Living Nativity

Last night we went to a living nativity. It was really inspiring. I wasn't really in the mood to go before we went and it was sure to be crowded and cold. Earl and I had spent the afternoon at the hospital for his MRI and bone scan. I was right it was crowded and cold and I was grumpy. It was set in a gully on the east side of Salt Lake City and presented by several different churches I found this slideshow from the Deseret News this morning http://deseretnews.com/photo/slideshow/1,5587,500000000005211,00.html

If you have to pick the slide show it is "Night in Bethlehem"

By the time we got to the stable, my mood was softening. It seems that life gets so hectic and with Christmas upon us I just have not gotten into the Christmas mode. We are feeling the economic crunch so we have no money for anything. Earl's sister is paying for us to go to Seattle otherwise we would not be able to go. Christmas shopping has just not happened nor will it except for a little for Mary. The Nativity was just what I needed tonight to remember what Christmas is all about.

How do people without faith in God get through life? Some days it seems that if I didn't have my faith, I don't know if I could get out of bed. I am the ultimate pessimist. I am always waiting for the other shoe to drop. But I have faith that Jesus loves me and my family and watches over us and helps us feel loved as we are going through this challenge we call life. I don't know much more than this but I know that there is a God and that He loves each of us and he knows each of us by name.

Treatment postponed

Earl's billirubin is too high to have the treatment this week. We are working to get it down and hope that next week will be the week. We will be leaving for Seattle on the 19th and hope to have the treatment over by then. We have to trust that we are in the Lord's hand and that the treatment will happen when it should.

I am working to get all my orders done before we leave. I have 3 small orders and then a Nauvoo wardrobe for a missionary.

Here are two dresses that I have finished in the last week. The first is a version of our Sunday dress. This is the first one that I have made that is not blue. I really like it. I usually use purchased pleated trim but we wanted it to match so I made it myself. I really like the way that it turned out.

The second dress is made from the wrapper pattern. It is going to be used as a temple dress. I have thought for a long time that the pattern would make a great temple dress. I have a client that thought so as well.

The cool thing about this dress is that it is so adjustable. The front is loose with a tie belt that is attached at the side seams. The back looks like a fitted dress. The best part is that it is so comfortable.

Treatment rescheduled

Earl's treatment is going to be on Tuesday December 9. We do not have a time yet. On other issues, he is having a full body scan on Wednesday to determine if the fractured vertebra is from the cancer or from an injury. Also on Wednesday he is having an MRI on his back for the same thing.

Miscommunication

Because of a miscommunication, Earl did not have his treatment this morning. Currently we have not been able to reschedule. We are hoping to have it done before we go to Seattle on the 19th.

I thought you might want a link to see exactly what Earl is being treated with. This site has a great demonstration video as well as everything you would ever want to know about Therasphere treatment.

http://www.nordion.com/therasphere/patients-therasphere.asp

Another update

Its been quite a week. We have seen lots of doctors this week. Here's what we know:

Earl had his mapping done on Friday. Since then he has had terrible hiccups. First they would come and go. Sunday night they started being constant. Finally Tuesday we called the gastro- enterologist (Earl's main liver doctor)who instructed us to go the ER. The hiccups that had been constant since Sunday night disappeared as we walked into the hospital. They ran a bunch of blood tests and took CT scans of his abdomen and brain and couldn't find anything that would cause hiccups. We finally left at midnight. The hiccups reappeared about 2:00 a.m.

We had a Wound Care appointment this morning at 8:00. We walked into the hospital and the hiccups disappeared again. The wounds on Earl's legs are worse. They have been draining a lot. This morning they decided to change the type of dressing they are doing. Instead of changing it once a week, we are changing it every other day. I guess I am going to become a nurse whether I want to or not. I'm okay with the care giving, its the blood that gets me. Earl being very tired from having hiccups, and not being able to sleep or eat, slept through the whole thing.

After Wound Care, we went to the liver doctor. Earl's blood work looks surprisingly healthy. He reviewed the CT scans. The ER doctor noted a compression fracture on the L4 vertebra. At this point we don't know if the fracture is due to an injury or the cancer. We will be chasing that down next week after the holiday. Again Earl slept the whole time. After we left the doctor, the hiccups returned. Thankfully they have been gone for most of the afternoon and Earl has been able to sleep today. Maybe we will be able to go to Grandma's for Thanksgiving after all.

This afternoon we found out that Earl is scheduled for his next Therasphere's treatment on Tuesday December 2. He will be going in at 6:30 a.m.

Getting Ready for the next Treatment

We saw the radiation doctor last week and after some confusion, we are scheduled to start Earl's next treatment on Friday. That is when they will do the mapping. Mapping is where they use a catheter in his femoral artery to go into the liver and make sure that the path is clear and they are able to inject the Theraspheres. They also have to make sure that all the veins going from the liver to other organs are blocked so that the radiation doesn't escape and damage other organs. Since I am not very medically minded, I am not very good at explaining what they do. I only know that it works.

Earl had a CT scan before we saw the doctor and the report on that is that the tumors are breaking down. According to the doctor, the edges of the tumors are not as defined as they were before we started so the treatment is working. The do not anticipate that the tumors will completely go away but it will keep them from growing any larger for right now.

I have been working on another period dress that I will be posting soon. I am also working on a temple dress for a client. Ever since I first made myself the "wrapper" dress from my website, I have thought that it would make a great temple dress. This client had the same idea so I will post it when it is completed.


Mary entered her school's Reflections contest. She actually entered twice. Her first entry is a large ship that her and Earl put together. They made it from a large cardboard box. This was the second time that they have done this. Mary is a planner and she thought for quite a while about how to make the next one better. After she got it all planned out, they put it together. She won a second place ribbon.

The second entry was a photograph of tulips. I love this picture.

Mary loves to take pictures of flowers and I think she did an excellent job. She received an honorable mention for this picture.

Update on Earl and a new dress

Earl has had kind of a rough week. He hasn't been able to sleep much at night but he does sleep during the day. He was quite sick yesterday. The skin on his legs from the knees down, does not have much elasticity so when they swell, the skin splits open. He has open sores on one leg from the swelling. We took him to Wound Care at the hospital yesterday. They said that we were able to get it in time and has not gotten infected. He has been hospitalized twice because we let them go too long before. He has his CT scan on Monday to check on his liver and then Tuesday we have an appointment with the radiologist to determine the next step.

Earl's sister has genorously paid for us to be able to visit his family this Christmas in Seattle. We are very excited to visit family that we have not seen in a couple of years.

I made this dress for Earl's daughter as a halloween costume. I am really pleased at the way that it turned out. We copied the trim from a different style dress that was much more complicated to make than this one.

Weekly Update

It has been over two weeks since Earl's treatment. He gets tired easily, but can only sleep for about 5 hours at night. He does take naps during the day. He is still in "super organization" mode though when he is up. I can't find anything! Since he is more absent minded, he can't remember where he has put things. I am afraid, we are a lost cause. He has not been in as much pain as we anticipated. He does have some but I was expecting childbirth pain and it hasn't been that bad.

We had a good Halloween. The Gillmore's are really into Halloween. We have enjoyed seeing the family pictures as they have come through. We went to the annual ward Trick or Treat party at the church. Earl decorated the room. I always thought that he goes way over the top for Halloween. Now I know IT'S GENETIC!

Update on Earl

It has been almost a week since Earl's treatment. He is doing much better than we expected. He has had energy that he hasn't had since last year. He even called the doctor and wanted to go ahead with the next treatment this week! They won't do the next treatment for one month. It has really helped to have his son Charlie here.

Thank you all so much for your prayers. I'm sure that one of the reasons Earl has been feeling as good as he has is because of all the prayers that are being offered in his behalf.

Karen

Finished Dress

I have finally finished the dress that I have been working on for the past month. It has been a great experience but I am ready to move on to the next job. This dress is for a docent at the LDS Church Museum of History and Art. Some of the docents portray a pioneer that they have researched and using the museum artifacts tell about the person using first person reenactment. I have made several of the dresses for this program. This is the pattern that we started with.

My client wanted a few changes so we made it have a back closure instead of in the front. She wanted princess seaming and to have the bodice come down to a point in the front instead of going straight across the waistband. Then she wanted to have the fancy collar (called a berthe) be detachable so that she could take it off and wear it with a different collar. Finally she wanted the shirred area on the sleeves to be smocked instead so she did the smocking. She wanted to contribute something to the making of the dress.






Here is a picture of our inspiration





Finally we got it all worked out. The fitting was quite a process but we finally got it to work. In 1837 they were not using hoops yet so I made a quilted petticoat for her to give the skirt a little body without have to wear 3 or more petticoats. A quilted petticoat is like wearing a quilt attached to the skirt of the petticoat at the knees.



Here's the finished product.

The sleeves appear extra long in the pictures. They really are going to be extra poofy when there are arms and hands holding the cuff in place.






Now that it's done I can start working on the next order which is not custom so it should work up pretty quickly. I like the custom work but I also like to break it up with some straight sewing.


Earl had done really well today. He and Charlie are working to get Charlie's room cleaned out so that it's not like he's living in a storage room. They made quite a bit of progress today.

Earl had his treatment today.

Earl is very tired. He has slept most of the day. The doctor said that it may take a couple of days before we start seeing side effects. They have given Earl anti-inflammitory, antibotics, pain and anti nausea meds to counter the anticipated side effects. He will have a CT scan in a month to check progress. The doctor said that the first scan after treatment usually shows the tumors larger because they swell before they start dying and shrinking.

So now we just wait and see what happens.

I got a little emotional as they wheeled him to the angio lab. I guess I just hit reality today. On one hand I am hopeful that the doctors know what they are doing to extend Earl's life. On the other I am terrified about this not working. Most of the time I can wear the hopeful, matter of fact face. We are so lucky to live in a time when medical miracles are performed everyday. The procedures they are using are the newest, most successful yet. Someday they will have a cure and just maybe it will happen for Earl.

The rest of us are doing well.

Treatment update

Earl's treatment has been scheduled for Wednesday, October 15 at 6:30 am.

Earl's first treatment

Earl's first Therasphere treatment is scheduled for Tuesday, Oct 14th. He will be in the hospital for about 5 hours. We don't have an actual time yet.

Charlie (Earl's son) is coming on Saturday. We are very excited.

The good things in life

Now as I read through the prior posts I see how dreary and woeful they sound. We have been blessed through all of this. No one knows why the Alpha Fetal Protein test was done in May. It hasn't been part of Earl's regular lab tests. So its a good thing that they did it or we wouldn't have known anything before it was way too late.

I didn't have a heart attack. We found out some very useful information about my body before real damage occurred. I can work to get things corrected. Its not easy but I can do it.

Mary is the light of our life. She is 7 going on 27 sometimes. She makes us laugh. She loves to sing and she got a karaoke machine for her birthday. I just love to hear her playing pop star in her room.

If all this stuff had to happen it is good that it happened now instead of in the spring when business is very chaotic. Its hard to keep all the balls in the air right now. It would be impossible to handle all of this while trek season is just getting started.

We have definitely felt the hand of the Lord in all of this and it has increased our testimony that He know each of us and our struggles. He is with us and carries us daily.

General Conference this weekend was wonderful. I can honestly say that many of the talks hit home for me. I know that there are so many things going on in the world that are challenging for so many. I'm glad that I have the challenges that I have and not somebody else's.

We have good friends and good family. We are blessed.

Karen has her own health issues

On August 22, I thought that I was having a heart attack. We went to the ER (we feel like we have our own room now). After much testing, it has been determined that I have Arterial Fibrillation or A-fib. In very remedial terms, the top chambers of my heart beat faster than the bottom chambers. Because of this, my heart can not empty of blood allow it to settle on the bottom and form clots. A clot can cause a stroke. The doctors had adjusted my medication so that I have not had any A-fib episodes since I left the hospital. This is a genetic problem. I would have this problem even if I were not overweight. But since I am, it puts me at a greater risk for other heart problems. So I am trying to lose weight. I am taking a class through the hospital. I am working with the cardiac rehab unit to get my exercise up. Even though I am following the diet, if I don't exercise, I will not and have not lost much weight. I struggle to get to the rehab. I also have found out that I do not breathe efficiently when I exercise so I have to be hooked up to oxygen while I work out. I have oxygen at home for night so I can work out at home as well as the rehab but it severely limits the places I can go for a work out unless I invest in transportable oxygen.

So now you are all caught up on our family, the next posts won't be so long.

The rest of the story. Chapter 3

Next we headed to the Cancer Clinic. The official name of the cancer is Hepatocellular carcinoma. It is deadly. There is no cure. Without treatment the survival rate is less than one year. With treatment survival is longer. How much longer we will just have to see.

The treatment is very new. It is called Therasphere's. It is a type of radiation. They inject microscopic radioactive glass beads right into the tumor through a catheter in the thigh. These beads are short acting. They only kill the cells that they are in contact with. The injection is an out patient procedure. Earl does not have to be in isolation. To prepare for this, Earl had to have a catheterization done last week. The radiologist put the catheter in his leg and up to his liver. He checked for veins that were going out of his liver to other areas of the body in the region of the tumor. There were three. These had to be plugged with something they called coils. We are now ready for the treatment. We believe that the first one will happen on the 15th.

The rest of the story. Chapter 2

We met with the transplant clinic and found out that Earl's tumors (there are 3 or more) were too large to be considered for a transplant. There was the possibility of treating the tumors with radiation to get them to shrink down to the transplant criteria. We were still positive. We decided to obtain a second opinion. Some very good friends of ours have brother that is a transplant surgeon and he agreed to review our case with us. When we saw him, he told us everything in language that we could understand. He was very good at translating the medical terminology into ordinary people talk. The bottom line is that there are certain criteria for obtaining a liver transplant. If you have a tumor that is under 5 centimeters, and you can do radiation to shrink the tumor to under 3 centimeters, then you may be eligible for a transplant. Earl's main tumor is 6x9 centimeters and it is in a bad place to be able to completely remove the tumor with a transplant. Because you have to take anti-rejection meds for the rest of your life, the tumor that has not been completely removed will be allowed to grow wild. Thus making a liver transplant a terrible option. So what next.

The rest of the story. Chapter 1

Just after we found out that we were expecting Mary, Earl started getting sick. At first we joked that since I wasn't really having morning sickness, he was. Then it started not being funny. It was happening way too often. We ended up in the emergency room and were eventually introduced to Dr. Boschert, a gastroenterologist. After many tests it was determined that Earl has hepititis C, a chronic liver disease. We were told that a liver transplant was most likely in our future. There is a treatment option called pegylated interferon. We tried the treatment after Mary was born, starting in December 2001. The treatment didn't work for Earl's genotype of the disease. For the last seven years we have been in kind of a waiting mode. Waiting for Earl's liver to be bad enough to need the transplant. All the while, Earl gets very tired, very quickly. He is more suseptable to infections. Because his liver doesn't work properly he gets a little absent minded. He hasn't been well enough to hold a job. He might feel great one day, then the next day, he can't get out of bed. So that is how we have been living for almost seven years.

In April 2008, Earl had his annual CT scan of his abdomen. Everything looked pretty much status quo. Then in May, Earl was in a car accident. He broke his leg but it wasn't detected on a regular X-ray, so we made a couple of trips to the ER trying to get help with the pain. On one of those trips, they took blood for a test for alpha fetal protein (AFP). It was slightly elevated although we didn't know this at this point.

In August, we met with Dr. Boschert for a regular visit. He noted that the AFP was elevated and told us that this test is a tumor marker. He wanted to re-do the CT scan and the blood test. We repeated these and found out that Earl indeed has tumors in his liver. We thought that this might be a good thing because it would get him a transplant sooner.