Short Health Update

Everyone,



Just a quick health update. I had my second Retuxin treatment this week and it went well. No side effects. I am feeling good. I don't have much stamina yet but that will come as I build my strength back up. I saw my doctor on Monday. She said she would be hyper vigilante with me this first 6 months since my disease has been so atypical. I am going to have a scan of my lung the middle of the month. She is hoping the mass will have shrunk or even gone away because she "doesn't like it". The end of the month I will have some blood work done which MAY tell us if I am going into remission but won't be definitive because I will still be on the steroids. It will take almost the whole 6 months to wean me off of them. I asked her some questions about my disease like Will I likely have times when it will break through the remission and flare again? She said, "Normally I would say 'Yes this is a disease that tends to flare'. However once again yours is so atypical that I really don't know what to expect, maybe not." I asked her if it would shorten my life and again she said, "Normally I would say 'Most likely because the mortality rate is higher for people with this disease and then you have the added risk of the medications we have you on.' Again yours has been less aggressive than normal so maybe not. We just really can't predict." She said if I go into remission we will try to treat with the Retuxin every 6 months but if I break through I will have to go on other oral drugs for maintenance.



I am getting along with my eye although I still find it bothersome and have trouble seeing as well as I might. Some of the problem is that the steroids affect my vision in my good eye making it somewhat blurry at times but that will go away once I am off of them. I am glad to be feeling well enough to help with preparations for our daughters wedding coming up on the 10th. Our kids and grandkids from out of town will be arriving tomorrow and we are looking forward to a week of family time. Please continue to pray for Kent and I and the decisions we are facing. We love you all.



Myrna

Short Health Update

Everyone,



Just wanted to let you know that I am feeling GREAT. I am having NO side effects to the Rituxan or the Steroids other than a drippy nose. I am getting stronger each day and am enjoying life again. Vicki McCracken took me for a day of shopping for some new clothes. I wouldn't recommend the "protracted illness" method of losing weight but it IS effective. Though I was exhausted by the end of the afternoon I finally have clothes that are not falling off me. We are spending a few days with my parents and yesterday my dad and I went to the local farm and I cooked us a dinner of mostly fresh vegetables and fruits that night - corn on the cob, fresh beans, a huge salad, fresh fruit salad etc. It is SO nice to enjoy cooking and EATING again. Our kids came over and it was nice to spend time making some plans for Katie's wedding and knowing I can enjoy it and even help with some things.



We will be moving for the next couple of weeks to our sister in law Barbara Morley's home in Willamina. My brother's Daughter and her family are coming in from England for a month so we needed to give them the space there. We will enjoy being with Barb and Kent is looking forward to completing some small projects that need doing around her place.



I have another Rituxan treatment on the 24th of July and a Dr. appointment on the 28th. At that point they will begin weaning me off the steroids which will take about a month and a half and if my inflammation levels stay down I will be in remission which is of course our goal. Thanks for all your prayer - please continue to pray with us as we wrestle with where God wants us to be and what our future life will look like. We love you all and are feeling grateful, blessed, happy and hopeful.



Love, Myrna

VERY IMPORTANT HEALTH UPDATE

Everyone,



Well this is the biggest roller coaster we have been on to date but in the end we think we have landed in a good place although not without some loss along the way.



On July 5th I lay down to take a short nap and woke an hour later unable to see out of my right eye. It was completely blind and so Kent immediately put me in the car and headed for the hospital. When they saw me in the emergency room they were very concerned and talked with a neurologist and ophthalmologist and it was determined that it was best for me to go to a larger hospital and see the ophthalmologist first and then go from there. However the emergency room doctor said "I am telling you I am scared so I want to give you another half an aspirin and please go straight there." We met the ophthalmologist and he examined me. He said that the blood flow had stopped to my right eye and that the retina was already destroyed and there was almost no chance that I would regain my vision in that eye. His bigger worry however was that it was being cause by a clot that had perhaps been thrown from my carotid artery and that he wanted me admitted immediately to the hospital on stroke protocol.



I was admitted and told I was not to raise my head above a very low level or get up or eat or drink anything for the first 24 hours. I was also taken down almost immediately for a CT scan of my carotid arteries. Though this showed that my arteries were clear I was continued on stroke protocol in case there was still a chance of it being a clot from my heart or elsewhere. Our second biggest concern besides a stroke was that this could have been caused by a disease called Giant Cell Arteritis which often takes the sight in the other eye with a few days to a week. We were fairly devastated over the loss of one eye but could barely even face the thought of losing my other. The decision was made to start me on massive doses of steroids 1000mg a day 250mg every six hours by IV as the best chance of protecting my other eye. There was still a 10% chance it could happen but at least the risk was greatly reduced. A decision was made also to do surgery the next day and remove a piece of the artery that runs down my right temple to biopsy it to determine for sure if this was Giant Cell Arteritis although we had already begun to treat for it.



In a side incident as they had been doing the CT of my carotid arteries they caught on the scan the top portion of my lungs. It was discovered that I had a mass on one lung that had not been there three months ago. They felt they would most likely need to go in and biopsy that which is a fairly major surgery so the doctor wanted a full scan of my lungs first to see if there were other masses or only this one. Since I was due to have a scan of my kidneys again they just did a full abdominal scan. There we no other masses in my lungs but they did find something on my spleen. By this time I had 11 different doctors in different fields involved all trying to piece this together. They were all talking, consulting, going over all the previous history and adding new tests. It was felt that this was likely some type of immune disorder that involved vasculitis which is where inflammation causes the artery to swell and close causing a loss of blood flow just as if there were a clot there. The treatment for all these different diseases starts with massive doses of steroids which we were already doing.



That night God gave me a very special blessing. My night nurse was a woman who had been blind in her right eye since college and also has Meniere's disease and is deaf in her left ear - exactly like me. She was such an encouragement to me and so understanding and kind to what I was going through that in a short time I had really worked through grieving over the loss and was able to see it as a learning curve. There have been some funny incidents already. I no longer have depth perception so have poured a glass of juice on the table thinking I was pouring it into another glass with ice, I have yet to get my toothpaste on my toothbrush on the first try and navigating crowed corridors here at the hospital is very scary and I am thankful to have Kent by my side helping to guide me. I know it will just take time to learn how to compensate. I also was have many hallucinations where shadowy figures either pop up beside me on my blind side or I suddenly see a figure standing beside me. They are of course not really there but it is startling and disconcerting. This is a normal part of my optical systems working it way through the new blindness and has already greatly improved.



The next day I saw the retinal specialist who confirmed that the sight in my eye was gone. I had many other blood tests and consults with various doctors. On July 8th we met with the head of ophthalmology who also happens to be the leading rheumatologist in the area and teaches at the University as well. He surprised us by saying "I am sure it is Wegner's Disease or as it is now referred to as Granulomatosis with Polyangiitis or GPA." I had actually heard some pretty scary things about this disease and said to him "How freaked out should I be?" His answer was "Not even a little" He said in the last few years they have come up with some new treatments for this disease and have been very successful in getting it into remission and keeping it there.



The treatment for it are the massive doses of steroids which I am already on and then adding a two round treatment of chemo therapy (Rituxan). In fact as I am writing this the nurses have come in to get me ready for the chemo so I will finish this in the morning.



I had my chemo last night and it went very well. The actual chemo started flowing into me at 9pm. They start it slowly constantly monitoring you for any reactions. Each have hour for the next 2 hours they increase the dosage if you have not had a reaction. I did well and by 11pm was up to full dosage it continued then at that dosage until 3pm. So far I have not had any side effects and even ate a good breakfast. I am now off the IV steroids and am on oral steroids still a massive dose of 80mg per day but will be able to go home today. I will need to rest and be careful the next couple days as the chemo works through my system but then should feel pretty well. I will have another round of chemo in 2 weeks and then they will gradually begin weaning me off the steroids. The hope is that in two months I will be in remission. If not they have bigger guns to hit it with but don't want to use them if they don't have to. If I am in remission they will watch me closely for the next 6-9 months doing regular scans, blood work and just keeping a close eye on things so that I don't come out of remission. I will be getting a "bump" dose of Rituxan every six months to help me continue in remission as this is something I will always have but if it flares up we will just knock it down again.



The BIG question for us is what does that mean for our future. We have always desired to go back to Greece and plan to spend this next couple of months while they are trying to get me in remission praying and seeking the Lord on whether that will be possible or not. We know that I will not be able to be there for at least close to a year and even then we are questioning whether it would be wise for us to be there without the oversight of our doctors and with a compromised immune system. If we were going back we realize that Kent would need to go on ahead of me and get back to work sooner. Perhaps coming and going during the 9 months following my remission until I am well enough to go as well. He has asked International Teams already a month or so ago to find a new team leader either way so that the team will not be impacted too heavily whatever happens. What we would ask of you is you diligently pray with us that we would hear God on what He is saying about us returning to Greece or deciding that it is time for us to return to the states. As I said we are using this next two months of waiting for remission to try and come to some sort of decision. It will be difficult either way. I am VERY frightened at this point about going back with this disease hanging over my head. On the other hand it would of course be wrenching to us to leave the work we love there and then for Kent to find work here in the states and for us to know what that all looks like. Pray for peace, pray for discernment, pray for unity of mind and most of all pray that we hear the Lord. I know that last year has been a trial for all of us and we are so grateful for you standing with us financially and in your constant prayer support. That support is so important to us going forward in whatever way the Lord leads and we are so thankful for the team of people we have. We may not see the future but we know who is holding the future and trust that in His timing the best will come. We are feeling blessed already just to feel we are perhaps on the road to me being somewhat well again and are continuing to take it a day at a time. We love you all and truly could not do this without you.



Serving Him Together,

Kent and Myrna Morley
Tripoleos 76
Elliniko 16777
Athens Greece
011 30 210 96 38 625
backhoeboy1@gmail.com
http://kent-uniquelymorley.blogspot.com
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Doctor's Appointment

Everyone,



I know people are wondering how my doctor's appointment went yesterday so thought I'd write a short note. I didn't write yesterday because I spent the afternoon and evening in bed throwing up every hour or so. I have been nauseated for several weeks with it getting increasingly worse. I blamed the antibiotics I have been on. The doctor took me off them on Monday so am hoping I am still just getting them out of my system - I felt a little yucky this morning but am better now. To top it off my brother brought home a nasty cold last week. My sister in law was next and I came down with it yesterday (hope Kent avoids it). Thankfully it only seems to last a couple of days.



Anyway the doctor's appointment went about like we expected. She took the history and examined me. Gave me a number to call to set up a scan. Said she hadn't received the pathology reports or the tissue samples yet so she would request those. She said "The answer is in that tissue and maybe I am over confident knowing how many other doctors have looked at this but I can't imagine that we won't find it or that we won't at least come up with enough data that we can propose a reasonable course of treatment." She said it would take a few weeks to run all the tests so I have an appointment for July 29th but they will call me if they find out anything sooner.




Please pray that my nausea will clear and I can begin to feel stronger during this time of waiting. Our daughter's wedding is coming up on August 10 and I would like to be able to do a few things in preparation for that. Thanks for all the prayers and support I don't know what we would do without you. Love, Myrna