Sunday, January 23, 2005 11:59 AM CST

Good morning,

Well, we are still here at Sister Kenny Rehab at Abbott Northwestern. It's been a pretty long week, but Ron gets stronger and better every single day. It is fun to watch him improve each day. They are keeping him very busy with a full schedule of therapy.

When he started walking, the therapist pretty much had to slide Ron's left leg through and help lock his knee. Now He can slide his own leg through and he wears a knee brace to help keep it straight as he steps with his right leg. So currently they are working on his turning and sitting and on his balance. He has to reteach his brain what standing straight feels like. He tends to lean left and think he is standing straight, so when the therapist pushes him to be straight his brain thinks he is going to fall over so it fights it. But that too is improving every day.

He is able to move his arm a little as well. His fingers and forearm he is still working on. It is all coming slow but sure. He can use his shoulder a little bit, he can almost get his elbow up on the armrest of his wheelchair. I don't remember if I told you or not, but the way it works is that the brain, if not forced to use the left side, will forget how to use it. It will just "get by" without it. Even when it comes to looking at a picture or reading. At first he didn't look all the way to the left he would just see what was on the right side of the paper. But now he is more aware of it and usually looks all the way to the left of whatever he is looking at.

He pretty much can transfer himself from bed to wheelchair, and wheelchair to bed. Sometimes when he is really tired you can tell because he needs a little more help.

He is eating more than I've seen him eat since October! He is eating soo much! It is great. We've been brought quite a bit of homemade food so he usually eats most of his hospital food (depending on what it is) and some of the snacks and meals that have been brought in for us. He sleeps pretty good too, most nights anyways.

We had a family conference last Thursday with his primary physician and our social worker. They are pleased with his progress, and think he'll be ready by next Sat to test out what he's been working on and come home for 1 evening. We'll be able to leave here after therapy on Saturday and bring him back Sunday afternoon. Then they think he will be ready to come home for good on Feb 2nd!!! Oh, we can't wait. He wants to come home so badly. He only has to sleep here 9 more nights. He hasn't been home since the morning of the 10th. So we hope this week and a half goes by quickly.

Once he is home, he will still need someone home with him all the time, so we'll be taking turns staying home with him, so I can work most days. He really just wants to sleep in his own bed. It will be many months before he is back to his normal self or driving, but he will be strong enough to get around pretty good and most importantly, safely at home.

I know our plan was to have a great 2005 with no setbacks and nothing but improvements, but we just need to get past this first. I still have no doubts what so ever that Ron will make a complete recovery. It will take time, but he will do it. I want to thank you again. You all know what a long year it has been for us. (not even a year yet, Feb 20th was when we found out the first time.) It has been stressful and scary, but through it all we've had the underlying love of our Father in heaven keeping us in his arms and holding us tight. And we've had constant support from all of you. We have grown closer together and closer to God as well, so we know it was not time wasted. No matter what hardship we face or how we are hurt we will lean on Him to carry us through. We love you and appreciate your prayers and concerns. It has been great seeing some of you. Until next time, take care.

Saturday, January 15, 2005 11:32 AM CST

Hello everyone,
First off, I'm sooo sorry that I haven't had time to get you more information on Ron. It has been so busy, it is very hard to find time for everything. This is the first I've been online since this all has happened. I wrote the last one, and my sister got it entered online for me. Thanks Lori!!

Let me get you all caught up.

Wednesday 1/12/05 started out to be a great day! Even though we were up most of the night again (only 2 hours of sleep) with heartburn and hickups, Ron was walking basically by himself. Of course we were right there "just incase" but he did wonderful!! The physical therapist came to work with him and he walked to the end of the hall (maybe 50 feet), she had a belt around his waist to support him if he needed it and I was in control of the IV pole. We then sat on a couch and rested for a little while talking, there was a big window looking out over the river. Much nicer than our stuffy little room. Then he walked back to his room with no help! He hadn't gone farther than the bathroom since we arrived there Monday. We were all very excited and encouraged by his quick progress! He was happy to be up and out of the room.

They came to get him for his swallowing test midmorning. They gave him different textured things to swallow and then watched through an xray thing to make sure it was going down the right tube. I got to watch on the screen, it was soo cool! I saw the food in the back of his throat, then a little flappy thing opens and it gushes down to his stomach. His test went perfectly! The speech pathologist told us she hadn't seen one so good in 4 years! She said they usually don't turn out as well. If it wouldn't have gone so well, they probably would have looked at doing a temporary/permanent food tube depending on if he recovered or not. Thank God that it was perfect! At least that is one thing we don't have to deal with. Since they were in there looking they followed it all the way down to check out his esophagus. The doctor said there was no signs of a tumor in there from the original cancer! We were so happy after that test! The best news we'd had in 3 days! It was good to hear.

Then came lunch! He got to eat! Although his heartburn was so bad he couldn't eat much. He rested for a little while and then the next time he got up to go to the bathroom he was so weak, he could hardly sit up by himself. We figured that 2 days without eating or sleeping would leave anyone exhausted. All he was getting was saline solution through an IV. No nutrients, nothing. So we was really wore out. He slept on and off the rest of the day.

We got a little more sleep that night, (what day are we one? Wednesday night I think!) About 4 hours total. The heartburn and hickups were finally gone, but we got a new roomate around midnight and the doctors and nursed were in talking at the top of there lungs to him. So we were up until they all went away.

Thursday morning (1/13/05) we realized he had lost the sensation in his left side again. He couldn't even feel it if we touched his arm or his leg. The doctors had told us that strokes usually get worse before they get better because swelling occurs. Usually day 3-5 after the stroke.(we were on day 4) So we had to start using the wheelchair even to take him to the bathroom and back. He was eating a little more, but still pretty weak most of the day. By the end of the day his overall strength was getting better, he was able to help support some of his weight with the right side, but still no feeling in his left side.

Also Thursday afternoon we were released from the Fairview University Hospital and sent to Sister Kenny Rehab located at Abbott Northwestern Hospital. We arrived here around 3pm. We been inside for 4 days straight, and now that it got really cold we had to venture outside. Bummer! But it was definately nice to get out of the hospital.

He didn't start therapy that night, we got his room and were visited by a doctor and nurses. We were given some basic information about how things work here. When they first did there assessment of Ron it was before he had gotten weak again, so they were surpised to see that he couldn't feel his left side. Last they'd heard he was pretty much walking on his own. Their original forcast for him was about a week, but when we got here and saw we have taken a small step backwords, they said more likely 2-3 weeks here.

It is an inpatient acute rehab. He will get approximately 3 hours of therapy a day, usually broken into 1/2 hour increments. 3 in the morning and 3 in the afternoon. There will be 3 areas that they work. Physical therapy, Speech therapy and Occupational therapy. He'll receive therapy 6 days a week. Saturdays will be a little shorter day, they say usually 1 of each session. And Sundays are his days off! Everyone is very nice and we've heard some good things about this facility. There is a common area right next door to his room that has a couple couches, tv, keyboard, big table to play games and a kitchen. Also a couple of computers (which is how I'm in here doing this!) Ron is currently winning my mom in a game of dice!

Yesterday (Friday 1/14/05), early in the day he gained a small amount of the feeling back in his arm and leg. He had a full day of therapy. They really worked him hard. It feels good to be starting on the road that leads us to going home. He is really anxious to go home. They had him up walking and starting to work those leg muscles with a lot of help with the therapist, but he was able to move them just slightly. It is very interesting to watch how they do that. They have a "real life" area set up, little markets, an office desk, cars, mailboxes, kitchens. All different scenarios to simulate and help people regain whatever skills they need to. Extremely cool. He was very tired by early afternoon. But it was a good tired from actually working instead of just laying in bed all the time.

They came in the afternoon and told us that they wanted to have an EEG done and also an MRI done to see if there is any more structural damage done since the recent weakening that happened. Instead of assuming it was swelling, they wanted to take a look. So for the EEG they glued probably 20 different electrodes or some kind of wires to his head to see how it was working. Ron told them they weren't going to see anything up there, just a black hole. But I saw a bunch of lines moving all over the computer screen, so something was making them move!

The neurologist came in after the tests were done around 10pm or so to talk to us about the results. The EEG showed the right side a little less active then the left. Which she said was normal after having a stroke. She said it really didn't mean anything, and wouldn't affect him in anyway.

The MRI unfortunately showed more damage which means that he did have an additional stroke/strokes. The damage was done on the top central/ or sensory part of his brain which explains the loss of feeling in his left side. (although last night he did have all the feeling back in his limbs! Which is great!) She called them cordical strokes, little tiny strokes. We asked, if they would continue to happen what we do from here. She told us that they can be controlled with blood thinner, but it is a balance they have to find. With enough thinner, it should prevent strokes from happening, but if the strokes are still happening they don't want him on blood thinner because it could result in bleeding in the brain which could be fatal. So they've started him on heperin through an IV.

Ron asked if this could be a result from the whole brain radiation. She told him she didn't think so because it is in the wrong part of his brain to be from that. She said he just has really sticky blood, and he probably has these tiny clots all over his body. It's just the rest of his body doesn't care, but the brain is very sensitive. We were also told a long time ago (in feb 04) that cancer causes the blood to thicken, so that is probably what is it from.

Because we got the bad news so late last night I just stayed here with Ron on the bed like I did at the hospital. (Thursday night I went home for the first time since Monday) He was pretty lonely that night. That will be a hard part about this for him I think. His spirits are good and he is determined to get past all of this. We thought 2005 was going to be better than 2004 for us. It hasn't started out the best, but maybe we'll just get it all over with right away!

Today he is stronger and got alot of sleep last night so he is feeling good. He had some therapy already this morning, and a couple more sessions this afternoon. Otherwise we are just hanging out this weekend. We need lots of prayers to stay strong and not waiver. We know our trust is in the right place and we'll make it through this. But sometimes it gets hard. Ron has a great attitude and as we all know is very stubborn! Thank God for him!

I will try to not take so long before my next update. Thanks for being patient with me.

PS. I've posted a flyer that my dad made in the photo albulm. He has arranged for a Pizza hut night fund raiser for January 25th. There are 10 locations participating if any of you like pizza!

Thanks again and we love and appreciate you very much.

Tuesday, January 11, 2005 10:39 PM CST

On Friday January 7th Ron was drained for the first time in 6 weeks! It was only .8 liters (just over 3/4 of a liter). Much improved from 2 liters every other day.

Well, we’ve had a new bump in the road come upon us, and we need more prayers for strength and perseverance.

We found out yesterday evening(1/10) after a long day of testing and waiting that Ron suffered from a stroke on Sunday(1/9) around noon.

The first I noticed was he said something to me and I couldn’t understand him, I thought maybe it was muffled in the pillow but when I looked at him, his left upper lip was drooping(for lack of a better word). I asked if he was OK, he said “yeah, why?” I told him he was talking funny and he said he didn’t know why. Our first reaction was his medication. He had just taken his morning pills shortly before it happened and he was perfectly fine before that. His left arm also appeared a little unusual.
He said he wouldn’t take his pills that night and see if it went away. It didn’t quite make sense because he’s been taking the same meds for months. Even less than he used to. But he had been tapering off the steroids for the last month and had just completely finished taking them a week prior. So we thought maybe it was withdrawal or something from coming off those.

Through out the day he said he felt spacey or drunk, something just wasn’t right. By the evening he hadn’t gotten any better so we knew we’d be going in to Parker Hughes Monday morning. I was talking to a friend of mine at work to let her know I wouldn’t be in and she mentioned it sounded like a stroke. I got off the phone and told Ron what she said, and I also told him when I first looked at him that morning my first descriptive thought was that’s what it looked like. I never would have thought that I had to worry about Ron having a stroke or to look for it.
So we went into the ER at 11pm to make sure. They did CT scans and they showed that there was no bleeding in the brain(a sign of a more severe stroke). They said there was nothing else they could for us that night, other then giving him blood thinners which we were already giving him on a regular basis. So we went home and went in to Parker Hughes the next morning(1/10). They did MRI’s, MRA’s and PET scans. Then they sent us to the U of M to meet with the neurologist. We’ll be here for a few days.

We really don’t know a lot. It seems like we’ve been here a long time and talked to lots of doctors and therapists but they were all collecting information from us and evaluating Ron, but we didn’t get anymore information from them. So hopefully tomorrow maybe we’ll get more insight and glimpse of what is to come.

It has affected mostly his left side. His left lip is slightly drooped but improved from before. His speech is pretty good. Maybe a little slower response at times but coherent and everything. His left leg was pretty sluggish yesterday and his balance was all off kilter. Today that is considerably better, still a little slanted to the left but pretty stable on his own. I think his left arm has the most visible effect. He has some strength in it when they told him to push or pull it. He has a hard time moving his fingers and it is slow to do what he wants it to.

They are also making sure he is swallowing properly. So he couldn’t eat or drink anything until he met with the speech pathologist. Their concern is that if even small amounts of food or anything go down the air tube instead of where it should go, it could get in his lungs and he’d get pneumonia. That is something we just don’t want.

We met with the speech pathologist this afternoon and the food seemed to go down pretty good but he had to clear his throat a little afterwards. So she wants to have a Barium swallow test done before he can eat. That won’t happen until tomorrow(1/12). So it’s been two days since he has eaten and he is really hungry. I feel bad eating in front of him, but I can’t not eat too or I won’t make it. So hopefully tomorrow we’ll have a good test and he’ll get to eat!

It seems as soon as things are going so well something else comes up. But this is just one more thing to overcome. We expect and believe Ron will get 100% of his mobility back. He has beat all the odds so far. He isn’t going to stop that now. We know that with God all things are possible. As hard as this is and as many questions that there are unanswered we trust in God to continue to care and provide for us as he has done all the way through so far. He is what carries us through and where we get draw our strength from.

One last bit of good news is that the MRI’s showed that the cancer lesion in the brain is even smaller than it was in the last scan done, so that is GREAT!

Thanks for everything. I can’t tell you how much we appreciate your continued prayers and love. I’ll get you more details soon.

Love
Ron and Kathy

Wednesday, January 5, 2005 1:26 PM CST

Happy New Year!
I trust you all had safe and happy holidays! Ours was nice, we stayed home all weekend. We had company over most of it. It was nice not to have to go anywhere!

Well, like I said last time, we waited until Thursday to get Ron's labs done before chemo. His counts all looked just fine, so Ron did get chemo and stayed right on schedule. As usual after chemo he felt pretty cruddy. So we just went home and relaxed. We picked up some KFC for dinner on the way home, and unfortunately something he ate gave him horrible heart burn. He was up most of the night. Finally around 3 am he threw up and then he felt much better and was able to sleep the rest of the night. It is just too bad he had to go through that to get it.

He thinks it was a combination of the chemo and the heartburn, one or the other would have been fine, but between the two, he just couldn't take it.

He felt good the rest of the weekend. Like I said we had company and played games and just hung out. Come Monday he was pretty tired and he slept most of the day.

Yesterday morning he went into Parker Hughes for follow up labs to make sure he is doing ok after the chemo and to see if he needs any shots to boost white or red blood cells. All of his counts again looked just fine, Thank God! No shots needed!

Then last night on my way home from work, he said he wanted Dairy Queen. So that's what we had for dinner. We haven't eaten fast food for quite a while until these last two meals and neither one sat well with Ron. As soon as he ate, he felt awful. His stomach hurt. Again he was up all night getting sick on and off until around 3AM this morning. So I decided to stay home and make sure he was ok. He still doesn't feel very well, but a little better than last night. He is really tired.

We are thankful that most days he feels pretty good, all things considered. We still have a long way to go though. We pray for God's continued strength and patience and healing for Ron to help him endure this journey that he is on.

Thanks to all of you for remembering us still and keeping us in your prayers and thoughts.

We love you.

Tuesday, December 28, 2004 6:34 PM CST

Hello!
I pray that each of you had a blessed Christmas that found you with health, peace, and happiness!

Ron and I had a wonderful and relaxing Christmas. We definately got what we wanted for Christmas...of course just Ron!

There really isn't anything new to report except that we went in to Princeton on the 23rd to see how much fluid was in Ron's abdomin...there wasn't enough to drain! We were so excited! Tomorrow makes 4 weeks since the last time he was drained, and he is not feeling at all bloated! He is still my Miracle Man!

I'm very excited to tell you that absolutely nothing has happened since then! We go in for chemo on Thursday. Ron was a bit bummed that it is so close to new years, but what can you do. He was actually supposed to get labs done today to make sure he is ready for chemo. He called and told them he didn't want to drive an hour one way today just for labs. They told him he can wait until Thursday morning if he really wants to, but if his white blood cell count is down he won't be able to get chemo. (He said "oh well!" and she laughed at him.) You see, if he went in today and the count was low, then they could give him a shot to boost it so he'd be ready by Thursday. Now, if it is low I suppose we'll wait until Monday or something to get chemo. (That is kind of what he wanted anyways.) So we'll see what happens. I hope it doesn't mess up the schedule too much.

Hopefully once we meet with Dr Ucken in January, he'll only have to go in once a quarter anyway.

I don't think I have anything else to report except that we wish each and every one of you a fabulous New Year! May God's blessings be upon you and may your eyes be open to see them, big and small!

Kathy & Ron

Tuesday, December 21, 2004 6:16 PM CST

Hello everyone,

It never ceases to amaze me how fast the number that says how many times the site has been accessed goes up. We've gone past 10,000! That just blows my mind! You will never know how much your continued support & prayers mean to us, Thank you.

Last Friday, 12/17/04 Ron had his PIC line removed from his arm. The option care nurse (the nurse who came out to the house to show us how to use the TPN, and change the dressing on his PIC) took it out right here. Ron and I both thought he'd have to go into the hospital again to get it removed since he had it put in at the university.

She just cut the two stitches holding it in, and then pulled this really long thin tube out of his arm. She told us the tube went right up to his heart, but it was not in the heart chamber. It surprisingly didn't bleed that much either. Ron's arm was sore for just a couple of days, but that was it. So no more flushing those lines every morning and night with heperin. One less thing on our daily "To do" list!

The only other thing I have to tell you is of our discussion that Ron and I had with Dr Ucken yesterday...

We wanted to determine if Ron had to complete all 20 treatments of whole brain radiation. (He had done 17 through last Friday)

Dr Ucken said that since Ron will be on Temador (the chemo pill for his brain that he takes 5 days a month)for the long haul, probably 1-3 years. And also since we have already seen the scans of his brain and know that it is smaller and not active anymore, he told us there is no studies that show that the last 3 treatments make that much of a difference. If it is going to come back fast, it will come back fast regardless of those 3 treatments. So it was up to us if we wanted to stop or not. So Ron was originally scheduled to get 3 more, yesterday through tomorrow...but nope! We are done! If we had not done scans already to see the progress, he would have had Ron finish all the treatments. Thank goodness we did those already!

After having the weekend off from radiation Ron has most of his taste back today. If he would have done radiation yesterday, he'd be starting all over again. So he is REALLY looking forward to Christmas dinner!

The Dr also told us that he wanted to set up meeting in January to discuss his treatment plan for next year. He is thinking of changing the drugs that Ron gets through the IV every other week, and maybe only have him get it every 3-4 months!! Ron and I looked at each other and asked if he was serious!! That would be great! So we have some things to look forward to! I cannot thank you enough for all of the prayers that are going up for Ron and I from you. I'm afraid to think of where we'd be with out you.

Bye for now, thanks for checking in!

Thursday, December 16, 2004 7:47 AM CST

Good morning!
(and a good morning it is!!)

Things have been very good around here lately. They started with the great news from the scans of Ron's abdomin area which I told you about in the last entry, and they just continue to get better!

On Tuesday morning we had a new MRI & PET scan of the brain. This was to determine if the whole brain radiation is working or not and to see if we needed to do something different, or continue with the 20 treatments or ?. We got to meet with Dr Ucken that afternoon to get the results! I love efficient doctors!

The lesion on his brain is considerably smaller than it was. He put both scans up for us to see. Then he said the question is whether it is "dead" or not. So he pulled out the PET scan for us to see. If there is cancer activity it shows as black on the PET scan. Ron's lesion was gray, just like the rest of his brain!!!! So there is no more cancer in his brain!!!!

What wonerful progress he is making!! I wish I could express to you how it feels to be living with a miracle! It is absolutely amazing, and there is only one place to send our thanks! Praise God! I thank Him for Dr Ucken and for using him as his instrument of Ron's healing! That he has the wisdom, compassion, and experience that he was ready for Ron when we came to him!! Dr Ucken will have a place in my heart for the rest of my life!

Sorry, I got sidetracked! So what does all this mean!? The dr wants Ron to complete the 20 treatments of radiation to continue to shrink what is there. (He has had 16 so far) Today Ron has chemo all day so he won't be having radiation done. He'll start again tomorrow. If he goes straight through, he'll be done on 12/22. Ron is going to ask if he can skip next week so the metal taste is gone for christmas and then finish the following week, but we'll see what they say.

He will not be doing the stereotactic radiosurgery (the radiation to just that spot). It is not needed at this time because it isn't cancerous anymore, and also just in case it ever comes back to the brain it will still be an option. We don't want to burn that bridge and have nothing to use if it happens down the road.

Ron has also had his lung drained since the last entry. That happened on Thursday the 9th. They let me stay in, just like I do for the abdomin taps. It was alot like them, except they go in through the back. On the upper left side of his back. They drained .5ml (1/2 a liter) out and sent it for testing. After they were done, Ron said it didn't hurt worse then when they do his stomach. But later after the drugs wore off...he was pretty sore. His whole muscle from his neck to his side was sore. My poor guy.

They also gave us the results from the fluid on Tuesday. The fluid did show signs of cancer. Depending on where the fluid came from will determine if it will bother us. Dr Ucken didn't look worried. I don't remember if I told you yet ( I say that alot don't I?!) but the fluid can come from 1 of two places. If either the lining around the lung or the rib gets irritated, it can produce fluid. This usually drains out the bottom into the abdomin. Since there is cancer there it can block it from draining. Or sometimes when there is ascites in the abdomin and there is a large amount of it for an extended time, some fluid can seep into the lining around the lung from the abdomin. That is what I believe it is from.

He was so bloated for so long, we were taking 5 liters off more than once a week!! And Ron has felt the pressure there since the beginning, it has been kind of constant. He thought the pressure was from the abdomin until they drained his lung. He said he could breathe soo much better. (You know how sometimes you don't know how much discomfort you are really feeling until it is gone? That is kind of what happened.) He was even a little dizzy shortly after the draining because there was so much more air going through. All this leads me to believe that the fluid was from the abdomin, in which case there is no surprise there is cancer in it. We already knew that. So we'll have to see if it reaccumulates or not. I'm not sure if that made sense or not...but I try.

Some more good news from the brain scan though, is that Ron immediately discontinued the anti-siezure medication and is tapering off the steroid!! He is very excited about that! The less drugs, the better!

We've got to leave in a few minutes to get him to chemo, so that's about it for now. We love you and thank you again.

Wednesday, December 8, 2004 7:22 PM CST

Praise the Lord for He is good!!! Although He owes us nothing, He has given us everything!! Not only His salvation but, healing as well and time together!

As you have probably guessed already, ( and I know alot of you have heard through the grapevine!) we received some very good news yesterday from Dr Ucken about Ron's new CT scans.

Dr Ucken told us that there are 3 things or levels they were looking for. First off they look to see if the cancer growth, or advancement has stopped. It is good if there are no new enlarged lymphnodes and things like that. --Ron has no further advanced cancer! We've stopped it in its tracks so far!

Secondly, they look to see if the ascites is less (the fluid cells with cancer in them in his abdominal cavity), --Ron's scans showed less ascites then there was when we started! Dr Ucken said that the radiologist's comment was that there was "marked improvement" (Which is very good!)

Finally, he said, best case sinario, they look to see if there is a decrease in the size of the tumors that were there. --Ron's tumors have shrunken!!!! Three strikes for the cancer!! Homerun for Ron!!!

He also told us that the blood clots were totally gone! The only negative thing that the scans showed was that there is some fluid built up around Ron's left lung. (he doesn't think that it is ascites fluid) He explained it that there is a lining on the outside of the lung, and another lining on the inside of the ribcage so when the lung moves, there is no friction. When either one gets irritated it can produce fluid. Normally this fluid would drain out the bottom of the lung into the abdomin area and leave the body. When there is cancer or ascites in the abdomin area sometimes it blocks the fluid from draining out of the lung. He told us it was about 1/3 filled. He didn't sound concerned at all.

He told us it will just need to be drained, then they'll run cultures and tests on the fluid of course. He said it is very similarly to the way his abdomin gets drained when Ron gets bloated. It is just in the lung area instead. When I asked if it was a common thing to drain there, Dr Ucken said it is more common to do that then it is to have the ascites. So that will be done tomorrow, followed by a chest xray to take a follow up look at it.

With all the news that we received yesterday, Dr Ucken said we can be happy with that! (That coming from a pessimist!) I just can't believe how blessed we are!

Ron had his 11th treatment of whole brain radiation today. We've scheduled new MRI & PET scans of his brain for the day of the 15th treatment. If the scans show that it is not making a difference, he will not finish the last 5, because they wouldn't make any more difference, so he'll stop to avoid brain necrosis (cell death, which is what we want with the cancer cells, just not the heathly ones).If the whole brain radiation didn't work, then we'd probably do the stereotactic radiosurgery (the radiation to just that spot of cancer)

If the new scans show the brain lesion is gone, I don't think he'll have to finish the last 5 either. Again, to protect the good cells. Ron is very anxious to be done with that. It gives him headaches and he said it smells like burnt flesh when he is in there. He doesn't like it at all.

Ron was also given permission to stop the TPN (nutrition) whenever he wants to. We just got another weeks worth of bags, so he may do it every other day or something like that to use them up. We'll have to see. He was feeling really full all the time with that and was kind of uncomfortable. Now he has to make sure to keep eating. They will leave the PIC line in for awhile to see if we need it again. So we just have to flush both lines with heperin every 12 hours to keep it from clotting.

Since the combination of chemo he is on seems to be working extremely well, he will stay on it probably until Jan or Feb, they'll do new scans again looking at the cancer and then probably change one of the drugs to a different one and then he'll get the chemo every 3 weeks instead of every 2 weeks.

Things have finally turned around. It was pretty scary and looking pretty bad there for awhile, but God is good and so far has answered our prayers! We pray that we've been through the worst of it! God is the Healer of all healers and in him is our trust!

One last thing before I go. Ron is going to look quite a bit different the next time any of you see him. His hair was starting to come out quite a bit. The last few mornings his pillow case has been almost completely covered with hair. If he pulled on a few hairs, they would pretty much come right out. So this morning, we took some pictures in front of our fireplace for a christmas card because we didn't know how much longer he'd have his hair. So tonight his mom came over to cut his hair shorter, I guess it just didn't look right, so he had her shave it off! He looks quite different! Still beautiful of course! It is soft and fuzzy!

Thank you again for all your efforts in helping us. Your support and love is unparalleled. We appreciate you and we love you!

Friday, December 3, 2004 7:03 PM CST

Hello everyone,

I can't believe it is December already. Where did the year go?

Anyway, just thought I'd tell you that Ron is doing great! He got the PIC line put in on Monday. It is a small tube coming out of the inside of his upper left arm that has basically 2 IV's coming out of it.

We started the TPN (nutrition)through it on Tuesday night. It runs for 12 hours a night, the 1st night they did 50%, then 75%, and last night was his first night getting 100% of the bag. The pump that is used, is the exact same pump Ron used this spring with his chemo when he had it in the fanny pack. The only difference is this one is in a back pack instead of a fanny pack, (the bag of TPN is quite a bit larger that his chemo bags) and we are pumping him full of nutrition instead of poison.

The first morning after the 50%, he woke up and said he felt like a million bucks! He had lots of energy, his hands weren't shaking anymore. He just felt wonderful! So we knew right away that this was going to be a good thing to help him keep on his weight. What is in 1 bag is all the nutrients you need for one day. People who can't eat at all, survive just on this. So now Ron gets to eat for fun basically! (He still eats plenty!! His appetite has been great!)

The TPN is something we do here at home, so the nurse came out 3 nights in a row to walk us through and teach us how to do it. Tonight will be our first night solo! She'll be here once a week or so to change the sterile dressing on the PIC, or if we need anything else.

Wednesday 12/1 Ron felt he may need to get drained. It was the first morning after the TPN and he didn't know if it was all that was pumped into him throughout the night or fluid. It turns out they could only get 600ml off. This was after 7 days! That is barely more than 1/2 of a liter! We were so excited! Now he knows that he just feels a little more full after getting the TPN. He said he is waiting at least 2 weeks before even trying to go in again!

We also took some new CT scans of his chest, abdomin, and pelvis, looking for the cancer on 12/1. This is our first comparison look at the cancer since we started the chemo. I think this will determine if they keep him on the same drugs, or take the next step up to a more toxic chemo. We meet with Dr Ucken on Tuesday 12/7 to discuss where we are at. We are convinced that he is getting better because he is feeling so good, the fluid is not building up near as fast as it was, his counts and labs all look good, and he is gaining his weight back. He was up to 150 again on his own before starting the TPN. As of yesterday he was 153.
Hopefully we don't have to put him on any more toxic stuff then he is now. But we'll do what we have to do!

Now we just need the scans to prove to us what we believe is happening!

Yesterday was chemo all day again. Those days really take a toll on him. He just feels cruddy, and gets a bad headache. By 3AM or so he was feeling better, we were up talking a little and he said he felt a bit better, and this morning he was feeling pretty good. I think he is still a bit tired, but not too bad. It usually just takes a couple days for him to be feeling good again.

Things are finally not so hectic. Next week (so far anyways!) He has radiation everyday, and only that appointment at Parker Hughes on Tuesday. I actually made it to work for half the day today!! I think I'll get to go in almost everyday next week!

Today was the first day I went somewhere without Ron in a month! It felt weird leaving him at home, and I missed him all day! It was good to see him when I got home!

Ron really has come along way in the last month. We both believe that if we hadn't found Dr Ucken, Ron would be on Hospice Care by now, if not already gone, who knows if North Memorial ever would have found the blood clot in his lung until it was too late. I don't remember if I mentioned before but 80% of people who get bloodclots in their lungs don't make it. We are very blessed to be in the hands that we are.

I think that is about it for now. Thank you again for your continued support, love, and prayers. Thank you again to both of our employers, Fargo and Hoffman. You have given us so much support and compassion. I don't think we could ever thank you for what you have done in contributing to our fight for Ron's life. Thank you and God bless all of you.

Sunday, November 28, 2004 8:43 AM CST

Good morning and Happy Thanksgiving to you!

I hope you all had a wonderful Thanksgiving day. Ours was nice and I know that we definately have very much to be thankful for. The Lord has been so good to us, I couldn't begin to count the things he has done.

Just wanted to let you all know how Ron is. He is actually doing very well. He had 4 days of radiation last week. He is getting headaches a little more frequently and his food is already tasting like metal again(just like this spring with radiation), but other than that is not having any other side effects. He's counted out the days on the calendar and it looks like he'll be done with radiation just before Christmas! What a great Christmas gift!!

Wednesday (11/24) Ron decided he wanted to go in to get drained. Not because he really felt bloated, but because it was Thanksgiving and then the weekend so it would be another five days before he could if he need to. So we went in, it had been 8 days since his last drain, and they could only get out 3/4 of a liter!!! That is the best yet!! I can't believe a few weeks ago he was going in every other day!

Things really have turned around tremendously in the last 4 weeks we've been seeing Dr Ucken. It really is hard for us to understand that North Memorial said there was no hope and nothing that we could do, when Parker Hughes is doing such an incredible job with Ron! We thank God for leading us to Parker Hughes when he did. One of the many things He has done for us.

As for this week, Ron is getting his PIC put in tomorrow as well as a check up at Parker to check his cancer counts. Tuesday I think we start the TPN (the nutrition stuff) Sounds like they'll be coming to the house to show us. And of course he has radiation every day this week. But that's going to be it! So it is nice to see that this week, finally things will slow down.

I think that is it for now. Again, I hope you had a great Thanksgiving and long weekend to relax. Until next time, All our love.

Monday, November 22, 2004 8:48 PM CST

Hello,
First I want to thank any and all of you who attended, donated, helped or participated in any way with Friday's event. I must say that you left us speechless. There are no words to describe the feeling of love and support you imprinted in our hearts. There were more people and more items donated then we would have ever dreamed.

The thought that all the people that streamed through that building, non-stop all night (estimated over 500)were there for the sole purpose of supporting and loving Ron and I, is completely overwhelming. I've never seen anything like that before. Saturday on our way home, we were still in unbelief at the turn out Friday and Ron asked me "how did we get so blessed?". The only thing that I could think of to say was that God loves him! Thank you all for showing us God's love through you.

We found it as hard to visit with all of you Friday, as it was on our wedding night not too long ago! It was wonderful to see you there though. Some of you it had been WAY too long since our last meeting. Here I am again, at a lack of appropriate words to express out gratitude, but THANK YOU, and we LOVE YOU!

And I suppose you want to know how Ron is doing, Huh?!

Let's see if I can get you all up to date. I know it has been almost a week since I've been in here....sorry.

Last week, same as the two weeks prior, we spent every single day going in to Parker Hughes. Late last week it was determined that he was still a little anemic. (when his hemoglobin count is under 13)His was 11.7 and then 11.29. So he'll be given a shot every week or every other week to boost that until it is back up to 13 where it should be.

Most of the rest of Ron's "markers" are looking very good. His cancer counts are up from where they were(something the cancer produces and puts in the blood that they can measure). The pneumonia is gone, and the fluid is not building up as fast. He was last drained on 11/16 only 2 liters and he isn't feeling that he needs to go in yet!

His weight is fluctuating though. He was down to 141 early last week and by Friday was back to 147-ish. (and then ate 4 plates of spaghetti!!!) But this morning he was 138.5 and by this afternoon back to 145. (Unless our scale is that much off from the doctors.) So Dr Ucken is still checking into getting a PIC put in. (tentatively set for Monday 11/29) I don't remember if I mentioned this earlier. It is like an IV put in his arm, but it is fed all the way up the arm and into the main artery of his heart. (Much like the port he had this spring, except it's in his arm versus he chest) It will be there so we can give him nutrition through it at home to help him maintain and gain his weight. It won't be used for chemo like the port was. The place the nutrition comes from will apparently come out to the house and teach me how to do it so he'll be getting that at home. (Ironically, the use of a regular IV won't work because the protein, sugars and stuff would burn. But chemo can go through an IV. I just found that odd)

As far as taking care of the cancer that is in his brain, the plan has changed a little bit in the last few days. Wednesday we had him all scheduled to do only stereo-tactic radiosurgery. It is radiation to one spot on the brain. It would be a 1 day thing, but all day long. The procedure itself would only take 1/2 hour. But planning it takes all day, 4-5 hours plus scans. The earliest we could schedule it for was 12/6.

Once we got to Parker Hughes on Thursday for Ron's 8 hour day of chemo, we told Dr Ucken our schedule and he didn't like the fact that we were waiting 2 weeks. He told us that waiting that long to do the stereo tactic radiation would do more harm than doing the whole brain radiation and starting right away. So we talk about that because Ron and I weren't comfortable with that one yet. He told us that they'd use a very low dosage. He said he felt very strongly about it, to trust him on this one and that it would be ok. He has done more for us then anyone else has and we trust him completely so we are going ahead with that. We know we have to do whatever it takes to get rid of that.

We actually started the radiation today. After we had talked with the doctor and all, it only took about 10 seconds on each side of his head. It will most likely be 20 treatments. So we'll be in there every day (except Thanksgiving) for the next few weeks. Ron said it was alot like the radiation he had on his esophagus this spring.

We'll still keep our appointment for the stereotactic radioation as well. Studies show that the whole brain radiation alone has around a 50% success rate, where if you do the stereotactic with it, it boosts it up to 85% success rate. All of these treatments are taking place at Fairview Southdale. (which is a little drive from our place unfortunately!)

But we've finally graduated from going to Parker Hughes every single day!! From now on we'll only go there if Ron's been drained to get the Albumin put in, on chemo days or for an occasional check up on him! That will finally give Ron some down time to relax and give his body a chance to heal! (Of course we stopped going there right in time to start going to Southdale every day for the next 20 days! but at least there it will be 20 minutes maximum instead of a minimum of 2 hours!)

One last piece of good news we received today is that the scans they took Friday show the brain cancer has slightly decreased in size since his last scan!!! So apparently the Temador (chemo pill) and the steroid or something is working already!!

As you can see, most things are looking very good! We are very happy to be getting good results on these different markers that they are watching! We know that we still have a long ways to go and we pray for continued strength every day. We know that we are not alone in this fight and that is what keeps us going. We know we are being carried. There is only one set of footprints on our beach right now! Thank God that he is carrying both of us.

Until next time, we love you.

Tuesday, November 16, 2004 8:24 PM CST

First I want to express our gratitude to all of you who have been supporting us on this long road and also to those of you who are newcomers to our site and joining us in this fight for Ron. Some of you praying for Ron right now we have never even met. Your prayers and support for us in every way are so very much appreciated. I was asked to take this time to reacquaint you with Ron and me and this journey that we've taken in the last ten months. I'll try to keep it to the "reader's digest version" and if you want more details you can glance over the past journal entries.

Ron and I met at work in 1997, we were friends and coworkers for 3 and 1/2 years before any relationship took form. But once it did, we fell more deeply in love than I ever thought possible. Ron proposed after 7 months and we were married in August of 2002.

We had our share of "excitement" even before our wedding day came. Ron was hit in the forehead with a softball and crushed the front sinus wall and cracked the back wall (which protects the brain). He had surgery to reconstruct it 3 weeks and 1 day before we got married. So we learned early on to appreciate every day we have with each other and thank God for every minute.

We bought our first home together in September of 2003 and planned to have a family as soon as possible. It was that following February that Ron was having trouble swallowing food. After about 3 weeks or so he went in to get it checked out. It took a week of testing before we finally got down to the bottom of what was causing the trouble. It was a 2 inch tumor in his esophagus, and yes it was cancerous. February 20th is a day that I will always remember. It is amazing how fast your life, priorities and everything changes after hearing news like that.

Our families and friends immediately surrounded us with love and encouragement. We were frightened but we both had a strong faith and feeling that everything was going to work out. We found peace in our faith that God had us in His hands and it would be His will that was going unfold before us.

We continued on with testing, second opinions, and eliminating options as more information proved them not to suit our situation. It turned out that there was cancer on some lymph nodes as well as the original tumor. Within a few weeks we had our options narrowed down to chemotherapy and radiation. Ron received 2 kinds of chemo 5 days a week, 24 hours a day for 5 weeks. Over that same time frame he had to go into the hospital 5 days a week for radiation to the esophagus and also the lymph nodes.

Ron and I believe in the body that God gave us and its ability to heal itself if it has the "right fuel". So while we were going through the chemo and radiation Ron was also consuming a lot of natural things to boost his immune system and support his body while we were poisoning it with the chemo. To name a few, juicing, fresh fruits and veggies, and glyconutrients mostly is what he took. That along with all the prayers and the incredibly positive attitude that Ron has always had we believe got him through all of that far better than his doctors had suspected.

They said he'd be sick, his blood counts and labs would go down, he'd lose his hair, and this would possibly leave him sterile. Since we don't have kids yet that was something we took precautions against. But every week that we went in to meet with his doctors you could see the amazement on their faces. When we asked if he'd loose his hair, even in the 4th and 5th week, they'd say "he should".

Although he was nauseas quite a bit and was very tired and felt run down, he didn't get "sick" until the very last day of radiation, his counts were very impressive all the way through and he NEVER lost his hair. The doctors just couldn't believe he was responding so well.

So after what we thought would be the worst 5 weeks of our lives, we waited to see if it worked. In May we got the news that we'd been praying to hear. They couldn't see any cancer left. It may be microscopic and come back but they didn't see any! We were ecstatic beyond words! The Lord had carried us through and sustained Ron's body and healed him! What a gift we were given ... Life!

We went on with our lives, enjoyed the summer on our boat, took a vacation and once again started planning to have those kids that we want soo badly. We were hoping by the end of the year to have one on the way.

In August we went in for another check up and again he was given a clean bill of health. He was scheduled for his next 3 month check up for the 1st week in November.

We didn't quite make it that far. In early October Ron was feeling bloated. We thought it was his bowels, or gas or something, but nothing we did helped. He was just full all the time. After 3 weeks of trying to fix it one Saturday afternoon (October 9th) Ron told me he just couldn't take it anymore. His stomach was rock hard, like a balloon ready to explode. We went into Urgent care and they sent us to the Emergency Room. All the labs and tests came in normal, so they did an ultrasound on him. There was fluid in his abdominal cavity. They were able to extract enough of the fluid to send it in for testing and we scheduled to see Ron's Oncologist early the next week.

They ran more tests and scans and then were able to drain the fluid out using a catheter to make him more comfortable. They took out 5 liters of fluid, Ron lost 11 pounds that day. He had lost around 20 pounds in the last 3 weeks from not being able to eat because he was soo uncomfortable. We waited a week for all the results to come in.

On October 18th, the bomb shell dropped, nothing prepares you to ever hear what we heard. The cancer was back, there is no cure, chemo may buy you a couple months, but it could be a matter of only 6 months. The cancer is in the fluid in his abdomen (called ascites). We were told that the cancer produces this fluid build up and Ron would continually need to be drained to stay comfortable.

There is no way to describe the emotions, thoughts and feelings that flood over you at that moment. They couldn't be talking about this young man, only 36 years old, who is so completely loved by anyone who knows him. Who has been such a courageous, inspiration to so many in the trials he's already bared this year. But they were talking about my husband, the man that I plan to spend the next 80 years with. So now we had to figure out again, how we were going to defeat this awful, horrible thing called cancer for the 2nd time in one long year.

Our current oncologists didn't offer us any solutions other than an oral chemo pill that would "buy us a couple of months", and to drain him whenever need be to keep him comfortable. We then found out that Ron had gotten a blood clot in his right leg. I had to learn how to give him shots so I could give him blood thinner every morning. We were also going in twice a week to get the fluid drained and they were taking out around 5 liters every time we went in.

Since we are talking about his very life we had to make sure we check out every viable option there is. So we can rest assured and know that we are doing the right thing. We were not going to just give up without a fight. So we went shopping for some hopes elsewhere. We planned on winning this no matter what, on our own if need be. We truly believe that God can heal him, even if the doctors don't feel that it is possible.

We went and got a 2nd and 3rd opinion. No matter how many times you hear that horrible news, it doesn't get any easier to hear. One place that we went, we weren't given promises, but we were given some hope back. Finally, someone willing to fight this fight with us and go to bat for us. We are now working with Parker Hughes Cancer Center. The doctors and staff are incredibly thorough, intelligent, and genuine.

In the testing that they did there, we also found that Ron had pneumonia, he was dehydrated, his heart rate was way to fast and he also had a blood clot in his lung. We also found out that the cancer is also in his chest, and a 1.7 cm lesion on his brain. But here we weren't just "written off". He was providing us with a plan on how we might be able to win. He said we lost a lot of ground and it may be too late because he should have been given at least 6 months of treatment the first time this spring, instead of the 5 weeks that we had. He told us most people at this stage don't win, but it is possible. He said it is not curable, but treatable if we can get it under control.

So we take each day as it comes and deal with what it brings us. We have so many good things happening. Things have really turned around since we changed where Ron is getting his care.

We've recently found out that the blood clots are almost totally gone, but Ron's sodium level is a little low so he is now on anti-seizure medicine. The rest of his counts are getting pretty good again, the pneumonia is almost gone and the fluid build up seems to be slowing down. It got to the point that we were taking out 2 liters every 2 days. Just this morning we went in for the first time in 6 days and only took out 2 liters, so we are hoping things are turning around. We are meeting this week for a consultation with the doctor who will do the radiation on his brain. We are also going to discuss getting a pic or central line put in to get more nutrients in him through an IV. Ron has lost 30 pounds in the last 2 months, since he was first feeling bloated. So we have to get his weight back up and sustain that as well.

We know this is going to be a very long road, but with God's help, our love for each other and all the support from our friends and family, we can make it out the other side and have an incredible story of faith, strength and love to tell our children when we are finally blest with them.


Our family and friends are planning a benefit on Ron's behalf to help us with the extra costs, bills and living expenses through all of this. I was asked to include this information on here. It will be a spaghetti dinner/silent auction/bake sale this coming Friday, November 19th from 4-9pm. It will be held at the Chanhassen Legion Post 580 located at 290 Lake Drive East, Chanhassen, MN. For more information you can contact Ron's twin sister, Rhonda at 952-934-2089. Or donations can be sent to Ron and Kathy Rice at 26224 150th St. Zimmerman, MN 55398.


I continually find words to be inadequate to express our gratitude to each of you for being there for us in every way imaginable. It is easy to forget that there are good people out there. To watch the news and listen to stories is mostly depressing. But Ron and I have been so blessed to see first hand the generosity and love that is out there, in places you never would dream to find it. The Lord has blessed us and we'll continue to trust Him and thank you all for the love that you have shown us.

Friday, November 12, 2004 5:23 PM CST

Hello!

We have mostly good news to share today!! As I mentioned on Wednesday, Ron had a chest CT scan done Thursday morning to check on the blood clots in his lungs.

We had a lot of errands we planned on getting done after leaving Parker because we were only supposed to be there for a couple of hours that morning. Since they knew we wanted to get out of there, they let us go and Dr Ucken called us when the results came in. We had just finished lunch when we got the call...The blood clots are almost totally gone!! Hurray! We've decided that this is going to be the beginning of a long line of good news to come! We were very excited to hear that they are looking so much better. So come Wednesday of next week, Ron gets to drop to only one shot in the belly a day of blood thinner!!! He is VERY excited about that!

Thank the Lord! Now hopefully the bruising on his belly will go away. There is a pretty good size area on one side of his belly that is a deep, deep, purple from all the shots, and draining, and poking. (because the shots are of blood thinner which leads to bleeding under the skin and bruising. ) He also has red spots in quite a few places from the puncture holes. His poor belly :( .

I don't remember if I told you before or not this little tidbit. The color of the fluid coming out of his abdomin is getting redder and redder everytime we do it, and we can see more particles floating around in the fluid on the ultrasound screen. They told us it is because of the blood thinner, it causes some internal bleeding and the blood has to go somewhere, so it settles there in the fluid in the bottom of his abdomin.

The other piece of information Dr Ucken gave us on that phone call was that Ron's sodium level was low. Which I guess is caused by the cancer in the brain. So now Ron has to drink less fluids and eat more sodium. When you are low in soduim it puts you at risk to have seizures, so the dr perscribed an anti-seizure medicine. He had us go back that afternoon to pick it up so he could start right away.

Somedays it seems if it isn't one thing to worry about it is another. But we are soo thankful that Dr Ucken is so incredibly thorough! What a wonderful doctor he is, and he is very proactive as well, instead of waiting for something to happen and then trying to fix it.

So Thursday was filled with great news and a little not so good news, but then today came!

This morning Ron wasn't feeling as uncomfortable from the fluid as he usually does when we go to get drained, but he was scheduled for a tap, and then to have the fluid replaced at Parker. So we decided to go in and at least do the ultrasound to see what we would find. There was some fluid in there, a little more than when we left on Wed., but not enough to drain him. The doctor in Princeton figured we'd probably only get .5 to 1 liter out, and we decided that it just wasn't enough to make it worth Ron getting poked! So we are going to try to hold off until Monday. If he gets uncomfortable and we have to go in over the weekend, it sounds like an ER doctor probably could do it. But we are hoping that the fluid is slowing and we can make it until Monday!!!

That also meant we didn't have to be at Parker as long either today! YES!!! You see, on days that Ron is drained we get 2 "big bottles" (1 hour each) and 2 "little bottles" (.5 hour each) and yes those are the technical names for them!!!, but on days that he is not drained he only gets 2 "little bottles"! So we go from at least a 4 hour day to closer to a 2 hour day! Which was nice today, we were both tired from this weeks busy schedule!

They also did Ron's labs again today to check all his levels. Again we didn't want to wait for the results so Dr. Ucken called us when they came in. All good! The liver function keeps getting better, the sodium level is back in the normal range, and everything else looks good too!! Praise God again! It is so fun to see the doctor get excited over labs and results and say, "I like it, I like it, I like it!!" What great hands we are in!

This week we also met with a dear friend of ours to get all the paper work done to get the house on the market. It should be on the MLS tonight I think! So we are praying that it sells FAST!

The plans for this weekend are to start sorting out what we are not keeping and start packing! Then come Monday, we are scheduled for Ron to get drained, and then off to Parker again. They'll be giving him his fluids, and doing new labs again to watch his counts! ( Dr Ucken thinks that Ron not getting drained today helped his counts because they didn't take out the good stuff too. So we'll see how they are on Monday after the tap.)

That's it for now I think. It sounds like quite a few of you are going to be at the spaghetti dinner on Friday night, we are looking forward to seeing you and getting to visit with you all in person! Have a great weekend!

Wednesday, November 10, 2004 8:22 PM CST

Hello again,

I suppose you are all wanting to know what we found out at Mayo this past Monday. Sorry again to keep you waiting, (somedays it is hard to find any extra time.) We were done at the Mayo Clinic by 10:30 in the morning on Monday. They really didn't have anything new to tell us. More of the same depressing info just from a different doctor.

They told us that since we've just started a new chemo regiment, they will not recommend any changes because what we are doing now may work. ( kind of what we expected )He told us the fact that different doctors may use different drugs pretty much means that there is no "magical" combination that cures this kind of cancer. If there is a known cure everyone pretty much knows it and uses the same thing. They did tell us again that there is no cure for esophageal cancer that has metastisized. Some manage to control it for who knows how long, but there is no cure.

Again, they didn't tell us anything new, but you'd think you'd get used to hearing this stuff....let me tell you...it doesn't get easier to hear the more often you hear it. So we were all pretty quiet on the way home. The last thing they did tell us though was that they are not there to take away our hope, because there are people all over this world who live a whole lot longer than anyone ever thought possible.

Of course we know that God is better then any of these doctors are! and that is where our trust is! We are in the hands of the Almighty and with Him ALL things are possible! (Even a cure!)

Ron was also pretty uncomfortable on Monday. Very bloated again. So instead of waiting for our appointment to have him drained on Tuesday afternoon, I called as we left Rochester (at 10:50am)to see if they could get us in that day. She checked and said ya, if you come in at 12:30 we can fit you. I told her there is no way we could make it we were just heading up and she said we'd have to wait until Tuesday then. So we were bummed Ron had to be uncomfortable for another day, but Tom was driving and he said "I can make it!" Most of us didn't realized until we were well into the cities that he really was still trying to make it! I think we grew wings! We made it to Maple Grove by 12:25 so I called to tell them where we were and we'd make it to Princeton by about 12:45 and could they still fit us in. She said get there as soon as we could and they'd do it!! So thanks to Tom's magnificant effort Ron got drained that day! (We made it from Rochester to Princeton in 2 hours!!! I'm glad God was with us on that trip! No tickets or trouble! Thanks Tom!)None of us could believe we actually made it! They took 2.2 liters off on Monday.

This week has been long days at Parker Hughes since then. Whenever Ron gets drained, we go into Parker and they replace some of the protein and electrolights that get taken out to keep his health up. Our short days there are still 4 hours usually. So that takes up alot of time. It seems the days just fly by. Somedays it is hard to get anything done.

Today we went back in to have him drained. He just seems to get uncomfortable too fast, so we decided we were going to ask the doctors today about getting a catheder put in and left in so we could just drain him at home anytime he needed it instead of getting poked every other day. When we got to Princeton today to get drained only 1.5 liters came out. Even though we had planned to take more, thats all that came out. (hopefully a good sign!) And we asked the doctor what he thought about leaving a catheder in. He said he has seen it done in similar circumstances and said they could do it there if our oncologist is ok with it.

So we asked Dr Ucken what he thought and he explained to us that since Ron is on an active Chemo session it is not a good idea. The chemo leaves you prone to infection and if there is a foreign object in your body that is the first place one would set in, and there were a couple other good reasons as well. He said if there comes a point that we stop the treatment and decide we don't want to go to the clinic that often we may want to consider that option, but not now.

Then he told us about another patient who had ascites (the fluid build up in the abdomen) and he went through treatment, and his ascites just all the sudden dried up! and it has been for 2 years. His scans still show there is cancer in there, but it is pretty much under control! So we were happy to hear of things like this happening! He said it may get to the point that he only needs to be drained once a month and then every other month, and so on. So we are going to continue what we are doing, go in to get tapped (drained) whenever he needs to and see how things go. He is scheduled for another tap on Friday morning.

Ron is getting another ct scan of his chest done tomorrow morning. Dr Ucken says as soon as we see improvements in the blood clot, he is going to lessen the amount of blood thinner we're doing. Back to one shot a day would be awesome! So hopefully it is all looking good. We think it should be, because his leg is not swollen any more and he is walking normal, so it should be affecting the clot in his lung the same we would presume.

As I mentioned before, we are going to sell our house. It looks like by this Friday (11/12) it should be on the market! God willing, we are hoping it will sell fast, but time will tell.

The benefit that is being planned is coming up fast too, next week already! I can't believe it is also going to be Thanksgiving the week after that! There are still contact numbers and a little info about the benefit posted in the photo albumn if anyone has questions. Thank you all so much for your help with all this stuff.

I think that is about all I know for now. We have another early day tomorrow so I'm going to sign off and get to bed! Thanks again for all your prayers and support I don't know where we'd be without all of you!

Sunday, November 7, 2004 10:40 AM CST

Hi everyone,

Things are going pretty good here. Ron had his first long day of chemo on Thursday. He was hooked up to an IV for I think it turned out to be 8 hours. It was not 8 hours of straight chemo, they start with pre-meds (which we never had the first time through with chemo). The whole approach is different at Parker Hughes. They try to head off any side effects before they happen instead of waiting until you feel miserable. So before they started the actual chemo, they gave him things like anti-nausea medicine to be proactive. Then he had the chemo, followed by a flush with saline (3 hours I think).

Ron was feeling mostly good the whole day but it kicked his butt a little by the days end. He felt crummy for a better part of the evening, but by bedtime he was feeling ok again. Every day since then he just gets better little by little. Some of the side effects he's felt is a bit of nausea and headaches.

Ron is on 2 chemo pills and then the IV, but last night was the last one of the "brain chemo pill" for the next three weeks. Also he has a week and a half of the other chemo pill and then he'll be off that one for 2 weeks. (on for 2, off for 2 with that one). And the IV chemo is going to be every other Thursday. So we are hoping he'll have enough time off that his body can recover a little and he can feel pretty good. Now we just wait and pray that the cancer reacts to the chemo. Just think, the cancer could be dying RIGHT NOW! It feels good to be finally fighting it! Too bad Ron has to take so many pills though and have all this junk put in his body.

We are leaving for the Mayo clinic tonight for our last opinion. Our appointment is at 7 am tomorrow morning. Then hopefully we can find some kind of routine or normal around here.

I think that is it for today...it's about time we had a short journal entry isn't it!? Thanks for the continued prayers and support and I'll let you know how it goes at Mayo!

We love you.
Ron and Kathy

Wednesday, November 3, 2004 9:18 PM CST

Hello,
I hope this is as good as the one I just wrote. I was on my last paragraph proofreading when I got kicked off line and lost it all....so I'm starting over again...ARRGGHH!

I’m sorry you all had to wait a few days for this update, we’ve had another very busy couple of days. I know there are quite a few of you very anxious to see how Monday went.

Monday we were at Parker Hughes from 11am to around 7pm. Ron was in getting tests done all day. Everything from echocardiogram, EKG, pet scan, ct scan, chest xray, brain scan, you name it and he did it. At least it was the most comfortable waiting room ever--big plush leather couches! Then we waited for Dr Ucken to get the results.

We did get some more news that was a little disturbing. I know I told you about the blood clot in Ron's leg, but now we know there are also a couple clots in his lungs as well. So the discussion was rather to put him in the hospital on a heperin drip or increase the dosage of the lovenox shots he is getting at home and go in if it gets worse. We opted to go home and as it turns out we couldn't have done the heperin drip anyway because we also found that there is a small 1.5cm spot of cancer on Ron's brain (on the left frontal lobe) and the heperin could cause bleeding there so it wasn't an option anymore. It is about the size of the tip of your finger. (So we went home, but I know I didn't sleep well, for fear he would stop breathing on me. Every time I woke up I had to make sure I heard him or saw his chest move or something before I could go back to sleep. but we made it!)

We got to see where the cancer was active. It is spread quite a bit but only in small amounts, there are no big spots, and they are not yet attacking any major organs either. It is little spots in the chest, abdomin, lymphnodes, possible spots on the liver and lung. Both those have a spot but the doctor doesn't think they are cancerous, but it is possible.

So what does all this mean right? Well, first of all we need to treat the blood clots, so instead of 2-60mg shots aday, he now gets 1-100mg and 1-60mg. His legs are getting better every day and he is breathing better so this stuff is working. He also had a new ct scan done today to check on his lungs and the docter was happy that they haven't changed, moved or gotten worse. His heart rate was still a little high on Monday but is normal today the doctor was also very pleased about that. Ron told him it was all in his head and he was ready to go... the doctor just smiled.. he liked Ron's attitude!

The echocardiogram was done to get a baseline reading on Ron's heart. Chemo is very hard on the heart muscle and they will be watching this extremely closely. As of now his heart looks and sounds normal ( if anyone could accuse Ron of being normal that is!) Although, kind of interesting is the fact that his heart is physically located higher in his chest that normal because of all the fluid in his belly. I guess you could say it is floating. ( I guess he isn't normal after all!)

As for the cancer on the brain Ron started on some steroids and a chemo pill that can cross the blood/brain barrier yesterday. The chemo gave him a slight headache but that was gone this morning and he is feeling pretty good. The steroids make it hard for him to sleep so we also got him a sleeping pill today. ( we've got a regular old pharmacy here!) We will also be referred to an excellent doctor who does stereotactic radio-something or other. It is a type of laser surgery on the brain, non-invasive. So we'll also be finding out it he is a candidate for that. I really don't know very much more on that yet.

Dr Ucken thought it possible that Ron has pneumonia, so he is on antibiotics for that. Even though he doesn't think that Ron has it, he HAS to treat him as if he does because once the chemo starts, if there were any there, it would flare right up and we can't afford for him to get that sick.

We will be starting some more chemo via an IV tomorrow. Along with another Chemo pill to deal with the rest of the cancer. It will be one day every two weeks instead of 5 days straight on the fanny pack like he did before. It will be a really long day is all. But we'll bring movies and just hang out.

A couple of interesting tidbits that we've found out over the last few days, one is that we were told they should never take out more than 2 liters of fluid at one time out of his belly. It could put him in shock, collapse a lung or affect the blood clots. (So glad the other hospitals were draining him dry every time.) So Ron got drained yesterday and told them to stop after 2 liters. He'll be doing that every Tuesday and Friday until the fluid slows down.

Which is another thing. We asked at North if there was anything he could take to slow down the fluid build up and they said no. Parker Hughes has him on 3 different things that help with that...amazing.

We are still going to the Mayo clinic on Monday the 8th for our last opinion.

We did get some amazing news on Monday as well. we filled out a request form on Friday to waive some of the out of pocket costs that we would have. We got the letter back on Monday saying that all costs over $100 for 2004, and $100 for 2005 except a once a month co-pay of $20 and all pharmacy co-pays are going to be WAIVED! We had to read and re-read that letter to make sure of what it said! (no, I didn't forget any zeros!) The doctor has even waived about $200 of pharmacy co-pays for us as well so far. (we took home about $4000 worth of drugs yesterday alone) What a blessing the Lord has bestowed upon us! It left us all speechless, what a gift we have just received!!! The generousity just blew us away!

The Lord is soo good to us, and he never lets us down. He carries us still especially in this time that it would be so easy to despair. But there is always hope, we will win this fight because "I can do all things through Christ who strengthens me."

Ron still has an impeccable attitude! what a blessing he is. I don't know anyone with as much determination, strength and persistance as he does. He never ceases to amaze me. What an incredible man he is. He told me again the other day that he fully intends to watch his kids grow up, so the plan is to first get this cancer business behind us and then have kids and live happily ever after!!

We have also decided to sell our house ( I know we've changed our minds alot on this since this summer) But since Ron is going on short term disability at least until his blood clots are under control, and we'll be doing alot of traveling to the doctor and back. We need to get rid of as much financial burden as possible. Neither one of us wants to worry about more than we need to. We know this will be a long road and he will probably be on chemo for a very long time. So we plan to move back into an apartment until we have this battle behind us. We just have to keep all our focus on that, moving will also bring us closer to everything as well. We'll be looking in the Rogers, Maple Grove area. Possibly even into the last apartments in Rogers we lived in last year. We'll see where we end up!

I truly hope I remembered everything I had in the first version of this journal entry. It was hard enough to remember it once! But to try it twice! I guess I'll have to add it to the next one if I remember anything else!

Thank you again, all of you for loving us and the support you are surrounding us with. We love you and thank God for you every day.

Sunday, October 31, 2004 2:45 PM CST

Hello,
I hope you are all having a great weekend. I've finally got a minute to update you on Ron. I'm learning that some days just aren't long enough to get everything done, while other days are way too long! Anyway, I've got a lot of info to share with you today, I'll try to explain it best I can, while keeping it as short as I can.It may be another long one.

Like I said earlier, Ron was really uncomfortable and bloated by the end of the week. He went in for his paracenthisis(to get drained) on Friday morning. They drained another 5.3 liters of fluid and lost another 11 lbs. He was down to 146lbs on Friday(He has since gained a few pounds back!Good job honey!) Just for reference, he weighed 172 before any of this started about 6 weeks ago. So he is definitely losing weight too fast. One way to help him keep up the weight we thought was to get him drained twice a week, so he doesn't get so full that he can't eat or sleep for 2 days. He is now scheduled to be drained this Wednesday and then from here on out as long as the fluid keeps up, it will be twice a week.

As you may or may not have known, we had an appointment with the head doctor at the Parker Hughes Cancer Center on Friday afternoon. This doctor was very direct, very knowledgable, and kind as well. We were extremely impressed by him. It was another hard evening though. Some of what he told us was not what we wanted to hear, but he did give us more hope than we got from our previous doctors. We sort of felt like we had been sideswiped by a semi. It seems he disagreed with everything that North Memorial has had us do up to this point.

Even though we didn't like everything he had to say, we decided it was better to find out now then another few months down the road. He told us that cancer in a young person is automatically an aggressive cancer, and being such that he was diagnost as a stage IV cancer at the beginning he can't understand why we did 5 weeks only of treatment. He said the standard treatment for that stage cancer is minimum of 6 months! He also didn't know why we did radiation at all. He said you ONLY do radiation if it is to be followed by surgically removing the area afterwards. He said there are alot of side effects from radiation and it doesn't cure anything so it just isn't worth doing unless the problem area is being removed. He said he would have started with different drugs, he wouldn't have had the pump all week long, and he would not have stopped while they were ahead. He said we have infact lost a lot of ground that we can't get back and now it may be too late. Although, he did say that it was treatable, not curable, but treatable. So he did give us some hope.

While the doctor was checking Ron's vitals, he found that his heart beat was VERY high. (140 and I guess normal should be around 100. I asked if it could be from the news we just had and stress, he said that kind of high would be like 120) He immediately had 4 nurses in there to get him on the EKG to check his heart, they gave him an IV to get him some fluids (he was also dehydrated-not a surprise since he hadn't eaten in 2 days.) and some other things. They moved so fast it was extremely effecient. The doctor also heard less air in his right lung than normal. Said it was either pnuemonia, or maybe damage from the radiation(which the last ct scan at North did show a small spot of damage on his lung) We'll know more after the tests on Monday. He also said his liver was working 1.5 times more than it should and he didn't like that, but again we'll know everything after Monday it sounds like.

He told us the Albumnin he was giving him in the IV will keep the fluid from accumulating as much, I didn't fully understand how, but they plan to give him more on Monday I think. They also perscribed some fish oil extract, which I guess will help Ron maintain his weight. ( we asked North for both of these kind of things and they didn't have any suggestions for us.) On Monday they are also going to get him some lemon drops that are donated to them by somebody, but they are 500 calories each. So these will also help him keep up his weight!

We ended up not leaving Parker Hughes until 7:00pm on Friday because Ron was getting all those fluids.

The doctor said that as it stands now, if we do nothing, we are talking months left, not years. If the cancer is in or gets in the liver or lungs, we are talking maybe less. Ron then told me that dying is not in he dictionary, and he told me everything would be fine! I kind of think this is the reason God made Ron so stubborn his whole life. Just to carry him through this time when it may be so easy to just give up. It may be one of the best things we've got going for us. I thank God everyday for Ron's positive attitude, his faith and reliance on God and his strength. Thank God that Ron is stubborn!

We are going in tomorrow (Monday, Nov 1st) for an echo, pet scan and ct scan. Then we will immediately talk with the docter again. Apparently he doesn't wait for things, he gets results like right now. So as soon as we are done with the scan, we'll be talking to him. (Which is the way it should be, none of this waiting a week crap!)

We are still keeping our appointment on Nov 8th at Mayo clinic, to get a 3rd opinion. Then we'll have some big decisions to make.

As of now Ron is feeling pretty good, he is eating and sleeping better. His right leg is still really bothering him from the blood clot. He still has a hard time walking and moving it. The swelling has gone down a little over the last 2 days, but it remains noticably bigger than the other. Oh, yes! and maybe you are wondering what ever happened with that talk about the shots?!

I'm now the nurse in our household. They had me give the shot while the nurse watched on Thursday. I didn't pass out! I felt a little flush afterwards but it went pretty good. He even said it hurt less than when the real nurse did it the day before. Then on Friday the nurse at Parker Hughes watched me give him my 2nd shot. Saturday was my first day "on my own".

So now I give him 2 shots a day in his belly. One in the morning and one at night. I guess we all do what we have to do when the need arises. God gives us what we need to get through everything! Giving shots was the last thing I'd ever imagined myself doing, but he is a pretty good patient! I might even have to get some stickers to give to him when he is so good!

Lastly, we just want to thank all of you from the bottom of our hearts that helped, donated or participated in the walk-a-thon on Saturday. It is truly overwhelming to receive so much support and love. It was great to see you and visit with those of you who were there. Even though it was cold and rainy! What you generously raised for us has already gotten us out of a bind with some of the costs that we have incured. I know that "thank you" is totally inadequate, but that is the only way I know to say it. Please know that we love you and always will.

One last thing, just to let you know that I posted some information about the benefit and contact numbers in the photo album under the 2 pictures, if anyone has questions about it.

I think that about covers it for now, sorry again that it is so long. Something tells me there is lots more to come too! We just take one day at a time around here and let God guide us and give us strength. We know that it is Him holding us up at this time in our lives. Thank you for the continued prayers you are all sending up for Ron. We know that even if the doctors can't "cure" him, God can. He is the healer and we will continue to look to Him each day.

All our love,
Ron & Kathy

Wednesday, October 27, 2004 3:57 PM CDT

Hello everyone,

I hope you are all doing well. We are doing pretty good, all things considered. Just taking one day at a time and facing what ever the day may hold for us. We know that God is in control and trust in that. I can't begin to tell you how honored we feel to be surrounded and supported by so many wonderful people. Each of you is an Angel that God has sent to make our way a little more bearable. So, thank you for that.

This week has been going pretty good so far. Ron's stomach really isn't bothering him to badly, he said it is a little full but not bloated yet. So he is comfortable for now.

His leg has actually been bothering him more than anything lately. It started out a week ago. He hurt his foot and then his calve muscle was sore from trying not to walk on his foot. It was finaly getting better day by day and then last Friday his foot hurt worse. The doctor told us that Ron was at risk to get blood clots in his calves. So Friday afternoon Ron's dad took him in to make sure it wasn't a blood clot. They did an altrasound and said it was a popped blood vessel.

He was then feeling pretty good up until last night and this morning. He could hardly bend his knee because his right calf was so swollen. So instead of going to work we went back to the hospital to have it checked out. I got to push him around in a wheelchair all morning ( I didn't even run him into any doors or walls!). Up in radiology they did another altrasound. This time they did find blood clots in his thigh. So we went back down to the cancer center where they gave him a shot in his abdomin with a tiny needle of Lovenox. It is a blood thinner.

He will need to get this shot everyday for awhile(except the days he gets his abdomin drained). It even sounds like if my insurance approves it, I will need to learn how to administer the shot so I can be the one to give it to him instead of going in to the hospital everyday. (If any of you know my track record in watching medical procedures, you'll know how excited I am for that!(I have a history of passing out, for those of you who don't know! So we'll have to work on that.))I did watch her today and it didn't look to be THAT hard. I'm sure Ron is feeling like a human pin cushion by now. I never thought I would be helping them.

The reason that they are using these shots instead of a pill like comadin. Is because he needs to regularly get the fluid drained from his stomach, they need to be able to control it more so he doesn't have blood thinner on the days they are poking a hole in his belly. With the pills, it takes a while for them to take effect, and it takes a while for them to wear off. Where the shot starts instantly. Dr Larson also said the shots are more effective.

It was a good thing we went in when we did. The vein wasn't totally blocked yet. There was still a small amount of blood passing through. So we caught it before it got really bad. He does have to take it easy for a few days. With blood clots the danger is if it gets dislodged, it travels directly to the lungs/heart and that is fatal. So we are very relieved we caught it when we did. We also got him some crutches to help him around between now and when he is better. It hurts to walk on it.

Not too much else is new here. We are continuing to hope and pray for another miracle.

Just another note that there is contact info on the last entry for those working on the benefit if anyone wants any information. It is going to be the 19th of November at the legion in Chanhassen.

Ron and I do plan on going to the walkathon that is being done in St. Michael this weekend on Saturday October 30 at 9:30. if anyone is interested in that.

Thanks again for all of your prayers and support. We love you all.

Saturday, October 23, 2004 4:50 PM CDT

Hello,
I hope you have all had a better week then we've had! It's been a tough one. I'm sorry it took me a little longer then I had planned to update this, but we haven't had a lot of extra time lately.

So I guess I'll start with a couple things I realized I forgot to tell you last time. The condition Ron has is still esophageal cancer but it has mestacized (or what ever that word is--moved)to the abdominal fluid which is called "abdominal carcinomatosis malignant ascites", say that 10 times fast.

I also forgot to mention that the fluid will continue to build up, so Ron will have to go in every week for now and get it drained. He went in yesterday which was a week and 2 days since the first, those extra 2 days were too many. He was very uncomfortable on Thursday. He was very bloated, and had heartburn as well. Which makes it hard for him to eat, take any supplements or sleep. So we are going to try and not let him get that bloated again because we just can't fight this thing when he gets that way.

As you might remember they drained 4.9 liters of fluid from him the first time. Yesterday they drained 5.3 liters of fluid. So again he lost about 12 pounds yesterday. We were hoping they might only take out 2-3 liters, but unfortunately there was more in there.

On a lighter note I guess I need to clarify my "twins" comment in my last entry. No, Ron and I are not expecting, it was our joke because he felt like he was nine months pregnant and I'm supposed to be the one getting an altrasound first, I asked the nurse if we were going to be able to hear our twins heartbeat when they were looking for the fluid in Ron's tummy.

We are going to get a second opinion at the Mayo clinic. We received their call back Friday afternoon but we weren't home. So we'll call Monday morning and set up that appointment. Hopefully they can get us in this week. We haven't decided if we are going to do the chemo yet. We are hoping they might have some other options for us. We might go to Parker Hughes for another opinion.

I also forgot to tell you that I put in two new pictures in the "photo albumn" maybe you found them already. They are both from the trip we took in August.

I was asked to mention that there are a couple things going on if anyone wants to help, or participate in. We are very blessed to have so many people who care about us and want to help in what ways they can. We are humbled at the generousity and love that all of you possess.

I'm told there is a walk-a-thon happening this coming weekend (10/30) one in Grand Rapids,MN and the other probably in St Michael, MN. If you want to pledge or participate you can contact my mom Connie Mudge, at 218-326-6423, or email her at 2ofus@uslink.net

There is also a benefit being put together. It will be late November (before Thanksgiving) most likely. They are working on the place and the rest of the details. If you have any ideas, contacts that may be helpful, or want to help in whatever way the Lord moves you, you can contact any of the following people.

Rhonda Tirevold --Ron's sister --Chanhassen
twins2000@aol.com
Home:952-934-2089

Connie Mudge -- Kathy's mom--Grand Rapids
2ofus@uslink.net
Home:218-326-6423
Cell:218-259-3333

Jenny Konobeck--Works with Ron--Eden Prairie
Konobeck@netscape.net
cell: 651-335-3142
Work: 952-946-8401

Patti Anderson--Works with Kathy--Anoka
pattianderson@hoffmanonline.com
work: 763-422-2219

Cassi Beamer--Friend--Duluth
cbeamer@sprynet.com (make sure Ron is in the subject title,She has spam blocker)
Home: 218-525-0211

Noel Stiller--Friend--Eden Prairie
themanatee@aol.com
Home: 952-934-8304
Cell: 612-987-8687

Thank you again for all of the prayers and everything. We have had just an outpouring of love and support come our way since Monday. You help keep us strong and we love and thank you from the bottom of our hearts.

Tuesday, October 19, 2004 8:25 AM CDT

Good morning,

I'm afraid I have some tough news to share today. As I said in my last entry, we met with Ron's oncologist yesterday to get the results from all the tests they ran on the fluid that they drained from his abdomen. I don't think there is anything that can prepare you to hear what we heard.

He told us that it is the cancer again. This time it is in the fluid in his belly. The way he described it is like a grass or moss on the inside of Ron's belly. So it's on the outside of the intestine wall, the outside of the organs, and lining the inside layer of his belly.

That being the case, surgery is not an option because it isn't on one particular organ (like the liver or something) that we can just have removed. Radiation is also not an option because it is not in a centralized location and again, not on a particular place to target the radiation.

The only thing he had to suggest was that chemo might slow it down or by some time. He said it would not fix it or make it stop. He also told us he could take it in pill form instead of through an IV, if that was the hard part about the chemo treatment before. That way, if it was making him sick, he would have the control to just stop taking the pills. He said it would only gain him a couple months though. We haven't decided if we will use that route or not.

After last time, we just don't know if we can put him through that again, but we will consider it before we decide for sure.

When asked what kind of time frame we were looking at if nothing was done. The doctor told us about 6 months. I'm not exactly sure how they can figure that, but that is what he told us.

As you can probably guess, we are again looking for as many prayers as you can spare. We are definately not just going to roll over and let this take us. We know we have an uphill battle in front of us, but it is one that we are both ready to fight. Miracles happen everyday, we know. We've had one already. We plan to fight it with alot of natural stuff, and tons of prayers. We know that God is with us and will give us the strength and support that we need to make it through this valley too.

We will cling to each other, our families and friends and most of all our faith. God has not let us down before and we trust him fully with our new situation today.

So please keep Ron in your prayers for his health. He is such a joy and a gift to all of us. He says he's got at least another 50 years in him, and we need your prayers to help us achieve that!

We love you all and appreciate the overwhelming support and love that you all give to us.
Thanks.

Thursday, October 14, 2004 6:37 PM CDT

Hello,

We've had some things going on lately so I thought I'd jot them down just incase anyone is checking this anymore. We could use your prayers again for Ron. We don't know what is going on yet, but here is what has happen.

For about the last three weeks, Ron has been very bloated and very uncomfortable. We had tried a number of things trying to make him feel better, but nothing worked. He just felt bloated again as soon as he ate anything. He was planning to call his doctor on Monday, but this past Saturday (10/9/04) he said he just couldn't take it anymore. His whole stomach was rock hard like a balloon ready to burst. So we went up to Princeton to Urgent care at noon on Saturday. They sent us to the emergency room where we spent the next 7 hours. (not a very fun weekend)

They tested his blood--it was all fine.
They took an abdominal xray--looked good too.
They called in the altrasound nurse, (we were hoping to hear the twin's heartbeat but we didn't get to!)they did find that there was fluid in his abdominal cavity. We were relieved that they at least found what was causing him the discomfort.

The doctor said he could drain some of the fluid for testing and to help him feel better. So he shot in some novicaine (I don't know if that is spelled right) to numb the area, then they stuck in a VERY LONG NEEDLE. It was horrible! I've never seen Ron in so much pain. He was near tears, it hurt sooo badly. He said it was the worst pain he has ever had. They did get a couple of vials out, but it clotted up and they were not able to get more. So they sent what they had for testing, and Ron did feel a little bit better, but then we ate and he was bloated again.

The doctor at Princeton told us he thought it could be from a number of things. 1. He said the fluid could have been there for a long time and it just got infected somehow. (In which case antibiotics might clear it up), 2. It could be a result of the chemo/radiation treatment he had. (he said water pills might help if that were the cause). or 3. It might be cancer again.

From the preliminary tests of the fluid, the doctor found more infection fighting blood cells in it than he expected. Which lead him to believe there might be an infection. But none of the other signs were there. No fever, his regular blood count was normal, no pain... so that led him to think it wasn't. But he kind of wanted him to stay in the hospital until Monday to be on IV antibiotics. We decided to do an hour of IV antibiotics and he gave us a perscription for oral ones so we could go home and call his regular doctor on Monday at North Memorial. He also gave us a low dose perscription for water pills, so maybe between the two, one of them might relieve some of the pressure in his stomach.

As it turns out, they were not able to grow any germs in the fluid, so there is no infection in it. Thank God!

So we spent Monday and Tuesday trying to get into the doctor. (meanwhile Ron couldn't really eat or sleep well.) Wednesday morning at 7 am. he was in for a CT scan, and then we went in to get the fluid drained. He told them that he wanted to be put under because he didn't want to feel that much pain again. Their procedure was totally different and it was much better. They didn't even need to drug him. Just numbed the area.

They used the altrasound machine while they inserted a cathater in his stomach. (The doctor at princeton went in "blind" with his needle.) So we were much relieved to know they could see where they were going so they didn't puncture anything in there. Once they had the catheter in, we were allowed to go and sit with him in patient care while the fluid was draining into these vaccum sealed 1 liter bottles. When they told us that 4-5 liters would probably come out, we thought NO WAY! But it just kept coming out, and they kept changing the bottles...5 liters ended up coming out! We just couldn't believe there was that much in there! (That is like 2 and 1/2 of those big 2 liter bottles of pop if you need a comparison) He lost 11 lbs yesterday!! No wonder he was uncomfortable!

So he is feeling 100% better and he can eat and sleep well again. Although his stomach is shrunk from not eating for so long. He is a little sore/tender where they took the catheter out. He said taking it out hurt a bit, like someone was grabbing his insides as it went by.

So now we wait, and pray. We have a hard time believing it is cancer again, because he just got a clean bill of health 2 months ago. But I'll feel better when the doctor tells me that.

We go in Monday 10/18 at 2 to meet with the doctor to get the results.

So please keep Ron in your prayers, that it is not cancer again, but something simple and easy to heal.

Thanks and I'll let you know when we know.

Kathy

Thursday, September 30, 2004 9:47 PM CDT

Hello,

I'm not sure if anyone is checking in here anymore, but I figured I'd do a quick note just in case.

We are doing very well here. We've had a very, very busy summer. We've decided to keep our house and stay here for a few years, and we've been enjoying our boat very much. We had a wonderful trip out to Seattle for a wedding and to Hawaii to use up our time share. It was so relaxing and refreshing to be away from everything for a little while.

Ron is feeling great! I can't believe how far we've come from this spring. What a year! But we've made it!! Praise the Lord! Ron goes in for another CT scan the beginning of November. We pray everyday for his continued health, healing and strength!

Until next time....God bless.

Tuesday, August 10, 2004 7:01 PM CDT

Hello everyone,

Well it has been quite a long time since my last entry. We have been so busy lately. Mostly just living! We've been having a great summer! I hope your lives have been as blessed as ours have.

Well as I promised, it is August and we've had our 3 month check up, so here I am to tell you about it!!! To get the most important thing out first...Ron is still totally cancer free!!!! Allelluia! Now on to the details.

As I mentioned in the last entry, Ron was really sick of having his port in. So the first week of July we had them take it out! The doctor suggested leaving it in for a year or two....but we put the kabosh on that really quickly!

The procedure went extremely well, and once again Ron pulled through with flying colors. That is, once they had him scheduled for the right procedure. He scheduled it to come out in June, he took 1/2 the day off, and him and his dad went down there. But when they got there...they had him scheduled to have a different kind of mechanism removed, one that would take 15 minutes and didn't need any drugs. Come to find out they had to put him out and he'd be there a couple hours! So he was pretty bummed out to come home and still have that thing in.(Not to mention the surprise to me, his dad went with him, so after work, I raced home to meet him and see how it went and he said he still had it in! I thought he was joking! and then he showed me he still had it in!) So they rescheduled him for the right procedure, he took the day off and everything went fine! Boy was he excited to have that out! They went back in through the same incision, so he as a bit of a scar there, but that should lighten as time goes by.

Then last week he had the CT scan done and today we went in for the results. We felt good about things, but we were both a little nervous that they might "pop our bubble" and tell us it was back. So we waited anxiously, the doctor came in and said his charts looked excellent! There is no sign of the lymph nodes whatsoever, or of the tumor. There is a bit of thickening yet in the esophageal walls, but no mass! He said it was better than he expected to see.

He did see a little damage done to his lungs from the radiation, but that was to be expected and won't cause any problems down the road.

Then we scheduled his next check up for another 3 months out. (Nov 4th for the ct scan and Nov 8th to get the results)and we went to see his other doctor. He was just as impressed with how good the scans looked! He told us with that kind of cancer it is not very often it turns out so well. He told us that Ron has had exceptional results and he hopes they continue for us! We'll just continue to watch everything very carefully. What a relief it was to hear again how well his is doing! Thank God for Ron! He is truly my Miracle-Man!!! It is absolutely incredible what the Good Lord is capable of!

As for other things in our lives, we've got some new things going on. For one, we bought a boat in the middle of June and have been enjoying that immensely! When the weather cooperates, we are out at least twice a week! That was Ron's "I survived cancer treat!" He's wanted one for so long and we decided we needed to get out and live a little and enjoy ourselves!

We are also in the middle of deciding if we will move or not. There are pros & cons to both moving and staying. We love our house and our neighborhood and it would be perfect for raising kids here...but the drive is long, our family and friends are far enough away that we don't get alot of company, and it is a little spendy. So we have the house on the market to see what happens. We've spent hours talking and going back and forth trying to decipher where God wants us at this junction in our lives. We've decided that if someone loves the house and offers us full price (which will pay all fees and get us into the next house), then that is our sign to move. If that happens, we plan to downsize for a few years, and then look at possibly building. With the housing market so saturated up here, it is hard to tell if that will happen or not. If we don't get an offer on the house, probably by Octoberish, we'll change some things and just a happily stay here. Either way we know we're in good hands!

Besides, after getting another chance at life and our continued great news today...these other things are all small potatoes!

One more very exciting thing is that we leave next week (the 18th) for a 2 week, well deserved (we feel), vacation!!! We'll first go to Seattle, where one of Ron's best friends is getting married, and then off to Hawaii for 5 days too! After this year that we've had, we are both looking forward to just relaxing and getting away for a little while.

Wow, this got long. Sorry for rambling in your ear again, I guess we've had a lot going on in the last 3 months! Like I said before I hope each and everyone of you is enjoying your summer as much as we are!

Take care and keep in touch, Ron & Kathy

Wednesday, June 2, 2004 6:34 AM CDT

Good Morning!

Ron is continueing to get better every day. We've started working out and building up his strength again, and we've gotten out biking just a couple of times with all this rain we've had. Ron is also sick of having his port in, so he has called and left a message with his doctor that he wants to schedule to have it taken out. Hopefully very soon that will be out!!! Nothing hurts when he eats and he is feeling great! Things are very good here.

We also wanted to tell you all again just how much we appreciate you. Your support in the many ways, your thoughts, prayers, and words of encouragement have walked us through the most difficult time in our lives. And each and every one of you has touched our hearts and will always be loved by us. You were most certainly one of God's ways of holding us up!

This will probably be my last entry in here. There isn't much new going on from day to day now (Thank God!) I know alot of people have come here for our news, and I'm so grateful that we've had this. I guess we'll have to do it the old fashioned way now!!! We won't have any more updates until August when Ron has his next CT scan done. If you want to contact us, our number is (763) 856-2564, and my email is on here already but it is kathyrice77@aol.com

We'd love to keep hearing from you and what is going on in your lives as well!! Thanks again and we love you.

Wednesday, May 19, 2004 7:54 PM CDT

Praise the Lord oh my soul! God is so good and he has blessed us in many ways! The most recent being our news from the doctors today!

As you know we were awaiting the results from Ron's Friday CT scan. I decided before today came, that the only news they were allowed to tell me was that there was nothing left. But I was still nervous to see if they were going to listen to me or not!

We got to the doctor's today and he told us he had good news for us. He said the scans showed that everything had shrunk considerably! The largest lymphnode Ron had was 2.9cm and it was now .9cm (which we found out is in the "normal range". On the highside, but still normal). The rest of the lymphnodes were all normal. The tumor in the esophagus was also visably shrunken, but harder to measure because it is the thickening of the esophagus wall and not as easy to put a measurement to. When Dr Larson first told us this, to me it sounded like it was smaller but still there....and that just didn't add up to great news in my book. So I asked him if the cancer was still there, and he said no, not that they could see. There is scar tissue in there so it doesn't look "normal" but it is not cancerous at this point!!! Alleluia!!! That is what I was waiting to hear!

We expected him to tell us that he wanted Ron to do another round of chemo anyway..."just to make sure", like he had said previously. (We already knew we would not have done that, but we fully expected them to try to convince us to)But he never mentioned a word of that, so that was very encouraging. They were very careful not to say that Ron was cancer free, they said it could still be there microscopically, and of course he is now considered "high risk" for it to come back somewhere else. Common places would be the lymphnodes, liver, possibly lungs. So he will go in for another CT scan in 3 months to make sure it is stable and not changing or growing at all. We are extremely encouraged that what we have been doing ourselves naturally makes a huge difference in his health. And if he can do as well as he did while we are pumping him full of poison.....how effective can it be now that he is healing. We don't have any doubts that we have conquered this once and for all because we will continue in this change we have made nutritionally to continue to build his immune system and strenghten his body.

When we go in for the next CT scan, we will also schedule to have his port taken out. Dr.Larson mentioned he keep it in for 1 to 2 YEARS!!! That is just not going to happen. So Ron said he was ok with it for the next 90 days, but then it is coming out.

We could tell from the doctors expressions that he still couldn't believe Ron had done soooo well. I like having a miracle man in my life!

We are still hoping since Ron was able to avoid alot of the most common side effects from this rigourous treatment, such as the hair loss and constant sickness and vomitting, that we have a chance that he is not sterile either. The doctor told us to wait 3 months and then we should be able to get Ron tested to find out for sure. It was interesting because before Ron started the chemo, the doctor told us that Ron most likely would definitely be sterile, and today he sounded like after 3 months he should be regenerated and be just fine. Almost like he expected him to NOT be sterile. Miracles have already happened for us, we are praying for one more!!!

Once we left and were heading up the elevator to the parking lot, Ron remembered that his radiation doctor had wanted to see him today as well and he had forgotten to schedule it. We decided to run across the street to see if by chance Dr Nissi could fit us in so we wouldn't have to take some more time off to come back down another day. It worked!!! We just had to wait a few minutes for him to finish up with someone else.

He said alot of the same things as the other doctor. Of how well he had done, his disbelief that there were hardly and side effects, and how good the scans looked. The interesting and wonderful tidbit he added was that it was still early to take those scans and that everything will probably continue to shrink for the next 1 to 2 weeks!! That was even better news!!! They are going to get smaller yet?!?!?! SWEET!!

We have no doubt that all of your prayers have been a huge factor in our lives in the last 3 months...wow, it has been 3 months of this...how time flies when you are having fun, huh?! You all have been such a Godsend, we could never express to you how you have impacted our lives!!

I'm so happy to be bringing you this wonderful news of ours that Ron is cancer free that I have a hard time putting into words our excitement and relief. I'll continue to let you know how things are going, just probably not quite as often. And when are 3 months are up I'll definitely keep you updated.

Until next time, God bless you.

Monday, May 17, 2004 11:43 AM CDT

Hello,

I meant to get in here on Friday but the weekend just flew by. There really isn't a whole lot to update. We went in on Friday and Ron got his CT scan done, of course he got to enjoy the "banana flavored malt"!!!! (barium) Yum Yum!
Anyway, the scan was quick, they got him in and out. Now we are waiting until Wednesday morning to find out what is in there.

I don't think about it too much, and Ron say's he isn't worried about it. We both feel that it is gone. We are moving on with our lives and feel like this is behind us.

Every now and then I realize that it might still be there. That we don't actually know for sure that it is gone. So it will be nice to get our good news on Wed. (Because of course my rule still applies....No more bad news allowed!) We have a peace about it now, but it will feel 100 times better to get a confirmation!

Ron is doing wonderfully! It doesn't hurt at all to eat anymore. He said he feels "raw" on the inside of his esophagus, but it doesn't hurt. He has put back on a few pounds that he had lost and we are doings things a little at a time to get his energy back up. He looks GREAT!! (Not that I'm biased or anything!!! But other people say that too!) He got a little fishing in this weekend and caught a walleye! He was the only one, so he had bragging rights! and he took full liberty to rub it in! (that doesn't sound like Ron at all does it?!?)

That's about it for now, I'll be sure to let you know what news (of course the good news!) on Wednesday!

Thanks for everything!

Saturday, May 8, 2004 11:46 AM CDT

Good morning!

I hope you are all having a wonderful weekend. Sorry I didn't get you an update earlier this week. We were pretty busy. Ron is back to working his regular schedule(not quite as many extra hours yet) but he did work some over time and was the "late guy" a couple of times this week. He is feeling much better. On top of working longer hours, we also ran errands, and got a number of things done this week!! So we are happy to be getting back to normalcy (at least as much as was there before!)

Wednesday was a good day for Ron, we ate a Champps and he had his first cheeseburger in quite a long time. I think it was close to the best burger he's had yet!!! And starting that night he has also quit using his "magic mouthwash" to eat. (we didn't have it with us at the restaurant) After his first bite, I asked him if it hurt and he said, nope, I'm done. I'm not using that stuff anymore.

So like I said, we had a really good week!!

Ron gets a new CT scan done next Friday, May 14th. We won't know what the find is untill Wednesday, May 19th. That is when we meet with the doctor to see where we are. We've decided that the cancer is gone, and we just need the scans to confirm that for us!!!! We'll see if it listens as well as the doctors did when I said no more bad news!!

I hope you all have a very Happy Mother's Day!

Saturday, May 1, 2004 10:28 AM CDT

Just a quick note this morning,

Ron continues to feel a little better every day. His esophagus still hurts, but he is hoping by the end of next week to be able to eat without his "magic mouthwash".

He is also going back to work on Monday, (he been at home since Wednesday). So that will be good to get back to normalcy I think.

We are going to take our first walk today since all this has started, so it will be good to get out and get some fresh air, and move a little bit. Ron will have to build up his energy & stamina a little at a time.

That's about it for today! Have a great weekend!

Wednesday, April 28, 2004 9:06 PM CDT

Oh happy day!!!
Today we finally came to the end of Ron's chemo/radiation treatment. Friday was his last day of chemo, but today he is done completely! We are so relieved to be through with this stage in our lives. Now his body can heal itself, from the cancer and the rigourous treatment his body has been through these last 5 & 1/2 weeks.

This last week has been tough. Ron's esophagus has gotten very raw this last week. The challenge over the weekend was to get food inside him. We tried chicken noodle soup, tomato soup, even pudding hurt and he couldn't bear to have more than a few bites. Sunday we picked up a perscription they call "magic mouthwash", it is in liquid form and numbs the throat and esophagus. That helped a little and he was able to eat an entire bowl of soup. (the first full meal all weekend.) He was pretty weak and shaky by the end of the weekend.

Monday he picked up some Ensure (a nutritional drink) and drank one for breakfast. He said he immediately felt better. It still killed going down, but he stopped shaking and felt good having something in his stomach. He told me he was going to have a shake for all his meals until he felt better, but come Monday night, he asked for a bowl of the homemade chicken noodle soup I had made. He said he wanted a big bowl like he had on Sunday and he was going to eat it all. His stubborn self was back!! He uses his "magic mouthwash" and it seems to help some. The doctor told him it would be 1 to 2 weeks before his esophogus would feel better.

(Ron just came in and laughed at me for telling you he wanted a big bowl and he was going to eat it all, but tough, I'm going to leave it in anyway!!! It was great to hear that determination back in his voice!)

This morning, he also throw up for the first time since all this started. Which I know is extremely good to go that long and not get sick, but it is too bad he had to at all. But he felt alot better after. We are thankful it happened on his very last morning, instead of the first like it does for alot of people. After his radiation, his stomach was a bit upset again for awhile. The doctor told him today, that he has come through this much better than he could ever have hoped for Ron. So that was great to hear!

Ron's back has been a little sore these last few days too. (From the radiation, when they hit him from the front. It does get his spinal cord a little.) He was starting to feel a few effects from the treatment, again, we are thankful that he is now done and doesn't have to suffer anything more unpleasant than he is now. It is all downhill from here.

We've been doing some reading and studing. Learning more about nutrition and other people who have survived cancer. We are definitely not doing anymore Chemo or radiation. We truly believe the body can heal itself if you give it the right "fuel". We have a few friends and family finding all kinds of info for us to read to further our knowledge and to help guide us on this road to recovery and a lifetime of health.

I know I say this every time, but THANK YOU, for everything you all have done, and continue to do. Your support, love and prayers mean the world to us!

Saturday, April 24, 2004 3:48 PM CDT

Well, we made it!!!

The chemo is done forever!!! Only 3 days of radiation left. Ron had a pretty tough night last night, his stomach was hurting him pretty bad, and he felt weak this morning. He determined it was because he hasn't been drinking as much water this last week as he should have been. Once he got a few big glasses of water in him this morning, he started to feel better. It doesn't take long for him to get tired though.

It is hard for him to eat too, his esophagus is "sun burned" for lack of a better description. So it hurts when anything goes down. The metal taste is starting to go away already though. It will be a couple weeks before he really starts to feel good. But at least now he can begin to heal. We are so blessed that he didn't feel worse than this for a lot longer period of time. He could be 100 times worse than he is, so we continue to thank God for that. We will pray that He continues to preserve, protect and heal Ron until this is completely gone. I know God's hands are on him.

Thank you so much for all of you who have been supporting us through all of this. I pray for God's blessings on you each day.

Tuesday, April 20, 2004 8:12 PM CDT

Hello everyone,
I'm so glad we are done with our last "big monday"!! I can't believe this is Ron's last week of Chemo, only 2 and 1/2 days left! 10:30 am on Friday!!! Yes!!! (I know it still feels far away for Ron.) He had another great checkup yesterday. His blood counts were up again! 3.7!! (last week was 3.2) The doctor told him he was doing excellent! (As you can see, my nothing but good news rule still stands!!)

He is ready to just let his body heal..and until Friday, that isn't going to happen. But Thank God we are getting very close. He has decided to stay home this week. To get lots of rest and just to make sure nothing happens (like his bag getting caught on anything at work.) He doesn't want anything to go wrong, now that we are soo close.

This has really been alot for him. He never threw up or got "that sick". But his body just feels terrible on the inside. You wouldn't know it to look at him that he is sick or has cancer. But he said the inside just isn't good. He never imagined, what it would feel like.

We've done alot of talking in the last few days, and we've decided that he is not going to do anymore chemo or radiation once this treatment is done, no matter what. We are going to hit it naturally, we both have a lot to learn about nutrition, but with what we know already, and the glyconutrients, and other things we've been doing already. We both truly believe the body can heal itself, as long as you give it what it needs. We know that one of the biggest reasons he is doing so well, is from all the "extra stuff" that we are doing. So we are going to continue what we are doing and increase our efforts.

If it is still there, and he needs surgery....maybe, but he doesn't ever want to do chemo or radiation again. He saw this woman on a show on cancer, who had a huge tumor, and was pretty much written off as dead. She never did chemo or radiation, just nutrition, etc. and here she is 14 years later still cancer free.

Chemo and radiation can shrink the cancer, but it also does alot of harm and can actually cause more cancer from what Ron has been learning. He said if he were to decide all over again, he wouldn't do chemo at all.

But what's done is done, hind sight is always great right? I know I kind of rambled alot and I'm not sure it all made sense, I definitely know I couldn't really explain everything we've been talking about. But I wanted to let you know the direction we are heading. and we have to do what we feel led to do. We also know that prayers are another HUGE factor in how Ron is doing. So we will definitely keep that up as well. The Lord will carry us through to the end of this!

Thank you again,
Kathy

Saturday, April 17, 2004 12:42 AM CDT

Good morning!

We've made it through week 4. Only 1 more to go, Thank GOD! This has proved to be the toughest week so far. Still exceptionally well, all things considered, but Ron was pretty nauseas for most of the week. He also has a little bit of ringing in his ears, but he still has his hair! Even though it is only one week left, I think it feels like eternity to him. He has really been holding up well, but it gets to be alot for anyone. He'll get alot of rest this weekend. We have absolutely no plans. Just relaxing!(just what the doctor ordered!)

We did find out that the radiation will be 3 days longer than the chemo. He will take the chemo pump off for the last time on Friday, April 23rd. He will continue to have radiation the following Monday through Wednesday. He said he doesn't mind that near as much. The chemo is what he hates. So we will be officially done with this whole section of treatment on Wednesday, April 28th! We are getting close!

What comes next I know some of you wonder. ( now all of a sudden I can't remember if I've told you or not,I guess I'll recap just in case.) They will wait 2 to 3 weeks after he is finished with everything (to give the radiation time to finish it's work.) then they will do a new CT scan. What happens next really depends on what they find. If it looks like it is gone, we will ask for a new PET scan and/or biopsy to know for sure before they give him more chemo "just to make sure", without knowing what is there. If the lymph nodes are gone, but the tumer is still there but smaller, maybe cancerous, maybe not. We'll have to discuss options. Maybe surgury down the road to remove what is left, I'm not sure. But we will continue to pray it is totally gone, and we just need to get a scan done every 3 months to monitor him.

Thanks for all your support and prayers, we love you all.

Monday, April 12, 2004 6:28 PM CDT

Hello everyone,

Another good check up today! Ron's chemo doctor (who is the one we see every Monday) was on vacation today, so we met with a different doctor. They did his labs, which are still great!!! (the one that was 3.5 last week, only dropped to 3.2!) Thank God! And his temp and everything are just fine. So he gave the go ahead to keep to the same amounts as he's had all along. (If someone's body isn't tolerating the treatment well, they will lessen the amounts or change the plan as needed. It all depends on the person, they make sure they don't overload your kidneys and all kinds of things I don't understand! Ron has been tolerating it so well, they've been able to keep to the original plan all 4 weeks so far!

We only have one more Monday left!!!

Thanks again for your prayers and thoughts!!
Bye for now!

Sunday, April 11, 2004 12:39 AM CDT

Happy Easter everyone! I hope you are all having a wonderful day!

Things are quiet around here. Ron gets a little nauseas off and on. So we are just laying around today. We are greatful to be more than halfway done, but know we have two hard weeks left. We've been told all along that it will get harder as the time goes, we just continue to pray Ron's body continues to heal and function as well as it has so far.

I know I for one, am very, very proud of him, he takes everything in stride and has such a terrific attitude. I know it is getting a little harder for him mentally as well as physically. But he doesn't complain. I know it is getting old going to the clinic everyday at lunch, and he just wants to be done, but he continues to take one day at a time and slowly but surely we are getting to the end. He is an inspiration to me everyday, I realize again and again why I wanted to spend the rest of my life with him.

Anyway, sorry for the emotional sidetrack, I just wanted you all to know how incredible he really is,(not that you didn't already know that right!?!)

Well, tomorrow we start week 4. I'm anxious to see how his labs are when they take his blood tomorrow. So not much more to report today. Thanks for all your continued prayers for him to heal completely. I'll let you know how tomorrow goes!

Wednesday, April 7, 2004 8:53 PM CDT

Hello!

Halfway day!! Now it is all down hill!

I just wanted to let you know I worked VERY hard to get a couple pictures in our photo albumn. It wasn't working very well, thank God my aunt was online at the same time and she helped me out tremendously! (Thanks Mona!!)

I still couldn't see them from my computer-very strange, but she told me they were on there. So I hope you can see them and enjoy them!

Ron is still doing great, pretty tired in the evenings but otherwise very good. He's getting a bit tired with the whole routine. He'll be very happy to be done with all of this. (And I will too!)


Have a great day!

Tuesday, April 6, 2004 8:23 PM CDT

Wonderful news again!! Thanks for your prayers, they are all working!

We met with the Chemo doctor again yesterday, and they did his labs again (took blood). You may or may not remember, but last week his labs were still REALLY good, but they had gone down a little bit from the week before. This week....they actually went back up a little bit!! The main one they are watching(I'm not sure what it is) was 4.6 the first week. (They get concerned if it gets down to 1.5, and they would give him something to boost if it goes down to 1.0) Last week they went down to 2.9 (Which they were all still very impressed with) This week it went up to 3.5!!! We were soo excited to see that, and even more so when none of the nurses or his doctor could believe they were that good! His doctor told him his body was definitely tolerating the treatment better than most. Said he must have good enzymes or something. His homecare nurse told him he is like a poster child for his treatment, but she didn't want to jinks him. She just couldn't believe it! Said it was very unusual for him to actually be getting better while still getting treatment, especially 2 chemo's and radiation!

Then when he went in for radiation today(he brings them a copy of his labs so they can see them) The nurses there were flabergasted and asked him what he was doing!! When he told them, he said they told him he should patent it or something! They told him to keep up everything he is doing, along with his great attitude!! What a wonderful relief and answer to our prayers to have all the medical staff trying to figure out how he is doing so well!!!

That, along with the fact that tomorrow he is halfway done with this treatment has us very happy around here! Ron said that the good news alone will carry him through this week! Then there is only 2 weeks left! He will be so hyped to be done, I think the last 2 weeks will go fast.

We also found out yesterday that depending on what the CT scans show after this is done, will determine if they want him to do more chemo, "just to make sure". That was the first we'd heard of that. We were assuming that when this five weeks were done...we were done. But we'll just have to take each day as it comes, and do what we feel we are led to do.

I still haven't gotten that picture yet, I'm sorry. I'll see what I can do. If I can't get that one, I'll have to come up with a different one.

Love you all and thanks again.

Sunday, April 4, 2004 11:32 AM CDT

Good morning everyone,

I hope you are all doing well. Things here are good. We are having a nice weekend and are ready to start week 3. Ron is feeling good still, although he does notice that he gets tired a little faster and doesn't have as much energy. He also had a little bit of nausea yesterday afternoon. That pasted quickly though. We are excited to be almost halfway through his treatment. He is anxious to get this 3rd week out of the way. So he will feel very much relief when this week is done. Then it is all down hill, right? We hope so!

That is about it for now, thanks for the continued prayers. They are all very much appreciated.

Thursday, April 1, 2004 8:29 PM CST

Another week almost drawing to a close! 2 down and 3 to go! Ron has figured he really only has 12 days left of chemo, because he only has that on for 4 days!!

We've got lots to be thankful for here... Ron is feeling GREAT! He is not sick, still has all his hair, he can swallow better (which means the tumor is shrinking!!), his food doesn't get stuck anymore, his throat isn't sore yet from the radiation either! He is a little tired after coming home from work but otherwise he is terrific!!!

His nurse in radiation today asked him if he was having any side effects. When he said "no", she asked if he would tell her if he was. He told her of course. She couldn't believe how well he was doing. She had been looking at his counts and was astonished at how healthy he was. She told him they were hitting him really hard and he wasn't even phased by it. She told him to keep doing whatever it is he is doing!!! (Thank you God, and thank all of you for your prayers!! They are working!!!) She says his age also must have a lot to do with it!

He saw the radiation doctor today too, and after checking him out told Ron that "there is nothing wrong with you!!!" (other than the obvious!!)

We are so blessed to be doing so well! I'm really glad that I decided to put my foot down and demand nothing but good news!! That is all we've gotten since!

Tomorrow morning Ron gets the pump off again for the weekend!! Yeah! He is pretty excited, but who could blame him! Let's hope the alarm doesn't go off at 4:30am again like last week!

Thanks again for all your support. I know some of you are asking for a picture, and actually we had a friend take one last weekend. I just have to get him to email it to me and I'll stick it on here.

Until next time....God bless.

Tuesday, March 30, 2004 7:02 AM CST

Good morning,

Just a quick note today. The weekend was great. We met with the chemo dr. yesterday. They checked his blood counts and they are still looking good. They did drop just a little bit from last week. But the doctor said he is doing great. Dr Larson also said you can usually gage how someone will endure the entire treatment by how their body reacts the first 1-2 weeks. Since Ron did so well last week, we are very hopeful it will continue to go as well.

Ron got radiation and both chemo's yesterday. He got the pump put back on. So things are good here.

Have a nice day! ( I promised I'd be quick today! Not too much to report!)

Sunday, March 28, 2004 6:47 AM CST

Good morning everyone,
Sorry I didn't get this in here yesterday. We ended up being out all day.

Friday was a pretty crazy morning. The alarm on Ron's pump went off for the first time. (of course at 4:30 am!!!)

It said "high pressure" which we were told usually meant there was a kink in the hose somewhere and just unkink it and the alarm would shut off....there was no kink. He looked, I looked, we both looked again and again..nothing. But every minute when it cycled again, the alarm would go off again. So Ron called the homecare nurse and she had him try a couple things, nothing worked. So she had him change the battery. It worked, which I found weird because the alarm didn't say "low battery" it said "high pressure". It cycled a few times and the alarm didn't go off. The nurse told him that if it went off again, to call back and she'd have someone come out to the house.

We got as far as me back in bed and Ron in the bathroom before it went off again....now it was 4:55am. So we called the nurse back and she said someone would be there in about an hour. So we got about our day, showered, made juice and waited.... He got there a little after 6. He said he would try flushing the system, but if that didn't work he would have to take the IV out and re-stick him to set it all back up again..(which was a horrible thought because Ron was getting it off for the weekend in 7 hours! We didn't want him to be pricked again.)

So we got him the supplies that we had, and he unhooked the pump and flushed his IV with some saline or something. That did the trick! It cleared right out and he was able to draw blood back out of it. So thankfully, he rehooked the pump, took Ron's vitals and left. All this before 7 am ( I don't recommend it as a good way to start your day!)

On Friday afternoon, we had the potluck/benefit at Ron's work. I just wanted to tell those of you from Fargo, that there is no way that we could begin to express to you our gratitude and appreciation for the incredible love, support, and generousity that you have shown us. Thank you just seems so inadequate, but it comes from the bottom of our hearts.

Just after the potluck Ron left to get his FREEDOM!! They took the pump and IV out and he received his last radiation treatment for the week!!! 4 weeks to go! We just pray that the next four go as smooth as the first one did. Ron is extremely happy to not have any IV's in him, and no fanny pack to maneuver all the time! It's an extra 4-5 pounds.

I think it is good in more than one way for Ron to have the weekend off both radiation and chemo. One, his body gets a couple days to really try to recoup itself and start to heal, and secondly, I think it will also break up the weeks a bit and make them seem to go faster because he has something to look forward to every Friday. I can't imagine how eternal it would seem to have that pump on 7 days a week for 5 weeks. We are thankful the doctors changed that part of his treatment!

That's about it for now. We are going to lay low today. Enjoy the rest of your weekends.

Thursday, March 25, 2004 6:59 PM CST

Hello everyone,

Sorry I didn't get back in here sooner. I find I'm a lot more tired than usual and the days seem to disappear and I don't get all the things done that I should.

Well we're almost through our first week!!! Only four more to go!!! Yippee! Ron has one more radiation treatment tomorrow, and he'll meet the homecare nurse to take the pump off and the IV out for the weekend. He is very much looking forward to his freedom.

Ron continues to be doing well. He is starting to get a little tired. He ended up going home early yesterday, and he is tired today too. He said he felt the tiniest bit nasaeus today ( I guess I can't spell that word today!),but not too bad. And his throat is starting to get a little sore too, but otherwise he feels just fine. We'll take that blessing, he could be feeling a lot worse.

He saw his radiation dr. today (Dr Nisi) He told Ron that he is doing good so far, but also that things will get a lot worse before they start to get better,especially as far as his swallowing goes. He did tell him to keep doing what he is doing, vitamins, and lots of rest, etc...so hopefully we are doing every right that we can.

Tomorrow the people at his work are having a potluck/benefit for Ron. (Bless their hearts). I know I'm looking forward to seeing everyone there,(I used to work there, so I get to see some old friends!) Then our plans for the weekend are to relax, and enjoy it!

Monday we meet with the chemo doctor (Dr Larson), he'll get radiation,and both chemo's. The 1-1/2 of cisplatin, and he'll get the pump with taxol put back on. I think he will probably take most of Mondays off. (those will be his longest days)

I forgot what else I was going to tell you, I guess that'll happen when you've got so much going through your head! I'll remember and tell you later.

I cannot say Thank you too many times nor can I begin to express what you all mean to us. You make it easier to keep our spirits up by surrounding us with your love and prayers.

Good night

Monday, March 22, 2004 6:03 PM CST

Hello,
Well today was the begining, Ron got his first radiation & chemotherapy treatments today. We are finally starting the fight against this stuff. It is almost exactly a month since we found out it was cancer (2/20/04) It feels good to finally take action and stop talking and testing (both very important steps, mind you!)

He is doing wonderfully! The radiation only took 5 minutes. He lays on a slab/bed thing, and there are red beams that they use to line him up from the little tattoos they put on his sides, stomach & chest, to make sure he is flat. A laser comes down from the top and zaps him for a little while, & then the machine rotates to be under him and he gets radiation from the bottom too. He doesn't feel a thing, (which I found surprising) Then he is done for the day.

The chemo took a little longer. First we found out what drugs they were using and got to ask questions. Then they accessed his port with a needle connected to a small tube. Before the drugs, they flushed it with saline water, and an anti-naseau drug for about 20 minutes.

Then they hooked up the real thing. cisplatin (or something like that) this drug he'll get for 1-1/2 hours every Monday. While he was getting that, the homecare nurse came in and we got to answer more questions for more paper work. Then she showed us the pump Ron will be wearing from Monday -Friday for the next 5 weeks. He wears it in a fanny pack, and it runs on batteries. Apparently it will beep if we cause any trouble!!! So he'd better behave! It is actually pretty slick, it will be quite inconvenient for Ron but it is much better then him being in the hospital for a week, or getting more chemo at once to hold him 3 weeks. It will certainly be nice to not have to wear it on the weekends.

When the cisplatin was gone, they attached the pump with the second drug pitaxel (again, or something like that! You can tell I'm definitely not in a medical profession!) There is only enough in each bag to last 24 hours so the bag that feeds in through the pump needs to be replaced everyday. The nurses were nice enough to coordinate this change with his radiation schedule which is already set. A home care nurse will meet him after he is done with radiation to change him when he is finished everyday. She will even meet him at home or at work if necessary. When she see's him on Friday's she'll disconnect everything and Ron will be free for the weekend. Then be hooked back up the following Monday.

Everyone we've worked with has been sooo nice so far. We feel blessed to have such good care for him. Of course he deserves nothing but the best!

Ron does not feel sick at all yet, he does have a funny metallic taste in his mouth(which they said is normal for a few days). The nurse said she doesn't suspect he will get very sick. But we have some extra drugs to help if he does. They are going to check his blood counts every week. We were told they probably won't drop much after the first week, but after that they will start to, probably the same with the hair loss. They looked at his counts today and were surprised at how good they were!! (very encouraging!) They said he is sitting in a very very good place to be starting from. We sure do like to hear things like that! They continue to comply with the rule I've set....no more bad news! Nothing but exceptional news!!! They are all listening so far!! I never know I had so much pull with the medical field! Ron also continues to have a WONDERUL attitude! We have placed everything in the Lord's hands, so that doesn't leave us much to worry about!

Thanks for checking up on him again today, we love and appreciate all of you!

Saturday, March 20, 2004 1:25 PM CST

Happy Weekend to you all,
Not too much today. We are just enjoying our weekend before we start treatment on Monday morning. Ron got a call from his Dr's nurse yesterday. It turns out his chemo doctor had been on-line talking with other doctors looking for an even better way to do the chemo portion of Ron's treatment. They called to tell us they are going to change it a little, they have been having GREAT results and it is even going to become the "norm" for treating Esophageal Cancer. Instead of doing the chemo 24-7, He'll have 2 different drugs. One drug he will get for 1-1/2 hours once a week. So when he goes in for his radiation on Mondays, he'll also sit for 1-1/2 hours in the chemo rooms hooked up through his port. Then when that is done, they will hook up the pump with the second drug. This he will wear until Friday when he goes in for radiation and they will take it off. So Sat & Sun, he will get neither the radiation or the chemo. We'll find out lots more about this on Monday when we go in. Like what drugs, how the pump works and all that. But we are excited and hopeful that they continue to find better ways to treat this, and are not afraid to let us know and change the plan we had. This way Ron will get weekends off all together! That's about all I know for now.

Thanks for all of your posted notes to us! They are wonderfully encouraging to read. Everynight we come home and get on to see if there are any new ones!! Thanks for sending your love our way! (and your prayers!)

I'll let you know how it goes on Monday!

Tuesday, March 16, 2004 6:27 PM CST

Hello again,
We spent another long day at the hospital today. We did get a 3 hour break in the middle and got to leave to have breakfast and mill around a bit, instead of 8 hours straight. None the less, our first appointment was at 8am, and we did not head for home until 4:30pm. I wonder when we start collecting our pay checks!!! We sure are putting in the time!

Anyway, now for what you really wanted to know anyway....

Good news again today!! We sure are counting our blessings!! We met with the radiation doctor this morning, and he answered all of our questions. We also got everything taken care of and in place, ready to start the treatments. Ron will start both chemo and radiation on Monday morning (3/22). The radiation as we knew will take 5-10 minutes, the chemo the first day will take a little longer. (1/2 hour maybe) But otherwise will just be a cartridge change and will monitor itself. They will hook this pump into the port he had put in. We are told it looks like a fanny pack.

The radiation will be M-F and the chemo will be 24hrs a day, 7 days a week. The whole treatment will last...only 5 to 5-1/2 weeks!!! We were anticipating 2-3 months!! So we are very encouraged by that.

The other good news is that the doctor doesn't seem to think it will phase Ron at very much. Maybe slow him down a little, but nothing too bad. He said there are drugs and things they can do to reduce nausea and other side effects, but he really doesn't think Ron will need them. Ron is planning to keep working and he'll run to North Memorial everday for lunch to get his radiation. We are very hopeful now that he will not get that sick, and only miss a few days of work if need be. He will take them if he needs them.

We also asked about his white blood cells. When we were talking about the clinical study they mentioned that they may get really low which makes him suseptible to getting really sick. The study talked about a shot of some kind that boosts them so they regenerate faster to help fight off any viruses or colds. When we asked about that shot today if it would be possible if he needed it. The doctor said his white blood cells really shouldn't drop that much but that he would be monitored and taken care of if need be. That was definitely a relief to hear as well.

We are comfortable and hopeful with this plan that we've got set. Now everything is finally ready to start. We are both anxious to get him started. The sooner we begin, the sooner we get to put this behind us. After he is done with the treatments, Ron will get a CT scan done every three months as follow to keep an eye and make sure it doesn't come back, and if it does to catch it early.

Thanks again for all the prayers, we know they are working and appreciate them.

Until next time...!

Friday, March 12, 2004 6:45 PM CST

Hello again,

GREAT news today!!!! Praise the Lord!!!

The scans showed no new cancer sights!!! Only the few lymphnodes and the original tumor which we knew about already! We were so very relieved to hear that! (I could literally feel my stomach unwind after I found out.) Of course it was towards the end of the day...but well worth the wait! The only thing better would have been to hear that it had disappeared!!! ( I know I have big dreams!! But it's possible!)

We also got a little better idea of our plan of action. We'll meet both the radiation and chemo doctors on Tuesday the 16th. He'll be doing Chemo and radiation together. They'll make a "plate" (I'm guessing something like a template) for the radiation placement. Once that is made when he comes in everyday, I think they'll put this on him and it shows them where to shoot the stuff. This way it will only take 10 minutes, since they don't have to remark him every time to get it in the right spot.

We found out the chemo will be done through a pump that he will leave with. It will give him a steady low dosage continuously throughout the week. Instead of hitting him with a month's worth in one treatment. Apparently he'll be able to shower and everything with this pump on. The nurse told him he might get sick but not everyone does. Most people start to get sick 2-3 weeks into it, but she told him since he is so young, he may not get sick at all! (which would be wonderful!!!) He will most likely lose his hair though. (He'll still be beautiful, just ask him, he'll tell you!!!)

The radiation doctor is the one who decides all the timeframes for the whole treatment, so we should know how long all this will last after Tuesday as well. Once we get everything set up on the 16th, he'll get scheduled to start the actual treatments.

I've decided that only good news is allowed from this day forward! I just hope the doctors will comply with my decree! It sure does feel good to have a change in our luck. I know the Lord has heard all of our prayers and is holding us in His hands. It seemed like up to today, every test they did, they came back with more bad news. We finally broke that trend! We believe we are right where God is guiding us to be though. For whatever reason He didn't want us to have the surgery (especially with that first surgeon) and we just continue to trust where He leads.

Thanks for tuning in, I hope you all have a wonderful weekend, I know we will after all this awesome news!

Thursday, March 11, 2004 8:23 PM CST

Hello everyone,
Not a whole lot new today. For most of today we waited (not very patiently) for a phone call that never came. We were hoping to get the phone call from Dr Larson, our oncologist, to tell us if they found more cancerous lymphnodes by the pancreas or not. As well as let us know what Ron's treatment schedule is going to be. (Since we are hoping to start on Monday.) Ron left a number a messages at the cancer center and spoke with the dr's nurse but they hadn't received the results from the PET scan in yet, and Dr Larson wanted to see those before he scheduled the stuff apparently. So we did our best to get more news today but it just wasn't meant to be.

As of this evening Ron is feeling pretty good. He stopped by North Memorial today to get his dressings checked on his port. They took off the gauze and said he was healing wonderfully! They were really impressed by how good it looked. We are just hoping that reaction continues all through his treatment.
So now there are just two pieces of clear tape over his port. You can definitely tell there is something in there. There is a bit of a lump where it is inserted, as well as the incision of about 1-1/2 inches. The pain isn't too bad. He's only needed 2 of the pain pills since we came home, one yesterday and one this morning. He doesn't like taking that stuff though, I doubt he'll use any more.

The radiologist told us that some people actually go directly downstairs for chemo as soon as they get their port in. At least Ron will have about 5 days to let himself heal up before he needs to use it for chemo. He said he couldn't imagine going straight into it.

He also got some more blood drawn today. I think he feels like an overgrown pin cushion at this point. His regular doctor got papers from Dr Larson this morning letting him know Ron will be doing his Chemo at Princeton and the radiation at North Memorial. He said everything is moving along and they are all praying for him and crossing their fingers. That was nice to hear from a doctor. He also said not to worry about not hearing about the scan yet.

So thats it for today. Hopefully we'll get our phone call tomorrow.(early tomorrow!!!) Thanks for checking in.

Wednesday, March 10, 2004 5:20 PM CST

Hello everyone,
For those of you who aren't familiar with our situation yet, I will recap so we are all on the same page, so sorry if this first one is REALLY long. It's been a LONG two weeks...and we've had alot of info thrown our way. If you already know parts of this, feel free to skip ahead to the days you haven't heard about.

2/12/04---
Ron had been having difficulty swallowing for about 3-4 weeks so he decided to get it checked out. So on Thursday 2/12/04 he went to the doctor. The doctor thought it was probably just from heartburn, but to do the swallowing test he'd have to go to the hospital.

2/16/04---
On Monday 2/16/04 he went to North Memorial and swallowed some goop (barium I think). They told him he does have a lump on his esophagus, but not to get excited, it could be many things.

2/19/04---
The next step was Thursday 2/19/04 we went back to North Memorial for an Endoscopy (They put a scope down his throat to look around). While they were down there, they did some biopsies to test it out. We were told he does have a tumor, the size is about 2 inches. It looks suspicious of cancer, may or may not be. They usually don't see that in people under 60. Which he found very unusual.

So at this point we knew it had to come out either way...just depended on how much stuff our Ron was going to go through to get to the end. They also took CT scans of everything from his chest to his pelvis, as well as blood test that day. Then we went home to wait.

2/20/04---
We both went to work on Friday, 2/20/04 and awaiting that phone call. Not knowing if they'd tell us over the phone or if we'd have to go in. It was about 12:00 noon when Ron called me at work. He had just talked to the docter. He sounded very excited on the phone. So I was surprised when he told me the tumor was cancerous. They also told him it was all contained, but there were a couple of lymph nodes nearby that they didn't know if were cancerous or not. They told him there was nothing in his liver or lungs or anywhere else. So they would be able to do surgery, take it all out(including lymphnodes if needed), and that would be it. Maybe a little chemo or radiation to make sure. That is what we were praying for. If it was cancerous, that we caught it early and it hadn't spread everywhere already. That is the one thing Ron said he wasn't ready for. So he scheduled an appointment to meet with a surgeon on Monday, 2/23/04. Ron had and still has such a positive attitude about all of this, which made it a little easier to hear the news.(especially over the phone.)

He called back 5 minutes later. The nurse had called him back and told him that she had just realized that Monday was his birthday and she wasn't going to have him come in on his birthday. She said she had an opening that afternoon and asked if we could come in! What a God-send that was. To be able to get in, and get some answers instead of waiting all weekend not knowing anything.

2/20/04 afternoon---
So we met at home and headed back to Robbinsdale. We met with the doctor and it was a bit more serious than we expected. He told us it was a major surgery. They would recommend taking out his entire esophagus. Recovery time would be 7-10 days IN THE HOSPITAL! They used to take out just the portion that had the tumor, but that consisted of an incision in his chest and his abdomen. Side effects including acid-reflux, and leakage(which if happens, apparently is not good in the chest.) They started taking out the whole thing around 1990. That included an incision in the neck and in his abdomen. Then they bring his stomach up and connect it to his neck/throat. Side effects:no acid-reflux, and if there was leakage, better in the neck then the chest. He believed he'd get all the cancer out and probably do chemo and radiation after to make sure. We asked how often Ron would come in for follow up to make sure the cancer doesn't come back. He told us they really don't do follow up because there is nothing they can do anyway. That REALLY surprised us. He told us to take time, get a second opinion if we wanted talk to our family, then take care of it. He said he wouldn't wait more then 2 weeks. We ended up scheduling the surgery for the following Tuesday, so we could get moving towards healing.

As soon as we left we realized that neither of us felt good about this doctor. He definately gave us the WRONG answer on the follow up question. No follow up was just not good enough for us. So we called back from the exit ramp and canceled the surgery, we decided to get a second opinion.

By this time it was too late on Friday to set up any more appointments. We'd have to wait until Monday.

2/21/04
Over the weekend a few different people did some looking on the internet and found this cancer therapy called PDT (photodynamic therapy) It sounded wonderful if he were eligable to use it. They inject this chemical in you, then a day or two later, they go down your throat with a tube/laser. When this special red light reacts with the chemical, it produces oxygen and kills the cancer cells. No damage to the healthy cells. Only major side effect is that you are very sensitive to sunlight for 6 weeks. The only thing we thought might not work was if Ron's was too big.

2/23/04---(Ron's birthday too)
So Monday we went to work and figured we'd make phone calls to set appointment from there. He had gotten a list of doctors who used this PDT and tried calling them. He was talking to the U of M when I got home. Turns out they did it but only after chemo/radiation & surgery. That didn't make any sense to us and made us kind of angry, since everything we'd read said it was used in the early stages and this guy only did it if it was spread. We just didn't understad why you would go through all those other horrible things first if you could catch it with PDT. By then it was too late to call anyone else. So we decided to stay home half of Tuesday to make phone calls and get some sort of plan together.

2/24/04---
Tuesday 2/24/04 we spoke with a number of doctors, in Rogers, at the U of M, and the Mayo clinic. We set an appointment at the U for Tuesday 3/2/04. The doctor there did the same surgery but does it orthoscopically. (through a little camera so there is only 2 little incisions instead of a gash on his neck and abdomen) From talking to the Mayo it sounded like Ron's tumor was probably too big for the PDT. But since we couldn't get in until Tuesday at the U. We were able to set an appointment on Monday at the Mayo just for one more opinion.

More waiting.

2/27/04---
The U of M called and said they would like Ron to come in for another endoscopy on Friday, 2/27 before his appointment on Tuesday. This would save us a week in the process. So we went Friday morning. They put another tube down his throat (their scope is more detailed and they can get more info then from the first one he had done.) The pathologist told Ron her concern about having to go past his tumer with the scope because she wanted to get into the top of his stomach. If she poked through or anything they'd be rushing him to the OR.(warm fuzzies right?)

Thank God everything with that went fine. But she came in and told us that there were more lymphnodes behind his stomach that were also cancerous. (3 bigger ones 1-2 cm. and a "bunch" of little ones.) This was good & bad news. Bad because now surgery is not an option. If they can't get all the cancer, they don't do it. and there is no surgical procedures to get those. But it was good news because at least we know what we are dealing with. If we were to cut him open and not get it all, either it could spread extremely fast while he is open. Or even if it didn't and we'd have gone with the first surgery, we would have thought Ron was cancer free....they would have done no follow-up...and we probably would have found out 1-1/2 to 2 years later when it was way too late. So we were sooo thankful to have gotten our second opinion.

That leaves us with Chemotherapy and Radiation. Since surgery was not an option, and radiation would be everyday. We decided to cancel our appointment with Mayo and with the U of M. Because he couldn't go to Rochester every day. So they called and got us an appointment for Thursday, 3/4/04 with an Oncologist at the Hubert Humphrey Cancer Center at North Memorial since it only takes Ron 15 minutes from work to get there.

Surprisingly enough this would be the 1st Cancer Docter we would see.

3/4/04---
On Thursday 3/4/04 we went to HH Cancer Center. We had the opportunity to participate in a clinical study for esophageal cancer. We got alot of info about this study, it would take 2 to 3 months. It included Chemo and Radiation combined. The study was on added certain drugs together in the chemo to see if it had a positive impact. So one group in the study would have 2 drugs during Chemo and the other would have 3. Ron would have had to get a dual port inserted.(Tubes inserted by his right shoulder with 2 tubes hanging out, this dumping into the main artery instead of using regular IV's. They could hook the chemo there and Ron would wear a "pump" home and be able to go more than one day straight with the drugs and not stay in the hospital.) Everyone seemed to think it sounded like a good idea because you are so closely monitered in those trials. I didn't have warm fuzzies from this meeting and it didn't get better all the way home. Once we got home and Ron and I talked about it. It turns out he thought I was all for it, but he wasn't sure. and I thought he was all for it but I wasn't convinced. It didn't take us long to determine that neither one of us felt comfortable with him being a ginea pig, and getting to be pricked and checked more. So we decided that we would do just plain old chemo and radiation. This way Ron could get his Chemo done at Princeton (which is only 10 miles from home) and the radiation at North Memorial.

We don't have exact answers on alot of the details yet. Ron called and told the doctor we weren't going to do the study, and told him where we wanted to get the treatments done, and that we wanted to start the week of 3/15. Hopefully Monday. The only reason we didn't start this week (3/8) is we found out there is a high chance that these treatment will leave Ron sterile. And since we do want to have children when this is all said and done. This week we are taking precautions to make sure we still can no matter what.

3/10/04---
We finally got caught up to today. Wednesday 3/10/04. Today we got to spend another 7 hours at the hospital. He had one more scan done this morning at 7:30 (a PET scan) They injected him with some more stuff and in this scan all the places the cancer exists with glow or light up some how. They wanted this last test because one of the notes from the CT scans suggested that it may have spread farther. And there may be lymphnodes also by his pancreas. So we are thinking that we are finally do for some good news from one of these tests. And praying that they don't tell us that it has spread there as well. This afternoon they also put in a port. Not the dual port like they would have needed in that study but a single one that is totally under the skin. It is about the size of a quarter, a little bigger. Since these drugs are so caustic, if injected into a smaller artery like the arm through an IV. The vein could just shut down. So they put the drugs in through this port by his shoulder and it dumps into the biggest artery he has and can dilute faster. It also saves Ron from getting an IV everytime he goes in.
He is a bit sore from that procedure today and a little tired but doing very well. We made sure to get him some DQ on the way home.

We are not sure of his chemo/radiation schedule yet, but from what we've heard from others is that radiation is usually every day, and chemo is usually once every 3 weeks or so. We are praying that since Ron is so young, healthy and yes, stubborn that he will not get as sick as some do on chemo and radiation. We are trying to boost his immune system as much as we can with glyconutrients, xango juice and we've just ordered a juicer to get him lots of fresh fruits and veggies. We have been told because he is young enough to handle it and also because of the type of cancer he has...they are going to hit him fast and hard with this stuff. It is hard to know what to expect once we start. We are hoping for a phone call from the doctor tomorrow to give us some more answers and a schedule.

We appreciate all of you who are out there praying for Ron. We know that is the best thing going for us. This is a little easier with such a wonderful support system. We are blessed with wonderful families and friends.

Again sorry this first one was so long..but now we are up to date. Thanks for caring.

Wednesday, March 10, 2004 5:11 PM CST

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