Monday, March 16, 2015

Monday, March 16, 2015

Tonight's picture was taken in March of 2009. Mattie was outside the child life playroom at the Hospital and getting ready to participate in the ribbon cutting ceremony. When Mattie first arrived at the Hospital in July of 2008, there was NO child life playroom. Over the course of his treatment this wonderful space was built. This space became vital to our existence. Therefore when this special ceremony occurred, Linda (Mattie's child life specialist) invited Mattie to be one of the special ribbon cutters. Of course Mattie jumped at the chance. Linda knew Mattie LOVED a good task! 

Quote of the day: When I dare to be powerful----to use my strength in the service of my mission, then it becomes less and less important whether I am afraid. ~ Audre Lorde

There was a campaign going around Facebook today in the childhood cancer community called the "NCI Selfie Campaign." Childhood cancer organizations were asked to take part in this campaign to spread the message about the inadequate amount of research funding allocated by the National Cancer Institute (one of the Institutes of the NIH) to childhood cancer. Organizations were asked to take a "selfie" (which is a photograph that one has taken of oneself, typically taken with a smartphone or webcam and shared via social media) and hold up a flyer that contained a pre-printed message and send it out on Facebook and Twitter. So this morning, both Peter and I staged our own selfies. I did mine in Mattie's bedroom and Peter did his at work. 

I wanted the selfie to be meaningful. But I wasn't sure what I wanted in the backdrop of the photo! Then it dawned on me! What would symbolically convey Mattie's life? Mattie's clothing!!! So I pulled out his beautiful memorial quilt and I hung it on my closet door and then I began to tape photos of Mattie to the quilt. You can see the final product below! Yet for me it was a balancing act to hold my phone in one hand and try to pose for this photo and not move. But I somehow managed! My goal was to be looking at Mattie in the photo! Hopefully that was conveyed! 

When I posted the photos of Peter and me, I also included the following message below on Facebook! Though the nature of the campaign is to raise awareness for funding of medical research, Peter and I think it is always VITAL to spread the message of psychosocial support. Funding needs to be raised for this as well and this type of support much be provided to children and their families in order for an effective health outcome to be achieved. 

What was posted on Facebook.......

Mattie Miracle Cancer Foundation unites with the cancer community today in support of the position that more must be allocated for childhood cancer research at the National Cancer Institute (NCI). The current 4% won't do! NCI would argue that "the 4% statistic does not reflect its entire contribution to understanding and treating childhood cancer and that the NCI invests nearly half of its $5 Billion budget for cancer research that is not specific to any type, but includes many that affect children."

However, the facts speak for themselves..... 15,000 children are diagnosed with cancer a year, 2000 children die from the disease a year, and there are 300,000 childhood cancer survivors in this Country who are dealing

with late effects (e.g., infertility, heart disease, diabetes, hearing loss, psychosocial issues, and secondary cancers) from the toxic treatments they received. We have to do better for our children and their families.

Pictured with our 4% sign is Mattie's memory quilt. His quilt and memories are all we have left of our son. For us and so many other parent advocates, childhood cancer is very real and deserves more than 4% of National attention and funding. For us childhood cancer is much more than just about the medicine.