Tuesday, January 29, 2013



Abbott Labs said...


Braden is going to get his ABT-751!!!!!

Let that sink in for a minute.....

It's taken me quite awhile to let it sink in myself!!

There are no words, no words...

No way to thank the Hero that saved our son!

I bet you are wondering who the Hero was that gave our son a chance for more time...

Well, as you know,

Initially, Abbott Labs was responding to me while I was waging my one-mommy war to fight for his full 3 years of ABT-751.

We were told on October 3, that CHOP had been notified that Abbott Labs had decided that they weren't going to fulfill their promise to give Braden his therapy of ABT-751 because they didn't have adequate supply,

and they weren't going to make anymore.

I can only suppose that they had no interest in spending a bunch of money making it

after all...

it's just an eight year old kid.

SO..they just decided to tell Braden that "unfortunately", after a certain date, they would not have supply of the medication any longer".

That date was June of 2013.

Let me just state what Abbott must have missed when they made that decision. 

Braden is not taking this drug just for kicks and giggles,

but to treat...cANCER!!

Yes, I admit that I can't prove that the ABT-751 is what is keeping him in a second remission, but they cannot prove it is NOT!

I'm not taking a risk with my son's life, we have fought too hard to get to this point!

BUT I couldn't do a damn thing about it because Abbott Labs just decided they weren't going to let him have it anymore.

They took their ball and went home!

They decided that he would just have to roll the dice and see if he lived or died.

But, they would NEVER even KNOW if he died.

How you sleep at night knowing you were not going to give a child the drug he needed to fight cancer??

How do you look at yourself in the mirror knowing you may be putting his life in danger just because it is no longer convenient for you to make his medication?

It's beyond my ability to comprehend such an act!!

It's simply inconceivable!!

There's a special place in hell for anyone who would do that.

After I had been waging my one mommy war against them for a bit (and at least holding my ground), I hadn't heard back after asking for an update,

and I started freaking out.

I knew the reality was that it was highly unlikely they were ever going to spend the huge amount of money needed to make enough supply for Braden to receive the 14 months of ABT-751 they were trying to take away from him.

It didn't benefit them, only Braden,

which, apparently, was not incentive enough for them to continue OR they would have never said they were going to stop making the drug that may be keeping him alive.

Our son had fought too hard and been through entirely too much for me to just let them quit without a fuss.

When I hadn't heard back, I was scared that was the end of "possible" and the beginning of "we're blowing you off".

And I started feeling a lot like Glenn Close in fatal attraction! LOL!!

So, I began thinking

(which is always dangerous) :) 

And I thought and thought about who I could ask to give me advice.

I know this one guy...

No, not Tony Soprano,

another guy... ;)

and I wondered if he might be able to help me figure out how to help Braden.

When I was a teacher, I had the cutest, sweetest little girl in my class. 

I seriously loved this child...her name was Kelsey.  She truly had the kindest heart and gave the biggest hugs! SUCH a sugar!!

Her parents were extremely supportive and involved in school, and I adored them as well!

She grew up and became an even more amazing young woman, and

her dad became a United States Senator.

Jerry Moran

US Senator from Kansas.

A few years ago, I learned that Senator Moran had been the first Congressman to sign a piece of legislation for our children with cancer, when he was in the House of Representatives.

He had also graciously spoken at a childhood cancer rally we held with the Team Will Cycling Group in KC.

Senator Moran had been an amazing support for our children with cancer and

he and his beautiful family had been hoping and praying for Braden since he was diagnosed.

So I reached out to Senator Moran and told him the story of Braden, Abbott Labs, ABT-751, what I felt was a huge injustice,

and I asked if he could help me help Braden.

He didn't even pause to think about it...he literally just swooped in and began working on it with his staff.

Jerry Moran is our Hero! 

Without his work and efforts, our son would NOT have gotten his ABT-751 supply extended.

I can't prove they would have said no, but it sure felt like it was going that direction.

Senator Moran didn't have to help us.

I would have understood, it's not like there aren't a few million things going on in DC right now :)

but, he did,

and he and his staff have worked TIRELESSLY to help Braden get his medication!

You can say and believe whatever you want about the political world, but I am here to stand strong at the top of Mount HOPE and shout to the world that Senator Moran is an incredible person who helps children with cancer, one of those being my son!

I will forever believe that Senator Moran's compassion and supportive voice are the reason Braden is going to receive the remaining supply of his ABT-751.

Senator Moran gave Braden a chance to turn 9

and 10,

and 11, and 12...

and beyond.

He gave him HOPE for a future!!

I don't know how you adequately thank someone for something like this.

Senator Moran called me in person to give me the amazing news and I have to tell you...

I had a hard time coming up with words to respond.

(soooo not me!) :)

I didn't think we would ever get this result,

I hoped,

but I'm not sure I believed.

I will never doubt the power of hope, prayer, and God again!!

Thank you to each of you who hoped and prayed for this result with us.

And thank you to Senator Jerry Moran for being our Hero!!