney would be there at the same time. We were able to do dinner with them and their daughter Brianna on Tuesday night. If you remember Ann was very concerned about Jim’s recovery. Jim spent a month in the ICU unit. When we saw Jim we were happy to see that he looks great. Their daughter Brianna is a sweetheart. Since they were at the same hotel we also had breakfast with them.

On the day of Ann’s appointment we also met Vivian and Tim. We’ve read about Tim’s surgery and recovery on the PMP Bellybutton’s club web site. It was nice to put a face with a name

Ann’s tumor markers are at acceptable levels. Her blood clot is GONE. She said she knew it was gone but was pleased to see that the scans proved her right. Dr. Loggie said that she’ll need another CT scan in 3 months and then we’ll need to see him again in January. He continues to be very pleased with Ann’s recovery. There’s one spot that two doctors are a little concerned about. Dr. Loggie said that we’d just watch it. With her tumor markers coming down he felt it could be scarring due to the problems she experienced with her pancreas after surgery.

Ann and myself spent Wednesday night on the 16th floor of Harrahs watching the sun set over Omaha while having appetizers and a bottle of wine.

Thank you for the prayers for both Jim and Ann.

Love,

Brian, Ann, and Ashley (near Atlanta, GA)

Friday, July 1, 2005 10:53 PM CDT

Well it's only been a couple months since my last post so I thought I should let you know that everything is going extremely well.

Ann is feeling very good. She is back on a completely normal diet. We will be going to see Dr. Loggie on July 12-13.

We went on a vacation in June down to New Orleans for 3 days and then on to the Florida Panhandle. Ann has a trip planned for Pheonix in late July and out to Virginia in August.

She has been taking some Mannatech products and continues to take Celebrex.

Two of Three tumor markers are extremely low. The only marker that's elevated is at 38. Normal is 37. The trend is down. Some peole say it takes 6-9 months for the markers to come down to normal.

Ann Ashley and myself continue to feel very blessed.

Ashley is leaving on a Church youth right after the 4th so it'll just be Ann and myself in Omaha. We're hoping to hook up with Jim and Aimee Disney and Kat and Gary while we're down there. If you recall we've been praying for Jim since his surgery in early March.

Thank you for all the prayers.

Love,

Brian, Ann, and Ashley

Sunday, May 8, 2005 8:33 PM CDT

It’s been a WONDERFUL Mothers Day.

For those of you that are still wondering if Ann is improving she is. She is now going grocery shopping, visiting with friends, driving to get her blood tested and doing everything that a healthy person would do.

Last Friday I asked if she’d like to go for a bike ride. At first she said sure. After about 2-3 minutes she said. “I forgot I had surgery I wonder if it’d hurt.”

She continues to eat a lower amount of fat and has yet to “test her pancreas” with a couple of glasses of wine. Other than that minor concern about her pancreas she’s doing extremely well.

We are so grateful for all of the prayers. Every other day we meet someone that we really hadn’t known previously who say that they heard of Ann and said a few prayers for her. Ann and myself will forever be grateful for all of the people who came together to offer help and prayers. We don’t know how to say thank you other than to be here if others are faced with a similar situation.

Later tonight I’ll post some recent photos of Ann so you can see for yourself how well she’s recovered. (Ooops got sidetracked, I'll updated the photo's Monday evening)

Thank you again for checking in. As you can tell I’ll be posting less and less as she gets better.

Thank you for all the prayers. As her doctor, Dr. Loggie said as he walked out of the operating room, “The prayers and the Rosary worked”.

Love,

Brian, Ann, and Ashley

Saturday, April 23, 2005 10:56 AM CDT

A week ago we had a little scare as Ann’s blood test indicated that she was full of cancer. After a couple of hours and some discussion with doctors it was determined that this particular blood test reacts negatively if the pancreas is inflamed. Since the blood was drawn when the pancreas was acting up we figured this was the culprit. Two other tests that were performed indicated that she doesn’t have any tumors.

Ann continues to get better every day. She drove the car for the first time a couple of days ago. She only went a very short distance. She drove far enough to see if it would cause her any pain.

Ann had her blood tested and received some of the results yesterday. The blood work showed that her enzymes are in the upper part of the normal range. This is very good news as she’s been without the feeding tube for about 2 weeks.

She continues to eat a very low fat diet.

Her blood thickness levels are exactly were they need to be to be therapeutic against her blood clot. We’re hoping that she’ll be able to get off this medication in 3-4 months.

Thank you for all the support and prayers you have provided over the past 3 months. Ann, Ashley, and myself have been truly blessed.

Love,

Brian, Ann, and Ashley

Sunday, April 10, 2005 8:58 PM CDT

As Ann feels better and better I’ll be less inclined to update the web page.

She remains extremely grateful for how she feels. Her pancreas hasn’t acted up for a couple of days now. Without the feeding tube she’s feels very comfortable getting out of the house. We spent Saturday looking for new clothes for her and Sunday she went to Mass for the first time since before her surgery.

She’s still on a low fat diet consisting of fish and chicken but she’s starting to enjoy a VERY small amount of fat in her diet. She even had one sausage link at the St. Johns Men’s club breakfast this morning and she had a half of a cookie this evening. She told me she wants to let everyone know she enjoyed every bite.

She remains in a very upbeat mood as she feels she is continuously improving.

Thank you all for your wonderful support and prayers.

Love,

Brian, Ann, and Ashley

Thursday, April 7, 2005 8:16 PM CDT

This morning brought some anxiety as Ann’s enzymes appear to be going up. We talked to Dr. Loggie and Dan at Creighton University about the situation. After reviewing Ann’s CT scan and the enzyme number chart that I’ve been keeping they decided that the tube could GO!

This was great news. At 2:30 the tube was pulled. Ann said that the tube going out left her nose feeling hot. It was like pulling a 48 inch long thick hot rubber spaghetti noodle out. She said it hurt more coming out than going in.

Ann had taken some pain pills and anti-anxiety medication prior to the tube being pulled. She took the pills 45 minutes before they pulled the tube. The drugs kicked in after 60 minutes, 15 minutes after the tube had been removed. At least she got a pleasant buzz from the ordeal. Because of the pancrea problem she can’t drink alcohol for awhile. She now has a way to get the same effect.

Ann finds it a little coincidental that when she met Jim Disney in Omaha in late February she said something to the effect “When you go home will be the day that this here tube will be out”. Today Jim went home.

When we arrived home Ann walked around the neighborhood for a little bit, visited with a few of our neighbors, and was able to enjoy a beautiful day in Minnesota.

Thank you for the prayers. If you’re wondering if Ann feels normal, she’s in the kitchen putting away the dishes.

Praise The Lord the tube is OUT.

Love,

Brian, Ann, and Ashley

Sunday, April 3, 2005 9:28 AM CDT

Sounds like I better give an update…….

Ann continues to get better. She cancelled her blood draw for her enzyme testing this past week. Her pancreas felt so good and she is so tired of getting stuck with needles that she felt she didn’t need to find out that she was in normal range.

She is back on a diet that we had tried mid-March. So right now we are limiting her fat to about 5-10 grams per day. She’s eating chicken, bread, fruits, noodles, and veggies. We have also reduced her tube feeding to 1200 calories a day.

The plan is that I’ll take her to the doctor on Tuesday and we’ll get her enzymes tested. On Wednesday or Thursday we’ll get her results. If she’s within normal range we’re going to get the tube pulled as fast as we can.

Once the tube is pulled she’ll stay on a very low fat diet for weeks if not months. Pancreatitis is very painful and Ann doesn’t want to go through this process again.

All in all Ann is doing quite we’ll. Even though her exercise has been limited to inside the house she’s getting some of her muscle back. The backs of her legs have muscle back in them.

Most of her pain is now related to the surgery. The pain is mostly consists of stiffness / tightness. Please remember she’s remained quite sedentary these past 9 weeks.

Thank you very much for the prayers and for checking in.

Love,

Brian, Ann, and Ashley

Wednesday, March 30, 2005 8:43 PM CST

These feeding tubes are really in the news lately.

Ann has been doing really well since last Friday.
Now that her pancreas is improving she’s even started to do a little house cleaning.

She has me to do the bigger chores but she’s helping out a ton now. Apparently she’s getting a little tired of lying around all the time. It’s been 8 weeks since her surgery so she feels that she needs to start to get going.

She still gets fed via the feeding tube but is starting to eat more and more each day. She will remain on a zero fat diet for the next couple of days. She’ll probably start to eat some fats Friday. She’ll be limited to about 5-10 total fat grams per day.

Right now we’re trying to get her about 2000 calories a day. If she continues to get better the earliest she’ll have the feeding tube pulled is next Friday.

She’s still working on improving her pancreas. It continues to give her some minor pain throughout day but she’s learning how to live with it.

I’ll report if there are any major changes. Please don’t look for anything for a day or two because there really isn’t a ton to report on.

We’re praying that she continues to improve. Thank you for your thoughts and prayers.

Love,

Brian, Ann, and Ashley

Monday, March 28, 2005 8:55 PM CST

Ann had a very good weekend. Her ability to talk has greatly improved. She thinks the feeding tube has grown into her throat and into her nose so it doesn’t bug her as much.

She feels pretty good. She even sat at the dinner table today for the first time in over two months.

The enzyme numbers from Thursday’s blood test came in at the lowest they’ve ever been. They’re back to the high end of the normal range. This was wonderful news. The doctor’s have now said that she’ll need to monitor her pancreas by the pain. Ever since Friday the pain has started to become less and less. Other than a slight backache and some pains that come and go during the day she’s doing quite well. It’s not like she’s 100 percent, she’s still very weak. We’ll take the more good days than bad days. She’s in a pretty good mood.

The doctor still wants to inspect her pancreas with the ultra sound that goes down her throat and into her stomach. Ann’s has decided to put it off for at least another week. She’s getting really tired of being pricked and prodded. As long as she’s getting better she’d rather not have another procedure and a chance of a complication.

Things are improving. She’s still planning on keeping her feeding tube for 1-2 weeks so she can eat and still get fed via the tube. She’d like to put on a few pounds so she can start walking without losing weight. If the feeding tube was taken out she'd likely drop 2-4 pounds that she doesn't have. Without the feeding tube this would be much more difficult.

Ann has had 3-4 pretty good days. We don’t have anything to complain about.

Thanks for checking in. Your thoughts and prayers have been appreciated.

Love,

Brian, Ann, and Ashley (back in school)

Friday, March 25, 2005 6:43 PM CST

We didn’t get Ann’s enzyme test results today. It seems like we have the slowest lab around. It consistently takes 2-3 days to get her enzyme counts.

Ann does feel much better today. She just returned with a friend from her house. Her friend heals by prayer and Ann said it made a huge difference. At this time she feels the best she’s felt this week.

I’m going to take her to get her haircut tomorrow so she can get a more normal feeling. She hasn’t had a haircut for about two and a half months.

She still has the feeding tube taped to her face. She seems to be getting quite used to it. She’s even learned how to talk with it. When you think that if you didn’t have it you’d die it becomes quite a security blanket.

She’s going to continue on the liquid diet until her pancreas feels normal and her enzymes are normal. If she feels as good as she feels right now I’ll be even to be able to get out of the house.

Thanks for checking in and the prayers. She feels like she’s getting bette.....at least for today.

Love,

Brian, Ann, and Ashley (32,000 feet over Ohio)

Thursday, March 24, 2005 9:20 PM CST

I’m not going to write much because not much happened.

We got the results from the CT scan. The pancreas doesn’t appear to be infected. We also don’t know if Ann will move forward with the endoscopic ultrasound. Ann would need to stop taking blood thinners for a few days. This would stop the treatment for her blood clot.

Another concern is that a scope into the stomach might dislodge the feeding tube. The feeding tube is looked at as being a safety net when Ann tries to eat. We’ll run this past the doctor on Monday.

If it wasn’t for the tube Ann would have to be hospitalized by now because she can’t eat enough to maintain to her weight. She loses 2-3 pounds very quickly when she’s not eating.

Ann is still ten pounds lighter than her weight before surgery. Ten pounds on Ann is a lot. If it wasn’t for the tube hanging off her face she actually looks pretty good. She’s looking forward to firming up her skinny body as soon as her pancreas allows her to.

The pain today is more in her front and then her back. We don’t know if this means she’s getting better or worse. So the wait continues. We’ll get pancreas enzyme results tomorrow yet we’re hearing more and more that the treatment will start to be centered on Ann’s feeling of pain. It turns out that the normal enzyme levels may not indicate pancreas problems.

Thanks for checking in. The prayers are always appreciated.

Love,

Brian, Ann, and Ashley

Wednesday, March 23, 2005 6:33 PM CST

Ann is back on the feeding tube and is having a pretty good day yet she’s still in pain. She also gets weak quite easily. This is a result of inactivity relating to trying to get her pancreas healed.

She still feels pain from her pancreas but it seems to be less than yesterday. We spent today getting a CT scan and talking to doctors about getting tests for tumor markers, infections, enzymes, and blood thickness. We’re trying to get things set up so all the different doctors get their tests from the same blood draw.

We received some information that led us to talk to the doctors about infections of the pancreas. The trouble sometimes is trying to diagnose an infection. We’re talking to doctors about the best way to see if the pancreas has an infection.

It’s not as though the pancreas can be easily seen. So we’re continuing to try to figure things out with the help of others who have offered some suggestions.

Tomorrow (Thursday) we’ll run and get Ann’s blood tested for about 5-6 different things. We won’t get the results until Friday.

The feed tube will stay for the foreseeable future. It’d sure be nice to get rid of it so Ann could talk more than a sentence or two. But then she’d start telling me what needs to get done around the house.

Thanks for checking in and for the prayers.

Love

Brian, Ann, and Ashley

Tuesday, March 22, 2005 11:07 AM CST

This morning we met with a Gastorenterology specialist. His diagnosis of Ann was post operative pancreatitis. This really didn’t come as a surprise.

He reviewed the graph of Ann’s enzyme’s that I have been using to track her progress. At first he walked into the room and said that he’d have to reschedule the appointment because someone in his office or someone at Hubert Humphrey Cancer Clinic messed up his schedule. He normally needs a half hour yet once he saw that we had all the information he sat down and examined Ann. He only spent about 10 minutes with us but he asked all the right questions. We've been at this awhile so we had all the information he needed.

He scheduled a CT scan for tomorrow and an Endoscopic Ultrasound for next week.

The endoscopic ultra sound is only performed at 2 clinics in the metro area. The doctor he likes to use is out on Spring Break. Ann will have this test performed next week. He wants to ensure the ductwork connecting the pancreas to the intestine is functioning properly. He also wants to see if there is any type of infection of the pancreas.

The Endoscopic Ultrasound requires that Ann receives a mild sedative. The doctor will then pass a ultra sound tranducer and scope down her throat and into her stomach. Once in her stomach they’ll use the ultra sound transducer to get a very clear picture of her pancreas and ductwork.

Ann is back on the feeding tube and feed bag. She’s lost some weight since she tried to get off the feeding tube. She can’t afford to lose any weight because she’s REALLY skinny right now. The doctor didn’t even mention getting rid of the tube. She feels like she’s getting better but the elevated enzymes continue to have the doctors concerned.

We have additional blood tests for Thursday that will provide additional information on her enzymes. Her Easter dinner will likely consist of a liquid diet.

Ann is in bed, watching movies, and getting fed by the tube right now.

Thank you for checking in and for all the prayers.

Love,

Brian, Ann, and Ashley (Washington DC, touring around)

Monday, March 21, 2005 6:15 PM CST

It looks like the doctors meeting that we have tomorrow could not have been scheduled at a better time. We just received the news that Ann’s enzymes went up quite a bit. They are now 50 percent higher than normal.

What concerns us is that the blood for the test was taken last Thursday. Ann was very careful prior to the test with her diet and stayed away from doing anything strenuous. In the four days prior to the test she was on the liquid diet that was being fed down her feeding tube. Seeing the numbers come up was quite a shock.

For the past 3 days she has been feeling that she’s slowly getting better. It was odd to see that the numbers go up on Friday. She was feeling very good that morning. Three days prior to the test she was feeling pretty bad so that might have something to do with the higher numbers.

We’ll be running this past the doctor tomorrow. Right now we don’t know if she should go back to strictly tube feeding or if she should continue to eat fruits and vegetables with limited protein. We’ll talk about her diet with her doctor tomorrow.

Ann really, really wants to get back to a sense of normalcy. She is doing everything she can to get better and to get rid of the feeding tube. It does help that it’s not summer.

Ann will remain with the feeding tube. Dr Loggie had said that if the numbers are above normal or going up that Ann should not get the feeding tube out.

Ann appreciates all the thoughts and prayers.

Love,

Brian, Ann, and Ashley (on spring break in Washington DC)

Saturday, March 19, 2005 10:33 AM CST

No news. We didn’t receive the blood test results on Friday so we don’t know if Ann’s pancreas has improved during the past week.

She has been eating a fat free diet consisting of chicken, chicken, and vegetables. She has tried to stay away from the tube feeding for as much as possible.

We received the first bills from Creighton. For those of you that have always wondered if you should keep your insurance Ann’s surgery and 3-week hospital stay cost has now exceeded $240,000. Not all of the related bills have come in so this number should go up. We don’t know what we’ll end up owing but so far we’ve been very happy with our insurance.

We only had the one bad experience of feeling like we needed to leave the hospital. Now that we understand that this is such a slow process and it’s so much related to monitoring it really doesn’t make sense to have stayed in the hospital.

During the last couple of days Ann has started to feel less and less of her pancreas acting up. She still feels it act up throughout the day but it’s getting less frequent. The improvement is measured by comparing how she felt a week ago and so far she is feeling better. This is a roller coater so it’s not always an improvement over the previous day. The better days are getting more frequent than the worse days.

Since the improvement is very slow I’ll probably start posting every other day or as things change. She remains weak and finds it difficult to talk. When she talks the tube rubs against the inside of her throat that it turns raw. Now that she doesn't have a spleen we don't want to take the chance that she gets an infection from an open sore in her throat.

All of your prayers have been working. Thank you so much.

Love,

Brian, Ann, and Ashley

Wednesday, March 16, 2005 8:47 PM CST

Not a lot of news to report. Ann remains in a recovery state. She continues to hang out on the sofa or bed. She’s hoping that her enzymes will go back down and stay there. Her back remains tender and so does the area of her abdomen where the pancreas is located.

She has been trying to eat her food by mouth and not by tube. Of course everything she has will continue to have a zero or minimal fat content.

We have a doctor’s appointment on Thursday afternoon. They’ll likely take blood so we’ll know Friday morning if eating without the use of the feeding tube changes anything.

The feeding tube really has to go. When Ann talks it gives her a extremely sore throat. It has also started to give her the sensation that she has a bad cold. This occurred when she first had it now she has the same problem with sneezing, teary eyes, and a runny nose.

I probably won’t post anything until Friday when we get the blood tests back. There really isn’t a lot to report on. Of course if something should change then I’ll let you know.

Thank you for all the prayers and taking the time to check up on Ann.

Love,

Brian, Ann, and Ashley

Tuesday, March 15, 2005 11:14 AM CST

It’s Tuesday morning; Ann feels that her pancreas has improved in the past 24 hours. She still feels it acting up but it’s not where it was yesterday morning.

Yesterday afternoon we made doctors appointments for this Thursday and for next Tuesday. Ann will have some more blood work done this Thursday and will be seeing a specialist on Tuesday.

So we’re moving forward. Yesterday it was determined to see a specialist because Ann’s enzymes bounced up in a manner that concerned the doctors. If they should go higher it will be much more concerning.

This whole situation has been odd because the enzymes get better and then all of a sudden turn around and get worse. The doctors typically see consistent and rapid improvement. This is especially the case if the patient is not taking in any food by mouth. In this case it doesn’t seem that the amount of food was 100% the culprit. The high dose of chemotherapy during the surgical procedure and the spreading open of Ann’s ribs not to mention opening up her complete abdomen is likely the cause of the inflammation of the pancreas.

Needless to say they don’t call this the MOAS surgery for nothing. MOAS is now the widely used term for this surgery. I believe it goes back to one of the first patients that went through the surgery and his wife called it Mother of All Surgeries. So if you’ve read any postings that mention the MOAS surgery it really isn’t a technical term but rather a realistic term to refer to it. The nurses we spoke to said this is as big and is as complicated as a surgery gets. It’s not surprising to see some issues during recovery.

Speaking of complications.....
About a week or two ago I mentioned we met with Jim Disney and his family as they were preparing for surgery the day we were leaving Omaha. It has now been 2 weeks and Jim still remains in intensive care. Ann spent three days in the intensive care unit. Even after what she has gone through she cannot imagine what Jim is going through in ICU. If you haven’t had the time please check out the link to Jim’s page below. If you could keep him in your prayers Ann would appreciate it.

Thank you for checking in, your prayers, and all of your postings. It is nice to know that people are keeping up with Ann’s progress.

Love,

Brian, Ann, and Ashley

Monday, March 14, 2005 3:34 PM CST

We got the results from the doctor’s office this morning. They weren’t good. It turns out that last Friday’s blood test indicated that the enzymes went up.

We’ve been on the phone with various doctors today including Creighton University and the Hubert Humphrey Cancer Center. We elected to cancel the afternoon appointment with Ann’s oncologist. She had also spoken to Creighton and they determined that it’s time to send Ann to someone that is more familiar with the pancreas.

So Ann has her feeding bag and pump back on. It wasn’t a good day. We’ll be scheduling blood tests with a different doctors office to try to resolve this thing. Ann felt pretty bad last night but by not taking food by mouth this morning and afternoon she feels like it cleared up.

It’s sort of a hit and miss problem. We’ll be making appointments for more blood work and with a specialist this afternoon.

I am also in discussions with others that have gone through the surgery and have had problems with the pancreas. We’ll get this figured out.

Thank you for checking in. Ann appreciates the prayers.

Love,

Brian, Ann, and Ashley

Sunday, March 13, 2005 9:14 PM CST

Ann had a pretty good weekend. We’re both hoping that the feeding tube will get removed this week. We’ll get the enzyme test from Friday’s blood work tomorrow morning.

We have an appointment with Ann’s local oncologist at 1:40. Ann has been eating fairly good food, all with no fat of course. At night she still stay’s on the tube feeding but for the most of the past two days she’s been able to eat enough during the day to keep her from feeling weak due to lack of food. She still feels VERY weak but this is more of a result of the 7 weeks of inactivity.

Her pancreas still flares up during the day. We haven’t yet figured it out if it’s from food or movement. It appears that it’s more movement related. She seems to notice it if she lifts anything more than a pound or two. It’s still hard to say but that’s what we’re thinking.

Anyhow, thanks for checking in. I’ll have something more to post after our visit with the doctor Monday afternoon. She'll go in for a CT scan the following week.

Ann is SLOOOWWLY getting better, thank you for the prayers.

Love,

Brian, Ann, and Ashley

Friday, March 11, 2005 7:41 PM CST

Ann wanted to let everyone know that she had a good day today. Not perfect yet but it was good.

We went to the doctor and they took her blood. We’ll know the results Monday before noon. The doctor’s nurse did call us from her home to let us know that Ann’s blood thinness was still in the correct range. She didn’t have the results of the enzyme tests.

Ann was able to eat quite a bit today including her first meat. She had a little tuna for a late lunch and she had the craving for grilled chicken. So I was out on the deck in the middle of this unbelievable snowstorm with the wind howling grilling you know what.

I wasn’t going to let a blinding snowstorm get in the way. Ann had grilled chicken. This was first meat she had in about 2 months. She would have preferred to have a nice grilled chicken with sauce from the commercial from the Olive Garden but she had to settle for mine. She doesn’t like going out with a tube up her nose, taped to her upper lip and face.

It’s really funny Ann knows every food commercial on TV. It’s like she has them memorized. At one time in Omaha we couldn’t watch TV because of all the food advertisements.

For the first time in 7 weeks she ate enough to feel the nice full feeling. Before when she was full from yogurt or soup she still had cravings. Today she ate enough with the variety that she felt satisfied.

She sometimes felt that the tube was never going to get out of her nose. Last night she felt good and for the most part of today her pancreas felt good. She’s starting to feel confident that she will be able to eat normally. Hopefully this feeling will last through the weekend.

Ann wants to thank everyone for your prayers. Things are looking better.

Love,

Brian, Ann, and Ashley

Thursday, March 10, 2005 10:31 PM CST

It’s been a quiet day at the Bentler household. Ann ate a little but stayed away from protein and any chance of fats.

She would like to get one more test that shows that eating apples, oranges, pears, tomatoes, and lettuce keeps her numbers down. While her last test showed that she was within normal range the numbers came in at the very highest end of the normal range. She doesn’t know what normal for her is. So we held off introducing any protein in her diet. She’d like to see if the enzymes go lower from the blood that was taken on Monday.

Ann has a blood test scheduled for 3:00 on Friday. We’ll know the results on Monday. As I’ve said before Ann is not eager to get the feeding tube out as long as she’s feeling the way she’s been feeling. She especially uses the feeding tube at night so she can get up in the morning and be able to unhook it for a while during the time she takes a shower and tries a little food.

She’s been taking it very slow around the house. She’s taking a shower but she’s not picking up or doing anything strenuous. She spends most of the day watching TV and reading. When she talks she gets a very sore throat.

Right now she feels pretty good. Her back doesn’t ache from the pancreas and she only felt a few twinges of the pancreas pain today.

Tomorrow she’s going to try oatmeal. Yippee.

This healing process is really slow going but we don’t have a choice. The doctors we’ve spoken to all say to stay away from anything that has fat in it. They also say to slowly introduce protein and most of all be careful. So that’s what we’re doing.

I added a link to an article that was published March 6, 2005. It's interesting to read about new and exciting treatments for cancers. You might find it interesting that the treatment Ann received is in the news.

Thanks for checking in and thank you for your thoughts and prayers.

Love,

Brian, Ann, and Ashley

Link removed: http://www.christie.nhs.uk/profinfo/departments/Pseudomyxoma/detailedinfo.htm

Wednesday, March 9, 2005 9:17 PM CST

So much for trying to figure out what Ann can and cannot eat. She paid the price last night. Today she had one orange. Her pancreas feels so much better when she doesn’t eat that she took the day off of eating.

Later this afternoon she was back to being able to lie on her back. We really don’t know what to expect in the coming weeks as just about any small amount of food makes her pancreas ache. She can definitely feel the pancreas act up. Right now at 9:30 at night she feels pretty good.

This is going to be a slow process that will likely be measured in weeks. It’s difficult to say if she’s getting better day-by-day. I’m sure she hates it when I ask her how she’s feeling. It’s more like Ann is better than she was a week ago. As long as she’s moving forward that’s the best we can ask for.

I’m starting to work with the insurance companies and trying to get caught up on calling the different clinics. During the month of October through January Ann had quite a few procedures. There’s a few billing issues but we’ll get em takin care of.

One thing is that Creighton University really has their billing down. We have never been miss-billed. I hate to mention insurance but I’m very thankful that Creighton has their act together. This will make my life so much easier.

Thanks for checking in and all the prayers.

Love,

Brian, Ann, and Ashley

Tuesday, March 8, 2005 11:37 PM CST

Late today we received Ann’s latest pancreas enzyme numbers. THEY ARE BOTH NORMAL. This is the news we've been waiting for. They've been elevated since Ann's surgery on January 25th.

She will remain on the tube feeding until she can eat a high protein low fat diet. I spoke with Creighton University and The Hubert Humphrey Cancer Center, they both agreed with this philosophy.

If she would start to eat any fat it is very likely that her enzymes will go back up. After 7 weeks we don’t want to take a chance that this could happen.

Her next test will be on Friday. By then she’ll have ate some high protein foods. We’ll review the results of her test with the oncologist on Monday. We’ll then try to make plans to remove the feeding tube. The tube has given her a very sore throat when she talks yet she’s really not eager to get it out until there’s proof that she can maintain a “close to” normal diet. Pizza and Vodka will be out of the picture for a month or two.

I hadn’t mentioned it before but alcohol is not a friend to the pancreas. So Ann will need to curb her alcohol intake for a while.

She still feels her pancreas acting up so she’s not out of the woods yet.

She was able to lay on her back for the first time in over a month. A bad pancreas will make a person’s back extremely sore. She was very happy to be able to lie down without having to be on her side.

At least we know that she is getting better.

Your prayers have been working, thank you so much.

Love,

Brian, Ann, and Ashley

Monday, March 7, 2005 9:54 PM CST

Ann felt weak but better today.

She ate a couple of oranges, a little VERY mild salsa with very small cut up pieces of lettuce, half a banana, a third of a pear, half a fat free yogurt, a couple of strawberries and a few sips of fat free chocolate milk.

We really don’t know if any of these things are good or bad for the pancreas. We’ve been told to stay away from fats and foods requiring any heavy digestion. We’ll tell from Ann’s pain and the enzyme numbers if we’re messing up. We’re trying to get Ann’s system used to regular food. The amount her stomach can hold is increasing. This is good and bad news. It’s starting to take a more food to satisfy her hunger.

The pancreas pain is subsiding. It's still there but she feels it's less intense. She’s starting to feel the pain from the surgery. She isn’t on any pain medications. She wants to know if her pancreas is acting up or not.

We’re looking forward to the getting the blood results Tuesday morning from the blood that was drawn today. Her next blood test will be Wednesday. If that looks good we’ll introduce some protein into her diet.

Once we know that Ann can have protein I’ll need to put together some dishes for her that have all the protein she needs to rebuild her muscle but no fat. If any of you have any 100% fat free dishes please e-mail me your recipes at bbentler@comcast.net.

We have a goal to get rid of the feeding tube and the constant blood tests that go with it within the next two weeks. One thing Ann does NOT want is to go through the process of having the tube removed only to have to have it reinserted through her nose.....Yuck.

Thank you for your prayers. They’ve been working as Ann is feeling that she’s going to get better.

Love,

Brian, Ann, and Ashley

Sunday, March 6, 2005 10:28 PM CST

Ann laid low today. She barely moved off the sofa. She was able to eat an orange and a fat free yogurt.

The reason she stayed off her feet was to avoid any major moving. She wanted to see if this would make a difference in the way her pancreas felt. When she went to bed this evening she mentioned that her pancreas felt the best it’s been.

Perhaps a day of total relaxation is what she needed. For the first time she was able to think that perhaps she will get rid of the feeding tube. She was actually excited to think that this might be possible. The doctors have told her that some people have to have a feeding tube for a very very long time.

We go to the doctor tomorrow afternoon for the blood work. We will not know the results until Tuesday morning.

Thank you for checking in and all the postings. The postings and individual e-mails have made a world of a difference in Ann’s recovery. I don’t know how many times Ann has asked me to read these to her or to hand her the computer to read them herself.

Please remember to check in with Jim’s link that I posted below. Ann has been VERY concerned about Jim as she knows first hand about some of the complications of this surgery. Being in intensive care is very tough. Ann still has a tough time thinking about that experience. Jim needs some prayers to get him out of there.

Thank you for the prayers. I won’t have an update that has any major news until Tuesday.

Love,

Brian, Ann, and Ashley

Saturday, March 5, 2005 7:58 PM CST

Saturday came and went. Ann felt pretty bad last night. She’s starting to understand how her pancreas feels. Yesterday she ate a banana, a yogurt and a cup of soup. She said she paid the price in her pancreas. She felt it get very sore.

Today, Saturday she didn’t eat a thing until 6:30 this evening when she had a half a can of tomato soup. Not eating helped her get back to the same feeling prior to eating yesterday. She still feels the pancreas acting up but not nearly as bad. Getting her on a normal diet will be a long process.

Yesterday we went to see Ann’s oncologist at the Humphrey Cancer Center. Ann is the fourth person who they have seen with this disease. The previous patients have all passed away. The doctor told us that Ann’s surgery is looked at as being EXTREMELY difficult and said that Ann would continue to have many complications….just what we wanted to hear. The local doctor is very interested in the procedure and in being part of Ann’s treatment yet she gave us an odd feeling of support yet she gave a perception that the surgery was full of risk. We had previously known that the previous patients all had died. We still don’t think there was much choice other than being aggressive.

Dr. Loggie wrote in Ann’s surgical reports that the chance of the disease reoccurrence is minimal. He was able to remove all visible disease and then gave Ann 90 minutes of high temperature chemotherapy wash throughout her abdomen. He doesn’t talk about cures yet felt that Ann will do very well.

If it weren’t for the inability to eat Ann actually would actually be doing quite well. She has an appetite, she’s constantly hungry. This is actually looked as being good. Doctors get a little concerned when a person is sick and has no appetite. Without food going into her stomach she feels like she’s starving yet the tube feeding gives her enough nutrients to allow her to move around the house. She is getting about 2000 calories a day and has actually put on a pound or two.

Ann really doesn’t have much muscle mass left. Prior to surgery she was walking 4-5 miles a day and working with weights. All of her muscle is now gone. When I say gone, I mean gone. Her calves have skin but there is nothing in there, it’s just sort of flabby. The nurses told us that the body uses up every bit of muscle during the healing process. Everyone told her to get in shape prior to surgery because her life might depend on it. Good thing she did.

If you’ve read the messages you’ll see that people that have this disease tend to stick together. They share experiences, treatments, and results so that others can learn. A person that was diagnosed a couple of weeks after Ann was a fellow by the name of Jim Disney.

I’ve included a link to a Caringbridge page for Jim. We were able to get to know Jim through the Internet and we met him on our last day in Omaha. Jim’s a great guy; he has a super wife and very good parents and in-laws. He’s a cop out of Pennsylvania that ended up with the same disease as Ann. His daughter has been treated for a brain tumor. His family has been through more than their share. Jim’s surgery was the day we got home. He’s had some life threatening complications that has us very concerned.

If you could say a prayer for him that would be great.

Love,

Brian, Ann, and Ashley

Friday, March 4, 2005 5:15 PM CST

We just received the results from Friday’s blood tests. It looks like the feeding tube will stay for the foreseeable future. Ann’s Amylase enzymes continue to come down and are actually within normal range.

The problem continues to be with her Lipase enzyme. As you might recall this enzyme is much more representative of the inflammation of the pancreas.

While it did come down the rate of change has decreased. It has almost leveled off. It’s only dropping a point a day. At this rate it’s going to take along time for her to eat regular food.

We also just received her powdered food so we’re set to allow her to keep the tube until at least Wednesday.

Ann has been concerned that if the feeding tube is pulled she will not be able to keep up with her daily nutrient needs by eating. Yesterday and today she ate some fat free yogurt and tomato soup. She gets full after a 1/2 container of yogurt. A half a cup of soup will also fill her up. She will need to eat constantly once her feeding tube is removed.

While Ann is improving the time it’s taking to get back to normal has been concerning.

Thanks for checking in. We have more blood tests scheduled for Monday afternoon. We will not have the results until Tuesday morning.

Thank you for all the prayers.

Love,

Brian, Ann, and Ashley

Wednesday, March 2, 2005 8:28 PM CST

We went to the doctor today. The results of the blood tests indicate that Ann’s pancreas is getting better but VERY slowly. One of her enzymes hasn’t come down in 7 days. Fortunately it’s Amylase, which is less of an indicator. Her Lipase numbers have come down yet remain elevated so she will remain on the feeding tube for the foreseeable future.

The home healthcare people dropped off more food for Ann so at least we won’t worry about running out. They messed up a shipment today so at one time it looked like they’d really have to scramble to get Ann nourishment.

The next day that we need to go to the doctor will be Friday. We already know that it is very likely that the feeding tube and the problems that go with it will last until next week. We’ve learned that the enzymes don’t drop that quickly. They tend to level off.

Her blood thickness is exactly where they want it so that is good news.

Thank you for checking in. Ann could still use a prayer or two. This thing won’t be over until she can eat normally.

Love,

Brian, Ann, and Ashley

Tuesday, March 1, 2005 11:48 AM CST

We made it home! We arrived at 9:00 last night. The trip took us 5-1/2 hours.

Ann still has the feeding tube. She was able to eat 1 yogurt yesterday. She is not 100%, far from it, but she slept the best she’s slept in 5-6 weeks. Tomorrow we’ll be seeing Ann’s local doctor and getting the blood tests scheduled.

Depending on the outcome we’ll have to run to the doctor at least every other day. If the numbers get worse we’ll be going to the doctor on a daily basis.

The home health care lady that was supposed to take care of Ann with the powdered food and the related accessories came down with the flu. Ann has a day of supplies so if we get everything by the morning we’ll be fine.

Ann’s pancreas has shown steady improvement yet we won’t be surprised if the trip home results in the numbers turning for the worse. Ann is becoming very much aware of the pain and did notice an increase in symptoms after the trip. She mentioned that had she been released a week earlier she would have had a very tough time making it home.

When we arrived home Uncle Buck (Jeff) and Ashley had the place spotless. They did a wonderful job getting the house ready for Ann with fresh cut flowers and her bed made up perfectly. It was very nice coming home to a fire in the fireplace, carpet all vacuumed, dishes all done, and no laundry. We filled it up quickly with all the home health care syringes, bags, containers, and prescriptions.

Prior to leaving we met another fellow that is scheduled for surgery for today. He was able to see one of Dr. Loggie’s longest patient. I don’t know if it helped Jim but at least he saw one of the patients with the one of the most complications. While we were talking we were waiting for Ann’s latest blood tests to come back. When it came in on track we wished the new patients luck and shed a few tears knowing and not knowing what was ahead for them.

One thing we weren’t able to do was to say good-bye to the hospital priests. With Ann feeling the way she’s felt and then I got sick we didn’t get to take a tour of Creighton University. We’ll stop by in 3-4 months and we’ll see if they remember her.

I’ll keep the site updated until Ann is eating.

Thank you for your wonderful support and of course the prayers. It gave Ann a lot of strength knowing that people cared.

Love,

Brian, Ann, and Ashley (all in St. Paul)

Monday, February 28, 2005 2:11 PM CST

The doctors have said that Ann can GO HOME!

She will still have her feeding tube in place while she starts to eat yogurt today. On Wednesday her doctor in Minneapolis will test her blood. If the numbers continue to improve she’ll get to eat more substantial food. Only after her numbers are normal will the feeding tube be removed.

So you could say that the room will change to really home health care.

We are currently waiting for the pump from the St. Paul office to arrive. Once it and additional powdered food arrives we’ll be out of here.

See you later.

Thank you; thank you for all the prayers.

Love,

Brian, Ann, and Ashley

Saturday, February 26, 2005 7:38 PM CST

It’s been a quiet day in Om-A-HA HA.

This is such an uncommon disease that the people who get it or their caregivers seem to like to share their experiences with others.

During the time we’ve been here we’ve met a number of Dr. Loggie patients. Today we said good-bye to a couple from Georgia. Last week we said good-bye to a couple from Denver, and the week before it was a couple from Vermont.

The fellow that we said goodbye to today had completed his second MOAS with Dr. Loggie one week prior to Ann. The first surgery was 5 years ago. We’re happy that they’re on their way home. They have a 6-year-old waiting for them. We understand how difficult it can be to be away from home when you have kids.

I mentioned this because I want to assure people that Ann has not been the only one that has experienced an extended stay. What’s rare with Ann is that the pancreas normally doesn’t take this long to get better.

So we sit here and wait for Ann to be able to eat. We do expect it to get better this week so we can get to monitoring at home. Ann’s heard this before and she doesn’t like it when I think we can get home in a week. So don’t tell her I wrote this.

We thinking of starting a lottery to guess how much this operation and related care will cost over a 9 week period. Let’s see:

1-day hospital prep
1 day Operating room (10 hours actual surgery)
3 days intensive care
17 days in recovery ($10 K just for IV food)
12 days continued blood tests and at home (hotel) Feed Tube feeding formula with related pumps and bags.
11 prescriptions

Email me your guess. The total costs will be compiled as of March 31. The person closest to the amount will receive dinner with Ann on April 1.

Thank you for checking in and for your continued thoughts and prayers.

Love,

Brian, Ann, and Ashley

Saturday, February 26, 2005 7:21 PM CST

Friday, February 25, 2005 3:22 PM CST

Our stay in Omaha was extended over the weekend.

Dr. Loggie and Ann both agreed that it wouldn’t be best to send her home with a chance that something falls through the cracks. The goal is to ensure she can tolerate a limited diet before she goes home.

While we have been trying to get Ann accustomed to driving for 1-3 hours a day it still takes a toll on her. If she were to fly or drive home and then have to come back she doesn’t think her system could handle it. It’s safest for her to stay. Like Ann said, what’s 3-4 more days when it’s already has been so long.

Good thing I did the wash last night.

Her enzyme levels remain about 2X higher than where they should be. The good news is that they have leveled back off and appear to be back on the trend to drift lower.

The blood clot will remain a concern for a while. Blood tests and CT scans will be used to monitor it for around 6 months. Her daily amount of drug will remain as prescribed.

Today we spent about 3-4 hours at the hospital getting blood work done, waiting for results, and discussing treatment options both here and at home. The goal is to get the enzymes to normalize. Seeing them come back up without changes to her diet or medication continues to concern the doctors. This type of pancreas roller coaster is unusual. This is close to one of the longest pancreas problems that they have experienced. At least the bumps are getting smaller and the trend has turned back to favorable.

The next blood test is scheduled for Monday am. We have an appointment with the doctor on Monday at 1:00.

Spending the time out and about does tire Ann out. She immediately fell asleep once she got back to the hotel. Before she fell asleep she was happy to hear that Ashley had plans for the weekend and is doing well without her parents around.

Thank you for your continued thoughts and prayers.

Love,

Brian, Ann, and Ashley

Thursday, February 24, 2005 6:02 PM CST

Not a lot to report on today.

We’re hoping that tomorrow’s blood work indicates that the blood thickness and blood clot reducing ratio’s are in the correct range. Dr. Loggie does find it acceptable to send people home with the feeding tube as long as the pancreas is under control. Right now it appears that he is more concerned about getting the blood thickness correct.

So we’ll know more tomorrow.

Today I took Ann on another 2-3 hour drive. At least we’re getting out of the hotel.

I didn’t mention it previously but on Monday I started to show signs of bronchitis. Ann’s doctors hooked me up with some antibiotics. I’m pretty much back to normal.

Ann has grown quite tired of the feeding tube and is hungry all the time. It has gotten old. We’re looking forward to the blood test results with hope and apprehension. We know that sooner or later it has to be on track. Might as well be Friday’s results right?

I have to run and do the wash. We didn’t pack thinking that we’d be here 5-7 weeks.

Thank you for your continued interest and prayers.

Love,

Brian, Ann, and Ashley

Wednesday, February 23, 2005 7:08 PM CST

As Ann had expected the pancreas enzymes came back up. They’re back to where they were 3 days ago. We had expected that we’d take a step backward one of these days. The trend is back up although not as steep as it was before and the numbers are much lower. It’d just be nice if they just came down to normal. Then it’d be great if they stayed there.

We’re also back to trying to work on getting her blood thinned properly. This morning’s blood work indicated that her blood wasn’t thinning as much as they had expected. To solve this they increased the amount of drug and will monitor it every 2 days.

It’s starting to appear that the doctors are now more concerned about stabilizing her blood thickness before she’s allowed to go home. The next test is on Friday. We won’t know if we’re spending the weekend in Omaha until we know the results of the Friday test. It looks like they’d send her home with the feeding tube and pump if the blood gets to the proper thickness.

My fever went away today so Ann and myself went for a tour of Counsel Bluff’s historical areas. If a person were into Railroads this would be like Disneyland. Counsel Bluff takes its pride in being the Eastern gate of the transcontinental railroad.

We spent about 2-3 hours driving around. It was nice to get out of the hotel room. Getting out and walking with the pump, the food bag, the tubes up her nose and taped to her upper lip and face is not the most comfortable for Ann. We just stayed in the car and toured the town.

The days are starting to feel like the movie “Groundhog Day”. Everyday is the same with just a few twists to make you wonder if you did something more correct than the previous day. Who knows, someday we might get it right.

Thanks again for checking in.

Love,

Brian, Ann, and Ashley

Tuesday, February 22, 2005 6:06 PM CST

Ann received encouraging news from the doctors today.

Her pancreas enzymes are back to where they were on Feb 5th. This is very good news. We have now seen 5 days of steadily dropping enzyme levels. This might sound boring to you but to Ann it’s music to her ears. Please remember that if they had continued to go up she’d run the risk of losing her intestines. This has occurred so it has been quite concerning when we were watching them continue to go up 3 weeks post surgery. If the numbers continue to drop she’ll be able to have her feeding tube removed tomorrow.

She might be able to actually eat her first food in over four weeks. Ann is apprehensive about eating. She just doesn’t want to have this problem come back.

I’m continuing to have a slight fever so we’ve stayed away from each other. We’ve had a home healthcare person come to the hotel to work with Ann.

I’m looking forward to shaking this bug so I can get back to taking care of her. Both Ann and myself received the flu vaccine. The Internet says that the flu virus that's going around is one that’s not covered by the vaccine. I guess it’s some sort of variant that will last from 5-7 days. So far I’ve had it for 4-5 days. We are doing everything possible to ensure Ann doesn’t get it.

The blood thickness appears to be about right. The blood tests used to measure the thickness of her blood have come in where the doctor would like to see them. Ann shouldn’t need to increase the amount of medication to thin her blood.

Thank you for your continued prayers.

Love,

Brian, Ann, and Ashley

Tuesday, February 22, 2005 6:03 PM CST

Ann received encouraging news from the doctors today.

Her pancreas enzymes are back to where they were on Feb 5th. This is very good news. We have now seen 5 days of steadily dropping enzyme levels. This might sound boring to you but to Ann it’s music to her ears. Please remember that if they had continued to go up she’d run the risk of losing her intestines. This has occurred so it has been quite concerning when we were watching them continue to go up 3 weeks post surgery. If the numbers continue to drop she’ll be able to have her feeding tube removed tomorrow.

She might be able to actually eat her first food in over four weeks. Ann is apprehensive about eating. She just doesn’t want to have this problem come back.

I’m continuing to have a slight fever so we’ve stayed away from each other. We’ve had a home healthcare person come to the hotel to work with Ann.

I’m looking forward to shaking this bug so I can get back to taking care of her. Both Ann and myself received the flu vaccine. The Internet says that the flu virus that’s not covered by the vaccine. I guess it’s some sort of variant that will last from 5-7 days. So far I’ve had it for 4-5 days. We are doing everything possible to ensure Ann doesn’t get it.

The blood thickness appears to be about right. The blood tests used to measure the thickness of her blood have come in where the doctor would like to see them. Ann shouldn’t need to increase the amount of medication to thin her blood.

Thank you for your continued prayers.

Love,

Brian, Ann, and Ashley

Monday, February 21, 2005 12:29 AM CST

Sorry for not posting yesterday.

I spent the last three days in bed quarantined from Ann and the computer in her room. I’ve had a temperature over 100. It’s back to normal now but to be safe I’ll be spending one more night in a different room. Since Ann doesn’t have a spleen anymore we didn’t want to take any chances.

Another concern is that bacteria will settle in blood clots. This could lead to sepsis. To prevent this Ann is on antibiotics. She just started taking them on Friday. We didn’t know what I had we just wanted to play it as safe as possible.

The diet coke in the feeding tube ended up clearing the clog. Ann is back on the liquid diet via her feeding tube. This could be looked as good news. If it remained clogged they probably would have had to put a new one in.

Ann was hoping that the tube would be removed for her birthday. Unfortunately, since it‘s working the doctors want to leave it in until the pancreas numbers are normal.

The pancreas has shown signs of improvement. The numbers have come down for the past three days in a row. We are cautiously optimistic. At the rate they’re coming down it’ll take about a week to get to normal. The problem is that sooner or later they’ll jump back up so we’ll lose a couple of days.

Since I’ve been sick Ann has been going into the doctor by herself. She’s getting stronger.

Thank you for the kind thoughts and prayers.

HAPPY BIRTHDAY ANN

Love,

Brian, and Ashley

Saturday, February 19, 2005 10:22 PM CST

Sorry about not posting any updates earlier. I ended up getting a fever Friday evening and spent Saturday in bed. Ash wasn’t feeling to good herself so to make sure that Ann didn’t get sick Ashley and myself stayed across the hall in a different room.

I’m feeling better.

Ann went into the hospital by herself to get some blood drawn for blood thickness testing and to repeat the pancreas enzyme testing. We won’t know the results until Monday.

This morning while giving Ann her drugs down her feeding tube one of the nine prescriptions ended up clogging it.

We tried the secret unclogging methods including using diet Coke. Nothing worked. So for today and tomorrow Ann is surviving on fortified juice boxes. Depending on her pancreas results on Monday the doctors will either pull the tube and replace it or put her on a fortified liquid diet.

Thank you for checking in. It is very difficult to get sick while taking care of a sick person. Today Ann was the healthiest of us three. She did really well taking care of herself.

Thank you for the kind thoughts and prayers.

Love,

Brian, Ann, and Ashley

Friday, February 18, 2005 2:49 PM CST

Good news and bad new:

Good news:
The pancreas duct is better than it was a week ago. The enzymes in the blood appear to be leveling off. I don’t want to say that they’re going down but we did see a very minor improvement. In the past when we have seen them go down they’ve come back up. So we continue to hold our breath.

Now the bad news…..
Ann ended up with a blood clot. The clot is related to the removal of her spleen and was also likely caused from the inflammation from the pancreas and the other organs messed around with during surgery..

While surgery is unlikely she does have to immediately start taking antibiotics and blood thinning medication.

For those doctors out there:
The blood clot is located in the portal vein leading into the liver. She’ll be taking coumadin. I don’t know if I spelled that correctly. It’s also known as Warfarin. She’ll start at 5mg per day.

We’ll be staying in Omaha until they can ensure her blood gets thin but not to thin.

For the PMP Bellybutton pals:
If your reading this and have surgery scheduled in the future you might want to take a note to have the docs perform an ultra sound on this vein prior to discharge.

It seems all the things that aren’t that common have been occurring to Ann. Once this is over I’ll have to write up a cheat sheet for what tests and drugs to ask for and post it on the Bellybutton Club website.

We have met a number of the other recent patients and they appear to be doing well. They have either gone home or will be going home shortly. Many of them had surgery after Ann. It appears that once in a while someone gets the problems so the doctors get to keep learning.

We’re looking forward to our favorite daughter coming down this evening. It’s supposed to rain but I’m sure the malls won’t close.

Thank you for checking and continued prayers. The bright side of today was that the doctor decided to take another scan and another doctor looked around more than at the pancreas duct. If the pancreas problem didn’t occur the clot would not have been found. So everything happens for a reason. We get to be here another week and Ann remains taking her meds and her food via her tube.

Love,

Brian, Ann, and Ashley

Friday, February 18, 2005 7:57 AM CST

No news.

Ann had some blood drawn late yesterday and will be having the ultrasound this morning at 10:00. This might determine if a stent is required or if additional surgery is needed.

We went out for about 3 hours yesterday. She ended up getting very weak.

We made arrangements for Ashley to fly down this evening for the weekend.

We’ll know the results of the ultrasound and the latest blood work this afternoon.

Thanks for checking in. We are praying that the pancreas gets better (without further medical procedures) so that Ann can eat regular food.

Love,

Brian, Ann, and Ashley

Wednesday, February 16, 2005 9:17 PM CST

We got the word late today that the pancreas hasn’t improved. The most important enzyme stayed at the same level as it was 36 hours ago. This could be looked as good news. The problem is that the other enzyme that is less of a marker, but still very important went up (quite a bit). So things continued to get worse.

We’re set for another test on Thursday afternoon. The doctors are going to repeat the ultra sound that they did a week ago. They’ll compare the one taken a week ago to the one that will be taken on Thursday.

They’ll be looking for any constrictions within the openings where the gall bladder and the pancreas empty into the upper part of the small intestine. We may not have the results until Friday morning. It might not even be until Monday before the options are discussed with Ann. What they find may have a major impact on the next course of treatment.

It is unlikely that we’ll get out of Omaha this weekend. Miracles happen so I will not rule it out but it is unlikely.

We took another car ride this evening. We’re trying to get Ann used to riding in a sitting position. We spent a total of 2 hours today driving around. Ann walked for a total of 60 minutes.

Ann continues to be bothered by the feeding tube and is extremely weak. She pushes herself by climbing 3 stories a couple of times a day. I don't mean to sound like she dosen't have a tough time but she's doing it without prompting from me.

I probably won’t post an update until after 5:00 on Thursday. It won’t be until late Thursday or perhaps Friday that I’ll be able to say if anything has changed.

Thank you for the prayers and for checking in.

Love,

Brian, Ann, and Ashley

Wednesday, February 16, 2005 1:55 PM CST

Day 2 in at The Park Inn brings more crushing of meds and mixing of powders for Ann’s feeding tube.

Ann took a shower this morning all by herself. In the past someone else has always had to be in the room in case she became weak.

We went the doctor’s office and had her blood drawn for enzyme testing. We don’t know the results but if they’re elevated we stay in Omaha over the weekend. If they go down we retest on Friday. If Friday’s enzyme level goes down then we’ll go home Saturday morning.

If either day is up we’ll need to stay in Omaha. We need to ensure the trend is down in order for us to leave.

This afternoon I went for an hour drive with Ann to see how she’d do in Grandpa Bob’s minivan that he left for us to use. After one hour Ann asked to go back to the hotel where she immediately fell asleep. Even a ride in the car can be tiring.

The feeding tube remains a major pain for Ann’s nose. Besides the runny nose when she sneezes she gets a bloody nose.

So we don’t know where we’ll end up. That’s just the way it is.

Thanks for the prayers. I’ll post the enzyme results as soon as the doc calls my cell phone.

Love,

Brian, Ann, and Ashley

Tuesday, February 15, 2005 12:03 AM CST

Ann officially checked out of the hospital at 10:00pm on Valentines Day. We had tried to stay the night. If we had we would have run the risk that that the insurance company would not have paid for the extra night because the paperwork was written up for the discharge to happen that day.

Prior to getting discharged I went out and got all the prescriptions, got trained on tube feeding, and made up a comfortable bed for Ann.

Since it was so late we ended up going to the hotel across the street. We have a handicapped equipped room on the first floor. It works out rather nice for doing the wash and running out to Bob’s van. Hopefully we won’t be here long.

Ann will likely have the feeding tube for a number of weeks. She can talk but gets very sore when she does.

We sorta have today off. We don’t have any blood tests until Wednesday. We’re hoping that Ann’s pancreas enzymes will be reaching a plateau. The trend is still up but not quite as steep.

We’re in the process of planning for home care in St. Paul starting on Monday. Home care means that they deliver food in a powder, an IV style bag and a pump to pump it in. Yours truly will do all the mixing and crushing of the meds. Once every other day or perhaps every day Ann will go to a local doctor to get blood drawn and see how her pancreas is. She will not be allowed to eat any food until the pancreas enzymes are back to normal.

Ann is not taking any pain meds but remains with a very runny nose and teary eyes from the tube. Overall she feels like she has a very, very bad cold and is very weak. She is on antihistamines to try to help. They’re not doing that great of a job.

We learned that Dr. Loggie is very concerned about treating the pancreas carefully. He had some patients that did not follow his recommendations and went back immediately to regular diet. The pancreas flared up and ended up causing major problems for them. In one case it was just about fatal. He does not want to see this happen again (either do we).

Thank you for the prayers. Getting out of the hospital is one step to getting home.

Love,

Brian, Ann, and Ashley

Monday, February 14, 2005 1:37 PM CST

HAPPY VALENTINES DAY

Ann is not getting that much better. Her enzyme levels continue to increase.

To try to stop the upward trend she has tried 2 days of either eating, not eating, drinking only water, not drinking any liquids. reduced her medication, went to tube feeding, and eliminated IV feeding.

I keep a Microsoft Excel chart to track her enzyme levels. There does not seem to be any correlation to what she does.

The doctors really don’t know why her pancreas enzymes continue to increase. Today she is back on a clear only diet. Tomorrow we’ll try adding tomato soup back in.

Dr. Loggie has been taking a VERY conservative approach in regards to the pancreas. The textbooks (and internet sites) all say to treat the pancreas with kit gloves and that is what he and Ann have been doing.

It looks like the insurance people are starting to “encourage” the hospital to get Ann in a local hotel where a home health care person will come in and work with her medications and feeding. We’re not all that excited about this yet what can you do?

Since Ann can walk, and bathe the insurance people want to get her out of the hospital. We knew this would happen sooner than later. This might be looked at as good news but please keep in mind that her pancreas continues to show that something isn’t right.

So either late today or tomorrow we will be exchanging rooms to a local hotel. I’m not certain what hotel we will end up at. The staff here seems to like the hotel across the street. There are a lot nicer hotels in the area. This hotel does allow much easier transportation if any blood work needs to get done.

We will not leave Omaha until we know that Ann won’t have any further complications.

Ann doesn’t look at moving to a hotel as a step forward. It’s more of a status quo. The bed will change and so will the view. We have had a nice view from the hospital room. We just hope it’s not a step backward.

Thank you for the prayers. We’ll know in the next couple of hours where we’ll spend this evening.

Love,

Brian, Ann, and Ashley

Sunday, February 13, 2005 10:41 AM CST

Ashley’s on her way to St. Paul and it looks like we’ll be extending our stay in Omaha.

We got the results of Ann latest pancreas test. The enzyme levels are back to where they were 3 days ago. So much for a downward trend.

Ann is now trying to walk every hour. The doctor said that if she didn’t get up and walk she ran a good risk of getting a blood clot.

Ann is alert, off of pain medication, and on a reduced amount of nausea medication. She feels better today.

In the past 3 weeks Ann has lost 13 pounds. “Skinny Annie” is skinny.

Not a lot else to report on. Thank you for the prayers. The doctor says this will improve.

Love,

Brian, Ann, and Ashley (in Iowa, heading home)

Saturday, February 12, 2005 5:58 PM CST

Yesterday I mentioned that the blood tests wouldn’t be done until Monday. This morning to our surprise they took another test and the enzymes were back up. Pretty close where they were 2 days ago.

This roller coaster was expected, just so they don’t go higher. Ann has been able to walk today. This is the first time in 2 days. She is also drinking water.

We had been thinking that the less that passes through the stomach would be better. It appears not to have made a difference. Today we’re taking the approach to try to flush Ann’s system with plenty of water. Some of the doctors say the enzyme production is based on the amount of fat a person eats. Ann has been staying away from anything that the stomach would digest. We’re just trying to do whatever we think is right to get out of the hospital without violating any of the doctors orders.

Ashley spent today with mom. Not exactly visiting because it is difficult for Ann to talk. We are very thankful that we have a daughter that is willing to ride for 12 hours to be with her mom. We are also very thankful for the offers to bring her down.

Ash did some homework and talked a little about school and friends while I went through the 3 weeks of mail she brought down. Just having the three of us in the same room felt good. We also visited a little with a couple of the priests that often visit Ann and with our neighbors that brought Ashley down.

I don’t mention names because I’m afraid that I’ll forget someone or that people will think why I mentioned someone who did something when they had also offered. Ann and myself are TRULY thankful for all the help and the offers. The way this is going we might need help from all of you. Hang in there with us and you’ll get a turn, trust me. Gotta spread the love around a little bit, right?

Hopefully these updates will come less frequently after this week. Sorry to disappoint you but I’m planning to slow up the postings once we get home. I hope we get home in 7 days because that’s when the clean underwear and clean socks run out. Don’t you just hate re-wearing underwear…..That’s to disgusting to even think about.

Thank you for the prayers today.

Love,

Brian, Ann, and Ashley (in Omaha)

Friday, February 11, 2005 12:37 AM CST

It looks like Ann will have the food tube in until we can prove that she can digest food. It will also need to stay in place until she can take in as many calories as she needs. It took one person that had a similar (not the same) problem 30 days to improve.

This morning Lipase counts came down and last night the Amylase counts came down. I don’t have today’s Amylase counts yet. This was the first decrease in 5-7 days. While this is positive news the doctors expect that the number will go up and down over the next few days. She will not have any tests done until Monday. The doctors feel that since the counts will go up and down over the next few days so it doesn’t really matter now. They feel that Ann’s counts have reached a plateau. As mentioned previously, having them come down to a controlled normal level will take days if not weeks.

The feed tube has caused Ann major discomfort. She has an unbelievable runny nose and will sneeze for 15 times in a row at multiple times. Last night she hardly slept (and either did I) do to the constant sneezing.

So far this morning she hasn’t sneezed for the past 5 hours. We’re hoping that her nose will get use to the tube.

With the exception of going to the restroom, Ann hasn’t been out of bed for the past 2-3 days. She is on 24 hour feed right now. She has not even had a sip of water for over 2 days.

Yesterday her nausea was likely the result of the method her medication was delivered.

They prepare the medication by pounding it up with a hammer device, then mix it with water and put the mixture in a large syringe. This mixture is then squirted down the feed tube. The water and medication was so much that it backfilled into her stomach. Since she last ate about 3 weeks her stomach is easily filled. The amount of liquid in her stomach was so much that she felt extremely bloated and ended up with heartburn and nausea.

Ann has now requested that all medication with the exception of the anti-inflammatories be stopped. Her level of pain has increased yet she is less nauseated. It doesn’t make sense to get more nauseated form anti-nausea medication but that’s what happened.

Ashley will be coming down with one of her friends to see her mom this Saturday.

I mentioned in yesterdays posting Brenda Sweet would like to put together another day of prayer for Ann for this Saturday. If you are interested please contact her at:

sweetbrendak@msn.com.

Ann realizes that there are many people praying for her daily.

Thank you very much for checking in. Dr. Loggie is being very optimistic on getting the pancreas under control. He mentioned that this will be a very difficult time for Ann to get through.

She appreciates the prayers.

Love,

Brian, Ann, and Ashley

Thursday, February 10, 2005 11:24 AM CST

PLEASE SEE BOTTOM FOR LATE AFTERNOON UPDATE AND FOR INFORMATION ON A PRAYER DAY FOR ANN.........

The pancreas is not getting better. Overnight it continued to get worse. Lipase went from 179 to 215 and Amylase went from 135 to 150. Both have shown a very steady increase.

Ann is scheduled for an ultrasound test later today. The liver seems to be working fine. The doctors want to double-check the area where the pancreas is located. They’ll be looking for anything out of the ordinary.

Ann is unable to talk with the tube down her throat.

Earlier this morning they took out the IV that had been in the vein in her neck. We’re happing to get rid of the IV’s. Now if she could get rid of the VERY uncomfortable tube in her nose.

.....4:45pm UPDATE....

Ann passed the ultrasound test. The test showed that her pancreas looks fine and the connecting plumbing to the intestinal track is correct. This was VERY big news. While this was expected if it didn’t look right Ann would have been faced with another surgery.

She remains EXTREMELY weak. We’re told this is a result of the healing of her surgical wound. The incision is very big and the body uses all it’s reserves to try to heal. Ann has healed very well and has lost A LOT of muscle mass during the process.

She thinks she’ll be able to walk tomorrow.

They are now taking blood tests twice per day. They just took the last one about 20 minutes ago.

Ashley will be coming down tomorrow evening. She’ll be able to spend a couple of hours on Saturday with Ann.

Thank you for checking in. Prayers are always welcome.

Speaking of Prayers........

Brenda (bless her heart) Sweet would like to put together another prayer day for Ann. The day would be this coming Saturday, Feb 12. If you're interested in signing up for a time please contact her at sweetbrendak@msn.com. I’ve discussed this with Ann and she would appreciate it. Ann knows and feels that she is being prayed for often.

Please designate 2-3 times that would work for you and Brenda will get back to you with what time is available.

Love,

Brian, Ann, and Ashley

Wednesday, February 9, 2005 11:54 AM CST

EVENING UPDATE CAN BE FOUND AT THE END OF THIS JOURNAL ENTRY.

Not good news.

Ann’s pancreas continues to show indications of being overly active. It should have shown signs of improvement by now. Overnight it got worse, and is now at the worse stage it’s been.

In order to try something different the doctors have decided to remove the IV feed that goes directly into her heart and replace it with a feeding tube that will go directly into her gastric intestinal tract. This will go through her nose, directly to her small intestine. It’ll bypass her stomach and her pancreas.

Now she won’t even be allowed Popsicles. Only ice chips. The food concoction that she’ll receive consists of food that has been chemically digested. If you had to eat it it’d be like competing on Fear Factor. At least this is how I understood the doctors when they said no one could possibly actually eat this stuff.

The IV feed that she has been on stresses out the liver and could lead to sepsis if it’s left in. The neck IV has been in over 2 weeks so it’s time to come out. Sepsis is a term used when bacteria gets into the blood stream. This leads to a poisoning which can lead to major complications.

Ann is not in the best of spirits. It’s starting to get old. We’re praying that this will make a major improvement.

The doctor has not seen a pancreas behave in this manner. She doesn’t have a fever and her liver and kidneys are working well. The elevated enzymes are starting to make her feel nauseous.

So we’re moving backwards and we’re starting to get a little concerned.

Ashley might come down for a day or two.

Thank you for checking in. A couple of prayers wouldn’t hurt.

Love,

Brian, Ann, and Ashley

EVENING UPDATE......

Ann is now “eating” using both feed tubes. Right now she’s using up the last of the IV food (the $1000.00 / day meal) and getting direct nourishment into her small intestine.

The procedure went well. The doctor in radiology said it could not have gone better. The procedure and drugs left Ann very sleepy. She didn’t get out to walk or exercise today. It’s hard to get around with a tube in your neck and a tube in your nose.

Ann can talk very softly. She would much rather write down what she needs.

Thank you all for the prayers, and kind words and thoughts of encouragement.

We're looking for improved numbers in the next couple of days.

Tuesday, February 8, 2005 11:43 AM CST

Tuesday morning brings no major news.

The pancreas enzyme counts came in this morning. They remain elevated and overnight they actually got worse.

Yesterday Ann had one juice box that was fortified with vitamins. Today she’s going to “treat” herself to 3 cherry Popsicles.

The nurses have seen this reaction before. The previous patients have taken 3-30 days to get better. Yes, it took one person a month. So we might be here for a while.

If Ann were to be discharged she would go home, start eating and within a day she’d complain of a severe stomachache, start vomiting and would need to be readmitted to the hospital.

Everyone tells us it’s best just to stay here and let the pancreas rest as much as possible. The earliest we’ll get home is next Tuesday.

If you’re into healthcare by numbers here’s the details:

Lipase Enzyme desired range is 0-60:

Date u/L Diet
1/30 124 Liquid diet
1/31 156 Liquid diet
2/1 98 Semi-solid food introduced
2/2 121 Semi-solid food
2/3 139 Back to strictly clear diet
2/4 100 Remain on clear diet
2/5 115 Fortified juice boxes -3
2/6 137 Fortified juice boxes - 3
2/7 125 Fortified juice boxes - 1
2/8 150 start to eat only Popsicles (yum yum)

Amylase Enzyme desired range is 28-100:

Date IU/L Diet
1/30 93 Liquid diet
1/31 110 Liquid diet
2/1 79 Semi-solid food introduced
2/2 109 Semi-solid food
2/3 114 Back to strictly clear diet
2/4 90 Remain on clear diet
2/5 118 Fortified juice boxes - 3
2/6 123 Fortified juice boxes 3 -
2/7 110 Fortified juice boxes 1 9 (yum yum)
2/8 126 start to eat only Popsicles

So the walks, the drugs, and lack of sleep will continue. We know the top floor of the hospital pretty good. Right now she’s over riding the stationary bicycle. Who knows by the time we get out maybe she will be ready for tour de France.

Today we’re not only praying for Ann but also another patient who Dr. Loggie is performing surgery. For a while we will be affected by Tuesday’s because we know what this day brings to so many families. Last Tuesday Dr. Loggie worked for 14 hours on a patient.

We’ve heard that Ashley’s virus she picked up is getting better. Ann is very happy to hear that.

Ann did have some fun yesterday. In previous posts I’ve mentioned this thing called a spirometer. Prior to surgery Ann was able to inhale 2.25 Liters of air. Right now she’s doing about 2.1 L. It’d take a person with VERY big lungs to inhale 5L. Everyone here knows what a pain this thing is and have only seen 1-2 people inhale 5L.

Somehow we ended up with 2 of these gadgets in the room. With a little surgical tape I was able to modify one so that even a baby could show that they can inhale 5 L of air.

Yesterday as people stopped by Ann and myself would move the conversation to talking about the spirometer. We’d talk about how difficult it is and then I’d say that Ann has been working REALLY hard at improving. Then I’ll hand Ann the modified one to demonstrate her lung capacity. She’ll pretend that she’s getting all psyched up, will exhale and then slowly suck in using the modified spirometer.

WELL, you should see the look on people’s faces when Ann sucks in 5 L of air. Their eyes bug out, mouths drop open, and just about everyone exclaims “OH, my GOODNESS”!! It’s like their looking at a Super Human, not some 40-year old lady. We’ve pulled this on visitors, nurses, doctors, and priests.

After they step back in utter amazement I swear them to secrecy and let them in on the joke. We’ve had to stop pulling it on people because Ann starts to laugh so much it hurts.

Thank you for checking in. Ann appreciates the continued prayers and the help at home with Ashley.

While Ann is a little troubled by not being able to get out she remains VERY thankful for your prayers, her angels, and Jesus for how well the surgery went.

Love,

Brian, Ann, and Ashley

Monday, February 7, 2005 9:13 AM CST

Monday morning brings no major news. Ann remains on the $1000.00/day liquid diet. The pancreas enzyme counts came in this morning. They remain elevated. They do show signs of improving along with her liver function.

The liver and the pancreas were affected by the chemotherapy that she received during surgery. Ann’s body had a stronger reaction to the drug than what many people have. What she’s experiencing isn’t that abnormal it just happens in some people.

Rather than run the risk of further complications the doctor says that she’ll need to stay on the IV feed until it drops.

So the walks and the drugs will continue. She’ll get over to the exercise room later this afternoon and do the stationary bike for 10 minutes, take a shower, and relax. Riding the stationary bike for 10 minutes isn’t like she’s prepping for the tour de France. It’s more to get motion back to help reorganize her insides back to normal.

Taking a shower is about 1 hour long process. It takes time to cover the wound, unplug the IV lines, and hook it all up again.

Because of the constant feed it’s required that she have her blood sugar checked every 4 hours. The feed changeover is now occurring in the middle of the night, so uninterrupted sleep is a thing of the past.

This will extend our stay in the hospital for at 1-2 days. If everything goes perfect from here we will still have 4-5 more days in the hospital. Followed by 3 days at a local hotel. This would get us home on Sunday. Realistically the way it’s going I don’t think we’ll leave Omaha for at least another 7 days.

Thank you for checking in. Ann appreciates the continued prayers. We also appreciate all the help we’ve received. Especially the help that Ashley has received to help her maintain a normal life while both of us are away from home. We owe a lot to the people that have made this possible. Thank you.

Love,

Brian, Ann, and Ashley

Sunday, February 6, 2005 10:01 AM CST

Sunday morning brings no major news. Dr. Loggie and a doctor that works for him, Dr. Murray already stopped by. I think it’s Superbowl weekend and they want to get out of here.

Ann will be remaining on the liquid in the bag and through the vein diet. The pancreas counts came in about 30 minutes ago.

Her Lipase is at 137 (desired is 60). Amylase is at 123 (desired is below 100). Yesterday she had 3 juice boxes and one Eucharist. Ann was concerned that the Eucharist pushed her counts up but the doctor said not a chance.

This will extend our stay in the hospital for at 1-2 days. If everything goes perfect from here we will still have 4-5 more days in the hospital.

I wish I had some exciting stories to tell. Ann’s day consists of drugs on the 6’s, 9’s, 12’s, and 3’s, walking a little bit, breathing into the spirometer, and telling me to turn up and down the thermostat.

Ann feels the best she has since the surgery. She says she is getting very tired of this whole thing. Her eyes seem to be tired from the medication so it’s difficult for her to read. She is walking (ever so slowly). She can talk and laugh with the nurses and the priests that stop by.

Today, we’ll be watching the Superbowl from the fifth floor of the Creighton Hilton. No, this isn’t exactly the Hilton that President Bush stayed at 3 nights ago. We'll be missing the annual neigborhood gathering.

But we do have pretty high expenses for food and drink. The daily cost, just for the Gatorade in the sack and the milkshake in the bottle is close to $1,000.00. I better stop referring it as Gatorade; it’s more like liquid gold. Could you imagine feeding one person a day for $1,000? Her IV food is full of nutrients. It goes from a tube from the bag through the neck and stops in her heart. I imagine it has to be good, I bet it tastes awful.

Thank you for checking in and for your continued prayers.

Love,

Brian, Ann, and Ashley

Saturday, February 5, 2005 11:51 AM CST

Ann really enjoyed Ashley's guestbook entry. Thank you Ash ! We love you too!!! (million size font, bold, and underlined)

The waiting for the improvement in the pancreas continues. At 9:30am a blood sample was drawn and at 11:00am we got the results. Ann will continue on the “Diet by IV” for at least one more day.

This will extend our stay in the hospital for at 1-2 days. If everything goes perfect from here we will still have 4-5 more days in the hospital. This will be followed by 2-3 days at the local hotel. The concern is that one of the enzymes increased. This indicates that the pancreas is still inflamed.

Ann continues to breath into the apparatus called a volume spirometer. Actually she sucks in and it measures the volume of air that she’s capable of breathing. This morning she was at 90f her presurgery volume. While this is good she still has fluid in her lower lungs. The goal is to get this fluid out by expanding the lungs to their maximum volume. The way to do this in hourly use of this volume spirometer. If this fluid doesn’t get removed it could lead to pneumonia.

Her doctors became a little concerned that torodol was removed from her medication. It turns out that some doctor in the pharmacy department changed Ann’s prescription without informing her doctors. I did a little investigation on this change informed Ann’s doctors of my findings and I guess they’ll do a little investigating of their own.

This change might have been the result of a computer limiting the number of doses. Still Ann’s doctors should have been informed. The computer systems are set to limit doses to prevent legal problems for the doctors if the medication is known to cause liver or kidney problems. In this case Ann’s kidneys are working just fine.

We were able to work it all out yet is shows that the patient really requires an onsite advocate. It demonstrates that when changes are made they are communicated to the treating physician and investigated. This doesn’t sound like much but this change lead to nausea and prevented Ann from getting out of bed for the most part of 1-2 days. Getting out of bed is very important in the healing process.

Ann was able to go for a walk today and will try to take a shower later today. Taking a shower requires about 20-30 minutes of prep time. Part of the process is to take thin pieces of plastic about the size of a piece of paper and cover the wounds. The plastic sheets are held in place with an adhesive around the edges. This adhesive and sheet reminds me of a clear “Post it note”.

From what we can tell from our window the weather appears quite pleasant. Omaha has had near record highs. We’ve been inside enjoying it from our fifth floor view.

Thank you for checking in and for your kind thoughts and prayers. The doctors had said to plan on 3 weeks in the hospital. Even though they tried to get us out sooner it’s starting to appear that we’ll be here for close to the 3 weeks.

Love,

Brian, Ann, and Ashley

Friday, February 4, 2005 1:57 PM CST

LATE BREAKING NEWS – Ann remains nauseated. While you and myself feel that we are at the boring stages of recovery this boredom is just about killing her.

The minutes and hours waiting to get rid of the nausea makes the day last really long.

Ann’s pancreas remains overactive. This over activity is due to the surgery. This over activity is not pancreatitis. Dr. Loggie just wants to prevent pancreatitis from occurring. Her pancreas does show signs of improving. If you’re into numbers:

Lipase Enzyme desired range is 0-60:

Date u/L Diet
1/31 156 Liquid diet
2/1 98 Semi-solid food introduced
2/2 121 Semi-solid food
2/3 139 Back to strictly clear diet
2/4 100 Remain on clear diet

Amylase Enzyme desired range is 28-100:

Date IU/L Diet
1/31 110 Liquid diet
2/1 79 Semi-solid food introduced
2/2 109 Semi-solid food
2/3 114 Back to strictly clear diet
2/4 90 Remain on clear diet

As you can see the enzyme level is decreasing yet Lipase remains out of the desired range. This means that Ann will remain on a clear liquid diet. Ann has not had anything substantial to eat for 2 weeks now. It’s gotten to the point where watching TV is difficult because all they advertise is food. It really brings it to light when you can’t eat.

Ann was also cut off of Toradal yesterday. Since the only other pain medication she was prescribed was darvocet. She ended up taking more darvocet. This along with her elevated enzymes resulted in her becoming very nauseated. This morning the doctors put her back on the pain reducer Toradal.

If you’re scheduled for surgery remember to stay on Toradal. Dr. Loggie has no problem with his patients staying on Torodal. It was some other doctor that limited Ann’s time on it. This resulted in nausea, and a loss of a day for exercising and showers.

Overall the last 24 hours have been pretty rough. It has felt that we went backwards.

We’re hoping that by tomorrow she’ll be able to eat non-clear foods and solid foods on Sunday.

Her incision continues to heal. When she exercises her lungs she’s able to inhale about 75 to 80% of her pre-surgery air volume.

Since she hasn’t been able to walk very much she’s kept the leg squeezers on. This is supposed to reduce the chance of blood clots.

Bob made it back to St. Paul last night.

Thank you for checking in. We’re praying that Ann’s pancreas becomes less inflamed and that a solid diet is in the future.

Love,

Brian, Ann, and Ashley (at home sick, but getting better)

Thursday, February 3, 2005 3:45 PM CST

...........Afternoon Update............

If you just logged on today I posted a previous update at 9:00 am.

It looks like we’re going to be here awhile.

The lab reports came back indicating that the pancreas is continuing to act up. Rather than run the risk of sending people home to have a problem they try to resolve the problem here. It looks like we have another 3-5 days in the hospital. With another 3-5 days at a nearby hotel.

Ann’s short reprieve of the IV feeding bags and bottles is over. We expect the IV milkshake and Gatorade concoction to arrive at any time.

Ann feels weaker today than yesterday. She couldn’t shower yet she did take some time do some limited exercise. The weakness is likely do to lack of food. She will also stop receiving Toradol for pain. After so many days they get concerned that it will mess up her stomach and intestines. Her pain medication diet consists of Darvocet every 6 hours.

I spoke with Ashley a couple of times today. Jeff (Uncle Buck) had to take her to the doctor this morning. It turns out that she picked up some virus. She’s running a slight fever and her glands in her neck are swollen. I hope she didn’t pick it up from volunteering here at the hospital.

Ann asked her dad to go home today. She felt that it’d be best for him. It gets awfully tiring hanging around a hospital. The doctors know what the problem is. It just seems to be a matter of time for it to resolve itself. If we need Bob he’s only a phone call and a 6-hour drive away. For Bob, a 6-hour drive is nothing. He’s a driving machine.

If you’re reading this and still praying please pray for the following:

Ashley to get better - It’s tough to be sick when your mom isn’t around.

Bob’s safe journey home. - He’s driving my car. (He wanted me to use his minivan so Ann has a more comfortable ride home)

And of course Ann’s pancreas - If it doesn’t get better we’re not getting out of here.

For the past 5 days I’ve had the computer in Ann’s hospital room. This makes it much more easier to provide updates and read guest book entries and e-mails to Ann.

Thank you for checking in. All the kind thoughts, e-mails, cards, guestbook entries and most important your prayers are appreciated.

Love,

Brian, Ann, Ashley (at home), and Bob (driving through the cornfields of IA….hopefully keeping it on the road.

Thursday, February 3, 2005 8:53 AM CST

Last night we had great news. It was the first night that Ann didn’t have to spend hooked up to a feeding IV. Not having the fear of yanking something out of you neck in the middle of the night is really nice. Ann still has the piping sticking out of her neck. She’s just not hooked up to the IV pump.

We don’t think this will last for long because her pancreas is back to indicating that it is still inflamed. We are waiting to see Dr. Loggie. He normally does his rounds around 9:00am.

She is quite alert and is now telling me to get going and send you an update. If your checking this Thursday morning please read the update I posted yesterday around 4:30pm.

In the next day or two we should find out the pathology results from the tissue that was removed. This will indicate what exactly Ann had or didn’t have. We haven’t really dwelled on this because at this point it doesn’t really matter.

We’ve worked out the medications so she can get the maximum sleep. She is as rested as could be expected in a hospital setting. We’ve learned that you don’t go to hospital to rest.

The pain medication has helped her keep the pain under control. On a scale of one to 10 her pain hovers between a 1 and a 3.

The staff at the hospital are pleasant. We had only one nurse that didn’t really understand what needed to get done. It took a couple of hours for a student nurse to figure things out and get everything corrected. We understood that the nurse giving medication had to follow their procedures.

We learned that if it’s left up to the patient to decide when the pain medication can be given the nurses can’t give it to you any earlier than the time prescribed. If the doctors say that you are to be given the medication every 6 hours then they can give it to you an hour early. The student figured this out right away and had the prescription changed so that it allows for more flexibility. Not a big deal, not doing this slowly results in medication given later and later into the night, which results in less and less uninterrupted sleep.

Overall the care has been excellent considering the time we’ve been here and the various people that have helped us. We have no complaints.

I’ve met other Loggie patients and their families. Some of the people we’ve met have been people that we’ve exchanged e-mails and correspondences with. It is very nice to put faces with names. You could say it’s a club that no one is knocking at the door to join.

We’ll see if Ann can eat today. We don’t expect her to eat solids any time soon.

Thank you for the prayers and support.

Love,

Brian, Ann, Ashley, and Bob

Wednesday, February 2, 2005 4:31 PM CST

It’s been a pretty good day here at the Creighton Hilton.

Ann remains in recovery on a liquid diet. She was able to take a shower and stay awake most of the day. This was her first real shower for 8 days. Up to today she really didn’t care how she looked. I know many of you might be shocked at this but this shows you just how sick she’s been.

Today she exercised, walked a little, visited, and actually started to act pretty normal.

She remains on a liquid diet. Her pancreas has shown improvement yet Dr. Loggie would rather error on the safe side. She will continue to be on a liquid diet. Today she starts drinking a drink called Resource. Resource is similar to Slimfast only with more calories. They’re hoping to get her off the IV feeding tubes.

Bob and myself spoke with Dan, Dr. Loggie's assistant. Had Ann’s pancreas not acted up she would have been out of here on Monday. He mentioned that pancreas problems slow down the release date by five or more days.

Everything is going pretty good. We’ve controlled her pain and nausea and she’s been getting a good night sleep.

The temperature is close to 50 and we have a nice sunny day to look out at Omaha’s Cathedral.

We’ve heard that Ashley is doing well at home and Ann is looking forward to going home.

Thank you for checking up on Ann and for all the prayers. She is improving. She received communion and is in very good spirits.

We’re only a little nervous to see how the pancreas reacts to digesting real food.

We’ll see you tomorrow.

Love,

Brian, Ann, Ashley, and Bob

Tuesday, February 1, 2005 4:05 PM CST

.....No news is good news......

The blood work indicates that Ann Pancreas was inflamed and is now settling down. She remains being fed by IV with what appears to be a bottle of milk (protein) and a bag of Gatorade (Electrolytes).

She was able to exercise today and walked a couple of times. Her nausea is improving as a result of getting nourishment, sleep, and reduced enzymes. We’ve really concentrated on getting her pain medications at the time before they’re needed.

Dr. Loggie said that this will be the boring part of the treatment. He was right. Ann is getting tired of it and really wants to put food in her own mouth and not through her veins.

If you’re into to health measured by numbers here’s the data:
Lipase enzyme has come down to 98 (Normal is 0-60)
Amylase is normal at 79 (Range is 28-100).
Hemoglobin (red blood cells) is at 8.7 it was at 8.2 (Normal is 11.8 - 15). This improvement tells us that a blood transfusion is unlikely.
White blood count is at 4.7 (Normal is 3.4-9.9).

She’s still showing signs of anemia. To combat this she’s receiving drugs to boost her red blood cell production.

We are not predicting when she’ll be out. She will need to eat normal food for a couple of days in order to start thinking about that.

She rests quite a bit. Everything is going as expected for major surgery.

They did put her together pretty good. The wound is not inflamed and she does not have any drainage. She does not have any sign of infection. When the nurses look at her incision they say it looks normal or better than normal for this stage of recovery.

Thank you for checking up on her. Your thoughts and prayers have really made a positive impact. Thank you.

Love,

Brian, Ann, Ashley, and Grandpa Bob

Monday, January 31, 2005 2:27 PM CST

See the last paragraphs for the Monday evening update.

Ann was able to sleep from 12:00 until 6:00 am. She only got up once to use the restroom and she didn’t even wake me. She was much more rested this morning than since she arrived here.

Her diet consists of:

Pain medication
Darvocet every 6 hours (at the 12’s and 6’s)
Toradol every 6 hours (on the 3’s and the 9’s)

Nausea medication
Zofran every 6 hours (at the 12’s and 6’s)
Reglan every 6 hours (on the 3’s and the 9’s)

In addition to red jell-O she is offered green jell-O. The highlight of the day is 1-2 glasses of hot tea. I don’t think Ann will have much of an appetite for jell-O deserts after this stint.

Her pancreas continues to be a concern. Dr. Loggie stopped by this morning and mentioned every once in a while the pancreas acts up after surgery. In addition her white blood cells have been driven down by the chemotherapy. Her low red blood count continues to be something that has to be watched. They have yet to show signs of recovery.

We have heard of other having pancreatic problems after anesthesia. If you’re familiar with anesthesia and pancreas problems please e-mail me.

Another person who is a member of an Internet message board that discusses these types of cancers has asked others what their post operative experiences with the pancreas has been. So far a number of people that have gone through this have had pancreas problems. At least we know that this isn't unique to Ann.

Dr. Loggie said that the pancreas can act up for 1-2 days or it can last for a week or longer. He did say that this would likely be a very boring time for us in recovery. So far Dr. Loggie has been right I imagine he’ll be right again. Although boring at this stage is good. I’d rather not have a lot of excitement.

She has been able to get up out of bed to use the restroom and she did take one 500 foot walk. She’s scheduled to go on another walk at around 4. We do the walks about an hour after the pain and nausea medications.

In the next hour Ann will begin to receive protein and fats through the IV the goes from her jugular vein to her heart. She’s looking forward to this. She has the feeling like she’s starving. The RN already told her that this feeling would likely continue. At least she’ll know that she’s getting more than just sugar water. It’s been 9 days since she last ate something solid.

I didn’t post it yesterday but on Saturday Dr. Loggie said that Ann looked so good that she’s might be able to get out today. So much for beating “The Club” record. Yesterday was a major step backward. Ann was looking good. Dr. Loggie did say this morning that everyone is different and sometimes the body takes a few days to react and then a few days more to recover from the chemo. We’ll be in the hospital for as long as it takes. Ann could care less about how long she’s in just so she leaves healthy. We know we might be here for a while.

We have enough flowers and items in Ann’s room to make it look pretty and a room full of love. Ann appreciates all the kind words, the few room brighteners that have arrived, and prayers. Please hold off sending any additional items for her room for now. We don’t have any additional surface areas to put things on.

Thank you for checking in. Ann appreciates the prayers.

Love,

Brian, Ann, Ashley, and Bob

Ashley’s made it home safely with “Uncle Buck” (Jeff). I never saw the movie but Jeff said he said he’d treat her just like Uncle Buck would…..For some reason this makes me nervous. I imagine Ashley will have a good time. See you later.

…………..EVENING UPDATE………..

At 3:00pm the milkshake in an IV bottle and the Gatorade in a plastic bag arrived.

Ann is now receiving protein and electrolytes. It looks identical to milk in a glass bottle hung upside down and Gatorade in a plastic IV bag.

We discussed the pain medications with the staff and they are right on schedule. It seems like the pain and nausea is under control. On a scale of 1-10 she is currently at a 3.

Ann completed two lengthily walks and is quite able to make it 10-15 feet to the bathroom rolling an IV stand next to her. She remains weak yet she has shown improvement since she is getting fed. She is also able to talk for longer periods.

The hospital Catholic Priest stopped by. Ann enjoys talking with him. He’s a former instructor at the colleges run by the Jesuits. We learned that schools such as Creighton, Boston College, Xavier, Gonzaga, Georgetown, Loyola, University of San Francisco, and 22 other colleges are run by the Catholic Jesuit Brothers. I’ll need to keep these colleges in mind when it comes to NCAA basketball tournament time.

Bob stops in to check on us. He provides relief for me. Without him it would be much more difficult. It is very reassuring to have Bob with us.

We’re going to call it an early evening and try to get to bed before 12:00.

Thank you for checking up on Ann and for the prayers. We’ll know more tomorrow once we have her blood results back.

Love,

Brian, Ann, Ashley (at home), and Bob

Sunday, January 30, 2005 10:55 AM CST

See bottom for Sunday Evening update (9:50 pm)

Lu,
She has been receiving the Eucharist. Pretty much on a daily basis. Don't worry it's not messing up her diet. She's been only requesting a sliver.

After church we went up to the hospital. Ann said her good-byes to Ashley as Ashley left to return to Minnesota with my brother Jeff.

Earlier today Ann met with one of the doctors and the doctor reported that she was having problems with her pancreas. Prior to us arriving at the hospital Ann had thrown up. It appears that solid foods will not be part of her diet for sometime.

Yesterday Dr. Loggie thought she was ahead of schedule. With the inability to digest food I don’t think Ann will be getting out very soon.

Ann requested that anyone that reads this might say a little prayer for her. She truly believes in the power of prayer. So much that she asked that I leave her and send this message to you.

We wish we could thank the individuals who have given so much of their support over the past 10 days. As you may have noticed I don’t mention very many names in this daily update. I’m always afraid that I’ll mention one person and not another.

If you don’t see you name mentioned it’s not because were not grateful for you it’s because we’re grateful for all of you both seen and unseen. Ann knows there are many people reading this and praying every day. And for that we are most thankful.

She’d really appreciate a little prayer for that pancreas of hers…

Thank you.

Love,

Brian, Ann, Ashley, and Bob
Evening update……………

Ann had a very difficult day. She spent most of the day in bed with a few trips to the restroom. She was first diagnosed this morning with a problem with her pancreas. This may have lead to her vomiting we don’t know. It could also be how her body responded to the chemotherapy. Around noon she was given a pain medication that caused her to be extremely weak.

She continues to experience low hemoglobin counts. If you recall about 2-3 days ago she was on the borderline of requiring a blood transfusion. She continues to be on the borderline, as her counts have not improved. Sometimes they actually show a decrease.

If you’re familiar with hemoglobin her count is 8.2-8.4. Her count should be up around 12. This continues to be a concern.

We are tracking her medications on a whiteboard in her room to try to track what she feels is causing her problems. We’re being faced with a multiple of variables. Starting with how her body responds to major trauma, to chemotherapy, to pain medication, not eating any protein for the past 7 days, and what she feels is the major problem is sleep deprivation. She has yet to have more than 1 hour of uninterrupted sleep. We’re addressing this tonight so that she will be able to sleep uninterrupted from midnight to 6:00am. She’s looking forward to this.

I’ll be spending the night.

Thank you once again for your thoughts and prayers.

Brian

Saturday, January 29, 2005 1:13 PM CST

Just wanted to give you a middle of the day update……

Wow ! Once the intestines start to operate normally everything gets better very quickly. Ann’s pains were flushed down the toilet.

She is a diet of tea, green and on special occasions red Jell-O, juice, and broth. She has been out of bed since 7:00am. She cleaned up a little in the tub although she has to be careful not to get the surgical areas wet. H

She just had her catheter removed and is very capable of being able to get up out of bed to use the restroom. She has only one bag of lactated ringers (sugar water with some nutrients) being infused into her. Other than the one bag she is tube free!

Dr. Loggie stopped by this morning and said he was very pleased with her progress. Two days ago she was a little behind where he would have like to have seen her. It appears that in one day her recovery is ahead of where he thought she’d be.

We’re not yet predicting when she’ll be released. Once she is Bob will likely go home and we’ll stay in Omaha for 3-5 days at the local hotel.

Ann appears to be quite able to walk whenever she needs to. At the moment she’s relaxing in a chair.

Ashley, Bob, and myself are going to run out and get a little lunch.

Thank you for the prayers. She’s getting better.

Love,

Brian, Ann, Ashley, and Bob

Saturday, January 29, 2005 0:04 AM CST

……………….Late night update………….

It was a successful day considering that Ann could hardly walk 2-3 steps yesterday she is now walking about 600 feet at a time.

Ashley and myself got out of the hospital today at about 5:00. During the time we were out Ann went on 3-4 walks with her dad. When I got back she went for a walk with me. All told she went on 5-6 walks today with each one of them getting longer.

She remains in A LOT of pain. The morphine was messing her up yet the other drugs also seem to have bad reactions such as tiredness. Even though the drugs make her tired she still can’t sleep due to the pain.

The pain is being caused by her intestines starting to come alive. It’s very hard to see the severe cramps that she’s having. As I mentioned previously Dr. Loggie prescribes walks and more walks to keep her bowels moving.

On Saturday were hoping that she can have orange juice. Yahoo! The problem is that as she digests food she’ll start cramping up again. Her intestines have become very sensitive due to the handling during surgery and lack of movement. She has to go through a lot of pain to get better. It’s difficult to watch and must be much more difficult to go through.

Her room is pretty nice. She has a window that overlooks the parking lot. She doesn’t really spend any time looking at the view. The bathroom is large. She hasn’t been in the bathroom yet.

She did get assigned an older bed; we took care of that in about 5 hours. We had to wait until all the people that were coming up to the fifth floor were “checked in”. So after the first shift went home the nurse found us the best available bed on the floor. She now has the most comfortable and newest bed on the floor. The nurse showed me one that was available and I rolled it in to Ann’s room. Ann and myself exchanged it ourselves. Not that the hospital staff couldn’t do it but we just wanted to get it done as fast as possible.

The staff was shocked that we did it ourselves yet they didn’t tell us we shouldn’t have. I didn’t want to take the chance that one person said we could have the bed and someone else would come by and say that we couldn’t exchange beds between rooms.

The entire staff at the hospital has been excellent. They are very helpful even pointing out the quietest room on the floor. We asked for it and they assigned it to us. Very, very nice people.

Ann really is not up to seeing visitors. She was able to brush her teeth today for the first time in 5 days.

My brother Jeff will be coming down on Saturday to drive Ashley back to MN on Sunday. Most of you know that he’ll be living at our house until Ann and myself return.

They took out one more IV so she’s down to the feeding tube that goes from a vein in her neck directly to into her heart. She still has a catheter.

Tomorrow brings orange juice for breakfast, lunch and hopefully dinner.

Thank you for staying interested in Ann and for your prayers. Her recovery is far from over.

We’ll see you when we can.

Brian, Ann, Ashley, and Bob

Friday, January 28, 2005 4:06 PM CST

Ann is out of intensive care. She is now on the recovery floor. This is floor 5 of Creighton Medical Center. So far she's held off on needing the blood tranfusion.

She is able to walk with a walker. At 3:00 she put in about 300+ feet. She is in the mood to get out of bed. This is a first sign of getting better.

She has turned the corner. Now she's looking forward to being able to eat. Not eating for 5+ days is getting a little old.

Her intestines are starting to rumble. When they do they do cause her great pain. On a scale of 1-10 she gets hit with bursts of 10+ pain. Luckily they only last a moment but she does wince up when they come.

I need to run back to the hospital. I wanted to give you an early update of the days events.

Thanks again for visiting the site. Your prayers have been wonderful. Like I said before Dr. Loggie said they really worked.

Love,

Brian, Ann, Ashley, and Bob

Thursday, January 27, 2005 7:30 PM CST

Last paragraph was added at 11:15pm

Once again I only have time to provide a quick update. Ann was able to sit in a chair for about 2 hours today. She is also able to walk about 3-4 steps.

She’s been experiencing a low red blood count that has lead to weakness. The weakness is due to the inability of her blood to carry oxygen. This is the result of the chemotherapy and surgery. She’s very close to receiving a blood transfusion.

Dr. Loggie is taking the wait and see approach. Rather than risk complications from a blood transfusion he’ll see if she improves. She appeared to hit the bottom today and has shown recent (slight) improvement.

Her blood sugar has stabilized so we know that her pancreas appears to functioning. She was getting her blood tested every 4 hours. The past 24 hours has shown her insulin to stabilize so she’s back to having her blood sugar tested once every 12 hours.

Yesterday I mentioned that she was off oxygen. Due to her low red blood cells she’s back on it.

So it’s roller coaster. The main concern is to keep pneumonia from occurring; the best way to do this is to get her up and around. We’ve just started to do this.

Dr. Loggie and his staff have doing a very good job. Dr. Loggie stops by twice a day with an entourage of other doctors.

Gotto go back before the hospital locks out visitors.

Thank you for the prayers and kind words. I haven’t had the time to check my e-mail so if you left a message I apologize for not getting back to you.

.........11:15 pm Late night update.........

Ann remains in Intensive Care. She is REALLY working on getting better. She is trying her hardest to sit in a chair, stand up, take a few steps, and work her lungs. This recovery is tough. No wonder why it takes weeks. There have been no changes in her vitals. Mentally she is showing to be very determined to get up and out of bed. Thanks again for being here.

Love,

Brian, Ann, Ashley, and Bob

Thursday, January 27, 2005 0:07 AM CST

We had quite a surprise late Wednesday afternoon. Dr. Loggie decided to remove the stomach draining tube from Ann. This is a great relief to her nose and throat. I’m a little concerned that she might get an upset stomach if her intestines don’t start to be function yet I have to trust this decision.

I heard that Dr. Loggie is hoping to kick start Ann’s digestive track by starting to give her water and ice. Her stomach and intestines had little if any disease so he didn’t need to do anything that would cause a great deal of inflammation to these organs. The stomach doesn’t like to be handled so this was VERY good news.

She also had another IV removed. She’s down to one IV on her right hand and one main IV tube that goes from her neck directly to her heart. She continues to wear the leg massagers and numerous wires.

Ann is talking pretty good. The goal for her tomorrow will be to get out of bed and into a chair. Tomorrow will be the first day that she will feel the pain from the surgery. So far she’s said that she’s at a 1 on a scale of 1 to 10 with 10 being the worst.

As of this evening nausea was giving her the biggest problem. They seem to be able to control it 50% of the time. Then she has to wait for her next medication. Once she starts moving around this should diminish.

I just got home from the hospital. Some of you have called yet I’m not able to return calls from the intensive care unit. I’ll be back there at 6:00am.

Once again Ann truly appreciates the prayers and kind words. I do share your comments with her.

Love,

Brian, Ann, Ashley, and Bob

Ashley’s been putting in a few hours at the gift store. She was only able to see Ann a couple of times today. She had some sniffles so we thought it be best to keep her away until we see if it is a cold or allergies. We’ve had a couple days in the 60’s down here and perhaps some allergens got into the air after the snow melted.

Wednesday, January 26, 2005 4:06 PM CST

I’m at the hotel for only a minute so this will be quick.

Ann is still in intensive care. She is no longer on oxygen so she doesn’t have that tube around her ears and under her nose. They also removed one IV line that was being used for blood pressure monitoring. She is moving her arms. She is also able to sit up with some help.

Her major concern has been lack of sleep. It seems they get her up every hour to do something. She is able talk pretty good.

She has a tube that draining her stomach. She’ll have this until her intestines start working. This should take 3-5 days.

Thank you very much for your prayers and comments. Time doesn’t allow me to respond individually to you. She does like to hear the words of encouragement you’ve provided.

Thank you for your prayers.

Brian, Ann, Ashley, and Bob

Tuesday, January 25, 2005 10:17 PM CST

Last night I spent the night with Ann. She seemed to have slept pretty well. At 5:30am Bob and Ashley came to the door within minutes the assistant with a wheel chair showed up and Ann was on her way. I was able to meet with Dr. Loggie briefly and I was able to give him a rosary that Ann asked me to give him prior to surgery.

After some prep work and some teary eyes we kissed her and let her go. She started the surgery at 7:35am.

The staff provided updates throughout the day. All they could really say was things were going well.

Ashley went to work at the Hospital Gift shop and Bob and myself waited, prayed, and waited some more. At around 2:00 pm Dr. Loggie walked out and said that the rosary and the prayers worked. At 5:30 Ann was moved to the recovery room.

The disease that Ann had was very limited. Normally he would have expected a far greater amount of disease. Her major organs were disease free! He said that he did not burn any bridges….meaning that if it should reoccur in the future he would continue to have all available options.

In other words he didn’t remove any life change or altering organs. Everything planned to be removed was removed

Most important was that he was able to remove ALL the disease or evidence of disease. The disease came out VERY easily. He said that it is usually more encrusted and imbedded in the organs. In Ann's case he said it came off the surfaces very easily.

Specimens that were removed will be sent out for pathology testing to verified what she had. They will also be tested to see what drugs could be used if it should come back.

Now the vitals…

Ann’s blood pressure is normal, heart rate normal, oxygen 98she was able to push out 50f her lung capacity into the spirometer. This is very good for being out of surgery for 3 hours. She is awake, has her eyes open, and is able to squeeze my hand, wiggle her toes, and talk VERY hoarsely. She asked me to go home, provide an update for you, go to sleep, and to get a room for Bob if his snoring keeps us awake.

Update at 6:30am - Bob did not snore.

Thank you, Thank you for your prayers.

Love you all,

Brian, Ann, and Ashley (and of course Grandpa Bob)

Tuesday, January 25, 2005 10:08 PM CST

Our prayers have been answered. The first words that Dr. Loggie said to me after surgery was “the prayers and the rosary worked”.

The surgery lasted 10 hours. Ann is in intensive care and is doing remarkably well.

I’ll post a little bit more in a few minutes.

Monday, January 24, 2005 5:01 PM CST

Everything continues to go well. Ann didn’t sleep the greatest yet she’s not at all nervous. She even showed her hands to Dr. Loggie and we all laughed when her hands were less shaky than those of a surgeon. She felt her lack of sleep had to do more with a strange bed than anything. She said she’d make up for it tomorrow.

This morning over breakfast we met two other families that had their surgery with Dr. Loggie last week. It was encouraging to hear that they were in the process of recovery.

We checked in with Dr. Loggie at 11:00am. Dr. Loggie and Dan spent about a half talking us through the procedure. The next stop was the general administration check-in office. While Ann was checking in Ashley and myself went down to the Volunteer Office.

Ashley will pick-up her official Creighton University Hospital Picture ID tomorrow. She is being taught the Creighton customer service attitude. We both learned that Creighton takes customer service very seriously. As the lady we met in the hotel lobby said, “The people are so nice you’ll want to take them home with you”. She has a daughter the same age as Ann that had her surgery a week ago.

Ashley and myself learned during orientation that Creighton expects the best customer care from their employees. Being pleasant and having a caring attitude is part of everyone’s job description, no matter if it’s to an outsider or to one another.

Ann is resting comfortably in her room. She took one pill to help her relax and a couple of antibiotics. At about 5:00pm she will drink the gallon of “Easy Go”. After surgery she’ll be in intensive care until she can start moving and breathing into the spirometer (I think that’s what they called it) She will need to do this on an hourly basis to lower the chance of pneumonia.

Bob decided against the RV and will instead bring his minivan down. We’re looking forward to Bob snoring us to sleep this evening. When he gets down here Ashley and myself will go out to eat with him and let the “Easy Go” take its course with Ann.

At 5:30 am on Tuesday Ann will get prepped for surgery. Dr. Loggie thought that she’d have at least 10 hours in the operating room.

We continue to pray that everything goes well.

Thank you very much for all your love and prayers.

Love,

Brian, Ann, and Ashley

Sunday, January 23, 2005 7:50 PM CST

After a 6-hour drive from Minneapolis we made it to Omaha. We checked into The Park Inn located in downtown Omaha. We’re all settled in. Ashley has been spending time on the cell phone using up free weekend minutes and Ann is relaxing reading and watching TV.

The Park Inn seems to be the place where patients and their families stay. We’re about 300 yards from the entrance to the Hospital. The rooms are clean and for $50 / night we can’t complain. They even have free high speed Internet.

The drive was wonderfully uneventful. Although it was interesting that we saw three cars drive into the ditch for no apparent reason. The roads were dry yet is was a bit windy. The weather is in the low 30’s and tomorrow it’s forecasted to be in the 50’s

We’re planning to put Ashley to work as a volunteer at 9:00 am. Monday morning. We’ll check Ann in at 12:00 noon.

The care packages that Ann received have been wonderful. Thank you all for the books, magazines, candy, chips, shampoo, you name it, even the Sunday paper. The car didn’t have room for anymore.

Ann’s dad is coming down tomorrow with his RV. If Ann needs to lie down on the way home she’ll have a comfortable bed.

The prayers have been working. Ann is not nervous at all. She says she knows she should be but she’s says she’s shocked that she not experiencing any anxiety. She’s been sleeping normally.

Tomorrow we’ll meet with Dr. Loggie and Ann will be spending the first night in the hospital.

Ann would like to extend her thanks for all your supportive prayers.

Friday, January 21, 2005 6:07 PM CST

Amazing…….

Words cannot describe the feeling that we have as the result of people showing their care. Ann is just amazed at the response both on this website and the people that have contacted Brenda.

Brenda mentioned this morning that 71 people have contacted her. Ann knows that that there are many other people who are also praying for her.

We are truly blessed with the support we have received our friends, coworkers, children of coworkers, relatives, neighbors and others that have been affected by this disease.

Ann went to see a friend that is involved in spiritual healing today. She has been finding great comfort in this.

We are planning on leaving Sunday morning for the six hour trip to Omaha. We’re happy to see that the snow that’s affecting the Midwest today should be gone by tomorrow, Saturday.

I entered a link to a website that explains this disease in an understandable manner. This a good article if you are curious about what this disease is all about.

We are truly blessed with the love and caring that we have received. Thank you.

Wednesday, January 19, 2005 7:57 PM CST

Ann received the films from the CT scan. The only way we’ll know if the disease has changed will be to have them read by Dr. Loggie. The most recent one was 10X more detailed than the first scan so it’s difficult for a person without knowledge to compare the 2 scans.

When we’ve had other doctors look at the previous scan they did not see the detail of the disease the Dr. Loggie saw. We feel that it’d be best to have him perform the second review.

The blood tests will also take a couple more days to get the results.

It’s looking like the weather will allow us to leave Sunday morning for Omaha.

Today Ann went to see Father Livingston at North Memorial Hospital in Minneapolis. Father Livingston has been assigned by the Catholic Church to work exclusively with the sick.

Ann first heard of Father Livingston from a close friend of hers and then a week later her aunt mentioned his name. When two different people from different areas of the metro area mention that Ann should go see Father Livingston she felt she should go see him.

Ann found Father Livingston to be a very caring person. She is very comfortable talking with him. Today she received the anointing of the sick.

Ann continues to feel very good. She has taken a couple of days off her exercise routine. Part of the reason is that she wants to give her body a few days to recover prior to surgery.

About a day or two ago she stopped taking Celebrex and high doses of herbs. She feels that she doesn’t want to take any risk with any cross reactions with any drugs that she might receive during her time in the hospital.

We continue to feel the support from you. Your prayers are working. Thank you very much.

Monday, January 17, 2005 10:08 PM CST

This afternoon we were able to get Ann scheduled for a CT scan and 3 blood tests. We are trying to establish a baseline on blood tumor makers before and after surgery.
Both are scheduled for Tuesday.

It’ll be interesting to see how her disease has changed over the past 3 months.

If it wasn’t for Ann asking for the tests they wouldn’t have been done prior to surgery. We’ve learned that we must be responsible for our own health care.

Thank you for visiting the site. I will try to give an update at least every other day as we approach surgery.

I’ll keep the site posted as soon as we find out how the CT scans look like. All your prayers are appreciated.

Saturday, January 15, 2005 11:45 AM CST

Ann is doing wonderful. She has seen many of her friends the past two week-ends at two different social gatherings. It has been amazing to see the support from the family, friends and friends of friends have given her. Thank you.

Ann and I appreciate all the support. The number of prayer lists that people have said she is on is amazing.

We are still planning on leaving for Omaha next week-end for surgery on Tuesday the 25th.

This past week we’ve been in contact with Creighton University to obtain a pre-surgery CT scan. Ann will also receive 3 blood tests that would indicate any changes of the disease over the previous 3 months. We’re hoping to have the scans performed this Tuesday by the Humphrey Cancer Institute.

Thank you for all the prayers. Please contact Brenda Sweet if you would like to sign-up for the prayer chain to pray for Ann during her surgery. If you have already signed up thank you very much.

Saturday, January 8, 2005 1:41 PM CST

Ann would like to thank all of you that have visited the web site and prayed for her. The postings we’ve read have been wonderful.

We will be leaving for Omaha in 2 weeks from today. Ann continues to exercise, take herbs, and Celebrex, Her primary focus has been healing through prayer.

The support she has received from you has been outstanding. Thank you very much.

For those of you that haven't read the site in the past 3 days the surgery date was pushed out to January 25.

Wednesday, January 5, 2005 8:04 PM CST

--------- SURGERY DATE CHANGE ----------

Thank you for all your thoughts and prayers.

Dan, Dr. Loggie’s assistant just e-mailed and told us that Dr. Loggie has a person who requires emergency surgery. Our schedule for going to Omaha has just been put out one week.

We have no complaints as it shows what lengths Dr. Loggie will go to help someone out that truly requires drastic action. This is exactly the kind of doctor we like.

Our thoughts and prayers go out to the person and their family. Waiting an extra week for another person with PMP makes us feel grateful for finding a Dr. that is willing to take on the tough cases.

The surgery is now scheduled for Tuesday, January 25. If you have replied to Brenda Sweet with a prayer time please let her know if the time is still acceptable.

Ann would like to share a healing message with you that she experienced this morning.

This morning she felt a lump in the location where the CT scan and Dr. Loggie indicated that a mass was located. Previously she had never tried to find this lump located near her belly button. She was surprised to find a lump the size of a plum. She became concerned so she went to see a friend of hers that heals by prayer. After prayer the lump had disappeared. She’s back to feeling free of disease. Thank The Lord.

Thank you for the prayers, they’re working.

Tuesday, January 4, 2005 9:37 PM CST

Thank you everyone for visiting the site.

Ann is doing wonderful. She's working out Monday through Friday for 1-1/2 hours. She's actually works out hard enough to sweat.

I haven't seen it myself so it difficult for me to believe. If you read this and are a member of the health club please take a photo and I'll post it on the site. She might hate us for it but it'll be worth it :-)

Please remember to get a hold of Brenda to get on the prayer chain. It's in 5-minute increments so you don't need to worry about figuring out how to pray for a 1/2 hr.

Please read the December Posting History for details on what lead us to Omaha.

I'll provide another update (perhaps with photo) in a couple of days.

December, 2004

This journal entry is to provide some background on Ann’s condition and what has brought us to seek medical help in Omaha, Nebraska.

In March of 2004 Ann began to work out in an effort to lose a few of those “Over 40 pounds”. During the month of March and April she would call me at the office and report the loss of 1-2 pounds as her daily walking and lifting weights started to take effect. I’m proud to say that her daily five-mile walk and weight training allowed her to lose 17 pounds. She has become very fit.

In May she went to the doctor complaining of a small lump in her pelvic area. Fortunately this was diagnosed as a very small hernia that didn’t need to be repaired but should be done at some point in the future. Ann scheduled the hernia repair for October of 2004.

In Oct of 2004 Ann had the hernia repaired. During the hernia repair the general surgeon noticed a very small growth inside the hernia. This growth was frozen and sent to the pathology department at Unity Hospital and to the Mayo Clinic.

Both Unity Hospital and the Mayo clinic determined that the mass was adenomucinosis. Never heard of ADEN O MUCIN O SIS? Either had we, turns out that this is a very rare type of disease that spreads within the peritoneal cavity (the area where all your insides are). CT scans later verified that the disease had spread.

This disease affects approximately 1 in 300,000-500,000 individuals.

Some people think the onset of the hernia might be related to the disease others feel that a cell made it's way into the hernia after the hernia occurred.

In November we went to the Mayo Clinic, The University of MN, Hubert Humphrey Cancer Institute, Creighton University Hospital, talked to the National Cancer Institute, University of Wisconsin,Madison, MD Anderson, Memorial Sloan Kettering, St. Paul Oncology, Tampa Bay General Hospital Oncology Department, Sugarbaker Oncology in Washington DC and exchanged e-mails with others who had this disease.

If it wasn’t for friends, total strangers who answered our e-mails, coworkers who put us in contact with leading specialists, and family we would have had a much more difficult time getting through this period. Thank you all for your wonderful support!

When we were at the Mayo Clinic they referenced Dr. Loggie’s studies at Creighton University in Omaha. We had also heard about Dr. Loggie from other people that have this disease and from oncologist friends of friends.

When the oncologist at the Mayo found out that we had talked to Dr. Loggies' office he began to ask us questions on how Dr. Loggie would treat Ann. At the time we hadn’t met Dr. Loggie, we had only scheduled an appointment so we didn’t know his treatment methods. This type of interest by The Mayo Clinic about a doctor in Omaha definitely perked our interest.

After meeting with the local physicians we contacted 2 of the 5 leading specialists in the country. During the week of Thanksgiving we met with Dr. Loggie at Creighton University in Omaha.

After meeting with Dr. Loggie we decided that we would put our trust in him. One of the factors is that he has had a very low mortality rate during surgery. The Univ of MN and Mayo both said that they expect a 6-10 percent mortality rate during the procedure. Although they thought the risk to Ann "could be" lower due to her physical shape it was still quite high.

We feel very comfortable in going to a hospital that was founded on Christian beliefs. Dr. Loggie is an expert at this disease as he has taken a very common sense approach to treating it. For instance, he was one of the first doctors to use anti-inflammatory drugs to fight this disease. He noted during surgery that the tissues surrounding the disease are inflamed.

Dr. Loggie immediately put Ann on anti-inflammatory medication. Just recently Celebrex being used in cancer trials has been in the news. It was through these studies that the risk to heart patients has come up.

We scheduled a surgery date for January 18th.

During the month of December Ann has met individuals that specialize in healing by prayer. She has listened to CD’s and read about healing with prayer. At the moment she is doing very well.

We have been told that the surgery is VERY lengthy taking up to 16 hours. Typically it takes around 10-12 hours. Dr. Loggie told Ann that it would take as long as it would be required to take out as much disease as possible.

Because it is such a difficult surgery Ann will be in the hospital for 10-30 days. It is very important that she remain fit to help her in her recovery. Ann is still exercising on a daily basis. She does not have any symptoms of the disease and is in very good condition.

If it wasn’t for the hernia surgery that lead to the pathology reports, CT scans, and interviews by doctors Ann would not have a clue that anything is wrong.

We plan on going to Omaha with Ashley on Saturday January 14 to get Ann settled in. When Ashley’s not taking care of mom (mostly sitting in a waiting room) she will be volunteering at the hospital. If she needs to come home she’ll stay with my brother Jeff at our house.

I’ll keep this site up to date as we approach the surgery.

Thank you for all your prayers.

Brian, Ann, and Ashley

Saturday, December 4, 2004 12:54 AM CST

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