Sunday, January 22, 2012

Awareness and Our Silver Lining

Did you know that the gold ribbon is the symbol for Pediatric Cancer? (grey is for brain cancer). I think we all know the pink one is for breast cancer. There is a reason for this. Funding. I always just assumed all cancer research was funded equally. I never thought to look into it. I never had a more personal reason to care... until now. 

Unacceptable Statistics:

The National Cancer Institute's budget is 4.6 billion dollars. 

Breast cancer research receives 12%, prostate cancer 7%, and all major pediatric cancers combined receive less than 3%!

It is estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes. Childhood cancer as a whole receives about $130 million/year in funding. At that rate, it will take 100 years to develop these drugs and 250,000 children will die.

Childhood cancer research is woefully underfunded compared to adult cancers. For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents.

Every day 9 children in the US are diagnosed with a brain tumor.  Brain tumors are the leading cause of cancer death from childhood cancer. There are more than 120 different types of brain tumors, making effective treatment very complicated.

At this time, brain cancer research is hugely underfunded and 
of the magnitude of this disease.

Tell people what you know about Pediatric Cancer. Maybe one day this ribbon will be as recognized as the pink ribbon and no other children will have to endure this.


There are so many thoughts going through my mind right now that I am drawn to my computer. I need to write them down and sort them out.

Positives to take away from this situation:

Community support! We never expected things to be at the level that they have come to.  The community outreach, fundraisers, Love & support from our congregation, volunteers, Dine and Donates, bake sales, meals, prayers, cards, thoughtfulness, selflessness are all above and beyond anything we could have ever imagined. Our community has all taken us under their wings and shown us a love and sense of spirit that we can never forget.  You all have helped hold us up on the toughest of days. You give us strength to fight the fight as a family which cannot be valued enough.

We caught it early! Statistically, 80% of all pediatric cancer isn't detected until it's already in stage 3 or 4. I know my child and I have the support of an amazing pediatrician who never underestimates the power behind mothers intuition. Dr. Yamaguchi, THANK YOU again for listening to me and going along with my gut feeling. You have helped to give Kayla a great chance in this long long battle. 

Having a surgeon so skilled, that he was able to fully remove the tumor. It was only 1/4 of an inch or less away from her brain stem. You can imagine the skill that was required. We feel fortunate there to have had the connection to get us in with Dr. Gupta. Thank you Patty! and Thank you Dr. G. 

The awareness this experience has given us into the world of pediatric cancer. The people and families involved from those that work for St. Jude and those being treated here. Everyone involved is amazing and will be sorely missed when we leave this place. That is a feeling I never expected. Bittersweet. NOT sad that my baby will be finishing Radiation, but sad because we have made some amazing friends there. We will truly miss their kindness, humor, and love in one of the toughest situations anyone can go through. 

Our families ability to be together during all of this is of the utmost importance. We are one and draw our strengths as well as cover each others weaknesses to form a spirit that cannot be shaken or broken. This cannot be taken for granted as it is the most important aspect of all. Love will get us through it. Faith will get us through it. God will get us through it. 

Kayla's strength. The courage she has to stay strong during all of the pokes, pricks, sedations, physical therapy,  and bandage changes. Watching her miss her friends. The pain she is now feeling realizing just how long we will be here. The amazing amount of understanding she has to this horrific situation to which she has been dealt.  Watching her eyes and expressions as she learns about cells, chemo, beams of invisible light hitting her brain and spine. Catching her expression when we explained that some people are here again. That this isn't their first battle against cancer. Watching as she pulls out clumps of hair. Seeing her noticing the tiny dots that have been tattoo'd onto her body. Giving her anti nausea medication 3 times a day, everyday. Watching as our medicine cabinet becomes full. Even when the days are long and she is exhausted, she still tries her best to continue to fight hard.  She says her prayers every night. She continues to keep us all strong.


  1. I think I will be sporting a gold and grey ribbon from now on. Thank you for bringing awareness! Miss you, stay strong and I'll keep sending prayers ur way. -Kerry S.

  2. Hey guys,

    If there's one thing that my sister taught me, it was to ALWAYS look for the Silver Lining and Find the Joy in any given situation. When I saw this title of your blog today, it just made me smile. :)

    Knowledge is truly a very powerful tool in life. And to think about how many people just learned from your blog today about Pediatric Cancer!
    I'm so very blessed to have you all as Family; thank you God, for blessing me with all my loving children. They are such a gift!

    We will all get through this together. Because we all have faith, hope and most of all, LOVE.

    Goodnight my gifts,


  3. Kayla is touching so many hearts...and, together with your beautiful family and this blog, she's changing the world, too!

  4. Those statistics are staggering, and pediatric cancer better watch out now that it is on your radar. I picture Kayla kicking her illness for good, and then Annie helping to kick pediatric cancer's behind. You are all such fighters and some of the strongest people I know. Stay strong! Continuing prayers and counting down the days to your slight reprieve. XOXO

  5. Wouldn't it be great if we added the silver ribbon to the tables and the name tags. ON IT STAT! Thank you Wiz for continuing to educate us all!

  6. Annie! OMG. I am going to try to print this today at Reed and post it on the school office's memo board. This awareness needs to be spread! Is there any way we could put a link on this site to purchase gray ribbons to support this cause? Not sure who does your web stuff, but it would be huge to start wearing these around town like the pink bracelets and have people question and get answers!! I love you all and I am counting the days til I can hug you all again !!! --Auntie Nikki

  7. My facebook post tonight...Every day in the US 9 children are diagnosed with brain cancer. The national cancer institute's budget is 4.6 million but pediatric cancers get less than 3% vs breast cancer @ 12% or prostate cancer @ 7%. So if you are in a position to donate please consider sending your hard earned dollars towards a pediatric cancer. Thank you on behalf of 7 yr old Novato's Kayla Rose Dehnert who is undergoing treatment for brain cancer at St. Judes.
    I hope some of my friends give it some thought. Love, Cate

    1. I hope you don't mind, but I would like to also post this on my Facebook Wall. Facebook can be a very powerful tool and word about this needs to be broadcast. Thanking you in advance. Lynn from Novato

  8. 140 types of brain tumors - that's amazing. Thanks for posting all this great info. Great insight how experiences like this bring communities together.

  9. Annie, I think this post is something everyone needs to read. It is astonishing that pediatric cancers receive 3% of the funding. I am posting it my facebook page for my friends and family to read. We are so impressed by Kayla's strength and you, my warrior friend. Susie and Rus

  10. This comment has been removed by the author.

  11. Last December I found two organizations that focused on childhood cancer and had low administration and fundraising costs: The Rally Foundation and Alex's Lemonade Stand. Alex started raising money in 2000. The Rally Foundation was founded in 2005. There may be others...

    Page 17 of this report lists malignant neoplasms as the second leading cause of death in 2007 (behind accidents) for children aged 5-14 years.