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.

On the way home!

Gretta worked a full day today and was swinging by the hospital to pick up Conan when I talked to her earlier.

He is having a little trouble walking, so the physical therapist that put him through his paces suggested using a cane for a few days.  Gretta thinks he may still be getting more meds than he needs, but they have a regular checkup at UIHC on Tuesday, so they will bring all the notes and test from Rock Island with them.

I am repeating myself, but things looked so bleak on Tuesday, so for a person's brain to be so attacked and then recover is amazing.

Feeling Good!

Conan says he feels as good as any other day.

He's a little loopy as they test medication doses and effectiveness, and he will be in the hospital while they decide on the right mix, but for the most part he is back to his old self.

He remembers very little of what happened Tuesday, but we are assuming that because of the trauma his brain has already sustained through 2 surgeries and his 2008 radiation, the fever triggered a seizure.

I didn't expect an outcome this good when mom told me they had called an ambulance to take him to the hospital  -- thank you all for your prayers and messages of hope and encouragement! 

Awake & Eating

I still have a lot of questions, but it looks like Conan's condition is improving. It appears he was having some seizures on both sides of his brain, perhaps initiated by the fever. He will begin taking some extended release seizure medication and hopefully his condition will stabilize.

I'm not sure how long he will remain hospitalized, but they are moving him out of ICU and into a room.

Still No Answers

MRI was done around 4 this afternoon, but it didn't shed any new light on the situation.

Good news is temperature seems to be under control.  (Looks like I forgot to mention that earlier, but he was running a fever of around 102 and it wasn't responding to attempts to reduce it.)

Need Prayer

Tuesday morning, Conan wasn't feeling great, but it didn't seem to be a big deal.  Gretta took Henry to my parents house and she went to work.  She asked them to check on Conan later in the day.

When they called and he didn't answer, they grew concerned and they went to the house.  He was conscious, but not making sense when my parents and his Mom arrived.  (We think he realized something was wrong and he called his Mom.)

He was admitted to the hospital and had a CT scan and a spinal tap last night.  There was no sign of stroke, tumor regrowth or infection with those tests.

He is still mostly unresponsive, but he has spoken some.  He was moving his arm and trying to sit up some this morning.  They wanted to do an MRI, but decided he was moving too much for that and they didn't want to sedate him.