One more for old times sake

I've been trying to get this video up for the past two weeks...finally success.

Cheers,

Eddie

The last post

Well this will be the last time we post anything up here. Thanks to everybody that has come out in support of our family over the past few days, months and years. Dad touched the lives of many people and many of you came out over the past few days to remember him and help us.

When dad asked me to start this blog for him it was under the pretense that it would be uplifting and informative, he didn't want it to turn into a living memorial or become some sort of countdown. There were days when good news flowed forth and days when we suppressed the bad news. Some days we expressed hope when dad made little steps towards getting better and some days we reached out for prayer and support when his treatment took a step back. Many people have said they were happy to have this site as a way to check on dad.

Since the night dad passed away we have been in awe of the ways people have paid respects to dad and helped our family deal with his loss. Pastor Mike at St. Paul Lutheran Church in Orion, IL did wonders preparing a wonderful service as well as counseling us during the process. The congregation of the church did many wonderful things for us in order to hold dad's visitation and funeral service at the place he worshipped for many years. The friends and family members that traveled long distances to be with us. The friends and family that brought over food and hugs to the house. Sandy and her staff at Esterdaul Mortuary are top notch people that helped us plan and prepare a truly honorable way of sending dad off. The Coast Guard Auxiliary Honor Guard stood by dad for the duration of the visitation, changing stations every 15 minutes with a salute each time. Saturday at the church the Orion American Legion Honor Guard passed by dad's casket one by one, each member saluting as the paused by dad's side culminating with Tracy Hepner walking up and placing her hand over her heart. The Military honors that dad had given so many times in the past were in honor of him - the 21 gun salute, the playing of taps and the folding of the flag are things that will bring even more tears to my face in the future than they did before.

Dad was a great man, he will be missed but he will live on in the hearts and minds of many people.

Eddie

Schedule of things

Here is the schedule for the next two days:

Visitation for dad will be from 4pm-8pm Friday July 10th at St. Paul Lutheran Church in Orion, IL (1001 9th St., Orion, IL 61273).

The funeral will be at 10am on Saturday July 11th again at St. Paul in Orion.

Memorials may be made to the church or to the Coast Guard Auxiliary, Flotilla 93 located at Sunset Marina in Rock Island, IL (phone #309-738-8546).

Dad's coming home

Dad passed away a couple of hours ago. For all of you that have followed over the past couple of months, we thank you. For those of you that have sent cards of support and said prayers of hope, we thank you. I'll put a final posting up here in the next few days as we make his final arrangements.

Eddie

Not too much to say today

From talking to mom today there really isn't much of an update regarding dad. He did start moving around a lot more over the weekend which in turn earned him a set of arm restraints so he doesn't try and pull the intubation out of his throat. One of our goals here sometime soon is to make a decision on the respirator. There are two ways we can go with his breathing; dad can have an endotracheal tube inserted via a surgical procedure which can aid with his respiratory rehabilitation or they can try to take the intubation out and see how he does. For the latter option it could be more traumatic for him if they have to reinsert the tube if he has problems. The former has it's drawbacks since it's a surgical procedure. Basically the doctors want to see dad more aware and awake before they make a decision. He has been showing signs of improving but we don't know if he's up to the task yet.

Tomorrow mom and I are heading out to meet with the palliative care staff to discuss comfort options for dad as he continues to battle the fungal infection, the neuropathy that has resulted and overall rehabilitation of his body. Palliative care is a course of symptom or pain management that is used for long term care of those with a serious illness. In dad's case it may be used in tandem with the treatment that has been underway for his fungal infection. As of today dad has been non-ambulatory since the start of June, was on sedation for about 5 days and has been extremely weak since entering the ICU three weeks ago. Hence the need to possibly start the palliative care. I never heard of that word until last Friday and I've already used it a couple times today in this entry.

Until later this week, keep thinking happy thoughts.

Eddie

Changes

First I need to update everybody and let you know that dad is becoming more aware and is able to respond to people with blinks, head nods and squeezes of the hand. He is still in the ICU and still on the respirator but appears to slowly be coming out of the fog he's been in for the past two weeks.

This morning we discussed a change of plans with dad's physicians. The fungal infection that has taken hold of dad is the primary issue. This type of infection takes a long time to treat - weeks or maybe even months. The infection is causing dad to experience some neurological issues like loss of motor skills and extreme weakness in what the doctors call a form of neuropathy. It could take months of rehabilitation for dad to resume normal activities as a result of the toll the infection has taken on his body. Because of this dad will not be able to resume treatment for his lymphoma until his body is strong enough to take further chemotherapy. Our focus for the next few days is to see how dad improves and if he can get off the respirator. Sometime in the future we'll be making some decisions on how to continue his treatment in order for him to be as comfortable as possible.

For now, keep thinking happy thoughts.

Eddie

Two months

Well the dad update for now is not much different than the last. He's still fighting to come back from the set backs caused by an adverse reaction to one of the drugs administered during the last round of chemotherapy and harder still the fungal infection that has him in the medical intensive care unit at the University of Iowa Hospitals and Clinics. As of today he still hasn't come around as much as we would hope, but the doctors have told us that it might take more time for him to bounce back.

The title of this post is "Two months". It's been two months since Ronnie, Mom and Dad made that fateful trip to Iowa City. I could write a lot about the past two months but I'd just be repeating the pages of this blog. For now I'm going to keep it short and sweet.

Get better pop. Like that poster in your office used to say "Get out there and GET WELL WELL WELL!" (The original said "Get out there and SELL SELL SELL")

Little increases

Hello again. The dad update after yesterday goes a little something like this. The MRI from Friday night didn't show any size increase of the five lesions that were found earlier in the week. They're not going to be able to determine the real extent of any damage caused by the lesions until dad wakes up more and they can run some tests on him. He is showing signs of coming out of the fog. Yesterday he was able to open his eyes and move them from side to side when the neurologist asked him to so. He also made eye contact with us for a bit and tried to lift his head off the pillow at one time. There are a couple theories right now as to why he's not coming around as quick as the doctors would like him to. (NOTE: Theories only, there has been no final diagnosis.) The fungal infection spreading to the brain most likely caused the lesions and there might be some stroke like damage in his brain. They are not seeing any damage to the thinking part of his brain, which is good. His EEG showed more activity than they would expect for somebody in a state like dad. Translation: dad's brainwaves are showing his brain is more awake than his body is. They think it's possible he's extremely weak from fighting the infection and simple lacks the energy to move much. Overall they are seeing tiny improvements day to day just not enough as of yesterday to wean him off the respirator. He has been passing and exceeding the ventilator trials each day, it's just that they want him more alert and in control of his throat before they extubate him. Oh and his arms are still swollen from the blood clots, hopefully his body starts rerouting things. The PICC line is out and he is only on two venipuncture IV's in his legs for the medications. So again, we're making tiny steps forward.

From talking to everybody over the past week you start to realize how much of a medical education you get when somebody has an illness like cancer, especially if they develop other conditions as a result of the treatment. Questions like "How is your dad doing?" become conversations about blood counts, respiration numbers, chemotherapy schedules, listing off medications, fluid balance, etc. Another thing you start to realize is how truly special the people are that are in the medical field. Every single person that I've met that has helped dad has been nothing short of a saint. For those of you that are reading this that are a nurse, a doctor, a technician or in any of the health professions - thank you for what you do everyday.

Among the plethora of advice dad has given people over the years is the story of the bulls. I'll have to modify the story a touch considering the audience of the blog, but it goes something like this:

Two bulls, an old bull and a young bull, are standing on top of a hill side looking down on a pasture of the most succulent oats they've ever seen. The young bull turns to the old bull and says "Hey, lets run down there and eat some of those oats!" The old bull replies, "Let's WALK down there and eat them all."

Dad, keep on getting better even if it's a walking pace and not a sprint.

Where we are

I'm going to keep this brief tonight as I don't feel like writing but know that there are many of you who want to know the latest. The echocardiogram last night did not reveal any issues with dad's heart, which is good news. However, he's still not showing any signs of becoming more awake other than occasionally opening an eye which is a big concern to the doctors. They feel he shouldn't be in this state at this point and should be looking better than he is. Another MRI is on order for tonight to see if the lesions are growing or shrinking. I believe they are also going to do an EEG to see what sort of brain activity is going on. Mom, Ed, and I are headed out there tomorrow for consultation with the doctors to determine what the next steps are in this.

Ron2

The hits keep coming

They say its darkest right before the dawn, lets hope thats true. The MRI yesterday revealed five "spots of interest" on dad's brain. It's not known at this point if these are lesions caused by decreased blood/oxygen flow or if they are caused by the infection. Doctors took spinal fluid yesterday to culture it to rule out the infection. Until they know what is going on with his brain, they can't give any anti-clotting agents for fear of what it might do.

In addition to that, he has developed a clot in his right arm now so we're quickly aproaching a point where something needs to give. And if that weren't enough, dad will be getting another echocardiogram today because they want to check to make sure he doesn't have a hole in his heart, which can apparently reveal itself in the form of the brain lesions he is showing.

Peace,

Ron2

More complications

Things continue to pile up on dad. He has developed a clot in his left arm but before they can treat it he needs another MRI of his head to make sure the infection he has didn't do anything to his brain. If any lesions are discovered, he'll need surgery to repair them. Let's pray it doesn't get to that point. Otherwise they'll start giving him medicine to treat the clot.

The doctors took him off of sedation yesterday morning and are waiting for him to come around. Our hope is that once he come's to, we'll get a better assesment of where he is with his breathing and if he's doing well he can come of the respirator.

Thats all for now.

Peace,

Ron2

Monday update

Because we've gone a few days without any excitement, dad decided to add a new trick to his show by having a bout this morning with a rapid/irregular heartbeat. Fortunately, the doctors were on hand to witness and in talking to them afterwards they indicated that what happened is very common in patients that are fighting pneumonia. They gave him a new med to keep his heart in check and he didn't have any episodes the rest of the day. His lung xrays continue to come back with improvements but he did need two units of blood today. His hemoglobin had got just low enough that they felt it would be good time for an infusion. Maybe a fresh supply will do him some good.

He continues to be stable and is fighting hard to get over this. Please keep him in your prayers until we are out of the woods with this.

Peace,

Ron2

An open letter to dad on Fathers Day

Dad,

Not sure how much you've been picking up from everybody in the room over the past few days but right now they're adding another medicine to help treat the fungal infection in your lungs, this one in concert with another hopefully will start helping you get better. Your blood counts are holding steady or improving which is showing us that your immune system is battling things and your bone marrow is producing the various parts of your blood that you need. Right now you're stable and resting as comfortably as possible for somebody who is very sick. If you don't remember any part of the ICU experience I don't blame you one bit.

Today is your 53rd day away from home and Fathers Day. Hopefully the medicine starts to work and we can get you out of the ICU, out of Iowa City and back home sometime soon. Until then, rest easy and get better.

Love,

Eddie

Morning update

Well, it was a fairly quiet night for Dad. It started out a little rough as we had several mishaps with the feeding tube that was installed earlier in the day. The first tube that was put in was defective and had to be removed. The second tube that was installed coiled around and didn't reach his stomach. The third attempt didn't show up on the xray. Finally, on the fourth try the saw the tube on the xray but when the nurse went to pull the guide wire it appeared stuck like the first one. As my blood pressure steadily increased, two nurses working together were able to get it removed. At 11:00PM, he finally began to receive some nourishment through the tube. The liquid that he is getting is much better for him than the IV fluids and will give his body more nutrients to work with.

His vitals continue to look good. So we'll be playing the waiting game and see what happens. On the plus side, he hasn't had a fever in a while and his breathing appears to be much more relaxed. Hopefully this will get him past the hump and let his body recover a bit as it continues to fight the infection. I watched yesterday as they did the bronchoscopy and was able to see the infection he's fighting. We should know within a day or two exactly what it is and see if there are any other antibiotics that can assist. Also on the plus side, Dad's blood counts continue to look good. It's been a long time since he's had any platelets or blood products, which is a sign that the chemo has knocked back his lymphoma a bit.

So, we're back to where we started: he has to get past this infection. Being on the respirator is a major setback for him and all of us, but despite the difficulties there are still possibilities that benefit him and are worth trying at this point.

As Ed mentioned in the previous post, Pastor Mike and Helen came out yesterday and did a great job comforting us. They gave up some other commitments to be here and we are very grateful to them. Also Natalie's sister Michelle and her friend Robyn stopped in to cheer us on.

In closing, as I always do, I ask that you keep Dad and Mom in your prayers. That God would guide the doctors and nurses and that there hands would be His. That Dad's body would get the rest it needs during intubation and be capable of fighting the infection and continue to get stronger. That the test results would give us a better chance of finding an antibiotic that will work. And finally, that Mom would continue to have the strength and courage to face all of this. She's been doing such a good job, but we all have a breaking point. We've been in a down cycle for a long time now, it's time for some better things to start happening.

God's Peace,

Ron2

How we stand

Dad was intubated early this morning and put on a ventilator. He is now sedated and his body is relaxing as the ventilator does the job of breathing for him. Today was a pretty busy day for him in the Medical Intensive Care Unit; after getting him stabilized in the morning they performed a couple procedures on his lungs to help clean things out and get some samples of the buildup to analyze. They haven't performed a tissue cultivation as they feel this could be harmful to his already taxed lungs. He had a chest X-ray today that showed the infection has now spread to both of his lungs. The doctors are constantly refining their treatment plan in order to get dad better. He's in good hands out there.

Mom, Natalie and Ronnie are going to be out there tonight. Hopefully the magic touch they had earlier this week will work again. On behalf of our family I want to thank Pastor Mike and Helen for coming out to talk with all of us today. I've never been through anything like this before and both of you were very comforting.

Eddie

Bad news

We got an early morning call from mom. Dad has to be put on a respirator. We're not sure what happened overnight, but mom, Ed, and I are on our way out there. Please pray for us.

God's Peace,

Ron2

Better than yesterday

I'll just give you a quick run down of the last 24 hours. Last night I sent Mom and Natalie away and spent the night with Dad. For the most part he did pretty well overnight. He had a few episodes where he got feisty and removed his mask. I let him have his temper tantrums then quietly slipped it back on. As tiring as it got to be at times, let me tell up front it is was an absolute honor to be by his bedside taking care of him. It was only a small repayment on my part of the all the years he stood by my in a time that seems so long ago.

By 3:00AM, he began to sleep pretty soundly so I finally laid down myself. Mom got to the hospital around 6:30AM and he was still sleeping and held that pattern for most of the morning. He did run a few fevers during the day, but they didn't seem to last as long as before. He still has a lot of confused moments and delirium, but there was also more of a hint of his old self creeping back in: being bossy, micro-managing the nurses, and even some attempts at humor. He's clearly a different person than the guy I saw on Tuesday, but he's still weak, worn-out, exhausted, and trying his best to keep going.

Twice today he sat on the edge of the bed and even stood up for a bit. His nurses were there to help, but they claim he did most of it himself. Each time took the wind from him and it took time to get his breathing and heart rate back down. But he wanted to get moving which shows just how unbelievably strong he's trying to be and how he keeps fighting.

The word from the plethora of doctors that are working with him is that they want to see him continue to breathe with the aid of oxygen and show steady improvement. The overall consensus is that what might normally take you or I several days to overcome could take Dad weeks. The other tidbit of good news today was that his white blood cell count came back up. Yesterday it was 5.3. Today it was 7.5. In general, this means his body recognizes that there is an infection and is doing what it can to fight it. Additionally, his right lung where the infection is sounded better than yesterday. More slivers to hang on to.

Ed and Rachel came out tonight to check in on him and brought with them two beautiful and thoughtful presents: a picture book they made of all Dad's flowerbeds in bloom at the house, and a framed picture of their stunning engagement photo. Dad's face lit up at both. He takes so much pride in his gardens and my heart broke when I realized that he hasn't been home in so long he hasn't been able to see how pretty they are.

I realize my quick update has turned out to be quiet lengthy, so I'll wrap up with two other highlights of the day. First was a surprise visit by Sue and Dave DeDecker. They've always been such good friends of the family and today we were reminded of why. The second highlight of the day was watching Dad pray The Lord's Prayer with Pastor Breed when she came to visit. He appeared to be asleep but as soon as she started with the words, he piped in right with her and then thanked her when she was done. As hard as the last three days have been, I realize that we have been and are still being blessed through all of this. Please pray that we continue to have strength for the coming days. The road is still very long and filled with uncertainty.

Love & Peace,

Ron2

Holding pattern

Just a quick run-down of the events from the last 24 hours. Last night I got home at about 10:15 leaving Natalie and Mom to rest at Michael and Christina's in Tiffin. About 10:40, the nurses in the ICU called me and asked if someone could come in and be with him as he had become extremely restless and agitated. I called Natalie and she immediately came in and worked wonders in calming dad down and getting him to sleep. The BiPap face mask was driving him crazy, but to her credit she got him to settle down.

About 5:00AM, dad woke up so Natalie asked the nurses if he could have the BiPap removed for just a bit to clean up and get a break. They agreed and soon found that he was doing ok without it, but still needed oxygen. So, the big BiPap muzzle was replaced with a much more friendly and normal oxygen mask. Dad had perked up a bit by then and even sat at the edge of the bed for a spell. He didn't have much awareness of the previous night, but according to Natalie he had a good long stretch of being aware and more like the old dad we know and love.

We've talked in detail with the doctors and everything is coming down to one factor: how well dad's body is going to do in fending off this pneumonia he has. They've tested his heart, looked at all other possibilities and nothing else is revealing itself. They continue to give him a broad spectrum of antibiotics and hope that his white blood cells can do their trick.

Tonight I sent Natalie home and mom back to Tiffin. I will be here overnight and into tomorrow until Ed can get out here. For now, things are holding steady but as I've come to learn and expect, things can change quickly. Please keep praying. He continues to get fevers every 12 hours or so and gets pretty delirious when they occur. We're in a delicate dance.

God's Peace,

Ron2

Please pray.......

I realize the post has been quiet for too long, but there has been a lot going on and updating this site has been last on any of our priority lists these days. To sum things up, dad has been moved to the ICU because he is battling an infection in his lungs and he is having a hard time breathing. He has been placed on a biPap machine to help him get the oxygen he needs. Overall, his vitals are good and his blood counts are where they should be. It just appears his body can't shake this infection for whatever reason. At this point it would appear to be either a bacterial or fungal form of pneumonia, but the doctors are still trying to draw a bead on it.

So at this point, he'll continue to stay on the biPap until his lungs can recover on their own. They will continue to administer antibiotics as well. If he gets worse, he'll be intubated, which carries with it a whole new set of concerns and risks, so please pray that he bounces back quickly.

Being on the biPap machine is proving to be difficult for dad as he feels claustrophobic with it on. Several times this evening he tried to remove it and had to be calmed down and reassured that it was good for him. I guess the positive in those actions is that he still has some fight in him, which is good. But it feels like to all of us that everything that can go wrong, has gone wrong and it's hard not to feel snake-bitten at this point. Every small sliver of hope we can find keeps slipping through our fingers and for me personally it's getting harder to find the good in all of this.

Please, keep our family in your prayers. That dad would recover from all of this and be kept comfortable as he battles through this. For my mom, Ed, Rachel, Natalie, and our kids as we struggle with the physical, mental, and emotional exhaustion that is quickly creeping in.

Peace,

Ron2

Two steps forward, one step back

Patience is a virtue, so us Farwell's must becoming pretty virtuous I guess. Dad had another rough day mixed with good and not so good events. On the down side, the infection he has been battling appears to have originated in his PICC line. It was due for removal tomorrow so they stepped it up a day and pulled it this afternoon. The only real downer to this is that he'll be back on an IV for other meds, but its not a show-stopper. Hopefully he'll start to rebound a bit after this. He was short of breath again this morning, but all his vitals are still looking strong, so it's being chalked up to his fluid retention and battling the infection. He was pretty much wiped the whole day so mom stayed home and chatted with him off an on. She'll be trekking out there again tomorrow. Please pray that she finds him with more energy and feeling better.

On the plus side, his white blood cell count this morning was at 2.5. That's quadruple what it was yesterday which is a great sign. Despite fighting an infection, his body is making white blood cells again and showing signs of getting back on-line in terms of blood production. Pray that this continues to trend up for him. If you put things in perspective and consider all that he has going, I would be exhausted too.

Anyway, thats all I have for today. Hope tomorrow brings better tidings.

Peace,

Ron2

Turning a corner?

Well, it's been a trying few days here but maybe, just maybe we're turning a corner......

Last night I went out and sat with dad for a couple of hours and I have to be honest, it broke my heart. Never in my life before have I wanted to trade places so badly, wishing I could somehow, someway give him some of the energy and strength that I have so he could feel normal just for a while. He still has a lot of things going on all at once: fighting the methatrexate side effects, a bacterial infection, mouth sores, and other miscellaneous issues that come from fighting cancer. But not once in the entire time I was there did he complain or wish for different circumstances. Despite his extreme fatigue and exhaustion, dad has kept all of this in perspective. In his own words, what he is going through "beats the alternative." It's not false bravado, he's way too exhausted to put up a front. But it's his positive mindset and despite the blows he's been given, he's pressing on. I cried 74 of the 75 miles I drove home last night thinking how brave he's being and how he keeps fighting.

Today, we got what we hope is the beginning of a new "up"cycle. First, his white blood count (WBC) was up to .5. Yesterday it was at zero. This means that his body once again is starting to produce white blood cells, which is exactly what we need to see. His hemoglobin count was up a bit too. Platelets were looking good. He's also starting to show more of his sense of humor and has even teased mom off and on today, which is a great sign in and of itself. He seemed to have more energy today and the doctors have told us that once he stabilizes further he'll be able to come home. He'll start his third round of chemo once he's had a chance to bounce back a bit further. We've still got a long, long way to go, but today was the first hint of a bright spot in a long time.

I'll close by asking what I always ask: please keep mom and dad in your prayers and thank you to all the loyal followers of this post for your support and encouragement. You all are making a difference to us and we are truly blessed.

Peace,

Ron2

Quick Update

Hey all, sorry its been so quiet here lately. In all honesty, its been hard to write anything given there hasn't been much to write about other than the baby steps that dad has been taking the last several days.

Overall, he appears to be doing better than last week. He seems to be much more aware and even showing signs of his humor returning. He's also starting to micro-manage his day again, which is another positive sign. Probably the biggest issue at this point is his overall weakness and the mouth ulcers. Obviously, eating is a chore but talking can be painful as well. In dad's own words, if it weren't for the sores, he would feel "ok". Then again, its all part of this wonderful journey we're on with this.

We're not sure if/when he'll be able to come home yet but we keep hearing talk that he'll start his third round within the next 10-14 days. The doctors are going to change his regimen given his reaction to the methatrexate, so we're not sure what the meds will be, timing, etc. We won't know much more until dad is recouped a bit and getting his counts back up. At this point, he had to have blood and platelets today, which is par for the course.

Anyway, we're holding steady. Wish he was feeling better, but he seems to be doing better than last week and we're seeing signs of the "old" Ron coming back. Keep praying and drop him a line when you get a chance. He could use a little encouragement.

Peace,

Ron2

Holding Pattern

Just a quick update for the day. Dad seems to be making small improvements but is still very weak and battling the side effects of the chemo. Blood counts are down, his weight is down, and our moods are down. He's not wanting to eat and who could blame him? It's counter-intuitive to try to force something down your throat when you have no appetite.

Mom did decide to come home today to take a break from the "fun". She's been such a trooper through all of this and its hard for her to break away. Love, duty, and commitment are strong bonds and leaving dad behind at the hospital is not easily done. Still, the kids and I convinced her to join us tonight at Central Park for the Community Band concert and movie in the park. I think it was good for her to get out and experience some normal life again. And talking about things with her friends is always good therapy!

As things progress, we'll keep updating the blog here, but we're in a holding pattern right now. Keep the prayers coming, please. And for all of you out there following this, please send a word of encouragement or two to dad if you get the chance. Every little bit helps.

Peace,

Ron2

Nothing new........

Just a quick update for everyone................according to mom, dad has maybe made some slight improvements today. His speech is still slurred, but when he was awake he appeared more alert. He ended up sleeping most of the day though. I'm sure the cough syrup (with codeine) is playing a role in that. His MRI from last night came back negative and some other tests have also come back negative, so at this point it wouldn't appear to be anything more than how his body is reacting to the methatrexate. The doctors will continue to monitor and see what happens. They have told mom that they wouldn't expect any benefits from the cough syrup therapy for at least 24 hours, so as the world turns in cancer treatment, we sit and wait, and wonder. Please keep him and mom in your prayers tonight. Clearly we're in a "down" phase this week.

Much love to you all...........

Ron2

Well we're stabilish for now...

Well we still don't know what is wrong with any amount of certainty. The medical professional "hunch" right now is that dad's nervous system may be adversely reacting to the methatrexate which was a part of this last phase of chemotherapy. The treatment....cough syrup. Yeah no kidding, cough syrup. Now this is not the complete or final diagnosis of this latest development but it gives them something to try with dad that may help. The MRI is still on tap to take a better look at his brain. They also did nervous and respiratory system tests this afternoon both of which were OK.

Eddie

Days like this aren't fun

I'm kind of at a loss on how best to phrase everything that's happening today so bear with me. Dad's not doing the best right now due to some sort of neurological issue that has flared up. Ronnie noticed dad had slurred speech last night when talking on the phone and then mom noticed it again when she called him this morning. He has very little energy right now and has had at least two episodes today where he zones out and his speech is impaired, something isn't right. He's already had a CAT scan which so far hasn't yielded anything conclusive. His vital signs are still good. The staff here at the University of Iowa Hospitals are trying to get him an MRI ran sometime this afternoon in addition to performing a battery of tests to try and diagnose this new problem. We might not have an answer tonight.

Keep the fingers crossed.

Eddie

The anticipation...

Talked to dad again tonight briefly. The past few weeks have taken a lot out of him and he's been pretty tired. He had his I believe 4th spinal tap this afternoon and that should be it procedure wise for this round of chemotherapy. Now we're waiting to find out when he will be released and if he'll get to come back to Orion for a little bit before heading out to the Hawkey Healing Headquarters to begin another round of treatment. On a side note there is talk of him getting a port implanted in the coming weeks to aid in the overall process. As some of you reading this blog already know from past experiences a port is a good thing as it reduces the risk of infections associated with a PICC line or constant use of a veinapuncture IV.

On an administrative note, since we really don't know where dad will be week to week it is best to send cards and other notes to their house in Orion. We've got a system in place to get the mail collected, sorted and delivered to them no matter where they are in the two state region.

Hopefully the next post will be from dad while he sits in the comfort of their house, keep your fingers crossed!!!

Eddie

Back on the bags

They just started the Cytarabine drug flowing. This is the last big dose of chemotherapy drugs for this phase, and by big I mean big. Big bag of stuff. Right now the bag count is at five. Some big ones, some little ones. They are all clear liquids. Took three people to hook them all up. The whole process is quite amazing.

Well all things are going very good out here (except for the new low sodium diet) until next time, have a good weekend - enjoy the last two days of May!

Eddie

Live from the University of Iowa Hospitals

Morning all! For a limited time we're going to be blogging live from dad's room. Quick update on his status. Mom, Rachel and I arrived around 8:30am this morning to see how he is doing. Still doing as good as ever. Right now the treatment is focused on chasing out the infamous Methotrexate with another drug. Potential discharge this coming week will be based on how well this other drug reduces the level of Methotrexate.

So........if you are reading this and it's sometime after 9am Central Day Light Savings Time, post a comment or question and we'll answer them live!!!!

Round Two

It's been a busy day, but dad is back in what is sure to become familiar surroundings on the 7th floor bone marrow ward at the University of Iowa hospital. The early start to the morning and a lot of "hurry up and wait" at the VA made for a long day, but he's settling in for round two. Overall, he's doing well but had a slight fever this morning and some minor chest congestion so we'll be keeping an eye on that. But the doctors didn't seem too concerned.

On paper, this round should only last 3-4 days so hopefully things will go smoothly and he can be released early next week. Still not sure if he'll be able to head back to Illinois at any point in the near future, we'll just have to wait and see. But for now as he settles back into the hospital routine, keep the prayers, positive messages, and good vibes coming his way.

Mom will be checking in on him tomorrow morning and then head back to Orion in the afternoon and then take Friday off. She's been doing a great job watching over him and certainly deserves a little break! With him being back in the capable hands of the U of I nurses and doctors, she can hand the baton over to them for a while.

Anyway, that's about all I know for now. In parting: Dad, best of luck, hugs and kisses, and much love to you as you start round two. You're proving to us every day just how strong you are and you continue to be an inspiration to us through all of this. Just keep slugging and giving it all you've got. We come to expect nothing less from you and is the very reason why you have been and always will be my hero. I love you and miss you......

Ron2

Counts are up!

The site's been quiet for a bit as there hasn't been much to report, but we've had a flurry of activity in the last day here and there is lots to get caught up on........

Ed's visit on Friday and the Boney/Carroll consortium caravan on Saturday seems to have brought some good luck to the Tiffin area this week. During Ed's visit, we learned of the slight up-tick in dad's white cell count, registering in at .7 and the first time in days it hadn't read zero. Today the VA called and advised us that the results from yesterday's blood draw has dad at 12.5!! That's like winning the lottery in terms of white cells and is great news as it means dad's body is doing what it is supposed to do in manufacturing new blood products. His platelet count is also looking good and the hemoglobin didn't drop too much to cause any concerns. Again, all of this is great news and signs to us that the prayers and medicine are working!

So the plan at this point is that dad will most likely start round 2 tomorrow. He'll first go to the VA for admittance and then be transferred to the University of Iowa hospital like last time. While this was the plan as of this morning, things of course can change so we'll see if this holds true, but the bottom line is that he should be heading into round 2 very soon. Also, the second round isn't as time consuming as the first cycle, so tentatively we're only looking at 3-4 days to administer. We're all hoping that he responds well and can actually come home for a while before round 3. Getting back home would do him wonders at this point!

As I know more or as things change, I'll let you know. But for now, thanks for all the support and prayers. Keep them coming though, it's still a looooonnng road........

Ron2

Are we there yet?

Wednesday is the next checkpoint we're coming to. Dad will meet with some of the oncology staff at the V.A. to determine if his blood counts are where they want them to be in order to start the next phase of treatment. Again if the blog goes silent for a couple of days, don't worry.

Have a good Memorial Day everybody!

Eddie

TGIF

Totally Good Information Friday.

Took dad to the VA this morning for his routine blood draw, PICC flush and wait to see what his blood counts were. Got some good news from the lab, his white blood cell count was up, his hemoglobin is good and his platelets were high enough that he didn't need any blood products today. So after changing the dressing and valves on his PICC line we were back on the road to the Mike and Chris's house to "celebrate" a quick and easy trip to the hospital.

So now we just wait and hope that things keep on the up and up in preparation for the next round of treatment.

Eddie

Not too shabby

Well I talked to dad for a bit tonight. He got some premo pain medication to help with some troublesome mouth sores. This issue is very common for patients undergoing chemotherapy since a lot of the drugs attack rapidly dividing cells in the body. Your mouth is pretty much full of said cells and therefore problems arise. But the doctors are on top of it and are taking action to prevent an infection. I'm heading out tomorrow morning to bring the mail along with what I'm pretty sure is a felony quantity of prescription medicine to be trafficked across state lines. Mom needs some of her medicine and instead of telling me exactly what to bring, Dad's exact words were "Just bring it all".

Hope everyone has a good start to the Memorial Day Weekend. Be careful driving, boating, golfing, BBQ'ing or riding.

Eddie

A note from the "other" Ron

First off, a big heartfelt THANK YOU to all of those who have been praying and keeping dad in your thoughts. Although there have been the expected ups and downs, he's being an inspiration to us and keeps slugging. I've said it before and I'll say it again, he was my hero before all of this and continues to be even more so.

Secondly, as you read through previous posts from Ed, you'll note the heavy use of "Ronnie" in reference to me. Honestly, I haven't been called "Ronnie" this much since grade school. From here on out, when you see "Ronnie", please substitute in your mind "Hammer", "Thunderhorse", or "Deuce".

Talked to mom this afternoon and dad is finally loosing his hair. This was to be expected, but he's also battling some other side effects along with being tired. So keep the good vibes going his way. Also, if anyone has any good ideas regarding hobbies he can take up as he goes through all of this, let us know. A guy can only read so many books, do so much on the internet, and watch so much TV. Obviously sky diving and long distance running is out, but if anyone seriously has some good ideas, shoot them our way.

In closing, I wanted to send a special thanks to Mike and Chris for letting mom and dad use their house and guest room. Your willingness and readiness to help out has been a pure blessing and we can't thank you enough!!

Ron - out

Hair today, gone tomorrow

I guess the biggest thing I learned today from the phone call is that dad is starting to lose his hair from the chemotherapy as well as experiencing some other side effects of the treatment. He is pretty tired as his blood counts are still low but the V.A. in Iowa City is ready to give him fresh platelets as they see fit. Things are wearing on him pretty good these days. Keep your chin up dad! We miss you and love you very much!!!

Applebee's, grandkids and sweet freedom.

Well the big news right now if that dad has been released from the University of Iowa Hospitals and is resting in Tiffin, IA until his next round of treatment. On Saturday he got his last drug on the schedule for Course A as well as some more platelets. Also Ron and Nat stopped by the hospital with the kids on their way to Des Moines. It had been a long time since they had seen Poppy. Today I talked to them and they were coming back from running errands and getting some Applebees take out for lunch. Sounds like dad is enjoying the chance to eat some real food for a change. Overall dad is doing good.

Right now the daily routine will include running over to the V.A. center in Coralville to get a blood test Mon/Wed/Fri and then possibly get some more blood transfusions based on what the Oncology and Hemotology departments determine from his blood draws. Also the doctors have told dad to just take it easy and rest up for course B of his alternating chemotherapy treatments.

The pictures included in this entry are for dad to see how things look around the house in Orion. I'll be glad when he gets back to Orion so he can tell me what is a flower and what is a weed in his expansive flower gardens. Until next time...

Ed

Getting ready for the big move

First off, dad is doing OK. Some things are starting to annoy him like the constant checking of his vitals along with some other things associated with a prolonged hospital stay. He is also experiencing some fatigue and other side affects as mentioned in previous posts. Today marks two full weeks out at Iowa City and some things are starting to wear on him. I did hear that Pastor Mike came out with a small contingent from St. Paul Lutheran Church in Orion to collect some offering money that dad had been pocketing for the past few weeks.

Saturday mom and dad are hopefully moving into their new digs, see previous posts about Michael and Chris. Dad is orchestrating the move from his remote location, you can take the manager out of the office but never the manager out of the man. Well that should take care of today's update. Thanks again to everybody for the support so far!!!

Ed

Count Farwell feasts again.

Well dad got his thirst for blood quenched again with two more units of red blood cells. Pretty much the big activity for him today. Everything is still five by five. Mom got to have a mental health day back home in preparation of the extended stay in Iowa City starting maybe this Saturday.

In other news dad got to see Carol Nicholson yesterday as she was out at the hospital welcoming her new grand daughter into the world. Ashley Nicholson (I hope I spelled her name right, dad didn't have that level of detail for me) and her mom, Rachel are doing fine. Congratulations to the whole family!!

I might run silent for a couple of days if there is nothing major to report. Dad has one more dose of chemotherapy this Saturday and then will start up Course B sometime around May 27th. Thanks again to everybody that has offered kind words, kept us in their prayers, lent us a hand or offered support.

Eddie

Catch up

I didn't get a chance to post an evening update last night so here we go a couple hours late. Dad got a couple bags of platelets yesterday in preparation for his spinal tap. This is the second one he's had with many more to come. They take out a small quantity of fluid and replace it with a drug. The first one was Methatrexate and this one was Ara-C. He came through the procedure just fine. He's also completely off the I.V. fluids. He is starting to experience some chemotherapy side effects - food isn't tasting all that great, little bit of nausea and some bouts of the sleepies. Overall the doctors out there are pleased with how he is handling this first phase of the Hyper CVAD.

I mentioned in an earlier post that dad needs to stay close to Iowa City between the first two rounds of chemotherapy. Michael and his wife Chris (Mom's brother's middle son, our cousin) live in Iowa City and have volunteered the use of their basement so that Mom and Dad can have a place to stay from this Saturday (potentially) until around the 27th of May when he goes back to the same unit at the hospital for Course B of his treatment. A very big THANK YOU goes out to the two of them for doing this.

Ed

Still holding steady

Sounds like everything is still the same from yesterday. Dad's got a spinal tap on the card for today and they are going to see about infusing some more platelets before the procedure.

Ed

We'll be happy with boring updates

Nothing new to report tonight. Outside of dad's I.V. pump being "possessed", today was a good day out in Iowa City according to an internal source.

In other news...yesterday three little helpers came out to Grandma and Grandpa's house to help plant a new flower garden. Afterwards they got to talk to Poppy on the phone and consume copious amounts of junk food.

Five bells and all is good

Nothing major to report this morning folks. Dad's overall spirit is very high and he sounds good on the phone. We'll report again during the dog watch

Eddie

Holding steady

Just got off the phone with Dad and got the morning update. He is doing good. He has gotten rid of a couple extraneous pumps and IV bags from the Christmas tree as well. Mom and him along with the doctors are going to start working on the lodging situation over the next few weeks. One of the biggest concerns during chemotherapy treatment is the onset of a fever as a result of the body's suppressed immune system as well as how quickly that fever can be treated. Strategically placing dad in a location that allows for quick response and availability of services is very important. There are options out in Iowa City, back in the Quad Cities and possibly back home.

Yesterday Ron, Nat and Mom went out for a visit during the afternoon, Rachel and I got out there right around dinner time. Our cousin Michael and his wife Chris also stopped by, they both work for the MRI department at the University of Iowa Hospitals and gave us a little tour of where they work. Dad enjoyed getting out of his room and away from the unit that has been his home for the past four days.

Happy Mothers day to everybody!!

Ed

Cast of Characters

It's dawned on me that some people might not be current on the family members. If you look at the picture at the top of the blog I'll go through everybody. Back Row from left to right: Dad, Mom, Natalie (Ronnie's wife), Ronnie, Ed and Rachel (Ed's fiance). Front row left to right: Courtney, Olivia and Dean (Ron and Nat's kids).

Mom and dad still live the retired life in Orion (although dad has temporary residency in Iowa right now). Ron and Nat live outside of Orion where he works for John Deere and Natalie is involved with the church, the kids and a multitude of other activities. Ed and Rachel live in Hampton, IL where they both work for the Department of Defense and are planning a November wedding.

Still going...

As you can tell from the schedule we posted earlier, today will be the fourth consequetive day of chemotherapy and then dad will have a break for a couple of days. He's done a great job so far of getting through things. He had a little bit too much fluid pumped into him the past few days. He noticed his feet were swollen and they found he gained 10 pounds pretty much overnight. The staff in the unit took action immediately and commenced "Action Number One" to get 4 liters (about a gallon) out of him through natural methods (they gave him something to make him go to the bathroom - a lot). A.N.O. was deemed mission accomplished around 6pm last night. I only share this because as mom will tell you, this is just a small example of how well prepared and trained the staff is in the unit treating dad. No matter what the issue is they are ready to tackle it.

The outpouring of support from everybody has been great. Mom and dad have been getting emails, cards and phone calls from a lot of people offering praise and good wishes. Remember to keep Natalies' mom Karen and our good friend Larry in your thoughts as well.

Ed

Chemistry lesson for the day

After talking to dad a couple times this morning he wanted me to post his chemotherapy schedule for this first course of treatment so here goes. We'll start from the beginning to catch up.

Day 1 - May 6th: Cytoxan in the evening
Day 2 - May 7th: Cytoxan in the morning, IT Methotrexate PM (spinal tap procedure), Cytoxan again in the evening
Day 3 - May 8th: Cytoxan in the morning, Cytoxan in the evening
Day 4 - May 9th: Cytoxan in the morning, Doxorubicin and Vincristine in the evening
Day 7 - May 12th: IT Ara-C
Day 11 - May 16th: Vincristine

That is about it for me on this one. Heading out to Orion to perform my groundskeeper duties.

Eddie

"Dad Cell Calling"

Two days in a row now that I've got to talk to dad directly on the cell phone to get the status update. He sounds good for all that took place yesterday afternoon and throughout the evening. They gave him some platelets and a blood transfusion. Sleep was a little difficult because of all the commotion apparently. He's got another treatment session this morning but has already taken a shower and ordered breakfast and is ready to face the day.

Ed

Blogging 101

Welcome to the afternoon update! Dad made it through a spinal tap this afternoon where they draw off some spinal fluid and administer a dose of medication at the same time. Mom said his spirits are up which is awesome.

I guess we've got some newbies amongst the readers of this blog who need some help on figuring this interweb thing out. Here is some help...

First please sign up to be a follower of the blog by clicking on the "Follow Blog" button way up at the very top of the web page. You will be able to sign up using a google, AIM or Yahoo account. If you don't have any of those then you will be prompted to sign up for FREE account in order to be a follower. You will then be able to upload a picture to your account and dad will be able to see all the people that are following his progress. Those aren't exactly step by step directions but should be enough to get even a novice up and going.

Right now it will just be Dad, Mom, Ronnie or myself that will make the posts to update. Anyone who signs up for an account will be allowed to make comments on the posts. As of now we haven't found a good "guestbook" format that allows people to post quick notes of encouragement like you may have seen on carepages or other things of this nature. Stay tuned to see what we work up.

Ed

The first drug is in

Good morning all. Just talked to Dad and Mom. Dad got his first drug of this chemotherapy course last night - we've officially started the journey. He's also happy because they let him order whatever he wants for food. At the VA meals were a surprise everytime he opened up the containers. Last night he had a peanut butter and jelly sandwich for dinner. I think he told me he will be getting another dose of something this morning for the next part of this round of treatment. Say a little prayer, think happy thoughts I think it's helping mom and dad out.

Eddie

Let's get it going already

Ronnie and Mom have been out in Iowa City all day with Dad. He has moved into his new digs at the University of Iowa Hospital, has his PICC line in place and is getting ready to start his first phase of chemotherapy sometime tonight. From here on out I'm not going to use that word's knickname because people tend to focus on the first half and not the second. I talked to Mom around 5:45pm tonight and they were going to have another meeting with the doctor to discuss things regarding the treatment schedule. For those of you that have been itching to play Dr. Google on the internet here is some more information to look up regarding his treatment regiment. They are going to start him on what is known as the Hyper CVAD regimen. As I posted earlier they will keep him out there after the first phase to monitor him to see how he is handling the drugs. That is about all I can think of right now. Thanks to everybody that has sent cards to the house in Orion, I am going to get them to Ronnie so he can take them to Mom and Dad tomorrow along with the message Dad got from the US Census Bureau offering him an administrative job in Peoria, IL.

Good luck tonight Dad as you start getting better!!!!

Eddie

The new news

Dad will be moving to the University of Iowa Hospital tomorrow morning for the duration of this hospital event. He is scheduled to get a couple units of platelets and a PICC line installed. The PICC line will be a welcome addition to dad's treatment as I about passed out watching a guy trying to find a vein in dad's arm tonight amid a sea of purple bruises from all the blood draws this past month.

We found out today that dad has a rare more aggressive form of Lymphoma that is going to require an intensive chemotherapy treatment. All things are pointing to an acute onset of this cancer in his body, potentially it first presented itself just 6 weeks ago. When he finally makes it to the University hospital he will be in the bone marrow unit as they have specially trained staff that deal with the kind of treatment he will be undergoing. Right now the regiment will start out with 5 days of drugs followed by at least a week of monitoring. He'll also probably be getting blood transfusions on a regular basis while in the hospital. After that he will return to Iowa City for possibly 7 more alternating courses of treatment. They have an alternate course or regiment they can try if this first one proves to be too much for his body to take.

For as much as he's gone through in such a short time he is doing remarkably well. His still has a very positive outlook on things and has developed the power to bring grown men to tears with a single look or simple word. If you have A+ or O+ blood type the next time you donate you just might be helping a very good man back on the road to good health.

Crap

Got a call from mom today and things have changed. Dad got a little different diagnosis this morning that is going to result in a more agressive treatment. As of now they are going to move him over to the University of Iowa Hospital instead of the V.A. Hospital for treatment. I'll try to fill in the blanks as best I can over the next day or so.

Ed

Good bad news

OK just got a call from Natalie.

Dad has Lymphoma which is the good news albeit the worst good news you could ever imagine hearing.

It is Stage IV diffused large B-cell non-Hodgkins. I'll leave the google work to you. They found cancerous cells in his spleen and in his bone marrow. He is starting his first chemotherapy treatment tomorrow which will last 5 days - two days on an I.V. and then three with oral medications. He's already been told to expect the loss of his hair and to experience the nausea associated with chemo. Hopefully after a few treatments the spleen will be irradiated and he won't have to have that removed. With his blood counts being low they won't perform surgery on him anyway. After this initial round of treatment he's hoping to get home and take over from me on the blog (which is fine, I'll have much more fun mowing their yard while he's inside typing). The outlook right now is as best as we can expect, all things considered.

Along these same lines I have to mention that Natalie's mom, Karen as well as a good family friend of ours, Larry also have Lymphoma. It is said there is strength in numbers and between the three families we're packing some serious horsepower. Never will the path from patient to survivor be void of a loving hand or guiding light for these three.

Ed

Still Waiting

Still haven't heard anything from the frontline. Mom and Natalie are out there with dad while Ronnie and I sit at work waiting for any bit of information. Will update as soon as we find out anything and have time to digest.

Ed

Where to start...

Hello all. We're taking a cue from the Carroll family and starting a blog that we can use to spread the word about what is happening with dad on a regular basis. Before I get too far along I should probably get everybody up to speed (well as best I can, I'm an engineer not a doctor).

In early April dad got to spend his first night, ever, in a hospital. He had some chest pains one day and after some poking, prodding and measuring they determined his heart was OK but his blood sugar was very high. Dad has been taking oral medication for diabetes for a while now and was recently put on the infamous Prednisone for a muscle condition and as we found out is really good at raising blood sugar levels. After that first hospital stay we thought maybe his blood sugar was causing his problems. About two weeks later dad got to take another trip to the emergency room while experiencing some back pain and over all "not good" feelings. Early on in that visit they found his platelet counts to be very low and therefore gave him a couple units of blood and some fresh platelets. The Veterans Affairs hospital called the doctors here Rock Island and told them to take dad off of one of his medications that could possibly lower his blood counts. After three nights making sure things were stabilizing he was back home. During the week of April 27, 2009 he started making the rounds between the VA clinic in Bettendorf, IA and Iowa City for some tests and more poking and drawing and testing and poking and looking. On Thursday, April 30th the VA clinic in Iowa City saw some things on a bone scan from earlier in the week that they didn't like and had him come back out that afternoon for some more tests and to be admitted into the VA hospital. The doctors sort of prepared us for some bad news, we just didn't know how bad. Friday, May 1st, 2009 we got the news that dad may have some sort of cancer along the lines of Lymphoma, Leukemia or Mieloma. Bad news indeed but we still didn't know the level of crappiness.

Monday, May 4th, 2009 dad should be getting the results of his tests and we will know the name of the something that has been making him sick. The doctor talked of starting his treatment once we know what it is we're up against. They've already started him on a new regiment of drugs to prepare his body.

So for the next 24 hours we're still in a waiting pattern. I'll be updating the blog until dad gets out of the hospital and back home. For now his blood counts are low enough that we're asking that visitors be limited to the immediate family so we don't run the risk of him getting an infection. If you've been to Mexico in the past year stay away from Iowa and Illinois please. Also we can't use cell phones up in dad's room due too all of the fancy monitors and things so if you call one of our cell phones it might take us a bit to get back to you. Think happy thoughts everybody.

Eddie