Zach...

Today is a very special day.

It's Zach's 10th Birthday!!!

I remember April 3, 2003 like it was yesterday. I woke up to Brian video taping waking me up!! :)

His delivery was a planned c-section after Miranda's birth which was an emergency c-section. I didn't want to take ANY chances that normal delivery might cause complications.

I was SO over complications.  Miranda had died on August 1, 2001 and I had a miscarriage in between Miranda and Zach.

We SO wanted a baby!!

So off we went to the hospital, and a little after 12:30, Zachary Dean Hofen was born!

He cried immediately.  And he didn't stop crying, very often! :)

He cried so much that the nurses came in the middle of the night and asked if they could help. LOL!  This child hasn't stopped "talking" since he was born!!

We gave him a pacifier and he was much happier.

It was pure joy!! I didn't want to stop holding him because it was finally here. We finally had a beautiful, healthy baby!!

There were no words to describe the feeling of holding him for the first time. I looked at his face, and I was honestly terrified and completely in love.

I kept waiting for the other shoe to drop...something had to be wrong, it couldn't be that he was fine?

But he was, and as we held him, both Brian and I had tears.  Tears of joy and tears remembering the last time we had been in the c-section operating room when Miranda was born.

We were finally going to be able to take our child home with us rather than leaving the hospital with empty arms!!

And...I had NO idea what I was doing! I'm the youngest in my family and I had only changed a handful of diapers. We had to take a class to learn how to do the "basics".  LOL!!

Brian was the fastest swaddler in the class!! I wasn't one of the top ten!! :)

It's not like I was completely unprepared...

I had a Baby Alive when I was little!! :)

I fed her and gave her a bottle, she pooped and peed....

Okay, I confess, I stopped feeding her and putting water in her bottle because....well, it was gross and smelly and not something I enjoyed.

But I took GREAT care of my Mrs. Beasley doll!!...

I never lost her glasses and I took her for rides in my toy baby carriage all the time!!!

So what if I couldn't swaddle that doll in class!! LOL!

Brian and simply soaked in every minute after he was born. It was total happiness!  After we had so much trouble getting pregnant, then Miranda died, and then we had a miscarriage....3 years of sadness, we finally had a child to bring home and love!! PURE JOY!!!!

Then, a few hours after Zach was born, the lactation nurse came in to try to help me breast feed.

It was not working and I was rolling with the punches and not getting too worked up so she asked me how committed I was to breast feeding.

I told her that I was only going to be able to breast feed for a couple of months before I went back on my medication for my MS.  I had to go back on my meds because I would risk a flare of my MS and Zach couldn't drink my breast milk once I started my shots. Betaseron isn't good for babies.

She disapprovingly looked at me and said something about how that wasn't very committed and how I needed to reconsider my dedication to our son, and then she launched into a whole angry-faced speech about why I needed to better for our son and how good moms do x,y, and z.

She made me feel completely horrible!

I don't often shrink away, but I did at that moment.  I was too crushed and I had no fight to respond with, I was hurt. I held my son closer and averted my eyes from her judgmental stare.

And Brian doesn't get mad very often,

but he did that day.

She left, I had tears, and Brian went down the hallway after her.

I can only imagine how that convo went!! :)

The supervisor came in later and apologized for her.  She never returned, which was wise!

We had so many visitors in to meet Zach and share in our happiness!  It was honestly the best feeling in the world and it was so much fun to share it with all of our friends.  Brian called our families and told them Zach had arrived.

When we came home, our entire yard and house was decorated by our amazing neighbors! It was priceless!! I cannot describe how much our friends are our family...but they truly are just that!

I just can't believe Zach is 10 today.  I know. Every parent says that, but it's TRUE!

When I tucked him in bed last night, I told him to enjoy his last night of single digit sleep because tomorrow, he enters the double digit world and will be there for a really long time...triple digits are next!! :)  He thought about that for a long time and was REALLY excited about this double digit thing.

I just cringe thinking about double digits that end with the word "teen".....oh boy!! "Drive-teen", "Date-teen", "First Kiss teen" "Graduate teen"....ughhhhhhhh!!!

I need a drink!!!

10??  How in the world did the time fly so fast!?

And what an amazing 10 years it has been.

Zach is joyful and kind and just a good kid. I feel VERY blessed to  be his mom. He makes me smile every day and his Zachisms leave me in fits of laughter, although I try for that laughter to be with my "inside voice".

I think he's amazing!!

And I'm a very proud momma!!

Happy Birthday Zacharoonie!!!!

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!!!