He is at Peace

Conan passed away this morning. (I thought I had posted on the blog earlier, but I forgot to save it.)

Gretta was with him, laying beside him. It was very peaceful.

I will post information about funeral arrangements when I have them.

The Cat Came Back

Seems really off topic, but it's not. (And it's not a Dr. Seuss book)

The last week of October, when Conan's vertigo meant he needed more help than Gretta could give, Conan and Gretta, along with Henry and their dog Squeaker, came to Mom and Dad's house to stay.

Mom's cat does not like Squeaker and she often takes off when he is around. But this time, the cat had not been seen since November 1.

We found her tonight. She is very thin, but her coat is shiny and full. Gretta and Mom cried, and Henry said "I am so happy K.T. came back." And he repeated that throughout the evening.

Gretta had mixed feelings about coming home tonight,  but the nurse thinks we still have a little more time. It was good for her to have something nice happen.

Quiet Morning

Conan's breathing is more labored today and he is not as responsive as he was yesterday. We have told him he put up a good fight but he can rest now.

We want him to know he is loved and will be missed, but Gretta is strong and we will all be here to support and care for her and the kids in the coming years.

Information on Hospice

As our time with Conan comes to an end, here is a link from hospice that we found helpful.

As I type, Gretta is sitting next to him and he is sleeping comfortably. (Snoring a bit too!)

He talked to his dad a bit this morning and he responded to Gretta and his mom this morning, but has otherwise been pretty quiet today. I think he hears most of what we are saying, but it takes too much effort to respond.

We think it will be a matter of days before his body shuts down completely.

We are grateful for the facility here at Cook House. It has provided us with a peaceful and comfortable place to say our goodbyes.

Be Full of Thanks

In the midst of all the worry and sadness this fall, it is still important to take time to be thankful for what we have been given. In our lives we have been given much, but in Conan's fight, he has been given much too.

In these years, he has enjoyed fatherhood and his marriage to Gretta. He has sold a business and started a new job. He has touched the lives of countless children through his soccer and basketball activities.

If you have a special story about Conan and you would like to share it with Gretta, Henry and others, please leave it in a comment or send me an e-mail. I will add them to the blog for everyone to treasure.

These are the things to focus on now. Yes, we are losing him, but at least we had him.

I Think We Have Already Had Our Miracles

I was asked last week if I thought a miracle could save Conan. I gently answered no.

The more I thought on it however, I wondered if we haven't already had our miracle, or maybe more than one.

In 2008 a stage 2/3 tumor was growing and it was large. At one appointment I went to with him, I saw the scans; the oncologist in Moline had a long face and kept wringing her hands. And I didn't understand how he was able to walk or talk; the tumor was so large it had to be blocking brain function. Conan didn't carry a picture of that scan with him and I don't think there were many people that ever saw it. Gretta's sister Jennifer helped him get to Iowa City and the team there said we can do something with this. It was close to home, and offered hope where there had been little.

How many miracles did that year take? What if Conan had never met Gretta? She has a great job with good insurance benefits. She is a wonderful caregiver. The surgeon that operated in Rock Island had a steady hand. Gretta has a sister in Iowa City who was able to help them find a path. During Conan's month of radiation, terrible floods ravaged Iowa City and the surrounding area. Was it the hand of God that kept Conan and his drivers on the road and out of the floodwaters?

In 2010, Gretta and Conan were blessed with the birth of a son. Many of us considered Henry's life a miracle. Henry may have been the spark that helped Conan the next year.

In 2011, there was new growth on the dead marble that was left from three years before. This time, it was considered a stage 4 tumor. It took longer to recovery from surgery, but once again, the cancer was forced to retreat.

And again, a mere human being was digging around in Conan's brain. A doctor can take a piece of the skull out, poke around in the brain and yet not stop your heart or lungs. Was this the miracle? The tumors stayed away for three more years. Maybe this was one more.

In June of this year, Gretta found out she was pregnant. Surely this was a miracle.

In late July of this year we were not so fortunate. Stage 4 cancer is tough to beat -- when it comes back and in three places it is a fierce opponent. And at least one of those places was inoperable. His doctors contacted other cancer centers to see if anyone had something that might be helpful. And when the tumors continued to grow, and began to block the CSF drainage, Conan began to weaken. A possible drug trial was located, but it was only a Stage 1 trial -- a long shot at best; radiation was also proposed, but he was just too weak.

And yet maybe we did get a miracle this year too. Conan fell at their house in October. He could have fallen down the stairs and hit his head. Gretta could have tried to stop his fall injuring herself or the baby. He could have fallen and injured Henry.

There used to be a plaque hanging on the wall at Flannery's house (They are neighbors of Mom and Dad's and my godparents) that I always liked:

Footprints in the Sand.
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was only one.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
The Lord replied, “The times when you have seen only one set of footprints, my child, is when I carried you.”

He has Battled Long and Hard

This is more than I have written other times for a number of reasons. Conan and Gretta are, for the most part, private people. There were many struggles in the past six years that they didn't talk about much and really didn't want to share. And so I tried (and am still trying) to respect that.

Visitors are still welcome -- small groups and for a short time. Sunday, Gretta was in the room when I arrived with Henry. Conan knew right away that Henry was there and reached for him. Henry is too young to understand much of what is going on, but that also means he is not afraid of it. Henry knows that Daddy will not be coming home. We are encouraging him to ask questions and we do not press any long answers on him. (Henry calls the Hospice House Daddy's office -- I suppose hospice and office do sound alike.)

Most people that met Conan didn't know he had such a serious health issue. One of the things he enjoyed most, his time coaching, continued. In the fall of 2008, he coached the HS boys soccer team in the midst of chemo. In 2011 he had surgery in July and was back on the soccer field in about a week. Even in October, less than a week after being told the chemo wasn't working, he traveled with the club soccer team.

But, each surgery has taken a toll on his brain. For the most part, only those with him frequently noticed, but there were little things that indicated brain damage had occurred. Each round of chemo (2 full ones in 2008 and 2011, as well as the partial ones this fall) has damaged his liver and kidneys. It affected his daily health to a degree he rarely shared; he did not want everyone to know just how great a toll this disease had taken.

Conan didn't want his life ruled by cancer and he fought hard to make sure it wasn't. He hid much of his battle from us, but he lived life, doing the things he enjoyed and spending time with the people he loved.

Another Day

Just a reminder to visitors: We do believe Conan can hear everything that is said while you are in the room.

Please tell happy stories in your time with him. I know you are sad, angry, and scared because he is failing, but he needs to hear the love in your voice. He needs to know you will continue to support Gretta and Henry.

This is a very difficult time for everyone involved, but Conan needs to hear that all is well for those he loves.

Visitors Still Welcome, and a word on Gretta

Conan is still aware when people are around, but is not very responsive. Two days ago, when Gretta walked into the room, he greeted her right away, but that isn't what usually happens.  We are still asking that you limit your visit to 10 minutes and 2 people.

Gretta is now 28 weeks pregnant. They found out she was pregnant about 5 weeks before the scan that revealed new tumor growth. Because of her pregnancy history, and her age, this is a high risk pregnancy. During her 22nd week of pregnancy, she was having sharp pains in her abdomen and so her doctor recommended modified bed rest: off her feet as much as possible and home from work.

Gretta has been the force behind Conan's treatments for years, that was a role he was never comfortable taking on. Luckily she is a pharmacist, because who else could keep all the meds straight! While she wasn't the one to drive him to all his appointments (she kept working when ever possible, which maintained insurance benefits, without which they would really be lost), she scheduled appointments and spent countless hours on the phone with doctors, nurses, billing offices, and the insurance company.

And, while it is a goal for Conan to be present for the baby's birth, a higher goal is for Gretta and the baby to be healthy. She can't assist with Conan's care much because she isn't supposed to lift more than 10 lbs., but she is still the one talking with doctors and nurses, and trying to get him to the best place he can be.

So if you see her, make sure she is in a recliner. Ask her if she took time to eat lunch. Get her to laugh.

Keeping him as Comfortable as Possible

Unfortunately, Conan is not eating much and because of this it has become apparent that further cancer treatments are not possible. He will still be offered food and encouraged, but per his wishes, food will not be forced on him.

One of the chaplains we spoke to a few weeks ago said we often try to protect the ones we love. She was actually speaking about Henry and what we could do to help him in the midst of all we are going through. But Gretta and I both thought about Conan and how he was trying to protect those he loved.

In August, just a week or two after the new tumors were discovered, Conan told a friend that this was probably the beginning of the end. He didn't discuss this with others, but he was trying to protect those he loved.

Since the EVT surgery, he seemed afraid to eat, as if he didn't want to vomit again. Gretta said at other times it seemed like he ate only to make her happy.

Now everyone will be doing what they can to keep him comfortable. Short visits with one or two people are still good, but he may or may not be very responsive.

About the Same

Conan is battling nausea once again. 


Friends and family can visit. Please limit your visit to 2 people at a time and 10 minutes. You don't need to wake him up; he's taking some medications to help him rest so he can be comfortable. 

Revised: Low Visitors Today

Unfortunately stomach upset returned Friday evening, so we are asking for visitors to have short visits today as they try to get Conan more comfortable again.

Cook House

Spent an hour with Conan and Gretta this afternoon. Yesterday was mostly about recovering from Wednesday's move.

By yesterday evening, they had his meds squared away and today he was more alert and eating a little bit.

The facility is very nice. There is room to have visitors and space for all to feel confortable.

Tomorrow is Henry's birthday. He will spend some time with Conan and he will have a party with his friends in the afternoon.

Moving Again

Today Conan is being transported to the Clarissa C. Cook Hospice House in Bettendorf.

Primarily they can provide a higher level of care and manage his symptoms better. His vertigo & nausea has been a problem again this week. Their primary care physician met with Gretta & Conan yesterday afternoon and they made a drug plan that should help ease his symptoms.

Once he regains his strength, they are planning to restart cancer treatments.

Changes

Conan's dizziness and nausea were not being well controlled the last few days and he has not made progress in moving around. He needs a higher level of care than is available at the care center.

He is probably going to be moved; they will meet with caregivers tomorrow to make a plan.

Illini Restorative Care Center

Arrived safely. He has a private room and its nice. (from Gretta's text) 

The address is 1455 Hospital Rd, Silvis, IL 61282 if you wish to send a card.

After they get settled in, I will post some information about visitors.

Thursday

9:00 am
Conan is more alert this morning and asked for food. It's amazing how such a little thing brings such relief and makes all of us smile.

1:00 pm
With assistance,  Conan took a short walk late this morning. He has eaten lunch and is getting a shower shortly.

3:30 pm

Conan has a bed reserved at the Illini skilled nursing center. He will probably be transported there tomorrow.

5:00 pm
One more update for today. Conan felt good enough to watch some TV this evening. The room had been dark and silent prior to this.

Baby Steps

Conan had a peaceful night but is still very weak (eating very little and vomiting will do that).

Gretta stayed in Iowa City overnight so she could be here for morning rounds.

The surgery did what it was meant to do, the excess CSF is draining. However the area of the brain where the tumor is located is a nausea center and it takes time for the fluid to drain. The surgeon will recheck in 4 to 6 weeks to see if a permanent shunt is necessary.

We also spoke to the oncologist today and the radiation oncologist last night. Conan's case goes to the board for review and revise next week. He needs to recover from this detour so we can go forward.

Before he leaves the hospital,  he needs to be able to keep food and meds down. He is working on that, but the dizziness is still there and we don't want him to start vomiting again. He has been weakened enough by this ordeal that he will need a transitional care center after the hospital time, before he can go home again.

The social worker has helped us get a list and will arrange transport when it is needed.

Lots of work ahead.

Wait and see

2:30 pm
The nausea restarted overnight and now he is taking a lot of anti nausea meds which send him to sleep. Planning an MRI this afternoon still.

Surgery Today

8:30 am:
Conan was taken in for surgery a few minutes ago.

As the day progressed yesterday (Sunday), it became apparent that Conan would not be able to get to Iowa City in the car safely. He was taken by ambulance Sunday afternoon to Trinity (Rock Island) and, after being evaluated there, was transferred to Iowa City via ambulance. Jennifer & Steve met him at the ER in Iowa City and he was there overnight.

10:00 am
Surgery has started and is going fine.

11:00 am:
Surgery is done, went as expected. The surgeon could see the excess fluid begin to drain as he was performing the procedure. Today is a day for resting and assessment; it will be difficult to tell if nausea and dizziness today is post-surgical or from the fluid on the brain, so we may not know much more until tomorrow.

2:00 pm:
Gretta has visited Conan: he says he has no dizziness or nausea. Complete 180 from past couple of days.
He was feeling so awful and it was VERY hard on those trying to care for him.

A Setback

Over the last 10 days, Conan has been experiencing some dizziness and it was getting steadily worse. On Wednesday he saw the neurologist in Iowa City and one of the tumors is pressing on a duct that allows cerebral spinal fluid to drain. (The result is hydrocephalus, and this causes pressure on the brain.)

On Monday afternoon he will have an EVT surgery. Essentially this makes a new place for that fluid to drain and it should ease the vertigo. He will be hospitalized for about 3 days post op.

I will post updates as I have them on Monday.

***Update: Surgery has been rescheduled to 8:00 am.