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