RIP, Zach… Your story will continue to inspire others

,Zach Sobiech died yesterday.  You may not know who that is, but you will…  just go here and watch the video.  He’s a singer, and he’s eighteen, and oh, yeah, he had cancer – osteosarcoma, which is bone cancer.  He was diagnosed when he was 14, and he decided he wasn’t going to waste any time.  He became a rock star…

Rest in peace, Zach…  Thank you for inspiring us with your music and spirit.  We love you, and we won’t forget you, and we won’t forget what you taught us…  You don’t have to be dying to really live your life.

“You can either sit in the basement and wait, or you can get out there and do some crazy stuff.” ~ Zach Sobiech.

No fear, just faith!

May the Fourth be with you

Happy Star Wars Day!  The month of May will forever be a hard one for me, because nearly two years ago, the most perfect, beautiful little boy in the world was stolen by childhood cancer.  I did not know him personally, but he and I will always be connected because we both fought the same battle, with different outcomes.  He is no longer here to be spicy, to be wild and free, to cause trouble like he so loved to do.  He is not here to enjoy his new baby sister Poppy with the rest of his family.

Because of freaking neuroblastoma.

I know this is brain cancer awareness month, but cancer does not care what month it is.  It did not care that it stole Ronan’s life just 3 days before his 4th birthday.  He should still be here, about to turn six, this year on Mother’s Day.  I know for a fact that Maya would not mind sharing her day with him, because that would mean he was still here.  He loved Star Wars, and I imagine all his birthday parties would be Star Wars themed until he outgrew his love for it, if he ever did.

Two years ago, I started following Maya Thompson’s blog on here, before I even started this one.  Maya is Ronan’s mama, and through her words, I fell in love with this little boy.  No words can describe how much each and every word she wrote on there touched me.  I knew, and still know that, without a doubt, she would be the one who changes the face of childhood cancer, with her mafia behind her – Maya’s mafia of soldiers against childhood cancer.  Not just neuroblastoma, but pediatric cancer as a whole.  Because Ronan should still be here.  All the children should be able to grow up to be anything they want.

Maya and Ronan Thompson inspire me, just like they inspired Taylor Swift to write (compile, really, since she took Maya’s own words from her blog) and perform this song at the Stand Up to Cancer telethon last September.  You can watch the clip of her performing it live here.  You will cry, but Ronan deserves your tears because he never should have died in the first place.

May the fourth be with you, Ro. Wherever you are.

Go Gray In May for Brain Cancer Awareness Month

 

It is possible to love someone you never even met.  It is possible to have your heart broken by perfect strangers.  It’s just how the story goes if you are a childhood cancer advocate, or any advocate, for that matter.  Everyone has their heart broken at least once or twice in their lifetime.  When we feel something so deeply, when it is as personal as the fight for childhood cancer awareness and advocating for cures is for me, we can’t help but have our hearts broken over and over.  I have said before on here that every single day, my heart breaks.  My heart breaks for the children lost, for the parents, and the families, for the world as a whole, because the world will never again be touched physically by a particular child ever again.

A couple of years ago, I read this book, “Notes Left Behind“ by Brooke and Keith Desserich, and was introduced to the horror that is Diffuse Intrinsic  Pontine Glioma (DIPG).  DIPG is a brain stem tumor, and because of the delicate location, it literally has a zero percent cure rate.  It is difficult to treat. Before I picked up this book, I had no idea what it was.  My experience with cancer before reading it was regulated to neuroblastoma, which I had, and reading books about characters with leukemia.  This book opened my eyes to a lot of things when I read it in 2009, but it wasn’t until two years later that I really began advocating for pediatric cancer (more on that later this month).

This book was written about a little girl named Elena, who had this awful tumor.  I have mentioned her before on this blog, but I have never really talked about who she is.  Today, if she was still here, she would have been 12 years old.  I look at her picture now, and my heart breaks all over again for her family, for the world as a whole.  She was and is so beautiful.

 

Elena… There are no words, and yet there are ALL the words (and tears) for her.  At five years old, she was diagnosed with DIPG, and during her 9 month battle with the disease, she hid hundreds of love notes between throughout her house and the houses of relatives.  They were in between pages of books, in cupboards, in bags, even tucked in with clothes stashed away for winter.  Each one is like a hug from their little girl.  Her parents did not tell her that she wasn’t going to make it through this because they did not want to focus on the cancer, but rather on being a family and on doing the things that Elena wanted to do.   Despite having radiation (chemotherapy does not have any effect on this cancer), Elena deteriorated rapidly, losing her ability to speak and eventually becoming paralyzed.  But this brilliant, brave little girl refused to be silenced.  She continued to write love notes for her family, including her grandparents and her favorite dog, who belonged to her aunt.  Her parents found the first note a few days after Elena passed away in August 2007.

The book was their way of preserving Elena’s memory for her younger sister, Gracie, who was just 5 years old when Elena died.  I read it and cried over it, and fell in love with this precious little girl, whose dreamed of being a mother and a teacher.  She was, and is still, so amazing.  She was the first person I thought of this morning when I opened my eyes.  These days, I often wake up long before my alarm goes off.  I am unsure about what wakes me up.  I fall asleep exhausted but I don’t stay asleep for long, and I know it’s because of the children…  Childhood cancer is the NUMBER ONE cause of death by disease in children.  Every 4 hours a child dies from one form or another.  Pediatric brain cancer is the most deadliest form, and DIPG, well, just look at the statistics.  Zero percent cure rate.

It’s the first day of May, which is National Brain Cancer Awareness Month.  Please do what you can to spread the word…  Wear gray.  Buy “Notes Left Behind” and educate yourself and others.  And most of all, in the words of 12 year old Jessica Joy Rees, who also had DIPG and passed away less than a year and a half ago, NEGU (Never Ever Give Up).   The children are waiting…

One Word, One Year

 

2013 holds a lot of promise.  It is a brand new year, and with it comes a lot of hope.  Hope that maybe this is the year that the children get heard, that childhood cancer gets a lot more than 3% of federal funding.  As TheTruth365 film pointed out, both the White House and Congress voted unanimously in 2008 to increase funding for childhood cancer research. This plan fell by the wayside when they didn’t properly fund the Conquer Childhood Cancer Act.  Because of this, nothing has changed.

When I think of this, I think of all the little lives lost, I get so upset.  These children could still be here, if only.  They SHOULD still be here.  It is utterly mind-boggling to me that if only politicians put the future of this country first, we wouldn’t be in this mess to begin with.  Children would not be dying.  There would be cures.  There would be hope.  When parents receive a cancer diagnosis for their child, the first question that springs to mind would not be, “Is my child going to die?”  Instead, the thoughts would be like, “Okay, breathe, what do we have to do to beat this?”

This year, I am going to focus on one thing:  advocating.  One word, one year.  Things can change.  I know it.  I believe it.  I don’t mean I have to do more – I mean I have to utilize what I have and use it for the good of these children.  I have words to give.  I have a truth to tell.  Even if it means that I have to tell my story so many times I am practically blue in the face, I will do it.  Children deserve better.  They deserve every chance at life, every opportunity.  They have to be protected.   They are the future.  They need to be treated like it.

Advocate:  my one word for this year.  What I am focusing on, what 2013 will stand for, is the children.  I will advocate for them, because once upon a time, I was one of them.  I got this one word idea from SheLoves/Magazine.com.  It makes sense to me.  Before, I think I was trying to focus on too many things at once and gave up, because it got to be exhausting.  No more.  I will focus on advocating for those who deserve so much more than what they get.  I will advocate for those who cannot speak for themselves.  I will advocate for those who deserve every single promising opportunity that life tosses their way.

As SheLoves/Magazine.com states, my one word isn’t another to-do list.  It is simply a direction I want this year to take.  The last two years since I have started going down this road have been eye-opening.  I know what I am doing now.  I know where I want to be.  And that is exactly where I am right now.

I challenge you to choose one word for this year as well.

 

Comfycozys for Chemo

When one is diagnosed with cancer, any and all sense of modesty and dignity is stripped away.  It is not a comfortable feeling to have nurses tearing at your clothes as if they have all the rights in the world to do it.  They try to be gentle, and they try to be respectful, but let’s face it…  no matter how much they try, patients are still left feeling not only sick, but helpless as well.  Often, at the time, they are too sick to care, but more often than not, it comes back to them later.

Comfycozys for Chemo was inspired by a girl from Phoenix, AZ named Amanda Hope, who was diagnosed with acute lymphoblastic leukemia when she was nine years old.  She endured three long years of harsh chemotherapy treatment, and finally had a “No Mo’ Chemo” party in March 2011.  But a few months later, at the end of June, she was sick again.  Her parents were informed that there was a mass in her brain, and that she needed a biopsy in order for the doctors to figure out what it was.  Amanda’s two sisters were tested to determine if they were candidates for a bone marrow transplant. Her oldest sister was a perfect match.  Amanda spent her time preparing for the transplant – receiving more chemo and radiation and another surgery to insert a Broviac® port intended for fluids, medications, and blood work during her transplant and recovery.   All this time she kept smiling, praying for other children. She mourned the loss of her hospital friends along the way and celebrated with those who were still in remission.

A week before her scheduled transplant in January 2012, Amanda’s cancer cells mutated. Chemo was like candy and she went from 0.05% cancer to 80% so she was no longer a candidate for transplant. Amanda never gave up hope and always believed in her healing. Amanda fought hard all while making everyone around her smile and laugh. She also had a dream. Amanda’s dream was that one day when she was healed she would make a clothing line for kids going through chemo that would allow them to keep their “modesty and dignity.”  Amanda always hated her body being exposed to a room full of strange doctors, nurses, and others and wanted better for other children going through the same thing.

Amanda lost her battle here on earth on March 30, 2012, but her dream lives on.  A week after her passing, Amanda’s mother launched a Facebook page to make her daughter’s dream come true.  “Comfycozys” are ”special T-shirts are designed with zippers, pockets and slits to allow access to chest-ports without exposing the child’s body and to allow for storing of the IV lines preventing tangling and pulling on their clothing. They are made in the fun, tie-dye colors that Amanda loved so much.Amanda’s spirit of life and integrity of self continues to inspire us all! Her dream is coming true. Five hundred children will receive “Comfycozys for Chemo” T-shirts this Christmas. By next Christmas, our goal is that every child in Arizona who needs a port will receive a “Comfycozys for Chemo” T-shirt from Amanda Hope’s Dream. With God’s blessing, please touch a child’s life today by supporting this amazing cause!

I think all children fighting cancer throughout the country should have a Comfycozy!  It is such a great idea!

DISCLAIMER:  The italic parts of this post are direct quotes from the ComfyCozys for Chemo Facebook page.

A Broken Hallelujah Part 1

  I didn’t understand for the longest time why I was the way I was.  I think that is why I curled up into myself, trying to protect the one thing I thought I could protect: my heart.  But it was already broken.  I think it broke when my body did, after my cancer battle, after the encephalitis broke my body.  I am all right now, with the brokenness, because I know that where I am weak, He is strong. But of course, I had to learn that the hard way. My whole childhood was a process of grieving a life I would never have again.

1.  DENIAL/ISOLATION

My elementary school years were spent in a haze of denial, and probably, the same can be said about my middle school years.  From preschool to maybe fourth grade, I didn’t really think about the fact that I was different than the other kids.  I was young, and they were too, and they were more accepting of me back then.  By fifth grade though, they started to ignore me.  And sometimes, at recess, the boys would tease me so that I would start chasing them just to get them away from me.  And they would laugh.  At me.  I had  a walker (still do), and so I think the other kids didn’t really associate me as being one of them.  I was the “weird” one.  I did not have feelings.

But of course, they were wrong.  Of course, I had feelings.  And of course, they were easily hurt.

But, oh, I had friends, both real and imaginary.  I hung out at school with a couple girls, and we had a very messy relationship.  I don’t want to get into details, but you know how girls are.  I started crying every single day.  I didn’t understand anything, and probably understood everything I needed to at the time.  I knew I’d never fit in.  It was not okay.  And it would never be okay.  I would never accept it, at least not until the last two years of high school, when I gave up on the majority of my peers.  They mostly ignored my pleas for friendship for years, and I was left out of everything. So finally, I was like, fine, be like that.  And I thought, one day.  That’s all.  One day.

My “real” friends back then were fictional ones.  Mary, Dickon, and Collin from The Secret Garden.  Sara and Becky from A Little Princess.  Meg, Jo, Beth, and Amy from Little Women.  And then I had the girls from The Babysitters Club series:  Kristy, Claudia, Mary Anne, Stacey, Dawn, Mallory, and Jessie.  Anne from Anne of Green Gables.  Laura from The Little House on the Prairie.  You know, those types of friends, the ones who could never hurt me.

2 and 3.  Anger and Bargaining

Many, many, many times during my childhood, I tried to make “deals” with God, or the entity that was my idea of God.  I was raised in the Catholic church, and usually spent Sunday services eyeing the Crucifix above the altar with a mixture of fear and disgust.  Fear because oh my gosh, there was a dead body on the cross and everyone else seems to think it is normal!  Disgust because if He knew what was going to happen to Him, why didn’t He do anything about it?  Couldn’t He have just hidden from His enemies?  I really didn’t understand why He died, why He choose to die.  He could have just slipped from their grasp, right?  He could have run away.  Like I did, and kept doing, over and over.

I’ve always identified the most with the Bible story of Jesus raising the little girl from the dead, like from the minute I heard it or read it, whichever it was.  I tried to reconcile that Jesus with the terrifying one in my head, and I just couldn’t do it.  I remember waking up, drenched in sweat, in the middle of the night, from a dream, nightmare, really. In that nightmare, I was alone in the church, and it was dark except for candlelight, which was everywhere.  I heard something, like wood breaking, and then I saw it.  Him.  I saw Him.  He was flesh and bone, not like He was on the cross, where He was ceramic or whatever he was made of, porcelain, etc.  AND HE WAS COMING FOR ME.  Bleeding profusely from His wounds.  I could see a trail of blood behind Him.  My heart was in my throat.  I couldn’t scream even if I wanted to.  I couldn’t move at first, frozen by terror, and then I could.  I raced to the door, but it held fast.  I was trapped.  That was when I woke up.

Since having that dream, I’ve always wondered what would have happened if He had caught me.  Back then, I thought He was going to hurt me, even kill me, and that is why my survival instinct took over.   That is why I ran.  Interesting thing:  In my dreams, most of them at least, I am free from the limitations of my physical body.  This is how I see myself most of the time.  My dreams are a manifestation of that.  Of course, I know now, that if Jesus had caught me in my dream, He probably would have just pulled me toward Him in an embrace.  He probably would have whispered comforting things in my ear. You aren’t alone.  I’m here.  But I guess I wasn’t ready to hear it.  I fought it.  I fought Him.  There wasn’t much I had control over, and there still isn’t, but this is the one thing I had total control.  I don’t know.  Maybe I liked feeling sorry for myself.  Maybe I liked being angry.  My anger gave me something to focus on, and I held on to it with all my strength.  I kept asking why.  Why am I like this?  If You loved me, then You would heal me.  I know You can heal me.  I want to be healed.  When I wake up tomorrow, I want to be healed.  Please.  There is nothing I want more.

But I woke up with the same body, the same problems I had the day before.  And I said:  FORGET YOU, JESUS.  I was so mad.  So disappointed.  So heartbroken.  I did not understand that wasn’t how Jesus worked…

3.  DEPRESSION

The earliest stages of grief are tied up with each other, My childhood was full of denial, bargaining, and depression.  I was a little ball of anger.  And then, I saw a picture in my first photo album… the ones that had pictures of me from birth to after the encephalitis.  There aren’t many of me in the hospital – who wants to remember that?  But there is one that spoke to me…  it is one of me, holding hands with another little girl.  I only know she’s a girl by the caption:  ”The Smiley Sisters: Missy and Danielle.”  We are more or less bald and wearing hospital pajamas, footie sleepers, holding hands, and emphatically NOT smiling.  In fact, we look miserable, like we were lost.  I asked my mom about it once.  She said the nurses at Seattle Children’s called us that because, despite that picture, whenever we were together, Missy and I always smiled.  So much.  The picture doesn’t do our friendship justice.  Missy was my first friend who wasn’t part of my family, who wasn’t a cousin.  And then…  and then I had to ask my mom what happened to Missy.  I already knew she’d had some form of leukemia.  My mom looked me in the eyes, and told me, “Honey, she died.  Not too long after that picture was taken.”

I didn’t know I could break anymore than I already was broken, but I did break more then.  One thing I’ve learned in my 31 years is that there are no limits to how much you can break.

Just like there aren’t any limits to how much you can heal…

I think my depression really began before that moment of truth, though.  I think it began in the moments in which my first scoliosis brace was being made.  I was 9 or 10, and these people who were supposed to be helping me had me lay down on a stretcher just had a thin strip of material down the middle, and empty spaces on either side.  I was so scared of falling, despite the fact that these people said they wouldn’t let me fall.  Where were you, Jesus, when I was so scared?  I felt so vulnerable and I cried and tried to fight.  My philosophy back then?  Always go down fighting.  And so I fought.  But I was no match for them.  No match for the hot plaster they tried to suffocate me with (not really).  I was just a little girl.  So helpless.  So scared.  So confused.

I don’t even remember hearing the word “scoliosis” until much later, much, much later.  Like in high school.  I’d had back surgery in November of my eighth grade year.  I knew pain.  I knew the embarrassment and awkwardness that came with wearing a back brace.  I hated it all.  If wishes were punches, then my troubles would have been punched.  HARD.  I was finally allowed to shed the brace in the winter of my freshman year of high school, and it was so freeing.  But my back problems were not over. They followed me into adulthood.  I had only a partial spine fusion in 1995.  They only did the bottom half, and over time, because it was a temporary solution, it began to break down.  I was in constant pain the year after I graduated from college, and the more active I was, the more the pain intensified.  Finally, I had surgery to repair the areas that were wearing down.  I thought I knew pain, but boy, was I wrong.

My first night home from the hospital, I felt something drop, or give away, inside of me, and then I felt a burning sensation in my leg.  I didn’t know how bad it would be until the next morning, when I tried to get out of bed. On the pain scale of 1 to 10, it was a 20.  Seriously.  I wanted to die.  I begged God to take me.  I screamed and cried multiple times a day, for 4 weeks straight, through 2 rounds of steroids.  The steroids only helped on the first days I took them, when the dosage was the highest.  I lost 10 pounds, weight I couldn’t really afford to lose.  The diagnosis?  Pinched nerve.  My doctor told me that he had only 60% chance of fixing me (no burning pain) with a second surgery.  The problem was, everything he had done in the surgery before was now loose inside me, and I know now he was afraid that my pain was permanent.  But thank GOD ALMIGHTY it wasn’t.  I wouldn’t be a functional human being today if it was permanent. I have a very low pain tolerance – it’s so low I can’t even claim to have any pain tolerance at all.

That was a dark time… a time of testing.  I dunno whether I failed or passed.  It is either/or at this point.  I do know that I am human, and where I thought I could not handle that level of pain, God knew I could…  because He knew what I was made of…  Because HE made me…

TO BE CONTINUED.

More on TheTruth365

 

I know I have used that image above before, but it is so perfect for what TheTruth365 stands for that I cannot resist using it again.  The Truth365:  what did I think?  MUCH more importantly, what did you think?  The truth about childhood cancer was laid out for you, raw, bare, and so, so, so, so, so heartbreaking.  Are you asking yourselves the same questions I’ve asked myself over and over again?

Why is the public not more aware of this?  Why is childhood cancer taboo?  Like little Katie reads from The Lorax in the beginning of the documentary, “UNLESS someone like you cares a whole awful lot, nothing is going to get better, it’s not.”  That quote is just perfect for this social media campaign.  Even more than that, I love what she says at the end of the film.  If you haven’t watched the film yourself, I am not going to ruin it for you…  Ha, ha!

TheTruth365 documentary really says it all.  It tugs at heartstrings,  It pulls at your emotions.  It talks about the common misconceptions about childhood cancer.  It has parents speaking to you as if you are in the same room as them, parents whose hearts are shattered and broken because their child is gone.

Could you look those parents in the eyes?  Could you reach out to hug them? Could you help them make sure that their child’s fight and their child’s death will not be for nothing?  And more importantly, if you were in their shoes, could you continue to fight for the other children who have and will have cancer?  Could you be as brave and as determined?

In the video, the ways you can help are outlined.  You can share it with EVERYONE YOU KNOW.  This is very important, because without awarenesss, where are we going to get funding for more research, better treatment options?  You are doing more than sharing just another youtube video.  You are helping.  You are spreading awareness.  Awareness is key.  Most people I talk to these days, the people who aren’t directly “touched” by childhood cancer, often have NO idea it is this big a problem.  They really have no idea that every single day, 36.9 kids are diagnosed (that number is much more accurate than 46, by the way, and although it is less, it is by no means any less serious…  and I think the decimal point is there because, although you can’t have 90% of a kid, every single day is different, and the number can change daily – children are more than statistics.  They have names.  They have faces.  They have parents, siblings, friends, aunts, uncles, grandparents, etc.  They have whole stories).

Go to TheTruth365 website and see which members of Congress support kids with cancer and which don’t.  Persistence is key here.  Contact them and ask them for their support.  Keep on doing it.  I know most of us lead very busy lives, but if it was your child fighting for his or her life, or even a child you knew, you would be asking right along with me.  You know it.  I know it.  Everybody knows it.  And the kicker is that nobody even things for one minute that childhood cancer can touch their child and by proxy, their lives…  until it actually does.  It is then that the wishing begins…  if only you knew what to look for, if only you were aware this could happen…

No amount of preparation can prepare you for the reality of childhood cancer.  It will still bring you to your knees.  It will still make you pray to a God you are no longer sure you believe in because THIS happened.  And yet, it is faith that sees many families through…  because without faith in God, they would just give up the second the fight got too difficult to bear.

And last but not least, sign the petition.  There is no Pediatric Oncologist on the National Cancer Advisory board as it is, which is part of the problem. No one is speaking for the kids except us, the survivors, the kids themselves, the parents, the families, and the friends. Childhood cancer is NOT RARE! 36.9 kids every single day are diagnosed, and 7 more kids die every single day. And that is just in the U.S.A. Once upon a time, I was one of these kids diagnosed, and it makes me SO upset that nothing has changed since then. Please sign this petition. Please share. It is on the White House petition site so it DOES MATTER and it DOES MAKE A DIFFERENCE. We need 25,000 signatures to get it in front of Congress and the President. We can do this!

And oh!  We have less than a week to get the remaining 21,000 plus signatures.  In the words of Audrey Hepburn, “Nothing’s impossible. The word itself says, ‘I’m possible.”

 

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!