Tuesday, December 30, 2008

Christmastide 2

Cooper and Sherry have gone to KC for an appointment with the neurosurgeon tomorrow. He wants to check on the incison, remove the staples and I am sure check on Cooper's overall progress. I miss them.

I had dinner with Fr. Justin this evening, but I did not like coming home to an empty house.

I learned today on a forum I used to regularly visit of another 13 year old boy recently diagnosed with cancer. His name is Trace and has Ewing's Sarcoma. Please include him your prayers.

May the Creator of All Souls bless each of you tonight.

ron

Monday, December 29, 2008

Christmastide 1

Well it has been a busy few days. Friday evening the Scheuerman's came by and then late that evening Cooper's Aunt Glo and cousin Jenni arrived for a weekend visit.

Jenni brought like 3 suitcases of music (I am not exagerrating - she used to work for the Grammy Awards) on CD's for Cooper to look through and download songs to the computer and iPod.

They also brought kolaches and TEXAS BBQ ribs and brisket -YUM!

Saturday Cooper wanted to take them to El Vaquero - so we did that and Sherry got her birthday margarita! We then took them to see the lights in Carthage - Gloria thought them magnificent.

Sunday we went and had burgers for lunch, then the usual tour of the Falls (where we ran into some of the Freitas crew) and the Candy House, where Glo bought them out. They then left about 5 Sunday afternoon.

Today Cooper went to the orthodontist and had his braces removed. I am sure that feels good.
He goes back later today for his retainer.

He has been doing really well getting around and with his PT, still some weakness on the left side. He has been in very good spirits, but gets tired easily of course.

Hoping all in Joplin are enjoying the great weather.

Love to all,

rsc

Friday, December 26, 2008

Christmas Day

Cooper was up at 5 am to see what was under the tree. Then back to bed for a few hours.
Later in the day Cooper's Granny and Aunt Tammy came for dinner.
Then more naps and movies and TV. And video games. (it really is good therapy!)

All in all it was a quiet but blessed Christmas Day.

Remember - Christmas has just begun!

Love,
rsc

Wednesday, December 24, 2008

Holy Night

Sherry and Cooper kept their tradition this morning of having Christmas Eve breakfast with Janet and Jillian.

Later Cooper had PT and then some Christmas prep. Ron came home from work early and helped with the decorating. Cooper was tired and took a nap, while Sherry went and got some last minute shopping done.

Sherry and Cooper made cookies and we trimmed the tree.
Cooper hung the stockings and set up the creche.

We are now ready for Santa and are getting ready to watch It's A Wondeful Life.

And it is.

May God bless each of you this Holy Night.

Merry Christmas!

rsc

Tuesday, December 23, 2008

Strong Day

It was a busy day today.
Sherry took Cooper to the orthodontist, to see about having his braces removed. He was scheduled to get them off in about a month or so, but the doctors in KC asked if they could come off now in order to get better MRI images since the braces cause a void in the image.

He then had to go to the lab at Freeman to get blood drawn, so they could check his medicine levels.

When I asked how it went getting him in and out of the car with the walker going in the orthodontist and lab - Sherry told me he walked on his own without the walker!

They then went and got Do-Nuts at Dudes!

In the afternoon the Physical Therapist came and then quite a few visitors, by the time I got home he was pretty worn-out.

We had dinner and he rested a while and is now watching George Lopez and ready for 4th meal.

good night

ron

Monday, December 22, 2008

Ribbon Color

While still at the hospital, Cooper wondered what the ribbon color for brain tumors was. He wants to draw one on the grip tape of his skateboard.

So today I found out the ribbon color is gray. DUH - little gray cells!

So I made an image and added it to the blog header.

ron

Sunday, December 21, 2008

4th Sunday of Advent

Wow - this Advent has been really something , no?

Nothing new to report, Cooper had a few visitors today and is looking forward to more.

I will go back to work tomorrow.

Sherry will bear the burden of primary caregiver. (But as I told Cooper this evening, it is very much a privilege for us to take care of him. Even though now it is more care than a 13 year old young man wants.)

Sherry is such an awesome mom. I am so glad she works in a Pharmacy and can keep all the meds straight. It wouldn't be so bad if they didn't call one pill three different names!

Now to get ready for Christmas!

A Peaceful Night to All,

ron


p.s. Cooper doesn't care for grits, I do not know where I went wrong. Salt and Butter on mine!

Saturday, December 20, 2008

Saturday

Cooper slept a lot today. Real sleep - not hospital sleep.

I am sure it was nice not having beepers going off. Or being awakened to take a pill, be interrogated ( do you know where you are? do you know why you are here?), have vitals taken, and a bright light shined in your eyes.

After a slow start he has been getting around with the walker with some help. Some of his medicines haven't leveled off yet so that makes for some difficulty also. His appetite has been good and his spirits lifted after a couple of phone calls. (OK we did answer the phone a couple of times but he only took one call and he made one to his cousin Jenni)

now he is about ready to call it a night.


love to all

ron

Friday, December 19, 2008

Home

We arrived home safely about 8:30 this evening.

Please understand we will not be answering the phone nor allowing visitors for a few days.

However we soon expect to see many of you!

Still a long road ahead.


For all the love, prayers, support and generosity, thank you.

rsc

Southbound

Sometime today we'll be southbound to Joplin!

rsc

Friday Morning

Nothing new this morning.

Cooper has been really sleepy from the anti-seizure medicine. They took blood so they can check the medication levels and adjust the dose to what will work best for him.

Have a blessed day.

rsc

Thursday, December 18, 2008

A Better Day

After yesterday - today was good.

PT and OT went well.
He is getting around better - more, more under his own power. He still isn't 100% of course but continues to make progress.

They disconnected his IV so he doesn't have to drag a pole with him everywhere.

Santa came by today, not really a highlight for a 13 year -old - but we do have a picture with Santa!

He also seems to be getting some better rest.

I believe the thoughts and prayers are working.

Blessings to All,
rsc

p.s I forgot to mention that Sherry called the school today so Ms. Woods put Cooper on the intercom so he could say hi to the whole school. I am sure that was good medicine for everyone.

GOOD Morning

It's a new day.

Last night he rested well until the nurse woke him up to take some nasty tasting chewable tablets to make sur ehe did not have another seizure. They did that three times.

This morning he ate TWO BK Croissants! And has been in much better spirits it seems - a bit more talkative.

He says he is looking forward to Physical Therapy today and hopes to play the Wii.

We hope to be back home this weekend. Cooper is doing his part and we hope the weather will coperate.

Love,
rsc

Wednesday, December 17, 2008

Late Night Thought

You know the Verizon cell phone commercials? The ones where people go anywhere and there is this huge group of people - the support network?

That's how I feel.

Here we are so many miles from home, in this surreal tragic situation and yet We KNOW there is this huge, HUGE network of support people. It is overwhelming.

Words cannot express the gratitude we feel knowing how loved Cooper is.

Thank You,

ron

Pathology Reports and Treatment Plan

The Oncologists gave us the news today, Cooper's tumor is anaplastic ependymoma.
This is a cancerous tumor that is rather rare.

Treatment plan includes chemotherapy, which may shrink the tumor. After the cycle of chemotherapy, it is possible another surgery will be considered to remove more of the tumor. The more that can be surgically removed the better. Radiation treatments will then follow to work at killing any remaining cells.

Tonight about 6:30 he had a small seizure. They say this is not uncommon after surgery such as this. They did go ahead and do a CT scan and the oncologist said he could not see anything different than the last CT scan done 12/13. Radiologists and neurosurgeons will review it tomorrow.

He is back in his room and thhough he does not remember what happened , he seems cognitively as he was before the seizure.

Not such a good day.

Please keep the prayers coming.

Love to all,
rsc

Work Out Day

Cooper had a good night - getting up only once in the night and sleeping in till 7:30.

He had been asking for Burger King for breakfast and today he got it. He ate almost all of a sausage egg and cheese croissant and three cinna-minis.

After breakfast he got out the hospital gown and into a t-shirt.

Then the occupational therapist came in and Cooper banished his parents form the room! :^)

Right after the OT the girls from PT came and whisked him off to the exercise room. Again he was glad to be rid of mom and dad.

Sometime during this the McKeuoghs came by and dropped off some goodies. Of course that was the only time Sherry or I have not been here. I tried calling and hopefully we will catch up with them before they leave.

Its a slush day in KC

Later
rsc

Tuesday, December 16, 2008

Another day done

Dear blog,

Here's what happened today.

Cooper took three hikes down the hall along with mom and dad for support.
He still has weakness on his left side, but is working to get the strength and coordination.

He ate pizza for lunch and grilled cheese for dinner.

Nothing new from the doctors today.

Have a peaceful night.

Love,
rsc

Another Snow Day

Wow it is really coming down here in KC. We hear it is a snow day in Joplin. Another school day not missed!

You can find out about the weather on the weather channel or weather.com, but this the only place to find out about Cooper!

He had a pretty good night, periods of sleep interrupted by taking meds and having vital signs checked.

PT came in this morning and he did great job walking down the hall with a bit of help. He asked later if he could take another walk today. Yes - PT wants him to take two more walks today.

After PT he sat up in the chair for a while and had some bacon for breakfast.

His respiratory therapy is going well, too - on some breaths he can get the plunger all the way up to the target.

Hoping you have another safe snow day.

rsc

Monday, December 15, 2008

Midnight

Sherry left about 8:30 to go to Ronald McDonald House (RMH) to get a shower and some sleep.
Cooper got his medicine, got comfortable in bed, said good night and went to sleep. 20 minutes later they came - woke him up to take vitals. #$%^&

He did get back to sleep - until 10:30 when they came to give more meds.

Then his back was hurting and he couldn't get comfortable. But after much manuvering and getting an egg crate pad for the bed - he got situated. They did think to take his vitals at that time.

Now it is just about Midnight, the pain med has kicked in and looks like he is asleep. Hopefully he will get a few hours good rest.

ron

Busy Day

It has been a busy day. The surgery and oncology teams came by. The lab tech came and took blood. The Occupational therapist and Physical therapists came by and got him moving. The repiratory therapist came. And he got a shower.

Through it all he has really done well and all are happy with the progress.

I think the boy is worn out and hopefully will sleep well tonight.

We have yet to get the final pathology report, so don't know more than a little that the oncologist told us. Maybe tomorrow we will get the results.

Written down it doesn't look like much - but it was a busy, busy day.

Good night,
rsc

Snow Day

Well things continue to progress. Cooper has been able to get up out of bed to go to the bathroom - inspite of being on some really heavy duty pain med that keeps him rather out of it.

They plan to adjust that some to get him more awake today.

Still no word on the pathology report -hopefully this afternoon.

Enjoy the icy day - be careful if you venture out.

Love,
rsc

Sunday, December 14, 2008

A Good Evening

The new pain med and pump set up seems to be working well. That's it for the medical update.

He has been awake for a couple of hours, eaten a little bit, and has watched TV - we are waiting now for George Lopez Show, Cooper's favorite. But I think he is not going to be able to stay awake.

It got cold here today, right now about 13 -brrrrrrrrrrrr

And it is snowing ****** (but no white out, Jay.)

a peaceful good night to all,

rsc

Room with a view

OK not really but more of a view than the PICU room's view of another building and roof top.

Yes Cooper is now out of ICU and on the Oncology floor - in a "regular " room.

They have put him on another type of pain med and it is in a pump so that he can press a button when the pain starts again and get quicker relief. Yes the machine is programmed so he can't "overmedicate" himself.

He seems to be resting better than he has since the surgery. And that is good - he needs to rest now before the next challenge.

What that challenge is, we won't know until the pathology reports on the tumor come back and we find out what the treatment will be. Hopefully we won't have to wait longer than tomorow, Monday.

That's it till later - Now go hug your kids.

Love,
rsc

Gaudy Sunday

Cooper had a good night.

He still has pain and they are still trying to get the meds adjusted. He has slow respiration and some apnea when sleeping after the pain meds. So they are looking to switch to an oral pain med instead of through the IV. I do not know what the meds are.

He has been sititng up and drinking juice. His head is starting to itch where one of the incisions is. His neuroligical tests (eye dilation, eye movement, muscle control) are good.

He also was saying he rememebers going for the cat scan yesterday and that he had to have two operations. He also wanted to know if he could take a shower.

Good signs of a progressive recovery.

**********************************************************************************
This third Sunday of Advent is often called Rose Sunday; today we light the rose colored candle on the Advent wreath, reminding us that there is joy during our long wait in the darkness.

You may know that another of the names for this rose Sunday is gaudete Sunday. The Latin word gaudete is our word gaudy. No matter what the world seems to offer this day, in our lives, in our world, in the midst of winter, God offers us today a Gaudy Sunday.

Wear something bright colored today, rejoice and be glad.

Blessings to All,

rsc

Saturday, December 13, 2008

Saturday Night

Cooper is doing well. As posted earlier, today they pulled the breathing tube , the shunt drain, and some of the lines in his arms out. He has been awake and talking but still in some pain.

They are working to adjust the pain meds, so he gets more constant relief, rather than the up and down cycle of pain-relief-pain. And too so he might not be so groggy.

Today has been good. We hope and pray tomorrow is better.

Again we appreciate all the love, prayers and generosity of everyone. Thank you too for the comments on this blog. Though we do not respond to them, each one really means a lot.

May the God of All bless each of you.

good night,

rsc

Progress

Cooper is now off the breathing tube and is able to talk.
Looks a lot better, more like our Coop without all that stuff in his face.

Said he is thirsty but it will be a while before he can have anything. His voice sounds good though for having had a tube stuck down his throat the last day and a half.

Vitals signs all good. Great progress!

Maybe will get out of ICU tomorrow? We haven't been told that but are hopeful.

Hope all are having a good Saturday in this Advent Season preparing for the HoliDay - it is what Cooper would rather be doing!

rsc

Slow Day

Saturday update:
another ct scan this am
vitals are good
shunt removed
trying to wean of incubation tube

take care,
rsc

Friday, December 12, 2008

no news

Dr. is in OR - Don't think we'll see him tonight.

Nothing new

good night,

CSR

MRI

Cooper is back in ICU . They were able to get the MRI done this afternoon. YEA!

Now waiting on Dr. again to tell us what it showed and what's next.

Please keep the prayers coming - still a long way to go.

peace to all,
CSR

Surgery #2 Update 2

1:00

Surgery was completed about aout 12:30

They will send him back to ICU and will do another MRI to check things out as soon as they can - unfortunately that may not be until Monday.

Anyay he is out of the second surgery and doing well for what he has been through.

Will post something this evening.

RSC

(ron, sherry cooper) :^)

Surgery #2 Update

10:45

OR just called. The doctor was able to install a shunt to drain off the excess fluid. Dr. then found a blood clot and removed that. Finally he was then able to remove more of the tumor. So a shiny lining in this morning's cloud.

That is all the nurse said - will post after surgerys is complete and we talk to Dr.

Thank you ALL for the prayer power.

Sherry sends extra special hugs and love to St.Peter's school kids. You guys rock!

Set Back

Cooper had restless night and his blood pressure was too high. At 6 this morning they did a Cat Scan and found bleeding at the tumor site. They tried to control it with additonal medicine but that did not work.

They have now taken Cooper back into the Operating Room to go back in to stop the bleeding and possibly put in a shunt to drain off the fluid.

We are back in th OR waiting room.

Will let you know as we know.

Pray ... Pray Hard!

Ron & Sherry

Thursday, December 11, 2008

ICU

Cooper has been moved to ICU and is doing well. We have gotten him to talk and he has asked for antoher pillow, given the thumbs up and is resting.

That is all for tonight.

Thanks again to all for your thoughts, prayers and generosity.

good night!

Post Op

Cooper is out of surgery and is doing fine.

That part went well. They still do not know what type or anything else about the tumor. It will be at LEAST Monday before we know more.

SO we have gotten throught the surgery OK and now we wait.

Will post more as we learn more.

Love
Cooper , Sherry & Ron

Cooper Surgery 3

2:30

about another 30-45 minutes they say
he is doing fine and will be in ICU this evening after the recovery room

Cooper's Surgery 2

Update 1:20

OR just called - everything still going well and he is very stable. Still another hour or so to go.

ron

Cooper's Surgery 1

Cooper was taken back for surgery this morning. After prep and all it was was an hour before the surgery started. It has been an hour or so and they just called to say he is doing fine and the doctor is working a way.

We want to thank EVERYONE for all the support, prayers, gifts and love. We want to thank you all personally and hopefully we will be able to - right now it is all a bit overwhelming. Just know that we are in awe of the temendous outpouring of kindness and love you all have shown our family during this time.

Love,

Cooper, Sherry and Ron