Friday, July 25, 2014

Why...

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?

Seriously!

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...

e-freaking-mediately.

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...

e-freaking-mediately.

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!"

Sigh....

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.)

Boom!

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...

silent.

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

'ish.

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

Zach...

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...

achieve...

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...


Handsome....


Sweet....


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, 
successfully.
Adults are at stage 3 or 4 only 20% of the time when they are diagnosed. 
So clearly that percentage rate can be improved....by  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." 
Ummm...WHAT?

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.
You HYPOCRITICAL Asshat!

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.

Seriously!


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.
PREVENT!
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.

TAKE THAT ASSHATS!
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