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.

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.

Taylor Swift Tonight, and the LOVE of an 8 year old

 

Please watch Stand UP to Cancer tonight if you can.  If you can’t, please record it.  Taylor Swift will be debuting her song, “Ronan” for the most beautiful little boy in the world.  Ronan Thompson’s story is why I am here today, fighting like hell to end childhood cancer.  Ronan was mere days from turning four when he passed away from neuroblastoma last May 9th.

Did you hear what I said?  Did you hear?  TAYLOR SWIFT WILL BE DEBUTING HER SONG FOR RONAN TONIGHT!

I freaking love Taylor Swift!  Also, I am gonna bawl my head off, so it is a good thing that I am recording it and can rewind it multiple times if I have to.

Taylor Swift reads Maya Thompson’s blog and she actually met Maya at one of her concerts (last year?  I don’t remember when I read it but I remember everything that was in the post) after Ronan passed, and she cried and hugged Maya and told her that she and her parents read her blog, and Maya was like, “Wow!”

It is the little things sometimes that remind you just how beautiful the world is, how beautiful the world is capable of being.  Yes, it is hard and ugly at the same time, with empty places where our beloved dead once were.  But the world is still capable of being beautiful, and thank you, Taylor Swift, for reminding my friend Maya of that.  Thank you for making her smile through her tears.  I seriously didn’t think I could love you anymore than I already did, but I was wrong, of course.  Love, when it is pure and true, has no limits.

One other thing brought me to happy tears this week.  You can read the story here.  It begins, “ When 8-year-old Wyatt Erber entered a scavenger hunt sponsored by a bank, he already had a plan for the winnings: to give the money to neighbors on Sequoia Drive whose young daughter recently began battling leukemia…”

Yes, love is what makes the world beautiful.

 

Happy

I’ve been so caught up in the bad news in the childhood cancer world this week and TheTruth365 stuff that I nearly forgot to share with you the good news – Emily Hubbel’s news!  Yesterday, Emily’s mom posted a blog post entitled “CLEAR.”  When I saw that, I got really excited because it could only mean one thing:  the MIBG scans were negative!  Not only is there no progression, but she is absolutely clear (not even a single tumor)!

Insert happy dance here!

As you can imagine, the Hubbels are celebrating this weekend.  How?  By doing something Emily loves to do:  camping!

She still has treatment to finish though her scans were clear.  They want to be absolutely sure that the neuroblastoma is gone, that it won’t come back.  But she is free, thank the Lord!

GOD IS SO GOOD!

Talia Joy

I want to tell you the story of a brave young girl.  On Valentine’s Day 2007, when she was just 6, Talia Joy Castellano was diagnosed with stage IV neuroblastoma. Whereas it is true that neuroblastoma typically shows up in smaller children, it is not entirely unheard of in children over five and under ten.  I am thinking the older you are when diagnosed with it, the greater your chances are of relapsing.  It was certainly true for Talia.  The first time her cancer was in remission, she got to live a treatment free life for thirteen months, and then in September 2008, her fight began again.  This time, she went into remission for two years before relapsing just before her 11th birthday in August 20010, and again last April.  She just found out on a few days ago that she has relapsed again, and this time the cancer is in her bones.  And on top of that, she has pre-leukemia, which means, as she states in the video above, it will eventually become full-blown leukemia.

Talia is simply amazing in that she does not let cancer get the best of her – it may be claiming her body, but she refuses to let it darken her spirit and the light in her eyes.  She is leaning towards not fighting anymore, doesn’t want to subject herself to anymore painful and toxic treatments that may or may not work.  She has already gone through so much – surgeries, hospital stays, chemotherapy, medical testing, as well as experimental testing, and a stem cell transplant.  The pre-leukemia means that if she should decide to go through with it. she would have to have a bone marrow transplant.  Talia is leaning towards not doing it, because the recovery process is excruciating.  However, she has not given up…  She just wants to enjoy the rest of her life, however much time that is.

I found Talia last year, when I first started really advocating for childhood cancer and I am really ashamed to say that I haven’t been following her too closely until now.  The vlog above is the first Youtube video of hers that I’ve actually watched.  She usually vlogs about makeup and does tutorials, and even has her own Youtube channel – taliajoy18.  She is quite famous in cyberspace and is such an inspiration to her followers and fans.

She will be turning thirteen a week from Saturday.  I hope you will “like” her Facebook page, and join me in wishing her the best birthday ever.  She deserves it!

I Will Not Stop

I wish I could wish cancer away.  I wish wishes were free and came true, but only if you really mean them, deep down inside.  God is smart enough to tell the difference between a real, honest-to-goodness wish made from the depths of the soul and a wish made in the heat of the moment.  He would never allow a wish that called for someone’s death to come true.  And if I couldn’t wish cancer away, I would definitely wish for it to be more obvious, like for an automatic alarm to go off and a siren to sound and red lights flashing in the house of the ailing person.  Especially a child, because children often cannot speak for themselves and have to depend on others bigger than them to notice something is wrong before anything can be done about it.

Today, I looked at the symptoms of neuroblastoma as part of my research for TheTruth365.  First symptoms are vague, and can be passed off as a virus:  fatigue, loss of appetite, fever and joint pain.  Because it can manifest itself anywhere in the sympathetic nervous system (neck to pelvis), further symptoms vary, depending on where the primary tumor is located.  It can render the child unable to crawl, stand, or walk.

In my case, I had trouble walking.  I started using walls and or furniture to maintain my balance, and even then, I fell down a lot.  And when the nurse at my fifteen month check up asked to see me walk, she noticed that I hyper-extended my right leg (which indicated renal artery compression).  My mom has said that the nurse’s first thought was that I might have something wrong with my hips.  I was taken to a pediatrician, and after examining my eyes, the doctor was concerned that I might have a brain tumor.  But the CT results showed nothing abnormal.  The doctor then told my parents that he thought I might have a viral infection of my cerebellum (part of the brain which controls how we move).  He took some abdominal x-rays, which showed nothing.  He then ordered a urine test, and when that came back abnormal, I was admitted to Children’s Hospital in Seattle.  They ran a twenty-four hour urine collection, and hoped that the results would show something, anything, since nothing else seemed to be working.  On January 13, 1983, my mom’s birthday (of all days), I was diagnosed with neuroblastoma, stage IV – about as bad as the disease can get.  My primary tumor was on my right adrenal gland (on my kidney),  which they only found by way of ultrasound.

The story gets even longer from there, but obviously I survived the the unsurvivable.  I am here today, telling and retelling my story in hopes that it will motivate people to help, to come join me in being a voice for those who have no voice.

Neuroblastoma is a tricky disease.  Sometimes if it is detected in infants less than a year old, it corrects itself, goes away on its own.  I have heard of one or two of these cases, though I don’t really remember the specifics.  And sometimes, no primary tumor can be detected.  It is invisible in every way.  How can this be?  I don’t know the answer, but this just strengthens my resolve.  Time to fight for a cure, for the children who never got a chance to grow up, and for the children who was just diagnosed with this monster.  I so wish cancer did not exist, that this was a perfect world, with no diseases.  I know that there is a lot more wrong with the world than its diseases, but I am only one person.  I choose childhood cancer advocacy because I do not want any other child out there to have my childhood.  I would not wish it on anybody.  I understand now what happened, and whereas I think I know why it happened (so I can be here today doing what I am doing), I probably only see a small fraction of what God’s actual plans are for me.  And that’s okay.  I’ll take it day by day, and I will not stop.

Tackling Neuroblastoma

 

This morning, I got an email from one of TheTruth365 research team managers asking for introductions.  I wrote mine out in no time flat and got a response saying that I am officially assigned to research neuroblastoma for the documentary/project.  I think it would be of little surprise to anyone that I could probably sprout off neuroblastoma facts in my sleep.  Isn’t that the way things go?  The more you immerse yourself in something, the better you come to know it.  And if it is a bad thing, like neuroblastoma, you become committed to seeing it disappear, as I am, and as I will be until I breathe my last.

I have two weeks to get my facts straight and to prepare a report for the Truth team.  Piece of cake, right?  I think it would be if it wasn’t so personal to me, if I didn’t have to stop and take breathers every now and then because everything I know and everything I am learning makes me want to throw up.  How can people just ignore this reality?  How can they just let neuroblastoma run rampant in the world?  I will never understand this as long as I live.  Ignorance is deadly.  It is long past time people started waking up to the truth, and mark my words, they will.   They will hear our cries and pleas – they won’t have a choice, because soon we will be so loud they’d have to be profoundly deaf not to hear us.

I would like to ask for prayers for a little girl named Emily Hubbel.  I found her last year when I first started to get into advocating for childhood cancer, and back then, there was little hope for her.  She has neuroblastoma, and her parents entered her in a clinical trial for a drug called nifurtimox.  You can learn more about the drug by clicking here.  Today, Emily’s mama, Shannon, posted a worrisome blog in which she said that Emily has developed four red/purple nodules, all of which are on different parts of her body.  They don’t itch, but they are painful when they are touched.  It could be an infection (but Emily doesn’t have a fever, so it’s not likely), or they could be blood clots or they could be neuroblastoma progression.  Emily has an scheduled MIBG scan next week, and her doctor said that if the spots are gone, they would obviously cancel it.  As you can probably imagine, the Hubbels are beyond scared that this is progression (neuroblastoma can metastasize to the skin), and would appreciate extra prayers said on behalf of their daughter.  They are scared beyond belief.  Emily is just a little girl.  Thank you!

Are You Aware?

Today marks the beginning of International Neuroblastoma Awareness Week.  I think it needs to be every single week until this beast is vanquished for good.  Yesterday, a 6-year-old girl called Princess Lilly Valentine whom I followed on Facebook passed away from this disease.  She was just diagnosed in March or thereabouts.  That is how relentless this monster is.  It shows no mercy, and in defeating this dragon, we have to show it no mercy.

As a survivor, I feel it is my duty to continue the fight for Lilly, and for the others – Sierra, Rylie, Ronan, Saoirse, Tanner, Ila, RJ, and for those who are still fighting the beast – Emily, Brooke, Wes, Mia, Mallory, and Jacob.  There are more names, more children stricken with this stupid disease.  The list is longer than my arm.  I could rattle them off, but they’d be just names to you, unless you get on Facebook and look these children up.  Most of them have pages of their own because it is the easiest way to keep family, friends, and strangers alike updated on their journeys through cancer.  And as a survivor of neuroblastoma, I am determined to see the day when cancer is just a zodiac sign.  Go big or go home.  Those are my choices.  And I choose to go big.

This is only the second annual International Neuroblastoma Awareness Week.  It was originally started by Families Against Neuroblastoma (FAN) in the United Kingdom, but now it is a global event.  Did you know that it is the number one solid tumor cancer killer of kids?  Most children cannot even say “neuroblastoma.”  It’s grossly unjust.

The colors of neuroblastoma are purple and gold…  gold for the cancer (because, as I’ve said time and time again, children are more precious than gold…  All I need to do is look at my 3-year-old niece to confirm that), and purple for the children who have passed away from it.  I am wearing purple today and ALL of my cancer awareness bracelets (I wear them ALL every single chance I get).  I have enough to wear purple and/or gold all week long.

If you have healthy kids, do you know how blessed you are?  Hug them tight.  Yes, they will get on your nerves sometimes – that is part of what kids do.  There are parents out there saying goodbye as you read this.  There are children leaving this world.  It’s not right.  You can say that they are going to Jesus all you want, but the truth is, parents should not outlive their children.  Period.  Especially when these children are just babies.

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.

 

30 DAY LETTER CHALLENGE: DAY 14 – SOMEONE (SOMETHING) I DRIFTED AWAY FROM

Dear Innocence,

I don’t know when I started drifting away from you.  Was it when I was two and a half?  That day when the fever started, when my legs began to hurt?  I am glad I don’t remember that pain.  I wonder if I could, if I really tried.  But I don’t want to.  There is nothing good to be gained from that.  Nothing.  Sometimes I think it would be nice to remember being just like everyone else, but in the end, I’m just me.  I cannot be anyone else but who I am.  So thanks for allowing me to learn that lesson.

I know it wasn’t immediate, my drifting away from you.  I lost you by degrees.  When I was nine years old, getting my first back brace made – that was a big one.  They put me on a stretcher like thing, but it wasn’t a solid bed…  it was a stretcher frame with a thin strip of material down the middle.  I was terrified, despite how many pairs of hands were keeping me in place.  Looking back now, I only see the hands.  I don’t see the people attached to them.  And when they started to wrap my torso in wet plaster, I had the feeling of being suffocated.  It was hot, the plaster, and they had put a tube stocking on me so that it wouldn’t stick to my skin and burn me.  I cried all the same.  I didn’t want the kids at school to know I was anymore different than I already was, so I vowed not to let the other kids know about the brace.  But the first day back at school, I lifted my shirt so that everybody could see.  I still don’t know why I did that.  Maybe to get it over with?  Nine is also the age where I finally realized that I was different – that I wasn’t like anybody else I knew.  I pestered my mom with questions.  She told me the truth.  Cancer.  Neuroblastoma.  Viral encephalitis.  I didn’t understand.  They were big words.  Why did it happen to me?  And then later, much, much later, I began thinking, why not me?

Today, I am still imaginative, still a dreamer, despite all that I’ve been through.  I still believe in good things even though my life has been hard.  But I think…  I know we are not put into this world to have an easy time of it.  We are to hold on to whatever part of you – innocence – we can.  Some moments are harder than others, but that doesn’t mean we should give up.  No – instead, we should fight to preserve the goodness in life.  A baby doesn’t know what can hurt him/her – it is only through trial and error that he/she learns.  That is life.  Sometimes it really sucks, but it’s life.  And so, I thank you for being there to balance everything out.  You protect people from things they are not ready to know.  If you weren’t there, then everything would come rushing at us at once, and that would be too much.

Sometimes, I miss you though…

Love,

D