there isn't an ending yet...
and that rocks!!!
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| Braden's Second Grade Picture...MIRACLE! |
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!
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| A Day At The Park...Detour! |
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!
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| 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.
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| 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!) :)
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| Love them! |
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!!!
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| My HOPE is more days like this one! |
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!!!
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