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Devastated + Awareness

Sun Sep 29, 2013, 5:01 PM

To my Watchers and anyone else who happens to stumble upon this journal entry: This may be difficult for you guys to read, but please... read it and think about it. For me, for my son, and for everyone else out there who has been through this or is going through it right now. Childhood cancer needs to be acknowledged-- we NEED awareness.

In loving memory of my sweet Landen Bug:
September 12, 2008 - August 31, 2013

My beautiful son Landen passed away on August 31st of this year, after a two-year battle with acute myeloid leukemia (AML). He was four years old.

I started a CaringBridge page for Landen when he relapsed last year, on September 5, 2012. It contains journal entries from that point until now, as well as the full story behind his diagnosis (and later diagnoses) and everything that he went through during those two years. It was meant to document his journey as he kicked cancer's ass. Now, it will stand as a memorial to honor everything that he went through in his almost-five years of life.

We will never walk together over the fields of earth,
Never hear the birds in the morning. 
Oh, I have lived with you and loved you 
And now you are gone away, 
Gone where I cannot follow 
Until I have finished all of my days.

I miss my Bug.


Before Landen was diagnosed I knew, vaguely, that kids could get cancer... but it was one of those "That's awful, but it's so rare that it could never happen to my Bug" sort of things. Surprise-- childhood cancer is NOT rare. Landen and I have been going to MD Anderson Children's Cancer Hospital in Houston for the last two years, and in that time the number of pediatric patients coming to MDA for treatment has doubled. 

How scary is that?

While we were in-patient this last year, Landen (and I) made friends with a girl named Hannah who is just a little bit older than him. She has a brain tumor and she's still fighting-- but the doctors have only given her a 5% chance of survival.

Hannah and Landen hunted Easter eggs together in the pediatric wing in March, and we've kept in touch with them via phone calls and emails when we didn't see them in-patient or at the clinic. Recently, her mom raised a lot of money for the St. Baldrick's Foundation, and she has said that she's going to stay bald (and tell people who ask her why she's bald about Hannah's story to raise awareness for childhood cancer) until Hannah is cured. Hannah and her mom came to Landen's funeral-- I pray that I won't have to go to hers.

Five-freaking-percent chance of survival. What the hell kind of number is that?!

Please pray for Hannah and her family, and for all of the other families facing this struggle every day-- and for the ones who will be facing it tomorrow, and the next day, and the day after that... and if you could, please say a prayer for me and my family as well. The day-to-day may get easier with time, but nothing will every make it "better." 

Some days it feels like I died too, and my body just hasn't realized it yet.


Here are some statistics for childhood cancer, just to put things into perspective:

  • Each year, roughly 13,500 children 19 years old and younger are diagnosed with cancer in the United States.
  • On average, 36 children and adolescents are diagnosed with cancer EVERY DAY in the United States.
  • 1 in 5 children diagnosed with cancer will die within 5 years.
  • 1 in 3 children diagnosed with cancer will not live out a normal life-span.
  • The causes of most childhood cancers are UNKNOWN. At present, childhood cancer cannot be prevented.
  • Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • Cancer is the LEADING cause of death by disease in children under the age of 15 in the United States.
  • Childhood cancers affect more potential patient-years of life than ANY other cancer, except breast and lung cancer.
  • Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis, and congenital anomalies COMBINED.
  • In the last 20 years, the FDA has approved only TWO drugs for childhood cancer. Half of all chemotherapies used for children's cancer are OVER 25 YEARS OLD.
  • Some pediatric brain tumors are terminal upon diagnosis and NO new protocols have been developed in the last 30 YEARS.
  • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs, but close to ZERO for childhood cancers.
  • In spite of this, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children's cancers.

Please... think about that. 

Think about the thousands of children going through this right now. In the last two years, I've learned that a lot of people don't like to think about childhood cancer, let alone talk about it-- but this is something that everyone should be talking about. THIS IS NOT SOMETHING THAT'S JUST GOING TO GO AWAY.

As we move closer to October, I see pink taking over shelves in stores and pink ribbons to support the Susan G. Komen foundation and breast cancer awareness month. Childhood cancer does not HAVE widespread acknowledgement like that-- where are the gold ribbons? Where are the companies with the "Go GOLD for childhood cancer" merchandise?? It's not there. We aren't there yet, but we should be. We NEED to be.

Please remember that KIDS GET CANCER TOO!

Those statistics were taken from a much larger list on the People Against Childhood Cancer website. Even more information can be found on the Children's Hospital of Philadelphia's website and the American Childhood Cancer Organization's website, as well as in many other places around the internet.

Add a Comment:
Vashtari Featured By Owner Oct 4, 2013  Hobbyist General Artist
:hug: I've actually been pretty aware of childhood cancer. When it comes to awareness, it seems to depend on who gets behind it, who networks with who, in order to get it out there.

Recently, on another account, I'd actually participated in a charity art book for an Australian charity. They deal with youth cancer patients. Visit :devetherealartbook: if you're curious. Childhood cancer may not be a wide-spread event like breast cancer seems to be, but at least lots of deviants have done their best to support. Some even paid their way into the art book, which went as decent-sized donations to the charity. I used to think that my art felt a bit useless, but participating made me feel like my art can do something useful.
LadyValiant Featured By Owner Oct 1, 2013   General Artist
Thank you for posting this. I feel ashamed that I didn't know that there was a color for childhood cancer. I do agree, there needs to be more info out there, and more awareness for this.  We could do something.. art wise, get people together.. if anything should come from it, maybe give back to where it should go. It's really just a thought. I've known several great people who have tried to make kids lives better, put a little joy in their life's.  I'm so super proud of you. Landen will always be a great kid. He's still someone I can look up to.
Bassara Featured By Owner Sep 29, 2013
I didn't know what to say before, and I still don't....but I am so very sorry, Kadri.  So, so sorry.  I will keep you in my prayers. 
Shianne Featured By Owner Sep 29, 2013
I'm so sorry for your loss Kadri, darling. If you need anything, anything at all, you know where to find me. I wish that there was more that I could say but anything I could will sound hollow I think. You're a good friend and you and he are in my thoughts. All my love darling, chin up for him. <3
randomaxes Featured By Owner Sep 29, 2013
big hug darlin.
you know, although we've never met, and i can't truly understand the things you are going through,
i was here, with you, from the beginning,
and i'm still here now.
i felt a very strong emotion from your last journal; like i /did/ know you and bug.
it may seem weird for you but, i felt a great loss.

i guess what i'm say is...i'm with you, my dear.
prayers, positive energy, support in any way i can.
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