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”

Must push forward….

Today I want to share something I posted exactly one year ago….

Oh how I would LOVE to even go back to this shitty time.  And all those shitty feelings.  Because my girl was at least still HERE.  With me.

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My intentions for pointing out the lack of Zayla’s friends showing up to the Walk this weekend was not to 1. Get excuses from anyone or 2. Make anyone feel bad. My intentions are to show all of you what is OUR life. Everyday.

*******This past weekend there were 22 girls who volunteered at the AshleyCan Walk….22!!  That is 22 more than last year! *******

September is an incredibly emotional month for our family. Especially Zayla. Every year we try to raise awareness. Get people to join in our fight. Some years, the support is great. Others? Not so much. I can see why other childhood cancer families just walk away after treatment. Never looking back. Because this is RAW! Painful. I get it.

When treatment to cure your child turns into years…..and even decades…..people lose interest. It’s sad. It’s scary. We all have our own lives….and we are all very busy. Yep. I get it. I’m busy too. But I am not allowed to turn away. Ignore. This is MY life everyday. And it will never change.

There are so many people who support Zayla. I know this. Many days it is THE only thing that pushes me forward. I often get the comment….”you are so strong” or “I don’t know how you do it”…..Well, some days I don’t know either. The thing is…..I don’t have a choice. You just do it.

I’m not very uplifting these last two weeks…..I can barely support my sick daughter and keep my shit together without crying. I have moments of rage. Insane anger. Then terrible grieving and crying. You may not see this. But it is there.

God, this child of mine is so, so, so strong!!! You see, this past weekend she not only faced talking about her cancer without any peers present to support her……but she also asked numerous girls her age if she could be a “twin/triplet” with them for a stupid Homecoming dress up day. I know….this is small in the grand scheme of things. But to her it WAS everything. At the moment. Each of the girls that Zayla asked (six total) ALL said….sorry, I am already a twin with someone. I ask all of you……what in the world is wrong with our youth???!?!?!?!?!?!?!?!? No one wants to ask my daughter to be included???? I just about can’t stand it. I can feel the anger rising up in me. I want to protect my baby!!! Because, God knows I can’t protect her from this cancer diagnosis.
I am forever grateful to Zayla’s new friend Jaid. Her response to Zayla’s asking…..Well of course I want to!!!!

*****I pray that those who have shunned my daughter in the past, can now realize that life IS short.  And make a change.  Be the support to the lonely.  Be kind.  You may not think your actions can impact another human….but they do! *******

This story is only one of many…..it is a constant struggle for Zayla in school. Not only educationally, but socially as well. From lunch table struggles, not being asked to go to “friends” houses, not being able to play volleyball because she is too weak, struggling with simple homework tasks that she use to enjoy…..it’s heart wrenching.
This is our life. And I try to savor every minute of it……because we don’t have a crystal ball to see the future. And when she giggles…..it’s like everything gets washed away….if only for a few minutes.

Must push forward….although the memories that I come across everyday in the world of FB can be brutally painful….I know I must push forward. Maybe if I say it enough it will actually be true?!?

Pushing forward….I want to share an idea that was brought to me by my dear friend Karla.  She suggested we do a cookbook for a fundraiser to raise money for Zayla’s scholarship fund.

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What an excellent IDEA!!  So, with that being said, we will be organizing a recipe collection to put in a nice hardcover spiral book that will be sold to raise money for a culinary scholarship for another student.  Since my girl will NOT be able to be the chef she longed to be.

trying to be active for you baby girl….

miss your sweet face.

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Some things never change….

Some things never change…..or do they?!?!

Social media has a way of making us see things.  For me?  I feel like I am seeing things with a different lens.  A foggy lens.  A lens that I have to wipe tears away from in order to somewhat see.

Lately I have been seeing the battle language.  Now, when you are in the thick of battle this language can be inspiring….uplifting….and often gives hope.  Words like….Stay Strong, Don’t give up, or Fight!! This battle language has a different meaning to myself.  Now.

Oh yeah, I use to raise my fists and want to fight with the best….Hell, Zay’s mantra forever was, ‘Fight Like a Girl’.  But when Zayla passed away, I often thought to myself….do other’s feel/think that she gave up? Or that she didn’t deserve to beat the monster? Or that there was something that we just didn’t do right?  Didn’t believe strong enough??

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I would find myself getting angry….not only with myself, and the circumstances but the audacity of others to make the statement stay strong, or fight harder…..Like the cancer patient isn’t going to try like hell to survive??!?  Or the grieving parent isn’t going to keep breathing? or stay strong? Because we don’t have a freaking choice!!! …..I know there are moments that I thought this could be true, but a broken heart does indeed keep beating.  Thing is, we all have a shelf life.  Everyone is going to die someday.  We just never think we are going to outlive our children.  It’s not natural.  And it is so unbelievably unfair.

Today my FB memory from last year was a long post about Childhood Cancer (imagine that).  I am going to share it today, because some things never change…..the heartbreaking thing that changed since last year was that my daughter isn’t here anymore.  She “won” her forever cure….just not the way we all had hoped.

*****************************************************Not sure if all my Childhood Cancer Awareness posts have “lost” any of you….September is especially hard and emotional for me. You see, I can only vaguely remember what life was like before. Before I heard that terrible 6 letter word. Cancer.

We coasted for several years without the constant “bad” thoughts of cancer…but yet, it was always still there. Always in the back of your mind. Other cancer moms/dads get it. Once you have been forced to endure this new normal….everything changes.

That boy I posted about last week…whose story was so similar to Zayla’s. He died. At home. On hospice. 14 years old. And that could be ANY of your children/grandchildren/godchild etc… Cancer strikes 1 out of every 285 children. Scary. (And now we know it was also our sweet Zayla’s fate as well)

That being said, I am going to let you all in on something. I am at times selfish. There are a lot of things that I just really don’t give two shits about. But I am recognizing my faults and taking the advice that we attract who we are. So if you are angry, you attract anger. If you are happy, you attract happiness. Deep, I know.

My goal is to strengthen myself by defining positive traits that I value most and want to see in others. So, from here on out, if all you do is bitch and moan about this and that….I will have to say farewell. I want to attract positivity, so therefore I must surround myself with positiveness.

Most posts that I find myself reading on Facebook that are mean and hateful are things that mean NOTHING compared to a family burying their child too soon. Get over yourselves people. Be grateful that your family is intact. Start taking the mantra that somewhere, someone has it much shittier than you. Because it is true. It can always be worse.

I will continue my awareness and action posts for the remainder of this month. It IS what I care about. In ten days Ms Zayla will be having her MRI. We are accepting any and all positive prayers, juju, pleasantries….you get the picture. This is an important MRI (as all are really) but this is one year later. One year is a big deal in the brain tumor time frame.

And if you have been challenged to do the Whipping Childhood Cancer….Zayla LOVES to watch these videos. Call it inspiration sprinkled with some humor. It is support that helps her get through the “crappy” days. I just want donations for research. A gentler treatment that cures would be nice.
Peace~**********************************************************

Miss you baby girl.

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Big Pharma, anyone???

****Caution: There may be Foul Language Ahead****

So, I have been seeing much discussion lately about Big Pharma aka Pharmaceutical companies that make all the “wonderful” medications, vaccines, chemo drugs that Americans need to survive….

Anyways….the discussion of late has been the increase of the EpiPen.  The EpiPen is needed for individuals who are having an anaphylaxis event….usually due to an allergy to bees, peanuts, etc..

The price of these said EpiPens have increased to over $600 for two….a cost that most Americans cannot easily afford.  So what do they do?? I hope that the majority of us believe that LIFE is worth more than $600.

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The thing is…..this price gouging of life saving medications is nothing new.  Last year there was the Martin Shkreli price gouging of Daraprim (live saving medication for Malaria) or J Michael Pearson’s price gouging of Syprine (for Wilson’s Disease) went from a copay of $700/yr to over $10,000/yr.

What IS new this time??? The CEO of Mylan Pharmaceuticals is Heather Bresch.  Ms Bresch is the daughter of Senator Joe Manchin of West Virginia.  Hmmmm….sounds a bit scandalous if you ask me.  AND….the EpiPen affects more people.  That, in turn makes a louder outcry when insane gouging of life saving drugs occurs.  Poor choice Ms Bresch.  You have officially pissed off millions of Americans.

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And the response from Mylan Pharma is that the increase of the EpiPen listing price is necessary for the company to recoup it’s investment in acquiring this drug.  Huh??  Here’s an idea…..that most business minded people can understand….you make your business cuts in other areas.  How about the lofty salary that you make??  (Heather Bresch’s income for 2015 was $25.82 million dollars!!!)

Quite honestly, the best shifting of blame that I have heard from Big Pharma is that the insurance companies have decreased the amounts that they cover, therefore the patients/customers must pay more at the Pharmacy counter.  Well shit!  Someone has to pay for those lofty annual CEO salaries…..might as well be the patient who needs the med, right?????

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So, why do I give a shit about any of this? I have seen and felt the impact of costly life saving medications being too expensive.  Three years ago we battled with our insurance company to get a very costly chemotherapy med approved for Zayla.  It was excruciating the amount of time, effort and tears that I endured trying to get this medication.  Today?? I am angry.  Angry that NOTHING has changed.  In fact, things have gotten worse.  Life saving medications should not be priced to the point that people cannot afford them.  Period.

Healthcare and medications should be made available to everyone.  Period.

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Why are we not outraged that CEO’s make OBSCENE amounts of money???  Are the CEO’s making the drugs??? Ha! Don’t think so.  You have scientists and doctors that painstakingly spend countless hours researching to find better treatments.  Yet, we are all at the mercy of Big Pharma AND our government to get the cures we need.

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Something needs to change.

Here’s a little glimpse of reality…..Big Pharma CEO’s salaries:

  1. Len Schleifer, Regeneron, $41.97 million dollars
  2. Jeffrey Leiden, Vertex Pharm, $36.64 million dollars
  3. Brent Saunders, Allergan, $36.61 million dollars
  4. Martine Rothblatt, United Therapeutics, $33.21 million dollars
  5. Lamberto Andreotti, Bristol Myers Squibb, $27.06 million dollars
  6. Heather Bresch, Mylan, $25.82 million dollars
  7. Kenneth Frazier, Merck & Co., $25.03 million dollars
  8. Alex Gorsky, Johnson & Johnson, $24.99 million dollars
  9. Robert Hugin, Celgene, $24.24 million dollars
  10. Ian Read, Pfizer, $23.28 million dollars

Total bank for the top 10 is $298.85 million dollars last year.  That is INSANE!!!

So, go ahead and tell me….how do we not blame Big Pharma??

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If my daughter’s brain cancer would have been more profitable one of these Big Pharma companies MAY have researched more and perhaps found a cure.  But you see…..childhood cancer is NOT profitable.  There just isn’t enough sick kids.  Not enough deaths.  Instead?  We will keep the revolving door going…..so these big Pharma companies can get there payday.  Because that is what matters in America, right??? The Almighty dollar.

Screw you Big Pharma.

Miss you baby girl.  Every day.  Every minute.

Here’s the thing…..

Here’s the thing…..life is about choices. Really. It is.

Most days, I choose to get out of bed and play off this incredible cruel joke of living without my daughter.  I choose to.  Nobody forces me to.  I just do it.

Some days I choose to let miserable people invade my thoughts.  Seems silly, why would anyone choose to let miserable people invade their thoughts?? Well, that’s what you are doing when you let bullshit into your life.

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So today?? I am CHOOSING to not let my thoughts and day be invaded by things that don’t matter.  Things that are NOT in my control.  Because the only thing that you can control is yourself and your choices. Some people do not have very good self control…..I have been known to occasionally be one of those people. But, even when I am at my worst….I still have choices.  Always have.

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So what does all this mean really??? I don’t want to be the “victim” of childhood cancer. It has already stole so much from me and my family.  I don’t want to be just another grieving mother who is so hypersensitive to everything around her. Always in a funk.  Often angry. And so very, very sad.

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I want to choose to change my thinking.  Because, whatever is going on in my mind, is what I am attracting to myself.  Simple law of attraction. I want to live a life of purpose.  Make a difference.  Have my life make a difference…..to someone.  Anyone really.  Stop doubting…..have more faith.

 

Live more like Zay.  That’s it.  I want to be more like Zay.

Miss you baby girl.

 

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”

 

Not going to bring us down…..

did not get the results we were hoping for on the more detailed MRI. Appears that there are some nasty cancer cells trying to start the tumor shit show. No chemo this week. We are reconvening and with other specialists to devise a new plan of action. Will hopefully have a better idea by early next week. While this news was not what we wanted to hear…..we are NOT going to let this news bring us down.

So today….we are going to play in the sun. Screw you cancer!

This past weekend Zayla was able to do a small Bear Hug from Bear Necessities. She chose to attend the Dave Mathews Band concert at Alpine Valley. We had an amazing time (minus lots of drunk kids around us). Making memories. That is what our focus is. Always making memories.


     I do have one request from all of Zayla’s friends…..please, please, please start including her more in your lives.  Even if it is a simple text now and then…..this girl NEEDS the support!!!  And unfortunately we have seen less and less of many friends…..The support that Zayla received when she was first diagnosed….and the next year really….was awe inspiring.  We can not thank everyone enough for all of the LOVE and SUPPORT that has been shown. zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

One of the trials that we have been discussing with Zayla’s medical team is using Immunotherapy and antibodies to attack her tumor.  I really and truly believe that the way of a cure for our girl will be through innovative treatments such as immunotherapy.  We want a Forever Cure!!!  I have decided to start training for the Disney Glass Slipper in February 2016.  I have chosen Noah’s Light Foundation to be who we will raise money for.  This organization uses ALL of their money to fund innovative cures for brain cancer…such as immunotherapy.  Please consider donating or joining us…..

https://www.noahslightfoundation.org/donate/?page=CiviCRM&q=civicrm%2Fpcp%2Finfo&reset=1&id=651

Go make memories folks…..

Peace~

The next chapter…..

on Thursday, I had a meeting for Zayla’s IEP for high school. High school, YIKES!! All of the support staff the last two years have been amazing. Zayla’s case manager last year was Roz. Zay was heart broken to leave her, BUT this years case manager, Laurie, WAS amazing as well….these people become such an integral part of her school life. They see all of her frustrations with her new learning disabilities and help her “try” to be her best. The meeting went really well, and we have some great ideas to help Zay get the best experience she can from high school.

Today, I want to share a little bit.  Share how childhood cancer, or in our new world, teen cancer, has changed our lives.

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Time. Time is a funny thing.  I still get excited and wish for certain events (vacations, concerts, parties, etc..), BUT….in a different way.  I often feel myself wishing for time to slooooow down, please.  Nothing new to most people, I’m sure.  I feel as if “borrowed time” is around every corner.  When discussing Zayla’s future in high school….it really was hard for me to look that far ahead.  Maybe it is the looming cancer. Always hovering over our thoughts and feelings. It is hurtful. We TRY to not let teen cancer control our lives.  But, let’s be honest.  It often does.

Time can also be peculiar when it comes to treatment and the growing independence of adolescents. When Zayla was much younger and battling cancer, it was actually easier.  Here you have a young child, that relies exclusively on you to make her decisions.  Often life altering and saving.  This time around it is much different.  Although I am beyond words happy to see Zay be the young teenager she is today….it is also followed by letting go.  Letting go of the control.  Sure, this is an issue with ALL teenagers.But, can you imagine letting go of the control when it comes to life saving measures???!?!?! It is hurtful. There are moments in Zayla’s life that she will voice that she is just plain tired and done with “it all”. Really can’t blame her.  We are coming up on two years of fighting brain cancer. *sigh* But it is our job to not only encourage her to be independent, but to also make informed and educated decisions for herself. For now, she is in the fight mode. But who is to say that this won’t change someday??

Change. So many things have changed over the past two years. Hell, really the last 10 years. Some good. Some surprising. And some not so good. I have been reminded in the past several weeks of how I have changed. Fellow cancer mom, Kathy, has voiced her displeasure of how people respond to her daughter’s new battle with a brain tumor. Her words are my words. Frustration with those who have stepped out of our lives. This is nothing new. Seen this the first go around with the leukemia diagnosis. The “know it all” advice….from people who I am sure mean well….but just don’t get it. It is hurtful. It can sometimes be relentless. Friends lost. Friends gained. Wonderful support, followed by loneliness.

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Loneliness is actually perpetual. Brought on by my own fears and disdain. It is hurtful.

And then there is the anger. I find that I am less tolerant of bullshit. Really, who has time for that? I want to surround myself and my sweet fighting girl with positive, supporting and loving people. I am selfish right now. If I don’t feel like participating in an event or with society. Then I don’t. Take it how you may. (Hence the perpetual loneliness). If you see me looking distant or not interested. Sorry, not sorry, I am probably not interested. I have A LOT on mind. If you can’t get that….oh well. I am constantly wavering between absolute HATRED for what my family is going through, to trying to find peace and joy. Don’t tell me that there is a purpose for this. Not sure I will every see that. And it’s hurtful. I mean really…..purpose in pain and misery for a child??!?!??

Last weekend, I had an idiot ask me, “So, what’s the prognosis?” Seriously??!?!? My response to him was my kid is NOT a statistic. Not a number. Perhaps I should have shared with him the percentage of asshole that he is. I didn’t. Must have been a good day. Note to all: Please don’t ask a parent what the prognosis for their child is. It is hurtful.

Yet, despite all the struggles, I still see good.  Zayla gearing up for her 8th grade promotion this Monday night.  She is attending various graduation parties.  I am grateful.  Grateful that she is able to participate in ALL of these things.  Seeing her excited about having bonfires at our house.  Planning and giggling.  For twenty bad things that can be had by this teen cancer…..I can get just one giggle or smile, and my heart melts.  I can still see the sunshine through these dark clouds.

I pray that those around Zayla can have patience and understanding.  And I pray for peace and normalcy for her.

Peace~