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.

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!

Today is the Someday I’ve Been Waiting For

I’d like to give a shout out to Maya Thompson, mama of Rockstar Ronan.  Yesterday, she ran in the San Diego Rock and Roll Marathon without training, and she finished in amazing time – 4 hours and 51 minutes!  Amazing what people can do when they put their minds to it, huh?  She has said, “If kids can fight cancer, then I can run a marathon without training for it.”  Kudos to you, Maya…  I am so proud of you, and I know Ronan is too.   I know you don’t like to hear it, but you ARE an inspiration.  Look at it this way…  Ronan is making you an inspiration.  You and Ronan are gonna take this world by storm.  I’m inspired to create my own statement – “If kids can fight cancer – If I could fight cancer and survive – then I can use my writing gift to help spread awareness.”

This world may be filled to the brim with things that are awful, like childhood cancer and people who lie and say that they are sick but they’re really not, but it doesn’t mean that we should give up.  It means, instead, that we should strengthen our resolve and fight back harder.  It’s the only way we’re going to come out on top.

Someday is today.  It has to be, because tomorrow may never come.  No one knows this better than someone who has lost a loved one.  Cancer is horrible and it deserves to be vanquished.  That is why I enjoy seeing F U Cancer everywhere on Facebook.  Nothing has ever been more deserving of being effed, ever.

If kids have to fight cancer in this day and age, then I’m throwing everything I’ve got at it – my whole mind, body, and soul at it.  I will write and publish novel after novel about it, until people begin to understand the devastation cancer brings and begin to stand up with me.

 

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.