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.”

 

30 DAY LETTER CHALLENGE: DAY 3 – MY PARENTS

Dear Mom and Dad,

Since the very beginning of my life, you guys have been my two biggest cheerleaders.  I know you remember the things that I don’t – how it felt to be told that I had cancer, and to watch me constantly struggle with life from that moment on.  Thank you for loving me through it all.  I know God had different plans for me than you and I would have had, and we had to learn to go with the flow instead of fighting it.  Those were difficult lessons, but good lessons nevertheless.  I think it has turned out to be quite the ride, don’t you think?

Thank you for always being honest about how I’ve come to be this way.  I understand a lot more of what you guys went through back when I was sick, due to following kids with cancer on Facebook and reading what their parents write.  You never gave up on me.  You never said I couldn’t do something I wanted to do if there was a chance that I could do it.  You treated me no differently than you treated Ryan, Patrick, and Jacqueline, and for that, I’ll always be grateful.  It set the standard for me.

When I wanted to go away to university after I got my A.A. degree, you let me go.  I knew, of course, that you were about an hour away.  And after college, when the back pain started up, you guys were right there with me, wanting to get it fixed.  Of course, I was my usual stubborn self and it took me a while to admit that it wasn’t going away by itself.

And, oh…  Thank you for letting me get a dog.  I know it was trial and error for a while there – I’ve never really taken care of anybody else other than myself – it’s amazing to me Buffy is still ALIVE after almost four years in my care – ha!  She helps me see the lighter side to life – every time I look at her, I have to either smile or laugh.

And last but not least, thank you for undertaking the ginormous project of expanding the back of the house and building me a bedroom on the main floor with my own bathroom/walk-in shower/closet.  I know that was a lot of work, more than a lot (and also stress).  I just want you to know that I appreciate it!

I love you both to the moon and back!

XOXO

 

Dear Men and Women in Charge

Dear _________________,

“You are my sunshine, my only sunshine, you make me happy when skies are gray, you’ll never know, dear, how much I love you, please don’t take my sunshine away.”

My mother sang these very words to me when I was a baby and had neuroblastoma, one of the most common and often the most deadly pediatric cancers. After 2 major surgeries, chemotherapy, and radiation, but before the treatment protocol was even done, I came down with a viral infection that attacked and damaged my brain stem, leaving me with physical disabilities not unlike cerebral palsy, hearing loss, and a speech impairment. I was basically an infant again at 3 years of age, and with my new baby brother, I relearned how to do everything. Today, at 30 years of age, I am independent as much as possible, but I still live with my parents. I have a B.A in English, and I am an aspiring novelist. What do I want to write about? You’ve got it – childhood cancer.  

There was a little girl I was friends with in the hospital.  Her name was Missy, and she had leukemia.  The nurses called us “The Smiley Sisters” because when we were together, we always smiled.  It’s sad because I don’t have a picture of Missy’s beautiful smile.  Instead, the one picture my mom has of us together shows us in hospital pajamas, clutching hands, and wearing serious expressions on our faces.  Missy died not long after that picture was taken.  And you already know what happened to me.

Pediatric cancer is relentless even today. Every single day, 46 children are diagnosed, and every single day, 7 more of them die from this monster.  Try explaining cancer to children who are losing or have lost a friend, sibling, or cousin to cancer.  How do we explain that we, as adults, cannot make it better, at least not by ourselves?  We have to unite to fight this monster called pediatric cancer.  We cannot protect children from pain, either physical pain or emotional pain, but it is high time that we stand up to cancer and decide that we are going to do and be more to save the children.  Children are, after all, the future, and everyday, the future is dying.

Ronan Thompson was the first child whose journey I started following early last year.  He had been diagnosed in August 2010 with neuroblastoma stage four.  I think if we want to nip childhood cancer in the bud, then we need to start screening for it, at pediatric appointments.  The reason why neuroblastoma is so deadly is because it often isn’t diagnosed until the late stages, when it has already spread.  Sadly, Ronan passed away a few months after I first started following him.  Have you heard of Maya Thompson?  I wouldn’t be surprised if you have.  She is Ronan’s mother and the author of a blog that she kept for Ronan when he was sick, and after he died, she started writing letters to him.  She’s determined to change things in his name, and I believe she will.  And I’m going to help her.  Maya Thompson has an army behind her, as do the Kaufmans, who lost their two year old son RJ to the same cancer this past February.

Can you imagine outliving your child?  It isn’t natural, but it is a reality for hundreds upon thousands of parents out there.  It is a reality for my friend Missy’s parents. It is a reality for Maya and Woody Thompson and Rodney and KelliJo Kaufman.  Stand up with me and my family and friends and the other survivors, the parents, the siblings, and the littlest patients as we fight for a cure.  We all look forward to a day when cancer is nothing more than a zodiac sign. 

It is my prayer that you will help lead the way for more childhood cancer awareness in this country and join us in the fight for more funding for research.  Awareness plus funding equals research, and more research will lead to cures.  Please, if you are not convinced by now, won’t you go visit the pediatric ward at your local hospital?  See the smiles and joy of children unaware that their lives are at stake, and see the tears of the parents who are being told that there is nothing else to be done for their little one.  Please help us.  Thank you for reading this.

Happy birthday, Mom!

Top pictures: Mom is in the center of her family photo (this was before she met my dad), my mom and me just after I was born, the Cloakey gang on Christmas Eve 2010. Bottom pictures: Aliza and her Nana, one of my parents' wedding pictures (1980), my mom and dad, and my parents with my brother Patrick and his fiance Angelica after he proposed. Even more happy times are ahead.

Today is Friday the thirteenth, indeedy, it is.  But it is also my mom’s birthday.  My dad had ordered her a Kindle Fire (I’m jealous!) and he gave it to her this morning.  He won’t be here tonight as he has a game in Omak and won’t be home until midnight or after.  He also let her order two things she wanted out of a catalog.  He told me this morning (Mom was upstairs getting ready for the day) that when he gave her the Kindle Fire, she asked him, “Why did you let me order those other things?”  His response?  ”Because you wanted them.”

Awww.  My dad is so good to her.  He told me early in the week about the Kindle Fire, because he wanted me to intercept it so she wouldn’t see it before today.  He also said he ordered a new vacuum cleaner as well, because he had broken the one we had.  When the vacuum came on Tuesday, I thought (foolishly) that it was my mom’s present, and text my dad, panicking.  While I waited for a response, I managed to pull the big box into the house and push it all the way back to my room.  Clearly, I wasn’t thinking.  When my dad answered my text, I felt stupid and pushed the big box back out to the kitchen.

We all have our moments!

He joked with my mom:  ”How do you like your birthday present?”

Because she knew that she was getting something else, she smiled and said, “This is not my birthday present.”  But she had no idea about the Kindle Fire.

Last night, I was walking to my room and I saw the new vacuum on the floor.  I pointed at it and said, “That’s so cute!”  And my dad said, “I know, that is why I got it!”  And if any of you care, you can see the one he got here.

Today, my brother Ryan and sister Jacqueline  are coming home, and Patrick and Angelica are coming over with Aliza.  PAR-TAY!