Loving Each Other – One Day At A Time

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    Hi Mandabun (sorry if I got that wrong…)

    My mother-in-law Clara is in late stage bile duct cancer. They could not insert a stent either as the tumor has made the duct opening too small. I don’t understand how the Mayo Clinic could say nothing could be done for your husband when the stent failed. I know they have a reputation of being a first-rate cancer hospital.

    Clara does not have the option of Mayo so we are using our local hospitals. They did some outpatient procedure where they popped a hole in the duct or something like that…not sure and inserted exterior drainage pipes which drain into bags on either side. After ten days of that, they re-routed the duct so that the bile flows into her stomach which I guess is normal and she doesn’t need the bags anymore. She had one chemo session but got anemic and low sodium, resulting in hospitalization for a week. Once they brought her levels normal, she was released and is doing pretty well. Of course that is after 2 units of blood transfusion as well.

    Now the cancer doctor is assuring us he will give her an injection to build her red blood cells prior to next chemo. He was supposed to do it the first time but we don’t think he did.

    I know this is not the alternative treatment forum but check into Essiac Tea and Goji Juice. Neither one interferes with traditional treatments but we have seen an improvement in Clara’s health and she has been taking them for 4 weeks minus the week in hospital. She was on 60 mgs oxcycontin every 12 hours and Dilaudid every two…double dose to control pain. Now she no longer needs Dilaudid and her Oxycontin has been reduced to 30 mgs. twice a day. Her pain is totally controlled. Worst problem right now is fluid retention so I have ordered mustard oil and am going to have her family massage her calves with it in addition to taking unfilterered Apple Cider Vinegar with honey and water to remove fluid. Health food Stores carry “Apple Cider Vinegar with the Mother” and it’s not expensive. “The Mother” is the actual sediment from the applis used to make the vinegar and it is much more powerful than the refined stuff you get at the grocery store.

    Of course, the doctor says her numbers are better and she is needing less pain medication because the bile duct procedure they did is working. maybe so, but we figure anything else we do is a bonus.

    There are two sites you can go to to order the Essiac Tea. One is Discountessiac. com and the other is affordableEssiac.com. there may be a hypen in both URL’s. Both seem to be reasonably priced. Goji Juice is trickier. I found one site that sells the same product for $52.00 per 32 oz. bottle while I pay 18.75 per bottle. What a joke!

    Anyhow, I spend a lot of time on the internet because I have access to so many possibilities. Another one is Resveratrol. Just google it. My husband has type 2 diabetes and he has reduced his meds since taking it every day. I’m a firm believer in complimentary therapies for serious illnesses.

    Best of luck to you and everone here.



    Thank you for ressurecting this thread. My story is so similar to Patty’s except that I am just at the beginning and haven’t gotten to the surgery yet, which is scheduled for this coming Wednesday. The stories about people being opened up and declared unresectable are difficult to hear but if that happens to me at least it won’t be a complete surprise.
    It is encouraging to hear how well Patty is doing despite being unresectable, it gives me hope either way.


    Hi Ted. I just read your posts. They were very moving. I hope you and your wife are doing the best you can under these circumstances. My husband is battling cholangiocarcinoma. We need to lower his bilirubin. We just returned from Mayo. Doctors there tried inserting a stent but could not do it. They told us that there was nothing more they could do. I have heard of other procedures called a biliary bypass, which sounds like maybe what your wife had. Could you please tell me about your experiences with this procedure and the name of the doctor who performed it? Thank you for sharing, Ted.


    Hi All, this is an email that was sent to all of our friends and family as an up date on Patty’s CC. It is meant for our family here on the CC website as well.

    Hello to all you dear folk,
    Patty and I feel that it is time to check in with you all to let you know how things are going. July marks the beginning of Patty’s sixth month since diagnosis of Cholangiocarcinoma. Our days have been filled with joy and love for each other and gratefullness for each day that the Lord gives us. At the moment, while I am writing this, Patty is playing the organ and I am just sitting here thinking how wonderful it is to have her in my life. She brings so much sunshine and emotion to each day that we have together. She is alway so cheerful and happy. Her outlook on the future is full of hope and trusting in the Lord to know that He has her life in His hands. I gain so much strength from her firm belief that, no matter what happens in her life, it is in the Lord’s hands. He knows the end from the beginning and He gives us the strength to face each day with happiness.
    Last week Patty had fever for several days and of course, this made us wonder what would be next. The fever went away and now she really feels good again!! Together, we face the future with renewed hope and strength, knowing that all of you are praying for us. We look forward to going to church this coming Sabbath, if all goes well and Patty feels like going.
    We have added several new additions to our email list so for their benefit, I will include the link to our story that is on the cholangio website. We gain so much insight from being part of the “family” on that website. Everyone on the site either has cholangio or has a family that has it. It is a very rare cancer and most everyone has not even heard of cholangiocarcinoma. These dear folk come from all parts of the world to write in about their treatments and fears and sorrows and struggles with this awful desease. So please read this site if you have a desire to learn more about cholangiocarcinoma.
    Again, thank you all for your support and love and prayers.
    Love and God Bless,
    Ted and Patty


    Hi Ted,

    They were not able to remove the tumor as there were lymphnodes involement.

    Yes, CAAT is expensive. But I just had to get myself on a really strict budget as I am the only child but I am married with 2 small children. My father always encourage me (us) not to live off 2 incomes. And he told him, what you make today, you may not make tomorrow. So my husband and I took to heart his words after being married for 20 years this year, and we were able to get it for him.

    At the time he started, drs were not willing or going to do chemo as they said its no use. However, after seeing him doing better just for follow up visits, they wanted to do chemo. So I had him try CAAT before chemo because I was not going to just give up because the dr’s did not want to do anything.



    Charlene, was your dad’s tumor resectable? And did he have any chemo or radiation? We read the info on the CAAT website. It is very interesting. It sure is expensive though.


    Hello Carrie,
    The Amino Acid cost $900 for a month supply. The supplements average cost was about $250 per month. It was costly for me as I am an only child, but I had to do it and pay for my father’s Cobra insurance. I was ‘able’ to purchase the amino acid for about 7 months but he still takethe supplements.

    I am an only child of both parents and I am doing ALL I can.

    He is doing ok now, but if we have to start it again, I will do so. After reading other post, I think he has helped him tremendously as he could barely walk in the hospital and when I started bringing him the amino acid and proper food to eat while in the hospital, he was able to come home and gain strength.

    He has really came far and he listen to everything I suggest and take everything I suggest as if I am a ‘doctor’.

    Whenever I bring something for him to take, he just ask, what is this suppose to do and I explain what I have researched and he will take it.

    My Dad, is the most wonderful person anyone can have for a father! All I can say is as of now, so far good.


    Celoi, how much does that CAAT treatment cost? It looks like it has to be purchased from that link you provided. Is this something they have created or is it a mix of natural supplements which anyone can buy anywher? I’m asking also because i’m in Canada and not sure their product would pass the border.

    Any information would be appreciated.


    Dear Charlene,
    Thanks so much for the information on CAAT. We had not heard of it before and will study into it more. The fact that your father is surviving this awful cancer, since 2005 speaks for the treatment that he has had. We hope and pray that he continues the success that he has had. Thanks again for the website.
    Ted and Patty


    Hello Ted and Patty,

    I hope you are doing well.

    My father was on CAAT. It stand for Controlled Amino Acid Theray. It is an amino acid and carbohydrate deprivation protocol using scientifically formulated amino acids. The objective of the CAAT protocol is to strategically and scientifically use the chemical reactions and interactions of amino acids, foods and nutritional supplements to alter or impair the development of cancer cells by interfering with the five basic requirements of cell formation (structure, energy, blood vessels, growth hormones and functions).

    You can find more detailed information at http://www.apjohncancerinstitute.org
    Now my father is just taking the supplements. He was on the CAAT formula for about 7 months. You can call and ask for Angelo also.

    If you have any more questions, please do not hesitate to ask me.



    Thanks for your concern. If you have time, Patty and I would be interested in knowing what alternative treatments have been working for your Father.
    Patty is on IP6 and fresh carrot juice and Par de’ Arco and Chapperell and red clover. Thanks



    Thank you so much for sharing. I hope Patty’s health continue to improve. Alternative treatment has been working for my father since Dec 05.


    My loving, beautiful wife, Patty, was diagonsed with unresectable Cholangiocarcinoma on Feb 1, 2007. We want to tell you our story as we have told it in the many Emails to our friends and relatives.
    Our home is in Punta Gorda Florida. I am a Lab Technologist in a local hospital here. Thanksgiving day, 2006, Patty noticed an unusual feeling in the area of her liver after eating Thanksgiving dinner. The symptons persisted through Christmas. In early January, we began to notice a yellowing of her skin and the whites of her eyes. On January 21, 2007, I drew blood on Patty and took it to the lab. The tests showed what we feared. Her Bilirubin was greatly elevated (12.5) and her liver tests were abnormal also. After seeing our primary physician and being referred to a digestive disorder physician in our area, Patty was referred to Dr. Alexander Rosemurgy at Tampa General hospital in Tampa Florida. Tampa General also has a center for Cholandiocarcinoma. Dr. Rosemurgy has a wonderful reputation for having performed many CC surgeries over the years.
    We had an appointment with him and after a MRI and CtScan and more lab test, Dr Rosemurgy gave us the devastating diagnosis of Cholangiocarconoma in the common bile ducts.

    The story that follows is a culmination of Emails sent to family and friends.

    Feb. 9, 2007
    Patty is still in Tampa General Hospital. This is her second admission to Tampa General in a week. The billiary drains had to be replace because they stopped flowing. She had that surgery done Wednesday. She felt better yesterday but today (Friday) she is having pain again and a blood and bile Pseudomonas infection. She is on heavy antibiotics but thankfully, she has no fever. Doc and Jeanie and Floyd and Betty visited yesterday and it was the bright spot in our day. There still is no date set for the big surgery. We expected to go home today but the doctors told us that she would need to stay at least two days longer to get this infection cleared up. I am still sleeping in a recliner beside her bed. They can’t get rid of me. This recliner and I have become good friends along with about three pillows and a blanket. I slso eat everything on Patty’s tray that she doesn’t want. I must add here that there is a wonderful food court in the hospital with plenty of good food.
    . It is a great comfort knowing that you are all praying for Patty and for me. Patty and I love the Lord and trust his wisdom and eccept what each day holds. She needs your prayers as never before. Thank you all for your love and support.

    Feb 10, 2007

    Patty has felt really good and exuberant all day and has only spent about an hour in bed today. We have taken several walks up the hall and back. Her biliary tubes were capped off today and so far she has been having a minimum of pain since they were shut off. She has been started on Procrit to build her up for the upcoming surgery. We have our laptop here in the room with us and have a good wireless connection and we check our email at least hourly throughout the day. We love to hear from you. There have been many lovely verses of scripture and poems and songs that you have sent to give us hope and inspire us.

    Feb 12, 2007

    Patty and I have been sitting on the sofa a lot today listening to songs that bring us closer together. One special is “The Rose”. I recorded it from our Roland organ at home. Andrea Williams sang it at our wedding. It is “our song”. When things are going well and you are on a roll, The little things seem to pass you by. We don’t realize how precious our loved ones really are. One day all is well and tne next day your world is turned upside down and all the details of everyday life just don’t mean anything any more. With the unknown facing us, Patty and I have renewed our love for each other and our love for our Lord and Saviour.. Patty is just an amazing person. In the face of this adversity, She never gets discouraged, she never complains. She knows that the Lord is in control and she trusts Him completely. She is at peace. Patty’s eyes really brighten when I read your emails from her loviing family and friends. Your prayers mean a lot to us. Looks like we will be here at least through tomorrow and maybe the next day. The docs are preparing her for Home health. She will need IV antibiotics and a line needs to be put in her arm for that . It looks like the big surgery is still a couple of weeks away. We don’t have any idea of a date yet. We will let you all know when we find out. Love to All of you.

    Feb 14, 2007
    Yes, this is the day that we will be going home from the hospital. Now the big surgery looms ahead. The date of the surgery is the 21st of Feb. We must be back here on Tuesday for Patty’s pre-op workup and stay overnight in a motel and then Wednesday will be the day. We don’t know the time of surgery yet. I will keep you informed as we know more. I know that some of you have expressed desires to be here for the surgery and we love you for that thought but Patty and I would rather be alone during the hours before surgery and the time after she wakes up. We know you will be here in your thoughts and in your prayers. Some of you might not realize that this is a life threatening surgery that carrys high risks. Many do not make it through the surgery and recovery. Prayer is powerful and if we ask the Lord’s help believing that He will help us, then He will.

    Feb 18, 2007
    Dear loved ones,
    It has been several days since we have sent you an email on Patty’s progress. We are still home waiting for the return to Tampa General. Patty is still having some pain and discomfort with her tubes sticking our of her sides. She is getting IV push antibiotics twice a day and the home health nurse comes out each day to change her dressings. We are so fortunate to have such a wonderful, caring nurse. She has taught me to do the IV antibiotic and the flushing of the midline and the flushing of the bilieary drains.
    Patty and I are spending the few days we have left before her surgery, just snjoyiing each other and praying. We relish each moment of each day together. One would have to be in this situation to understand how life changing it can be. All the routine activities fade away and the TV is turned off and we don’t even have an idea of what is going on in the news. We have found it to be a pleasure.
    We will be leaving home on Tuesday to return to Tampa. We will stay in a motel Tuesday night and will be at the hospital at 5:30 am Wednesday. The surgery is scheduled for 7:30. If you would like to get an update when she is out of surgery, check your email during the morning. if at all possible, I will be sending an email when she gets out of surgery. The hospital has a wireless guest net for internet and it makes it easy for me to take the laptop with me and get on line anywhere in the hospital.
    We want to thank you all for your prayers and wonderful emails and most of all how you care so much for us during this time of crises. Patty sends her love to everyone and she is calm and reassured that she is in the hands of her almighty God.

    Feb 21, 2007 8 am
    My dear sweet Patty left me in the hall at the door to surgery just minutes ago. She was clutching scriptures that LaDonna sent us that the prayer circle at church used when they were praying for Patty. She told me she loved me and I told her that I will see her soon. She smiled and said “I know”. She is at peace knowing that our Lord went into surgery with her. You are all here with me right now. I can feel the Lord’s presence here with me also. I will send emails as I know more. I have the internet here in the waiting room. .

    Feb 21, 10:30 am
    The surgeon just came out to talk to me. The news is not good, my dear friends. The cancer is too involved and tangled around the hepatic vein and arteries for him to get it. It was not removed. The sergeon told me that there is nothing more he can do but to keep her comfortable. She will be no better after the surgery than she was before and he says she might have 8 months to live. I realize the impact of this email. I am sitting here writing this through my tears and disbelief. Patty is loved by so many and I know that I am not the only one in shock right now. I belive that the Lord can intervene and if it is His will, she can be healed. As long as there is life there is hope. My dear friends, it is so good to have so many that love us so much. Please continue to pray for Patty. She is in recovery now and probably wont be recovered enough for me to see her for another couple of hours.

    Feb 21, 2007 4:30 pm
    At about 2 pm, I saw Patty in the hall outside of recovery for the first time since her surgery. She was awake and alert and asking how the surgery went. I told her to hold on until we got to her room and I would tell her all about it. I had spent the last two hours trying to prepare myself to tell her the news that we both had hoped would never come. Finally, after getting her settled in her room, I explained to her what the surgeon had told me. That he was unable to remove the tumor. I could not control my emotions. Patty accepted the news with the same trusting approach that she had about the surgery. She knew that the Lord was in control and what ever happened would be His will. I read all of your wonderful, loving emails to her. I can’t begin to tell you how much help it has been hearing from you all during this time ot trauma. She has not given up the fight. I can see it in her face. She knows that miracles do happen.
    She is resting now in some pain but on pain meds. She is amazingly alert after such a serious surgery. Her vital signs are all good and she is really doing well. .

    Feb 26, 2007

    We have much to be thankful for this Monday morning. Patty is feeling much better and had a good breakfast this morning and has not taken a pain pill since last evening and now she is sleeping peacefully as I write this email. It is so much easier to get the much needed and healing rest in a private room. The nursing staff have all been so nice and has shown compassion as they care for Patty. There still has been no talk about when she will go home so we are taking each minute and each hour and each day and enjoying the time that the Lord has given us. I was just sitting here this morning thinking about time. It has become so much more precious to us. When everything is going well and we are in our daily routine, we tend to take time for granted, especially the young feel that they have all the time in the world. God has given us each a certian amount of time on this earth. We don’t know how much that is but I can tel l you that when something like this happens to a person, time becomes a precious thing. Then I think about eternity and how this time on this earth is such a blink of the eye compared to living for eternity with our Lord and Saviour. Patty and I talk a lot about heaven and the joys of being there and thank the Lord that he has given us the choice of serving Him and being ready to meet him in the clouds of Heaven. Thank you Lord for loving us and caring about our eternity.

    Feb 28, 2007
    Patty and I arrived home from Tampa General Hospital yesterday afternoon. We had a safe trip with Patty resting in the back seat of the car. We will be returning to Tampa General Hospital in about two weeks so that the exterior bile drains can be removed. She will be glad to get them out. They require a lot of care. Thank you all for your continued emails of encouragement and your beautiful cards.

    March 5, 2007

    Patty is back in the hospital in Tampa. She had been running a fever and had a lot of nausea that just would not go away. I ran lab work on her today and she has a 23,000 white count. When the doctor was called he said to get her back up here. This is our 4th stay here. Those of you that have been following Patty’s progress will remember that she was very jaundice with a very high bilirubin. Here is a good report. Her bilirubin has dropped to near normal. Her jaundice is all but gone.We grasp onto every little ray of good news as a ray of sunshine.

    March 7, 2007
    One day blends into another here at Tampa General Hospital. We have a beautiful view from our private room windows. In the morning the sun glints golden on the skyscraper windows and the many beautiful boats are tied in their slips. It is such a beautiful, peaceful scene. Then in the evening we watch the sun reflects off of the windows from the opposite direction. I enjoy watching the two helicopters take off and land as they transport patients to and from the hospital. If it were not for the feelings of the unknown that hang over us, and Patty being sick, this would be a first class hotel and we would be on vacation. But then the nurses and doctors keep coming into our room and jolt us back to reality. Patty is battling a severe infection of unknown origin. The team of doctors are ordering several antibiotics. She has had xrays maybe a CT scan tomorrow. She still has a high fever and high white blood cell count. Tomorrow there should be some culture reports to help find the right antibiotic. She did have a little relief for a while and was able to come over and sit on the sofa with me today. She drank some orange juice which is the first thing she has had in her stomach besides water in six days. Tomorrow is another day and we can look forward more to it because we know that you all are praying for us. It is good to know that we are not alone.

    Mar 9, 2007
    Patty is feeling better today. She is asking for some of Murial Bradburn’s famous Burritos. This is the first time she has even thought she would like food since 8 days ago. Her fever is down to about 99.0. Her white cell count is down to 24,000 from 40,000. She took a trip down to radiology this morning to have the bile drains replaced. The doctors feel that the infection she has been fighting, was connected in some way with the drains. She had a CT scan last night and it showed that there are still pockets of fluid around her liver that might be causing some of the infection. So she is still fighting an infection.

    March 11, 2007.
    Patty’s white blood cell count continues to drop. She has had no fever in the last 24 hours. She still has had some nausea so has not been eating much. She felt well enough to sit in a chair with me this evening for an hour or two. She feels stronger also because she received two units of blood last night. They had to insert a central line because her veins are all giving out and won’t sustain an IV for very long. Her hemoglobin is now back up to 10.5 from where it was at 7.4 It seems that the doctors might have hit on the right combinations of antibiotics although she is now under isolation precautions due to a bacteria that was isolated called VRE (Vancomycin resistant Enterococci) so everybody has to put on masks and gowns and gloves when they enter her room. There is a good side to this. At least, at night nobody wants to come into the room unless they just have to because of the trouble to gown up, so we get a lot more sleep heh heh.

    March 15, 2007
    There just seems to be some new development each day to prevent Patty from getting her strength back. There has been no talk about her going home. It seems that it will be a while yet.I can look into her eyes and see how weak she is. She just isn’t her usual alert self. She is able to get out of bed to go to the bathroom and sit up for a while in a recliner. I give her all the love that is in my heart to give her. I live here in her room beside her 24 hours a day. I look into her eyes and say ” are you discouraged?” and with a weak smile she says ” No, never”. I ask her,”are you giving up?” and she replies, “no, never”. She knows that the Lord is in control of our lives and His will be done, no matter what.

    March 20, 2007

    We finally have the news we have been waiting for. Patty is scheduled to be discharged from the hospital Wednesday. She is going to have the biliary stents internalized today and she wont have to tote those terrible bags around with her. It means that the bile that is flowing in the bypass tube will all flow into her small intestines instead of coming out of drains that are now coming out of the sides of her abdomen. The reason for the bypass tube is to relieve the bile pressure that is being caused by the tumor blocking her bile ducts. Patty has been improving in her overall strangth although the constant nausea plagues her. If all plans work out, two daughters and 5 grandchildren will be coming in the next day or so to visit. It will be a special time of love and emotions. Email is the best way to communicate with us while they are here. Again, we appreciate all of your love and prayers and support. It will be good to get home after 18 days in the hospital. ( and sleeping on a sofa). Love and prayes to all.

    March 24, 2007
    I wish I could say that Patty is doing better but she seems to be weaker than ever before. Because of the nausea, she cannot eat much. She does not have the strength to get up much. The one good thing that I have to report is that the internal bile drains seem to be doing their job and she does not have to carry the external bags around and have the constant infection that she had with the external drains. Her fever is low grade and normal the last couple of days. My heart brakes to see how brave she is through all of this. She is suffering so much with the nausea and pain. We are leaning very hard on the Lord as she is suffering from this terrible desease. On my own, I feel completely helpless to do anything except keep her comfortable. I have an extensive natural healing program that I cannot even use because she cannot keep anything on her stomach.

    March 28, 2007
    Patty is eating solid food now. She is still very cautious as she eats but she is getting her appitite back and that means that I am starting to have to cook some. UH OH She is stronger and up a little now. Praise the Lord!! No fever or infections. It is wonderful to finally have something good happen after two months of Patty feeling just terrible. We grasp onto every tiny thread of hope. Just a few hours that she is without being miserable is such a feeling of euphoria. We know that the future is unknown and we leave it all in the hands of our Saviour. We savor every minute together.

    March 30, 2007
    I just wanted to give you another update on Patty . We are praising the Lord with thanksgiving that Patty is feeling better each day. She has been eating and the nausea has not come back. She has gained 4 lbs in the last two days! She is enjoying food again and drinking carrot juice. There is that beautiful sparkel in her eyes again and the smile that lights up the room. We pray each day that the next day will be better and that has been the trend. We think about you all as we worship with you on God’s Holy day that He has made for us. Happy Sabbath!!

    April 4, 2007
    Dear Loved ones,
    I guess you have figured out, by now, that no news is good news. Patty is still on the upward path to better health as the nausea is subsiding We are so thankful that she is getting stronger and keeping her appetite. The sparkle in her eyes and her sweet smile say so much and keeps me overjoyed with happiness. We enjoy each day and thank the Lord that He has given it to us. We pray for a good day tomorrow. Patty has not fired me yet as her cook and bottle washer. I have a renewed respect for you ladies that have so many responsibilities in the home. Your beautiful words of encouragement in your emails and cards are overwhelming to us. What a wonderful family we have!!! Tomorrow is a new day and we face it knowing that our Lord is in control and we accept His will.

    April 10, 2007
    It has been about a week since our last update on Patty. It has been a wonderful week of thanksgiving to the Lord. Several of you wrote emails a week ago, saying that you were praying specifically that Patty’s nausea would go away. I believe that your prayers were answered. She has had a wonderful week that has been nausea free. Patty has had a really good appetite and has been able to eat a lot of good meals. She has gained several pounds. She is regaining a lot of her strength that she had lost in the past two months. We have had a wonderful week together. Each day we thank the Lord that He has given us another day with quality of life that we can enjoy together. Yesterday morning she told me, ” I slept so well and awakened and felt to well that I forgot that anything was wrong with me until I felt the scar from the incision from my surgery. Then I remembered that I had liver cancer;and reentered the world of reality. ” Each day is so precious to us. Life has taken on a whole new meaning. We feel a renewed closeness in our walk with our Saviour. We are in His hands and accept what each day brings. Your love and Prayers continue to support us. We are humbled by the love that you have shown to us. Only alternative treatments are planned for Patty. She has decided against all chemo and radiation. We are placing her destiny in the hands of the Lord. Please continue to pray for us as we battle this rare cancer.


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