The Pink Agenda/The Gold Agenda

WORK FOR A CAUSE, NOT APPLAUSEI stand by what I said in my last post about Susan G. Komen For A Cure Foundation – I do.  But I also know that it is corrupt.  A few years ago, they tried to sue other, smaller foundations that used “For The Cure” in their names.  I seriously do not want to know if they were successful.  I understand supporting breast cancer awareness and advocating for it, but this foundation is so far beyond corrupt that it’s not even funny.  They get their hands dirty and they do not mind it, especially when it makes them rich.  They may have started off right, with a noble goal in mind, “For The Cure,” but they are also going a lot of stuff wrong.  Please click on this link and read:

I Will Not Be Pinkwashed: Why I Do Not Support Susan G. Komen for the Cure

This is very sad.  They have the means to do great things, but they don’t.  They are not spending very much on finding a cure.  And it’s very sad, especially when it all started with a promise that founder Nancy Brinker made to her dying sister.

I do not remember anything about my fight with neuroblastoma, but I know cancer is horrible.  I have stood by helplessly while so many children have succumbed to it.  No childhood cancer advocate would even dream of  stealing from the kids.  I have been doing this for far too long to  give a damn about what I have.  I may not have a lot, but I give all I can.  The parents of these children stricken with cancer are forced to raise funds for medical costs and even research.  So I get every bracelet, every shirt, every sweatshirt that I am able to get.  No question.  I feel for these families,  Not only do they have their world turned upside down, but also their bank accounts are hurting,  I encourage them to never give up, of course, but when I am able to do more, I do it.

The Pink Agenda may be strong, but it is also weak, in that their motives aren’t pure.  I do know breast cancer warriors/survivors, and I fully support the cause.  I am a woman myself.  I get it.  But I too will not be pinkwashed, because I see the truth.  And that truth is ugly.

I am fully behind The Gold Agenda.  This fight for GOLD is personal and strong and pure.  All the best fights are.  Maya Thompson said on Facebook yesterday that she will bleed gold for the rest of her life if she has to.  I agree with that 100%.  We do not care about ourselves.  We just care about the fact that their are innocent, helpless children being diagnosed every single day and innocent helpless children dying every single day because of cancer.  Cancer is the leading cause of death by disease in kids.  When we try to do big things, we get shut down.

But mark my words, there will be GOLD.  Maybe not today, and maybe not tomorrow, but eventually.  And we will always remember those who have lost the fight.

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Tragedy is one of the Loudest Things in the World

Collage courtesy of Dawn Guler

Collage courtesy of Dawn Guler

Firstly, I must admit that I have not read or watched anything on Friday’s elementary school tragedy outside of Facebook.  I cannot bear it.  My dad has had CNN on the TV the last few mornings, and I thank GOD that I am hard of hearing and can’t understand what they are saying on TV unless I am reading the closed captioning,  When I look at the TV, the images and the story headlines are enough to bring me to tears.  I quickly look away.  It is not that I don’t want to cry for the precious lives lost – I do – but I know that if I start, I would have a really hard time stopping.  So I just allow myself a moment here and there, in which I tear up and then quickly find something to distract myself with.

One thing I know for sure:  God is not to blame for this tragedy.  No one is to blame but the killer.  I don’t want to dwell on dark thoughts, because that would not be helpful.  But I will say this:  It really says a lot about how messed up we are as a society when half the country is wondering how we can keep this from happening again, and the other half is wondering how to keep the government from taking their guns away.

Seriously, people?  On Friday, I said something about the 2nd amendment on my Facebook status:

It is mine own opinion that there is absolutely NO reason a law-abiding citizen should have semi-automatic weapons.  No reason whatsoever.

I have had this sick feeling in my stomach all weekend.  Still have it.  And when I read the names of those lost to this world, those innocent, precious lives, my heart shatters all over again.  I cannot imagine what it would be like to be a mother or father and have to take my child, or children, to school today.  I cannot imagine that fear.  That uncertainty.  That heartache.  I pray for these parents and I pray for each and every child in school.  School is supposed to be a safe place, but the reality is, anything can happen, and sometimes bad things do. We can’t control the actions of others, much as we’d like to.   There’s always that risk.  It’s horrible and frightening, but it is the reality of this world we live in.

I do NOT want to remember the name of the person who is the cause of this tragedy.  He does not deserve to be remembered.  Instead, I want to remember the victims’ names.  I want to remember their faces and their stories.  Their families and friends have a permanent place in my prayers.  The little faces of the children and those of the teachers who went with them are in my heart.    They will always be.  Tragedy is one of the loudest things in the world, and within it, I want to offer a moment of silence to remember.

“Blessed are the poor in spirit, for theirs is the kingdom of heaven. Blessed are those who mourn, for they shall be comforted. Blessed are the meek, for they shall inherit the earth. Blessed are those who hunger and thirst for righteousness, for they shall be satisfied. Blessed are the merciful, for they shall receive mercy. Blessed are the pure in heart, for they shall see God. Blessed are the peacemakers, for they shall be called sons of God.”– Matthew 5: 3-9

November Gratitude List Part 2

11.  I am thankful for our veterans, because without their selflessness, their sacrifices, their commitment, and their bravery, we could not live the lives we do.  We would not be free.  Freedom isn’t free.  It comes at a price, and often, that price is one of blood.

12.  I am thankful for the fact that, even though every now and then, we have natural disasters like the recent Hurricane Sandy, we can pull together and help one other.  Just letting someone know that you are there for them does wonders for the soul, yours and theirs.

13.  I am VERY thankful that the 2012 presidential election is over (praise the good Lord in Heaven!), and I pray for President Obama…  that he will accomplish everything he has said he will do and will say he will do.  I pray that he will be a strong source of change for the better, and won’t be hampered by those who refuse to believe in him.  The rest is in God’s hands.

14. I am thankful for the good things that are headed my way, for I know that they are coming.  God has said, “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)  Because of that, I will face the bad stuff with my head held high and NEGU.

15.  I am thankful, so thankful, for music, and I am beyond grateful that I am able to hear it.  Life is kinda like a musical for me (like Glee or The Sound of Music).  There is always, always, always a song in my head.  Never a quiet moment!

16.  I am thankful for food, shelter, clothing, basic necessities that I often take for granted.  I am trying to eat better, take more vitamins (really bad about that, unless I am on a streak, but my friend Jennifer B is right…  I do need to get better at taking vitamins.  Don’t want to get a deficiency of any kind and I will have more energy if I just take the stinkin’ vitamins, so, yep, thankful for vitamins!), and trying to clean ALL the things (thanks Hyperbole and a Half for that phrase, use it all the time now) more often.

17.  I am thankful for each day as it comes, because the truth is, I am so lucky to be alive.  God knows what he is doing with my life, and that is good enough for me.  Once upon a time, it wasn’t, and I demanded to know why, and when He was silent, I turned away from Him.  But I was led back to Him…  all roads lead home, no matter where I am.

18.  I am thankful for entertainment (TV, books, movies/dvds), for it is a great distraction, and takes me out of my world for awhile.  I need that for a little while each day.  I need to escape.  I need a little fiction mixed in with the reality, a little fantasy.  I need to worry about made-up problems for a while, get lost in another world.  It is because of this I have no interest in reality shows.

19.  I am thankful for the simple things that make life bearable when it is unbearable – pain relievers, coffee, hugs, words of encouragement, the comfort and security of my bed, the knowledge that I am loved and that I am fully capable of loving in return.  Also, body butter, to which I have just been re-introduced.  Ever since my last back surgery, my back itches endlessly, and I have gotten to the point where I am used to it, it doesn’t bother me.  My aunt Lisa gave me some body butter for my birthday, and ohmygosh! I could tell the difference. Instant relief.

20.  I am thankful for all the earth angels in my life, the people who lend a helping hand, who smile at me, who hug me, and make me feel safe and loved.  The ones who say the encouraging words I so need to hear, the ones who let me love on THEM.  And the ones from afar, the ones I have yet to meet in person.  I am thankful for you all.  Please know that even if we don’t meet on this side of life, we will meet in Heaven without a doubt.

November Gratitude List Part 1

 

I started a gratitude list on Facebook yesterday.  The deal is to list something you are grateful for every single day this month, but because I probably won’t remember some days, I am posting them all here, in 3 separate posts.  So here goes!

1.  I am thankful I can offer hope to other families when I tell them I am a stage 4 neuroblastoma survivor. There is nothing like hope, I tell you.  It is what inspires us to NEGU.  Childhood cancer advocating is a large part of what I was born to do.

2.  I am thankful that I was born into one of the BEST families out there (and yes, I’m kinda biased).  I have so many treasured memories!  My family never ever gave up on me, and I know that they will continue to never ever give up.  Because of that, I will NEGU either.

3.  I am thankful for my friends…  old and new.  You guys make my world go round!  There are too many of you to name, so I won’t even attempt to because of the risk of forgetting some of you, but you know who you are.  The love of my biological family and my adopted family (my friends) will always be one of the very best parts of me.

4.  I am thankful for the support and love of the close-knit childhood cancer community on Facebook, which welcomed me as an advocate and a survivor with open arms.  We NEGU for the kids.

5.  I am thankful the warmth of my home and for the coldness of the season (and the next) which just makes me appreciate the warmth even more.  Hot chocolate, my mom’s homemade soups and sweet treats, and warm, comfortable clothes make the cold tolerable.  Ha.

6.  I am thankful I live in United States of America and for the fact that I am free and capable of making up my own mind about things.  No one has the right to tell me that I am wrong, and if they do, so what?  I know who I am, and what I stand for, and that’s all that matters.

7.  I am thankful for my little dog, even though she thinks my bed is HERS.  I love it when she lays her head on my leg/ ankle/foot/whatever it may be.  The joy of having a dog, especially this dog, is indescribable.  Her company is priceless to me.  I even love waking up to find that she is edging me out of bed – because it means that she’s there and I’m not alone.  She just wants to be close to me.  She knows she is loved!

8. I am thankful for the gift of my lil niece, Miss Aliza.  She’s growing up so fast, and is so smart and funny and beautiful.  She helps me look at the world from a different perspective (that of a child) than mine.  Children have a tendency to remind us what is really important, and I pray that I’ll never forget the lessons Aliza teaches me.  Being her aunt is one of the greatest blessings of my life, and I cannot wait to meet whoever comes along next!

9.  I am thankful for the fact that, even though we hurt so much in this life, there is also great healing too.  In the end, everything will be okay.  If it’s not okay, it’s not the end.  Sometimes, the healing is not on this side of life, but in Heaven.  And that’s okay.  I am also grateful for the knowledge that, no matter how much I don’t understand it, God does NOT give children cancer.  He does NOT give anyone cancer or any other disease.  He allows it, that is true, but we just have to trust He has his reasons.  Perhaps that reason is so we could be at a certain place at a certain time.  We won’t know in this lifetime.  When we all get to heaven, this life will seem like a dream compared to eternity with everyone we love and will love in our lifetimes.  As little Starla Chapman said, “Just trust.”
10.  I am thankful for God’s plan, because even though I may not see what He sees or know what He knows, everything that is going to happen is happening on His terms, not mine.  If He just left me alone to deal with things by myself, I would not be here today.  I truly believe that.  He has GRACE and I have GRATITUDE, and it’s all going to be fine in the end.  I’ve surrendered my heart and I’m trusting.  That said, I don’t have any idea how anyone can look at the messes this world makes and not believe in something better, in a perfect place where everything is as it should be.  THIS can’t be all there is.  We have to be more than what we already are, because if there’s nothing else after this, there is no reason to get out of bed and do the same things we did the day before.  If there is nothing else after this, then hope dies.  And hope never dies.  It can’t…  because if it did, it wouldn’t be hope.

Every single day, my heart breaks

Yikes… This month is going to be the month with the least amount of posts in it… Oh, well. I have been a bit preoccupied…

It is the months of September and October that I am most glad I don’t get out much.  I don’t see the vasts amounts of pink that are overtaking the world.  Let it be said that I support all cancer research, but first and foremost, I am a childhood cancer advocate. Why? Because when I was not quite 16 months old, I was diagnosed with neuroblastoma, stage 4. Even though I don’t remember anything I went through, my body is scarred for life. Every time I get undressed it’s there. Every day when I shower, I see it. During my childhood, I tried to ignore it, hoping against hope that if I didn’t acknowledge it, then maybe it would fade away or drop off. But, of course, it didn’t. It remains. And so do I.

I don’t know about you, but when I was a child, I didn’t think very much about the future. When people asked me what I wanted to be when I grew up, my answer was always automatic: a writer.  I wanted to be a writer. I still want to be a writer.

I am a writer.

Beyond that, I want to be a published novelist.  But it is kinda hard to get published when I never finish anything I begin.  I want to be adventurous. But it’s kinda hard to be adventous when my body scares me. My whole life, at least since I became “aware” that I was a person, that I could do stuff, surprising stuff. Like read a book and transport myself inside the story, in another world.  Because I did not belong here in this one.  That I had the power to make someone smile because I smiled at them first. That I could speak out against this monster that steals innocent children’s lives and disrupts childhood every single day.

And of course, I think breast cancer is important. Of course, I think colon cancer, skin cancer, and prostrate cancer, lung cancer, and thyroid cancer, and all of the other adult cancers are important. I do not like to see anyone suffer, least of all the children. And the children need awareness, they need funding, they need research, they need cures. Like now. I fight for them. I will be their voice because, once upon a time, I was one of them. Childhood cancers are the least funded by the National Cancer Institute. I want to know why, in the years since I had it, only TWO pediatric cancer drugs have been approved by the FDA. I want to know why nothing has changed. And I want to know why everyone not directly touched be pediatric cancer looks the other way. Children are dying. They are DYING. Do you understand? What if it was your child or a child you knew?

Don’t buy into the media hype that pediatric cancer is rare. That.  Is.  Just. Not. True. I want to scream when I see that “r” word.  It is an ugly lie.  Every day, I find more kids, more angels. And every single morning, I wake up dreading checking Facebook or CaringBridge because I do not want to see bad news. Every single day, my heart breaks… And it will keep on doing so until these kids stop dying.

So do not talk to me about pink or breast cancer.  If you really want to talk about it, please know that you are going to get an earful (or eyeful) about childhood cancer. As things stand, you just do not talk about breast cancer to a childhood cancer survivor. Especially this one.

Scentsy Fundraiser for The Ronan Thompson Foundation

I was approached earlier this month by a Scentsy consultant, Jennifer Counts, and she wanted to do a fundraiser for a charity of my choice.  Of course, the first one that sprang to my mind was The Ronan Thompson Foundation.  Ronan is very special to me, as he was the first child I found and followed, in early 2011.  One night, when I couldn’t sleep, I was randomly surfing the web (or not so randomly as I was googling cancer related stuff), and suddenly, Maya Thompson’s blog came up.  Maya is Ronan’s mama, and she is just as spicy and fierce as Ronan was.  I think I stayed up the whole night, reading the blog from the beginning.  From the start, my heart was stolen by this gorgeous blue eyed little boy.  Completely and utterly stolen.

He was… how can I describe him and do him justice?  He was a spicy little monkey, that’s for sure.  He was the essence of that quote by Henry David Thoreau, the quote his mama loves and uses whenever possible – “All good things are wild and free.”  Last month, when Taylor Swift debuted her song, “Ronan” on the Stand Up For Cancer telethon, when I could not see because of the tears streaming down my cheeks, I knew.  I knew Ronan was taking us places.  He IS taking us places.  I so wish it wasn’t him.  I wish so much that he was where he belongs, rejoicing with his family in the wake of the news that he’s going to get a little sister, something he so wanted.

Maya has a huge vision for The Ronan Thompson Foundation.  She wants to build a world class neuroblastoma research and care center, but she cannot do that without lots of help.

Then Jennifer Counts came to me via my Pediatric Cancer Awareness page on Facebook.  She said she “liked” my page because she lost her four year old daughter, Bella, to leukemia last year.  Bella’s story is horrific because she contracted a flesh-eating bacteria shortly after beginning chemo.  Jennifer has been a Scentsy consultant for about 5 years now, and when she had Bella, she was very excited to “to find a product that was safe around our baby, looked fantastic in my home, and also provided a night light for those late night trips back and forth to the crib! I appreciated that Scentsy was safe, flameless, soot free AND much less expensive that the products I was limited to before.”  When Bella was diagnosed at 3 years old, the little family’s world just fell apart.  Bella loved her Scentsy buddy, and it would accompany her to the hospital, along with her Scentsy plug-in with her favorite scent (Pretty in Pink).

When the hospital bills started piling on, Jennifer panicked.  Fortunately, her local Scentsy consultant offered to hold a fundraiser for Bella.  Jennifer accepted the offer, and was pleasantly surprised when the fundraiser resulted in over $1,000 in just one week.  She soon joined the Scentsy consultant family and hasn’t looked back since.  It allows her to work from home, and when Bella was sick, allowed her to schedule work around hospital appointments and caring for Bella.

Bella has two official Facebook pages, Blood for Bella’s Informational Page and Buddies from Bella (Scentsy Buddy Challenge).  Jennifer says the latter is “a page dedicated to Scentsy Buddies that are donated to children in hospitals undergoing cancer treatment. Each buddy is delivered with a tag around its neck with a story about Bella and her Buddy Lenny. it gives kids a chance to post photos with their buddy and supports to send notes of encouragement to the kids.”

Bella, like Ronan, endured so much.  And like Ronan, she should still be here, healthy and happy.  I just know that Ronan and Bella became fast friends and that they are delighted that so much is being done in their memories.  If you would like to join the fundraiser for The Ronan Thompson Foundation, you can do so by clicking here and joining the Ronan party.  It’s open until the 30th, and once it is over, Jennifer will donate 100% of the proceeds to The Ronan Thompson Foundation.

Because we have a hospital to build and so much more!

Thumbs Up for Lane

I apologize for not writing this month until now.  I’ve been busy with childhood cancer advocating, which has quickly morphed into a full time job. Last night, a thirteen year old boy named Lane Goodwin passed away.  You may have heard of him.  He had been fighting this monster since March 2010.  He was the boy who, whenever someone would ask how he was doing, he would give the Thumbs Up sign.  He was the boy who, while waiting for a order of crab legs after an appointment last month, started seizing and just would not stop.

He had alveolar rhabdomyosarcoma (cancer of soft tissue), and it had spread into his brain.  He held on for longer than anyone expected him to.  He wanted to be a voice for childhood cancer, wanted to help put a stop to it.  His family – his mother, Angie, his father, George, and younger brother Landen – is determined to fight to end childhood cancer, so that one day, no other family will have to lose their precious son or daughter.

There were no limits to the love surrounding Lane as his battle here on earth came to an end, and I believe that love will be his legacy.  I saw celebrities from members of his favorite team (St. Louis Cardinals), tv and movie stars (yes, even Johnny Depp in the picture above – I love that man!).  It seems as if everybody across the country knows about Lane Goodwin, and really, why shouldn’t they? I am at a loss for words right now, trying to think of how to describe Lane’s impact on me, on the Facebook community.

His presence in this world is irreplaceable, and his loss immense.  There are just no words, just a ginormous empty hole where he used to be.  I know we will probably never fill up that hole completely, but if we start with all things Lane was and with what he stood for, we’ll be well on our way.  And I have no doubt he’ll greet us at Heaven’s gate when it is our turn to go home with his trademark thumbs up and his big grin.

Thumbs up, Lane!  We love you, buddy, and we’ll be seeing you.