It’s been a while…..

It’s been a while….

Haven’t really been able to put thoughts into words. At least ones that I can type and express.

It’s been two years. (Yes, little over)

Not a day goes by when I don’t ache to see you. Hear you. Long for that sweet giggle. Or the daily argument with your sister.

It almost feels like I live in a parallel universe. The one with you in it. And now the one without. And the two blend, and overlap.

But the thing is…..Life feels suspended. Yes, we do our everyday routines. Work. Sleep. Repeat.

But there is always that hole. That missing puzzle piece.

And it’s irritating.

And lonely.

How do you live with a piece of your heart gone?

In a forever haze I guess.

Jason and I, we think of all the things we want to do and see….things that you would have enjoyed. And we go. And try to experience as much as possible–because we don’t know when our last day on this earth will be. No one does.

Back in the fall 2016, we went to San Francisco as a “less than whole” family. We put the Z stickers on every thing we could. “Leave her mark” on the things she would have loved to have experienced. We have continued this over the last 2 years. This week, I had someone I barely know, comment to me that she “found” a Zayla sticker when they were on vacation.

It caught my breath. And just for that moment, I knew. She is with us. All the time. And she is loving the stickers being placed all over, with her in mind.

Currently we have quite a few stickers, but I was thinking of ordering more. If any one would like some for their next adventure to show Z, let me know. Donation of $1 per sticker would be appreciated.

Tonight, I get to speak about childhood cancer research at a benefit for the Team Make a Difference fundraiser. TMAD is a non profit that does room makeovers for those battling various diseases/illnesses. What better way to heal, then in your own sanctuary? Preparing my speech has made me think about what I need to share.

Last time I looked at the American Cancer Society’s 990 Tax Forms was back in 2014. Well, unfortunately not much has changed. It’s shocking to me that anyone would want to donate money to this organization. The numbers are ridiculous. Cancer IS BIG BUSINESS. And that makes me sad. I see at least one patient every week being newly diagnosed with cancer. That is insanity. When will people wake up and stop donating money to organizations that are not fiscally responsible???

Not sure how much my blogging makes a difference, but I must share. Here it goes:

AMERICAN CANCER SOCIETY 2016 990 TAX FORMS

Revenue (your donations) $813,199,479

EXPENSES

Salaries. $455,280,085.55.9%

Fund raising fees. $170,957,35121%

Research grants $102, 873,77912.6%

Patient support, and

prevention programs $ 82,946,34710.4%

And once again, the Organization’s Mission statement on their tax form states: To save lives, celebrate lives, and lead the fight for a world without cancer.

When over half of your revenue goes to salaries? Sounds like BIG business to me. Wake up America! Stop funding the wealthiest “non profit” in the world.

And this is why we do NOT Relay for Life. Don’t ask us to. EVER.

Want more information? Check out this link: http://naturalsociety.com/cancer-drugs-cost-american-cancer-society-exposed-67380/

Here are some great organizations that DO fiscally raise money for research. IF research is your goal.

Alex’s Lemonade Stand Foundation

St Jude Children’s Research Hospital

Pancreatic Cancer Action Network

Colorectal Cancer Alliance

Breast cancer research foundation

Lynn Sage Cancer Research Foundation

Obviously there are more organizations, but these are the ones that STAND out, and do a very good job supporting research without spending TONS of money on salaries and advertising.

Enjoy your day…….

#missyoubabygirl

Grieving mother….

Grieving mother….is NOT happy.  And not for the obvious reasons either.

It was brought to my attention that a local high school is donating ALL the proceeds from their childhood cancer night to….you guessed it….Relay for Life or better known as American Cancer Society.  ARE YOU FREAKING KIDDING ME?????????

I decided to put my words to action…..and sent this email to the Principal and Assistant Principal at Bishop McNamara.  And here’s the thing….it shouldn’t be a “it’s affecting one community more” kinda thing…..childhood cancer CAN and WILL strike again. Incidence rates of diagnoses is rising every year. There are numerous children in OUR entire Kankakee area that are, or have battled childhood cancer. Schools should be supporting CHILDREN!! For god’s sake, that should be the priority. Period.img_2237 

Mr. Kennedy and Mr. Granger,

It was brought to my attention that Bishop McNamara High School is having an event Friday night that is themed, Go Gold for Childhood Cancer. Go Gold for childhood cancer was MY idea last year at Herscher.  I think it is great that Bishop McNamara High School is wanting to support childhood cancer.  Until I heard who the event is going to benefit.  

 I would like to share a blog excerpt that I wrote this past June.  I did the Go Gold to raise awareness and money for childhood cancer research and families.  Because I WAS a childhood cancer family.  Until MY family was destroyed in March when my daughter DIED from brain cancer. 

Please do the right thing.  Please don’t dishearten Bobbi’s efforts to make this world right from losing her best friend.  Relay for Life does NOT support children with cancer.  They barely support adults with their pitiful donations to research.  Don’t believe me?  You are more than welcome to look up the IRS form 990 on ACS.  I have.  Below is that information.  You are wrong when you tell a student that Relay for Life and American Cancer Society give 79% to research.  That is a lie.  Look it up.  Facts are that it is 13.2%.  Far cry from 79%.  Please do share which site you are getting your misguided information from?? Directly from American Cancer Society?  How about searching charitynavigator or other charity whistle blower sites??

I will be sharing this conversation on my blog and website. Please do the right thing.  Reconsider using the horrific faces of childhood cancer, then giving the donations to organizations that do NOTHING for the kids you are trying to support.  It is a slap in the face of the children who are battling.  And it is a slap in the face to the families that have lost their loved ones to this horrific disease.

*****background note****** Zayla’s friend Bobbi (who attends Bishop Mac) went to the Assistant Principal today to talk to him about where the money is going.   He gave her a website where he gets his charitable “facts” and “statistics”. She mentioned all the research  (Zayla’s mom) has done and he gave his “opinion” on why some of us may not like RFL. Bobbi got upset when talking to him, she wears that heart on her sleeve. “This week’s football game is for Childhood Cancer Awareness and the proceeds are going to RFL of Kankakee”.

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From my blog:  www.teamzayla.org  June 2016

Another year….my baby should have been 15 this week.  Instead, she will be forever 14 years old.

Don’t get me wrong, I am so grateful that we had 14+ years with this amazing human.  But it just wasn’t enough.  And so unbelievably unfair that you were taken too soon.

Another year…..of watching the Relay for Life event unfold in our local town.  I am grateful this year that I am working today……  I don’t have to travel past this event and feel the extra hurt of knowing that people are still oblivious.

However.

Today while sitting at work, I received a text from a friend….asking where to locate the ACS information.  And that text pushed me to finish writing this blog that I actually started researching and writing earlier this week.  It’s just so hard to keep pushing forward….raising awareness…..when all I want is MY daughter BACK!!

And that can’t happen.

So maybe, instead of feeling sorry and dismal, maybe, just maybe, I need to share this……American Cancer Society, and Relay for Life are a SCAM!  And I am not just pissed off about this because they don’t do squat for kids…..I am pissed off because there are SO, SO, SO many organizations that would do MORE with donations for ALL cancers. I know there are a ton of intelligent people that can do the research like I have.  I know there are many many people that can do simple math, like I have.

Is it just laziness? Is it propaganda?? Or is it that American Cancer Society has been shoved down our throats for years….that they are helping people have more birthdays….that they are reaching for that cure to cancer……that they are “there” for Americans.  I call bull.

So here is the breakdown folks….

ACS received $847,861,530 in donations in 2014 (latest IRS form 990 information). Of which, $441,686,016 was used for salaries.  That is 52% of all donations go towards salaries.  Salaries like that of CEO John Seffrin who was paid $1,287,247, and COO Gregory Bontrager made $1,120,038, EVP David Veneziano received $1,110,883 and Sr EVP Joseph Cahoon Jr made $1,008,931 in 2014.

Another sick thought…..$17,144,816 was paid to lobbyists.  We all just love lobbyists, now don’t we??!?! Whereas $19,112,920 was paid for grants and assistance to Americans in need for programs like: Look good Feel Better program, Wigs for women, Transportation, guest room programs and other patient support systems….Can you see that just 2 million dollars more is paid to actual patients suffering from cancer versus companies that lobby our governments congressmen and women?!?! Seriously??!? Don’t you think that cancer patients deserve more?  I mean let’s get real here…..all those cancer patients and their families are raising money for ACS.

That brings me to fundraising expenses…..$201,303,109 was spent to raise more money. That is 23.7% of money raised goes into raising more money.  Huh, you say??? For every $100 you raise at the Relay for Life event…..$23 goes to raise more money.  Sounds like a great investment, doesn’t it???

My final, and honestly the most important part…..RESEARCH! According to the 990 IRS form Mission Statement for the American Cancer Society is this: To eliminate cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from the disease through research, education, advocacy and service.  Research you say?? What a joke!! $112,688,736 was spent on research grants in 2014.  That is a measly 13.2% of raised funds….OR $13.20 for every $100 raised.  I find this insulting.  Absurd.  And an absolute need for CHANGE!!  Don’t keep feeding into the Big Business of Cancer….

Image result for friends don’t let friends relay image Seriously??!?! A world without cancer will NOT be due to ACS.  Sorry folks…..Relay for life does not support Research….

I did see that the revenue received by ACS from 2013 to 2014 did decrease by $71,668,244.  Maybe, just maybe America is waking up……

I would like to add…..A GIANT thank you to my daughter’s school (and Mrs Jensen) for changing our school’s mini relay for life event at the school…..Now a majority of raised funds (by the district teachers, students and families) goes to more fiscally responsible cancer organizations…..

baby steps…..must keep pushing forward…..my baby girl has got to be smiling down from heaven about that!!!

To ALL cancer survivors and their families…..You don’t need to walk the lap as a survivor at the Relay for Life event to feel accomplished….YOU already are!!

Peace~

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“Purpose of Life is to Live with Purpose”

Another year….

Another year….my baby should have been 15 this week.  Instead, she will be forever 14 years old.

Don’t get me wrong, I am so grateful that we had 14+ years with this amazing human.  But it just wasn’t enough.  And so unbelievably unfair that you were taken too soon.IMG_6937

Another year…..of watching the Relay for Life event unfold in our local town.  I am grateful this year that I am working today……  I don’t have to travel past this event and feel the extra hurt of knowing that people are still oblivious.

However.

Today while sitting at work, I received a text from a friend….asking where to locate the ACS information.  And that text pushed me to finish writing this blog that I actually started researching and writing earlier this week.  It’s just so hard to keep pushing forward….raising awareness…..when all I want is MY daughter BACK!!

And that can’t happen.

So maybe, instead of feeling sorry and dismal, maybe, just maybe, I need to share this……American Cancer Society, and Relay for Life are a SCAM!  And I am not just pissed off about this because they don’t do squat for kids…..I am pissed off because there are SO, SO, SO many organizations that would do MORE with donations for ALL cancers.  I am also pissed off because MY employer supports Relay for Life and ACS.  Why?!?!?  I know there are a ton of intelligent people that can do the research like I have.  I know there are many many people that can do simple math, like I have.

Is it just laziness? Is it propaganda?? Or is it that American Cancer Society has been shoved down our throats for years….that they are helping people have more birthdays….that they are reaching for that cure to cancer……that they are “there” for Americans.  I call bullshit.

So here is the breakdown folks….

ACS received $847,861,530 in donations in 2014 (latest IRS form 990 information). Of which, $441,686,016 was used for salaries.  That is 52% of all donations go towards salaries.  Salaries like that of CEO John Seffrin who was paid $1,287,247, and COO Gregory Bontrager made $1,120,038, EVP David Veneziano received $1,110,883 and Sr EVP Joseph Cahoon Jr made $1,008,931 in 2014.

Another sick thought…..$17,144,816 was paid to lobbyists.  We all just love lobbyists, now don’t we??!?! Whereas $19,112,920 was paid for grants and assistance to Americans in need for programs like: Look good Feel Better program, Wigs for women, Transportation, guest room programs and other patient support systems….Can you see that just 2 million dollars more is paid to actual patients suffering from cancer versus companies that lobby our governments congressmen and women?!?! Seriously??!? Don’t you think that cancer patients deserve more?  I mean let’s get real here…..all those cancer patients and their families are raising money for ACS.

That brings me to fundraising expenses…..$201,303,109 was spent to raise more money. That is 23.7% of money raised goes into raising more money.  Huh, you say??? For every $100 you raise at the Relay for Life event…..$23 goes to raise more money.  Sounds like a great investment, doesn’t it???

My final, and honestly the most important part…..RESEARCH! According to the 990 IRS form Mission Statement for the American Cancer Society is this: To eliminate cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from the disease through research, education, advocacy and service.  Research you say?? What a joke!! $112,688,736 was spent on research grants in 2014.  That is a measly 13.2% of raised funds….OR $13.20 for every $100 raised.  I find this insulting.  Absurd.  And an absolute need for CHANGE!!  Don’t keep feeding into the Big Business of Cancer….

Image result for friends don't let friends relay image Seriously??!?! A world without cancer will NOT be due to ACS.  Sorry folks…..Relay for life does not support Research….

I did see that the revenue received by ACS from 2013 to 2014 did decrease by $71,668,244.  Maybe, just maybe America is waking up……

I would like to add…..A GIANT thank you to my daughter’s school (and Mrs Jensen) for changing our school’s mini relay for life event at the school…..Now a majority of raised funds (by the district teachers, students and families) goes to more fiscally responsible cancer organizations…..

baby steps…..must keep pushing forward…..my baby girl has got to be smiling down from heaven about that!!!

To ALL cancer survivors and their families…..You don’t need to walk the lap as a survivor at the Relay for Life event to feel accomplished….YOU already are!!

 

Peace~

“Purpose of Life is to Live with Purpose”

 

I have contributed to……

…..Slacktivism.  What is slacktivism??  It is the illusion that you are helping a charity or cause in some way by performing a task that is easy and that requires no real sacrifice in either time or money.  What the real problem of slacktivism is…..it leads the person to believe they have genuinely carried out a charitable act…..which can lead to the person less likely to follow up this act with an actual charitable act.  (Taken from the website thatsnonsense.com ).

What does this all mean?!??!?  In the world of social media I am guilty of asking all of my ‘friends” to Go Gold for Childhood Cancer Awareness Month.  Many, many, many of you have done so.  And we all get a warm and fuzzy feeling inside that we are actually DOING something.  Reality? Not much is really being done.  And I am guilty.

What can you DO???  Take ACTION!!  Donate.  Join us in the Walk to Remember and Honor Saturday September 12th in Bourbonnais, thanks to the AshleyCan Pediatric Cancer Foundation. Go here to register: http://www.active.com/bourbonnais-il/walking/races/ashleycan-pediatric-cancer-foundation-a-walk-to-remember-and-honor-2015

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Do you want to know what a donation or participation to AshleyCan gives you???  A non-profit organization that truly IS non-profit.  There are no salaries to Presidents or CEO’s.  Can the American Cancer Society say that?  Nope.  How about the Susan G. Komen?  Nope.  In actuality, 95% of all non-profit organizations can NOT say that they do NOT pay their CEO’s or workers.  I’m confused.  I guess I just don’t understand properly what the term non-profit means. Because someone is profiting off these organizations.  AshleyCan Foundation gives to cancer families in need.  Do you realize the impact financially to a childhood cancer family??  It is devastating.  And truly, that should be the last thing families have to worry about…..money and bills.

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May I also suggest others way to take ACTION???  How about donating to a reputable organization.  Here are my suggestions:  St. Baldrick’s, Alex’s Lemonade Stand, St. Jude’s, and Noah’s Light Foundation.  The last one is close to my heart.  Noah’s Light Foundation is specifically raising money for research to cure pediatric brain cancer……in ways that are innovative and new.  I am going to be participating in the Disney Glass Slipper run in February 2016, and I am participating for Noah’s Light Foundation.  Please consider donating at https://www.noahslightfoundation.org/donate/?page=CiviCRM&q=civicrm%2Fpcp%2Finfo&reset=1&id=651

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I also want to suggest that I realize many people do not have the resources to donate.  How about donating your time?  Sign up and do an Alex’s Lemonade Stand at a local store.  Ask your schools what are they doing to help find a cure for children fighting cancer.  Ask your communities to go the extra step.  And continue to share the Gold.  The more Gold we see, the more Awareness our kids get.  Talk about childhood cancer to anyone and everyone.

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Finally, we are still awaiting what is the next plan for our sweet girl.  Lurie’s Childhren’s Hospital in Chicago will be our new treatment place….we are just awaiting their review of Zayla’s medical history and MRI scans.  It has been almost two months since Zayla has had any treatment.  This gives me mixed feelings.  I am grateful to see her feeling so good.  Going to school everyday.  Feeling normal.  Doing normal teenager stuff.  On the other hand, I am worried.  We have gone almost two months of not fighting this beast.  I want answers.  I want action.  I want a forever cure for my girl.  Is that too much to ask for????

Take on the day…..Go Gold….and do something for the kids fighting cancer.

Peace~