I have copied and pasted my post on Braden's Caring Bridge Site from February 17, 2010.
It's the post in which I told everyone I had breast cancer.
I didn't have the energy to call everyone. I did send an email to my closest friends the night before the post. The only call I made was to one of my brothers and I asked him to call my dad. I just couldn't do it. Everyone found out at the same time, with a handful of exceptions. Not really something I'm proud of, but it is what I had the energy to do.
I remember being mad, just mad...and so worried about how I was going to find time to go to my appointments while Braden was fighting for his life and had a less than 10% chance of survival. I didn't give a crap about MY cancer, my only heartache and fear was for HIS cancer!
I knew how long and drawn out this process was, and I didn't want to miss a minute with Braden because we were sure he was going to die. I knew I would be in the hospital a lot but I was determined to get up and keep going so I didn't miss a single minute longer than I had to miss!
I was looking through my CB posts tonight and found this one...I hadn't planned on finding it, it just appeared.
I thought it would be an interesting one to share with you!!
We initially thought nodes were not involved, a couple of days after my mastectomy, we learned they were involved so I had a second surgery to remove more lymphnodes. That earned me chemotherapy, a lymphodema risk, and the loss of my long hair. That was what was the hardest for me. Otherwise, GAME ON!!!
It's hard to believe this was three years ago, it seems like yesterday...
...and at the same time, it seems like a millions years ago.
I still stand by my words, focus on Braden and do not blame God. He didn't give EITHER of us cAncer!!
Hugs! :)
Hi Army,
I know many of you worry when I post earlier than I had planned but everything is okay with Braden. I do have news for you though and I thought it might be better absorbed tonight when many of you are at home rather than tomorrow at work. It probably just easier to read it when you have more time.
Five days before we left for Braden’s second MIBG in Philly (beginning of January) I found a lump in my right breast. I went to see my OB before we left, who also felt it. We began all of the testing once we returned from Philly. This Monday, I got the call that the biopsy results were in and it was a malignant mass. It is a stage 1, grade 2, invasive ductal carcinoma. The pathologies came back the day we met with the breast surgeon and it was relatively good news. For those of you who have gone through breast cancer or know someone who has, this tumor is receptive to estrogen and progesterone, and the HER2-neu is negative (level was positive one). The ki67 level was 9% and they want it to be less than 10%. If you are like me and really wouldn’t know what those meant before now, this website was very helpful to me in understanding what this stuff really is.http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_breast_cancer_diagnosed_5.asp
if you are interested in more info. The bottom line is that the pathologies were favorable for a good prognosis.
I have elected to have a double mastectomy. We don’t think there is cancer in the left breast yet but I do not want to take a chance of developing it later on in life. Once you have breast cancer in one breast, you have an increased chance of getting it in the other one. I will have an MRI next week to help us confirm that the left breast looks okay and get more information about the lymphnodes. Right now we do not believe they look like they have cancer in them. The MRI will tell us more and when they do the surgery they will do a sentinel node biopsy to find out for certain. If you want to pray for something specifically, pray it is not in the nodes. I stand a better chance of not needing chemo if it’s not there. I’m not afraid of chemo but you know as well as I do that I would FAR rather spend my time with Braden and Zach right now than hooked up to an IV pole. We still do not know how long Braden has left and I don’t want to miss a minute. We will figure out what other treatments I need post surgery and with additional genetics information I will be getting as well.
I will meet with a genetic counselor in the hope we can learn other information through testing that will help determine treatment after surgery and whether or not this could be something that the boys could get later. Yes, males can get breast cancer. I do not have a history of breast cancer in my family but I could be the first to start the chain. I will meet with the plastic surgeon and genetic counselor the day after we return from Philly. We think surgery will be in mid to late March. I am aggressively going after this cancer! I am determined to win this battle! I have HAD it with cancer!
Who knows why these things happen. I’ve seen a lot of people put themselves through endless weeks and months of agony wondering why things happen. The truth is, I can ask that question but I’m not going to get an answer in this lifetime so it’s pretty much wasted energy to even wonder. I prefer to focus on enjoying EVERY moment we have today and letting the big questions/decisions be handled by God. I am NOT scared of this cancer. I have spent 2 years terrified for Braden and I’m going to stick with that and continue to be terrified for Braden but THIS cancer does not scare me. It’s tough to explain but when you are told you son who has only lived for five years (2 of those years being poked and prodded, having chemo/transplant/radiation, numerous surgeries and procedures and done to him) now has a relapsing, refractory disease for which there is no known cure, this just doesn’t seem that bad. It is certainly not a preferred diagnosis or future but the word the describes how I feel about things right now is simply determined. I am going to beat this cancer and it is going to be sorry it EVER messed with momma bear.
So how can the army help? First of all, please try to not be angry at God. This is not His work!! Performing miracles like having Braden Hofen with us today, feeling good and acting like a little boy should because he feels well enough to do it IS His work! We have SO MANY BLESSINGS! I know many of you will be angry but I am asking you to instead look at the glorious miracle God has given us. What I have is very beatable! Braden’s is not very beatable but he is STILL HERE! All in all…not bad!! So be thankful for us, appreciate life with us and celebrate each moment. I knew good and well that this was the likely diagnosis when I wrote the post about Braden’s Race on April 18. I was not kidding when I said that I want us to all celebrate together--even if you can’t be here for the event that day--we need to celebrate together. Yup--there’s bad stuff, yup--we are getting plenty BUT no matter what, we are thankful for what we have TODAY! I have said all along that none of us knows how much time we have--LIVE IT!!!!!!!!!!! Take detours and celebrate!! KEEP HOPING AND PRAYING FOR BRADEN! When we go back to Philly on March 2-3, we simply have to get good news again or we are done. We need to focus on that right now--it’s the priority--FOCUS ON BRADEN!! I believe in Braden and I believe in the power of thoughts and prayers and we have GOT to continue ours for him. Please keep spreading the word about Braden and continue to believe in him and in miracles!! I learned how to be brave and how to fight from my 5 year old, I also learned how to live every moment (even the cruddy ones) with joy and gratitude in my heart! We can do this too army--we can!!
Much love to you all!
Deliece
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Sunday, March 3, 2013
Tuesday, January 29, 2013
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!!!
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!!!
Tuesday, January 22, 2013
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!!!
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!
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!
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.
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!) :)
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 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!!!
there isn't an ending yet...
and that rocks!!!
 |
| 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!
 |
| 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!
 |
| 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! |
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! |
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!!!
Monday, January 21, 2013
The Fight For Hope...
“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.”
---Martin Luther King, Jr.
That is what we are doing.
After Braden became immune to multiple therapies, the doctors told us that all we could do is hope for some additional time with him. That he would not achieve a second remission.
I was broken...completely.
No hope.
Just complete despair.
Then one night, I had a dream....I am certain it was my mom talking to me from Heaven...
There is no other explanation for why this dream would have happened...I believe in "angel whispers".
I woke up in a start, sat up and thought, "Irinotecan and Temodar!!"
The day before this dream, I had an email convo with Philly in which we agreed that Braden should do ABT-751 to try to hold the remaining disease stable.
I woke up after that dream and fired an email off to Dr. Mosse and asked if it would be reasonable and if we could do Irinotecan and Temodar (two chemos).
The gamble was huge. Braden's disease had proven to be refractory to chemo and I was asking for chemo.
We had discussed these two drugs in August of 2009 when he first relapsed. After his disease proved refractory to chemo, we had moved past that thought.
Braden's hair had grown back, and he had the most beautiful big, loopy curls.
Dr. Mosse said it had worked for some kids, and if we wanted to try it, we could.
Another one of those impossible decisions.
1. Do nothing and spend your time without him having the effects of chemo. But death was a matter of time.
2. Do ABT-751 and hope to keep him stable for a longer period of time (the longest we were told a child had made it in a situation similar to Braden's was 2 years...which seemed like an eternity to us that that moment).
3. Try the chemo. And maybe...maybe...it would kill those cells.
BUT...if #3 didn't work, and his disease progressed, choice #2 was out of the question and we were back to #1.
I just knew we needed to do #3...I "KNEW"...but...
It is SOO hard to make that choice. We could give away 2 years of time if I was wrong.
One of the biggest things to me that was that I knew he would lose his hair and I didn't want him to die bald.
It was a visible sign that cAncer had been the reason and that really bothered me.
Stupid, I know...but it did.
A lot of life can happen in two years...two more birthdays, a chance to lose his first tooth, friends, memories that would last forever...
How do you make a choice like that??
You just jump....
You can't dip your toe in the water and see how it's going to feel...
There is no crystal ball...
You just jump.
I listened to the angel whispers and,
I looked at our son and saw his fight. Braden wasn't done...he was still fighting with everything he had.
“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
Martin Luther King, Jr.
Oh my sweet boy...
How your fight, strength, faith, and courage inspire me....
and frighten me.
It would be one hell of a bad deal if I was wrong.
We decided to go for it.
The first two months were nasty but compared to the chemo he had done before, not that bad.
It was outpatient...we had never had outpatient chemo...sleeping at home at night! YES!
We got to play at home, go to the park, and have a life...
And I watched those beautiful curls fall out. I kept several curls when we finally cut it and shave his head again.
Damn cAncer.
Then we scanned...I held my breath...
And the one remaining piece of tumor near his liver was shrinking...
We kept going....
---Martin Luther King, Jr.
That is what we are doing.
After Braden became immune to multiple therapies, the doctors told us that all we could do is hope for some additional time with him. That he would not achieve a second remission.
I was broken...completely.
No hope.
Just complete despair.
Then one night, I had a dream....I am certain it was my mom talking to me from Heaven...
There is no other explanation for why this dream would have happened...I believe in "angel whispers".
I woke up in a start, sat up and thought, "Irinotecan and Temodar!!"
The day before this dream, I had an email convo with Philly in which we agreed that Braden should do ABT-751 to try to hold the remaining disease stable.
I woke up after that dream and fired an email off to Dr. Mosse and asked if it would be reasonable and if we could do Irinotecan and Temodar (two chemos).
The gamble was huge. Braden's disease had proven to be refractory to chemo and I was asking for chemo.
We had discussed these two drugs in August of 2009 when he first relapsed. After his disease proved refractory to chemo, we had moved past that thought.
Braden's hair had grown back, and he had the most beautiful big, loopy curls.Dr. Mosse said it had worked for some kids, and if we wanted to try it, we could.
Another one of those impossible decisions.
1. Do nothing and spend your time without him having the effects of chemo. But death was a matter of time.
2. Do ABT-751 and hope to keep him stable for a longer period of time (the longest we were told a child had made it in a situation similar to Braden's was 2 years...which seemed like an eternity to us that that moment).
3. Try the chemo. And maybe...maybe...it would kill those cells.
BUT...if #3 didn't work, and his disease progressed, choice #2 was out of the question and we were back to #1.
I just knew we needed to do #3...I "KNEW"...but...
It is SOO hard to make that choice. We could give away 2 years of time if I was wrong.
One of the biggest things to me that was that I knew he would lose his hair and I didn't want him to die bald.
It was a visible sign that cAncer had been the reason and that really bothered me.
Stupid, I know...but it did.
A lot of life can happen in two years...two more birthdays, a chance to lose his first tooth, friends, memories that would last forever...
How do you make a choice like that??
You just jump....
You can't dip your toe in the water and see how it's going to feel...
There is no crystal ball...
You just jump.
I listened to the angel whispers and,
I looked at our son and saw his fight. Braden wasn't done...he was still fighting with everything he had.
“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
Martin Luther King, Jr.
Oh my sweet boy...
How your fight, strength, faith, and courage inspire me....
and frighten me.
It would be one hell of a bad deal if I was wrong.
We decided to go for it.
The first two months were nasty but compared to the chemo he had done before, not that bad.
It was outpatient...we had never had outpatient chemo...sleeping at home at night! YES!
We got to play at home, go to the park, and have a life...
And I watched those beautiful curls fall out. I kept several curls when we finally cut it and shave his head again.
Damn cAncer.
Then we scanned...I held my breath...
And the one remaining piece of tumor near his liver was shrinking...
We kept going....
“We must accept finite disappointment, but never lose infinite hope.”
Martin Luther King, Jr
8 months of chemo.
It got really bad.
Braden's gut is colonized with c-diff and the Irinotecan was wreaking havoc on his gut.
One clinic day, our oncologist tried to convince me to stop...
I said no.
So he sent in another doctor who tried to convince me to try to stop...
I said no.
He came back in the room and I told him "nice try"...
and perhaps I mentioned he could go to hell...
I'm pretty sure I did, but I did it with a smile so that makes it better right? LOL!
Actually, both our doc and I got a good giggle out of it!!
It was this simple...if we stop, he dies.
During our multiple rounds of chemo, sometimes his scans would be improved, sometimes stable every three to four rounds when we scanned.
But, again, I knew if we stopped, it would take over and he would die.
Then, January 27, 2011...Dr. Mosse walked in after scans...I was holding my breath because I had watched his scan images during the scan and it looked different.
I was preparing myself for the bad news.
And....she said,
I am very happy to be able to tell you that we see no evidence of cancer on Braden's scans!
I said in a small, shocked whisper, "I'm going to need you to say that again!"
Then tears...every single one of us in that room, except Braden...
who just wanted to go play.
It wasn't the end...just because scans show no evidence of disease, does not mean cancer is not there.
It just means the scan cannot pick it up because the current technology isn't good enough to get to a small enough level.
We would continue to fight....
and we continue today.
But that day was a huge victory.
“Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.”
Martin Luther King Jr.
HOPE....TAKE THAT cANCER!
And Happy Birthday Dr. King. Thank you for your courage, fight, wisdom, love and vision.
Monday, January 7, 2013
Detours...
Websters defines detours as..
Okay...be honest, how many of us started at LEAST one high school or college paper that way??
I did. :)
And my High School English teacher was not amused.
Sorry Mrs. Schmeller!
Upon further review...she was not amused by anything. :)
The dictionary reference is probably a bad idea in 2013 since
they are apparently archaic now.
But, I can totally picture ours at my house when I was growing up.
It sat on the shelf right beside our circa 1965 set of World Book Encyclopedias,
that I'm pretty sure a door to door salesman convinced my mom we HAD to have if her children stood any chance of being educated and well rounded!
And I'm too lazy to do it the 2013 way and pull up another browser to see what Wikipedia has to say...
So I'll do what the "everybody does", make my own up and post it on the internet,
then it must be factually true! ;)
Actually, let me just explain what happened to start the whole "detour" thing...
When Braden was fighting his first battle with neuroblastoma, all of his chemo was "high dose" and had to be given to him inpatient.
Basically, we lived at the hospital for about a year and a half. We RARELY came home and when we did, it was only hours or a couple of days before he spiked a fever or the next round, or surgery, or about one out of a million other things that required us to go back and spend more days at the hospital.
We learned quickly that even if you finished chemo at 11:00 at night and the doc said you could go home or spend the night at the hospital and leave in the morning,
you chose HOME!
and slept in a bed...
I always slept in Braden's little itty bitty hospital bed with him because he wouldn't let me get far away. He had to be touching me the entire time. Every minute of every day. It was actually really sweet!
I had to call the nurses to sit with him when I had to pee because he couldn't stand for me to leave and he would cry and cry while I was in the bathroom. Brian used to have to come up to the hospital to sit with him so I could take a shower every 100th day or so! ;)
Well...one of those nights, we left the hospital late and as Braden and I were pulling out of the hospital, we were met by a detour sign.
I wasn't happy to see it.
It was late at night, I was tired, stinky, wrinkly, and had a son in the back seat with his feeding tube running with a limited amount of feeds to flow through with a limited battery pack and Braden was equally tired...although less stinky and wrinkly.
A detour would mean the long way around something and that would take more time.
UGHHHHHH!!!!
We followed the detour,
and it took us past an historical part of Kansas City called Crown Center.
It is filled with lights and water features.
As soon as Braden spied it, he squealed, "PRETTY WATER!"
(he has a thing for water features...it's pretty much his favorite thing in the world)
Then he yelled, "WIGHTS"!
(he has a little l/w speech thing) :)
And he was clapping his hands and screaming and laughing REALLY hard!!
Well...no one was around, I didn't see any police cars so I flipped a u-turn in the middle of this usually very busy street.
He continued to laugh and scream and clap,
except now it was even louder and happier!
SO...
I turned another u-turn
by now, I was laughing, crying, clapping and turning around to talk to Braden in the backseat.
We did a "few" u-turns...maybe 6 or 7...
or more...
maybe a LOT more...
He was sooooo happy...not many things made him laugh that hard at that time in his life...
And it was wonderful until...
I saw something move out of the corner of my eye.
I looked in that direction and saw...
a bus stop...
filled with people waiting for the bus.
When I made eye contact with them, they quickly looked away!
Whoops!!
Not as alone as I thought we were! :)
I think they were a little scared of the blonde lady in the white SUV who was spinning circles and laughing, crying and talking to the back seat...
And that is how "detours" began for us.
You never know what wonderful things can happen,
How much joy and happiness you can find,
by taking an unexpected turn (even if you weren't really looking forward to that turn).
We try to do at least ONE simple thing every day that is a detour....something to just make us laugh and giggle and enjoy our time together.
Some days it's a trip to the park,
Others popcorn and a movie at home,
family game night,
reading books together (currently it's Horton Halfpot--awesome book),
eating dessert before dinner,
the best detours are free!!
Last week, I had lunch with my friend, Christine, (that was a detour for both of us...we rarely get to spend time together!).
After lunch, I was taking her home and we realized we we had just pulled up behind another friend.
We hadn't seen her for awhile and we were excited!!
So I honked and we waved.
Then while at a looooong stoplight, our friend sent a text to Christine that said, "Chinese fire drill?"
Never throw down a challenge to be silly....
I'm all OVER it!!
And this friend would be JUST the person to reciprocate!
SO, at the next stoplight, I threw my car into park and SPRINTED up to her car,
She opened the door and almost got out,
but we were laughing so hard and we didn't have that much time,
so, between laughs, we just gave each other a high five and blew kisses!
Then I sprinted back to my car.
Just in time to throw it in drive and make the green light...
Okay, maybe I was a "little" late for that light, but it was worth it!
We got many strange looks.
That happens to me a lot.
We're early into this blog thing, but that was probably apparent long ago. :)
Life should be filled with impromptu, silly moments,
those are detours!
Even when you are a 47 year old mom!
For me, it's what makes life worth living,
because it is living life!
Tada...detours,
definied ala Deliece.
Somehow, I don't think Webster would have the same definition. :)
Need a New Year's Resolution...
try a detour-a-day.
Free,
you can still eat chocolate,
drink wine,
and you don't have to go to the gym!
Again...Tada!!!
(oh and I have been working to try to figure this whole blog thing out and I added several really awesome links to the right). The top one is a story by JiaoJiao Shen from Kansas City's NBC Action 41 News. She is an AMAZING advocate for our children with cancer and she did a beautiful story that really sums up 5 years in 3 minutes. You will laugh...guaranteed...my boy has SKILLS! (you'll know what I mean when you watch it)!
Hugs!
Okay...be honest, how many of us started at LEAST one high school or college paper that way??
I did. :)
And my High School English teacher was not amused.
Sorry Mrs. Schmeller!
Upon further review...she was not amused by anything. :)
The dictionary reference is probably a bad idea in 2013 since
they are apparently archaic now.
But, I can totally picture ours at my house when I was growing up.
It sat on the shelf right beside our circa 1965 set of World Book Encyclopedias,
that I'm pretty sure a door to door salesman convinced my mom we HAD to have if her children stood any chance of being educated and well rounded!
And I'm too lazy to do it the 2013 way and pull up another browser to see what Wikipedia has to say...
So I'll do what the "everybody does", make my own up and post it on the internet,
then it must be factually true! ;)
Actually, let me just explain what happened to start the whole "detour" thing...
When Braden was fighting his first battle with neuroblastoma, all of his chemo was "high dose" and had to be given to him inpatient.
Basically, we lived at the hospital for about a year and a half. We RARELY came home and when we did, it was only hours or a couple of days before he spiked a fever or the next round, or surgery, or about one out of a million other things that required us to go back and spend more days at the hospital.
We learned quickly that even if you finished chemo at 11:00 at night and the doc said you could go home or spend the night at the hospital and leave in the morning,
you chose HOME!
and slept in a bed...
I always slept in Braden's little itty bitty hospital bed with him because he wouldn't let me get far away. He had to be touching me the entire time. Every minute of every day. It was actually really sweet!
I had to call the nurses to sit with him when I had to pee because he couldn't stand for me to leave and he would cry and cry while I was in the bathroom. Brian used to have to come up to the hospital to sit with him so I could take a shower every 100th day or so! ;)
Well...one of those nights, we left the hospital late and as Braden and I were pulling out of the hospital, we were met by a detour sign.
I wasn't happy to see it.
It was late at night, I was tired, stinky, wrinkly, and had a son in the back seat with his feeding tube running with a limited amount of feeds to flow through with a limited battery pack and Braden was equally tired...although less stinky and wrinkly.A detour would mean the long way around something and that would take more time.
UGHHHHHH!!!!
We followed the detour,
and it took us past an historical part of Kansas City called Crown Center.
It is filled with lights and water features.
As soon as Braden spied it, he squealed, "PRETTY WATER!"
(he has a thing for water features...it's pretty much his favorite thing in the world)
Then he yelled, "WIGHTS"!
(he has a little l/w speech thing) :)
And he was clapping his hands and screaming and laughing REALLY hard!!
Well...no one was around, I didn't see any police cars so I flipped a u-turn in the middle of this usually very busy street.
He continued to laugh and scream and clap,
except now it was even louder and happier!
SO...
I turned another u-turn
by now, I was laughing, crying, clapping and turning around to talk to Braden in the backseat.
We did a "few" u-turns...maybe 6 or 7...
or more...
maybe a LOT more...
He was sooooo happy...not many things made him laugh that hard at that time in his life...
And it was wonderful until...
I saw something move out of the corner of my eye.
I looked in that direction and saw...
a bus stop...
filled with people waiting for the bus.
When I made eye contact with them, they quickly looked away!
Whoops!!
Not as alone as I thought we were! :)
I think they were a little scared of the blonde lady in the white SUV who was spinning circles and laughing, crying and talking to the back seat...
And that is how "detours" began for us.
You never know what wonderful things can happen,
How much joy and happiness you can find,
by taking an unexpected turn (even if you weren't really looking forward to that turn).
We try to do at least ONE simple thing every day that is a detour....something to just make us laugh and giggle and enjoy our time together.
Some days it's a trip to the park,
Others popcorn and a movie at home,
family game night,
reading books together (currently it's Horton Halfpot--awesome book),
eating dessert before dinner,
the best detours are free!!
Last week, I had lunch with my friend, Christine, (that was a detour for both of us...we rarely get to spend time together!).
After lunch, I was taking her home and we realized we we had just pulled up behind another friend.
We hadn't seen her for awhile and we were excited!!
So I honked and we waved.
Then while at a looooong stoplight, our friend sent a text to Christine that said, "Chinese fire drill?"
Never throw down a challenge to be silly....
I'm all OVER it!!
And this friend would be JUST the person to reciprocate!
SO, at the next stoplight, I threw my car into park and SPRINTED up to her car,
She opened the door and almost got out,
but we were laughing so hard and we didn't have that much time,
so, between laughs, we just gave each other a high five and blew kisses!
Then I sprinted back to my car.
Just in time to throw it in drive and make the green light...
Okay, maybe I was a "little" late for that light, but it was worth it!
We got many strange looks.
That happens to me a lot.
We're early into this blog thing, but that was probably apparent long ago. :)
Life should be filled with impromptu, silly moments,
those are detours!
Even when you are a 47 year old mom!
For me, it's what makes life worth living,
because it is living life!
Tada...detours,
definied ala Deliece.
Somehow, I don't think Webster would have the same definition. :)
Need a New Year's Resolution...
try a detour-a-day.
Free,
you can still eat chocolate,
drink wine,
and you don't have to go to the gym!
Again...Tada!!!
(oh and I have been working to try to figure this whole blog thing out and I added several really awesome links to the right). The top one is a story by JiaoJiao Shen from Kansas City's NBC Action 41 News. She is an AMAZING advocate for our children with cancer and she did a beautiful story that really sums up 5 years in 3 minutes. You will laugh...guaranteed...my boy has SKILLS! (you'll know what I mean when you watch it)!
Hugs!
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