Monday, September 29, 2014

For Your Good...

I still remember it like it was yesterday.

I had just started chemotherapy for my breast cancer when I got a card in the mail telling me that I could have as many massages as I wanted (for free) to help me be comfortable during chemotherapy.

There was apparently research out there that said they had found that when cancer patients felt more comfortable and had a chance to relax and take care of themselves, the chemotherapy process was easier.

I stood there in disbelief as I read the letter that was sent to me about my unlimited massage offer to help me through my treatment process.

My best friend was at my house and I showed it to her. She read my facial reaction and asked, "What do you think about that?"

I had to consider how to respond.

My then five year old had just been diagnosed with a relapse of his neuroblastoma cancer.

And there was no known cure.

We were sure his fifth birthday was going to be his last.

He had started treatments when I found the lump in my breast.

I knew right away what that lump was, and to be very honest, I really didn't care about my own cancer.

My only concern was my son, who by all physician reports, was dying.

So as I read that card, I was mad.


You see, at that time, the clinic at our hospital was so crowded that the chair he sat in for chemo was my lap...

and my lap sat upon on the dirty floor because there were not enough chairs for the kids to sit on.


One time, Braden was playing as he was hooked up to his chemo and a little girl (who was also trying to play while hooked up to her chemo) tripped over his line and de-accessed him enough that the chemo was no longer going into his port, just under his skin forming a large lump.

A very dangerous thing.

My five year old was dying and couldn't even get a chair, but I was offered unlimited massages.

That was the moment that threw me into action.

It was the moment that made me decide that we needed to form a 501(c)(3) to fund research for children with cancer...

so our kids could have a chance for a future.

We did just that and this past weekend, we had our third annual Hope Gala for Braden's Hope For Childhood Cancer.  Over 800 were in attendance and we raised about  $176,000 to fund awareness and research targeted therapies to shut down the activators of childhood cancers.

And I had chills.

I went to church on Sunday night and one of the songs we sang had the words from Romans 8:28.

God makes ALL things...not the things we choose to have in our together for our good.

we certainly didn't choose this crapfest, but ALL things are working together for "our" good.

"Our" good is the good of all children with cancer.

I don't believe God gave us this crapfest...I think that came from the "other guy" but I do believe God holds our hands through every bad moment and that He wants us to use all things for something positive.

During this entire crapfest, I have experienced a lot of positivity and witnessed more acts of selflessness and compassion than I could ever list.

I been blessed by friendships and support from the most amazing people in the entire universe and many of them have joined with us to fight to bring HOPE to our children with cANCER.

And most of them are not people who have children with cancer. 

They are just people who care and act to fill a need.

This crapfest has brought more beauty and grace into my life than I could have ever imagined.

Yes, I wish it had never happened, I wish our son didn't have to go through everything he has had to endure.

But the simple truth is that I cannot change our circumstances. 

But I CAN choose who I react and I can control what I choose how I act as a result.  

So thank you cANCER...thank you for creating the crapfest that led us to...

beautiful selfless people surrounding us...

true friendships...





gratitude for every moment...

...and HOPE.

Braden just turned 10, even after battling a secondary cancer we were told he would not survive a year ago.


HOPE wins because 

ALL things work together for our good...

if we trust, believe, and have faith that no matter what the answer to our wants and needs, the answers  will work together for our good.

We have HOPE that Braden will live a long life and right now that is enough.

Actually, it is more than enough....

it's everything.

Monday, September 8, 2014

5 and 10...

When Braden relapsed with neuroblastoma, he was weeks away from his fifth birthday on August 11, 2009.

We were told that he had a less than 10% chance of survival and that there was no known cure.

The disease continued to spread, but we tried some therapies that had never been tried before and got lucky.

He went into a second remission and has remained in that remission since January 25, 2011.

FIVE years ago!

He had less than a 10% chance of being alive in 5 years.


As Braden would say, "Boom Baby!"

The time between August 11, 2009 and January 25, 2011 was very rocky and we were told more times than I can count that he was not going to survive and we needed to spend our time wisely and enjoy every day with our son.

We continued to fight...and more importantly, so did Braden.

It was a big gamble. We knew that the therapies we were trying could shorten his life even more...

our hope was that it would bring him more time.

Nothing is more difficult than making life/death decisions for your child.

And there is no right answer.

There is only an answer...

and faith...

and HOPE!

My heart has shattered into a million pieces a million times. It has been held together with duct tape and bailing twine for many years....since our daughter Miranda died on August 1, 2001...

Some days it feels like my heart has simply hardened into a rock because it's easier to shut out feelings than it is to feel the pain of them.

I'm a different person today than I was 13 years ago. And that is not all for the best.

Every time I think that I can't keep doing this, that I'm too tired to keep fighting, I think about all of my friends who have buried their children, and in their empty arms and broken hearts, I find my reason to continue.

Being able to continue to fight every day, no matter how hard it is, is a blessing!!

Their loss inspires my fight. Braden's fight and courage and relentless HOPE and positivity give me energy and reason...

and for that, I am grateful, blessed, and changed in a positive way.

When Braden turned 5, I believed it was the last birthday he would see.

Then he turned 6...7....8....

and at 8, it became a crapfest again as just weeks before his 9th birthday, he was diagnosed with a secondary cancer that was CAUSED by the treatments he had to save his life.

That is messed up.


The things that saved his life were now going to be the very things that would end it.

We were told that he only had a few weeks to a couple of months to live....

and we needed to spend our time wisely and enjoy the time we had with our son.

Same message as we had heard multiple times before.

But this time, the doctors told us they had NEVER seen a child with his initial diagnosis and his secondary diagnosis survive.

We tried some things that had been done with other children before hoping to buy some time...

to delay the end.

And then came the hope again.

His cancer responded to the treatment...and our teams began to think he could try for a cure with a bone marrow transplant.

So we all were tested and his 10 year old brother, Zach, proved to be a perfect match as a bone marrow donor. So he went through transplant and received his brother's bone marrow cells to try to save his life.

And a year after his secondary cancer diagnosis, he is celebrating his 10th birthday.

cANCER free!

It's early in the post transplant process as it's only been about 4.5 months with the new cells. It's all still a crapfest and up in the air. He stands a 50% chance of relapsing with the secondary cancer (a leukemia),

and because we've replaced his immune system with his brother's any immunity his own cells had developed against neuroblastoma is gone so he stands a high probability of relapse of his neuroblastoma as well.


he is turning ten...

double digits.


He's kicking it's backside.

All thanks to the courage and fight of a tiger...

the love of an army...

the protection from a God who is bigger than cANCER...

and HOPE.

We weren't supposed to get this day,

but it's here and we are grateful beyond explanation.

5 years post relapsed neuroblastoma diagnosis...

10th birthday.

Hey lose!


Sunday, August 24, 2014

What Not To Do On Vacation...

It's really all my fault.

We were on vacation, driving home from Philly to Kansas City after our 9 year old son's cancer scans.

Zach, our 11 year old, is a huge history buff. I find him reading historical fiction in his room at all hours of the night. We decided that because of his interest in history and the military, we would make a few stops on the way home that would interest him.

One of our stops was at Gettysburg.

Something that was on his list of "Top Things To Do In My Lifetime" and he was beyond giddy.

We went past the gift store and Zach asked if we could go inside. I knew there was absolutely no way we were walking out of there without something. So we went inside...

I told you this was all my fault...and that was the first mistake I made that day.

Once inside, he didn't hesitate one second. He made a mad dash for the small stock of toy musket rifles in the center of the store.  Zach is a huge Nerf gun guy and he and his friends fervently defend the world (our yard) from invading forces.

So I wasn't surprised when he immediately said, "Mom...can I get this musket rifle?"

I was tired after the stress of scans, but I still had enough energy to say no because it was too big to haul around in the rental car and he didn't need another toy gun.

So, without skipping a beat, he said, "well then can I get the musket's smaller?"

and then he grinned that grin.

Moms know the one I'm talking about, it's the one that softens your heart when you are being strong. At that moment, I knew I was weakening in my resolve.

I wanted to say no, but I was tired of always having to be the one to say no so I did a very bad thing...

I sighed and said,

"Ask your father."

It was a safe answer.

I knew Brian would say no. It was more than $10, it was big, and he has a hundred Nerf guns and he didn't need another toy gun. It was an illogical thing to buy and Brian is an engineer...driven by logic.

I recognize it was wrong to pass the task of saying no along to dad so he could be the bad guy, but I am a stay at home mom and I say no four million times a day. I was on vacation for Pete's Sake! I wanted a break from begin the bad guy....

and I just couldn't bring myself to say no to something that I knew was going to make that smile disappear.

To make it worse, after I told him to ask his dad...

I scurried outside the gift shop with our nine year old (like the chicken I was) so I wouldn't even have to see his face when his dream was crushed with the "no" answer that was coming.

Outside the store and I braced for the sad face that was going to be coming out at any moment. My stomach was churning because even though I knew it was the right decision, I was bummed for him.

But I did not see a sad face when he walked out the door.

He came out BEAMING while wearing a civil war blue soldier hat and carrying his new rifle musket over his shoulder.

My jaw dropped.

What had happened? How had my master plan gone so terribly wrong?

My husband smiled.

I said, "You let him get it??"

His shrugged his shoulders and said "well" a lot.

Lesson one...don't leave the bad work to your spouse because chances are "the grin" is going to melt him too and he is going to cave as well. Chances are he is just as weak as you are...


Zach was so happy about his musket. So happy that he could not stop smiling. He cocked and fired it about a thousand times...

before we even got in the car.

And then once in the car, he cocked and fired it another thousand times.

Then once we backed out of the parking space, he cocked and fired in another thousand times...

and so it continued.

For hours.

When we would mention how that constant clicking was "distracting to the driver", he promised he would just hold and not cock it or fire it. That didn't turn out to be the case. And neither of us had the heart to take it away because he was so happy.

I admit that it is possible that I smiled and mentioned that I was not the one who said yes as the clicking continued.

Our next stop was outside DC at the National FireArms Museum. Incidentally, this is inside the NRA headquarters.

Oh goodie!

I'm not a big "gun" girl.

Remember Zach's love of the military and all things historical?  Well this location made him want to faint from excitement.

His face was sort of like mine was when I saw the Ghirardelli Chocolate Factory for the first time in San Diego.

I had arrived "home"!

Braden and I grew tired of looking at what appeared to me to be the same gun in a thousand cases. Zach informed me that this was not the case as he explained every single fact and figure about every single gun he saw while excitedly gasping and dropping his jaw at each and every one.

So Braden and I went outside and sat under some trees, played, and waited....

for them to get out of the gift shop.


you would think that the thousands and thousands and thousands and thousands of clicking and banging noises in the seat directly behind Brian as he drove would be incentive to say no this time,


So I wouldn't even need to mention that we didn't need a second toy rifle.

You would be wrong.

He came out with some rifle thing that had a pump that allowed him to jerk it in the air and cock it like Arnold in The Terminator.


So now we had TWO guns continuously being cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired...

(reading that over and over isn't nearly as annoying as hearing them cock and fire over and over and over, trust me)

But he was so very happy!

The next morning when we got in the car to head out for the day, the guns were "mistakenly" left in the back where he couldn't reach them while we drove.

Craziest thing!! How in the world did THAT happen!?

Lesson NOT...I repeat NOT allow your child to purchase a toy musket or rifle thingie...

and then retain it in the vehicle while driving.

I can still hear the clicking in my head....

and it's been like two weeks.

But I can also get to see him smiling from ear to ear.

Maybe, in retrospect, it all worked out.

Maybe ;)

Friday, July 25, 2014


There are a lot of things in life that make me wonder "why". You know, really big life questions that need answers and solutions.

Things like: Why do rabbits only eat the flowers and plants in my landscape beds and not the weeds?

I would totally welcome those little "wascals" if they would just eat the weeds rather than destroying what is left of my expensive plants.

Most of my "why" questions center around my children and this parenting gig. My boys leave me with several questions that cause me to scratch my head in wonder.

Here are a few:

Why Do They ALWAYS Begin Causing Trouble The Second I Answer The Phone?


They can be doing whatever they are doing independently and beautifully for hours but the minute the phone rings it's like a Pavlovian bell throwing them to active duty.

Suddenly, they both need something or have to tell me something...


I've even left the room and escaped into the garage to take a call so I could hear the person on the other end.

I was, of course, locked out by my nine year old who has autism because once a door closes has a tremendous need to lock it...


Bonus Parent-Trap Tip, it's not that easy to get two giggling boys to let you back into your house when you are knocking and asking them to open the door...right now! Keep a spare key handy in the garage.

Why Do They Not Care About A Particular Toy For Months Until They See Their Sibling Touching It...

And then suddenly it becomes priceless and their favorite toy ever and "he can have anything else I own but not THAT mom. I love THAT!"


and mom eye rolls.

Why Do They Not Hear You When You Ask Them To Help You With A Chore...

BUT...they can be sound asleep upstairs as you sneak into the freezer and get out the good ice cream you have been hiding WAY in the back and when you start to scoop it into a bowl...

they suddenly appear in the kitchen and ask to have some ice cream.

(Not that this has ever happened to me)

Why Do They Wake Up At 5:30 AM....

on the only day you can sleep in.

And as an added bonus they make so much noise "being quiet and waiting patiently for you to wake up just like you told me to do mom" that they wake you up and you can't get back to sleep.

But, on days when they have to be up, you literally have to roll them out of their beds...

while they whine and complain about how much noise you are making trying to wake them up so early because they are soooo tired. "Puhlease mom...just five more minutes!!"

Why Do They Have To Have Funny Retorts To Questions When You Are Mad?

This happens most often to me when I am talking to myself using my "out loud" voice rather than my "inside my head" voice as steam is billowing out of my ears after my boys have done something bad.

Usually, it's when they are sitting quietly to "reflect upon their behavior". (That's the  9 and 11 year old version of time out because apparently time out is for babies, so I just renamed it.)


Here's a recent example...

"Why in the world would anyone ever think it was a good idea to spray sunscreen all over the side of the car?  What could you possibly be thinking the positive result of that action would be?"

The answer from the non-involved sibling witness, while giggling, was...

"You gotta admit mom, it is really pretty funny if you think about it for a minute!"

It's hard to make an effective case for not doing something again, ever, when you are laughing so hard you have tears.

AND....Why Are They So Darn Adorable When They Sleep?

Nothing is cuter than watching them all curled up, sleeping...

without talking...

or spraying sunscreen on cars...

or fighting over a toy.

When they are just quiet and sweet and...


I'm pretty sure those moments are the ones that keep me sane...


Even with all the "whys", I wouldn't trade this mom gig for anything in the world.

I just keep the wine handy!

Sunday, June 29, 2014


The day our son Zach was born was...well a huge celebration.

Obviously.  Sure, parents celebrate the birth of their children but for us, it was extra special.

Before Zach was born, we had a daughter, Miranda Grace, who died in my arms 15 hours after she was born due to underdeveloped lungs after a complicated pregnancy and bed rest for 2.5 months.

We tried again to have a child and had a miscarriage.

So we picked ourselves up and tried another time. On April 3, 2004, Zachary Dean Hofen entered the world...began crying...

and he hasn't stopped making noise since. :)

We were so very happy. Life was good.

Like most parents, we wondered what Zach would become...


and dream of.

What would his dreams lead him to become...

Would he be ornery....

And if so, would we be able to catch him at it....


Maybe he would be a water boy....

Or a pilot....

Or perhaps he would be a famous jet ski dude...

Professional fall leaf taster?...

Santa's co-pilot?...

We had no idea but the one thing we knew was whatever Zach chose to be, we would always be there, holding his hands, and encouraging him every step.

But the one role he never saw coming, was the role of big brother.

This new little guy certainly rocked his world...what was with this new "sharing my parents" thing? 

What happened to "all eyes on me because I'm so cute" way of life?

And what was with all the crying, stinky diapers, and noise at all hours of the day?

This brother thing seemed a little "sketchy" but Zach earned the title of "Best Big Brother" quickly.

And then his baby brother, Braden, got cancer. 

And Zach became a very grown up 4 year old overnight. His family was split into two locations, mom and Braden lived at the hospital and dad and Zach lived at home....

for over a year. 

Zach visited the hospital and we played. But it wasn't the same as living together.

Everyone's world changed overnight with that diagnosis. And Braden has been fighting cancer continuously for 6.5 years

And mom got cancer too so both his mom and brother fought cancer together.

Zach's live changed once again...and he became more and more aware that life isn't a guarantee.

He had to learn lessons of life and death, fear and uncertainty, and brutal realities no one should have to deal with before the age of 7.

He also learned how awesome people are and how kind they can be in your darkest hour.

He learned about God and His grace and mercy.

And he learned about courage, fight, and HOPE!

Zach continued to grow older while continuing to have a heart of kindness and love.

And he became a Chef...

A candle blower-outer...

A giver of smiles...

A patient brother...

An explorer...

A comedian...



An artist...

A friend...

A military hopeful...

A wrestler...

A drummer and trombone player...

A great snowball target...

And three months ago, at the age of 10, he became a bone marrow donor.    

To try to save his little brother's life.

There was no other match in the entire world. Zach was the only one...and he was a perfect match.
Without Zach's bone marrow donation, Braden would have died in a very short time.

So Zach went through surgery to have his bone marrow extracted and then transfused into his brother.

Knowing full well that his cells could save Braden's life...

....or they might not.

That's a lot for a ten year old to carry on his shoulders.

After his cells were blessed by the Pastor in the room, Zach said, "Mom, this wasn't much fun but I would do it again."

And as the nurse transfused Zach's cells into Braden's body, the tubing miraculously formed the shape of a heart...

Zach didn't just donate his bone marrow.

He donated his love...

and brotherly HOPE.

Zach is a pretty amazing boy and I am blessed to be his mom.

I thank God for this little boy every single day.

And I learn from him....every single day.

I learn what LOVE really means.

I learn what HOPE really means.

And I learn that DREAMS take many different forms. 

It's not just about what title you will be called...what caption will be on your pictures.

It's about what caption your heart wields. 

What your heart shows the world about how to live life by putting other's before yourself....about taking risks to try to save others.

Zach is eleven now. 

I wonder how many more powerful lesson this young man has to teach me in the next 11.

I can't wait to find out.

We love you Zach!

Wednesday, June 11, 2014

Integrity and Asshats...

I just read an article today written by a Oncologist named Charles Hemenway from Loyola University.

The article was written as a response to the movie "The Fault In Our Stars", a work of fiction. I'll put the link at the bottom of the blog so you can read it yourself and form your own opinion. Apparently, the article author asked him his opinion about the movie and it's "authenticity" as far as how it related to the portrayal of childhood cancers.

Let me say that I have not read the book, nor have I seen the movie. I won't comment on that part of his article because I am not informed. 

I am, however, informed about childhood cancers because our nine year old son has been fighting two different types of childhood cancer for 6.5 years. His first cancer, neuroblastoma, came with 30% odds of survival for 5 years. It relapsed and he received less than 10% chance of a five year survival.

That was 3.5 years ago.

He was defying the overwhelming odds and surviving his cancer, when he developed a secondary cancer that was CAUSED by the treatments he received to save his life from neuroblastoma. Our teams in two different cities and states have never seen  child survive this particular secondary cancer, a form of leukemia, with neuroblastoma as the initial diagnosis.

Our family has actively and continually lived with a son who has battled childhood cancer for 6.5 years. 

I get it.

I understand how pitiful my son's odds are and I understand how many funerals of his friends we have been to. I understand that 46 children are diagnosed every school day and 7 earn their angel wings every single day, year after year after year...

I understand that over the past 10 years, childhood cancer research has lost over 30 million dollars in funding for treatment research to help them.

I read his article and I was furious.  

Like Charlie Daniels and "fire flying from my fingertips" kind of furious!

It reminded me of an article that a man named Andrew Becker, the Media Relations Director for the American Cancer Society wrote a few years ago in response to a group trying to get a bald Barbie made so their children had something to relate to as they went through chemotherapy. 

Yes, The American Cancer Society, who is supposed to be fighting to help people who have cancer. And some of those people are children. 

Becker's article was scathing and extremely disrespectful/demeaning to children with cancer.  I was shocked anyone would say the things he said. In summary, he said we didn't need any more awareness for childhood cancer there was already too much awareness and too many silicon bracelets. He continued by explaining that because childhood cancer was "exceedingly rare" it didn't need much research as our kids could just "incidentally benefit" from research done for cures of adult cancers.

Never mind scientists have proven that childhood cancers are biologically different than their adult counterparts at a cellular level so their cancers will not respond the same way adult cancers do to their drugs.  

To hell with the kids. 

He also believed that bald Barbies might make all children think they were going to get cancer and to make that point, he said, "It’s why we don’t see advocates calling for lightning strike dolls.”

Nice. (that was sarcasm)
A man who is the media relations director for a major fundraiser for research marginalized, demeaned, and irreverently made light of children fighting for their lives, while also taking a swipe at those injured or killed by lightning.
The SNL Church Lady skit comes to mind, 
"Well that isn't that special".
What an asshat! 
He is supposed to be fighting for cures for our children. MANY childhood cancer families raise funds at Relays For Life around the country and don't realize that 2/3 of a PENNY (that's right I said not even a full PENNY) of every dollar raised by ACS goes to fund research for their children!  So, if I raised $100,000 for ACS, only $750 would go to help find cures for children.
In my humble opinion, that kind of funding (more accurately the lack of funding) does not entitle that asshat to an opinion, let alone a chance to make light of children with cancer who are fighting for their lives. 
ACS completely stood behind Becker and defended his statements so it clearly is representative of their organizational beliefs. 
Awesome! (that was more sarcasm)
Obviously, I am not an ACS supporter any longer. But I do thank Asshat Becker for educating families of children with cancer regarding their opinion about children with cancer and their lack of funding for them.
(By the way, if the word asshat offends you, you probably want to stop reading now because I'm gonna be using it a lot more as I'm about to go back to write about Asshat #2, Dr. Hemenway, an even bigger Asshat, if that's possible).
I shouldn't have been shocked that a pediatric oncologist would make very (almost eerily similar) statements about children with cancer while being kind enough to even mention ACS in his quotes. 
Wait, that's not true...I was justifiably shocked, 
and appalled.
In the worst way because Asshat #2 is a physician who is charged with saving the lives of children fighting cancer.  

He has had to look into the eyes of children fighting cancer. 
He has watched children die!
He has seen first hand what these diseases do to children and yet, he too, made light of their battle just to prove the point that a movie was a work of fiction. 
Nice! (again...sarcasm)
I've been told by childhood cancer families and patients that the movie and book really are fairly accurate. 
However, I'll make the point for the last time, it is a fictional work. It is not a documentary. I would challenge anyone to look at any fictional movie or television show based on science in which everything is 100% accurate. Watch Grey's Anatomy....or any CSI...or Law and Order...
His article makes light of childhood cancers and he says that childhood cancers are 70% survivable. True, the overall rate is 70% but that is an average but many childhood cancers are about 30% survivable.
And even at 70% overall survivability...
30% of our children are not expendable.

30% of our children should not be deprived of futures because diagnoses are missed 80% of the time until children are already at stage 3 or 4 in their disease progression. That makes it much more difficult to treat, 
Adults are at stage 3 or 4 only 20% of the time when they are diagnosed. 
So clearly that percentage rate can be  A LOT...
...if we care to change it! 
You Asshat!
I understand that Hemenway is saying the movie was given a dose of "Hollywood" and some things were less believable, I don't doubt that...but that's the nature of Hollywood and fictional works.
Asshat #2 chose to use this interview as a platform to tell people how childhood cancer really is survivable 70% of the time and is not as big of a problem as was portrayed.
He chose to say (and I am quoting directly from the article) "I think the important thing to realize is that cancer in children is highly treatable and ultimately curable. Yes, we see sad outcomes in which children die, but this book tends to focus only on one side of it that's not all that accurate. If you want to look at the big picture, outcomes are usually good," he said. "It's true that there are many sad stories in pediatric oncology but I think it's perhaps not appropriate to focus exclusively on that." 

You ridiculous "looking to bash movie/book so you take literary licensure with the science to make your point seem to be completey accurate while making things in the childhood cancer world seem far better than they are in reality" authoritative, inaccurate voice representing all oncologists.

Hemenway had a chance to call attention to the need for research to save the 7 children who earn their angel wings every single day, the 46 who are diagnosed every school day, but instead he chose to pretend things are pretty good to find fault with a work of fiction.
Things in the childhood cancer world are FAR from fine.
My "favorite" (yes, more sarcasm but you probably gleaned that by yourself having read this far) thing he said was that children can tolerate higher doses of chemotherapy because they are essentially tougher than adults and deal with the crapfest of chemo more positively.
I don't disagree, for some adults. There are some adults that get up and fight like a kid. I know because I am one of those adults. I am a breast cancer survivor and there was no time to be sick because our son was getting 5 times more chemo on the same day I was and he wanted to go to the park and play.
So I went with him and fought like a kid.

Our kids are freaking ROCK STARS!

However, the problem with Asshat #2's statement is that when we throw that much chemo at kids, it has lasting long term effects. Two-thirds of the kids who DO survive have long term, chronic health effects.
Our son has a thyroid disorder, kidneys that are not functioning well, a liver that is compromised, and various other things.
2-3% of those children who survive develop a secondary cancer that is CAUSED by the treatments they had to save their lives the first time.
Our son, Braden, is one of the 2-3%. 
And now the medical world believes he won't survive it.
What did we treat it with? What was our one and only chance to try to prolong and perhaps save his life??
More high dose chemo.


It came in the form of a bone marrow transplant in which he received bone marrow from his eleven year old brother who was a perfect match.
Guess what Asshat...high dose chemo is not safe and it's not working (see previous comments about the too many childhood cancers have horrific odds for survival after doing high dose chemo as well as the latent destructive chronic effects of said chemo).
We desperately need targeted therapies that attack cancer cells and leave healthy cells alone so children don't have those side effects of chemo, side effects that could kill them. Therapies that are directed to shut down the activators of childhood cancers and stop them before they begin. Awareness so diagnoses are made at earlier and more treatable stages. Therapies and drugs that are directed to the unique biochemical pathologies that are unique to THEIR types of cancer. 
(And here's a bonus for both of the Asshats need to be educated about...)
IF we do just that, researchers believe we could potential PREVENT adult cancers.
Those are dollars that are much more wisely spent. Smokey Bear said it best, "prevent the forest fire" don't chase it down after it's already raging.

That is not an "incidental benefit" like they tout for childhood cancers as a result of adult cancer research; it's a "direct benefit" to adults from childhood cancer research.

BOOM Asshats!
I am shocked, disappointed, and furious that both of these men chose to turn their backs on the very people they are supposed to fight for as their career paths dictate.
That is why they earn the titles "Asshat #1" and "Asshat #2" on my "Grand Poobah Asshats of All Time" list.
Congratulations Asshats.
You win.
Unfortunately, our kids are losing...
because of "people" like you.
BOTH of these men should have known better!
Please read and form your own opinion. People don't have to agree with me, this is just my editorial. 
I am a mom of a child who is supposed to die. I don't deny being biased, but I do believe my opinion is fair, is honest, and has integrity...
...which is something these Asshats don't possess when it comes to children with cancer.
I believe this beautiful face is worth fighting for and I'm sad and angry that people charged with leading the fight have failed him and his friends.

Since I hit the publish button on this blog, the link that I provided to the story was apparently disabled and would not allow you to see the article so you could read for yourself. The link appears to be working now,but I have copied and pasted it for you below so you can also see his side of the story in the event the link has future difficulty. I think it's important that you are allowed to read his words and form your own opinion.

New movie portrays teen cancer unrealistically, expert says

  • May 23, 2014
A new movie, “The Fault in Our Stars” paints an unrealistic image of young patients with cancer, according to pediatric oncologist at the Loyola University Medical Center, Charles Hemenway, MD, PhD.
The movie, scheduled to hit theaters on June 6, is based on a teen book by John Green. The story is about two teens who fall in love; Augustus, who has osteosarcoma, and Hazel, who has thyroid cancer that has metastasized to her lungs.
Charles Hemenway, MD
Charles Hemenway
Hemenway said outcomes for most pediatric cancers are much better than the movie portrays, and the types of cancer the teens experience are very rare.
“For the most part these are things that we don’t typically encounter. It’s a dramatic fictional piece of work, so that’s fine — poetic license is up to the author, but it deviates from what we typically encounter,” Hemenway told HemOnc Today.
He went on to express concern that the story will send a frightening message to children, teens and their parents.
“I think the important thing to realize is that cancer in children is highly treatable and ultimately curable. Yes, we see sad outcomes in which children die, but this book tends to focus only on one side of it that’s not all that accurate. If you want to look at the big picture, outcomes are usually good,” he said. “It’s true that there are many sad stories in pediatric oncology but I think it’s perhaps not appropriate to focus exclusively on that.”
According to the American Cancer Society, roughly 2% of thyroid cancer cases occur in children and teens. Hemenway told HemOnc Today that it is largely treatable, even if it metastasizes, with long-term survival at about 95%. In a press release, Hemenway said osteosarcoma makes up about 5% of all pediatric cancers, and the long-term survival is about 65% to 70%. In the movie, Augustus undergoes an amputation and is thought to be cancer-free. Later, his cancer returns and spreads everywhere. Hemenway said osteosarcoma usually only spreads to the lungs if it returns, and that amputation is not always necessary.
Augustus and Hazel attend a support group in the story and meet another teenager named Isaac, who lost one eye to cancer and is going to have the second one removed. Hemenway said this is very unrealistic because the most common type of pediatric cancer is retinoblastoma. It typically occurs in babies and toddlers but only rarely in teens, he said. Further, he said it is possible to lose one eye to retinoblastoma, but the other eye would be monitored closely by physicians and any recurrence would be easily treated.
“For the three of them to all be in the same place with such rare forms of cancer is like lighting hitting three times. Fortunately, most pediatric cancer patients experience better outcomes,” Hemenway said.
The overall cure rate of pediatric cancer is about 70%, and Hemenway said pediatric cancers are “biologically different from adult cancers.” He added that children can usually tolerate higher doses of chemotherapy than adults can withstand.
In his experience, children are much more emotionally resilient than the movie portrays, he said. “My experience is that when kids are confronted with serious illnesses like this, they rise to the occasion and put the ‘Why me?’ behind them and get on with getting better.”
Resources for people who have questions and concerns about pediatric and teen cancer are available. Hemenway said the Children’s Oncology Groupwebsite and the NIH website section on childhood and adolescent cancer are good resources. – by Shirley Pulawski