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.

Kicks for Conan

There will be a Quad-Cities alumni soccer tournament on Dec. 27-28 to benefit Rock Island girls' soccer coach Conan Dalton, who is battling a recurrence of brain cancer. All proceeds from "Kicks for Conan" will be donated to his family to offset his medical bills.

The event will have a 30-and-over and 30-and-under bracket of alumni teams. There also are sponsorship opportunities for those who want to help.

Dalton was diagnosed with brain cancer in 2008. During his fight, he has encountered two operations. A recent surveillance visit with his oncologist revealed three lesions on his brain, resulting in chemotherapy sessions in Iowa City.

For more information, contact Amy Kent at 309-236-2544 or ankent39@gmail.com.

(From: http://www.qconline.com/sports/high_school_sports/kicks-for-conan-to-benefit-rocky-girls-soccer-coach/article_a9b457d9-7af5-5030-9d99-31eebb7b1f2d.html)

(Correction from Amy: The paper today stated that this event was set to be at the end of October. That date is wrong. The correct date is at the end of December. December 27th and December 28!)

More info . . .

After additional discussions with the doc, Gretta gave me more info.

They didn't start the temodar right away because they wanted to make sure it wouldn't disqualify him for a potential study. It doesn't, so that will start this week and continue for 8 weeks. At that point they will scan again.

Meanwhile, they are still in discussions with other med centers to see what new treatments are emerging for recurrent brain tumors.

Not Good News Monday

Review of the latest MRI revealed that this chemo wasn't working. The tumors were not smaller.

Big hit, but the doctor also said this is not the end. UIHC staff called around for second opinions and has made some suggestions.

Also, these tumors are still small and were found because docs were looking with quarterly MRIs.

Conan is restarting temodar, the chemo he had in 2008 & 2011.

Conan and Gretta are still sorting through the news and looking at options. Continue offering your support as best you can.

Here we go Again

Unfortunately, a scan last week revealed new tumors. They are small -- in fact the two docs talked for awhile to decide if it was 2 or 3 hot spots. The surgeon also reviewed the scans and agreed that chemo should take care of these new trouble spots.

The plan is to run an infusion of irinotecan for chemo, which is new for Conan, and also treat with avastin, which he got in 2011. Next week he'll get the first dose and we'll take it from there. 

We have known all along that the likelihood of recurrence is high, so the scans have continued about every three months. Because of that, these new growths were caught early and will be treated quickly and effectively.  

Happy Birthday Conan!

I am more than a few days late on the HB, but that's because I struggled to find the words for what I wanted to say.

Conan celebrated his 40th birthday earlier this month.  One of the American Cancer Society's slogans in recent years has been about creating a world with more birthdays.  

Here is one more birthday.  It has been close to six years since Conan's initial surgery.  His chemotherapy pill was first approved about 15 years ago.  My father-in-law's brain tumor was discovered before temodar was available.  The best the doctors had in treatments at the time didn't work and he died less than 6 months after his diagnosis.

Because of the hard work of many scientists and doctors, as well as cancer patients willing to take a chance, and people willing to donate money to promote research Conan is with us today. Lately I have been thinking about the perseverance it takes for there to be people, medicines, and machines to treat them. All the doctors, nurses and technicians that he has seen in the last six years all had to spend time, money and great effort to get to a place where they can help others.  Donors have sent millions of dollars so UIHC can build a place to administer treatments and look for new and better treatments. Researchers have spent decades developing safer ways to deliver radiation to tumors and look for new medicines that will be more effective.

So take a moment to be thankful for the birthdays around you. Take moment to mourn the ones that didn't happen. Take time to thank someone you know has helped you or someone else. And take more time to help someone - be it in time, money, or effort - you never know how much you can do until you try.