COMFORT QUILT UPDATE!! Here's a hint.

Radiation Waiting Lounge

This picture was taken day our beautiful baby daughter was born.    7-8-10


My husband started to naturally gray this year.  He still looks so young, so healthy.  


How were we to know that a tumor, bigger than a grapefruit, was waiting to make its appearance so soon after this beautiful day..


His facial hair is now fully gray thanks to the chemo drugs he was taking.    


A new drug will be started next week - the prior drug failed us miserably.  Hopefully there will be less pain this time.


Radiation in my husband's case is used for pain control.  PAIN CONTROL - REALLY???  He is given radiation in a room with a door that is 6 inches thick.  He is alone on a hard board, while the technicians stay OUTSIDE of the room for their safety.


How did we get here?  


My beautiful daughter Adelaide recently saw a picture of her daddy from last year......

"I knew it was to good to be true."  Our big girl struggled to say.  

"What do you mean."  I ask.

"Our life, it was just so....so perfect.  And, now........it's just not."   She answered.

Now I wait, in the lounge.  A lounge?  Really.  Where the heck is my cocktail, if this is a "lounge"? 


Other families are here.  Are they feeling the same pain - sadness -despair?  Are they telling their children to be "grateful" for today because they just don't know what's going to happen. 


I am thankful for today.  Because today I get to hold my husband's hand.   

in·cur·a·ble/inˈkyo͞orəbəl/

Adjective:	(of a sick person or a disease) Not able to be cured.
Noun:	A person who cannot be cured.

We'll just see about that...

WON'T WE

All the Comfort Quilt Info in a Nutshell

Brave, smart, and beautiful inside and out.

Adelaide talks about what is most important in life.

Daddy and His Baby Girl

A letter from Adelaide

I found out my dad has kidney cancer in February. Only 100 people get his kind of cancer every year. I told him that makes him special. Mom told me people who have dad’s cancer die. She said if he just had the vanilla ice-cream part of cancer it wouldn’t be bad but he also has chocolate sauce on it which is really bad. There is no medicine that makes it go away. The medicine he takes makes him really sick. I thought medicine makes people feel better. The doctors don’t know when he’s going to die and I don’t either. My mom and my dad cry sometimes. I cry a lot.

I see a counselor, Robin, who helps me talk about dad and other stuff. We came up with an idea to make dad a quilt that would help him not be so cold. We thought we would ask all of dads friends and family to write or draw on a piece of fabric to make the quilt. Then I thought we could ask people he doesn’t know in real life, but people who are important to him, like you. I want dad to know everyone, everywhere loves him and is hoping he will be o.k. It’s good to feel like I can do something to help out because so many times I’m not sure what I can do to fix dad’s cancer. He doesn’t know a thing about it, so I’m really excited!

If you know someone famous and would like a piece of fabric for them to sign, email my mom at alyceiscurious@gmail.com.

Thank you,
Adelaide

Comfort Quilt Commercial

Comfort Quilt Commercial

If you can imagine - a stranger made this commercial for us.  Click on the link above.  It is absolutely worth the watch.

LINK IS NO LONGER AVAILABLE BUT IT WAS AMAZING!!!

What a beautiful world this really is.

Adelaide's Comfort Quilt Project

Daddy's Girl

When 9 year old Adelaide discovered that her 47 year old Father was dying from a rare form of kidney cancer, she wanted to something to help him.  In therapy, she came up with the idea to make a comfort quilt that would help to keep him warm.  And to personalize it, she decided to send squares of the quilt to family and friends so they could sign it.

Then Adelaide decided that if she could get celebrities to sign it, her Father would realize how important he is in the world.  Through her Mom’s posts on Facebook and Youtube, and the kindness of people they didn’t even know, she has already gotten autographs back from the entire Chicago Bears team, Stiller and Meara, Charlie Sheen, former Bulls GM Jerry Krause and Space Shuttle Astronaut Greg Chamitoff.

The quilt is a surprise for her Father’s birthday in January.  If you know of a celebrity who would be willing to sign it, Adelaide’s Mom will send you a square of the quilt, a pen, a letter from Adelaide, and a self addressed stamped envelope.

What some may consider a small gesture will help this 9 year old and her entire family cope in what is clearly the most challenging time of their lives.

Please click on the links below.  

Adelaide in Her Own Words

Adelaide's Mother Alyce Describes Comfort Quilt Project

A message from Adelaide and her Mom

A Blog Written about the Comfort Quilt (Didn't Even Know Him)

Author SirBacon123.blogs 

The Fabric Of Our Life

The internet is an amazing place.

With a few clicks, you can see anything.

And I mean ANYTHING!

A few months ago, at 4:03pm, a friend sent me this amazing picture.

In case you can’t tell, these are 1300 boxing speed bags.

Shaped into the face of the great Muhammed Ali.

As soon as I got it, I forwarded it to another friend.

Who is a friend of Laila Ali.

Muhammed’s daughter.

(That’s the closest I get to greatness.)

99 minutes later, I got this reply:

That's pretty cool!

Sent from my iPhone

The reply was from Laila.

How cool is that.

I know somebody.

Who knows somebody.

Who knows Muhammed Ali.

Take that Kevin Bacon.

I’m sure that happens all the time.

But not to me.

My email inbox is loaded with all sorts of stuff.

Everything from enhancement opportunities. 

To more jokes than a night at the Comedy Store.

Most emails grab my attention for at least a second.

Sometimes two.

But I got an email a few days ago that I can’t get out of my mind.

It came from a close friend of mine.

Whose wife is a close friend of Alyce.

Not Muhammed Ali.

Just Alyce.

But Alyce is pretty great in her own way.

About nine months ago her husband was diagnosed with a rare form of kidney cancer.

Incurable kidney cancer.

According to Alyce, 100 people get this type of cancer every year.

That’s it.

And unfortunately her 47-year old husband is one of them.

“Needless to say, this is a sad sad house,” Alyce said.

And when you are the mother of nine-year-old twins.

And a 15-month-old baby.

...

...I don’t have the words to describe.

And I’m allegedly a writer.

When facing adversity -- in this case, the worst type.

Everyone copes their own way.

That is a personal choice.

But for Alyce, her choice was to go viral.

And for the last six months, she’s been posting her life on youtube.

For all to see.

Good.  Bad.  Sad.  Funny.  Sad.  Heartbreaking.

It’s all there.

Now I must warn you.

These videos have absolutely no production quality.

None.

Just a woman.

An unbelievably brave woman.

Sitting in front of a camera.

Many nights in a dark room.

Spilling the dark details.

Of her life.

No sugar coating.

No “everything is going to be fine.”

Alyce knows what is happening.

And she’s not afraid to show it.

If you make it through six seconds without a kleenex.

You are better than me.

Actually, you are less human than me.

Not every one of her videos is intended to be tearjerking.

But when you consider the reality, it’s impossible to hold in your emotions.

Alyce has been posting these blogs, all while taking care of a sick husband and three young kids.

And this is one open book.

Recently she admitted that her son has chosen to think his dad will be ok.

While his twin sister has had other thoughts.

“She wants to know when her dad is going to die.”

“She’s a planner,” Alyce said.

Both of the kids have been in therapy since finding out the terrible news in February.

And during one of those therapy sessions, the counselor recommended a project.

A project for the kids.

A project that could (hopefully) keep their mind on something other than what anyone’s mind would be on.

That project is making a quilt.

A quilt that family and friends could sign.

So when dad is cold, “he could wrap himself with everybody he loves.”

The goal is to deliver this quilt in January.

For his 48th birthday.

“The outpouring of love that is happening is incredible,” Alyce said.

So incredible, it got her daughter thinking.

She wondered if any famous people would sign this quilt.

In a nine-year-old’s mind, if a famous person would sign for her dad, that would show that people really do care.

So Alyce posted another video blog.

As she does every few days.

“I am so excited today.”

That’s how it started.

Then for the next eight minutes.

And 33 seconds.

She tells us about this idea.

This goal.

Of getting a celebrity to sign this quilt.

Any celebrity.

She mentioned some of her husband’s favorites.

Like “anybody from the movie Platoon.”

Or Kiefer Sutherland.

Or Shania Twain.

Or Toby Keith.

But deep down it was clearly less about the celebrity.

And more about her kids.

“I haven’t seen this kind of light from my daughter for a long time.”

About 30 minutes ago I got a link to Alyce’s latest video.

A video that shows Alyce with a giant smile.

At times.

Clearly overwhelmed.

Overwhelmed that Charlie Sheen is going to sign.

And that “all of the Chicago Bears” have signed.

Overwhelmed that people really do care.

Most important, she told us that her kids "feel empowered by what is going on.”

News that would make anybody smile.

But unfortunately that was not the only news that Alyce had to report.

Sunday she rushed her husband back to the hospital.

He was in more pain than she had ever seen him in.

“The cancer has spread.  And it hurts.”

The cancer is physically hurting him.

She then reminded us of the plans to give the quilt to her husband in January.

For his birthday.

Then she paused.

“But I don’t know.  I don’t know how much time.”

If you want to learn more about Alyce and her family, please visit: 

http://www.youtube.com/alyceiscurious

alyceiscurious@gmail.com

Fast Foward

It's been 8 months since I last blogged (in written form).  I took blogging to video.  More comfortable talkin' than writin'.

What I thought was a surgery to beat cancer wasn't.

What I thought was a temporary blip on our family screen turned out to be a tsunami of what's next.

My husband's cancer spread.  Spread again.  And here we are.  I hate the phrase "fight of your life".  Cause really...is a watergun a match for a forest fire?

Watching my husband's physical appearance change has been strange.  We all change throughout time.   This wasn't a time thing - this happened overnight.   Similar to how my wrinkles are erased by the magic of Botox.  His youthful appearance has been erased by the ravaging of cancer.

My kids are suffering.  Not in silence.  We have always been a family who shares "feelings".  Good training for the future as it turns out.  So much pain and sadness coming from their tiny hearts.   I comfort them as best I can.  I am hoping it's good enough.

Surgery is over

The doctor just came out to tell me that surgery was successful. They removed the kidney and the giant fucking tumor that just about ruined our lives. The doc said the puss in the tumor likely caused the spike in his white cell blood count. The tumor and some lymph nodes are being sent to pathology. BUT the doc said that he will most likely need NO ADDITIONAL therapies. Hear that cancer? We got you in one big bundle of shit. Threw you in the trash to never be seen again.

You did not take my husband. You did not leave my three beautiful children fatherless. You have been beaten.

I now sit in the visitors lounge waiting for my husband to be released to a room. He is recovering now. Not aware that he will be able to see our little baby graduate college and further. Witness our son become even more than we can imagine he will be. Watch our oldest beautiful daughter blossom into a wonderful woman whose future is a vast as the eye can see.

I sit here feeling overwhelmed with gratitude. My husband will be by my side to witness all that life will hand us. What I know is that together we can handle it.

Things are happening too quickly...

In am not going to recap the events of yesterday. Or, an hour ago for that matter. it takes all of my strength to remember to brush my teeth.

Both the bone scan and the MRI show the cancer has not spread to other organs or his bones.

We met with the doctor who is performing the surgery. Invoke this morning at 3:45 quickly dressed, woke our beautiful sleeping baby so I can breastfeed. Got into my car to find a dead battery. Oh my,what a shock.

Fast forward......

They just took my husband, father of our children to surgery. As a non practicing Jew I'm not sure what I'm supposed to say. But what I want to say is p, "Please God, watch over my husband. Help him get through this surgery with no pain. Let him wake to a feeling of peace that this road we are currently traveling on isn a short detour and we will be back on the road of health and happiness quickly.

The waiting begins...

What next...

The diagnosis is kidney cancer? I was told by the doctor in charge of his blood. I fell to my knees, then fell tonthe floor in a ball. I begged the talking. Telling her I CAN'T HEAR YOU. YOU ARE NOT MAKING ANY SEMSE TO ME!! Kidney cancer. What the fuck is kidney cancer? And why the fuck does my husband have it? Don't the powers at be realize we have a new baby and two other children that need their father? Doesn't anybody care about them?

At that very moment my dear husband walked in from a test he was taking. I quickly gained my composure...

Hospitals suck!

I left my husband last night to go home and rest. Thought he would as well. I got a call at 7:30 informing me that he had not yet been brought dinner. I ordered it be brought at 6:30. While we were on the phone a nurse knocks..."I found your dinner sittin out here by your door.". The ticket reads...made at 5:45pm. Deliver at 6:30pm. But don't give it to the really sick guy until it's cold at 7:30.

It's not enough to be sick?????

This morning. I wake up at 2:30. Well, I'm woken up at 2:30 by our delicious baby. I sit in the dark given our baby food that I can provide. Wondering to myself if her daddy will see her go to preschool. I am wishing I had more faith because I wanted to pray I just didn't know how to.

Baby falls to sleep I go back to bed. An hour later my older girl comes in saying she had a nightmare. I felonies to climb in and lay with me. I stroke her hair thankful she is not aware of the real life nightmare I feel is impending.

Up for good at 5:30 and start getting ready to go to the hospital. Give my mother and inlays instructions on what to do today. (in failed to mention that at a moments notice my mother flew in from FL. (I could not get through this, whatever this is without her.). My in-laws also arrived yesterday. Takes three grandparents to do my job. I must be pretty important.

Stop at Starbucks get a hot and cold drink. Stop at Walgreens get my husband a very specific type of cough drop. As well as Milanos, Oreos, gum, magazines. Oh, and a giant bear holding a heart that says I LOVE YOU. Half price on the bear as it's after Valentines Day, and clearly people only love others half as much after that.

THE WORST HAS HAPPENED

KIDNEY CANCER!!!!

At the hospital for the first time.

...not feeling like doing a recap. So let's go forward. The general practitioner has no idea what's going on with my husband. My very frightened husband. We, the doctor and I, decided the best place for him is in the hospital. When you're an outpatient you get the privlidge of convincing the insurance company to allow you run tests that just might save the father of your children. When you're in hospital they gotta do it!

We entered through the ER. I actually said we are "checking in" as if we were in Vegas or some other fun vacation spot. But then we met with the triage nurse. Pretty blonde woman who as the questions were asked an answered presented a more and more perplexed look on her face.

Done with that battery of questions and into the emergency room area. Ohbyeah, one question was interesting...What religion are you? Is that a last rights question eected to bring comfort?

It's very slow here. It seems like we're the only emergency and we walked in here.

Chest x-ray done. CT scan done. Blood drawn. He has a slight fever. Seems to be resting comfortably.

He has take a very brave position. Whatever it is I will get medicine and that'll be that. He is much more brave than I am.

The First Day of The Rest of My Life

The new normal.  My husband has been sick since November.  Well, not really since November, but mostly.  Had a really bad cough and went to the doctor - got the typical antibiotic and was "cured."

Then came gum surgery in December.  Complain, complain, ow, ow.  The usual man stuff.   Cough essentially gone.

Fast forward.  A little, not a lot to January.  Cough is back.  Back with a vengeance.  Fast forward again.  Add to the cough.  Vomitting while coughing.  I hate when I vomit and I hate it more watching someone else vomit.  Add diarrhea.  Ow, my stomach is bothering me.  Add some my balls hurt.  Do you think it's from shoveling?  Then throw in a little my back hurts, should I take something....

...and walah we are back at the doctor.

Hey doc, think I should have a blood-test?  I guess, if you want one, they answered.  Blood drawn - then results came back.

Here's some penecillen we'll retest your blood in a few days.  Why, who knows?  Fast forward just a smidge to yesterday.  Blood drawn.  Wait til tomorrow for your results.

We're at today.  Like today today.  The results are back and your white cell blood count is higher today than it was.  You need to get a CT scan on your chest and abdomen.  What are you checking for?  Well, there's an infection of some sort so we need to find out what it is.  O.K. my husband told the doctor.  Text me with this info, then left his office taking a half a day.

Just gotten to my weekly appointment with my therapist (as if where you are doesn't matter) when my husband called.  "Did you get my text?" he wanted to know.  I hadn't just yet.

Skipping ahead....I am on hold waiting for the results of the ultrasound.  The ultrasound I haven't mentioned yet, but if it's still relevant after I hang up I'll discuss it.  My heart is pounding, and I feel like I can't breath.

My husband is downstairs with our three children.  They are so innocent.  They aren't aware that our lives might be in a spiral as we speak.  Or should I say, as I type.   My song is singing to our youngest daughter.  My oldest daughter just came to me and kissed me for no reason.  If it were any other day, at any other time I would feel so lucky.

.....still on hold.

My first Blog

My first blog consisted of the following:

Trying to find the perfect fonts, background, colors, etc.  I wanted it to start with a cathartic exercise - but it wasn't quite that romantic.