John's progress

Haiti

2010-10-29T16:24:00.002-05:00

My reason for posting today is to highlight an upcoming event.

www.worldwidevillage.org/festival-for-haiti-2010

My dad was involved with this non-profit group called World Wide Village, which he served while being on the board of directors. During this year’s festival, where they raise money for Haiti, my dad is being recognized for his contributions to World Wide Village. My wife and I will be attending and you are warmly welcome to join us in supporting a good cause.

On a personal note, it's hard to believe that it has been nearly two and a half months since my dad passed. Everyone is well, all things considered.

Obituary

2010-08-14T15:06:00.002-05:00

John Phillip Nicholson
(December 31st, 1951 - August 14, 2010)

Age 58 of Shoreview. Died August 14, 2010. Preceded in death by his father, John A. Survived by his adoring wife, Caren; children, Adam (Melissa) and Jamie (Travis), Aaron (Laura) Chaney and Kyle Chaney; grandchildren, John, Noah and Berea; mother, Norma “Mimi”; siblings, Pam (Butch) Niven, Tim (Karen), Jeff (Elizabeth); nieces and nephews. John loved serving the Lord and using his gifts and talents to further the Kingdom.

Gathering 4-7PM Tuesday, August 17 at HOLCOMB-HENRY-BOOM-PURCELL, 515 Hwy 96 at Mackubin, Shoreview (651-482-7606).

Memorial service 3PM Wednesday at FIVE OAKS COMMUNITY CHURCH, 4416 Radio Drive, Woodbury.

Private interment Fort Snelling.

Memorials to enCompass Church

Link to the online obituary

With the Lord

2010-08-14T02:21:00.000-05:00

John Phillip Nicholson left his earthly body and went home to the Lord at 2:00am this morning.

He left while surrounded by family including his wife Caren, myself, and his daughter Jamie. He is loved, and missed.

Godspeed, dad, enjoy the party in heaven. I will see you soon.

Love your son,

Adam

- Posted from a mobile device

Bible

2010-08-13T20:47:00.000-05:00

Psalms 16:7-11
I will bless the LORD, who hath given me counsel: my reins also instruct me in the night seasons. I have set the LORD always before me: because he is at my right hand, I shall not be moved. Therefore my heart is glad, and my glory rejoiceth: my flesh also shall rest in hope. For thou wilt not leave my soul in hell; neither wilt thou suffer thine Holy One to see corruption. Thou wilt shew me the path of life: in thy presence is fulness of joy; at thy right hand there are pleasures for evermore.

We've been reading today to John out his personal Bible. In his Bible he has highlighted many passages that he deemed as key/noteworthy. The above passage was one of those.

It's been a long day today... so far. Lots of emotion. Two different times we thought he was passing which is hard to recover from.

He still fighting, only God knows when.

Adam

- Posted from a mobile device

Another day

2010-08-13T06:46:00.000-05:00

Yesterday there were a lot of visitors again which was nice. So many people have nice words and memories to share.

John continues to shut down. This morning, as was late yesterday, his body is having a hard time regulating it's body temperature. We continue to keep an eye on him and adjust the blankets on him as needed.

I'm not sure if he can feel anything in his body anymore and he doesn't move or squeeze his hand. If you rub the bottom of his feet, which are ticklish there is no response.

He breathing is also more labored than early yesterday.

I know for me, although I'm not "ready" for him to pass, I am ready. Seeing him lay here with his body shutting down just doesn't seem like the right way to go. For now whispering various Psalms into his ear will have to suffice.

Adam

- Posted from a mobile device

Nothing new

2010-08-12T17:29:00.000-05:00

Today is a lot of the same as yesterday with some minor exceptions. He has been taking less pain medication and his breathing has deepened. If he weren't sick, you'd think we was just sleeping all day. Sadly I think it's him slipping to a point where being able to have conscience responses with others isn't possible.

Last night we had guests till around 9pm and had a good time reminiscing tales of Johns life. We're making the best of the situation and I think dad would be a little mad that we are not sharing our wine with him. :)

Adam

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New blog visitor info

2010-08-12T08:46:00.003-05:00

I've been looking at the statistics and visitor tracking data on this site and can see that there are quite a few new visitors. Here are a few links to some prior posts that will help you see where he has been, information on the cancer he has (Stage 4 Glioblastoma Multiforme - or GBM), and how things have progressed.

How it started: http://prayersforjohn.blogspot.com/2009/11/what-happened-short-version.html

What he has: http://prayersforjohn.blogspot.com/2009/11/surgeon.html

Pre-surgery two: http://prayersforjohn.blogspot.com/2010/06/now-and-then.html

Feel free to browse the archive links on the right side of the page to see any of the previous posts.

Peace

2010-08-11T22:34:00.000-05:00

First off I'd want to appoligize to anyone reading this that is finding it too graphic. I've been very cognizant of the readership and am trying to walk a fine line between vagueness of the situation and too much detail. Unfortunately as things get worse each post will become harder to read, including this one. Also, I have decided not to post any more pictures as I feel they may be overwhelming. Thanks in advance for your understanding.

Day one at home is winding down. There have a number of friend and family that swung by which was very nice. A few folks even dropped off some goodies which were graciously accepted - then devoured.

In the morning will be his third day of no food or water which is common when the body is shutting down. John continues to be cared for with frequent meds being administered, being repositioned, people talking to him and of course the occasional Bible passage being read to him.

Tonight there are only a few of us here (I'm spending the night) and we are taking shifts (kind of) to make sure someone is keeping him company. Hopefully we all get some rest; I know we need it. It seems that heavy hearts don't sleep well.

Adam

- Posted from a mobile device

Home

2010-08-11T13:15:00.000-05:00

He as arrived home in from the hospital thanks to a ride from a United ambulance.

Caren is welcoming friends and family that want to come by for a last visit. Feel free to email me for that info at:

nicholi518 at gmail dot com

His temp had dropped to 95 degrees and his O2 levels are also lower. He does appear comfortable and is getting drugs for any pain.

Adam

- Posted from a mobile device

Post comments

2010-08-10T16:54:00.001-05:00

Just a refresher, all of the comments anyone leaves on the posts come to me. I then forward them onto Caren when relevant.

If I don't email you back it's not that I didn't see your post or don't receive them. All of them are appreciated and I will try to reply when I can.

Thanks also for the feedback; we appreciate all of it. It's very overwhelming the support we have been getting through the blog, visits, phone calls, email and prayer. Thanks again!!

God bless,

Adam

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Last steps

2010-08-10T16:10:00.000-05:00

Romans 14:7-9
7 None of us lives to himself, and none of us dies to himself. 8 If we live, we live to the Lord, and if we die, we die to the Lord; so then, whether we live or whether we die, we are the Lord's. 9 For to this end Christ died and lived again, that he might be Lord both of the dead and of the living

Today John is doing worse, more so than normal. His kidney continue to fails further and his health continues to fade. Just looking at him you can see he's extremely fatigued. His body is losing the war against this cancer and we have reached a fork in the road.

We have met with the doctors and have come to an agreement that the best thing for him is to get him out of the hospital and headed home. While home he will be able to be more at peace in a familiar environment. Hospice care is being setup and should be starting tomorrow some time.

We always knew these days were coming... and now they are here. Thanks to everyone for your continued prayers and unacknowledged behind the scenes support.

Awake

2010-08-09T14:42:00.000-05:00

They took him off the ventilator this morning and woke him up... all of which are good signs of recovery.

The not so good news is his kidneys aren't working and are in "failure". To my surprise the doctors are saying it's too really early to worry about because they can still come back and to a "non-failure" state.

Not being around hospitals much, it's interesting that some of the tougher drugs are kept locked up, even when they are being administered.

Adam

- Posted from a mobile device

Location:Smith Ave N,St Paul,United States

Update

2010-08-08T09:43:00.002-05:00

First, let me apologize for taking such an extended break between updates. At times I thought of posting, but there is a fine line between relevant updates to hundreds of blog following friends and family and documenting someone elses life day by day - when it isn't my life to broadcast and most days is very uneventful.

Since I last posted, much has happened.

His strength has been slowly zapped. Through the combination of lack of exercise, endless fatigue, the steroids (which "eat" muscle) that he's taking because of the cancer; he has progressed from walking on his own, to casually using a cane, to needing a cane, to using a walker. He needs a lot of help from others for day to day tasks that healthy people take so easily for granted.

The bigger news:

As I type John is back in the hospital for a second time in just over 2 weeks. A few weeks ago we noticed some swelling on the side of his head near his incision. He went in, they did some scans and determined no surgery was going to be needed and that some antibiotics would clear up the infection. A day later he went home and the drugs were being administered by Caren. All seemed good.

Fast-forward to last night, 6pm. His breathing of late has been very labored and after a discussion he was brought down to the ER to be evaluated. It was found that his O2 levels were in the low 80's (should be 95% or up), his heart beat was irregular, he was running a 103 degree fever, and he has pneumonia. They sedated and intubated him and were able to clean out a lot of the fluid in his lungs. They began giving him some very strong antibiotics that are to fix most of those issues - if pneumonia is the cause of all of them. As for a correlation between the infection and pneumonia, early expert medical options are of the belief that these are unrelated.

This morning he is stable and in much better condition then he was 12 hours ago. His temperature is gone and they've turned down his oxygen - all good signs of healing.

I will post more as I know.

As always, thanks for your continued support and prayers.

- Adam

Mama, I'm coming...

2010-06-18T13:00:00.001-05:00

Home.

Tonight he dines at home with Caren.

Adam

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Up

2010-06-17T18:05:00.001-05:00

Moved floors up to 7. Quieter, better view and a larger room. If all goes well, in 24 hours we can blow this taco stand.

The food however is getting progressivly worse. Today's meatloaf looked like day old canned cat food. We decided to take matters into our own hands - Papa Johns is in route with a XL and cheese sticks.

Adam

- Posted from a mobile device

Location:St Clair Ave,St Paul,United States

Hair

2010-06-17T14:53:00.001-05:00

More good news... the latest procedure appears to have reversed his hair loss. Not sure though, you be the judge.

He also has a new passion for country music.

Adam

- Posted from a mobile device

Sleep

2010-06-17T14:30:00.001-05:00

Last night he had a rough night.
The kept putting a nebulizer on his face, which he kept throwing across the room. Being in the ICU, the noise doesn't subside at night which kept him awake. Seems like all the staff in the room this morning was aware of his "heightened excitement".

They got him up and walking today with a walker and he even did some stairs!

They're going to be moving him today up a few floors and possibly discharging tomorrow!

It's pretty remarkable the rate of recovery this time around. He's stronger than he was a week ago already, he seems a lot more chipper and his swelling has gone done. I'm really wondering why it's going so much better - mental prep? Prayer? Support? I'm choosing to believe it's all of the above.

Adam

- Posted from a mobile device

Location:Interstate 35E,St Paul,United States

Sitting

2010-06-16T19:41:00.001-05:00

More baby steps today. Up 3 times standing, spent a couple of hours out of bed in a chair, ate solids and of course had a cookie dough blizzard.

It seems like every hour he's getting stronger. They said if a room were available they would have us up a few floors for therapy.

On the outside of the room they have these signs warning about the patient having had Chimo. Because of this they use special gloves when they work with him. I asked "why do you wear the special gloves"? The nurse said "it's to protect ourselves from catching anything, because of the chemo". I asked, "Why, would that be bad?". She thought for a moment and replied "yea, and and it's for our safety and hers" pointing to other nurse whose pregnant. I then followed up with "Well what about me or Caren? She's been living wih him and I've been in the room all day". She paused, then blamed protocol. I couldn't help but chuckle.

Adam

- Posted from a mobile device

Location:Interstate 35E,St Paul,United States

Risen

2010-06-16T15:04:00.001-05:00

They took his turban bandaging off this morning along with some of his lines from the surgery.

They got him up, out of bed twice so far today. He even got as far as standing and marching in place. His reward? Ice cream. Life is good.

Adam

- Posted from a mobile device

Location:Interstate 35E,St Paul,United States

Chips

2010-06-16T11:30:00.001-05:00

Late yesterday before I left he got his first oral anything - some ice chips along with a few mL's of water.

This morning he's a little more chipper and is asking questions of us between his cat naps. There is talk in the air that he may get out of bed today and into a chair - and out of the ICU... the one of many baby steps.

Adam

- Posted from a mobile device

Location:Interstate 35E,St Paul,United States

Slow day

2010-06-15T16:18:00.001-05:00

It's been a slow day today. Lots of rest and recovery. He's had a little fluid in his lungs which is expected. In the next 24 or so his lungs should open up and be clear.

Adam

- Posted from a mobile device

Location:N Smith Ave,St Paul,United States

Sleeping

2010-06-15T11:07:00.001-05:00

Lots of drugs, lots of naps... repeat.

This morning he continues to sleep between nurse checks and drug doses. He looks better than yesterday but still has the expected swelling. I think like last time we will be doing a lot of waiting until he regains some strength. He can talk and has all of his cognitive functions which is good. Hopefully in the next day or so we can have a little more two way communication.

Adam

- Posted from a mobile device

Location:Interstate 35E,St Paul,United States

Night

2010-06-14T19:52:00.000-05:00

The last of us are heading home for the evening. Thanks to everyone that has been praying and offering support in various ways. It's been a long day. Please pray for healing, pain relief, comfort and rest. God bless and good night.

Adam

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Post-op visit

2010-06-14T19:13:00.002-05:00

We were able to get in and see him. His eyes are open, he's responsive, able to squeeze hands, but definitely still sedated. He is on a CPAP which helps to breath deep. We are looking forward to the morning already where he should be able to communicate.

A special thanks to Dwayne - thank you for your generosity while hanging out in the waiting room!

Adam

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Movin'

2010-06-14T18:04:00.001-05:00

Up to the ICU! We should be able to see him in 15 minutes once he gets situated.

Adam

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Closed

2010-06-14T16:01:00.001-05:00

He is closed up and heading to recovery. The cyst is gone and 90+ percent of the tumor.

Wow. How a day can swing.

Thanks for the continued prayers.

Adam

- Posted from a mobile device

Big change!

2010-06-14T14:55:00.002-05:00

The surgeon came in with an update.

They tried two plugs and they couldn't get the fluid from inside the cyst to come through it because it was too thick. They then tried to endoscopically to remove the cyst, which also didn't work. She then decided the bleeding was under control enough (he had a transfusion) that she could open him up. She went in and was able to take out the cyst fully, cauterize the tissue in that area and then take out more tumor.

The bad news is the recovery is now back to a week or more, which was the original plan when the day began.

He's currently undergoing another MRI and when they get the results back they will either take more out or close him up.

Well, now we know what the delay was. In my opinion it's really best case. The plug is no longer needed and they got more tumor out.

Adam

- Posted from a mobile device

Update

2010-06-14T13:33:00.002-05:00

Well, looks like my estimate was wrong. Goes to show you how much longer things take around here. Rush, rush, rush... waaaaaaaaaaiiiiiiiiiiiiit, wwwaaaaaaaaiiiiiiiiiit, wwwwwaaaaaaiiiiiiiiiiiiit.

The crowd continues to grow.

Adam

- Posted from a mobile device

Non-update update

2010-06-14T12:44:00.001-05:00

Just waiting... here.

Adam

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Scanning

2010-06-14T10:28:00.001-05:00

The plug is in and the cyst is drained. He's being sutchered now and then having another MRI. In 2 hours I'm guessing he will be out.

Adam

- Posted from a mobile device

Time

2010-06-14T10:02:00.001-05:00

Surgery time went from 12+ hours to maybe 2 because of the change in scope.

We're getting more people here in the waiting area.

Adam

- Posted from a mobile device

Surgeon

2010-06-14T09:19:00.001-05:00

Last time the surgeon was Dr. Greggory. Well, he's on vacation so his boss is doing the surgery.

Please keep Dr. Dunn in your prayers.

Adam

- Posted from a mobile device

Update

2010-06-14T09:06:00.002-05:00

The surgeon came out not too long ago. His platelets aren't doing their job when they put his central line in (blood isn't clotting well). She thinks they might change the approach on the surgery and not try to take out more tumor and only focus on the cyst. Everyone is on board with this decision - it's the best for John and poses less risk.

Adam

- Posted from a mobile device

Under

2010-06-14T08:05:00.001-05:00

We just left John in his pre-op room. He should in surgery in the next hour or so.

Adam

- Posted from a mobile device

Tomorrow

2010-06-13T22:14:00.002-05:00

Tomorrow is the big day. His surgery starts at 730 in the morning and will go 12 hours or so. He is heading to pre-op at 530am and I plan on arriving around 6. Please keep everyone in prayer, including the surgeon, staff, family, friends and of course, John.

Wow, seems eerily familiar.... http://prayersforjohn.blogspot.com/2009/11/tomorrow.html

- Adam

Group prayer

2010-06-13T19:30:00.002-05:00

I got to take part in a prayer group today for my dad at his house. He's so fortunate to be a part of a church like Encompass. It's small enough that everyone knows everyone, and because of the "small town feel", you can really see the passion and care that everyone has for each other. Thanks, Kevin, for leading!

Adam

- Posted from a mobile device

Portacath

2010-06-11T23:01:00.003-05:00

John's first stint in the hospital and all his subsequent doctor visits have turned him into a human pin cushion. The top of his hands always have a little hit of purple to them thanks to all the lab work that's been drawn. So, now John has his very own portacath which was surgically implanted on June 8th. Having this will allow him to no longer have his hands tied up and it will give the nurses the advantage of being able to get meds to him and into his blood stream faster.

More info on a portacath can be found here:

http://en.wikipedia.org/wiki/Port_(medical)

The now and then

2010-06-11T22:07:00.004-05:00

As promised, here is a very high level summary as seen by me (Adam).

The past few months have seen there fair share of ups and downs. We've had some good days and bad, happy times and sad. The chemo and radiation is not an easy thing to forgo, but all things considered, John did remarkably well and didn't get too physically sick.

A little less than a month ago John finally had a follow up MRI which revealed that there was a cyst that has formed in his head. A cyst in the brain in case you were wondering is a sphere filled with fluid, similar to a miniature balloon filled with water. This one is isolated in the rear of the area where the tumor was. We were told that getting a cyst after this type of surgery although rare, usually doesn't cause too much worry depending on what its doing. In John's case, we found out that this cyst is pushing against his left brain hemisphere. Because of the pressure it has begun to mess with his motor skills. With all this new information, and after his case being presented it was unanamously recommended that another surgery should be done. This unfortunatly was not what we wanted to hear - as John said he would NEVER go through that again.

About three weeks ago, and after a lot of prayer, a decision was made that he would go through with a second surgery. In this surgery they would drain the cyst and remove as much of it as possible and then place a sort of plug in his skull to allow for future draining. The plug is... well... imagine a cork being stuck in your head. Through this cork someone can take a needle and go through the cork to get into your skull. This is essentially what he is getting. Once it's in, it will sit below the surface of the skin but will allow a doctor access to drain the cyst in the event that it fills back up.

Also shown by the MRI was new growth of the cancer. Although it wasn't entirely expected, it was inevitable. The good news is it has spread only a little and while the surgeon is in his head working on the cyst, he can take out a little bit more of the tumor.

The surgery is set for Monday, June the 14th early in the AM. It is pretty much the exact same surgery as last time.

Please keep John in your prayers, as well as his family. Thanks.

A long time

2010-05-20T19:23:00.001-05:00

It has been quite a while since this blog has last been updated. Since the last post there has been some good news and stories along with some not so good news. In the upcoming days and weeks I'm going to try to post more news and information, both old and new.

As always, prayers are still very much needed and preferred.

- Posted using BlogPress from my iPhone

Radiation almost Done!

2010-02-04T10:05:00.005-06:00

I have just two more radiation treatments and that phase of my treatment will be over with. Although the actual radiation treatment is painless and relatively quick, the side effecte of chronic fatigue is getting very tiresome. Having a total lack of energy is difficult to deal with. To further compound the problem, I found out last week that I am also suffering from hypothyroidism (i.e. the thyroid gland is not producing sufficient amounts of hormone). According to the doctor, his is probably an unrelated condition to my brain cancer, and is easily treatable by taking anoher pill each day, which I began last week. Symptoms of this are also fatigure, so it is understandable on why I have felt so tired. With the radiation ending tomorrow, and his hormone supplement, I am praying my fatigue will disipate in another week or so.

I have another meeting with my oncologist next week to discuss what comes next. I believe the plan is to take a 1 month haitus from the chemo and then restart at double the current dose at the end of 30 days. New imaging will be done in the near future to see what the current state of the cancer is.

I spend most of my day in scripture and prayer. When not doing that, Caren and I continue to run lots of errands each day relating to the building of our new home which we plan on moving into in late March. We are excited about the move and it certainly has proven to be a pleasent distraction from my health issues. We coninue to see small blessings nearly every day in the midset of this 'storm', and remain convinced that if we remain faithful and obedienet, the Kindom will be served through this trial. His transforming power is certainly working in both of us.

Thanks to all for any and all your prayers, they contiue to sustain us. May God richly bless you all.

Love, John and Caren

Update

2010-01-09T09:08:00.002-06:00

I have completed my 3rd week of radiation and chemo treatments, and all is well thus far according to the Doc's. The only side effect I continue to have is a constant fatique (which is very normal and expected side effect of the radiation treatments); but no negatives with the chemo which is a huge Praise to the Lord. In another month, they double the dose of my chemo, and that may be a different story, but for now, the Lord has smoothed out my path. Apparently, the chemo does a number on your bone marrows ability to replace red blood cells, so I am still awaiting the results of some tests taken yesterday on that, but the doctor doesn't seem to worried at this point.

Caren and I were able to spend some time with another couple from church who has a reoccurence of cancer. It was nice to be able to empathize with their situation and pray together for God's provision on us as well as others we know from church undergoing their particular 'storms of life.'

With the fatigue issues, I am usually in bed my 8 or 9 o'clock, and then inevitably wake up at 1 or 2 in the morning. My routine has been to get up and read and/or study scripture for a few hours until I get tired again, and then go back to sleep for a few hours. I then spend most of the morning doing my normal Bible study routine; the best part of my day. I am working hard to memorize more scripture, something I have always stuggled with. The Lord definitely has granted my wish for a thirst, but I admit to having trouble in the memorization. My short term goal is to memorize a minimum of 15 minutes worth (that is how long my radiation treatment lasts). Now, I have to repeat over and over the same few passages I have committed to memory to take up this time plus some power praying.

Thanks again to all for your continued prayers and support, Caren and I are so grateful.

We love you all, John

Update

2009-12-31T10:11:00.002-06:00

Today is my 58th birthday, and I will be receiving the end of my second week chemo and radiation treatment later this afternoon. My current schedule is chemo 7 days per week, radiation Monday through Friday. So far, all the treatments have had no side effects other than fatigue, but no nausea. Praise the Lord for his care and provision.

My days are filled with treatments and doctor visits. When not doing those things, I am trying to get in some exercise on the treadmill and rest. Also doing lots of scripture reading, which I love to do, plus recording in my journal. I just finished re-reading Job, which has proved to be beneficial. I have a lot of peace as I reflect on all that has happened and the new journey that the Lord has me on. I saw an interview on TV of Anne Graham Lotz concerning her new book, 'The Magnificent Obsesssion,' where she talked about Abraham's walk with the Lord being such an inspiration in her personal walk. I ordered a copy immediately and it came yesterday. I have read only the introduction and first chapter thus far, but I think it is going to be a good book.

Caren and I went to our regular Thursday morning prayer session this morning with persons from our church, and as always, it was good for our spirits and soul to pray with others from church. After, we had a nice session with our Pastor Kevin that was much appreciated.

Caren and I remain convinced that their is a purpose in this trial, it is not a case of bad luck; but that somehow and someway, the Kindom will be served though this. We know we serve a loving and compssionate God, and we are part of His plan. We just need to be obedient and put our faith in him.

We continue to ask for your prayers, and I would ask especially for my dear wife Caren who has been such a rock for me through this and continues to stuggle some days with the burden she is carrying. She is such a woman of faith and God, but admits to times of doubt when fighting through this storm of life. Pray for her strength, faith, and peace through this time.

We love all you guys, and will never be able to thank you enough for the ongoing support and prayers. We feel everyone of them.

Love, John

Treatment

2009-12-22T11:24:00.002-06:00

A big day today, my first chemo at 6:45 A.M. sharp this morning followed by my first radiation treatment at 8:45 in Maplewood. I was most nervous about the chemo, seems a lot of persons have a negative reaction, but everything went smooth. 2 Huge 'horse' tablets and a glass of water and your done.

The radiation, at least today, was a non event. They strap you to a table and hold your head under the custom mask they made for me last week. Then this large disk circles around your head zapping you (just some noise, no feeling). I just kept my eyes closed and prayed, so it went well. The machine they use is state-of-art (they focus the bean in all 3 axis so as to hopefully destroy only cancer cells not the good stuff.

Afterwards, I asked the doc if we could review the pictures of my brain so that I had a abetter understanding of what was actually going on. It is kind dof erie to view; especillay my brain that has a huge chunk missing where the main tumor mass was removed. Today's radiation was focused on the edges of this area to kill off lingering cancer cells in that area. This cycle will repeat every week day for the next 5-6 weeks at which time radiation will stop. Chemo will also stop for a while, but restart after a week or so at a higher level, or at least that is the plan now.

Caren and I continue to pray for courage through this time,and praise the Lord for his promises and faithfulness. We also remain so humbled and thankful for His grace and mercy upon us, and for you, our brothers and sisters in Christ.

Merry Christmas to all,

John

Radiation Test

2009-12-21T18:46:00.002-06:00

We went downtown for John's final visit to the neurosurgeon. He has been dismissed from thier care and only to return if he has any issues. He is still taking 2gm salt tablets a day and will be
referred to an endocrinologist to monitor his sodium levels.
The second appointment was at radiation therapy. This was just a practice run to ensure the plan is correct, aiming the radition beam at the right place, etc. Tuesday is the real thing in addition to starting oral chemotherapy.
Its scary but I'm starting to think like John. I put all our appointments in outlook! If I start pulling out graphs and charts, please shake me.
John is realizing these outings are just exhausting so I had him take a nap. The blinds were pulled, took out the phone and shut the door. A short time later, I could hear him snoring. I'm thinking yes, he is sleeping and then his cell phone rings. I was so careful about everything but forgot the cell phone! oh well...despite the cell phone, John was able to get some rest and woke up refreshed just in time to visit with Jamie.
Merry Christmas, Caren

2009-12-18T15:31:00.003-06:00

Friday, December 18 Update

I have now been home from the hospital for 2 weeks and am making slow but steady progress in regaining my strength. It is unbelievable to me the strength and energy that is sapped out from one in undergoing somethink like this. The doctors have told me that it will take a minimum of 6-8 weeks to recover from a surgery like this. I seem to be so tired all the time, and I guess its because all your body energy is going into healing, which leaves you short on energy for anything else. Despite being tired and going to bed early every night, sleep has been challeging. I wake up often my mind thinking about various things. I try and pray myself back to sleep.

Caren and I met with the oncologists this week, and I believe everything went well; at least we got a lot of answers to questions. My first radiation treatment will be next Tuesday, December 22nd. Monday, I had another CAT scan done with dye to help determine the focus of the radiation. Tuesday I had another MRI to merge onto the CAT today. They molded a plaster like goalie mask around my head that they use during the radiation to hit the right spot and keep your head still. All pretty tame stuff, just a few more pokes I didn’t need. There are some possible side effects from the radiation including seizures, possible hearing impairment in my case, possible short temporary memory loss, and fatigue. She also went on and on about hair loss, which I guess is traumatic for some people. Praise the Lord I already crossed that bridge years ago. Chemo will start with radiation next Tuesday as well.

I asked the doc straight up to give me expected outcome, worst case, and best case scenario, from their medical perspective. I know that the Lord may have other plans. The bottom line is that I have GBM stage 4 brain cancer, and the best case scenario is that the radiation will stop its growth. Elimination of this cancer is virtually impossible; to aggressive and buried deep in my brain. She reiterated what a great job Dr. Greggory did in getting 90+%. It sounds like I have a good shot at 1-2 more years. 5 years? Chances are probably less than 20%. She did say they all have patients who for whatever reason beat the odds, so as I said before, it’s in the Lord’s hands, and it doesn’t get any better than that.

I have been trying to do some research also on brain cancer, but have determined that for every one hour I do that I have to spend a minimum of 2 hours in scripture. Not a lot of inspiring reading on brain cancer.

I have gotten back into my normal journaling and bible study routine which has helped immensely. I have started a blessings page in my journal regarding all of this, which is quickly filling up. At the top of the list is Caren, what a wonderful Godly woman, so strong. She is the one who needs prayer, I think this is harder on her than me. Also at the top of the list are my amazing children of whom I am so proud. My family and friends, my church family, and especially Pastor Kevin
also near the top.

Caren and I pray that somehow, someway, the Lord will use this for the good of the Kingdom; that we will be obedient tools in the hand of the master; that his will, not ours, be done.

Thanks to all of you, my brothers and sisters in Christ, for your prayers and support.

Love you all, John

The Mall

2009-12-10T20:23:00.003-06:00

Our last few days have been fairly uneventful. We went to the mall on Tuesday and had lunch. John was exhausted walking around the mall. (Good thing I'm not a big shopper.) One forgets when you're in the hospital how weak you can get on bedrest; however, his balance is probably close to baseline and I don't jump every time he moves. He is going up and down the stairs independently, but I do keep a close eye on him in the snow/ice or unfamiliar surroundings. Have I mentioned the staples are out?
Wednesday we stayed home sitting by the fire reading and drinking tea.
This morning we joined our brothers and sisters in Christ for prayer. What a blessing to be with them as we discussed scripture and prayed.
Monday, John will have a consultation with the radiation oncologist in Maplewood. I'm anticipating he will start his radiation treatments shortly there after. I will keep you informed.
Thank you for all you love and support. Caren

2009-12-08T06:24:00.002-06:00

John had 2 doctor appointments yesterday which ended up being exhausting. The first appointment was follow-up with the primary and the second appointment was at the neurosurg clinic to remove the staples. The incision has healed nicely and the staples came out with an occasional sting.
Adam, Melissa and boys came over last night and we played WII. John uses the WII for balance and exercise. Amazingly, you do break a sweat with that silly thing.
John has started to journal once again. Trying to return to our routine as much as possible.

First Weekend Home

2009-12-07T06:39:00.002-06:00

I've been harassed since I have not kept you updated on John's progress since coming home. I apologize and will try to keep the post updated on a regular basis.
John completed his first weekend home since being discharged from the hospital. In addition to a few visitors, we went on a field trip to Duluth to pick up some craft items from Barbara's Boutique. We were able to worship with our church family on Sunday and watch some football.
John's balance has improved greatly but I am hesitant to let him go too far off on his own without me nearby in case he would stumble. He still tires easily and I'm trying to block out times when he can just rest. He has an occasional headache which is relieved by Tylenol. We are not surprised by this as the doctor told us he would have headaches for about 1-2 weeks post surgery.
As many as you know, John has maintained his sense of humor and keeps me on my toes. We have been going over the events of the last couple of weeks which makes me think I should of kept a time line (you know those administrative types).
John is wondering what good can come of this. Will someone be saved? John and I both agree though this is a difficult time, it is for the Lord's glory.

Caren

Discharged

2009-12-02T07:37:00.001-06:00

Word on the street is, this morning he's being released into the hands of Caren and heading home!

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2009-11-30T16:34:00.002-06:00

John had an exhausting day with OT, PT and Speech therapy putting him through the ringer. Speech therapy worked with cognitive tests and OT works with ADLs (activities of daily living). John did so well they may sign off in the next day or so. He is still a little unsteady on his feet, so PT worked the better half of the session on balance. The doctors, nurses, and therapists will meet tomorrow to determine a discharge date. I am optimistic he will be home by the end of the week.
I was remembering the other day when the Lord promised me a prince (1Samuel 25) and then John came into my life. I love him so much. Caren

Blog analytics

2009-11-29T09:38:00.003-06:00

On Wednesday the 25th I activated some analytics on the blog to see how many people are viewing the blog and where they are coming from - just for fun. Here are some of the results (through yesterday, 4 days worth of data).

The people:
Number of unique visitors that have come to the site: 253
Daily average number of visitors: 150
Average time on site: 1 minute 27 seconds
Total number of web page views: 1,134

Geography:
Number of countries: 2 (USA and New Zealand)
States (in order of most views):

Minnesota
New York
Florida
South Dakota
Ohio
Illinois
California
Alaska
Nevada
Wisconsin
District of Columbia
Missouri
Arizona
Pennsylvania
Iowa
Massachusetts
North Dakota
Colorado

Top 15 cities (in order of most viewed):

Minneapolis, MN
Saint Paul, MN
Circle Pines, MN
South Saint Paul, MN
New York, NY
Hugo, MN
Brandon, SD
Burnsville, MN
Ft. Myers, FL
Rollingstone, MN
Bemidji, MN
Hopkins, MN
Chicago, IL
Munroe Falls, OH
Dilworth, MN

Computer operating system

Windows
Macintosh
iPhone
Linux
iPod

Therapy

2009-11-29T09:12:00.002-06:00

Yesterday in talking with the nurse we got a bit of an understanding as to what his days were going to be like beginning Monday. In the mornings he will get dressed, eat breakfast in the common area (by the nursing station in the middle of the center room), then have his PT (physical therapy). The rest of the time is up to him (sleep, walk, socialize, etc). In the afternoon he has lunch, again in the common area, and then a dose of OT (occupational therapy) which I think is what he needs the most of. Since the surgery (and it was noticable before surgery) we've noticed the tumor seems to have effected his frontal lobe function including spontaneity, initiation and other non-verbal abilities. Having some OT help learning to adapt to these difficulties will be beneficial not only for him, but Caren and the rest of the family.

Visiting update
The nursing staff suggested that if family or friends want to come visit, late afternoon (between 4 and 7) might be the right time. She did mention that once the full time therapy begins he is going to be pretty wiped out. Getting a hold of Caren first might be the best thing before dropping in.

Caren

2009-11-29T08:38:00.000-06:00

Caren will now be posting to the blog since I will be heading back to work. I suspect this will be a nice outlet for her and she will enjoy giving updates on John progress.

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Up to 8

2009-11-28T11:39:00.001-06:00

Today he's been resting/napping the whole time since I've arrived. Earlier this morning John is officially off all his tubes/IV's and has been moved from neuro on 7 up to rehab on 8.

For the first time he has been placed in a double room with an older guy that likes a loud TV. Tonight is supposed to be my night for spending the night but I'm not sure where I can sleep.

The nurses on this floor seem to not know a thing (single room availibility, when PT begins) and are acting boarderline incompetent. I'm hopeful he can get out of here soon.

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Cards and rest

2009-11-27T17:18:00.001-06:00

Today has been another light day with a few visitors so John has been able to rest. He did his first physical therapy session today walking around the nurses station. He made two laps but felt weak which was to be expected. His appitite is still not completely back yet but he is at least on solid foods. There is talk of him being able to go home this weekend yet into Carens care, which he is really looking forward to.

Jamie, Caren and I played card (Uno) this afternoon to pass the time. Jamie apparently like to hold as many cards as possible in her hands at all times. :)

This evening we have been invited to Johns brother (Jeff) house for dinner. We got a "sitter" to stay with John while we are gone to keep him company.

John says thanks for all the thoughts and prayers!

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Two bits

2009-11-27T11:23:00.001-06:00

I brought in my hair shears and cut Johns hair down to a number 2 (1/4 of an inch). It's the shortest his hair as been since he was a kid.

What he doesn't know is I'm invoicing him for $50 for my services.

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Visitors

2009-11-27T09:24:00.001-06:00

See the prior post and visitors are welcome.

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Friday visitors

2009-11-26T18:37:00.001-06:00

I think John will be up for seeing people tomorrow, I'll post in the morning around 9am when I am sure. I'm guessing there will be a fair number so don't be suprised if the room gets busy. It if is busy or if John gets overwhelmed please try to be aware and try to manage your "in-room time".

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Thanksgiving

2009-11-26T17:47:00.000-06:00

So our grandma, aka Mimi, bought a thanksgiving dinner from Rainbow Foods. When I called to pick it up they said it was "precooked and ready to go". I went to go get it today before noon the lady at the deli said it was precooked but in order to eat it needs to go into the oven for two and a quarter hours. With that great news I dropped Jamie off at the hospital and headed back home to prep and cook the food.

(precooked pictures)

About 4 o'clock everything was done. I packed everything up and headed in to the hospital.

When I got in John was in his chair alert, talkative, and in much better shape than yesterday. I dished up some food and everyone ate - and John even had two helpings! It's by far the most he's eaten since before they surgery.

He's been up most of they day and hasn't really taken any naps so he's pretty tired. Right now it's 6:25pm and he's already crawled into bed and drift off to sleep. I think he's going to need it since there seemed to be a bit of interest in all of you blog readers wanting to visit tomorrow.

Jamie is taking a shift sleeping at his side to keep him company tonight giving Caren a much needed break.

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Each day is a gift

2009-11-26T14:32:00.000-06:00

I dropped Jamie off at the hospital while I am preparing some things at home. In talking to Jamie, dad is doing much better today. He's eating a little bit and his pain is more under control.

A unanimous poster reminded us that everyday is a gift. It's such a true statement and it's easy to forget as we busy ourselves in the daily chores of life. I for one am thankful my father has been given a few more.

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Turkey day

2009-11-26T11:09:00.001-06:00

We sure have a lot to be thankful for this year. My dad has had a rough couple of weeks and although he is still in the hospital is able to be with family. More on that coming soon...

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Another days end

2009-11-25T19:57:00.002-06:00

Today has been another day off on and off sleep. His headache seems to be better under control and a constant ice pack on his head certainly seems to help. For us (the imediate family), with John being stable we've actually been able to take some breaks in the evening and get away from hospital and eat out for dinner. A little shout out to our other family members that have joined us at the resturaunt and made that little bit of time away a healthy distraction.

Caren continues to be a trooper watching over John. She also has been helping the nurses keep track what meds he's been on, what's working for him, what different test results have been, etc. Tonight she's even staying the night because he does better with someone around.

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The Jeffersons

2009-11-25T14:31:00.001-06:00

Moving on up!

We just finished moved up to 7. It's actually the same room we were in presurgery. I think John will appreciate the move - it's quieter and a larger room and for the visitors, a better view out the window.

John has had a few visitors today consisting of family and pastors. There hasn't been too much chatting since John has really been trying to sleep.

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Turban

2009-11-25T13:28:00.001-06:00

He doctors decided to take his incision dressing off today, which caught me a little off guard this morning. Earlier in he day they got him out of bed for a few hours into a chair here in the room. He's now back in his bed sleeping as that type of movement is very draining.

One of the nurses said they are waiting for a room to open up on 7 (neuro) and that they are hoping to get him up there later today.

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Headache

2009-11-25T10:45:00.002-06:00

They have been asking John, if 1 is very very mild and 10 is the worst you could possibly have, rate your headache. Before the surgery he said he was a 1. Post surgery he has been a 10.

The good news is late last night they gave him another drug (Dilaudid) which seemed to do the trick. Apparently it's a trial and error type of methodology to determining how to rid the pain. I believe this was their 5th attempt!

A small update: last night he slept really well which I'm sure is exactly what he needed. His appetite has been poor but his fluid intake has been constant.

Visiting update

2009-11-24T17:03:00.001-06:00

Thanks for the requests. At this point he is still really, really fatigued and if everyone comes now he will really be overwhelmed/exhausted. They are looking to move him hopefully tomorrow out of the ICU back up to the neuro floor. So with all the movement plus commotion Caren is thinking Friday might be a good day. Thanks again!

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What's next?

2009-11-24T16:06:00.001-06:00

I've gotten sone questions as to, what is going to happen next? Is he cured? Does he just go home?Is there another surgery? The short answer is, kind of.

What we do know is once he leaves the hospital his incision will have to heal. He should be able to get out of here in a week. Once his head heals in 3-4 weeks he will have radiation and chemo treatments for 6 weeks. Once they're done they will reassess and figure out the next steps.

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Tremors

2009-11-24T13:26:00.001-06:00

I forgot to mention that one of the PT staff came in to do an assessment on how he is going. One of the tests was to hold his arms out and for those 10 seconds there were no tremors! Hopefully that is a sign of a good recovery upcoming!

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Post op

2009-11-24T13:17:00.001-06:00

John looks better today, less swelling and his color is back (not that it wasn't that bad yesterday). He still has a turban on his head and all the needles and lines in him. He has three cups in front of him with Sprite, water and ice chips. The left side of his body is functioning but at a slower pace which isn't out the ordinary. He's been drifting in and out of sleep in-between drinks, conversations and nurse checkups. His headache is still there and they are working on getting the proper drug mixture to help take it down. You can tell he's pretty fatigued today and is in need of his rest.

So far so good.

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This morning

2009-11-24T11:02:00.001-06:00

We have yet to make it in but Caren said she has made it in. John has a splitting headache which oddly enough is pretty rare after this type of surgery. They brought him down for another MRI about a hour ago to see how things look.

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A miracle!

2009-11-23T22:15:00.004-06:00

9:05pm:
We were just able see John in the ICU. At first glance he's not as swollen as I thought and had his head wrapped. Jamie, Caren and I reached out to hold his hand, legs and arms which made him slowly open his eyes (squinting through his swollen eyes). He was able to squeeze our hands and move his arms and legs. He then by the grace of God was able to say all of our names!

We didn't want to stay long and right as we are leaving we got a sign that "John" (and his personality) is going to be ok. He said "So has my hair grown back yet?" (sort of an inside joke) - which was everything we could have asked for.

What a rollercoaster day. Thank you, thank you, thank you from all of us. Your prayers for strength WERE felt!

Praise and thank God for watching over John, for guiding Dr. Greggory, for giving us strength, and for allowing John to live and see more days on this earth.

Now the long road to recovery...

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Visitors on 11/24

2009-11-23T20:08:00.000-06:00

Tomorrow we would like to limit the number of visitors. If possible please refrain from unannounced dropins while he recovers. Thanks for your continued support and prayers.

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Surgeon recap

2009-11-23T19:44:00.001-06:00

The surgery is over. The Dr. Gregory came out and gave everyone in the waiting room all the time we needed to ask questions after he gave us a detailed recap of how things went. In short, he got 90 percent and things looked real good. They then did the fourth MRI and decided they could go in and get a little more out of the tumor out. There were no suprises and John did very well. They were no signs of a stroke so he believes he should be able to move and talk. He did say there is a chance of him not being able to move his left side but only time will tell.

Next: In just over a hour he should be waking up and then they will move him to the ICU for some much needed rest.

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Still stitching

2009-11-23T18:54:00.001-06:00

The surgeon is still at it.

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Stitching

2009-11-23T18:19:00.001-06:00

20 minutes ago they finished and are now stitching him up. In a hour he should be out of surgery and then a hour after that he should be in his room. We don't know yet how everything went.

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Crowd

2009-11-23T17:12:00.001-06:00

Nothing new to report, but the army of well wishers is growing.

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Nothing new to post about

2009-11-23T15:59:00.000-06:00

No news has come.

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MRI #4

2009-11-23T15:05:00.001-06:00

So they are done for the moment. They have taken most of the tumor out and have reached a cross road. The surgeon doesn't know if they are going to close him up or take out more. He has called for another MRI and make a decision based on those results.

The bad news: we have heard that he tumor is malignant, but have yet to hear the surgeon officially state that to us.

Keep the faith and keep sending out prayers!

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No update yet

2009-11-23T14:24:00.001-06:00

Nothing new to report.

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1:05pm

2009-11-23T13:17:00.000-06:00

My wife and I ran into the anesthesiologist in the hallway on our way back from lunch. He said everything was going well. He estimated it was about a third of the way removed.

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12:20

2009-11-23T12:29:00.001-06:00

They are in.

(graphic)

When they took a plate of his skull off the tumor bulged outwards because of all the built up pressure.

So far so good.

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Nothing new

2009-11-23T12:19:00.001-06:00

We continue to sit in the waiting room with no new news.

We're shoehorned into the corner of the room.

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MRI

2009-11-23T11:20:00.000-06:00

We just got news that the reason for the delay was because they had him doing one last MRI. He has now just gone into surgery. The next update we are told will be in a hour to a hour and a half.

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Update?

2009-11-23T11:07:00.000-06:00

We've been told that the surgery still hasn't started and that they are still doing prep work. Some here are comparing it to a carpenter - measure twice, cut once. Sounds good to me!

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No update

2009-11-23T09:27:00.001-06:00

9:30am - No new information.

10:15am - still no new info. Not sure if the surgery is even underway...

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Waiting room

2009-11-23T08:47:00.002-06:00

The waiting room is surprisingly small compared to the amount of active surgeries. There also isn't any cellular or wireless coverage which makes it difficult to get the word out and receive phone calls. I'm going to try to be diligent in getting updates out but please bare with me if there are gaps between posts. Keep praying!

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KO'd

2009-11-23T08:09:00.000-06:00

John is officially knocked out. We got a few moments to see him one past time before he went into the OR. He was in a very light slumber (and was snoring) and vagly responded to loud talking. The nurse said that they expect they'd be in active surgery in about a hour.

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Early morning

2009-11-23T07:51:00.000-06:00

We got to the hospital at 6am this morning and were able to see John in the room. To our suprise there were three pastors already there and were just finishing up a round of prayers. Around 630 John was finally moved to pre-op. It's now 745 and we had to leave for a few minutes while they put some additional lines in him to prep him for the anesthesiologist. We will be able to go see him again in a few minutes before he goes in for the surgery to begin.

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Tomorrow

2009-11-22T22:18:00.001-06:00

So tomorrow is the big day. His surgery starts at 730am and will go till 5 or so we are thinking. He is heading to pre-op at 530am and I will be at the hospital at 6am. It's going to be a long day. Please keep everyone in prayer especially John and the hospital staff.

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Life savers or fruit loops

2009-11-22T18:23:00.001-06:00

Earlier today a technition who is going to be working on a computer during the surgery (overlaying 3D images of all the scans) came in do to some prep work. He placed these round sponge type things on his head that will assist with his early morning cat scan. They look a lot like life savers or fruit loops that are stuck on his head. It reminds me of a one year old child that eats his cereal and gets little messy.

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Outpouring

2009-11-22T16:52:00.001-06:00

We just got a visit from the pastor and a "few" attenders from Encompass church that felt called to pray.

Everyone then huddled in to lay hands and pray. Lots of emotion and the Lords presence was felt.

John says, "Thanks, Caren and I are overwelmed from your prayers, email and support."

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Vikings

2009-11-22T14:20:00.001-06:00

We arrived this afternoon during the Vikings game. It's nice to see my dad in good spirits watching the Vikes take it too Seattle. He seems to be a little distracted though, which isn't suprising knowing tomorrow is the big day. I think we all will feel better once we get past the surgery and know a little bit more. The tention of not knowing and waiting is sure slow and arguious.

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Dr. Richard S. Gregory

2009-11-22T14:11:00.001-06:00

http://www.allina.com/ac/homepgs.nsf/fhomepage/542

Dr. Gregory is the surgeon that will be doing the operation on John. He has over 20 years of experience as a neuro surgeon and comes very highly recommended.

Please pray for Dr. Gregory. Pray he get rest this evening. Pray that his hands will be steady and his mind will be sharp. Pray the God will sustain him during the 10 plus hours of work he will be doing.

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Day five

2009-11-22T11:01:00.001-06:00

John had another rough night last night. If you're thinking of coming to visit please come in the afternoon or call first.

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Commenting

2009-11-21T15:22:00.001-06:00

Just a FYI, I have opened up commenting to everyone so you don't have to register with a bunch of services. Feel free to leave comments; John gets copies of them in his email.

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Day four

2009-11-21T14:36:00.000-06:00

Last night John had a rough night sleeping. It was nothing in particular that caused it, rather a combination of things like new room, the beeping of the IV pump, and of course all the needles. Jamie and I decided to stay home all morning to let him get some rest and arrived early this afternoon. John is in good spirits today and is actually busy showing some folks how to cover some of his church responsibilities on his computer - with the football game on in the background.

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End of the day

2009-11-20T20:43:00.002-06:00

It's the end of the day and John has had so many visitors since this morning I have lost track. Earlier he was given a folder with over 75 printed out e-mails of prayers from people all over, most of which are from people he doesn't know. The prayer responses for him and our family has truly been an amazing blessing. Thanks.

Tomorrow is a pretty slow day, nothing really planned which will be nice. John is looking forward to watching the Notre Dame game tomorrow and getting some rest in preparation for Monday.

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Moving on up

2009-11-20T17:03:00.001-06:00

John is all situated in him new room on the 7th floor. The room is seemingly larger, mostly because of the lack equipment. There are two CCTV cameras in the room so he can be monitored all the time. The view from the room is much improved with a view of the James J Hill house across the way.

It sure looks like a nice day outside. The setting sun is making a nice burnt red color on the low horizon. I guess that means tomorrow is a good day for sailors.

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Moving day

2009-11-20T15:46:00.002-06:00

We've gotten some pleasant news, John is being moved up to the seventh floor which is where the neuro folks are. Very exciting, all we need is for him to get back so the transfer can happen.

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MSI #2

2009-11-20T15:07:00.000-06:00

So after the doctors had some time to evaluate the scan results they needed another run on a MSI. Apparently the testing results had some incomplete parts to it so they just grabbed him and are redoing just a couple parts which should take about a hour and a half.

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