Heroes....

UNBELIEVABLE!!!!!!

Abbott Labs said...

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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!!

TAKE THAT cANCER!!!

ABT-751...

This is the third part of the second remission story. And I'll give away the ending...

there isn't an ending yet...

and that rocks!!!

Braden's Second Grade Picture...MIRACLE!

January 27, it will be the two year mark for Braden to be in a second remission!!  HOLY MOLY!! Incredible!

Thank you Lord!

After the chemo to get him in second remission,

and then the immunotherapy...

came a time in our lives when we were faced with few options again.

The reality and truth is that Braden did not get all of his immunotherapy because of his reactions and all of the mishaps.

And...he was the first child in the world to receive it in the case of a relapse so there was no data showing it would make a difference and work for him...

yea...all that and we have no way to know if it worked or not...

seriously!

It was another "just jump" moment when we asked for it.

SO...we were looking for something else, something that would have limited side effects yet could offer the chance to seek out and finish off any hidden cells.

I had an idea...and Dr. Mosse had the same idea. :)

ABT-751.

It was offered to us before his 8 months of Irinotecan and Temodar as our "last ditch effort" to buy time.

What is ABT-751...WELL...

it's an investigation medication made by Abbott Labs.  It is a chemo, but it's a "smart chemo" and works a little differently than traditional chemo.

First of all, Braden drinks it.  5ml for 7 days, then two weeks off.  It's all done from home and arrives via Fed X! :)

And his counts are not seriously compromised and he lives life just like any other kiddo.

It rocks...

and yes there are nasty side effects but so much fewer than the other treatments, it seems like Ibuprofen to us!

Although the label says, and I quote...

"Wear glasses, mask and gown if potential exists for splashing/spattering exists".

Ummm....but Braden's supposed to drink it???

Really???

And...we are THRILLED to have the opportunity for him to take it!!!

This is the EASIEST treatment he's ever done.

cAncer stinks...and its treatments stink too...period!


A Day At The Park...Detour!

ABT-751 goes into the nb cancer cell and there is something in the drug or about the drug?? (what I don't know) that doesn't allow the cancer cell to pump the chemo back out as happens with many refractory disease cells.  So it sticks in the cell and kills it.

MUCH more targeted than regular chemo.

SO...Dr. Mosse went about applying for ABT-751 for Braden.

But...because "Seriously, this is my life!" it didn't go smoothly. :)

You HAD to know that was coming...unless this is your first day read of this blog! ;)

Abbott Labs told Dr. Mosse that they were going to stop making ABT-751.  It apparently had not helped a large enough population to be financially rewarding.

Don't even get me started on the injustice of THAT!

Okay...I have to...but I'll be quick...ish.

cAncer is the #1 killer of children by disease yet only ONE....ONE drug has been developed for treatment of chidhood cancer since the 1980's...

Over 50 have been developed for adults in that same time period.

The rationale provided for that discrepency is that our kids "incidentally benefit" from adult cancer drugs.

PROBLEM is...

Scientists have proven beyond a shadow of a doubt that childhood cancers are different in their histology and pathology than their adult counterparts.

Medulablastoma, for example...kids cancer cells are DIFFERENT than adult cells under a microscope, but...

ALL we have to treat childhood disease is adult cancer drugs.

And we wonder why it isn't working?

I'm no doctor or researcher, but

DUHHHH!!! Seems pretty easy to figure out to me!!

And I'm blonde!! LOL!!

Our foundation is trying to change that...we fund research for targeted treatments to shut down the activators of childhood cancer and to find out what those activators are...our philosophy is simple....

It's just like Smoky Bear said, "prevent the forest fire".

Why spend millions of dollars trying to put the raging fire out..PREVENT it...shut it down before it gets out of control.

AND...if we can do that with childhood cancers...scientists believe...

we could perhaps PREVENT it from occuring in adults as well.

I would call that a DIRECT benefit...not "incidental".

SO...I'm pretty sure the reason our kids don't have treatment options isn't because that "incidental benefit" thing is such a great deal...

I'm guess is boils down to $...

or maybe $...

or power...or perhaps...

$... ;)

I digress...(but feel better because I said it). :)


Well, Dr. Mosse was able to appeal and get Abbott Labs to allow Braden to be the last child to be accepted for ABT-751.

Last child in the world. AMAZING!


He makes me smile!

Abbott Labs promised to make his medication for 3 years. 

WOO HOOO!!

The thought of not having to make a planned therapy decision for 3 years was incredible!!

We just hoped it would work.

Braden started ABT-751 in August of 2011 a little over a month after ending his immunotherapy.

He's been on it since and his scans have continued to show that he is in remission during the time he has been taking it.

That seems like a simple sentence, but the miracle behind those few words is immeasurable.

This past October, when we went in for scans (we scan in Philly every 3 months), Dr. Mosse told us that unfortunately Abbott had decided that they would not have enough medication for 3 years and his therapy would end in June of 2012...just a few months away.

14 months shy of what they promised him.

WHAT????????????????

They said 3 years...and this is our son's life.

I asked Dr. Mosse about other options, but there was nothing.

I stewed....

and stewed....

and then decided that wasn't right...

and I had to fight for it.


Silly boy!

It was our son's life that was in the balance.

Dr. Mosse said there was no battle to wage, they just weren't making it anymore for adults or children.  She thought my energy would be better spent on something else.

I disagreed.

SO...I contacted Abbott Labs. (have I mentioned I'm stubborn?)

And I politely asked for them to reconsider.

Really....I was polite!

And I didn't even curse (a lot)!! :)

I told them Braden's story...

and I told them that I could not prove that the reason he remained in a second remission was because of the ABT-751, but...

they could not prove that it wasn't.

Braden's life could well depend on him receiving the full 3 years of his therapy...

Additionally, I told them that they wouldn't even know if Braden died, but

our family would. And we would be the ones to live with empty arms and broken hearts.

Since October, they have been "considering".

Well...time is ticking...and I kept following up and checking in to see how things were progressing.

NOT too much...really...just enough that they knew I was serious, just 2-3 emails over 2 months.

Stalking wouldn't help me!! LOL!! 

(but if that is all it took, I would have been all over it...you can believe that!) :)

Love them!

Then they quit responding to my emails.

Momma Bear was panicking inside.

It is highly illogical to think that one momma can beat a pharmaceutical company with thousands  of attorneys and billions of dollars...

and .000000001% compassion for a child who could die...

SO...I searched for a hero to help us fight this company...and I found one.

BEST hero a family could ever hope for. 

And Abbott Labs has once again been responsive, thanks to this hero.

BUT...I don't have a final answer from them yet...I'm trying to wait very patiently

(and by the way...I SUCK at the patience thing),

but I have HOPE!

So who is the hero?  Who is the person stepping up and helping us ask for them to reconsider their position?

No, it's not a lawsuit...

........I'm gonna wait and tell you who it is a little later in this journey...

...I know...soo mean of me! :) 

And you will cheer when you hear who this hero is...and you will believe in people doing the right thing just because they can.

Hopefully, we will hear VERY soon!!! 

My HOPE is more days like this one!

My blood pressure can't take too much more of this worrying and wondering.

Seriously.

We are fighting for more time...every day where we can make memories together like the ones you have seen in the pictures on this page today, is priceless!

HOPE....TAKE THAT cANCER!!!