Proud of my wife Julie who shaved her head

[Nick RaCha]

As many of you know. My wife's cousin's daughter Mira (4 years old) is is fighting cancer

 

Mira is a child with incredible spirit and personality. Mira loves

many things- her big brother (Jackson), her grandparents (many of

them!), uncles and aunts, playing outside, and creating art. Mira is a

fighter. Through all of her treatments, those around her could see

that any set backs were only going to be temporary. Mira has

endured several surgeries, 6 rounds of high dose chemotherapy, 33

days of radiation to her brain and spine, as well as an experimental

treatment at Sloan-Kettering. Mira had many complications from

her cancer, but was making great progress in her recovery, when

she was diagnosed with recurrent ependymoma in January 2008,

two years after her initial diagnosis. She had surgery to remove

that tumor and will enter into further treatment soon.

 

My wife Julie decided, through the St Baldricks organization has raised over $800

for cancer research. I'm proud of her and i'm posting this as a Kudos.

 

Pictures of julie

click on the link "Particpant Information" for update pictures

 

 

Here is a poem that Julie wrote

 

Ode to Saint Baldrick’s Day

In Honor of Mira Brouwer

My cousin’s 4 year old daughter- diagnosed with brain and spinal cancer Jan 2006

By Julie Paulus

 

There we went as we were,

Just floating through life.

There we went as we were,

And then like a knife,

 

IT slashed through our world.

Turning life upside down.

IT rattled our doors.

IT kicked us around.

 

The IT was cancer,

we’ve now come to know.

The IT was cancer,

Never friend – ever foe.

 

It comes to the rich.

It comes to the poor.

It could come after YOU.

It could come after YOURS.

 

Now it’s one thing if it happens to he or to she.

It’s one thing if it happens to you or to me.

But when it comes to our children,

That’s something else to consider.

When it comes to our children

That’s something else

Altogether.

 

Children should be happy, light-hearted and free,

Allowed to be healthy and simply LET BE!

 

But that’s not how it happens,

Cancer disregards age.

 

So what do we do with our anguish and rage?

 

WE CUT OFF OUR HAIR!

And hope for donations

WE CUT OFF OUR HAIR

Shouting this proclamation –

 

NOW LISTEN HERE cancer!

LISTEN UP!

LISTEN CLOSE!

 

We’ll raise lots of money.

We’ll find out how you tick.

We’ll take you to school.

We’ll make YOU get SICK!

 

We won't let you take precious children away…

You won’t steal one half-hour of one childhood day!

 

There now you have it,

This kick-cancer’s-butt-rhyme,

Do something with it.

Now is the time.

Make a donation,

Or cut off your hair.

Do what you can.

To show that you care.

 

 

I will be getting my hair cut off on March 13th to raise funds for childhood cancer research – I’ve set a goal of raising $500 – not sure if we’ll make it with just a few weeks time – we’ll see. If you can help with a donation just:

Click this link http://www.stbaldricks.org/participants/sh...tKey=2008|28745

- Choose ‘donate online’ and use a credit or debit card or you can download a donation form and send a check to St. Baldrick’s directly or;

- You can mail me a check (5 White Oak Bend Rochester, NY 14624) made out to ‘St. Baldrick’s Foundation’ and I will complete a donation form for you and mail it in or

- Donate by phone 888-899-BALD

 

All donations are 100% tax deductible!

 

Please send this along to anyone else you know who would want to help.

 

THANK YOU! THANK YOU! THANK YOU!

Julie Paulus

 

To learn more about St. Baldrick’s: www.stbaldricks.org

 

 

 

Maybe I'll do this next year

 

Nick in RaChaCha

[ajflutie]

I too am glad your wife shaved her head, and wish we all would. My prayers and thoughts go out to you and your family, and I know that Mira will fight the fight. From personal experience, I know that cancer kids are amazing individuals.

 

Some months ago I posted a couple places on here about my son AJ, and his battle with cancer. I got some great responses from you guys, and a variety of thoughtful cards, shirts etc. Thanks to you all.

 

Well unfortunately, AJ left us on Jan 5, 2008. AJ was a normal, strong, healthy 14 year old getting ready to move to back to North Carolina and start high school. He was anxious about it, leaving his buddies, worried that North Carolina football programs would not rank as high as Texas football programs. He started getting sick just before our house hunting trip up there, and when we got back, on Fathers Day 2007, he was admitted to TX Childrens Hospital.

 

AJ truly was a remarkable young man. He was born during a blizzard in March 1993, and to this day I remember him not crying and breathing right after being born, and the doctor and nurses rushing around in the delivery room. But after he took that first breath, boy did he breath deep the rest of his life. He lived life. He was always smiling. He loved people, music, playing the guitar, animals, movies, good books. He thought. He had fun, he made people laugh, he did the right things, competed, and was simply just a joy to be around. He was the love of our lifes. To unabashedly steal from his sister Katelyn, AJ, you would say something to make me laugh or cry or think and I would just stare at you thinking how did you even think of that?†To keep stealing his best buddy Pablo said, AJs character was like the sun: brilliant, golden, and able to light up the whole world. Jimmy V would be proud of the way AJ lived.

 

Of course he loved sports. He made it look so easy. The poor kid had to have me coach him in soccer for a few years, and that was his initiation to competition. And he thrived on it. He played for a select soccer team in North Carolina in 2000 when he was like 8 years old, and they won the State Championship and he got a gold medal. When we moved to TX and it became clear that I had used up my soccer knowledge, he started to play for the Classics. He was a play-up that first year, telling me its not the size of the dog in the fight its the size of the fight in the dog. After a few years of that he went on to basketball and hockey for a couple years, playing on championship teams in both, and scoring the winning goal in sudden death OT in the championship game for his hockey team one year.

 

From there, we move on to 7th grade and......finally, after throwing him a million passes in the front yard, football. Like his life, his football career was like a bright shooting star. He was a fast little wide receiver and his first year he had touchdowns in his last four games. The next year, during preseason practice, on the first day of wearing cleats he caught his spikes in a drill and tore his ACL. But as a testament to his work ethic, within 6 months of surgery for the torn ACL, he came back to run track and was awarded Track Athlete of the Year. He had re-habbed, trained and fought hard to come back. And I knew that his comeback from cancer would be no less amazing.

 

But this disease does not fight fair. It does not let you beat it in a race, it does not let you tackle it and smash it to the ground. It cheats and lies.

 

The reason I go on is because, like you all, 9 months ago I did not know that this world even exists. I didn't know that 12,000 CHILDREN each year fight this disease. 33 per day are told. Although survival rates are going up, it is still the leading cause of death from disease for our children. And, to be honest, I lost my Dad to cancer at 67, but that is so much easier to accept, after he lead his life, saw his grandkids, etc. And the funding for Childhood Cancer is so small compared to adult research, it is a crime. Congress is making a big deal right now of a Childhood Cancer bill which will provide $150 million over 5 years, $30 mil per year, for research. That my friends, is about 2 hours of war cost and grossly inadequate. Not to be political on the right/wrong of the war, please dont take that from the statement. It is just that the word needs to go out.

 

The largest childhood cancer research group is CureSearch. They are funded by donations and grants, and in turn fund research for a cure. They get $ from MLB and the NHL, but not the NFL. My goal is to get a small foundation going, AJ's Warriors, and challenge the NFL to match whatever we can raise. Any contacts you guys may have within either the Bills, players, or NFL would be appreciated.

 

AJFlutie was his pick for our name on this board, because he loved the little guy when he was 7 or whatever. Had his jersey and wore it all the time. And we never posted much, but we were huge fans. I will never forget the last game we watched together. Still debating if we liked Edwards or not, AJ said he seems so bland. He was a great kid and huge Bills fan. He is my best friend. I miss him so much

 

AJ's Dad

 

 

http://www.stbaldricks.org/kids/kid_info.html?KidID=1063

[SABURZFAN]

this is depressing. nobody, especially children, should have to go through a painful ordeal that i've read in these posts. major props to Julie for doing what she did. as for AJ, it's unfortunate that the young man passed on. it isn't fair.

[Booster4324]

He was a great kid and huge Bills fan. He is my best friend. I miss him so much

 

AJ's Dad

http://www.stbaldricks.org/kids/kid_info.html?KidID=1063

 

My sincere condolences

[BarkLessWagMore]

Dear AJ's Dad -- what a beautiful testamant to AJ. My deepest condolences to you and your family.

[Pete]

Fight on Mira! Go Mira, go! Cheers to your wife for shaving her head. I hope and pray Mira is healthy soon

[Pete]

AJ- my deepest sympathies. I wish you and your family peace

[Nick in RaChaCha]

AJ

 

I'm sorry for your loss. Mira's mother told me recently that being a parent of a child with cancer is the most powerless feeling in the world.

 

My prayers go out to your family and every family who is knows your pain and loss.

 

Nick

[ajflutie]

AJ

 

I'm sorry for your loss. Mira's mother told me recently that being a parent of a child with cancer is the most powerless feeling in the world.

 

My prayers go out to your family and every family who is knows your pain and loss.

 

Nick

 

Thanks Nick, AJ was my son, I'm his Dad. Bob. There are too many stories like this out there man. Do everything you can to increase awareness, the doc's will take care of Mira. And the kid's never complain. They are amazing. We got to know so many of them. And AJ never once complained, never failed to say thanks Dr. whoeever. Even when we went home and there was nothing more to do, this 14 year old boy taught me things. Never whined, just said thats the way is it Dad, you have to play the cards you are dealt. And so much more. He was wise beyond his years. Take care and tell Mira's Mom and Dad to hang in there.....

[mcjeff215]

I too am glad your wife shaved her head, and wish we all would. My prayers and thoughts go out to you and your family, and I know that Mira will fight the fight. From personal experience, I know that cancer kids are amazing individuals.

 

Some months ago I posted a couple places on here about my son AJ, and his battle with cancer. I got some great responses from you guys, and a variety of thoughtful cards, shirts etc. Thanks to you all.

 

Well unfortunately, AJ left us on Jan 5, 2008. AJ was a normal, strong, healthy 14 year old getting ready to move to back to North Carolina and start high school. He was anxious about it, leaving his buddies, worried that North Carolina football programs would not rank as high as Texas football programs. He started getting sick just before our house hunting trip up there, and when we got back, on Fathers Day 2007, he was admitted to TX Childrens Hospital.

 

AJ truly was a remarkable young man. He was born during a blizzard in March 1993, and to this day I remember him not crying and breathing right after being born, and the doctor and nurses rushing around in the delivery room. But after he took that first breath, boy did he breath deep the rest of his life. He lived life. He was always smiling. He loved people, music, playing the guitar, animals, movies, good books. He thought. He had fun, he made people laugh, he did the right things, competed, and was simply just a joy to be around. He was the love of our lifes. To unabashedly steal from his sister Katelyn, AJ, you would say something to make me laugh or cry or think and I would just stare at you thinking how did you even think of that?†To keep stealing his best buddy Pablo said, AJs character was like the sun: brilliant, golden, and able to light up the whole world. Jimmy V would be proud of the way AJ lived.

 

Of course he loved sports. He made it look so easy. The poor kid had to have me coach him in soccer for a few years, and that was his initiation to competition. And he thrived on it. He played for a select soccer team in North Carolina in 2000 when he was like 8 years old, and they won the State Championship and he got a gold medal. When we moved to TX and it became clear that I had used up my soccer knowledge, he started to play for the Classics. He was a play-up that first year, telling me its not the size of the dog in the fight its the size of the fight in the dog. After a few years of that he went on to basketball and hockey for a couple years, playing on championship teams in both, and scoring the winning goal in sudden death OT in the championship game for his hockey team one year.

 

From there, we move on to 7th grade and......finally, after throwing him a million passes in the front yard, football. Like his life, his football career was like a bright shooting star. He was a fast little wide receiver and his first year he had touchdowns in his last four games. The next year, during preseason practice, on the first day of wearing cleats he caught his spikes in a drill and tore his ACL. But as a testament to his work ethic, within 6 months of surgery for the torn ACL, he came back to run track and was awarded Track Athlete of the Year. He had re-habbed, trained and fought hard to come back. And I knew that his comeback from cancer would be no less amazing.

 

But this disease does not fight fair. It does not let you beat it in a race, it does not let you tackle it and smash it to the ground. It cheats and lies.

 

The reason I go on is because, like you all, 9 months ago I did not know that this world even exists. I didn't know that 12,000 CHILDREN each year fight this disease. 33 per day are told. Although survival rates are going up, it is still the leading cause of death from disease for our children. And, to be honest, I lost my Dad to cancer at 67, but that is so much easier to accept, after he lead his life, saw his grandkids, etc. And the funding for Childhood Cancer is so small compared to adult research, it is a crime. Congress is making a big deal right now of a Childhood Cancer bill which will provide $150 million over 5 years, $30 mil per year, for research. That my friends, is about 2 hours of war cost and grossly inadequate. Not to be political on the right/wrong of the war, please dont take that from the statement. It is just that the word needs to go out.

 

The largest childhood cancer research group is CureSearch. They are funded by donations and grants, and in turn fund research for a cure. They get $ from MLB and the NHL, but not the NFL. My goal is to get a small foundation going, AJ's Warriors, and challenge the NFL to match whatever we can raise. Any contacts you guys may have within either the Bills, players, or NFL would be appreciated.

 

AJFlutie was his pick for our name on this board, because he loved the little guy when he was 7 or whatever. Had his jersey and wore it all the time. And we never posted much, but we were huge fans. I will never forget the last game we watched together. Still debating if we liked Edwards or not, AJ said he seems so bland. He was a great kid and huge Bills fan. He is my best friend. I miss him so much

 

AJ's Dad

http://www.stbaldricks.org/kids/kid_info.html?KidID=1063

 

 

Having two daughters of my own, this really hits home. Not sure there's anything I can say. Quite simply, I'm very, very sorry.

[Lori]

Thanks Nick, AJ was my son, I'm his Dad. Bob. There are too many stories like this out there man. Do everything you can to increase awareness, the doc's will take care of Mira. And the kid's never complain. They are amazing. We got to know so many of them. And AJ never once complained, never failed to say thanks Dr. whoeever. Even when we went home and there was nothing more to do, this 14 year old boy taught me things. Never whined, just said thats the way is it Dad, you have to play the cards you are dealt. And so much more. He was wise beyond his years. Take care and tell Mira's Mom and Dad to hang in there.....

Bob,

 

Yesterday, Campy's post brought me to tears. Tonight, yours did. I only wish it had been for the same reason.

 

Thoughts and prayers from all of us, man.

[In space no one can hear]

I too am glad your wife shaved her head, and wish we all would. My prayers and thoughts go out to you and your family, and I know that Mira will fight the fight. From personal experience, I know that cancer kids are amazing individuals.

 

Some months ago I posted a couple places on here about my son AJ, and his battle with cancer. I got some great responses from you guys, and a variety of thoughtful cards, shirts etc. Thanks to you all.

 

Well unfortunately, AJ left us on Jan 5, 2008. AJ was a normal, strong, healthy 14 year old getting ready to move to back to North Carolina and start high school. He was anxious about it, leaving his buddies, worried that North Carolina football programs would not rank as high as Texas football programs. He started getting sick just before our house hunting trip up there, and when we got back, on Fathers Day 2007, he was admitted to TX Childrens Hospital.

 

AJ truly was a remarkable young man. He was born during a blizzard in March 1993, and to this day I remember him not crying and breathing right after being born, and the doctor and nurses rushing around in the delivery room. But after he took that first breath, boy did he breath deep the rest of his life. He lived life. He was always smiling. He loved people, music, playing the guitar, animals, movies, good books. He thought. He had fun, he made people laugh, he did the right things, competed, and was simply just a joy to be around. He was the love of our lifes. To unabashedly steal from his sister Katelyn, AJ, you would say something to make me laugh or cry or think and I would just stare at you thinking how did you even think of that?†To keep stealing his best buddy Pablo said, AJs character was like the sun: brilliant, golden, and able to light up the whole world. Jimmy V would be proud of the way AJ lived.

 

Of course he loved sports. He made it look so easy. The poor kid had to have me coach him in soccer for a few years, and that was his initiation to competition. And he thrived on it. He played for a select soccer team in North Carolina in 2000 when he was like 8 years old, and they won the State Championship and he got a gold medal. When we moved to TX and it became clear that I had used up my soccer knowledge, he started to play for the Classics. He was a play-up that first year, telling me its not the size of the dog in the fight its the size of the fight in the dog. After a few years of that he went on to basketball and hockey for a couple years, playing on championship teams in both, and scoring the winning goal in sudden death OT in the championship game for his hockey team one year.

 

From there, we move on to 7th grade and......finally, after throwing him a million passes in the front yard, football. Like his life, his football career was like a bright shooting star. He was a fast little wide receiver and his first year he had touchdowns in his last four games. The next year, during preseason practice, on the first day of wearing cleats he caught his spikes in a drill and tore his ACL. But as a testament to his work ethic, within 6 months of surgery for the torn ACL, he came back to run track and was awarded Track Athlete of the Year. He had re-habbed, trained and fought hard to come back. And I knew that his comeback from cancer would be no less amazing.

 

But this disease does not fight fair. It does not let you beat it in a race, it does not let you tackle it and smash it to the ground. It cheats and lies.

 

The reason I go on is because, like you all, 9 months ago I did not know that this world even exists. I didn't know that 12,000 CHILDREN each year fight this disease. 33 per day are told. Although survival rates are going up, it is still the leading cause of death from disease for our children. And, to be honest, I lost my Dad to cancer at 67, but that is so much easier to accept, after he lead his life, saw his grandkids, etc. And the funding for Childhood Cancer is so small compared to adult research, it is a crime. Congress is making a big deal right now of a Childhood Cancer bill which will provide $150 million over 5 years, $30 mil per year, for research. That my friends, is about 2 hours of war cost and grossly inadequate. Not to be political on the right/wrong of the war, please dont take that from the statement. It is just that the word needs to go out.

 

The largest childhood cancer research group is CureSearch. They are funded by donations and grants, and in turn fund research for a cure. They get $ from MLB and the NHL, but not the NFL. My goal is to get a small foundation going, AJ's Warriors, and challenge the NFL to match whatever we can raise. Any contacts you guys may have within either the Bills, players, or NFL would be appreciated.

 

AJFlutie was his pick for our name on this board, because he loved the little guy when he was 7 or whatever. Had his jersey and wore it all the time. And we never posted much, but we were huge fans. I will never forget the last game we watched together. Still debating if we liked Edwards or not, AJ said he seems so bland. He was a great kid and huge Bills fan. He is my best friend. I miss him so much

 

AJ's Dad

http://www.stbaldricks.org/kids/kid_info.html?KidID=1063

 

 

Your testament to your son's life is beautiful.

 

Your words make him come alive to those that did not know him,

 

and I'm sure your actions will see to it that his spirit truly does live on.

 

Peace.

[Campy]

Your testament to your son's life is beautiful.

 

Your words make him come alive to those that did not know him,

 

and I'm sure your actions will see to it that his spirit truly does live on.

 

Peace.

My sentiments exactly, well said "In space."

 

I'm sorry to hear of your loss, Bob.

 

And Nick RaCha, we'll keep Mira in our thoughts and prayers.